Question 6 Responses

What Does the Future Hold, Particularly for Adults? (Lifespan Issues)

Themes from Responses to Question 6

• Improve access to and quality of adult services, including additional research to improve evidence based services for adults
• Improve access to diagnosis for adolescents and adults
• Need assistance for adults with autism and their families in navigating available adult services
• Services and research should take into account the perspective and choices of adults and their families/caregivers
• Improve community integration/inclusion, including social isolation and community education about ASD
• Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
• Improve the quality, accessibility of housing options
• Long term and financial planning are a priority for research, services, and policy
• Focus should be on early intervention or developing effective treatments, adults/lifespan are not a research priority
• Need for a larger, better trained and compensated workforce for adults with ASD
• Research and services to improve health, medical care, safety and quality of life across the lifespan
• Improve transition services, and provide better assistance for young adults and their families during transitions
• Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
• Multiple Themes Addressed

Improve access to and quality of adult services, including additional research to improve evidence based services for adults

Respondent	Response
Anonymous	Adult services are lacking, especially those that serve adults with behavior issues and autism. For all the talk about employment first, the results of a lot of effort in this area are limited. We need to also focus on the lives of the adults with autism who will never be able to be employed, but can still live a full life. Employment is NOT for everyone.
Carla Charter, Disability advocate	The biggest gap we have found is lack of financial support. Due to the autism one of us had to give up our jobs. For 25 years we have been able to access absoultly no financial supports and have pretty much been on our own, with us always being $2-3,000 over financial limits. Every time I tried to access a service we have been told we don't quite fit but we are very resourceful. Then the agency walks away. Honestly it feels like any money for Autism out there either goes to research or to fund agencies so they can grow. Mass rehab is currently helping but that service is limited to work related only. At this point I have two high functioning spectrum kids still at home, one with Aspergers. One has my rare syndrome (Duplication 12q), social/emotional delays, Tourettes with OCD and social anxiety. Due to the syndrome, I can not drive, I have hearing issues, and chronic exhaustion which requires the use of both crutches and a wheel chair. Yet we still have to pay for mass Health so i can drive and after six years have still not been able to access Social Security Disability. My youngest who will not be able to live independently, will graduate next year and what is going to happen after that is still up in the air.
Carol Moore, Early Intervention/ Early Childhood Special Education	Adult services to support independent living are seriously underfunded and frequently unavailable. Financial support available through SSI (a maximum of $733 per month, far below the poverty level) is so paltry that individuals must remain living with family members or go to institutional care. When family members provide necessary financial supports for housing, the benefits are further reduced. Those without family supports are subjected to poverty and isolation. This must change or huge numbers of young adults will never achieve independence and find ways to create lives worth living, participate in the community, and contribute to society.
Anonymous	Very poor outlook- no education or employment for most after high school no current after school programs- community resources are lacking. the quality of life decreases as the add kid turns adult and has very limited resources just look at the lack of summer school for kids with ASD, not only that there dis no after school social skills groups
Anonymous	Huge population aging out of school system. No provision of appropriate adult placement. Current system designed for intellectually disabled without ASD. Literally no placements available appropriate for severe autism in our state!
Anonymous	There is a huge gap in the kinds and amount of services that children with autism have when they age out of school and enter the adult world of services. There is little funding, poor transition planning, few employment services, little community integration and if adults with autism actually get services, they are extremely limited in nature and non-flexible. It is difficult to find service providers for adults, therapies for adults, etc., especially in rural areas. Example: if an adult with autism needs occupational therapy, they might have to travel an hour or more in each direction to get the service. Lack of supports for those living at home with parents is another issue. It seems that almost all of the funding to date has focused on children with autism, but these children grow up and the services and funding has not followed them into adulthood and families are really struggling. Rural areas are hardest hit. We don't need to find a cure or cause of autism, we need help living with an adult with autism in the family NOW!
Hannah Reed, MD, Yale Child Study Center	In parallel to my response to question 5, a network of integrated primary care clinics for adults with developmental disabilities would also improve care, continuity, and large-scale, longitudinal lifespan research for this population.
Heather Price, Parent of two children with ASD	We need more places for young adults to go, as our children age out of the school system. There are more and more children aging out each year. Eighteen through twenty five year olds have limited options. Where are the short term treatment centers where supplements are respected (and prescription drugs aren’t PUSHED)? Where parent/autistic chosen diets can be followed? Where individual treatment plans can be made? Where there are NO WAIT LISTS? Aggressive episodes don’t patiently wait for the wait list. Daily seizures don’t wait for the wait list. We and our children need help NOW. For those able to work, where are the supported work options? Where are the group homes? YES--- there are work options and there are group homes but again----- the wait lists don’t help a couple in their sixties in poor health who need to know that their child has a SAFE place to live BEFORE they can no longer care for him.
Anonymous	There is almost nothing for young adults on the spectrum once they graduate. In our county, for example, the state will provide money for a day program...but there are almost no day programs, and if you find one, they are programs in which the individual sits in a room and tapes toilet paper rolls together as arts and crafts. Good way to let the brain rot. There should be education programs continuing and/or jobs available, but there is nothing.
Anonymous	There is a huge and problematic lack of services and options for adults with ASDs. 90% of those with Asperger's Syndrome are unemployed. Many adults are in need of residential treatment and there are no available providers. Treatment options become more restricted as individuals affected by ASD age. Aging caregivers only compound a crisis situation as more families are forced to provide care.
Anonymous	Time and money are wasted on repeated studies of thimerosal. Put those resources towards helping adults obtain the skills to navigate society. Brilliant folks are being left behind for want of basic social skills.
Nina Boal	Services for autistic adults when needed.
Sally	When a child turns 18 services dwindle, why? Why aren't there more quality programs to service adults. Some of the programs I've seen are just poor babysitting services, I think there is room for a great deal of improvement.
Anonymous	adult services
Anonymous	Recreational activities are lacking and needed for young adults with autism.
Anonymous	To find affordable care for the adult with autism is difficult. The particular state I am from, has a 15 year waiting list for Medicaid waiver services. The individual I care for was not diagnosed until third year in college. 12 more years to wait for services. Schools did not diagnose Asperger's (now High Functioning Autism) back in those days. So Transition consisted of school just being glad the individual would be no longer their problem.
Star Ford, Divergent Labs	Disabled adults often get stuck in institutional settings such as group homes where their autonomy is limited, and there is no path towards gaining more autonomy; instead the mind becomes institutionalized. Work is needed to help the whole industry understand how people can graduate out of intensive supports and to have intermediate and lower levels. We need to change the model so that the economic incentive for the system is to build people's strengths rather than to keep them as a lifelong paying client.
Wendy	These kids need to be actually educated and taught real life skills. My son spent four years in an adult transition program that involved going out daily for fast food and walking around the local pier, sightseeing and going to the movie theater. There are a lot of people making a career out of these programs that do absolutely nothing and leave the entirety of care to the families. They do not stick to the IEPs and lie when you confront them about it.
Alice Ospovat	The world is full of functioning adults with careers and families who would have been diagnosed as being on the autism spectrum if they'd been born 30 years later. Many if not most autistic kids will be able to live and work independently as adults, if they have the right kind of social supports and education. That said, there's a serious lack of services for young autistic adults who are aging out of programs aimed at kids. They need more support in gaining independence, especially if they are from low-income families or families who are otherwise unable or unwilling to support them into adulthood.
Anonymous	For health, when a person has Husky insurance there is great limitations in finding specialists that participate, especially noting, dermatology, orthopedic, neurology & psychiatrist, Adult services can vary from being good to being a glorified baby sitting looking program. The more involved, especially if behaviourally, the harder it is to obtain quality programs that have low staff turn over and a high community access. Housing and employment are difficult in this economy and especially is 1-1 support is required
Carla Meads	Services should NEVER be stopped for any person diagnosed with Autism no matter what age they are! There needs to be subsidized schools/housing that will accommodate those with Autism. 1-68 children are diagnosed with Autism...that is a huge population and it is our responsibility to treat them, take care of them, house them for their lifespan.
Danny Raede, Asperger Experts	Adult services
William Craig	There is nothing available for ASD children after they turn 21, accept places that are nasty, and dirty. We have no idea what will happen to our daughter once we die, or become ill, and be unable to care for her. I have currently had to start working from home, so I can be here for her during Summer Break. Any and all services would be welcome from health to community integration.
Anonymous	As a parent of a 17 year old young man who was denied speech therapy and occupational therapy by our insurance company as a child, We need help with intensive interventions to meet his needs now! ABA and social groups are typically only offered for young children, but kids his age who were denied services when they were young still need the help. Public schools have failed him and others by not meeting his deficits and there is very little out there for this age group in regards to appropriate education. Without the proper education and services at the intensity needed to make up for all the lost time, this country will reach epidemic proportions of people on the spectrum who lack the foundational skills to succeed in life- don't forget about this group of people with ASD! The need is for more services to be available to all all ranges. Teens and young adults are the forgotten society within the spectrum. Years ago, when these kids would have benefited from the therapies and interventions that we now know are crucial (and now covered by insurance) were extremely limited and often were only an option if you could afford to pay out of pocket. These older children and young adults missed out then for early intervention- and now there is nothing still nothing offered to help them succeed socially during these transitional years and into adulthood. Again. Research is great, but it doesn't help those that have grown up while waiting for the awareness to catch up. Help teens and young adults with appropriate therapies geared toward those who didn't have interventions available to them at an early age. Teens and adults need services too! These services weren't available and/or covered by insurance when early intervention would've been the best option. It's not too late for them though. Social groups and skills training and educational interventions to address known deficits are crucial in order to lead meaningful and productive lives! It needs to be affordable to everyone!
Juergen Hahn, Rensselaer Polytechnic Institute	I would rank adult services as the most important topic of these.
Anonymous	I fear what adulthood will be like for my mildly affected kid, and I am extremely frightened as to what adulthood has ahead for my severely impaired nephew. If I thought services were few and far between between ages 0-5, they seem to be even fewer for adulthood. No one cares about special needs adults, they aren't cute anymore.
Jennifer Furlow, Autism Mom-Warrior	Anything regarding planning and services from age 18-death need major help...in every aspect.
ODESSA	There are lots of questions for services. Where can an adult person go !!!
noel benitez	The inclussion of services to adults with autism, it seems that once a child becomes old they are not cared as disabled by the establishment and everything focus on kids
Anonymous	More resources and opportunities for adults
Robert Daniels, Children's Clinic, LLC	Services for adults aged 22 and older are practically non-existent. Therefore, a comprehensive needs assessment and prioritization of efficient and effective supports is needed.
Ronnie Siriani	It is imperative that transportation be included in this discussion. Transportation for all people in varying degrees on the spectrum. Not only in terms of attending programs and for daily living but consideration of placing housing in rural communities and the access for public transit. Not only is this important for those with higher functioning ability who can take or be travel trained to use public transit but for those who must use a service like an ADA paratransit service which has limited service areas. If housing is placed outside the service area, it cannot be served by this mode of public transit for example. In trying to enhance the lives of people with disabilities, if they cant get there...there is no quality of life!
Kristi Stockdale, Parent	As our son is turning 18 years of age, we are finding that the research for this age group of individuals on the AS is almost nonexistent! Research on the effectiveness of ongoing Behavioral intervention, social skills learning, vocational training, housing, safety and supervision needs, community programs, and longitudinal studies that further define AS over the adult lifespan are all needed.
Joan Sheridan, parent	My son is 50 very limited speech works at a real job and contributes towards payment for his full time job coach. I think he would benefit with ABA but I can not find any one who is interested in providing this to an adult. If I do find it I would appreciate it if it was covered by medicare
Lesly, Parent	Services must care foe our adult children who have been damaged by vaccines.
Anonymous	These programs are not available in all states. They should be. Parents shouldn't have ever to worry what will happen to their adult children if one or both parents were to die.
Anonymous	Adult services. Children reach 21 and they are all but abandoned by the system. Provides for services after a child turns 21. Children and families are left stranded in many cases
Wil Beaudoin	Adult services
Richard Kaplan, Resource Education Solutions	Although an item on the IEP, transition services are not taken seriously.
Anonymous	Lack of general service s
Anonymous	Adult services should be high quality and similar to school aged services---not babysitting.
Maureen Durkin, University of Wisconsin-Madison	How do we ensure that services and supports are reaching those in greatest need?
Anonymous	Adult services are a concern.
Michael Buzzard, Parent of children with Autism Spectrum Disorders	Lack of resources and access across the board on these.
Mariluz Sosa	Access to higher education
Anonymous	Programs need to be put into place to support adults with autism beyond their 20s. Caregivers need help as well as parents need a plan for caring for their children with ASD once they have passed.
Anonymous	adult services; effective treatments across all ages, knowing what works for whom and when.
Anonymous	More and more services for young (and not-so-young) adults are needed. There are not enough supports in place to help these individuals navigate the world after the cliff of 22. They need ongoing supports and services.
Anonymous	Autistic elderly adults are out there who need services now, not just the future, and have been here all along in societies. This is not a new disorder. Improved screening could also help research current successes autistic elderly are having, as well as problems. This will also help the future of the current generation of autistic young people, who were identified early. Again, social scientists familiar with researching other minority cultures within our own, might be very helpful here. Many older autistic people would likely love help others to suffer less than they have; why not recruit more to help in such research, design of community centers or activities in regular community centers, and so on.
Andrew Gammicchia	Adult services are lacking for the large number of individuals with autism entering adulthood.
Ellen Riehm, Parent	Services for young adults
Kelly Valenta	Older children and adults
Claire Dempsey	Services for adults aging out of the public school system
Anonymous	Services for teens and adults.
Anonymous	With so many children affected by autism, we're going to soon be a society filled with adults dealing with autism and more education and resources are needed to help them live productive lives and contribute to society.
amber dorko stopper, ninjagoat nutritionals/fatCoffee	adult services
Mary Nally	Adult services
Anonymous	Life span issues and services.
Debra Janison, parent	I am most concerned about having a one-on-one assistant to accompany my son when he is out in the community after he turns age 21 and support is no longer available under the IDEA.
Jennifer Kiney	More services for teens and adults.
Sharon Howell	most important topic is adult services - these kids are all now becoming adults and the tsunami we all warned you about is upon us
Beth Thompson, Milestones Autism Resources	Lack of services for adults with Autism, particularly adults that are deemed "high functioning" or need different supports than have been traditionally offered to older DD populations.
Anonymous, none	Service, access, and utilization of service systems for recently over 21 and also for elderly late diagnosed. Most important to provide affordable diagnosis for elderly who need autism diagnosis to access appropriate services
Sylvia Diehl, University of South Florida (Retired)	Adults have precious few options.

Improve access to diagnosis for adolescents and adults

Respondent	Response
Anonymous	More support and resources to help undiagnosed adults get identified, helped, recognized or diagnosed? Useful for autistic people, but also for other mental illnesses. Current social stigma of mental illness, typically means people only get diagnosed after extreme suffering and failure in their lives. Many people are likely suffering directly due to their mental illness, limitations and disabilities, but are being shamed by society and blaming themselves.
Jim N, Parent of a fomer toddler diagnosed with autism	The ASD diagnosis must be certain, given we are in the age of medical records that can get hacked. An ASD diagnosis would make it difficult for an adult to get employed or compromises their privacy. There must be screening to ensure people are diagnosed with good cause. And the screening should thoroughly review the borderline ASD person

Need assistance for adults with autism and their families in navigating available adult services

Respondent	Response
Anonymous	Working in adult services is a broken system. Too many players, too much bureaucracy, YOU have to know what they Should know so you can get what you need for your child. OVR is a disgrace. Paper pushing. We need better support services for individuals to be able to be employed, sustain jobs, and live where THEY want to live. Freedom of choice.
Tracy Robbins, mother/care giver	research the impacts on a single mother caring for her adult child, living in poverty, not being able to afford daycare services to enable her to get a job or go to school to better their lives. We are stuck, and then we get beat up physically by the adult child because of behaviors due to poor sleep, if any. There is no financial planning when one has to rely on SSI and parent care provider pay to live on. 24/7 care= 108 hours of pay a month= poor quality of life. Research that.
allison velarde	This is a problem as the autistic population has exploded in the past 20 years. States need to do better in setting up PUBLIC awareness for services that are available. Word of mouth is how it is currently done. My MSC learns more from me than I do from him.
Anonymous	Focus on services for the parents that have to work and figure out who will care for their child. There are no special needs day care so unless you can afford a private service it's nearly impossible to work unless one parent works days and the other works nights. You can't just leave these kids with folks that don't understand the condition. There needs to be more help available to parents so they can continue to be productive working members of society.
Anonymous	In general there is a lack of research and public understanding about adults on the spectrum. Many resources and therapies are geared for kids as opposed to teens, young adults, and older adults. I can't speak first hand about the needs of this age group, but the fact that I don't know much about what possible resources and hope there is for my child when he gets older speaks volumes - there's a dearth of information if I, as someone within the autism community, has little knowledge, let alone those outside of the autism community.
Faith McGinnis, parent	I wish I had a more positive answer for this question. My son is 12 and it has gotten harder and harder to get any kind of help. I worry as he gets older he will not fit in the neurotypical mold for jobs and housing and will not thrive. This is a problem as not all parents have the ability to care for their autistic children through adulthood as elderly aging happens etc. Then who does it fall to. Having colleges that are autistic friendly, dorms that are for autism and Community programs will help but programs catering towards helping parents prepare for adulthood would help too. How do we do all of this and get through puberty and the social rigor that happens at grade 6 and up. That's the big question. How do we teach about daily living skills and not feel we are sending our children out to the "wolves" to be taken advantage of? My biggest fear is my son will be taken advantage of and no one will be there to help.
Anonymous	Autistics who require life-long support are split into haves and have nots. The "haves" are under state waiver programs where they get funding to try and attain a reasonable quality of life. The "have nots" are those who are unfortunate enough to have uneducated parents, uninformed parents, parents who had to move out of state for a job, or parents who are uncaring. In any of these cases, no one would have put the autistic individual onto the state waiting list for funds. So, through no fault of their own, the autistic person is relegated to long days of lying in bed or sitting in front of a TV, or pacing aroung a room, because they have no funds available to them for ANY activities. SSI provides shelter and sustanance. Beyond that, they just exist. Ending this unfair and deplorable situation should be the top priority for our country.
Kelly Walmsley	You need to add respite care for parents to one of these lovely lists you are compiling. However, my answer to question 5 applies here. Beautiful wishful thinking on your part, but my son will have those things only if I do the research and put something in place for him myself. There is no help for us in Central Illinois.
Marsha Salome, Parent to 15yo son diagnosed with autism at 3	I NEED this info. What I seek are the following: information and laws about when to transition from constant monitoring to independent living; plenary guardianship; information on housing; wait list info; what happens with SSI benefits; how does obtaining employment, if applicable, change benefits and affect SSI; life insurance possibilities (because it can be near impossible to obtain).

Services and research should take into account the perspective and choices of adults and their families/caregivers

Respondent	Response
Kai, Autistic adult	Listen to autistic adults, because we are the best resource.
Anonymous	Unless you actually listen to autistic adults, NADA. Call me. I am ill, my kid probably gave me another concussion and I have no energy to write it all out.
Patricia Harkins, Harkins and Associates	Only recently is there any focus on adult life. Just like in school, there needs to be a range of options, from sheltered living to coaches in the professional world. There are a lot of doctors, lawyers, accountants, and college professors who are on the spectrum who could use help in other areas.
Jade Sands, autistic adult	As an Autistic navigating the transition to adulthood, California's Regional Center system and Lifesteps, which is a program the Regional Center hooked me up with, have been very helpful. Cognitive issues make things like finding a doctor and applying for aid very difficult, and having a support person has been immensely helpful. I am trying to major in child development with the goal of becoming a special education teacher to help others like me, but being successful in school has been a struggle. I am fortunate enough to have a minimum wage job, but even that is difficult because of interaction with the public. There is virtually no higher education support out there, for learning necessary skills like time management and study skills, and college professors can be not very understanding of different ways of learning.
Dr. Tanya Skalecki, The Arc Mesa County	Early and school aged ASD interventions through inclusionary practices, mental health services and proper ASD educational identification should be top priority. Training for school staff, law enforcement, businesses and universities on "What is ASD?, Effective strategies for working with an individual with ASD (In schools, community and on the job)? Advocacy training for individuals with ASD.
Rebecca	Many autistic people grow up and lead fairly normal lives but again, they are typically left out of the conversation on how autism affects people, left without any support or services, and they are often invisible to most of the world even though there is a large number of them out there.

Improve community integration/inclusion, including social isolation and community education about ASD

Respondent	Response
Anonymous	As this population exploded, we began to provide different services when they were being educated and now this population is growing up and becoming adult and we don't have a plan to acclimate them into the community successfully.
Bruce Tanquist	I would like to see best practices developed to minimize discrimination against people on the autism spectrum in job applications and interviews, in job performance evaluations, and when evaluating disciplinary complaints in the workplace. Goals include preventing qualified applicants from being rejected, preventing undeserved poor job performance evaluations, and preventing undeserved disciplinary rulings for people on the spectrum. Social abilities that are difficult for many people on the spectrum should not count against a person unless those abilities are central to the job position (such as public relations). Discipline cases relating to job performance or conflict with other employees should include consideration of accommodations that may resolve the issue.
Anonymous	Community integration, including in employment and housing.
Alanna	The future holds a beautiful autistic community of confident and accepting autistic adults. That's the thing to find and get. That's the thing that growing it could help improve services so that they actually help autistic people instead of conditioning or tranquilizing us.
Anonymous	As we move toward increased community involvement and integration there needs to be a governing body to insure private providers are offering safe and high quality services.
Heather Baylies-Grigoreas	community integration
Megan E Sova-Tower	Again, educating the PUBLIC would help greatly when it comes to transitioning to adult services, vocational training, employment, and financial planning.
Nancy Roberts	With the situation being what it is at the moment. It does not look very promising. General education and knowledge is nil. The judgements of people and assumptions remain the same the future looks dark.
Stacey Ireland, Parent	Community integration
Anonymous	It would be really awesome if people stopped thinking of autism as a problem and started working to accept us. So what if your kid flails their arms sometimes? Why should that be unacceptable behavior? Efforts should be made to educate the public, and especially potential employers, about what autistic behavior looks like and what it means, about the fact that it's not bad or scary, and that's it's not rude or unacceptable, it's just the way the person's brain works.
Cindy Fogle	It is important to promote awareness of autism in adults as provide opportunities for services for adults with autism spectrum disorders.
Lissa Probus, ASBG	The gap in services to allow community inclusion is devastating for my family and others and must be addressed.
Pamela Harbin, Education Rights Network	Community integration planning should start early. Focus on autistic people of color.
MRJ	Given the prevalence of autism, it seems that two things could help: 1) ensuring school systems can create learning environments that support unconventional learning methods; and 2) educating employers to ensure they understand the influx of employees entering the marketplace may have different needs but still can be successful members of society.
Anonymous	The inclusion of autistic people in the mainstream -- acceptance and tolerance instead of so much emphasis on diagnosis and treatment
Dyan Spruill M.A., CCC-SLP, The Floortime Center	it is also important to recognize this children and adults with autism spectrum as different, not disabled, and treat them accordingly.
Megan	My main concerns are for community integration/acceptance. ASD quirks can be misconstrued as malicious or inappropriate.

Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)

Respondent	Response
Charlotte	I just want to say yes to all of the above. Adults on the spectrum are gravely underserved and with some support and guidance most can become contributing members to society.
Danielle Oakes	all of the above
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	All the aspects of this area must be a priority in the years to come. "Care for autism" instead of "Cure autism now"
Jennifer Hane	All
R. Walker	Yes. All those topics are great!
Wendy Wolfe-Womack	All of the above!
brandon miller, autistic adult	All of the above.
Anonymous	ALL OF THE ABOVE!!!!
Lynda Dominal, parent	Again all are important and what is most important in regards to services is combining services to an individual need.
Becca Lory	ALL of the above. I repeat, ALL
Anonymous	All of the above. All people with a disability need more support around finding a job. Employment agencies need more training on helping find and get jobs for people with disabilities and also help them with vocational training, community colleges etc. Need to have some open conversations with big business to see how we could encourage their hiring of people with disabilities. And do a marketing campaign for awareness. Much like have done for Veterans.
Anonymous	All of them
Anonymous, Au	All. Current research, services and policies in these areas are all inadequate.
David Radford	I'm concerned about the future for Autistic adults. I tutor children with varying severities of Autism, and most are facing a future living with their parents until the parents of at an age where they can no longer care for the person with ASD. Then the person with ASD is left to the care of other family members or the state, often with sad outcomes. We are failing an entire demographic of people.
Chris Lacey, Autism ALERT, Inc.	ALL OF THE ABOVE ARE HUGELY LACKING!!!!!!! At least for persons on the severe end of the spectrum. DESPERATELY NEEDED: - Assisted living facilities with 24/7 care / supervision - Meaningful adult day programs - Housing - Modified job training and education - Modified jobs SERVICES FOR THE ADULT AUTISTIC POPULATION (AND THEIR FAMILIES) ARE SEVERELY LACKING. Kids with autism are "cute". But we are "adults" for MUCH longer than we are children. This country is not in the least prepared for the upcoming influx of severely affected individuals with autism when their parents are no longer able to care for them. There's insufficient housing options available (and that's a vast understatement). As such, and NO ONE WANTS TO HEAR THIS, but I believe there will be a large increase in parent-child murder-suicides. The despairing lack of housing options for severely affected autistic teens and adults, especially as both parent and child age, is glaring. And, with no safe place for their child to go after they die, I foresee that their desperation may lead them to choose murder-suicide as opposed to leaving their beloved child behind to an unknown fate. THIS NEEDS TO BE ADDRESSED. PLEASE TAKE NOTE. (d) ASSISTED LIVING AND HOUSING. This country is not at all prepared for the upcoming influx of severely affected individuals with autism when their parents are no longer able to care for them. There's vastly insufficient assisted-living and housing options, especially for the most severely affected. - Police education so police don't mistake a teen or adult with autism as acting suspicious or being non-compliant or not following directions....- LONG TERM ASSISTED LIVING AND HOUSING: This country is not at all ready for the vast influx of adults with autism who need 24/7 care and supervision after their parents can no longer care for them. - DAY PROGRAMS FOR ADULTS. They have nothing to do after high school ends, leaving their parents unable to work because they have to care for their child.
Cindy Montgomery, Teachability	Modifications, modifications, and modifications. In all areas.
Wanda Ross Padilla	All concerns listed above for research!!
sharon, 501-c-3 Momma	Okay here we go with this notiion any of above topics are available to our childern there are no services nothing at all ever get it you all are stealing our children's lives hopes and dreams while you sit and chat and workshop and chat some and workshop and build resources so you all feel better STOP and provide topics metioned first and foremost and then you all can have at it and leftovers like you dish out to our chidren please come and stay with me just one night or weekend and you listen to phone calls to agencies providers you call every I mean every single resource that you pretend helps me and you might get the pain and sickness my husband and I feel daily not just for my twins but my daughter who is affected for the rest of her life by your misuse misunderstanding of our lives
Anonymous	Having pre teens, this is on my mind. I have not researched yet.
Grace McCusker	All of the above
Anonymous	Having a goal at a young age and giving hope for a future is important. I have so many doubts and do not know how my children will live as an adult when they can't work. I do not have the resources or income or knowledge to deal with any of these issues.
Jenn Carerros, Mom of a child with autism	each of these topics are a priority!
kathleen Madigan, NBCT ECGEN 2nd grade teacher, grandmother of an autistic boy	Wow we haven't got this far- he is 5. Please work on this- it scares me looking at it.
Anonymous	All
Anonymous	All very important.
Minerva Adame	All of those topics are important for the future of adults whom have Autism. To provide hope and positive outlook for adults with Autism, focus on therapy (st, ot, aba, social skills), education, work, financial planning, and housing. Autism organizations and resources need more funding. As well as more awareness, connection, and acceptance.
Parvati	This should be a top priority area for research, provision of services and institution building. We have increasing numbers of adults with autism and no roadmap for them at all. Vocational training, employment and housing are particularly important.
Jackie, Parent	Help everything! We are all concerned what is going to happen as we age to our children. Find them training, educational services, HOUSING is a big issue with government cut backs, community integration of all ages.
Anonymous	We have a major crisis brewing. The number of new cases is staggering.
[Minor/Dependent Name Redacted]'s Mom, Parent	This issue is so important, the numbers of Autistic individuals who are becoming adults is staggering, and once they turn 21, services fall to almost Zero. Housing, Jobs, Community Support, all have to happen!
Anonymous	All of the above
Lacee Parod, Parent/school employee	All of the above. Quality of life at all ages is very important. Transition into adulthood is difficult for the child and parents. More services should be available.
Anonymous	all of the above
Anonymous	All!
Anonymous	I think these topics are the areas I personally see the most discussed/offered. So I personally think these topics might need to take a back seat compared to some of the others.
Anonymous	All of these! Far more than 'finding a cure.'
Angie Calhoun, Mecklenburg County Pubic Schools	If done correctly and not cookie cutting the treatment options, the future looks bright for many on the spectrum (since the spectrum is so vast these days). Any of the above-named SERVICES in your question are beneficial and vital.
Nicole	All the topics listed are of huge importance to those of us with children who will soon become adults dependent on the care of others.
Liza Krassner, Parent and UC Irvine Public Health employee	All of the above.
Anonymous	All of the above
deborah weiss	all of them
Susan Walton, Outdoor Autism & Special Issues School	All of these are very important. I cannot pick one but believe more funding in this area overall, to effectively address each component, is critical.
matt, parent of ASD child	Truly this is important
Marge Blanc, Communication Development Center, Madison, WI	Everything!
Michelle Baker	all adult services
Kathryn Hedges	All the suggested topics are relevant. We have ignored adults because the parent voices have been the loudest. Autistics should not be warehoused or dismissed as useless eaters.
Anonymous	All these
Kristine Croto	This absolutely has to be the #1 priority. Kids become adults, and there is NOTHING to help them when they are out in the world. Absolute, top priority, no question.
Anonymous	All of the above need equal priority. What happens when no more school, nowhere to work, no where to live, no transportation, no further education, no more interaction with people, no recreation. These matter most especially for non speaking and id individuals with autism. They have a lot to offer such as attention to detail , task oriented and compliance. Good people deserve a good life.

Improve the quality, accessibility of housing options

Respondent	Response
Deborah Bogin Cohen	The most important gap in services - all over the country - is the lack of housing for autistic adults. The need will quickly become more acute as the one in 68 children now afflicted with autism mature into adulthood. This unmet need makes parents of autistic children parents who cannot afford to die. For a loving parent, there is no worse pain.
Karen Delaney	I was recently told by my son's medicaid service coordinator that the only way we could get him housing is for him to be deemed "homeless". In NY state there is a grading system 1. are homeless 2. impending homeless (living with a elderly parent) 3. everyone else. So unless we give up our son to the state we will not be able to get him a residential placement when we need it - for instance in case we died in a car accident since we've already found someone to accept his care if needed in such a case. This is clearly ridiculous thinking but apparently there are so few residential sites that it is the only choice. My son is 19 and there really isn't anything that he will be able to do after 21 - he's more severly impaired than most and the choices are so limited. This area needs to be explored for the more severly impacted ASD adults.
Lynn Decker	Again, much of what is available, and directing policy and state practice provides a clear directive to support maximum independence in an environment where necessary legal and operational frameworks and current funding levels will push vulnerable persons into unstable and underfunding housing arrangements. This is likely to produce an intolerable level of trans-instutionalization to correctional settings, the most expensive and most traumatizing of all possible outcomes for adults with autism. The HCBS Settings regulations are overly restrictive in terms of specifying acceptable residential settings that may be supported by Medicaid funding. While I appreciate the aspiration of optimizing independence for each eligible person who seeks that, the actual models for achieving fiscal and operational stability for residents and the programs that support them have not been worked out. Many in the population to be served do not demonstrate skills upon which independence relies, and the regulations show little to no recognition of the lack of legal and other institutional models to support greater independence by folks with significant cognitive and communication impairments.
Suzannah Williams	Families are still worrying about getting basics covered like housing, safety in relating to emergency personnel, and obtaining any service support at all after public schooling ends. Education- Adults with developmental disabilities have much learning they can continue to do with structured supports like educational day programs.
Anonymous	The most important priority is to provide additional funding to build more group homes.
Ken Ashley	Housing is poor and the caregivers generally are people that are most likely unemployable but get jobs with the private companies that have subcontracts with the states. More money should be provided and more monitoring should be done by the states if they are going to subcontract out their responsibilities.
Robyn Smith Tweedy, Mother of a 13 year old boy who has severe Autism and OCD	I am very very concerned about where my non verbal son will live. We are old(ish) I had him at 42 and now he is 13 and I am 56. I am a young 56 but every day I worry about what will happen with him and I cringe to think that he could be abused maybe one day by a caregiver in some government set up home by lowly paid workers who are not happy about their job or their lot in life with having to take care of people like our son. We know all of his behaviors but we have grown up with them and dealt with them and love him regardless. He might not be so lucky one day to have someone who cares for him regardless one day. His behaviors can be very difficult and he is non verbal so he couldn't tell someone how he was being mistreated. Also he needs somewhere productive to go every single day so there should be some awesome business owners who have the type of company who could manage these people and their behaviors and still have a successful company that can give these people meaning in life and some money to survive and friends and people to see every day
Anonymous	Housing options for adults with autism.
Donna Miglino, Parent	We need more, and better staffed adult residential options. Our children will someday be grown and we will someday be gone. We need to know there are possibilities for our children, that will keep them safe and give them a decent life.
Linda LaPointe, JERICHO Bureau for Exceptional Children and Adults	Housing - with the new laws in group housing being considered segregation how will the large number of individuals with moderate to severe characteristics/symptoms be served without crushing our state programs. Individuals that were traditional served by this funding (Down syndrome, Williams syndrome, Celebral Palsy, Stroke victims, etc.) were not collectively as large a number as the number of individuals who will need substantial support now and increasingly in the future.
Anonymous	There is a huge gap in specialized housing, schools that teach life skills etc for adults on the spectrum. A plan to address this gap needs to be made and implemented.
Colette McCadden	appropriate housing options
Anonymous	Survey adults with autism. How many are there? Are there less than children with Autism? Why is that? What are their needs? Are there homes where they can be cared for and work programs to help them give back to community? Fund Day programs so families can work themselves instead of having to drop out of the labor market to care for their families as there is no where to take them for care. So the Federal government loses 2 individuals who can not work. Then if families are having to care for their families without federal funding give them a tax credit, families are crippled with the cost of caring for disabled family members.
Hollister Sykes	Aging Issue: Current group homes for adult autistic are not equipped to handle age related problems. The organization that cares for an individual while he is healthy, or has temporary medical problems, is not equipped to deal with care requiring physical assistance, nursing, and treatment other than dispensing pills. However that organization knows the participant best after years of experience with him, especially if the person is non-verbal. So that organization should have the continuing care responsibility. That requires that current group home residential programs add an adjunct nursing and medical care facility so the present care organization can continue oversight. UNDERLINE LAST SENTENCE.
Jill Escher, Escher Fund for Autism	The autism housing crisis is growing more acute each day. Here in California we are losing, and not growing, placements even as the adult autism population is exploding. 94% of Californians with autism live at home with family. What will happen when parents become infirm or die? There is no plan whatsoever. Housing that an ASD adult on SSI can afford is nonexistent, and the support services are unreliable owing to chronic underfunding and such low wages that finding staff has become nearly impossible. A two-bedroom unit in our SF Bay Area rents at about $2,400 a month, yet an ASD adult will have only about $300 to spend on rent for himself and his caregiver. Further complicating matters, new HCBS rules threaten to impose draconian and discriminatory restrictions on the environments in which ASD adults can reside and still received necessary support services.
Anonymous	In our area, there are not very many choices for adults that need limited support but can't live totally independently. Often times they end up in a group home that does not specialize in autism, so they really don't get the support they need or the opportunity to become more independent and self-determined.
Stacey Phelps Anderson , Parent of three teens w/ diagnoses of either Autism or Aspergers	community living services, as well as supportive residential villages such as the ARC village in Jacksonville, Florida where this community can be as independant as possible but still have supports in place where needed.

Long term and financial planning are a priority for research, services, and policy

Respondent	Response
Julie, Mother of 4 year old newly-diagnosed with autism	With such a young child and a new diagnosis, this is the area that is the scariest and the most daunting. There seem to be many services (albeit expensive and delayed) to help children to address different presentations related to their autism. But the issue that has woken me up at night several times per week since my daughter's diagnosis is this - "What happens to her when we go?" At this point, the evidence out there about prospects for a healthy, independent adulthood for an individual with autism seem to hinge upon wishing for a miracle rather than relying upon any proven resources.
Kim	IMO, this is the most important topic right now in autism. That huge flux in autism diagnoses 10-12 years ago will soon be young adults aging out of the school system, or "falling off the cliff" for those with significant needs. Many families are willing and happily come to terms with providing lifelong care for those affected by autism but they need more help with the costs associated with making an appropriate living situation i.e. adding space to existing homes. In the long term, it is far cheaper for the family to provide care with financial assistance than to have the individual placed in a group home. A financial framework that makes this possible is a priority.
Rose Calloway, GaLEND trainee	Transition of care from aging parents to sibling
Shannon Young, University professor	The greatest fear of parents is what will happen to my disabled child following my death. Many people with autism need life long care. How will this happen? Note a promising treatment is neuroplasticity that can help many people with brain dysfunction heal the issues that affect their functioning. See the work of Barbara Arrowsmith Young in Toronto Canada. It would be fabulous if the Arrowsmith Program were instituted throughout the public school system so as to help the learning disabled to no longer be learning disabled.
Cindy Axt	Financial planning is big, because even people living below the poverty line don't realize they can squirrel away a little bit each month to plan ahead for their child if given the right information.
Anonymous	Legal issues.
Millicent Leow, Mom	There should not be a cap on what an adult with ASD can earn. For every penny earned, pennies are taken away from SSI.
Penny Githens	There is currently no good system in place to help my son when I die. He doesn't have the executive functioning skills -- something else that should be researched -- to manage on his own. While my son may be able to hold down a part-time job, do his laundry and cook for himself, I wonder what will happen if the toilet backs up. I wonder who will help him decide that his work pants and work shoes need to be replaced. I wonder who will help him understand everything his doctor is telling him. When he's fifty and has his first colonoscopy, who is going to be there to both explain it to him, help him follow the prep protocol, and bring him home after the procedure? Who is going to monitor whether or not he is flossing his teeth on a regular basis? Who is going to step in if someone steals from him. Who is going to help him continue to connect with his extended family members? Who is going to help him if he does something that gets him into legal trouble? We need some type of system in place that truly cares for people. We need to continue services for individuals with autism after they exit secondary school. They continue to need social skills training, job training, and functional skills training. The low percentage of adults with autism who work is a national disgrace. We need to worry most about overall infrastructure and how to meet the life-long needs of individuals with autism. And this needs to be done in a way that fully integrates them into the community -- jobs, recreation, friends, volunteerism, etc.
Rhonda, parent of Asperger's child	Parents of autistic kids walk a fine line of seeing their kids become "almost independent." As parents age, services need to become available to address needs that continue into adulthood. For example, a caretaker illness means "routine disruption" to an autistic child or adult. Who makes sure meals, meds, laundry, transportation, and other life needs are met? Society is planning for aging, but Aspy needs are often unknown until their are problems. Similar to other mental health populations, they seem independent until the caretaker is unavailable. Needs are often discovered after there is a problem or tragedy. Agencies need to be prepared to step in and take over. Aspy's may be unwilling to pay for services, as they won't understand the actual need or be able to deal with this on their own. Parents don't know what to do to plan for futures as we worry about our own medical bills.
Warren Schaeffer	Today we are living longer and longer, we need to address the situation of individuals with autism spectrum that services needs provided and to be tax-deductible in a tax-free savings accountsuch such as the ABLE act. Services get more expensive as the years go on.
Wesley Harrison	My son is 35 years old. We expect he will be on the Medicaid Waitlist at least another five years. His parents are aging and have health problems. We don't know where he will live when he can no longer live with us. We don't know who will be sure he goes to the dentist, his medications are refilled, clothes and shoes are bought, food is prepared, the bills are paid and daily chores are done when we are gone. Even more worrisome, we don't know who will do the paper work required by Social Security and Medicaid to maintain his benefits. When the time comes, we don't even know if we will be able to find care givers to take over from us, who are willing to work for the wages set by Medicaid. We can't move to the retirement home we chose long ago because that would take us to another state, where we would have to begin the long process all over again, since Medicaid Waivers are state run. Help finding an appropriate job and job coaching, housing and support for daily living and someone to take over legal, financial and oversight matters from the parents are vitally important. Which is more important changes over time. In the end, when the parents are gone, or incapable, someone needs to be a manager to employ caregivers and attendants, oversee health care and manage financial and legal issues, including benefits. That's the big worry. Who is going to care about my child and ensure things are done in his best interests.
Kristina, Project Youth Learning and Leadership	Parents are not planning in realistic ways for the soon to be adult children with ASD. More coaching for parents on how to support independence for people with ASD
Meridith Myers, Tanager Place	Long term cost of treatment (or lack there of) and the effects on the community and individual needs to be looked at and addressed.
Robin Davis	I am concerned for my son and what will happen to him when I am gone. Currently there are no decent resources for him .and I can not scan not work full time outside of the home as he can not be left alone for long periods of time. Where will he go? He is brilliant ut no school will take him due to serious anxiety.
Anonymous	aging
Liza Krassner, Parent and UC Irvine Public Health employee	As a stakeholder, I have seen gaps ' in long term planning for an aging ASD population.

Focus should be on early intervention or developing effective treatments, adults/lifespan are not a research priority

Respondent	Response
Seth Bittker	These are tough questions. I do not think research into these areas are likely to bring great gains. One really needs local involvement, funding for programs, and common sense solutions - not research.
Anonymous	With enough support to educate people with ASD and HFA, people can live relatively normal lives. Having services early and support throughout the educational process helps a lot. Without structure in place for providing those behavioral support services, kids are left to fend for themselves and often (in the case of women) fail to achieve what they are capable of accomplishing. Rock stars like Dr. Grandin got where they did by having the support of parents who knew they had to go the extra mile. Kids like mine who "pass" for NT, like I have my whole life, might not be so lucky if they become stuck in a system of round holes. All of the above services are necessary for survival and most of them are NOT taught in traditional schools where emphasis is generally on passing the test and not serving the child. These issues span more than just special needs kids. By serving the ASD and HFA population, the entire generation benefits longterm.
Anonymous	My child is 5 and thinking about him being an adult now is scary! I feel that unless we really start getting a lot more funding and programs in place now for the younger people the future for adults on the spectrum is not good! Early intervention is supposed to be the key for reducing costs of future care, how can this be achieved with the funding available currently??
Elizabeth Farris, Dallas ISD/Dallas TX	If we can effectively support and educate students, beginning at very early ages, they have the best chance to be productive adults, participating in and contributing to our society. We could reduce the need for services for students when they enter the marketplace if we would invest on the front end and provide the supports needed to enable those teaching students to understand what to do to enable students to be independently successful.
Lindsey Craven	AT this time I focus on youth transitions from birth to pre-ed to elementary and the transitions into middle school then into high school. There is already so much focus for the transitions into secondary learning and work force but not much for the younger age transitions.
Howard Habler	Cure! Never give up hope.
Jen	When a child is diagnosed with ASD at a young age, we need to do all we can, aggressively, so that we can help improve their quality of life when they reach adulthood.
Michele Tryon , Healthcare provider	Most of my work is with parents of young children, however as "recent studies have revealed the tremendous service needs within the community, with data showing that young adults transitioning out of the educational system frequently lose their services access and often have limited opportunities for employment and independent housing." it is important to address the lifespan needs. All of these young children will be young adults in the near future. And if we address their needs as young children appropriately, many will be able to live independently with supportive services.
Parent	These are all huge problems. But they can go away if we can get to effective treatments. Then we would have the relatively simple issue of training and assimilating our loved ones into society and training them for whatever they show the greatest aptitude in. That would be FUN compared to spending years training or attempting to train them how to tie their shoes, how to eat properly, personal hygiene, etc.
Anonymous	All of these need a lot more emphasis. Let's not waste time looking for a cure for autism. Let's put supports in place that will enable them to live as adults, to work, pay rent, enjoy life. Please focus on these areas more!

Need for a larger, better trained and compensated workforce for adults with ASD

Respondent	Response
Robin K. Blitz, MD, Phoenix Children's Hospital	the lack of adult medical providers who are comfortable, competent and confident in providing ongoing medical care to adults with ASD and other developmental disabilities, including PCP's and mental health providers.

Research and services to improve health, medical care, safety and quality of life across the lifespan

Respondent	Response
VaxXed, Autism Media Channel	Healthy and quality of life is the most important research, service and policy issues. There is one study that can tell us this data and that is the unequivocal comparison of vaccinated versus unvaccinated populations. Analyze subsets of data including but not limited to risk of: autism, cancer, diabetes, food allergies, life expectancy, prescription drug use, alcoholism, mental disorders, etc.
Brandy Crainer, Autistic adult	I'd like to see more research on how to prevent autistics from being abused, especially by caregivers.
Amanda Mantua	I fear for my child and what will happen to him when I'm no longer there to care for him. Will he be able to survive? Who will be there to make sure he's safe? He'll never be able to live on his own and eventually he'll outlive both his parents. How can we be assured that he'll be able to manage in a world without us? Who'll pay for it? Will he be abused or taken advantage of? These are the nightmares ever parent of a child with autism lives with on a daily basis and it's a horror none of us should ever have to worry about.
Anonymous	Whether or not autistic persons should get married and have children
Ms. G	True autistic adults are limited and their attention to growth, active lifestyles and quality of care suffers thusly.
Anonymous	Health and quality of life across the life span
Julia Biagiarelli, Easterseals	health and quality of life across lifespan
Anonymous	health and quality of life across life span
Kathy Bentn , Coaching for Aspergers	This is a growing area but we will need more services to educate and support relationships of adults with aspergers. So many marry and divorce. We need to help teach the adults with aspergers things they can do before they enter into marriages as well as educate their potential partners. My concern is the differences bw autism and aspergers. The aspergers community needs help for the caregivers and spouses of adults with aspergers. These adults didn't get the help and support that children have these days. Most marriages to adults with aspergers ends in divorce. There needs to be support in place for spouses and anyone in relationships with these adults. Coaching/support for caregivers and adults in relationships with adults with aspergers Anything with regards to education and support for adults with aspergers. They have learned coping skills for years that are hurting their intimate relationships.
kimberly williams	quality of life across the lifespan
Mary Leathers	Health and quality across lifespan
Anonymous	Health and quality of life across the lifespan
Monica, Monica L. Kounter	I worry most about my son's life as an adult. He is extremely high-functioning in terms of intelligence (9 years old and programming and trouble shooting computers), but his safety awareness, executive functioning/memory skills are almost completely lacking. All I want to know is that he can lead a safe, happy life, with a job he loves, and someone with whom to share everything. His behavioral and sensory issues also impact him on a daily basis. It does not matter how well educated he may become, if he can't handle the world, with it's responsibilities and constant change.
Nancy Shaw	Prevention of illness by eliminating unsafe vaccines.
Anonymous	health and quality of life across the lifespan
Safa Rashtchy, Parent	Quality of life issue is very important, as is research on how adults with ASD react to the passing of their parents and family members, and how they can be helped.
Tammy	Health and quality of life
Anonymous	Health and quality of life across the lifespan. Also helping all affected to find their skills and talents to be a utilized and understood asset to the community
Laura Walls	Health and quality of life. Giving all people with ASD a chance to thrive.
Kristie	Quality of life
Brian Kelmar, Parent of son with ASD	People with ASD being caught up in the criminal justice system.
Leslie Phillips	Health and quality of life
Glowyn Roughton, Emg consulting	Quality of life across lifespan
Anonymous	Outcome reports on quality of life for individuals not in group home settings would be a helpful guide.
Parvathi Gontina	healthy and quality of life across the life span
Paula Taylor	Health and quality of life
Michael Hannon	health and quality of life across the lifespan, with particular emphasis on healthy sexual identity development.
Margaret	Health and quality of life across the lifespan
Emily Ryan	Health and quality of life
Jessica	Health and quality of life across the lifespan
Anonymous	While BCBA is a service that is provided it will not be assessable due to the rate in which Medicaid pays. Also BABA's need to be able to direct treats since behavior is the key problem in individuals with autism. OT PT Speech can direct treat. Community inclusion for those with the highest need without the BCBA support will put all individuals at risk. Group home scattered within communities without the proper support are a disaster waiting to happen as we just witnessed in Miami. The setting rule limits the ability to have proper supports in place to support individuals that have the highest behavior needs. Having coordinated medical care is important key, including dental. Sedation, is required for most ndividual with high behavioral needs and maximizing all necessary medical and dental procedures in one place
Chanda Jackson	Health and quality of life.
Delia	Autistic individuals need their internal immediate families especially those that do interact well.with these types of services
Jennifer Wade	Quality of life across the lifespan

Improve transition services, and provide better assistance for young adults and their families during transitions

Respondent	Response
Aimee Combs	Every parent of a freshman high school student should be made aware of their state's Vocational Rehab program. This should be required at the first high school IEP Meeting. Self advocacy goals should be well thought out and implemented.
Barbra Lippenga	I was able to find help for my child in school but not during the summer or now that he is turning 18. There are no job services or behavioral heath services now that he is 18
parent	Unless these kids have very proactive parents there is no life for these kids. No one cares about them and their lives could be enhanced so easily.
Jennifer Hendrick, Parent	Kids fall off the ledge after public education.....need programs for transition to independent life or group housing. Vocational training and job programs would also be helpful. Many ASD adults can do meaningful work. All of us parents will die and then the community will have to care for our kids.....we need to prepare for that.
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer	Transition and aging into adulthood. I was lucky, I was forced to assimilate and managed to (barely and at great cost to my health) but for those who can't easily, we need something to help them ease from high school to "the world" successfully, lest they remain forever in their parent's care until the parents are lost.
Tonya Cummings, parent	I've heard that once a kid turns 21, they literally fall off the support cliff. There are no good services to serve the adults and it's hard for parents to figure out what to do when they get older and can't take care of their adult child. There should be a priority on functional life skills, vocational skills, and safe/healthy community living situations for these people across the states.
Anonymous	My son is only 11 so I cant speak about the future just yet That being said, what is available when my son turns 21. Its very scary as a parent. There needs to be more better programs that help parents figure out what is available for there children. Many more programs are needed as in the next 10 years there are going to be so many special needs adults hitting the system. Lots of ideas that would not cost that much money, but who do i tell them too???
Jennifer Muyot
Joyce Darbo	For individuals living with autism, they have goals and aspirations like everyone else. These need to be accessible to them, and not something that is only handled at IEP meetings when parents voices' are most heard . School districts need to invest more time and resources into supporting transitioning young adults, from planing and preparation to jobs, college etc. A better job is needed.
Janice Rushen, parent	Unless we really start working with this population, we are going to have a lot of adults unable to work or fit into society. Adult services, community training, vocational training, employment all of these must, must be Improved greatly. Students fall through the cracks and end up sitting home after high school. I think high schools need to have better programs to meet the needs of autistic student and transitioning must improve greatly. Just asking questions about what the student wants to do or where he/she may want to go to school is not enough. There needs to be a year or two years of transitioning. I feel the schools let our children down. They graduate and don't know where to go or what to do.
Jaime Z, CVR Autism Academy	The most important services for those turning 21 and graduating would be transition services. Transitioning into the community and work programs. Also, if transitioning while in school, following through with placement after graduation with a placement that the child needs to best help them be more independent.
Linda Austin	At this point in time the health care system seems to think that once a person is 18 they suddenly do not need services. Adults face grater challenges than they did as a child. If they are able to get into college they have no accommodation available to them. They need a lot of help with housing, employment and dealing with finances.
Michelle Hoffman, WA State Dept of Health-Healthy Starts and Transitions Unit-Children with Special Health Care Needs program	Again, schools need more skills to provide education using more inclusive strategies, Currently it seems to be all or nothing--self contained classroom with other students who have other significant disabilities and require a lot of non-educational attention (like personal care) Schools are unwilling to provide integrated class time for reasons such as stimming or behavioral difficulties, but will not provide the staffing to address those things in the general ed classroom. Again, too much pressure to parents to use pharmaceutical interventions, which have long term health consequences. Transition services begin too late--usually not until kids are almost ready to graduate--and focus solely on basic , non-skilled job skills. Not enough focus on health management-how to communicate with their doctor, how to develop skills for a community wage job that is not a janitor. Parents need education early on to plan for their kids independent living and community inclusion and the benefits of not expecting kids to be SSI dependent forever, which keeps them in perpetual poverty.
Bonnie Polakoff, Educational Advocate	ADLs -- activities of daily living. Most schools aren't equipped to teach ADLs and yet, ADLs are what kids with ASD need to be taught and not just taught, but learn how to generalize in order to be able to function in the adult world. Without having generalized ADLs, adults with ASD cannot function independently or even in a group home without 1X1 support. Without a robust menu of ADLs (starting in school, in elementary school and continuing throughout high school), people with ASD can never hope to hold a job or be a part of the community in which they live.
Safika Erselcuk	Transitional services for adults with autism who are not able to care for themselves is a huge issue. At present there are not enough facilities or adequate supports for the tidal wave of Autistic children coming. All of the areas listed above need a lot of work to deal with what we as a country will have to deal with.
Anita Hawks, autism mom and advocate	Services diminish after about the high school time frame which is when we need them the most.
Anonymous	Transition: when the child turns 22 the family drops off a cliff. There are NO services or support and it all falls on the family. Housing for adults, as well as all the supports to help them live independently. It would be SO much more cost effective to just be able to access services they need. For instance, my daughter will probably be able to keep a programming job, but will never be able to handle her own money because she would give it all to the first swindler who came along.
Anonymous	Aging out of the system is a huge issue. Autistic adults need continued support after age 20. This condition does not simply go away when children grow up. Job training and placement assistance are severely lacking. Transitions from high school or college are huge and support is very much needed during these times.
Elizabeth O. Morejon, AOTA	Transitioning should encompass all types of transitioning after leaving High School into the community and to higher education and should also include vocational, employment, housing, health management, etc.
Jennifer Skjod	We have no idea what to expect for your child's future. We want him to be able to live independently and to find work he enjoys. But if he can't even be educated in our public school system appropriately, how will he ever be prepared for an advanced education? How will he be able to support a family? Pay rent? Have social connections? These are constant concerns for us.
Anonymous	transition
Dwayne Kitis, Parent of Child on Autism Spectrum	Gaps include finding information on what will a child be able to accomplish, where to go for help, will a child on the spectrum be able to function in life as an adult. Assistance with adult planning for teenagers is not apparent in rural regions.
Susan Morales	Again, autism training programs for preteens and teens for every change in school (i.e. grade school to junior high and junior high to high school, and high school to college).
Julie, Tuberous Sclerosis Alliance	Traditional supports
Jenny Keesee	preparing for the transition from an early age. Not underestimating these children at a young age which ends up making them more dependent than they need to be.
Anonymous	Need more services for teens and transitioning. More life skills.
Angela Hiller	Transition and adult services is severely lacking in many areas. Again with wait lists.

Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities

Respondent	Response
Anonymous	Best practices in postsecondary education and employment are needed, especially as innovative programs are popping up all over the country. Some are college programs for students with autism, others are all-autism units within existing companies. While these efforts make for great press releases, I am disturbed by the fact that so many of these programs operate on stereotypes (e.g. all people with autism are excellent programmers) or insulate their clientele from the larger community that they are ostensibly a part of (e.g. the autism college program that requires multiple therapy sessions a week). Many of these programs, particularly in postsecondary education, are very expensive and often hard for families to afford. In order to promote the most evidence-based, inclusive and affordable practices; much more research is needed in postsecondary education and employment practices.
Annette Blanas	So much is needed here. Adults with severe autism have very few employment or recreational options and these need to be expanded. Also all adults with autism should be able to access life long learning opportunities that include vocational programs, college, and day training programs for those who really need something that carries forward what was available during high school.
Paula Roegge	Remember that even though some children with Asperger's have very high IQ's, they still need help with practical, everyday tasks. Vocational rehabilitation may be a very real need and they should not be disqualified simply because they have a high IQ. Being smart doesn't always include practical knowledge such as reading maps, bus schedules, knowing how to make their own schedules, applying and interviewing for jobs, etc. More employers need to understand how to work with people with autism. Many don't seem to even want to try and some will find ways to fire people and get around their disability - even though it's illegal.
Christy Chapman	This entire area is a huge problem. In Texas, 40,000 kids with Autism will graduate high school in the next 10 years. What will happen to them? Stats tell us that 90% of them will be unemployed and living with their parents. What happens when the parents die? The state has to take care of them. We are being reactive, not proactive, and with an ever-aging population of individuals with Autism, this is not only a huge problem but a crisis. They need education, job training, and career support.
Cassandra Stalzer, Parent	Education and employment are the most important to me. I see many employers outside Alaska beginning to think about recruiting and developing kids on the spectrum for the gifts they bring. I don't see any thinking or leadership here yet. In Boulder I attended a maker fair where school districts were recruiting kids on the spectrum to their IT, science and robotics programs. There were lots of independent Lego leagues, robotics leagues and nerdy gamer groups recruiting these kids. There were small businesses run by autistic adults that drew upon their interests (3D printed jewelry created based on mathematical formulas). I just don't see those opportunities or enthusiasm here. If they are here, they are not being shared broadly.
Anonymous	Access to appropriate vocation/education is a huge issue. The skill sets of individuals with ASD are exceptional, however, far too often, individuals with ASD are in programs that do not challenge or expand their unique skills sets. It is crucial that public/private partnerships are developed so these skills and translate into meaning full employment. It is also important at the university level that students with ASD are fully supported socially so they can fully participate.
R. Paleau	Job/trade training should be number 1 priority so these children can be independent. And a monetary investment in developing housing options for this population. All parents worry about what happens to their child when they are gone. Prospects for employment are abysmally low for this group. We need to invest in their futures and create more trade and vocational opportunities. Yes, strengthen collaboration with higher education and industry to prepare these kids to be independent.
Kelly Ison	I am very concerned about services available to adults with ASD. My child has Asperger's Syndrome and he is having a very difficult time with college. He attended a special school for high school. We are still trying to get help from the vocational people to help him on the job or to get back into college and that has been a nightmare. A lot needs to be done for our children graduating from high school. There are not enough programs out there to help these young adults. They are often smart enough to persue higher degrees but the colleges are not helping them do that. Their awkwardness makes it difficult to get a job even when they are fully capable. We have to do better for the huge numbers of kids graduating high school with ASD.
Anonymous	Little to no services once asd child turns to adult. No job training programs or opportunities. Finally the ABLE acct came out to help wth life planning.
Karen Sanchez	Development of inclusion in the workforce for people with asd needs to be more widespread.
Anonymous	Vocational training
Loretta Longo	As a former HR professional I believe that the barriers to employment for those on the spectrum can be easily removed. Vocational training should include "how to interview" training. Additionally, all employers (or at least those who will be interviewing potential candidates) should receive mandatory training on how to interview to not discount those with ASD. I know that if someone was struggling with eye-contact, didn't mimic my body language, didn't speak emphatically, didn't have a gregarious personality, etc. that I wouldn't have considered them for hire. Now that I'm familiar with traits, symptoms and behaviors of those on the spectrum, I don't take those things into consideration (as heavily). Training to reduce the stigma in employment services is a MUST.
Anonymous	employment/vocational training & vocational support
Annette Bradshaw, Parent/Speech-Language Pathologist	Connecting with potential employers. Successful workplace intervention strategies
Anonymous	Vocational training, employment opportunities, independent living skills.
Anonymous	Employment
Rosalind Gauchat	Let the money and support follow the person. Maybe someone may not be able to do a full job task, but find the parts that someone can do. Allow for supports for the deficits, but encourage growth in the strengths. That is, SSI cannot be punitive nor discourage active engagement.
Roseann Schaaf	Transition to employment - use of occupational therapy unique expertise to address this.
AM	Reasonable and appropriate post-secondary placement options.
Amy Schmid, Dartmouth Hitchcock Medical Center	I would like to better understand what jobs people with autism are capable of. Sometimes popular media puts forth the idea that people with autism can be great computer programmers; unfortunately, that only applies to a minority of affected individuals.
Anonymous	Educational facilities lack in the inclusion of children with ASN and there is not adequate support put in place.
Stacy	My son is only 11. I know he wants to go to college as he is very intelligent. I'm hoping when that time comes he had access to the colleges I see on tv that help kids with special needs. Also, people on the spectrum shouldn't have to fight so hard with public schools to get their children what they need. I'm hoping when it's time for my son to apply for a job, people will have more of an understanding that he may be uncomfortable with the interview process but very capable of doing the job he applied for
Ellen J Brummel	vocational training makes sense to focus on because the more the ABA type systems take effect, the ASD population will be more capable of integrating in society
Molly Whalen	There is great need around vocational and post secondary education and career training. Especially in the tech fields and elsewhere.
Debra Balke, Child Neurology of SLO/Central Coast Autism Spectrum Center	Employment is the biggest issue facing adults with autism. Vocational training is starting to become available but the jobs are just not there and employers need more incentive to hire adults with autism. These individuals cannot get past the job interview and need assistance with actual job placement, not just increased access to places to apply to. It would be far cheaper to employ these adults than support them on disability.
Delores Goneau	Vocational training is practically non existent in Virginia schools for special need students.
Elissa, Parent	How can and should colleges adapt for asd students? What is required? What are best practices?
Anonymous	Trade opportunities need to included. Right now, in my community, a bakery named "Puzzles" opened and hires only autistic individuals. I wish there were more similar opportunities available.
K G	workforce readiness is something I think needs focusing to employers can understand the children of our future may need work environments adjusted for them to be their best.
Jenna Moser	Educational services
Jenny Nash	employment training on how to best utilize individuals with Autism.
Jilene Chivell Griffiths	Help with employment. Getting a job, interviewing and job coaches for those already in the work place. Most people with ASD work entry level jobs and do not know how to move up in the job place.
Anonymous	Employment is such a huge issue for adults with asd. Despite being college educated, getting through the interview process is nearly impossible.
Mary, Mom , teacher & advocate of children with autism	Career assistance for all students
Melissa Friesl, parent	I am very concerned about education, especially after high school. I am concerned about employment as well.
Anonymous	Funding for Education, Vocational training and employment programs.
Mary Komperda, Parent	My son is just entering high school and this is my next big step. Vocational training seem so important.
Oliver Jackson Edwards	Vocational training... and supporting private companies who provide meaningful laor, with supporting supervisors. The issue: by 2030 government largesse will be limited severely as the population ages and we ship our productive jobs overseas and the tax base shrinks. We MUST move all autistic adults toward self-provision as soon as feasible, to the limits of their particular disability.
Robin Weisman	So hard to pick one EMPLOYMENT. People with Autism are the most unemployed or underemployed of any group. Not enough to see scattered places where people are creating employment opportunities for people with ASD - needs to be provided across the country. Not enough to think that people with ASD are computer/math people. Many are not. Not enough to give somebody a job. Programs need to be ongoing. people without ASD aspire and grow in there positions. People with ASD lock into a job and stay. Need to be taught advanced soft skills once basic soft skills are taught and attained. Need more positions created for those capable of working but not competitively...sort widgets can not be the expectation. Need to adjust social security and ticket to work program to provide a longer time of adjustment for the person with ASD before benefits are reduced or taken away. 90 Days is not enough time. Finally, our veterans need to have there own category for employment. disabled vets and other people with disabilities should not be lumped together, since disabled vets get prioritized. The vets need jobs, no argument. But to have people with disabilities, in particular Autism, compete with them is unfair to all.
Anonymous	Companies need more incentive (policy) to hire individuals on the spectrum. We need better opportunities for low-functioning adults.
Simon Huebner	Job coaching is key here. An entire population is most likely struggling with employment issues at every stage, especially in a time when people commonly hop from one job to another. Once the ASD population can get a chance to prove themselves and provide for themselves, then the other factors such as work stress, other job skills, financial planning, and being a part of the community will follow.
Kristen Brown, Parent of two ASD sons	Higher education needs to be inclusive. Few Universities can correctly support their brightes students executive function issues common with ASD. Some universities have started programs that support ASD students, no need to create the wheel, but there should be something designed to reach out to campuses and help them design a system of support.
MaryAnn Pranke, Parent of Child with Autism	Workforce development is the greatest issues. Just now starting to see some training programs tied to employment for young adults with autism. Need more of these that are designed for their unique abilities. More funding needed in job training where there is a clear return on investment when they are employed. Studies on the programs that work, job placement, retention and what is needed for successful retention are all needed. College and university attendance for people with autism. what services are available to assist? How can they be successful? How can they function in that environment even with an aide/guide?
Anonymous	Vocational Rehabilitation counselors in my area do not understand Asperger's, especially executive functioning. Neurotypical people, including those trained to work with people with disabilities, don't understand that someone who's intelligent is using every bit of their resources just to keep themselves together.
Shayna Franks	Slot more companies are opening up to hiring ASD individuals, not just having them stuff envelopes. I hope by the time my kids grow up, there will be even more opportunities.
Anonymous	Educational training at college level is lacking as well as transition into adulthood. Require companies to hire a certain percent of adults with disabilities.
Anonymous	employement is a concern as the public eye has labelled people with asd as something that they may not be
Anonymous	Employment - specifically competitive integrated employment as defined by WIOA. Far too many individuals, parents, and even some government agencies think that individuals with significant disabilities cannot work - this is simply not true. Employment should be THE main focus. Skills that need to be acquired to be employed have benefits in every area of life (social skills, motor skills, hygiene, etc.). Without employment being the focus, skills may not be acquired or may be adapted using techniques that cannot be generalized across a variety of environments.
Christine DeHaven	Too many times there are bias to what people with autism can do I.e. Shred paper, janitorial supermarkets, we need everyone to hold them to high expectations
Anonymous	employment
Amy belzile	Vocational training
Kayla Weant, Prosper Independent School District	More services and training need to be provided to employers so that they are prepared to employ staff with ASD. Many times the person with ASD would like to work and is qualified to hold a job, but there is not a support system in place for them. Give more information and training to employers so they feel empowered to hire employees with ASD.
Linda Yin Lee, Self employed pediatric occupational therapist	Again access for parent and family support is limited with busy families trying to search for their own answers. I hear this a lot from families. Some organizations with interest in autism have their own agenda and do not always state their particular intent or bias. And educational systems are not particularly concerned about preparing children for later life. Unfortunately this happens in regular education as well as with other special education children, because working with families is often difficult, timely and outside of the needs to keep up with the given curriculum. There should also be some guidelines for when and how to prepare for vocational training.
Dr. Marcia Singer, Retired Principal; Co-Chair, of Autism Special Interest Forum with the Association of Childhood Education International	. The four responders have Masters Degrees and a Doctorate in Leadership. Curriculum, Developmental Psychology and directly work in ASD including classrooms leading schools and professional presentations locally and worldwide. We are involved with students (aged 2 - 21), develop programs, integrate ASD students into mainstream activities, enter employment and higher education. In looking forward to preparing students for adult life, we believe you have to look backward. Preparation needs to start in early childhood. Areas of focus must stress teaching of executive function, problem solving, changes in routine and less dependency on adults within formal academic and social settings. Students who do not naturally develop these skills cannot adapt and shift their behavioral response to new situations and social events. This accounts for declining success in transition to college and careers. Schools predominantly offer informational and rote learning. However school activities need to generate problem solving, changes in routines, less dependency on adults, to succeed in adult work places and to live more independently. Preparing families for their child's growth to adulthood should also start in childhood. Allow children to self navigate within their home and to organize materials for their next activity. Consider increasing the number of people with whom they interact. Parent workshops should include discussion of post-schooling opportunities. .
Annie Acosta, The Arc	Disability Education. People with ASD experience considerable challenges, a number of which are owed to stigma and its resulting social isolation. Education programs (from elementary to graduate) as well as relevant professional accreditation programs (health, education, law enforcement) should include at least basic education on disability. The research agenda should include at least two studies of effective disability education programs that include ASD, one of which should be done with law enforcement. Model Employers. A number of large corporations have recently developed specific recruitment and retention programs for people with ASD (for example, Microsoft, SAP, and Walgreens). They have sought out people with ASD due to associated strengths, such as excellent visual perception and the ability to remain highly focused in certain situations. Studies should examine targeted strategies and effectiveness in recruitment, retention, and employee satisfaction. Future planning. Future planning is important throughout life, especially for the time when parents are no longer able to provide support. Research is needed on all aspects of future planning for persons with ASD, including daily routines, supports, community housing options, finances (benefits, assets, incomes, trusts, ABLE accounts), waiting list for Medicaid services, portability, health (including medications and food allergies), decision-making support, employment, interests, and relationships.
Brenda Messex, Parent & Personal Service Worker	More programs for adult special needs to work as volunteers need to be put in place
Aimee Vitug-Hom	There is a wide gap between the services provided in the educational system for vocational training and actual employment.
Anonymous	vocational training
Karen Heffler, MD, Drexel University	Employment is one of the biggest barrier for adults with ASD. Many people with ASD are not given a chance to show their capabilities. Research into innovative programs to involve employers and community stakeholders to provide opportunities for those with ASD is needed.
Trish, special ed nurse and parent	this is a critical piece, and once again, I feel my 21 year-old son is the canary in the coal mine. He needs effective job training and social programs, as the adult programs available are woefully inadequate. My son, who earned a high school diploma, was stuck in programs (sheltered workshops) counting screws and performing other tedious and lonely tasks. The consistent downfall for him is in the interview, due to communication and social aspects. As with many other aut's, one sees so much potential, if only the defecits could be improved with more social skills training.
Anonymous	Vocational training and employment
Joseph Schunk, Parent	Supportive transitions to competitive employment.

Multiple Themes Addressed

Respondent	Response
Anonymous	We need communities for adults and families. Where they can live harmoniously if they desire. Long term care of adults with severe needs and best practices. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD
stella avcisoy, ARC of Seneca Cayuga	I know that all of these are extremely important. Right now housing and vocational training are at the top of the list. I know that a huge, painful gap is the existence of residential homes and jobs after the age of 21. Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
A Kimbrell	1) Increased federal funding for transitional programming outside of LEA (Local Education Agencies). 2) Increased federal funding for families looking at financial planning and aging services. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy
Paula varner	The public school system is very lacking with too many kids not enough teachers and aides. My loved one was withdrawn from school at the age of 17 due to a safety issue. Things need to improve there. We tried an adult day care program when she got her waiver activated after waiting 13 years on the waiting list for a waiver. That Was not a good place. There are no quality programs/places where we live that I would consider safe. Something needs to be done about this and there needs to be more programs and places where a severely disabled female adult can go during the day and be taken care of/supervised by people that actually know how to care for someone with severe autism. what will happen to my loved one when I no longer am here to care for her??? Where is she going to go?? There needs to be places where severely autistic females can be placed and the family should not have to worry about what will happen to her. We are approaching 60 our daughter is approaching 30. She can not feed bathe or dress herself. She is not toilet trained. Who is going to take care of her when we are dead, where can she go to where she will be safe and with people that truly understand and know about taking care of someone with severe autism? Places for someone like my daughter need to be built or opened and staffed with knowledgeable quality educated people to work with someone like my daughter. There isn't anything where we live!! Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	transition, and adult services Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions;
Amanda	The future is unclear. As our communities grow and the number of those with autism continues to grow we need to continue to increase funding for services available to adults on the spectrum, especially those on the more severe end of the spectrum. I am also concerned with the higher suicide rates for young adults on the spectrum. We need behavioral health care that specializes in those on the spectrum readily available. There is a HUGE need for a thorough explanation of transition services for young children when they are diagnosed. I am a secondary special educator and it is a tough conversation to have with parents of middle school students on the spectrum when they've never been informed or transition services available (For example, Agency for Persons with Disabilities, Vocational Rehabilitation, Medicaid Waivers etc.). Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Annmarie Andress	this is the bleak outlook for adult programming esp for those with severe needs. We need to provide higher pay rates so that providers can expand -- we need to end the 14K wait list, we need trained staff with expertise in autism behavior challenges. The system needs to change and allow guardians and disable choices and funding for those choices. Adult programming and services is crisis levels now and only going to get worse. My son is severe autism and ID and challenging behaviors. We need to allow choice for adults to live on campus and farm models. Staffing rates need to be increased for providers to recruit and retain staff for adult services. Where is IACC stance on choice for individuals to choose campus based setting -- individual rights of choice for farm model, agritown, campus based are not available and providers cannot staff group homes with low rates. Adult campus based models adult services -- there are no services available. no providers due to low rates, and not enough or any options to consider besides group home. Need options and choice and providers who can provide choice and not be handcuffed by federal laws that do not provide choice to live in campus based setting -- why do elderly get to choose nursing homes or assisted living campuses but the disable with autism cannot not? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Services and research should take into account the perspective and choices of adults and their families/caregivers
Alexandra Tien, MD	My son is now 17. He failed his first driver's road test and is discouraged about that. He takes regular classes at his high school and does OK. But as he gets older, the social chasm with his peers gets wider. People perceive him as odd. My big worry for the last few years has been whether my son will be able to get a job and keep a job, especially since the statistics are frightening. Regardless of whether he goes to college, I worry that at some point he will finish school and fall off a figurative cliff. There is nothing more heartbreaking as a parent than to see your child repeatedly disappointed and falling short. The financial and emotional supports for families dealing with these issues are just not there. Ultimately, if families cannot bear the burden, society will. There should be respite care and I think there should be public support for the extra help such individuals may need should they go on to an institution of higher learning. Suicidality--my son has talked of suicide and hating himself at times and those with autism have a higher suicide rate than average. Self-driving cars so that those who struggle with driving can get to work and other places Health issues are also an important issue. Sensory problems play a role--eg my son hates the taste of toothpaste and sensation of brushing so dental issues arise frequently. Also my son would happily eat candy all day if I let him, so nutrition and making smart health choices are also issues. Finally there needs to be greater public-private collaboration in the world of employment, perhaps along the lines of specialisterne, SAP, nonpareil institute, etc. This is my biggest concern for my son in the near future and something our society has not addressed very well. Feel free to contact me by email if you would like further input. I have both personal and professional insight into the struggles faced by those with autism. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Stephanie, Mother of 27 yr old autistic son	Employment and training is paramount and non existent. Job placement services through OVR was another joke. 4 years in their system, two different providers, 4 different caseworkers and they could not come up with a fit for my son. Housing? My son will be with me until I die! Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services are lacking in GA. The vocational training is for menial jobs as well as employment. Housing is non-existent. There is one group community that does not accept waivers and another who does, but the transportation is unreliable. Providers want the people they "serve" to move where they are, change jobs, change churches, and do everything together if 24 hour services are provided. You can't get 24 hour coverage with the CLS services if you are in your own place. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Brittany, Adult with Autism	Also more research on older adults (adults 40+ years in age) so we can see if there is more risk for certain diseases and/or disabilities outside of Autism. I wish there were more services for adults with autism. When I say adults with autism, I do not only mean young adults with autism whom are between the ages of 18 and 25 to 27 years of ages. I wish there were more transition programs made available to adults 26+ years of ages that can help us learn independent living skills, advocacy skills and if we want to go to college to get a degree, tutoring when we need it and social skills training. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Jan Ornelas, Brian's Hale, LLC	Not only is there no housing available there is no funding available for programs trying to create housing and training for adults with autism. My son has no where to go when I die if I can't get Brians Hale implemented. (Brians Hale is a farm that not only trains autistic individuals in organic farming and Farmer's Marketing it also provides housing with 24 hour care/support. Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy
Anonymous	I am the parent of a young adult and teenager with ASD. I am gravely concerned about what will happen after I am gone or no longer able to provide support to my sons. Vocational rehabilitation has limited options and does not understand the need for programs and opportunities to apply vocational skills in a supportive environment. While funding is beeing directed to the Department of Workforce Development, if there isn't education and development of programs and services that are effective in building on strengths of the individuals with ASD, then this will have little impact on the crisis. The number of adults with ASD who are living with parents or other family members and unemployed or underemployed should be researched. I know many parents who have exhausted options and have given up on a dream for independence and employment. The discouragement that comes from repeated failures due to an inadequate system of supports and lack of understanding in the community causes many highly talented young adults to quit trying. This is unfortunate and unconscionable. The future is grim if transition and adult services are not developed to support individuals in becoming productive adults who are a valuable part of our community. There has been a tremendous effort to provide early intervention services. There needs to be greater access for adult services since most of a person's life is spent in adulthood. Supports for families is critical not only when children are young, but also into adulthood. Since some level of support is required throughout a lifetime for many individuals with autism, there needs to be a wider range of services to reduce the stress and financial burden on families. Simply providing funding without appropriate services being available in the community is not helpful. Rural areas in particular need greater access to services and supports. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Brad Wyner, Rose-Mary Center	There seems to be a big gap in research and services for adults (people over age 21). Also, the existing developmental disabilities system (in Ohio, that means county boards and providers) need to catch up on all of the wonderful research & advances that have been made in the past few years; there seems to be a knowledge gap between what is happening in schools, and what the adult service system knows how to provide once people graduate. We need to figure out how we will fund Employment First. Personally, I would like to see customized employment be available to more people, to spend more money up front so that someone can become financially independent in the long-term. More research about adults Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Dena Gassner, Arc US/ ASA	1. Housing 2. Transition/Rehabilitation services/trial employment and employment opportunities. 3. Community integration 4. Employment for highly qualified autistics who never had services and would like to work addressing abuse and domestic assault. Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	There is a huge gap in provision of or assistance with housing for young adults on the autism spectrum. Many families cannot afford to financially support their young adult children with autism who wish to live on their own and who are capable of doing so with minimal supervisory support. Health and quality of life across the lifespan is also of major concern to me. Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Carolyn Hyman	I would like to see more flexibility in the ability for parents to create their own group homes. I think that health providers are not trained on how to deal with autism, and in particular adults with autism who may no longer have a parent to advocate for their health. I think there is not enough education on sexuality and autism. The truth is that you need to be providing intervention five years before you expect the behavior you want to be performed. Very few parents are speaking to their eight year old children with autism about sex. For HFA, sex is where most of the children have their first intersection with the law. It's heartbreaking and completely preventable. Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan
Cathy, Parent/Conservator	All states need to have enough educational and day care providers, available residences , recreational activities in the community in place for adults on the spectrum after they leave the school setting at age 21 or 22 depending on state law in each state. Workforce development, either paid employment and /or volunteer opportunities available for the adults that are currently in the system and those that are coming up. There will be more and more adults with autism in the future. It doesn't go away once they hit the magic age of when they exit school programs. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	1) Quality of life throughout the aging process 2) Financial planning. MAKE IT EASIER. The laws make it so difficult for our special kids and adults. MAKE IT FAIR. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Cindy, parent	ALL OF THE ABOVE NEED TO FOLLOWED THROUGH WITH. AGAIN...LESS TALK AND MORE ACTION! EDUCATIONAL AND WORK OPPORTUNITIES. WORKFORCE DEVELOPMENT AND STRENGTHENING COLLABORATIONS WITH COMPANIES THAT CAN PROVIDE EDUCATION/JOB AT FAIR WAGES. Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Clarissa Kripke, MD, University of California, San Francisco	Housing loss as a health risk factor and cost. Preventing financial abuse of adults and mechanisms to leave property to adults. Higher education for non-speaking adults and those with ID. Health status of adults with ASD and social determinants of health. Workforce training in Supported Decision making and self-direction. Workforce training in trauma-informed practice. Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Catherine Pinto, Parent of adult son with Autism & NonProfit Board Member AACORN Farm	ADULTS WITH AUTISM SHOULD HAVE THE FINAL SAY IN WHERE THEY LIVE, WHO THEY LIVE WITH AND WHERE THEY CHOOSE TO SPEND THEIR TIME. The Centers for Medicaid/Medicare have put strict funding restrictions on programs that currently serve adults with disabilities essentially putting them out of business based on the erroneous notion that advocates know better than individuals what they want and need. LET ADULTS WITH AUTISM/DISABILITIES HAVE THE FINAL SAY AND HAVE THAT CHOICE FULLY FUNDED. Research on Quality of Life is very important to adults with autism. Services based on models that serve a large population of adults with varying disabilities may not reflect what adults with autism value in their lives. PEOPLE WITH AUTISM SHOULD BE ALLOWED TO CHOOSE WHERE THEY LIVE AND WHAT THEY DO. Person Centered Planning is not being properly applied when it discriminates against adults who choose to live in settings with other adults with autism or in settings (like farms) that Centers for Medicaid/Medicare have determined will not be funded. This is America- we need to respect the right of the individual to choose where they live, who they live with and where they want to spend their time. Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Services and research should take into account the perspective and choices of adults and their families/caregivers
Anonymous	Services for transition to adulthood and for adults is the biggest gap in research, services, and policy. Having an 18 year old with autism, we have heard from many other parents about the "cliff" - once the child graduates from high school, no services exist. More is needed to prepare youth to live independently, obtain and hold employment, self-advocate, succeed in higher education, engage in relationships, and live their lives in a fulfilling way. We decided to hold our child in high school an extra year to allow her extra time to work on transition skills. The success stories about firms hiring people on the spectrum are few and far between. Most do not have the 'soft skills' to succeed in an interview to become hired. Most companies are not willing to accept and accommodate those with special needs. More needs to be done to nurture acceptance of people with disabilities as a natural part of the population. The system is not equipped to deal with the increase in youth with ASD approaching adulthood. Policy and public perception are not geared towards dealing with adults with autism, only children. Most important are improving infrastructure and workforce development. There are huge numbers of youth with ASD approaching adulthood and neither they nor the workforce are prepared for employment of them. Youth with ASD need support to experience employment at a younger age, in high school as do typical teens. Much is needed to teach the social and soft skills to prepare them to enter the workforce and successfully hold jobs. The more employment is available to people with disabilities, possibly less governmental support (financial) would be needed. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cinda Walchli	Adult services for individuals requiring a high level of care (Residential) is grossly underfunded. Add to that aging and the increase in physical issues as well as geriatric needs and the funding is laughable. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Destiny	Health and quality of life across the life span, community integration Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
David Feickert	Employpnent and having jobs be willing to hire more people with disabilities and also having better training of direct support staff and angencys. Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jennifer Diers	services as children grow and can not be contained by parents. High quality long term care options. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
Anonymous	The most important of these would be considered life supports for healthy living. When we speak of training, employment,housing and financial planning, these are the practical parts that make up the quality of life for most people. Consistency in developing and managing these skills has not been a part that has been managed well. A new priority must be set as it relates to these areas. A new emphasis must be placed on individualized planning for young adults which will provide for the bridge to true adulthood which is a reachable goal. My wish is that as a community we can forge a new consensus for all people who live their lives on the Autism Spectrum, one that truly meets their needs. There are real supports needed to make this a reality but we need a real commitment to providing these supports. The policy gaps are centered around the real needs of young adults who do not have the supports available to them as they approach the areas of critical life skills. This is the time when individualized support could be most helpful and bring the most impact in a young adult life. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Services and research should take into account the perspective and choices of adults and their families/caregivers
Robert Vincelette	adult services: tough enforcement of civil rights. Protecting autistic people from abuse and exploitation in the work place Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jacquelyn Eder Sample	1. Transition in general. 2. Matching skills and interests to purposeful, post-secondary activities and employment. 1. Transition past high school for persons with ASD. Matching their skills and interests with purposeful activities and endeavors. 1. Transition to post high school activities. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kirsten Sneid, Founding member of Autism Society of the Heartland, Bi-State Autism Initiative, Advisory Board of K-CART and former Advisory Board member of The Thompson Center at MU	There is a 7 year waiting list for housing. No data driven Vocational training program in any state that targets ASD population. There is a need to revisit "community campus" concept for work, living and leisure. Looking at the assisted living campuses thriving for older adults, the ASD community could benefit and be capacity building in use of limited staff, shared activities, transportation, health care, job training, exercise ect. Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Ana Dueñas, Michigan State University	Vocational training, Quality of life across the life span Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Dwight Zahringer	Transition, aging, housing, anadult service, education, employment Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Emily Norton, parent	We need help, we do not have programs or support in place for this aging population and need help with transition and adult services. There is a tsunami of need coming and we can't have these young men and women sitting on their parents couch until the parents die. Its a waste. Support for adolescents and aging young adults with autism, and job training. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Erika Liljedahl	The largest gap now are services for teenagers to early adulthood, including summer camp options for 16-18 year olds and job training opportunities. There do not exist enough organizations to help find a place for this age group to contribute to the communities through work or other paid opportunities. The financial disparity of this population compared to their neurotypical peers is alarming. Workforce development by far is the most important. With the increasing number of individuals with ASD society is responsible for doing something. Many of the individuals diagnosed can contribute to society but we have to find a way to teach/train that fits their learning style and tasks that are appropriate for their cognitive and intellectual development. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Ellen Maurer	Many disabled people do not understand money and easily fall prey to those who would scam them. Communities do not accept them because they are weird and they can be easy prey even in the group homes. The research has shown this to be fact for many years. Services decline and eventually fall off for many if not all unless they go into a nursing home or other facility. Puberty can have major effects on these children. This is a time when their hormones and bodies are like all other teenagers and they do not understand. Medications are not the answer always. More tools to help them deal with the emotions and feelings at this time would be helpful. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Eric Common, University of Kansas	adult services, including education, vocational training, employment, housing, financial planning and community integration. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	There needs to be more support for college students with autism, including help with organizational skills, social integration and study skills. The government should provide scholarships to pay for these services, as most programs that currently exist are ridiculously expensive (on top of regular college fees). 2. Providing supportive, subsidized housing to help people with autism become as independent as possible; 3. Developing a government program that will support adults with autism in locating jobs and and provide incentives to employers willing to hire people with autism. In addition, there needs to be more support for college students with autism, including help with organizational skills, social integration and study skills. The government should provide scholarships to pay for these services, as most programs that currently exist are ridiculously expensive (on top of regular college fees). Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Those that have not received the support and therapies at a young age will not have the quality of life that those who have received those therapies. Without community integration and inclusion, we cannot expect them to exit the school system (the only thing they have known) and "miraculously" be able to be productive. Support must begin at an early age to prepare them for higher education, independence and employment Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	See previous. I could write tomes about how isolating it is, how frightening and expensive it is for young people with autism and their families. There's NO support if you're not on a waiver program, and the waiver programs are weighted down with ludicrous amounts of paperwork requirements, annual recertifications, etc. 1. We need more services for teens and young adults. I struggle to find OT and speech therapy for my young adult daughter with autism, and there is virtually no career and life skills training available. 2. We need more funding for DD waivers -- my daughter is 19, we're nearing 60 and we have another decade waiting for funding. We've been self-funding her education and therapy for 20 years, and because she was not appropriately diagnosed until she was 17, we still have another decade waiting for support. 3. STOP denying SSI claims for young adults with autism! We've had to hire a lawyer to file an appeal, and this is a waste of everyone's time and money. 4. We need more supports for families with young adults with autism. When my daughter was in school I could work at least a bit. Now she has only a few hours a day of transition school (ages 18-22) and I can't find an employer who'll hire me for so few hours. 5. We need a LOT of first responder training to ensure the safety of young people with autism. 6. We need community-based social and career opportunities for young people with autism. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Need assistance for adults with autism and their families in navigating available adult services
Anonymous	My child is young, so my perspective is that I have concern that he is not getting the building blocks of what he needs to be a successful adult. Think long term with these kids, not "what it takes to get them from year to year". Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy
Karen Link, Parent	Transitioning out of school into the adult world has been the hardest part. I see no future for my son. He is stuck in a day hab where he does nothing. I will have to care for him until I am unable to. There is nothing for him to do. He has become physical with me and others. Where do we turn? I pay to have people take him out. There are no services for him.I want to move but can't because I will have to take him with me. He is 25 years old and at the mercy of a system that doesn't work. He is at the mercy of people who don't make enough to stay. We need programs that work not warehouse Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Helen Cunningham	Need more research for young adults to help them productively fit into the workforce and have a good quality of life as they move forward with their hopes and dreams. This is a critical need given the autism spectrum disorder Where is research for the young adults to support them as the enter the next stage in there life. More research for young adults to determine what the biological problems are as the kids age into young adulthood. There is nothing to help support them in this area for them to lead productive lives. Please please provide funding for young adults on the spectrum to identify neurological impediments that can be addressed just like the younger kids with ABA. The young adults will need services to help them become productive members of society. Everything is provided for the babies through high school. Then it all stops. That is a waste of money and resources. Isn't it the point to get the into the workforce and have the best quality of life possible ? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Leslie Pirelli	Transition is important, my son is in sheltered work employment and he is very happy and successful. He would not have his quality of life and happiness if in a regular work place being taken advantage of by others and he would not have gained friends. Housing is a concern, where will my son live? He would like to be as independent as possible. As a parent I do not want my child in a housing situation with drug dealers and felons in the same building. When I die what will happen? Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	Healthcare is a priority. All of the topics mentioned are important. Life skills and coaching should be available. Gaps in services for adults with ASD. Most are unemployed or under employed. Most important are the lives of adults on the spectrum. Need the ability to cover adults on insurance policies past the 26th birthday. If they are unemployed, the only option is Medicaid. Services are limited for adults with ASD. Need Talent/Job Placement services. Also need employment coaching. Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition from high school to college and independent living is impossible to understand, navigate and move forward in. Most agencies offer some sort of support, but do not work together. They also cherry-pick the top employable students, leaving the rest behind and then proudly talk about how integrated they are. Most jobs are in hospitality or health care industries and rarely offer opportunities for advancement and do not offer a wage that would support living independently. Customized job carving and trained job coaches are desperately needed. Job coaches make or break success on the job. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Joan McCarty	Autistic adults who have been segregated and isolated through the schools and who have been assumed to be cognitively impaired (they are not) remain isolated and segregated as adults. There are no housing options. There is no vocational training. Again, I'm doing all of this myself for my 21-year-old son. There is no community integration because it starts in the schools with segregation and isolation as well as incredibly low expectations. It's really dismal out here. Support for individuals. Support for individuals. Who can go with my son to his GED prep classes. Who can help him as he navigates a workplace. Who will hire my son? Who will help me find his (hidden) talents. Some places are working on hiring "high functioning" autistics. That's great. But those with Kanner's classic autism have talents too and those are the people who are simply thrown away. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD;
Anonymous	Housing, and what happens to my autistic family member when I'm no longer here to support them. Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy
Jennifer St. Cyr, WithinReach	All of the above. gaps in service and policy: quality of life/community inclusion of autistic teens and adults. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
J McLead, SPED Teacher	Careing for themselves as adults. Adult transition to work needs, Long term care Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Julie Johnson Coulter, CoulterWorks	We really need to have a different approach related to employment. In this new economy where many workers are self employed contractors, we need to prepare young adults to use their talents and strengths in different ways and to seek out ways they can work even if they can't get hired by a company as a regular employee. We really need to start much earlier with teaching life skills and financial planning. Our school curriculum needs revision to be more focused on future life prep. Focus on workforce development - similar to Teach for America - creating a workforce of adults with autism who are able to use their skills and strengths for productive work. Example - could there be a program after high school for national service for adults with autism? Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
JulieKay Dudley, Autism Society of Oregon	Better options for adults who choose not to or can not work. Need good long term living options specific to Autism, not lumped in with other DD clients, or with mental health patients. Better respite care options for adults living at home. Better training for online staff, which would come with better pay. If we pay them a decent salary, there would be less turn over and better trained providers. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD
Julie Long, parent of child on spectrum	Most important are: transition, adult services, including education, vocational training, employment, housing, financial planning and community integration. Many ASD individuals CAN contribute but need coaching to succeed in a typical workplace. Secondary priorities should be: health and quality of life across the lifespan, aging (as these issues apply to any person) Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Kimberly Richards, Parent caregiver	Transition, long term care and planning, housing, health and quality of life. Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Kathy Wilcox, ACCES-VR	As an individual who is both a service provider and someone who was diagnosed late in life with ASD, I have personally felt the impact as well as seen the struggles in others due to a lack of services and supports for adults on the spectrum - particularly those who would previously have been diagnosed as Asperger's. We struggle to navigate a social world that is always somewhat confusing, and suffer faux pax on the job, in friendships, in relationships, and challenges in trying to parent our children. There are virtually no supports for us unless we are fortunate enough to have natural supports in the community or through family, and these people are not trained professionals who can give objective guidance. We need better accommodations on the job for our sensory and social issues, opportunities to improve our social skills and connect with others, and supports to deal with the minefields in navigating our marriages and being good parents. Some companies are beginning to recruit employees with ASD and provide accommodations willingly as they have recognized our unique strengths and how we can be an asset in the right workplace. More research needs to take place and more advocacy to promote the participation of ASD individuals in the workforce in professional, skilled, and high-paying positions. I have seen too many gifted young adults with graduate degrees working in minimum-wage jobs due to lack of finding an appropriate vocational fit. This is a terrible waste of gifts and talent. We need greater collaboration between agencies that work with individuals on the spectrum to share information and strategies for change. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Katrina Ostmeyer-Kountzman, Integrated Behavioral Technologies, Inc.	1. Aging and intervention for an aging population. 2. Continued focus on treatment and remediation of symptoms past early childhood. 3. Effective education using an evidence-based model. 4. Effective vocational training using an evidence-based model. 5. Funding structures to support evidence-based treatment and education and training of teachers/providers. Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kristy Barnett	This is a big disparity. Autism is life-long. Yet, when ASD students are finished with high school there is not a transition plan in place to assist them with their future. Questions must be asked pertaining to what happens to the person with ASD when the caregiver dies, what kind of job can they hold down, if they cannot work then what happens to them, where are the transition services, what can Vocational Rehabilitation provide, where do they live, can they have families, if they do-how do they support themselves? How does the person with ASD integrate into the community and become accepted? The is a crucial question that deserves better services than what have been available. Workforce development and strengthening collaboration is essential to the ASD person becoming successful. Educating people not only in education but throughout communities is what will have a positive affect for integrating ASD in the real world and will assist with acceptance. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Karen McHale	The biggest problem within the autistic community is services for adults with ASD. Especially those transitioning into adulthood. Many communities lack services. Again, here in California, we have the Regional Center, which helps provide the services listed above. But many do not know about these services or are not referred. Again, it's lack of information. And many states do not have these services at all. This leaves many ASD adults floundering. As a forty-seven-year-old adult with autism, who was not diagnosed until her children were diagnosed, I know how hard it is to go through life undiagnosed. I had difficulties holding down jobs, had difficulties making friends and in relationships. I got lucky that I met a man who tolerates my ASD behaviors. But living in a neurotypical world without an ASD diagnosis lead to severe anxiety and depression. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults; Improve transition services, and provide better assistance for young adults and their families during transitions;
kathleen dugan, parent of twins with autism	employment assistance, financial planning adult service Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Amy	Financial planning & community integration Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Anonymous	Vocational training and employment opportunities are important. Community focus should be on acceptance, and there needs to be more funding and access to self-advocacy and support groups. Employment opportunities and training are essential for autistic adults. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kristy Powell	I'm interested in life skills that are intuitive to most individuals, but not necessarily so for those w ASD. I am keenly interested in the neurodiversity movement. I hope that once my 4 yr old is in college, there will be policies in place to help her succeed. Workforce accommodations! I have a diagnosis and I'm afraid to share it for fear of being stigmatized. However it would be wonderful if neurodivergent people could be accepted for our strengths and have accommodations for our problem areas. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
K Wentrack	Housing and services for adults Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous	vocational opportunities higher education support residential treatment-housing respite developmental information for lifespan community integration. Services for adults with ASD Services for people with ASD who have significant needs Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Leanne GoldatE	I think quality of life and transitioning is important. I want my son to know he's just as valuable as everyone else. He will be able to live a "normal" life in spite of his diagnosis. I believe workforce development is important. This is not a sentence to a life of being unable to be a productive citizen. Knowing that there is a place for our kids in the workforce as they get older will only benefit them and make them feel that they aren't being treated any differently from other people. They belong just as much as everyone else in any position they are capable of in the workforce. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	The need for career planning, life coaching and social navigation is devastating for people with autism. Because society views people with autism differently because of their intellectual skills, it is increasingly difficult to get services for supported employment services. Research on workforce development with companies who have initiatives to hire people with autism would be valuable to share data. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lisa White, Family Member	It is my biggest fear that my child will be on the streets because he has alienated my family, friends, church, etc. There has to be a better way to help these people integrate into society and have a community to belong to. I have resources to give my child upon my death, but who will help him live and manage these resources? Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Lisa	Autism waiver needs to be fully funded so there aren't years of waiting lists. Job training. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Stephen D Lopez	health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Housing is a huge issue for adults with autism. There is a profound shortage of safe, well-staffed and funded housing. Job training of the autistic individual, as well as employer training, should go hand-in-hand. Not only do autistic people need training, but non-autistic employers need training in recognizing the potential of the disabled. Real jobs with fair pay are in way too short supply. Safe, small group homes that are properly staffed and funded are crucial for many adults with autism. So are job training and employment that is appropriate for the individual. Fair pay, safe environments, job coaches, and educated employers are all needed. Children AND adults with autism need protection from scams and abuse. Adults need training in how to navigate everyday issues such as how to fill out paperwork and what to say on the telephone, etc. -- all the routine stuff non-autistic people take for granted. Ideally, every autistic person should have safe mentors they can turn to for help. Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Even with education, many children on the Spectrum do not really understand the concept of money. Care must be taken to provide real world application as early and as often as possible both in home settings and educational programs. It seems that most diagnoses and intervention focus very strongly on early childhood. There are many children between that stage and preparation for adulthood (the second most helped group) who need help. These children may still be unable to communicate or provide personal care for themselves. Often they have yet to form any real friendships and may not even understand the need for them. At the very least, their physiology is changing and they need help dealing with that. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Maggie Halliday	They talk about a transition plan required by law.There was none documented , everything I spoke about at her iep meeting and thought was part of her plan was ignored.Access vr was her only transition goal from hs.She was put out at 18 and I was given a number to call.The other young kids who went to school with my daughter are young men now.They live home with their parents, get no services ,have nothing to look forward to and can't function in society. They can't get jobs and can't advocate for themselves There is nobody monitoring these children and their progress. You can't go by Iep goals and school evals . The goals are usually basic and pretty useless and the teachers are taught to all ways make very thing sound positive. There are very few employment prospects.Stacking shelves or gathering carts a tShoprite is the only job prospect in my area. They need training and support as young adults and assisted employment in jobs that are rewarding. Most of these affected people could work helping other affected children. They need jobs that help them to function in society not jobs that isolate them further Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Education, employment, Financial planning - home visits if not living in group home. Provide more independent living options outside of group homes. 3. Creating more programs for HFA teenagers and young adults. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Frankly, if we focus resources more heavily on early intervention (ages 5 and under), there will be fewer adults who need numerous services. However, those over 18 often have no options for support, so adult services are certainly still important. Researching workforce development should be a top priority. Many individuals with ASD want to work but are underemployed or unemployed. With proper job placement and employer training, they could do so much more! Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Maura Donahue, EMARC Adult Foster Care Program	I believe there is a need for additional funding for transitional services for folks with ASD and other disabilities. There needs to be more focus on vocational training and continued job coaching especially as we continue moving away from sheltered workshops and into community locations. I believe every state should have both Adult Foster/Family care programs and shared living programs to support individuals in a home/family setting. There needs to be a variety of housing options which individuals and families can choose from - without waiting lists. While our state does not have wait lists per se, there is a tiered system where some families only get help as parents age or have health issues. If an individual wants to live in the community with supports, DDS needs to make that a priority as well. Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	employment, housing and financial planning are areas that are all underserved. workforce development, affordable housing options and community inclusion. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michael Sweeney, Autism Dad and Real Estate Developer	My son is 18 years old and we are looking at the next stage of post-21 life. Then we are looking at the post-Mom&Dad are gone stage of life. We have moved [Minor/Dependent Name Redacted] to a "Self-Direction" model in NY State. It is working great for all parties. I am saving the USA and NY State money and [Minor/Dependent Name Redacted] has a GREAT Caregiver that has been with us for 12 years. This is freeing me to do work for our population. Candidly, every meeting that I have with NY State OPWDD, they reference "Washington" as this distant entity that has it in for NY State. Today, I read: "Guidance to HHS Agencies for Implementing Principles of Section 2402(a) of the Affordable Care Act: Standards for Person-Centered Planning and Self-Direction in Home and Community-Based Services Programs http://www.acl.gov/Programs/CIP/OCASD/docs/2402-a-Guidance.pdf" and I read it as Washington is trying. I need to be on a special task force where I can build alternative models that WILL save money and deliver better services in NY. My wife and I are a great team, but what happens when we are gone? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
Niki	This is one of the most emotional/ financial draining thoughts And nightmares of the parents with adult disabled children. There is absolutely nothing for an aged out developementally Disabled people that works. The housing is the most important issue when the parents are not able to continue or are deceased. Safety of these people ,,physically and emotionally ,( not to be abused) are the biggest concerns . If those are non existent then the rest does not matter. Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Neva Parkins, Parent and Advocate	Transition services. Adult Day Support Activities and Employment. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Nan McVicker	"All of the above". Education and training are not adult issues - they should have been started in childhood. Employment is an ongoing issue. Adults should not be abandoned after they "achieve success" by getting a job. Few adults keep the same job throughout adulthood - why think that autistic adults are any different? Financial planning needs to begin in childhood, also. Financial training needs to start young, too - nothing like being in your 20s or 30s before learning how to write a check, open a saving account, or how to make a budget! Community integration and housing depend on education and training of the community! Why is no money and research being spent on inclusion from the "normal" side? Services! Services through the lifespan! Most research, policy, most focus! - i. on children. But people on the spectrum are only children for 18 years. There needs to be more focus on how people on the spectrum can fit into a neurotypical world, hold jobs, and be as self-reliant as possible. Broken record time. As scarce as services are for too many families of autistic kids, there is almost nothing for autistic adults. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Oliver Wendt, Purdue University	- aging in autism - vocational training Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
AX	Mental health staff have received little training related to this issue and ways to help the individual function effectively across the lifespan, such as helping with college and employment transitions, aging. How can families transition between child and adult services in a way that better meets the needs of the individual with ASD and the family. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD
PETER MAZURE, parent	ADULT SERVICES, ESPECIALLY RESIDENTIAL SERVICES, ARE TRAGICALLY LACKING AND UNDERFUNDED. MEDICAID IS FAILING TO MEET THE NEEDS OF PEOPLE WITH ASD IN EVERY STATE. A HOUSING DISASTER IS LOOMING FOR PEOPLE WITH ASD. ADULT SERVICES, ESPECIALLY RESIDENTIAL SERVICES, ARE TRAGICALLY UNDERFUNDED AND UNAVAILABLE, PUTTING AGING PARENTS IN A TERRIBLE SITUATION. WE ARE APPROACHING A HOUSING CRISIS FOR PEOPLE WITH ASD. MEDICAID IS NOT MEETING THEIR NEEDS. MORE ATTENTION MUST BE GIVEN TO ADULTS WITH ASD. WHAT ARE THEIR HEALTH PROBLEMS? HOW ARE THEY DIFFERENT? ARE THEY BEING CARED FOR PROPERLY? Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Colette Tarrani	housing & aging, financial planning and community integration Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Anonymous	Consider engaging more corporate sponsors so that a movement can inspire other employers to take part in access programs for individuals with ASD who want to work. Finally, transition services need to be implemented into IEPs as early as reasonable in order to begin a career path for those on the spectrum so that they may lead productive lives which improve self-worth and community relations. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Reem Tarantino	Too often when a person with ASD learns skills and increases their level of function, they are no longer considered functionally eligible for services and supports needed for their safety and welfare and to prevent regression. IQ is too often used for eligibility to access services for the autism population even though ASD is not an intellectual disability. Once people with ASD age out of childhood, appropriate services, supports, and treatments are even harder to access. Too often staff working with the developmentally disabled are not properly trained and do not have adequate knowledge about ASD, Programs, services, and supports for developmentally disabled people often do not adequately and appropriately address the needs of the autism population - examples are vocational services, residential, recreational, education/technical training opportunities lacking after high school. There are often long waits for waiver services, especially for adults with ASD. ... When people with ASD reach adulthood, it is too often very difficult to be able to access needed services and supports. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD
Sarah Hunter	Housing, transportation, and job development for adults with Asperger's syndrome. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Scott Kramer, Director, GCA Centre of Adult Autism	As things stand right now for older adults with ASD, I am not very optimistic about the future. More research studies have been conducted over time with respect to children with ASD. I am beginning to see an emerging trend in the area of young adults and adults with ASD. The next step in the process are research studies of the elderly with ASD. Earlier this year, a Swedish research study concluded the older ASD adults died prematurely around 15-20 years before non-ASD adults. This will continue to be an issue going forward. I think a major consideration that can and should be addressed is this: how can local communities build a support system for these individuals when they are younger instead of older? The question then becomes more of prevention instead of reaction. Taking steps earlier on in the lives of ASD adults earlier in their lifespan, as opposed to society waiting until they are older - then thinking, "We have even more serious problem; now, what can we do?". Attack the problem head on. Don't react to it. I think one of the most challenging issues involves the lack of services for ASD adults, from transition into adulthood to the elderly. Independent living is a primary focus of many of these individuals. They want the opportunity to live their lives fully, like those who are not on the autism spectrum. Much of this has to do with community inclusion. Many ASD adults grew up isolated as children, because they were not accepted by others. Through the building of community in an environment where inclusiveness is present, many more of these folks will feel valued. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Shannon D'Aquila, parent	Our society has given vocational training a bad reputation. Not every child is meant to attend college. Our world needs mechanics, plumbers, A/C tecs etc. Wood shop, mechanics, welding, construction and home economics for examples have been pulled from our schools. Children both typical and exceptional have not been given the opportunity to find their talent or skill set since focus is heavily on common core standards, test scores, and report cards. They have been stripped of their chance to be proud of what they are good at. We would not know Mozart if he were never given the opportunity to touch a piano. Strengthening collaboration goes hand in hand with community education of ASD. Businesses may be willing to hire an autistic girl to say work in a doughnut shop but are not wanting her isms such as scripting to run clients off. Perhaps businesses that offer ASD adults to work in them could be provided with literature for the customers educating them on the exceptionality. They could post a decal at the entrance along the line of proud to be a piece of the puzzle. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sara Luterman, Self-advocate	There's an enormous gap in "lifespan" research in general. Autism is not a terminal childhood illness. Autistic children grow up and become autistic adults. The fact that adults are considered a separate category than "proper" autistic research around early intervention or biology is a problem in and of itself. We need more research on community inclusion. Employment, housing, community interaction, and achieving as much independence as possible are key issues to achieving good quality of life for autistic adults. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Michelle Wolfson	Adult services (all sub-categories) Transition Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Philip Spottswood, ASBG	All of the above! The lack of an integrated support system for adults on the ASD spectrum. Helping families with adults on the spectrum. Supported housing and rehabilitation/employment help on an ongoing basis. Themes Addressed: Improve the quality, accessibility of housing options; Need assistance for adults with autism and their families in navigating available adult services; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	Hoping the future gets better before my mom dies & I end up homeless b/c I can't support myself w/o her help. I can't get health services under Medicaid in Alabama. This forces me to have to buy BCBS which takes almost $500 of the $733/month that I get! What quality is there to life if I can't afford what I need w/o help? Aging is scary. I wasn't diagnosed until adulthood, so I missed out on any transition services. And there are no adult services. All colleges need programs for autistics. Most autistics quit vocational services to inefficiency and lack of understanding about autism. Many autistics are underemployed or unemployed b/c we're not disabled enough. None of us can afford housing. Financial planning: how can we plan if I can't save my benefits past $2000/year? I can't plan financially when I'm not allowed to save. If I get a job, I lose benefits. If I get married, I lose benefits. I can't win for losing. I want to have a house, transportation, food, medicine, healthcare, etc. but I can't save for it. The ABLE Act had promise until someone capped the age at 26. How does that help? Community integration: churches flub this all the time. I want to go church but they don't want me. They don't get autism & they don't get autistic adults. Rec services - we found out I qualify for Special Olympics, but NO ONE EVER gets in touch with me about plugging in. Many of the services cost too much or cap the age. The most important priorities are healthcare, housing, education, employment, community, church, etc. The gaps are involving adults. Adults do not have a lot of services available to them. Especially autistic adults. Ignorance caused adults to be pushed off the service cliff. While it is important to recognize autism in children for the benefit of early intervention and educational aspects, it is just as important for autism in adults to be acknowledge and for them to have continued access to services in all aspects of life so that more of their caregivers do not have to worry so much about what will happen if they die. Are there services once one becomes an autistic adult? Seems there are none. And that's what is hurting the most. We simply need more services for adults. We are past the point of just talking about what is needed and already to the point where we need to do something last year! Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Employment and Housing are very important. Becoming more independent. Especially for those whose parents are aging or who have no support system. Also, making sure those with Autism have healthy lifestyles when it concerns exercise, meals, Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Trish Bawn	aging- the adult group is sorely under educated and under estimated. service access and utilization- specifically for adults as there is a large gap in available adult services Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Teri Doolittle, PA-C, MHP, DHSc	Vocational training must be provided with adequate direct supports. Direct Support Providers are often themselves beneficiaries of support services. When placing an individual in any setting, it has to be structured, pleasant and acceptable to the Direct Support Providers. It has to benefit the people who are providing the support - not burn them out or put them at risk.Pay more attention to training individuals who provide consistent and reliable direct supports, and reward them with student loan forgiveness, insurance, housing stipends, and educational grants. Don't push them into workshops, place people where they want to be. Vocational services need to move out of the sheltered workshop - there should be a firewall preventing TTW vendors from benefiting from keeping an individual in a setting that does not match their actual career goals or abilities. The abuse of the TTW system must end; there is no reason why executives in non-profits should be paid huge salaries to keep a system in place that runs best when people are held back instead of moved forward. Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
mary tutterow, www.healingfarm.org	I cannot foretell the future, but if things continue as they are, the circumstances are grim in the area of transition to adult life. We MUST educate the public to rally support and acceptance. People with special needs can no longer be fringe citizens. We need to start with the churches - getting them included and accepted - then teach communities how to do it. We are doing that at www.healingfarm.org. High Schools need to be more pro-active in providing families with accurate information about what is available after kids graduate. Most families believe that through the IEP process, they can have some kind of guaranteed placement for their young adult. There is a severe shortage of programs for young adults and parents need to be aware and make plans well in advance for what their young adult will be doing and who will be funding it. Post high school services are a great concern. We have some options for adults who may need residential services, but the average young adult (especially those who are low functioning) has few options for contributing to community - whether it is job, continuing ed, volunteering, or going to day care. #1 cause: Little government funding for programs addressing these gap years. #2 cause: Parents are unprepared financially for private care. #3 cause: Pay scales. The average pay for a person working with adults with special needs is minimum wage. People don't get degrees to care for adults. They get degrees to become teachers. #4 cause: Public awareness. General public is not aware of how our most vulnerable citizens are being treated so the relatively few private service orgs are underfunded to meet exploding need. We must have "adult care" be a career field with excellent training and much higher pay. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD
Sheila Stauffer	My son was supposed to be integrated into a residential home after H.S. His father went for guardianship so he could take the money from S.S.I and now my son sits at home doing nothing. No program or work. He is depressed and suicidal. I am concerned but I have no money for attorney. I worry about his welfare and what might happen if and when his father passes. Nothing is being done about his employment or future housing or community integration. Once again research should entail all factors to better understand and also policies should be looked into for welfare of students graduating H.S. and in court cases. My son sits at home doing nothing right after H.S. because the courts have never followed up or enforced any type of program or intervention. My son lives with his father who won guardianship and nothing was done or even being done about his welfare. There needs to be better policies enforced to advocate for people fresh out of H.S. His father took him out of the program that he was supposed to be in for work and both he and the court system are ignorant of this and safety and psychological issues regarding autism. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration. The most important priorities and gaps in services is in the area of community based services for autistic individuals over the age of 21. There is simply nothing for this enumerated group once they age out of public education. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	On the adult level the service system should include education, employment training, community inclusion, and access to housing. On the adult level the service systems, such as OPWDD in New York, need to be more responsive and pay service providers staff a wage corresponding to the significant effort required to perform job duties.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Alexandra Valentine, parent of a young man w/autism	Health and quality of life for our son is the most important issue for us, but also community integration,employment. Safety alwaysThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	The most important step is to ensure proper care when direct families are no longer able. Employees hired to work in supported living or the group homes that continue to remain open need a higher level of education and wages. When agency's pay minimum wage or slightly higher they do not retain and recruit qualified people. There are those that are wonderful, but to ensure consistency changes need to be made. These individuals deserve better. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD
Amanda C Nicolson, California Autism Center	Services for youth and adults is a huge area of need. There is tremendous room for development in all of the above mentioned areas. Very few programs exist to support adults on the ASD spectrum. Health services are very difficult to find as the ASD diagnosis seems to overshadow any other medical issue. Job training and support could be the number one most needed area as many adults on the ASD spectrum could support themselves and contribute to the community with some assistance. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Ann Hart	As the parent of a 30-year-old with autism, I can tell you that I am very, very worried about what will happen when my husband and I die. As long as we're alive, I think we can ensure that our son has a high quality of life. It's difficult and expensive but we can do it. When we're no longer able to serve as his case managers, I am afraid that he will be institutionalized. Adult services is the next frontier. Currently, we're making huge investments of time and money to help children and then, when they finish school, many of them languish at home because many programs for adults with disabilities are not geared to adults with ASD.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
Anonymous	1 transition & adult services 2 vocational training 3 employment 4 housing 5 financial planning 6 community integration 7 quality of life across the lifespanThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Arzu Forough, Washington Autism Alliance & Advocacy	Currently most adults are not future ready upon graduation from high school. This is especially true for those eligible for the adult transition programs (19-21) due to nature and severity of their disability. In addition, working age adult policies make work the primary service for adults with a developmental disabilities. However, there are specific barriers to Community Access for individuals who are unable to secure and maintain competitive integrated employment. More attention needs to be given to improving community access and quality of life for this very underserved population. It's imperative to gather data on the numbers of individuals who are unemployed or significantly underemployed to help inform gaps in infrastructure for adults with autism.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Harriet Austin	I've already mentioned that transition is a time when services are often lacking, and individuals are suddenly without a community while they figure out how to step into adulthood. Once they are in the work world, there is often still a lack of community. Agencies may help the individual find an apartment, but living alone in an apartment without other activities is a very isolating end point. If the person doesn't drive or have the skills to create a social life for themselves, their quality of life may be very poor. Can we create an international Clubhouse Model for Autism, like the one that exists for those with mental illness? Clubhouses are run by members with help from paid and volunteer staff. There is a schedule of social activities for members to participate in, in addition to help with housing and finding work. I'm including the link here for more information: http://www.iccd.org/whatis.html. More work needs to be done in helping individuals transition into adulthood successfully, especially those who have a higher IQ and may not be eligible for the usual services, or they may not be appropriate for this population. Young adults fall off a cliff after high school ends. Colleges and universities could be the logical next step in helping individuals gain skills and independence within a community setting, but there aren't enough autism programs designed specifically for this population. How can we fund and implement more programs? Can we find a way to then transition students from college to work and independent living afterward? Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
CATHERINE BABBITT, family member (mother)	I feel there needs to be more education/training in the organizations that are in place to work with the developmental/autisim individuals. would like policy's looked at in regards to this. not to relegate indivuals to janitorial or fast food services. also would like to see more acceptance in college levels to have help available without needing to pay extra. I feel this would give more opportunity for success for these individuals. Currently in my area any extra college services needs to be brought in by the person advocating for the individual.Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Betsy Berman	Transition and adult servicesThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Betsy Cohick, IU 13/parent of adult son with autism/ID	Consolidated waiver/group home/community living My son receives a consolidated waiver and SSI to pay for his living expenses. It is my understanding that consolidated waiver funding cannot be moved from state to state. It also is hard to get a group home in a location that an person would chose near his family. Consolidated waiver funding is almost impossible to obtain. There is a long waitlist in PA and I believe in most other states. Many people are waiting group home placement or adult services due to funding not being available. Once you get the funding it is difficult to move if needed. For example: Once my son was in a neglectful group home in an unsafe location. It took us about a year to get him out of that location because there was no group home available to take him. We couldn't take him home because we were fearful of losing his funding and unable to provide for his needs. It took my son years to finally get a good group home about only 30 minutes away from our home. Additional information for question 6 (Lifespan issues I had too many things to write and went over my word limit) Long term saving accounts so that individuals can save for items over $2000 without losing their benefits. Many individual in groups homes do not have family involvement. I believe some states (Ohio?) are starting to allow certain accounts for this but are charging a monthly fee for this service. My son doesn't have any income except SSI and the majority goes to room and board so it takes a long, long time to save money. If he is charged a monthly fee it takes even longer. Some disability equipment medical and recreational is extremely expensive. For example: my son's bike/wheelchair sports equipment is near $4,000. We had help through a fund raise group IMable but if we didn't it would have taken years to save to get it and a monthly fee to save that amount would have made that wait longer. Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy
Blake Hall	Aging, transitions, Alan community integration.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Vocational training and community integration. Work and living preparation.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Employment and financial Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Services regarding the lifespan of individuals with disabilities. How to plan for a individuals future and ensure long-lasting effective support services.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Beth Rutt, parent	I am finding that there is a huge gap of services for the high functioning adult with ASD. They have skills, college degrees, and want to work but can't get their foot in the door. Parents do not have any place to turn. They are constantly worried about what will happen to their child when they are adults and they the parent is no longer able to help them. What then? This is what impacts the families every where. The lack of services for adults.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Carol Bunten MD, The Vancouver Clinic	This. All of this. As the incidence of autism has increased dramatically, services and guidance for adults and families are lagging behind. We dream of a future when our children can be supported enough to live independently with a job they can look forward to and continued programs to help integrate our children into the community. I look forward to seeing how ABLE accounts will work going forward to protect disability support while allowing for disabled adults to work.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Nancy Cheak-Zamora, University of Missouri	youth, young adult, adult independence issues, health care transition, exiting education system transition. This needs to be more than 1 priority. interventions related to increased independence, job training, and secondary education success. services promoting independence for youth and young adultsThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Vocational training and financial training should be a top priority for individuals transitioning to higher education. Again, focus should be on allowing anyone with ASD to contribute to society upon adulthood in any way they choose.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	health and quality of life across the lifespan, aging, transition, andadult services, including education, vocational training, employment, housing, financial planning and community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Now that my son has graduated high school, it seems that we are mostly on our own. I feel that young adults with ASD need much help as they transition into the world of work & community life. There should be programs in place that assist these young adults in finding meaningful work, help them plan a daily schedule & have a reason to wake up each day. Individuals with ASD need to be empowered to act as their own advocates. As they grow into adulthood, they need to know what their rights are. Taking an "Introduction to Disability Studies" class at a nearby college with my son was an eye-opening experience for both of us. Adults with different types of disabilities need to work together to become fully integrated in their local communities. Advocacy groups should exist in communities to teach ADS and other disabled adults how to be effective advocates for themselves - these are not skills often taught. Children on IEPs are raised in the system to "be compliant", not to question the status quo. High school history classes should include Disability History - this is something missing from the curriculum just as African American history and the history of other minorities is something still being added to history books.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Services and research should take into account the perspective and choices of adults and their families/caregivers
Allie	Transition and risk for interpersonal relationship issues as well as job loss or difficulty finding a job Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	There need to be more facilities for adults to live independently from their parents, yet still live with people who will make sure they get to jobs, school, take medications, are able to attend to basic personal needs such as bathing, grooming and getting to therapy. They adults with ASD also need training on practical life skills such as managing a job, having a bank account, learning how to use a smartphone, etc.Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy
Cory Gilden, parent	Fair wages for employment and independent choices for housing (and support that goes with it) need a lot more support/legislation.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	ageing parents raising aging individuals with autism need new housing options and resources to assist them with elderly transitions little to no research identifying evidence based interventions for adults existing group home models ineffective for many w autism need new service and residential models. services to support adults, research what works for adults, housing policies to expand affordable housing development. mental health services and supports are severely lacking for adults with co occurring mental health and ASD diagnosis, gross shortages in psychiatrists and lack of accurate information on effective multiple psychiatric medication management. expand Medicaid coverage through lifespan of those with ASD limiting to age 21 discriminates against thousands of adults who continue to need ABA/therapeutic support, Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Chandler Perry, MS, BCBA, BSL, Indian Creek Foundation	I am a behavior specialist consultant. There seems to be sparse research in the area of interventions applied specifically to ASD adults living in home or community settings. There is also a gap in providing a good transition from a highly restrictive or institutional setting to a community living arrangement. There needs to be support such that restrictions can be initially maintained and systematically faded away. Too many individuals who are not ready for the community and then require ongoing intensive staffing, multiple short-term hospital stays, exhibit behavior that endangers other, etc. because we can't impose the restrictions that helped them achieve stability. Once they have had time to adapt to a new setting, we can peel away restrictions. This is currently not allowed. There is a gap in transition from children's services to adult services. Families are unaware of services and/or unprepared for changes in services delivery. Programs that provide services for adults are generally poorly staffed. By poorly I mean that the staff there is usually extraordinary however those people are leaving and are not being replaced. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD
Autism mom, Autism Society member	There are gaps in every item on your list--lack of transition services, lack of real employment options, complete lack of housing, lack of adult services. Every single aspect of this arena needs improving. Workforce development and actual jobs are needed for people with ASD.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Christine Lai	There need to be more job training opportunities for adults across the spectrum of ability, from the least to the most able. Many parents have resorted to creating their own employment opportunities for their adult children with autism but this is a path only available to those with significant means. Adult children with autism have gifts that can be harnessed in a variety of industries and the US could look to the corporate examples in Europe (SAP, etc) that have programs designed to recruit, train, and promote adults with autism. Corporations also need to be encouraged to hire and retain these individuals, perhaps through some kind of tax incentives. Corporations and human resource departments within corporations also need to have a higher level of awareness of the social deficits that are part and parcel of autism and how this can affect hiring, advancement, and retaining employment for adults on the spectrum. Affordable, supported housing is a huge issue for families with adult children on the spectrum. Every person deserves a chance to live as independently as possible.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cyndy Langat, Kenya Autism Alliance	What is out there for our kids? What does Law enforcement know about Autism? How trained are they on such children? That's a big concern for me because my son is now 14. What jobs are out there? What policies do we have in place for ASD kids?Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	Same as the previous question! More and better services! Better staff training, with attention at quality of life, or we risk neglect and abuse! These people can be difficult but also vulnerable! We need to pay better attention! Inadequate services for autistic/asperger adults due to lack of understanding the condition and poor staff training resulting in ineffective and negative outcome. In my opinion, there is no adequate services for adults with autism! There are a lot of programs for children, which is great, but not much for adults! These children are going to grow up, and where are they going to go! How will they be taken care of! And what happens after their parents die! We urgently need more and better services!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
J. Berryhill , Autism spouse and Parent	Early training and support leads to less spending on adults. But my local school district ( one of the best in the state) has a team priding itself on denial of services. The schools have no vocational programs! Adults have even less in the way of preparation and support. Something has to be done.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Anonymous	Education, vocational training, employment, housing, community integration, transitioning, health and quality of life.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	It doesn't seem like the government agencies care much about adults with ASD. Once a person ages out of the support of the school district, that person is on his own to try to find out how to live an enjoyable and meaningful life. Many vocational and employment programs are full and have long waiting lists. As stated before, the job placement agencies don't seem to be spending much time trying to find new employment opportunities so that more clients can be served. There needs to be government incentives to employers to hire these people, even the ones that are socially challenged or have difficulty communicating. Rents are very high and that precludes many people from being able to live on their own. Community integration is difficult because many community activities cost money and people living on social security don't have much money for extra activities. There should be community based places where these individuals can go and socialize without having to pay a fee. There should be more vocational training programs so people don't have to be on waiting lists. Since many families don't have the money to pay for quality of life activities for their adults with ASD, the government should subsidize this. Research and services for adults with ASD are a priority for me. Most research centers around young children. Once children become adults and are no longer serviced by the school district, it seems like families have to struggle to find services and activities for their adult children with ASD. Job training and placement agencies have become complacent. They either aren't actively seeking new job opportunities for clients or are lazy and don't want to put the effort required into finding new job opportunities for their clients. Often these agencies have long waiting lists for people to become clients and once they are clients they have to wait for someone to leave in order to even be considered for a job placement. Also, agencies prefer to place the higher functioning clients in the jobs which leaves the more socially challenged clients without much hope of actually getting employment.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Debra Schafer, Education Navigation, LLC	The transition planning process is broken. Schools do not address the needs via IEPs but rather give little real time to developing transition plans to prepare students for college, employment, and life. Once a child graduates, services stop and this further taxes families. Many parents are unaware of what life after school truly means. Others lack the guidance needed to help prepare their children for higher education, many of whom can succeed in college. Parents are not even aware of offices of disability services in college no less how to secure the supports their young adult children need. Employment is another issue requiring a comprehensive assessment of how to prepare a child for the workplace. And employers lack the training and support they need to appropriately support employees with ASD as well. Housing issues, particularly when it comes to independent of semi-independent living, are a gap that must be addressed. Parents find themselves either unable to secure a transition living environment for their children or simply decide that their child will live with them forever. And in terms of financial planning, the vast majority of parents are unable to plan as every dollar is going to maintaining their family and trying to determine how to access and/or continue with the services and supports their child needs. There are few viable options to meet the lifespan needs of adults with autism spectrum disorders, although many apps are being developed to help (children as well) with elopement, planning, and communication. In terms of the workforce, as previously mentioned, many with Asperger's Syndrome are capable of securing professional positions...*with* support and accommodations. For others with ASD, the workplace needs to be accepting and accommodating with means education, training and support. Another point -- schools keep the "bar" low for many children and teens with ASD, leading them to graduate from high school unable to work, attend college, or live independently. Far too many children are placed in "life skills" programs that do not capitalize on their strengths and provide them with opportunities to excel vs. exist.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I am very concerned about my son's future and the availability of quality living situations that fit his particular needs. The freedom to choose and the ability to have many choices of housing. Employment is needed. Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Destiny , Mom of two on spectrum	Early intervention is important but so is lifespan planning and career training. As a parent, I worry most about when I die. Who will be there to help? What will happen to my beautiful innocent boys?Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Chris	Transitioning to adulthood, social skills, and life skills, along with vocational training. Outreach to ASD assimilation into different segments of society and pathways for successThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Dean	We need to turn-over our cultural judgements and feelings COMPLETELY in regards to ASD people. Employers are cold. Trying to get a job is cutthroat and corrupt and rife with injustice! The few employers who are willing to hire ASD people would only do it for one or two people as charity cases. They will tolerated, then will annoy their cognitive-normative co-workers, and then they will be hated. They will not be valued. Our ENTIRE CULTURE does not value ASD people. (period) I deeply fear for the future. To be honest, it is employment that we need to most work on....and I haven't a clue on what to do. We MUST change the hearts of Americans to not shun, hate, nor abuse ASD people.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	No age appropriate services available after high school in this community! Most asd students are not ready for vocational school without support services. Voc. Rehab. Is available to a few students that might be able to work without support, but need help getting started. There is nothing for those that need more support, when a sheltered workshop isn't an option. There is a gap in services for after high school...where to go , and what to do. Most are not ready for college or to live on their own, but there is nothing out there for them. Workforce development... the workshop is appropriate for some people...but there is talk of closing it. That's all some people live for, is there job in a safe place! Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Diane	Transition and adult service for education and vocational training. especially in getting them out of defense mode so they can get jobs that have meaning instead of being stuck in low paying occupations with no benefits. Transition into adulthood and adulthood services. Coaching and therapist that can help them adjust to becoming and adult. College assistance that doesn't cost a fortune. For example, homework is a major issue for autism/ asperger students. They need someone availabel to them to sit with them during period when they need to study and do homework to refocus them. A new way of teaching needs to be implemented into colleges because these students are extremely smart but become overwhelmed in the school system especially when it comes to being out of the classroom when they need to organzie, study and socialize.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Daniel Valencia, Autistic Self Advocacy Network	Most services for autistic people are only for children, even though 3 out of 4 autistic people are adults. The most important research priority for autistic people is to stop funding research on what might cause autism, and start funding research on how to improve autistic people's quality of life.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Elizabeth Taylor	Much more public awareness of adults on the full spectrum and the awareness of lifespan needs and integrative service models that are related to providing quality of life and interventions for adults. Autism specific coordinators for every community social services funded entity. Adults especially get thrown in the vat with DD and are not successful in adult programs many times because the community coordinator has no background in Autism specific interventions and environmental support services.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Relationships, friendships, romance, and sexuality (not as a problem but as an expression) LGBTQ autistic adults Inclusion Employment Higher education Discrimination across the board Autistic people parenting Incarceration among autistic adults, controlling for race and educational background to try to make sure people do not get thrown in jail for being autistic Communication strategies across the lifetime Services for older people with autism Autistic self-advocacyThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
elaine nelson, young adult son with autism	1.adult services, vocational and special college programs so that a further education gives the young adults a better living wage for independence. 2. sell contained communities for them to live ( like 55+) where they can walk to movies, food , entertainment and have a affordable home, condo, apartment, with minimal assistance and social programs since that is very hard for them. 3 Many young Autistic's are now entering adult and there is not much for them, programs, education, housing, its like they turn 18 or 21 and nothing where many can be trained and educated under special circumstances with assistance form the community colleges. They do not all have to go on Social Security given the extra help as they go in to adulthood. The laws are pretty good for k thru HS, when followed. We now have to focus on all the young adults that have nothing to look forward to but given the chance and correct programs they could go to vocational college or community college with THE CORRECT ASSISTANCE FROM THE TEACHERS AND ADMINISTRATION . NEED COMPLETE DEPARTMENTS NOT JUST ONE PERSON RUNNING THE SECTION.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lara Evans	Again, there is some services, but way underfunded, lack specialized training/focus for ASD. quality of life just isn't there for large number of ASD community. Education support not there, transition spotty at best. Little to none adult services that again specialize in serving ASD adults. There is some vocational training, but due to poor education, options and income dismal and hard to come by. Getting quality help for legal services, setting up trusts, wills that will not endanger and aid received is costly and out of reach for most. Community integration is totally possible for many ASD, but going back to early education and program services received... this is currently very difficult. We need more money to go into support services, workforce development for support services and those they serve. Having centralized service hub/program that can help provide aid, counsel, referrals, and community collaboration. Cannot tell you how much this is all needed. Thank you for giving us a chance to voice what's needed.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Erika	As an adult who did not even discover autism until I was nearly forty, there have been absolutely no resources for me whatsoever. I have been unemployable and socially isolated for most of my life. There are many autistic people like me, who have no resources available to help with things like employment. And many of them are intellectually gifted and would make fine employees with fairly minimal accommodation.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Erika Schron	Adult living facilities are needed in which our young adult children can learn to thrive, gain skills and become as independent as possible. Parents need help and resources for our young adults on the Spectrum. What jobs are available? What job training is available? What social skills classes? What are they supposed to do to continue to learn to be independent? If they are not capable where are the over 1 million autistic children supposed to go when they become adults? What happens when a child turns 18 or 21 and out of school, then what? What services are there for the young adults that are not able to live on their own? Or those that need adult living facilities? Where are they supposed to go?Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	A young adult's success should not depend on the school district they attend. Why should one high school have an amazing transition program while another has kids shredding paper all day. Look at the programs that have students' success stories regarding achieving postsecondary education or gainful employment after graduation and set that program as the standard. We need more funds for adults on the spectrum to provide services that will allow them to live independently or in community. Get rid of State Supported Living Centers!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	Volcational training and housingThemes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Gordon Bourland, Ph.D., BCBA-D	Many more resources need to be devoted to research regarding development of and support for strongly evidence-based interventions for persons diagnosed with ASD who are adolescents and adults. Such support is needed, also, regarding living and intervention possibilities for those same people (recognizing that many cannot or prefer not continue to live with their families as they mature).Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Gillian Pilcher, Parent of 2 with high functioning Aut	Transition. Especially the skills (including social) needed after a transition. Education on getting a job would be nice too. Schools and colleges often ignore parents because of the age of the child or they think they are "too smart to act like that."Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Gillian Stein	Lifespan issues concern me the most as my son is now a teenager; they have one grandparent on my side; how long will I live? what will happen to him? He deserves a chance to be employed; live on his own and have continued support and advocacy. Without me, how will this happen? We need research to support the fact that these kids are employable; want to be successful; want the same things other young adults want. There seems to be very little to nothing, especially when these kids turn 21. That is sooner than I'd like to realize for our family. He can't sit at home all day. He will have a metabolic syndrome faster than we can blink from being stationary/on his computer. Humans get depressed when alone and not feeling purpose. He needs purpose too. Services start with birth to three if you are lucky, then you are kicked into a pre-school program and you are convinced that services are actually more (they are not) and then you are lucky, you move into an integrated school program and your child can be taught. You might see your child supported. Then they "graduate" and there is a HUGE gap. What happens to the adults? (And this is only assuming you don't have other co-occurring issues which impact education; may include hospital stays or residential stays -- where do these kids get the support and care they need? Where to families go to get the support and care that THEY need? Sometimes residential IS the answer). There needs to be research on effective mixed housing supports. There are communities I've heard about that support the family system in village communities. It would be helpful to use research to show effective ways to educate kids on vocational skills/soft skills and help them be appealing to employers. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	transition to adult services with vocational thraiing housing and community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Additional funding for regional centers so they can expand services for persons with autism for vocational training. Currently, there are persons who do not qualify for regional center services, but who are not able to gain or maintain employment due to their disability. This is going to be a tsunami of problems for the U.S. as the children and young adults with autism finish high school and there is nothing for them! Supportive housing targeted to autism is a also a must. 2) We need community supports for adolescents and young adults with autism who are not yet ready to be alone/independent or maintain employment - such as after school programs and job training tailored to persons with moderate-high functioning autism. What is happening to persons with autism in their 20's and 30's as their parents (who are largely supporting them) die? Are they ending up institutionalized, homeless, hospitalized, or incarcerated?Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Grace Gengoux, Stanford University	Employment models for social enterprise. Community inclusion models for recreation and housingThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Mariah Hahn, Rensselaer Polytechnic Institute	What I see as a parent is that once may child is 21, mechanisms to provide therapy for continued growth largely disappear, and at that stage, we seem write these adults off and consign them in group living homes. Protections of individuals with special needs, in particular mechanisms for families to save for their adults with special needs to pay for their care after the parents pass away need to be strengthened. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy
Maranda, Houston Autism Resources & Support (HARS)	Quality of life (QOL), education, housing, and vocational training. Higher QOL is achieved through effective early intervention (EI), when a parent does not have access to this, QOL suffers greatly. Education in the public setting is nothing more than high-paid childcare for many autistic children. There is a beautiful bright light in the area of housing and vocational training now. Many groups, individuals, and organizations are taking on this challenge and succeeding. I think more research that highlights the effectiveness of specific EIs, education, housing, and vocational is always needed.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Anonymous	Need to have more residences, more support for parents and caregiversThemes Addressed: Improve the quality, accessibility of housing options; Need assistance for adults with autism and their families in navigating available adult services
Heather Rocha	Adult services Life spanThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Heidi Stewart	Employment and community integration are a high priorityThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	families need help with residential and vocational services. Residential programs are hurting because of the low wages given to those who work in those facilities. There are agencies that want to grow and manage residential services but there is not enough funding to support it, primarily due to the low wages assigned to the caregivers. Hard to recruit.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Holly	You are aware that most of these questions are repeating, but worded slightly different. This one is simple, there is none in any of these areas. There is no quality of life, most kids on the spectrum no matter what their level is sit on a check, they may get a job but it is low paying, and a job not a career. There is nothing for age trasitioning or adult services because the waiting list are over 6 years long, and the HFA don't qualfiy for any of this, except maybe in school but they are a joke. Education is a waste, most of these kids are behind their classmates by years, and with the new standardized testing they won't get a HS diploma they will get a diploma of attendance which means they are locked out of the military, trade schools, and college. Also don't qualify for any of the management levels programs at fast food, or tmobile, verizon, or companies that have separate training programs from in house. They are not intergrated into the community, the section 8 vouchers program are closed, the ABLE accounts are stalled in the planning section, it cost almost 8000 to set up a special needs trust and they don't cover housing or everyday living expenses. Most end up on the streets, or victims of con artist. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Irena Koshuk	The most important gaps: Housing; Adult services; Quality of life across the lifespan. Even people on Asperger syndrome (most of them) need a lot of support in their daily life. Many of them cannot live independently. They need: 1} daily living support of different levels (depending on the functioning level of the individual) 2} specially organized employment, which would consider their particular strong and weak sides. Strong sides include detail orientation, special type of memory, etc. Weak sides include vulnerability, high (and often very high) anxiety, difficulty to adjust to typical norms of behavioral patterns, feeling of inferiority, compared to typical individuals. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Jacqueline M Ward	Transition and adult,services including education and vocational experience Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Janet Terrero	Autistic adults will need communities and support. We can not just not support and help them. How humane is that? Definitely need workforce development which goes back to giving them a decent education which includes proper supports that foster success.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services. Supports and services for adults with autism, and their aging parents. Autism is a lifelong disability and many severely affected individuals present with same intensity of need once they "age out" of current infrastructure of supports provided by public schools and mandated by IDEA. Current funding sources for adults with autism are not mandated, and they often do not provide for supports beyond custodial care. They should include funding for behavioral and vocational development. I feel strongly that a shift on mindset needs to happen to prioritize supports and services to adolescents and adults with autism. The focus of this plan and much of the research, delivery and policy priorities appear to be on children with autism. Children with autism grow into adults with autism, and many still present with same severity of communication and learning challenges. Autism is developmental disability i.e.,lifelong. A critical need in this area is for service access and utilization for ADULTS with autism. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	quality of life across lifespan, adult services: all of the aboveThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	Adult education and vocational training are very important! Individuals with autism can have average lifespans, and should have access to healthcare, education, housing, and the community throughout their life. In addition, services for adults who are no longer eligible for support through the public school system should be easily accessible to families. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Individuals with ASD's can have meaningful and productive lives however they need educational, vocational and adaptive training to be productive members of our society. Interest, career and strength-based inventories need to be conducted to determine what are the areas that individuals with ASD individually would most benefit from. Because ASD is a spectrum disorder and functioning amongst individuals varies it is critical that the needs of each individual with ASD should be considered and evaluated to determine the most beneficial interventions and resources needed for that individual. Finally transition services and supports within the community need to be identified to help individuals with ASD to be successful contributors to their communities and overall society. I believe research need to be conducted to determine what areas of employment are individuals with ASD's most prevalent in and what are specific areas and options that need to be explored more for individuals with ASD in terms of employment and career development. I believe it is essential for stakeholders, educators, policymakers, healthcare providers and families of individuals with ASD's to collaborate and work together to strengthen the support network for individuals living with ASD's.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Jill Longenecker	adult services - housing adult services - employment quality of life across the lifespan adult services - educationThemes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Quality of life and financial planning are extremely important. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Jennifer Warren	Please put more focus on the lower functioning individual with autism. Please, please understand that they may not show improvements so the current determination of funding being "outcome measures" is a nightmare for them and their families. They must be treated with the same respect as those who speak, read, write and are able to live more mainstreamed lives. They continue to have needs for the rest of their lives and deserve to live in safe and nurturing environments. Staying with their families and/or in homes with well-trained, patient, loving caregivers is what we all want. Please do not take away options for those whose families can no longer care for them. Funding is dwindling for group homes and going to more individual family living who often have no concept of the issues of autism. Please demand serious training and continued oversight throughout for the lifespan of our loved ones. Themes Addressed: Improve the quality, accessibility of housing options; Services and research should take into account the perspective and choices of adults and their families/caregivers
Anonymous	- need to establish supported safe sustainable integrated and inclusive living communities for people with ASD. - need life skill development in schools and beyondThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous	employment, housing, community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Julie Tracy, Julie+Michael Tracy Family Foundation/Urban Autism Solutions	Our focus is on the needs of the young adult population and implementation of programming in the housing, vocational and social network domains. I don't believe we need additional data to determine the crises that currently exists in these areas for most families. I would like to see specific supports to measure outcomes for successful programs like ours so that we can replicate our work and build capacity. I think in many cases we already know what works and what does not work to best serve this population and that some would make this more complicated than it needs to be before implementing solutions. Funding is critical to the success of programming and the lack there of produces profoundly challenging consequences for families living with autism today. When we offer choice in housing and community supports that are tailored to the unique needs of individuals we serve, we will be successful. We see hundreds of employable and ready-to-engage youth graduate from transition programs in the Chicago Public Schools and begin the phase of life best described by Dr. Paul Shattuck as "floundering." They are disengaged and unable to make it over the considerable hurdles that the state's Voc rehab department throws in their way. It takes time, money, and considerable savvy to clear these obstacles and most families simply cannot manage this.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
John Welch	Transition and adult services EmploymentThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Karen Zastrow, Parent	We need employers to identify the abilities of autistic children and offer jobs for them. We need more educational offerings for adults after age 26. More group homes for individuals with autism as the population ages; not nursing homes. How will we be able to financially support the aging population of autistic children/adults. This is a worry of my; what happens after I am gone? Work sites, employers willing to give autistic children a chance to get into the work force. However there should be education/training provided to support employers hiring autistic adults.Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kathi Tornabene	I don't think there has been enough time spent on what to do when these children reach adulthood. There needs to be services in place, education, job opportunities, housing, guardians for finances. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Ken	Corporations need to be held accountable for breaking ADA laws. ADA accommodations should be honored and accessible without cost to the person with autism. Adult diagnosis by trained psychologist in every county is needed. More jobs needed for autistic people, and education for employers who don't get it. As an adult, I have no future. Any clinic that can diagnose me is over an hour away and is in a very congested urban area and they want 5 hours of my time and $1,200 of my cash out of pocket before my deductible kicks in. I am just a profit making opportunity for them. The best cure is work accommodations through the ADA that allow me to get more sleep and reduce my stress. That improves my autism significantly. I am seeing no help from organizations such as Autism Speaks and IACC, adults are not a concern to these organizations. If you are an adult with Autism, you must change the world, the institution will not do it for you. Psychologist should be trained in every county to offer inexpensive diagnosis and non-drug treatments. Psychiatrist need to be significantly regulated in their delivery of unneeded medications that do not solve any problems, except the ability of the psychiatrist and the pharmaceutical companies to make huge amounts of profit in unethical ways. Board member psychiatrist are simply trying to control the industry and make as much money as humanly possible completely ignoring ethics. Depression related drugs that psychiatrist prescribe are responsible for the diabetes epidemic the U.S. is experiencing. Corporations abuse autistic people, there needs to be protections. Government organizations need to be on the offensive of Government regulations to strengthen current regulations.Themes Addressed: Improve access to diagnosis for adolescents and adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Health and quality of life, vocational training, financial planning, adult services.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Korri Ward, Northern Nevada Autism Network	Adults need access to habilitative care, which may include Applied Behavioral Analysis. If needed, Vocational Rehabilitation must provide ABA, BCBA's and RBT's through job coaching. The current job coaching training and planning is insufficient to meet the needs of most adults with autism. Adults highly impacted by autism need access to ABA treatment overseen by a BCBA and carried out by RBT's to ensure that they maintain appropriate behaviors that permit them to stay in their community or parent's house. Thank you of the ABLE accounts. Adults with autism who need supports must have access to their supports from a talented and competent workforce. Vocational Rehabilitation needs to provide ABA. Waiver programs for our most fragile adults with autism that have aggression must fund supported living assistance paraprofessionals at a rate that will maintain a competent and highly trained workforce capable of developing and implement behavior plans. (In Nevada billable rate of $19.33 fails to provide this workforce.) Adult care should be comparable to services provided to children. Changes in infrastructure should include development of adult service programs that allow adults with autism to access ABA, BCBA's, and RBT's for habilitative treatment as needed to remain in the community, maintain employment, or to live with their family. Autism is lifelong and the treatment should be available lifelong, if needed. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	All of the topics listed in the above question. End of life issues and discussions also need to take place. Service and comfort animals greatly enhance the lives of those on the spectrum.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	A variety of services are needed for adults with autism including vocational training, employment opportunities especially for the low functioning non-verbal adult with autism, group homes for low functioning autistic adults whose parents are aging or whose parents have died, and opportunities for pursuing leisure activities with other persons with autism. One important gap is the strong association between low functioning autism, nonverbal behavior and extreme aggression in male adults with autism. There is a need to research this association and to research effective treatment for extreme forms of aggression. The latter ranges from physical attacks, scratching, biting and hitting others including caregivers, to destruction of property, like smashing paintings, light bulbs, throwing away carvings, smashing plastic cups and glass plates and throwing objects like books, bottles, food dishes at caregivers with the intention to hurt. There is also a need to research how care givers cope with the extreme stress, humiliation, fear and terror evoked by unpredictable acts of aggression from highly volatile adult autistics who are taller, younger and stronger than the aging caregivers are. The firm, no-nonsense approach of teachers stops the aggression at school but leads to even more severe aggression and acting-out behavior at home. Another area of research is employment possibilities for adult, nonverbal, low IQ, physically robust males with autism. The most important priorities are to 1. train caregivers to cope with extreme aggression in adult males with autism, before the caregivers are killed or the autistic adults are sent to a special home for autistic persons or to the insane asylum; 2. establish sheltered workshops or day care centers for adults with autism who are unable to transition from school to the work place; Help developing countries to provide a wider range of services for adults with autism. The children have special schools but little or nothing exists for adults with autism after they have left school.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	We are currently working our transitioning our teen to adulthood. Our high school has been diligent in helping our daughter find successful programs. We do need more employment options for ASD adults. Many are able to work, but need a helpful employer. No ASD adult should be home because they can't find employment or they reached a certain age in the program that they have. We need continued support for them. Many will need caseworkers for they're entire lives. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Leslie Zevnik	Transition and adult services.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
LeTreese Jones, The A.F.F.E.C.T Institute	Transitioning should be addressed prior to graduation, specifically, the conversation should begin at the middle school level. Financial planning, vocational training and community integration models are priority. There should not be so many hoops, penalties and barriers for families that wish to ensure their loved ones are afforded health, housing and the best quality of life once a caregiver has passed away. Affordable services and regulations are necessary in this regard. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Laurie	The lifespan of an adult with autism isn't limited. With healthy behaviors they will also be able to live 70 years or so. With early intervention, all children with autism can learn to function in society and take care of themselves. In my area, they are building a College for children with Autism. There is a vocational training school in my neighborhood and also a restaurant that has servers that are Autistic. As the parents and care providers, we need to make sure that we are setting them up to be successful. Community housing that is clean and affordable. Offering the young adult some independence but also some limited supervision as well. There has to be jobs available and skills to be taught,we need to provide them with the tools necessary to be productive members of society.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Anonymous	Aging, transition, housing, financial planning, community integration, vocational training and employment. Life skills training is absolutely necessary in high school and often gets the backseat while the focus is on test-taking. This leads to unprepared adults who have difficulty entering the workforce and need to be taught basic soft skills. Hard skills are also lacking by the time an individual graduates high school or college. Work training programs are beneficial, as well as strong incentives for employers to hire people with disabilities.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Linda Bullock	The future is scary. I'm a grandparent. When I die, who will take care of my granddaughter? Who will fund her care? Will she have appropriate housing? How do I find a doctor for her who is experienced in dealing with adults who have ASD? How is the United States of America going to treat these 1 in 68 on the spectrum in the next ten or twenty years? Many of these kids are not exactly disabled - they are just different. The system we have now does not prepare them for adult life. So it is left up to the parents. And after 18 or 21 years of dealing with them, we're tired. We need help. As a nation, we are least prepared for what is going to happen as all these kids who have received early intervention reach high school and young adulthood. We are not prepared for such a huge influx of non-assimilated, dependent adults. Most parents don't have a clue what is supposed to be done for their teenage student and the schools are not doing the job. Parents need to be educated about the full life span of those on the spectrum and we need to be looking at more comprehensive post-secondary school interventions. Most of those on the spectrum need many more years of preparation before they can move on to independence, if they can at all. A comprehensive, coordinated system is needed for young adults on the spectrum. As a parent, when my child graduates from school, what comes next? She is still totally independent on me, not prepared to live on her own, not capable of working without assistance. And this is a very bright, high functioning person. While there are bits and pieces of help available, each is its own entity, which makes it very difficult for the parent to find the right resource. Research shows that additional education in life skills and work related skills is necessary for all on the spectrum. Even attending college does not prepare most ASD students for independent living and working. We parents need help! We need ASD schools and ASD communities. We need employers willing to work with quirky but bright employees. We don't want our child to live off the government for the rest of their life. But we need help finding resources and funding education. It is a never ending job. We love our kids, but we need help launching them into adulthood.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Loreen Booker Brown, Career Veteran in the field o ASD, AND DD populations	Again all of the above are in short supply for these individuals. Many are on waiting list for years. They have no prospect for employment because the school system have done a very poor job in vocational training. There should be mandatory payment for students who perform work at jobs. Every year individuals and groups of students go out on job-sites. They perform real work that paid employees normally do. However, the companies give them nothing for their work i.e. Walmart, Kroger's, Publix, and Papa John's Pizza, etc. This situation is found in Georgia but I suspect it is a national concern. Regarding dental concerns require approval from Medicaid once individuals reach age 22 years. The are no longer qualify for routine dental care. They can be examined but the cost is incurred by the ASD/DD individual or their parents whom may not be able to afford services. There are no opportunities in Georgia for HUD aftercare services so the population is limited in living independently. The school system are responsible for 18 academic school years. Much more could be accomplished with professional and knowledgeable watchdogs who also provide professional expertise. Workforce development and placement is a profound deficit with the ASD/DD population... Demand that work-study participants a paid on a sliding scale.Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
LorRainne Jones, Kid Pro Therapy Services Inc	Vocational training and community integration are critical. Early on we have to identify in young children with ASD skill sets and interests and then develop educational and later vocational training programs that support personalized skill acquisition that increases the likelihood of employment and successful community integration. Then we have to let skills sets and interests drive the content of education program. That is the kind of individualized instruction that leads to employment and successful and meaningful community integration. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lindsay Sherwood	There need to be specific assisted living/inpatient services for those affected by ASD throughout the lifespan. There are many children that we see who are going to need to be taken care of for the rest of their lives. Parents need places to be able to take their children when they want to go on vacation (most of our children we work with could not handle this) or when they need an evening away. Working with individuals with ASD is different than other disorders, and many places are not trained to take care of these individuals. Some children/adolescents will need to live in a long-term care facility with professionals who are familiar with ASD. Themes Addressed: Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD
Lucia Rafala, Parent Of child with ASD	I don't know what will happen to my son when I am gone. Its difficult to get a consistent social worker/program. wait lists are horrendous. and I am afraid with budget cuts, high functioning ASD will not get anything in the future. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
Anonymous	all of the above is available in Pennsylvania, but MORE housing, vocational training is needed. we need more workers to help our young adults. financial planning is right up there with the most important issue. we in Pa do not have any financial advocates, financial planners that we parents need to help us in securing our young adults future from being taken advantage of financially when we are gone. Please help us in all of the above, parents will be forever grateful. after high school, the Asperger/autistic is quite forgotten. our young adult is still seeking employment after 5 years, even after using OVR and job coaching. In Pennsylvania, we have a wonderful, but overworked and understaffed support network for adult autistics. We, 50 something parents, are very concerned about what is going to happen to our child when we are gone. Social interaction with the public, becoming a working member of society is crucial my young adult. Isolation, depression is a big problem with our young adults. transportation for those unable to drive, modern, safe apartments, for them when the parents are deceased, employment not affecting their SSI income. I think collaboration between employers and OVR type employment assistance programs is quite possible in 2016. Time to put more dollars into helping the growing adult ASD/autistics support and services. thank you for your time and consideration.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Kathy	I've heard of the "cliff" once a person with autism turns 22 where services are scarce and hard to find. My son will face that cliff in just a few years. It is incredibly scary. He is now in a group home due to unfortunate aggressive behaviors, and it is so scary because he cannot say when bad things happen. Group homes need to have an ombudsman and someone checking in on them constantly. I have found that my son has better care in the group home because I see him at least twice a week. But that group home was lazy and things were lax before my son went there because no one was regularly paying attention to what was going on. Folks in group homes and adults in any home need to have activities and socialization and community integration. We need more opportunities for adults with autism and more information on what is out there.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions
Sally Kirk	Training an support for caregivers: both families and later, staff, who support these individuals. Quality of life across the lifespan. Lack of life skills education available for verbal-fluent autistic people. Being told to "choose" between academic education and life skills education. Schools have no capacities developed for teaching life skills to college-able ASD people.Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marty	Lack of affordable, accessible, safe community living and community supports. 10. Lack of planning for when the population that cannot live on their own, hold down a full time job, etc. There is going to an influx of people in this catagory.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions
Melissa Sigel	Adult services for person with ASD are very poor - or more accurately, they are virtually non-existent. Many children with autism could grow up to be adults who could potentially go to college and get fulfilling jobs - if they were provided with appropriate care early on and throughout the lifespan. However, the supports required to get a person to that point are insufficient - and the supports for adults to be able to be successful at college and in a job are lacking. There are a couple of exceptions in the state of Arkansas - like the Autism Support Program at University of Arkansas - but this program is very new and has a lot of opportunity to grow. More programs like this need to be developed - both at traditional universities and vocational training programs.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Michael Brackett, Easter Seals	Health/Quality of life, aging, TRANSITION is a HUGE factor, education, vocational training, employment, and housing. Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services, especially employment and housingThemes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Special needs do not go away with age. Needs are present throughout the lifetime. Supports need to be in place for all aspects of healthy living - room, board, leisure, medical, relationships, finances, faith based opportunities, work opportunities. Employment is often key to a persons well being, financially and psychologically. Continued strengthening of ways to share and disseminate resources and support.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	More job training, housing options, reliable transportation options, etc. Thinking of what will happen after our son ages out at 22 is frightening. Short of starting our own business, we do not feel confident that there will be adequate employment options for him. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Health and Quality of Life Across the Lifespan, employment, community integration. 4. Education of the public, particularly employers about the benefits of having individuals with autism as employees 5. Life-span research, adults with ASD; functioning and life-time needsThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marilyn Arons, Melody Arons Center of Applied Preschool Research & Education	Independent living/support and employment become the ultimate issues which we now face as a nation. Currently, there are no services more millions of adults with autism who live with their parents who are in their 80s and 90s. No remedy for this problem is in sight.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition, vocational training, employment, housing, financial planning, community integration Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michele Epps	It is important to find a way to continue transition services through adulthood. Services cannot end at 21. Mentors or coaches who were involved in transition are needed to continue assistance with finding job training or education, housing, transportation and social connections in the community. With proper guidance and supports these adults can be independent, productive members of the community. Special attention needs to be on preparing them for a career/job that pays a living wage. On the job training and apprenticeships are needed as well as affordable specialized college classes and programs. In addition to this access to safe affordable housing and accessible transportation are a priority. Research in workforce development and training along with outreach to local businesses and manufacturers would help find possible career paths based on ability and interest. Information about job requirements and steps that need to be taken should be collected and shared with schools and then job coaches and other local job services. Based on this information, training and classes should be organized to train prospective future employees in the target careers/jobs. All service organizations should have access to this information. Currently there are very few accessible/affordable training programs/classes available to this population in all parts of the country.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michele Thompson, Nebo School District	I see individuals with ASD from PreK to Post High as I work as an autism specialist in a public school system. I also work with families of individuals with ASD. We, as an education system, do our best to prepare children and families to transition from the public education system to adulthood. There are limited housing options and community integration for employment. Our transition teachers spend many hours knocking on the doors of businesses to ask for potential work placements for students who are "differently-abled". The wait list for DSPD and other social services is sometimes many years long. This is unacceptable. More effective management of social services as well as increased education and incentives for big businesses to employ those individuals who are employable, are potential solutions. In order to include all members of society in our communities, we need fewer barriers to employment and independent living as children with ASD grow into adulthood.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Mindy James	Adults with ASD have children with ASD. We often make the best advocates for our children because we understand where they are, since we have been there ourselves. We also make the best researchers and experts in the field because of this background as well as the specific skill sets that are ASD. Programs aimed to help adolescents with ASD on college campuses and in high schools need to be properly assessed and that knowledge needs to be utilized to create scientifically validated programs to help individuals with ASD to adapt in their schools, community, or workplace to be able to showcase their skills and learn how to appropriately interact.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Missy Wilson, Easterseals	quality of life across the lifespan vocational training employment housing community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Brynda, Parent of an autistic child	Adult services, housing, college when 1 in 88 is affected more needs to be done. Services for adults, services for kids over 5 yrs old, employment accommodations, therapy for puberty.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michael Beauregard, Father of son with Autism	Something that seems to need to be addressed is definitely the access to care/assistance for those with ASD once they are an adult. Even though it can be difficult for some to get assistance as a child, it seems almost impossible to get assistance for that person when they become an adult. I consider workforce development to be extremely important, and something that absolutely needs more attention. As stated previously about assistance being harder to come by for adults with ASD, there needs to be more of an effort put into helping/training those with ASD to find employment, and working with employers to help them understand he specific needs of those with ASD.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michael Notaro, University of Wisconsin-Madison	I want to know that after I die, my son will be taken care of and given opportunities to work or do art or travel, whatever if he is interested in it. I would like an individual person assigned to my son that would see to choices for his care, etc. after I am gone. Relatives and family are rarely able to do this adequately. Opportunities for continuing education and working with behavioral issues to ensure that my son has a better fit with the community around him. Right now the state only requires 3 years of ABA therapy to be covered by insurance, private or state. This kind of therapy should be readily available and financially accessible throughout the life of an autistic person.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Christine Reel Brander	quality of life across Life-span. After the age of 21, supports and services disappear. Housing options are not available. There is a big dependency on families for accessing supports for community living. Housing for people who need 24 hour supervision Support services for people with co-morbid mental health diagnoses Appropriate medical and Nursing services to support people living in the communityThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
JoAnna Bryant, Parent	Again, training, training, training of staff and reimbursement rate to draw in the appropriate staffing. Workforce development for the ENTIRE SPECTRUM not just those who are considered "high functioning".Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Nathaniel Geyer, MS	As found but the Autism Census in Pennsylvania the future does not look bright a large number of people have chronic digestive problems, such as stomach cancer proctile collitus, and other digestive issues. Unfortunately treatment is limited due to unemployment, governmental-enforced poverty through Medicaid, poor transportation, housing issues, debt, and a single relationship, leading to a poor quality of life. I am a strong believer of early intervention programs that depending on the child can improve quality of life as adults on the spectrum. It is important to realize that persons with ASDs are a growing minority population that does not suddenly gets cured after age 18 but rather face an uncertain future. I chose to view my diagnosis as a gift and not a curse, and have conditioned myself to think positively and to choose hope over grief. However, I know many people on the spectrum that need to be reassured that everything will be okay. I am hoping that this intervention provides hope for individuals diagnosed with an ASD. 1. Housing-many ASDs currently live with relatives and experience difficulty in living independently. 2. Transportation-many ASDs are unable to get drivers licenses and rely on other for transportation. 3. Employment-90% of adults with ASDs are unemployed or underemployed. 4. Relationships-many ASDs are single and are not in a dating relationship". Treatment for autism typically stops at age 18 and does not continue in adults unless they have a job which is unfortunate considering there is a 90% unemployment rate.Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Nichole	Vocational training should begin as soon as the child is diagnosed in the form of social skills training in group settings working through age-appropriate social interactions. Some high schools have "transition" courses that allow students to work into Voc Rehab and that should be expanded. Along with the medical home, hospitals should have representatives that can assist ASD adults with their health care and ensure understanding of procedures. Adult services should be covered the same as when they were minors, there should be zero lapse in coverage and services. Housing needs an improvement: some need group homes, some need working and living environments like a ranch, some need apartment living with group care styled help, some need roommates with attendant care, some can be completely independent. More options are needed. At the moment, it's group homes or living at home. Financial planning should be in hand with vocational rehabilitation or under habilitation services. Community integration, education, employment will need to be addressed as a community and a shift of thinking. That's where educating the doctors, teachers, and families comes in to play. More people educated about ASD downfalls and upsides will decrease apprehensiveness of the community. I don't know specifics here, but I want to encourage more research regarding employment, education, and living arrangements for adults. I'm not sure what surveillance research would entail. Begin following the lives of children when they enter high school. Pay states and local governments to do get the scientists/researchers in the communities to begin the work. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	All of the topics listed are of great concern as the student transitions into higher education or additional vocational training. As in high school, transition programs should be as prominent and effective for housing, vocational training and university/ college levels. All students deserve to be just as successful as any other student. I know FIU has a great transition program, but discontinues due to the age limit for ESE services. Strengthening workforce development and collaboration. Thus goes back to educating employers (the community) about the strengths of hiring those with ASD. Characteristics such as dependability, consistency and accuracy.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
nancy sajeski	Need more services for adults on the spectrum. Very little pre-vocational programs available that specifically addresses the challenges that face those on the spectrum when it comes to jobs. Need appropriate pre-vocational training opportunities for adults on the spectrum. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Susan H.	If you fail to break through a persons sensory, awareness and emotional overloads than the person will probably need life long help. Thats great. But the remainder. Are literally tossed aside and forgotten. In Texas, there is nothing, and perhaps a half dozen therapist scattered across the state that help adults with asd. Finding help 4 asd/asd impossibleThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD
Anonymous	Stable housing for adults with ASD as their parents become elderly and can no longer take care of them. If we don't prepare for this, we will have a lot of people being left behind. There is a great need for more services for people with ASD. Much of the population is still young but as they get older and their parents become elderly there will be a great crisis for supportive housing and services for such adult individuals. Direct Support Professionals do not get paid enough to care for these individuals and thus there is great risk that agencies will employ staff who is not qualified or will not care about their charges. The most important need for anyone with ASD is after they leave school. These supports are sorely lacking.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD
Anonymous	health and quality of life across the lifespan, vocational training, community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	The wave of neurologically and substance use affected young adults is coming. Prepare and then get on with prevention. Look for the cause. it is toxins and genetic vulnerability. What may have been true for vaccine safety 30 years ago is no longer . we need to keep looking at the interaction of the environment including vaccines and the epigenetics is we are to halt this epidemic. Where and how are we to care for the million plus autism and ASD kids when they are handicapped adults? ADHD / anxiety / depression results in self medication = addiction and dependence ... hence the growing epidemic of drug and alcohol abuse.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Pat McCullough	More training for Special Ed counselors in school to get the students on the right track for success, be it college, vocational training or jobs. My son worked with BestBuddies organization to get a job, but there are so many more that are capable but don't get the opportunity. My 29 yr old son is driving and I would like better coordination with the DMV and police department. There should be a remark on his driver's license or State provided ID that he is autistic and should be handled with more patience. If a police officer does a license plate or driver's license check, they should immediately be able to see the person's disabilities on their screen and function accordingly. I fear for my son always driving and possibly being stopped and getting anxious and very nervous. I feel after high school there is less for autistic young and older adults to engage in. More programs are needed for the high functioning young and older adults to use and not just rely on the local Regional CentersThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Peter W. Allen	Adult services including Education, Vocational Training, Employment, Housing, and Community integration.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Patty Hooper	Employment and vocational training, independent living, housing, community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Pamela Oguagha, Parent of young adult with autism	This is a BIG one. Its where we are today. Although my daughter is on a community waiver (that I FOUGHT very hard for), and I am actively involved, there are still gaps in adult services, etc., for her. It's surreal what we are living through. I again reached out to my community. Although I live in Laurel, MD, I go as far as Aberdeen, Baltimore and VA, and DC to make sure that I am finding all that can assist my child. And I share what I find. My daughter wants to work in childcare (we have worked on this goal for the past 5 yrs. She even did an internship her last 2yrs of high school. DORS wont pay for it, so I have to find a way to make this happen. It is Not an easy road, but because I am an advocate, a parent, I will continue to fight to make sure that my daughter and others like her have a chance at a full, progressive, life. Because my daughter didnt graduate with a diploma (my daughter graduated with a certificate of completion) she and others like her in this state (MD) cannot apply for FASFA. this leaves the burden on the family especially when the only vocational training DORS offers is NOT what the youth wants to do. Yes, workforce development is lacking!!! I found an organization Jewish Community Services who helped me find opportunities for my daughter where she can continue to work in child care (paid/unpaid). This will help her with experience and also help me pay for her classes. Once she recieves her vocational certificate at a nearby community college, she will be licensed and able to work full time. More help is needed for our loved ones to live full productive lives. Kinda like we "typical" individuals are living right now. Everyone deserves this chance. Everyone.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
JLG	Financial planning etc., yes that's an issue! Adult autistics like myself have had difficulty finding partners who aren't trying to "fix" us. We end up single without someone to help with finances. Administrative procedures are typically illogical and fall far from my cognitive wheelhouse. I have always needed assistance with that. If not for the help of several good friends I would have been unable to apply for graduate school simply because of the administrative paperwork. Years earlier, my 8-year-old-daughter filled out my community college application for me as I answered her questions verbally. As I get older, people have a more difficult time squaring my age and intelligence with my inability to file my taxes or figure out my polling place, and help becomes more difficult to find. "Health Plans" are a nightmare. I've amassed about 40K in medical debt this past 3 years after being rear-ended in 2013 and not being able to understand my health coverage. Despite dozens of calls to my insurance company, affiliated hospital and doctors groups,and a local patient advocacy center, no one could point me to someone who could help me use my own insurance properly, including my auto-insurance benefits. My self-financed medical expenses are sitting on multiple credit cards right now, while I continue to pay for insurance. Just writing this makes me want to cry so I'll stop. Adult services for those of us born before there were services. We've been banging around in this world trying our best while it seems like the rest of the world believes autism is a recent phenomenon. It's not. The autistic adults I that I know are some of the most intelligent and yet underemployed, underutilized human beings. In this society you can be autistic and Mensa qualified (I am) and not be able to land a job because of an inability to complete the administrative paperwork associated with the hiring process. Workforce development to include the Asperger end of the spectrum - we are frequently expected to sink-or-swim since we're so "high-functioning." Yet a job means administrative paperwork and procedures and we are not at all "high-functioning" in that area.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Tamara Ratley, Principal at CEC-North	Their quality of life is a huge issue. We went too far on the pendulum again and removed the adult facilities that people NEED. I serve children who as adults could seriously physically harm someone and there is not a thing I can suggest to them. That's wrong. NO MONEY Although some community is open others are not and they have the right to be that way. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Aging and transition. health and safety issues affecting adults and community inclusion.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Robin A. Womack	I am the Mother of a 26 year old Son who is Autistic and in addition he also has a Traumatic Brain Injury. I also have a Brother and a First Cousin who are Autistic. I have been dealing with Autism since I was 10 years old when my Brother was first diagnosed...I'm now 52. The questioned that unnerved me at 10 yrs old and still frightens me now is what will be the quality of care for those on the Autism Spectrum as they age. If a cure is discovered that would be one of the greatest revelations...however until that time (I pray) serious preparation and funding must be directed towards the Adult Autistic Community. Consideration must be given to this populace. For those who do not live with their parents, family members or loved ones, safe clean humane and loving environments must be created and maintained. There are so many cuts in programming and funding. Many such special residences and facilities are closing and home care is being pushed. Home care is always the best option but when that is just not possible due to severe behavorial/ medical issues or there are no loved ones available to take on the responsibility what then? We all age so do they. Their Primary Caregivers will most likely pass away before they will. Who will care for them...who will care for my son? The safety and quality of their Adult lives will be determined by our preparedness. Please prepare......Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Robin Drury	Autism is a diagnosis that does not go away or have a decreased life expectancy, therefore, programs need to continue beyond school age. College programs should also be considered that lead to a degree versus a certificate.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Renee Portnell	This is where I am now, trying to find my daughter a job in community, VR trying to tell her what job they think is right. Excuse me, thought this was person center planning place??? Housing thats a waiting list of years, any way of shorting it down, yea right. Financial planning , yea right again because my child is very shy not due to her disablity, SSI deemed her unable to be financially fit so now I deal with her money. They wouldn't hear of lets meet a few times and she will open up to same person, told you shes shy. Can we do something for these guys?? Not fair.Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marisa Lawrence	adult services are lacking as well as equal opportunities for employmentThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition and adult services. We need to eliminate the drop off in services that young adults face. Parents shouldn't be expected to face this burden alone. For families that want their adult children at home there needs to be appropriate day programs especially for autism, respite services and well trained in home staff. For indivduals that need 24 hour care, there needs to be housing designed for their needs, not general group homes. Work opportunities and continued academic education beyond age 21Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Pamela Blankenship, Parent/Grandparent of children with ASD	My son with ASD is 42 years old and we are blessed to have him living in his own apartment (in a different city from us) with community-based supports (Waiver) That said, there continues to be a need for highly-trained and well-compensated staff who have ready access to current research-based interventions. There also needs to be easier acess to affordable and safe living arrangements. (The lack of affordable and safe housing is the main reason my son lives in a different city than me).Themes Addressed: Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD
Robin Havens, parent of someone with autism	Please see last response for some of the answer to this question. The lack of available housing puts a strain on families and individuals with autism. The current policy of keeping individuals at home with their families does them a disservice. Living in the family home is not a less restrictive environment for an individual with autism than a "group" home comprised of similarly aged adults who may share the same interests and can engage in activities together. Again the issue becomes one of isolation for the individual with higher behavioral needs and their family. Without the proper staff to assist the family, neither the individual or the family can engage with the community at large. There is a huge drop off is service delivery, availability and quality of service providers when people with autism age out of the school system. More outreach to employers and strengthening collaboration between employers and people with autism and their service providers would help to give people with autism more of an opportunity for employment. There needs to be more specialized supervision of people with autism in the workplace by trained service providers. Employers need to understand the potential for behavioral incidences and be able to cope with, and adapt to them. Job coaches need to be more prevalent throughout the term of the employment and not just at start up.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA	the overall failure of these individuals to integrate into their communities is 90% lack of social ability; 10% behaviors. Need good structured community support. need better transition at age 22 out of special education. these individuals crash and burn due to very poor and/or unrealistic transition plans. Need to support high functioning ASD who want to work/go to college or vocational training.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sherri Leyda, parent of two children with autism	I think that choice is crucial when it comes to housing. "Normal" people have the choice to live in planned communities, people with autism should be able to live in planned communities and farms if they choose. This way they can decide for themselves what level of outside community interaction they can handle while still having social interaction with their planned community members. This is crucial to their well being as the traditional model of group homes are not always appropriate. There must be a greater effort to find appropriate jobs for each individual and for them to have the support they need to navigate the complexity of workplace interactions.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	My son is 30 and has a full-time warehouse job nearby. He lives at home. His employment is partly in thanks to a private job coaching agency in the area, funded by the state Div of Rehab. He's a great worker with lots of energy. BUT he's a lousy interview. He would not have obtained a job without a job coach to accompany him in interviews to get that job. Regarding lifespan issues, I am concerned about changes in Medicare, and how they will affect those with disabilities. I am also concerned about the severe, nation-wide shortage of housing options for those with developmental disabilities. Does anyone really think these folks will die before their parents do?Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	The future looks dismal, especially as the numbers of affected individuals in need of housing and daily support increases. We need funds to enable more choices as to housing. Government funding shouldn't be less than what is necessary to ensure a safe comfortable home. The idea of funding that is less than what is needed works to the detriment of the community and service providers seeking to provide best in class services. You failed to mention adults here. How do we achieve community inclusion when the funding for same is inadequate and the cost of providing services is beyond the means of the overwhelming majority of families. We need policies and enforcement of policies that require sufficient public funding to ensure individuals with autism are able to find safe, affordable housing within their community. We need funding to put in place safeguards necessary to assess the services being provided to be sure that agencies are delivering in accordance with the service agreements and best practices. Adults need homes and jobs. How van encourage more volunteering? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I'm hoping more can be done for supportive services for those who could go on to college or training. Why can't we provide more supports to allow people to become fully integrated in their communities seamlessly? There's a new center in Rochester for adults--in 2016! Why did it take so long and why is it the only one in the nation? Seriously? Adults with ASD will need more understanding medical professionals to access in the future.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kim Mays , Individual	The main concern now that my daughter has reached age 21 is her hope to go to college or vocational school but cannot obtain a diploma based on the current regulations. She cannot pass a Ged placement so therefore is not accepted in programs available. These children need to feel that they can contribute to society, my daughter wants to work , she showed this by sending resumes along with baking cookies for managers. Their needs to be a change for continued education and life skills along with social clubs following cut off at age 22 of services. I as a parent with a daughter who is Asd would like to see more programs addressed for females specifically tweens and when they mature. Their needs to be more social aspects addressed, research and advise for females with autismThemes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
stanley scher, grandparent	Education is a life long process. If the necessary intervention strategies are started young with the goal of maximizing independent living as an adult then the latter stage should be an easier transition. It is extremely important to have individuals on the spectrum to feel that they are not only contributory members of society but that they feel a sense of individual fulfillment during their life span. Those who are not on the spectrum can better able meet life's challenges; the former need many more transitions to navigate adult living. Society puts too much emphasis on higher level of learning - not all individuals are college bound nor should that be the emphasis; rather, vocational opportunities through apprenticeships can be very rewarding and should be recognized a such. Aging parents want the best for adult children on the spectrum.They want o know that their children will be able to function in society as contributing adults and have a full life to the best of their capacity. Housing: government run institutions are a disaster. a voucher system would encourage private enterprise to create affordable housing while considering vocational placement. Competition will stimulate better practicing facilities. By focusing on the individual and not the diagnosis, society will better serve all individuals. We should look at best practices across countries. Israel has identified individuals on the spectrum who have a unique ability to perceive blips on a radar screen that other can't do. Such individuals appear to be particularly good at spotting irregularities in mammograms that trained technicians don't identify. Often institutions are foremost interesting in running efficiently and the individual can be lost. Providing a steady pablum of repetitive tasks can be very unrewarding. Priority has to be placed on the individual and not only on the institution.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Anonymous	The most important thing is when a person with autism graduates high school, the are no supports to help teach him or direct him to a more independent life. I have 24 year old who watches tV and plays video games all day because he cannot drive, work or have friends. I guess he will just die, when his father and I are gone because he can't take care of himself. Provide supports for adults with autism. Teach them life skills. Provide supported place for them to live and receive care.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Shelley Tzzorfas	It is only now that children-young adults are aging out of the school system and there is literal no place for them to go. Most are living at home with their parents and are unable to accomplish much. They need to become useful members of society. I believe they can be given places to create art, drawing painting, crafts in funded studios . Maybe 20 or so to a studio with supervision. There are a few places like this but the higher functioning young adults will not be together with the lower functioning ones. I believe that there is a grey area where the higher functioning ones-not high enough to finish college but high enough to give back to the community can grow and learn to become resourceful. Additionally a social meeting place-game room, pool, table tennis, therapy drop in center is needed. I have read that the ASD person's median lifespan is around age 50-60???Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Have comfortable housing available for individuals with ASD. Please have jobs ready for workforce-age individuals with ASD.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Susie Ross	There are few services available to young adults with ASD. Employment is scarce, and my 23 year old doesn't tell her employers she is ASD for fear of losing her job. She doesn't understand financial planning, and is pretty ostracized by people her age who don't understand her inability to handle social situations. She is trained in sales, but hates it because she thinks people are buying things they don't need. She is trained in customer service, but breaks down when customers call her names and yell at her. She is trained to wait tables, but customers yell at her, and it freezes her and makes her cry. So we have not been able to find an employment situation that pays her (and don't say Goodwill because they don't even try to pay their people minimum wage) enough so she can have a life when I am dead. There is no affordable housing in this country that isn't in a ghetto, or housing near transportation because she doesn't drive due to her ASD. The gaps here are the same as in the previous questions: there simply are not services available to help those with adult ASD on the higher end. ASD adults don't have access to anything to help them cope with things that are not routine. For example, I leave work every time my 23 year old has a mid-term or final because she has meltdowns about failing, and I come home to talk her down from the meltdown. Educators do not understand ASD and its spectrum of symptoms and behaviors, or even how it manifests differently in each cost. When I die, there is no one for her to live with, and she cannot make enough money to live on her own. Group homes are for those with more pressing needs, and she will fall through the cracks because, on the surface, she looks fine. And she is fine, short term. But when life presses in on her, she collapses entirely. I have watched it happen many times, and there are no affordable services available for her, short of an institution that may be cost effective but a poor choice for her. She can't even drive a car, and having crazy work hours in retail are stressful for her. She needs a better emotional support system, and a way to live in a small setting with people who understand ASD. That does not exist. She can't get health insurance she can afford, either. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Suzanne kollar, Parent	Lifespan, help at home Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Suz Swanson	Not enough services are being offered for adults. We are falling through the cracks. The transition age is particularly horrible. We need more services that will help us and make it more smooth. We need vocational training. But we need to find jobs for those of us who are higher functioning. We also need to find meaningful employment, which the majority of us do not have and will not have. Financial planning is essential for us, as we struggle to live on our own. WE need all the tools possible to help us succeed. Community integration is another issue. We need to stop being ostracized because of our social skills issues. We need to be included in many events. Most of us want friends (I don't and don't care for any). We also need to raise acceptance for those of us on the spectrum. There are hardly any services for adults on the spectrum. Once we age out, we are left to fend for ourselves. I am too high functioning for a DD center in the state, yet lack the services needed to succeed. I am falling through the cracks. It is pertinent that adults get services so we can live as independently as possible. There needs to be employment for us that is meaningful and job carving is essential to get us into jobs that suit our abilities.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Education , employment and housingThemes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Tina T	Transition into adulthood. Education service offerings. Housing options. Employment. Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	This is A real concern. Many parents hear what happened to our disabled adult once we pass. Affordable housing in safe communities, etc...Themes Addressed: Improve the quality, accessibility of housing options; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	I would love to see a huge increase in services/education/workforce training for people on the autism spectrum. What will happen to my son after I die completely terrifies me and keeps me awake at night. Knowing there were abundant community services for him in addition to what I can leave him would be amazing. Qualified, trustworthy caregivers are going to be a huge need especially for people from small families (like myself). Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Rebecca Burke	I think it would be helpful if the waivers were portable to other states. As parents age/die it might be wise to have a special needs adult move near their sibling or other family members who would be willing to help them. It is hard to get dental care for adults with severe autism . There are two problems. Many dentists will not take them and also in our state there is no coverage after 21. Only extractions are covered. I would like to see more training for attendants-or some type of training beyond cna. It is hard to find caregivers/attendants who are prepared to deal with an adult with severe autism. (biting, etc.) Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	transition and adult servicesThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	In the Mid-South Region adult services are pretty much nonexistent. If you happen to get into a program it does not cover everything needed. There is not enough housing for these individuals to live somewhat independently nor is there enough respite care for caregivers. Jobs are pretty much non existent in this area.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Victoria Ekstrand, University of North Carolina -- Chapel Hill	We need to respond to the expanding population of adults with ASD and housing and employment needs. This is already a crisis and will continue to grow. We need to prepare for the growing adult ASD population and prepare for housing and employment demands.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	When my son hit 18, he received very little services from the school on transitioning from high school to college. It is difficult to find a college that has a program in place in assisting an ASD young adult in college. Currently my son is waiting lists to assist him as an adult. As of today these lists are approximately 24 months long and there is no guarantee that there will be an opening for him. Job opportunities are very slim. I believe that further research is needed in workforce development. HR does not have the education needed to understand an ASD individual. We need to strengthen collaboration between the ASD individual and all sectors of the community.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	Comprehensive special education services for children with autism. Specialized education for children with autism for example smaller class sizes with specialized instruction while still allowing access to the path to common core/high school diploma rather than extended common core (high school certificate) like in North Carolina. A lot of the kids are very smart and are fully capable of graduating high school, they just need specialized instruction to access the curriculum instead of being held back. Extensive programs to assist young adults with autism to transition into the workforce. Cooperation with companies to facilitate mentored work groups/specialized internships for young adults with autism.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions
Kimberly Matkin	More training for families with older children with autism. More services in the community and more education on autism for the community.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Need assistance for adults with autism and their families in navigating available adult services
Teresa McCroskey, parent	The workforce planning is set up for them to be signed up by the time they are 8 so that they can be contacted by Department of rehab when they are 18. I also believe that there is a program set up to work with individuals that want to go to college and vocational training. I would love to see a program to set up individuals with appropriate housing, not rundown housing. Something that is quality housing, where they can have their pets if they want them. I also would like to see better financial planning set up and better community integration. I do not think that people with disabilities only can work at places like Good Will and fast food places. Many are very intelligent and I think that the Department of Rehabilitation needs to do a better job at placing people. I think that more family and people in the community that works with ASD individuals need to step up and fight for the rights of these individuals, because they are smart and can contribute to society if one would just see them for more than an disability.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Ongoing education and vocational training is needed, especially for those with ID. Just getting that first job should not end training opportunities. Housing with appropriate supports must be a priority. And housing for those with ASD may need to be different (although not necessarily separate) from those with other disabilities due to sensory issues, social anxieties and the greater desire/need for personal space. Lack of services is a problem in our area, especially for the young adults with ASD. Opportunities for social interactions are available but programs for further growth and development of life skills, work skills to get better jobs, and true social skills training are not plentiful. Having had delayed development in so many areas, now that they are ready for this type of training, it seems to be only for those still in high school.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Julie Wheatley	All of these topics are a priority. Health and quality of life is a definite relative weakness as well as community integration. Taking a van full of people to Walmart once a week is not community integration. Financial planning is available, but there is not much to do if there is no money to plan with.Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
gabriele lawrence	Transition from high school to young adulthood so being able to find appropriate jobs with supports versus shredding paper, cleaning and stocking shelves, etcc... set the bar higher by giving us more support in crucial teenage years. Lack of services for kids graduating high school to give them a meaningful life in an appropriate and least restrictive environment.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Xander McDonald, individual w/ autism, parent, sibling, advocate	We need to address gatekeeping efforts, on a state level. In my state of Arizona, 93% of autistics are not eligible for state services. I have Blue Cross / Blue Shield, but customer service has no information on providers for autistic adults so I can't get my needs met. We need to invest in all of these things listed in the question, but we need to do so in such a way that it doesn't discriminate against autistics who are low income, LGBTQ, minorities. Right now, there is a caste system within autism, and upper middle income families are gaming the system so that their adult children are taking resources intended for low-income disabled people. That needs to be stopped. Diversity, diversity, diversity. The biggest problem is lack of research & services for adults, especially those who are LGBTQ, female or a racial minority. There is so little for aging autistics. I am 50 and aging rapidly. Due to my many food & environmental allergies, I could not survive in an institutional or assistive living environment. We know about the school-to-prison pipeline, but how many of those young people were autistic - but missed out on diagnosis because of poverty and race? The missing piece is the lack of self advocacy. We've seen self advocacy be successful in Behavior Health, groups like NAMI. The more self-determination we teach individuals early on in life, the more that families can leverage natural supports, the more we can build autistic communities and peer support, the better the outcome through life. Those types of efforts are not getting funded though.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Services and research should take into account the perspective and choices of adults and their families/caregivers
Zoe Goodblanket, Grandparent	It is difficult to know with certainty what our child's quality of life will be without strong and consistent advocacy for his needs. What will his adult life be like? Will he be able to live independently? Will he become socially isolated and reclusive shunning contact with the neurotypical world that he understands literally and takes at face value? Employment opportunities, educational opportunities, advocacy and a collaboration of community resources can only help support the person with ASD.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Dr. Cheryl Mendelsohn, private practice and Cause Cafe	Addressed in previous question. However, to continue, adult services are crucial. Transition is now a huge focus on IEPs. But once the student graduates, there is nothing to follow that young adult to learn and/or maintain skills. I do know of attorneys that provide planning for parents regarding their ASD children, but it is difficult to provide peace of mind and guarantee services once parents can no longer care for their disabled offspring. For those on the spectrum who are low functioning the options are extremely limited. I do provide some training to help integrate ASD young adults into the work force, but once they leave my establishment they are on their own. Agencies who provide ongoing training are needed. As a professional who works with the disabled and their families I see services and opportunities disappear as ASD children become adults. Once they fall off the cliff (leave their school age years) families scramble for services and respite. I am involved with Cause Cafe (casuecafe.net) and provide training for young adults with ASD. However, I am self-trained and did much research on my own (still working on that) to develop the training program that is in place. We reach such a small group of people and it is not enough. For those with limited skills, the choices are even fewer. I am a supporter of inclusion, but training and maintenance need to be a BIG part of that. I know of some businesses who are willing to hire ASD employees. However, once the workers are on staff, there is no staff development to ensure the employees are treated fairly. We have some who report that previous colleagues took advantage of them, bullied them, and didn't pay them as promised. The current workforce needs to provide some oversight to ensure that this does not happen. Strengthening collaboration between local businesses and training programs would help to ensure safety and provide opportunity for employment.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anne Sawyer, Parent	1) Health and quality of life for the impaired and to all living with an individual with Autism. 2) Transition and adult services Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Mom of Two	Transition!, adult service delivery (low Medicaid reimbursement prevents agencies from hiring good DSPs), vocational training, and supports for college! I think ABLE accounts could be a huge step in the right direction. 3) Let's overhaul the delivery of long-term care services, like personal care and employment supports.They shouldn't be tied to Medicaid.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Andrew Gibbs	The strategic plan should address gaps in transition services based on family income, location, race, etc. Additionally, the plan should address the study of the effects of "aging out" of the educational system on quality of life and family well-being. The plan should lay the groundwork for data driven approaches to transition planning and job training, to find the best possible approach to services for diverse populations. Transition services for young adults who have "aged out" of the school system and the supports accessed through IDEA should be addressed consistently, and additional resources should be devoted to this population. Access to medicaid coverage beyond childhood should not be based on an arbitrary poverty-line level for wages, but should be based on realistic income-based assessment of the individual's ability to pay for health insurance. Gaps in service related to medicaid access, insurance coverage, mental health crisis care, "aging out," and job training should be key priorities for the IACC.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
, Parent	This should not be one category. It should be 3/4 of your questionnaire because it is by far the most important issue. I think the culture has approached autism and dd as if it were a disease to be cured instead of a natural byproduct of the propagation of the human species. We have decided as a society that it is barbarous to exclude, shun, harm or deny birth to people whose body or mind somehow differs from the norm. At the sametime we havedone little to adjust our culture to accommodate their tremendous need for supports. This is never more true than in adulthood. I think the focus should be on seamless transition fromschool to whatever is next, independence through technology and humansupports, safety, and living accommodations with dignity and maximum self-determination. And inclusin and fully paid employment in all walks of life, throughout adulthood. Then a dignified old age as well. The parents cannot do it all as is the norm in many states. And they will eventually die. The transition to adult programs snd especially jobs and housing should be driven not by the individual family but by the team tasked with care of that child. Too much is foisted on the parents'shoulders. Most people with asd or dd are capable of physical autonomy and they should be allowed to have it. Supports could be developed for them to call on as needed. The goal should be self-determination and autonomy, freedom of movement and choice, to the maximum extent possible. But also social inclusion. Transportation is an issue for many edpecially in large lumbering cities and rural areas. So userfriendly technology, apps and human based interventions should be more prevalent and better funded to avoid corruption. Safety is paramount but not to the extent of denying people with disabilities opportunity, self-determination and choice. They are not children. Gps devices such as those found in phones can be useful in the event of children wandering but could be abusedif used without an adult with disability's consent or as some type of implant. Housing is also a great need. Young adults with autism should have a place to go away from their parents, a place that they can call their own.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Alisha Gomes, Parent	You have to chose as an adult either services with assistance with a job or help with services for a place to live. As a parent how do you choose? I think that a ASD community ( a closed in apt complex) where they have jobs they rotate though to teach life skills like mowing lawns, cooking, budgeting, ect. They could use most of the social security of the ASD adult to help pay for the cost. Rent, food, expexpens and leave a small amount for them to have for themselfs to "budget" .Its living plus keeping them social. Why do all these services as a child for them to just stop as an adult.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous, Institute on Disability/UCED	I think this is a great document and I am glad to know there is recognition of need for research on adults, esp higher end of the spectrum. I personally, feel there is already a fair amount of journal articles on how to support adults on the moderate to low end of the spectrum. But what about those at the other end? Its extremely variable in every single individual, I'd love to see more evidence-based practices come out for adults. This report is quite lengthy and I didn't get a chance to read everything, but find it fascinating :) maybe you addressed this already. But what about those who are late diagnosed AFTER Early Supports & Services are NO longer in effect? Far too many children and adults are still fall between the cracks, we cannot rewind time to catch up. We must go forward with what we can find for support if anything. Our state (NH) just released a plan for ASD however it did not include adults only young adults. Because of the rules on where the grant $ came from. It's nice to know the federal plan is being inclusive of over age 26 population as children do grow-up! Perhaps in time, state plans around the country will be able to write another chapter to include older individuals as ASD is a chronic life-long condition. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults; Services and research should take into account the perspective and choices of adults and their families/caregivers
Angela Mai, MBA, Walden University Ph.D. Candidate, Public Policy and Administration	The future is dismal for adults on the spectrum. Those diagnosed get very little assistance transitioning, and often times no assistance at all. Adults on the spectrum typically have a very poor quality of life due to the extremely high unemployment rates for capable working age adult autistics (calculated at 83%). To fully understand why adult autistics are not being hired, research needs to be done to find out what those responsible for hiring believe that is influencing their decisions not to hire autistics. I am not waiting for a government agency to decide to do the study, I have begun such a study. I am conducting a study exploring what beliefs influence hiring agents' selection of qualified autistic candidates. Adults on the spectrum have extreme difficulty getting and holding jobs. While a great deal of research has been done by the supply-side (autistics and their advocates), almost none has been done from the demand-side (employers). Most people do not even realize how high the unemployment rate for autistics is (calculated at 83%) as the Bureau of Labor and Statistics (BLS) does not present an accurate accounting (18%; 2015). The Current Population Survey (CPS), the tool used by the BLS, only collects data in regards to deafness; blindness; difficulty remembering, concentrating, or making decisions; walking or climbing stairs; and dressing, bathing, and doing mundane errands alone. None of these are issues with which a qualified autistic candidate would typically be challenged; thus the BLS is likely to have completely skipped over this group. So with the inaccuracy of the BLS and the significant gap in demand-side research related to autistics and employment, there is a tremendous need to conduct further study. Therefore, as part of the fulfillment of my Ph.D., I have embarked on a demand-side study to begin to fill this huge gap in current literature. My current study seeks to survey hiring agents regarding their beliefs on autistics in the workplace. Feel free to contact me for more information regarding my calculations, claims, or research. Angela Mai [Email Address Redacted] [Phone Number Redacted] I feel the largest gap in public policy is the lack of policy addressing adult autistics. There is no policy directed toward diagnosis of adults, quality of life for adults, employment for adults, interventions for adults, assistance for adults, etc... There are adults who were diagnosed as children and adults who were never diagnosed (typically middle-aged and over) and can no longer be considered for diagnosis due to the age limitations for diagnosis. These individuals are often thought of as the dregs of society due to their idiosyncrasies related to their spectrum disorder. They have trouble getting and holding jobs and often suffer from a wide variety of psychiatric issues including depression and anxiety. Calculations indicate that there were approximately 3 million working age autistics in 2010 (probably many more considering the majority never get diagnosed). Calculations also show that over 2 million of those working age adult autistics were considered skilled and capable of competitive employment. Yet, 83% of them remain unemployed. After decades of seeing no progress in this area, I decided to conduct research related to this issue as part of my Public Policy Ph.D. fulfillment. I have begun researching what beliefs are influencing hiring agents in their selection of qualified autistic candidates. People do not know where to turn. Employers do not understand. I feel that the most important avenue in which to begin educating society is with employers. Finding ways to help autistics become gainfully employed would help society, help the economy, help the autistic, and thus be the most cost-effective method to begin education of society. Thus, I am doing research into the beliefs influencing hiring agents selection of qualified autistic candidates. We must pay more attention to adult autistics. We must be able to diagnose them at any age, not just children. We must be able to recognize their disability and assist them in improving their currently poor quality of life. It must start with a diagnosis as that is required for them to be able to get any help at all. Once diagnosed, they need to be able to seek disability benefits, vocational rehabilitation, and life-long recognition of that disability and the unique needs it presents. There are clearly many gaps, but we must start somewhere. While I cannot further diagnosis, I can use my experience and education to begin filling some of the gap. I do not have government grants or monetary means, so I am using what meager means I do have. Thus, I beseech you to participate in this 100% anonymous research study. If you have had any degree of experience for recruitment, screening, selection, and / or hiring employees (disabled or otherwise) in the United States, your opinion is desperately needed. Findings could potentially improve training methods and develop strategies to reduce the current 83% unemployment rate of autistics. Please share these links with others; I need about 400 responses to achieve a satisfactory confidence level in my findings. To begin the survey: https://survey.co1.qualtrics.com/SE/?SID=SV_6EZuiFt0Km4hGK1 Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	More proper Adult services and financial support.We need preventive care covered buy health insurances more. For all. Especially for the the poor adults on medicare, Medicaid, or Obama Care. medications funding for supplements/Health coaches/enzymes Functional Medicine Doctors/ Gym memberships.We need better health insurance, housing, and employment support services that fit our needs. The standard employment support for the disabled often has proven to fail time and time again.We need society to appreciate and respect us more evenly. AND TO SHOW it. Free/discounted technology. Easier time getting food stamps/ SSD. / other present services.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Studies of what helped/helps adults most now. Studies of what they know will help them more. Stigma and identity. Best practices for educating co-workers, fellow students, community members to understand accept neurodiversity. Self direction versus programs and the impact on happiness. Studies of strategies for making a living/ coping successfully in the workplace.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Anonymous	All of these are important, and there has not been much focus on any of them so far. Health and safety issues are important, but they don't just affect children. Autistic adults need to stay healthy too, yet many doctors have no idea how to communicate with us. Educating healthcare providers in how to talk to autistic patients of all ages is very important.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	I worry constantly about what will happen to my son if something should happen to me. I barely make enough money to pay my household bills, I have no savings and I do have a debt load with no hope of paying it completely off before I go. I am a single parent of an adult child who suffers with autistic tendancies but not severe enough to qualify for help. How does my son get a job if companies who say they don't discriminate (yet clearly do discriminate) when they 1) cut back hours to pay bare minimum part time wage so my son can't afford medical insurance and 2) won't hire you making stupid responses saying there were other more qualified candidates. There has to be more mandates placed on hiring companies to not discriminate, to provide programs for individuals who live with autism once they do hire them and to provide resources for continuing education to help promote the autistic person's well-being and job stability. My son has now spent 11 years in college, received his AA degree in communication and close to receiving his BS degree in Computer Science, I am concerned that there is a lack of help for him to receive proper training to prepare him for interviewing and networking to get a good job. His autism disability falls in the category of not being able to connect with other people on an intimate level, he has difficulty expressing himself and keeps everything bottled up inside. He gets confused about social mannerisms and prefers to avoid social interactions as much as possible. My son cannot afford to live on his own as the current job does not pay well and he was laid off from his first job with Walmart due to their ridiculous lack of communication, management turnover, lack of apathy for individuals with his disability and their scheduling conflicts with his classes. There needs to be more resources to push companies like Walmart and Target to provide better opportunities and better paying jobs for people like him without him having to be afraid he would be penalized by saying that he lives with autism.. We need programs and services to help adolescents and young adults to cope with leaving the school system and stepping out into the work environment. We need programs and services to help these individuals prepare their resumes, develop interviewing skills and develop social and networking skills that will help them land jobs, good jobs. Many of these young mildly autistic individuals are brilliant and are often overlooked because they lack the social skills to mix in with the rest of the company. Where do we find this help without pouring out alot of money we don't have to make this happen?Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Katie Murphy	More rigorous implementation of the Olmstead decision, particularly in regards to group homes or specialized housing for autistic adults. We need to ensure that these environments are less restrictive and grant autistic adults with a level of autonomy appropriate to their chronological age (i.e., deciding when to go to bed, how long to engage in certain tasks and how often, privacy rights). More services for adults across the autism spectrum.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous	Repeating some of response to Q4: There's a significant need for further training for health care providers in all areas and environments and across the lifespan, including women's health care providers. Need for funding for training, and increased reimbursement for working with DD/ASD clients (as they often need longer visits/ more significant work-ups). Screening/diagnosis and services for older adults will become even more important as the population ages and this group was not likely recognized at younger ages.Themes Addressed: Improve access to diagnosis for adolescents and adults; Need for a larger, better trained and compensated workforce for adults with ASD
Cindy Clearman	Services for adults are most lacking, as well as the general education of the public regarding persons with ASD. Programs for adults with ASD in the community are insufficient in most communities.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD
Cheryl Eng	There is a big need for housing and care for those individuals who will never be able to be on their own, as well as respite for their caregivers. Another need is services including job training, social skills in the workplace, from interviewing to dealing with other people. Also helping individuals determine the best career path based on what types of sensory issue they have and helping them find their own path. Many times if these types of services were made available in the first 2-3 years of transitioning from school, the individual would be well on their way to supporting themselves. These seem to be the services that are cut first.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Claire	Well, there's a lot of suicide for people like us. If there's a learning/ intellectual disability, then we're expected to live into our 40's. It's kind of grim, and it needs to change ASAP. We need more, and better, services. That's not an opinion, that's a fact. Housing options that are better than a long-term care, or a glorified institution. Employment needs to be taken into consideration not just for autistics, but for all disabled people. Our unemployment rate is staggering. More specific to ASD, however, would be challenges like interviews (essentially a social skills test), discrimination in the workplace, confusion on self-advocacy, poor enforcement of the ADA, and so on. Overall, a better access to services needs to be done, as well as an addression of the sheer gap between services for children and adults- compared to children, Autistic adults can usually expect to get breadcrcumbs of that amount. As said, better enforcement and an update to the ADA. Disability payment needs to be updated, as people on disability are living in poverty and can only save up $2,000. That's unacceptable.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Crystal Reuter	Education and transitionThemes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Penny Salvato	Our children are not treated with respect or as equals in the work force, therapy, or housing.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
david may, KidstokidsII A NJ Non Profit Corporation	life span issues and services programs for the post 21 year old are appalling. Schools are ill prepared to negotiate the school to work relationship that are beyond low level jobs. Again I have a model that is being piloted with the PGA to create higher functions jobs. and I have a pilot with the courts that not only hire our kids but we are taking their young offenders that are not violent and having them do community service with our programs. Again happy to shareThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Donna Gruber	I am having an unbelievably difficult time finding ****AFFORDABLE**** supported housing in safe neighborhoods. There needs to be a database of affordable housing and ***A PLAN**** to count how many adults with autism are going to need affordable housing and then find it, build it, list it. Right now, since this big movement away from residential, every parent now has to create their own affordable supported housing for their adult child. We parents don't have the experience or skills to do this yet we are given yet another burden now to do this. Education also needs to be moved away from this useless equality of access to getting specific education from K-12 all through school focused entirely on vocational training, independent living, mobility (getting around), and community living. So much time in my son's education was spent on learning useless things when he could have been learning job skills and skills to live and work in the community. A whole curriculum could still meet state standards but would be written specifically to these goals. Eg studying weather should be focused on how do I dress, how do I plan for transportation based on the weather, how do I make sure my home is heated and cooled etc. The current books and curriculums are 100% useless toward moving our children toward being able to live life as much on their own as possible. There needs to be more work done on how to make sure our autistic adults are safe at home in the communities. There is working being done on Smart Homes and kind of an onstar thing for homes for disabled people but these companies need funding and help and this made available all over the country.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	We have nothing in our community besides Nick Amster workshop. We have group homes that aren't staffed by educated employees for special needs. Again, I feel it will be up to me and eventually my daughter's siblings to take care of her.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD
Elizabeth	Again all of these. Autism Speaks and most agencies focus on kids, but not what happens when they grow up. I think we need to work on public education. Adults with ASD can and should be a valuable part of the work force.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	Aging, maintaining employment, community integration. Effective interventions for previously under-served adolescents, especially as they prepare to transition into the workforce.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition and adult services is practically non-existent for the child who phases out of the system at 21. They are often left in limbo with nowhere to go once they lose their structured environment Research in workforce development should be a top priorityThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Geovana	Quality of life across the lifespan Housing Financial planning Transition to adult servicesThemes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Autistic adults tend not to get many services, since the autism research and support tends to be focused so closely on children. Some people even think that kids can grow out of being autistic! Autistic adults like me could benefit from vocational training, including training in social skills and workplace norms. We might also benefit from training and assistance with "home economics" skills; my executive dysfunction often make it very difficult to use these skills, even if I have them, so more training and even support staff who could help me do these things would be immensely helpful. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	More needs to be done to help train our children to be the most independent person they can be. ABA therapy plays a HUGE part in that so we need more providers, more accessibility, insurance companies to help pay for it, etc. Better screening of personnel who will be helping to care for our children in group homes. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Need for a larger, better trained and compensated workforce for adults with ASD
Heather Winterbottom	Housing and supported services and employment for adults with Autism, the support staff being highly trained to assist people with autismThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	aging, transition and adult services, vocational trainingThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	We need more residential and educational funding in ASD with therapy to train these individuals to become a functional member in society. Many times it is better for children with ASD not be in inclusion classrooms as it disrupts the learning of others AND a child with ASD can learn better in a structured 1:1, 1:2, or 1:3 environment which can improve functional outcomes. Inclusion can be at social times such as recess, lunch, snack Etc. We will have an increase in success stories with the education provided in this wayThemes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	All adult services/quality of life across the lifespan financial planning housing community integration aging transitions vocational training with education All services for adults diagnosed at or around 30 years old and older. This age group has all but been ignored with the earlier diagnoses techniques we have available now verses twenty years ago.Themes Addressed: Improve access to diagnosis for adolescents and adults; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	Mainstreaming into society. Vocational programs based on abilities and interests. Means for self-sufficiency. Chidren with autism do not disappear at 18. They become adults. Then what?Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jenni Sherriff	Again: adult support is desperately needed. Support services abound for kids, especially kids who are severely affected. Adults are left to fend for themselves. I can't contribute to my family economy because I can't hold a job due to my autism. I can't get welfare because I'm not officially diagnosed. I can't get officially diagnosed because diagnosis is too expensive and because the professionals who diagnose autism don't take insurance. I'm stuck living in the slums because we don't make enough to buy a house and because financial aid for people with disabilities is so difficult to get. Community integration is a totally different thing. Thanks to organizations like Autism Speaks, people are taught that autistics aren't important members of society. They feel, therefore, that it's "too hard" to include us. I've been told time and time again that I'm "too hard to be friends with". I've had people claim to want to be friends only to have them suddenly stop speaking to me weeks later with no explanation as to why. What does the future hold for us? If this doesn't change, the future for autistics will be just what it is now. Loneliness, living with their parents or alone in the ghetto, and being constantly reminded that they don't belong. We need social and legal support. We need to know that we aren't, as I have been so often, going to be hired for our abilities and then fired for our disabilities. We have a LOT to offer the world and more than 80% of us are dependent on other people for our support because too many employers expect us to "stop being autistic" while we are at work. A paraplegic is never asked to be able to walk while in the office. A deaf person is never told they are expected to be able to hear while they are at work. But autistics are routinely told that they are not employable if they aren't able to adequately mask the social skills deficits which are inherently a part of autism. Survey the neurotypical community. Educate them on how to properly treat autistics. Find ways to ensure that employers properly treat people with disabilities. Because the occurrences where kids get really cool jobs where their disabilities are valued and embraced are the exception, not the rule. Quit researching autism. Quit surveying epidemiology. Start researching the way the community treats and reacts to autistics. Start figuring out patterns in the abuse we suffer from the non-disabled people in society and figuring out ways to keep that from happening.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Eric J Jorgensen	Financial planning for families with a child or sibling with ASD has different challenges than a "typical" family, and this needs to be understood & captured by the planner. Families need to be aware planners may not be familiar with the challenges they face, or may not know how to plan for them. Many individuals with ASD are very employable, yet the focus still seems to be on food, filth and flowers. Trades like plumber, electrician, mason, etc... could all be great jobs for those with ASD - yet there seems to be little outreach or education. Focus seems to be concentrated on college education. Families need to see positive examples of success, and be coached to allow their child/sibling to live as independently as possible. This includes interacting with the community on their own, as self-advocates. More open and frank discussion with small business owners in the communities. Help them understand what individuals with ASD are capable of - under the guise of how it can help their business be more successful, not "do a good deed". Ask business owners what is holding them back from hiring individuals with ASD, and address those concerns. Work with the businesses to overcome the bumps that are bound to occur. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Julie Lorenzen	Not enough resources are available for adults and funding keeps getting cut. This makes independent living more difficult. Often, I've found the best programs for adults have been developed by parents. Have seen some wonderful workforce developments for people with ASD. Would love to see more opportunities available and would also like to see research on what types of programs work best.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Not much and this is UNACCEPTABLE. Parents such as myself live in fear that they will have to live forever and even the day to day activity of holding down employment is a constant struggle when there exists nothing in the form of guaranteed safety guards in place for individuals affected throughout their life span. State to state and depending on where people are geographically throughout the country, the lack of services or lack within services become even more dire; there simply is not enough of anything for Autism assistance as a whole. More research should be directed towards the aging of Autism; those who are small children upon first receiving diagnosis will eventually grow into adult hood and the horizon is sparse when looking at what is available to people on the Spectrum throughout the lifespan continuum. This needs to change immediately or the wave of people needing services that are in essence obsolete will over power the medical infrastructure, for one, much in the same way it will for the Baby Boom generation.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Question 5 and 6 have overlap. However, future studies need to assess community resources to support these individuals. Many adults living with ASD live with aging parents. Quality of life research must also be explored. More projects must be funded to assess effective transitional models of living. Barriers that also need to be addressed is the each state's allocation of resources. In Ohio, group homes are being closed in 2017. Where are these people going to live? Alternative plans for housing are not forthcoming particularly for poor counties in Ohio like Mahoning, Trumbull and Columbiana as examples. Continue to conduct longitudinal data on adults with ASD. The UK is far more progressive in this area and is beginning to explore ASD transition at old age.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Katherine Hall, Autism Society of Northern Virginia	Adults need more resources to help them make their own decisions about living options. There is a huge gap in services for aging adults on the autism spectrum.The transition period from high school to college and career is a huge mess for adults and many are not reaching their full potential.The unemployment rate is currently unacceptable and needs to improve. There has to be more employment options for adults than IT jobs because not everyone with autism wants to work with computers. Right now, the only services available to adults are vocational rehabilitation, SSDI and Medicaid wavers with wait lists that are several year's long. There needs to be more services for adults across the board. Speech therapy, occupational therapy, social skills and psychological therapy needs to be continued through adulthood and into old age. Adult therapies need more coverage by insurance.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Kelly Soisson	Parents need all of these things for their children. What we need is not only the research but the agency that can help us line up these services that match our individual kids. All the research in the world means nothing if it doesn't direct the child to the right services. Our teens and young adults need mentor ship programs. They need peers to accept them and include them.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Need assistance for adults with autism and their families in navigating available adult services; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	1. Vocational training & employment 2. Housing 3. Financial planning 4. Community integration 5. Aging transition 6. Health and quality of life across the life span 7. Adult education Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Laura Cichoracki, parent of a teenager with autism	There are a great deal of young adults with autism grappling with these issues right now. Unless we come up with some effective strategies in a hurry, they are all going to wind up on various publicly-funded programs. Why not intervene when they are much younger and hopefully minimize that effect? The Wolff Act is marvelous, allowing a disabled person to earn an income and save for their future without the risk of losing desperately-needed community services in the present. In our area, students on the spectrum are sorted into two groups: either you graduate and the district drops you like a hot potato, or you do not earn a diploma but receive what passes for life skills and job training until the day before you turn 22. Neither of these groups help my son achieve independence in the long run. Right now, one is too ambitious and the other inanely redundant. I think special ed students who receive a diploma should be able to continue receiving individually needed special ed services, be it to work on getting a diploma or tailored job training skills, until you age out. No more pigeon-holing! I also think that a LOT more services need to be offered for teenagers with regard to future job training and/or continuing education. Technology is a big part of that, and a huge pool of possible income for persons with autism. As it stands now, my son can get a diploma and then be dropped like a hot potato from the school district's special education services, or he can get a certificate of completion (basically an attendance award, holding no educational value whatsoever) and receive "young adult" services until the day before he turns 22. Neither of these programs are right for him and for a lot of his peers. He will need help past high school, but he is capable of quite a bit more than what the district is willing to provide. The young adult program in our area is a joke, in my humble opinion. The students do laundry and clean the cafeteria after middle school lunch. My son has been doing that for two years now, and can prepare his own meals. Again, I cannot repeat enough that each person with autism needs a treatment plan specific to that person, and not the rubric. My son is defying the outdated notion that ASD students are either high-functioning and need minimal support or are low-functioning, requiring a lot of support and generally not expected to learn the same academics as peers. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers; Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority
Lela Rondeau	Creating additional incentives for businesses, even if on a temporary basis, to hire individuals with disabilities would break the barrier of fear that a lot of employers face. There is also a huge need for legal clarity regarding what the school districts' responsibilities are in terms of preparing students with autism for adulthood. Federal guidance would be very beneficial. A common occurrence in school districts is for students with autism to do well academically and then, on the cusp of graduation, realize they need community based instruction, mobility training, soft skills instruction, etc. This is a challenge because Ed Code says once a diploma has been earned, it is the end of educational services, yet it is also our responsibility to prepare students for adult living according to the transition services listed in IDEA. Parents need information from an early age that the goal for their child is maximum independence and the ability to self-advocate. Parents understandably want the most services possible for their students while they are in school, which can backfire when students grow dependent on supports like one-to-one assistants. Transition services need to begin earlier and be more robust for students with autism and there should be funding to support that. These students need a lot of time to get direct instruction and practice to be prepared for work later on. There also needs to be clarity regarding Regional Center and Vocational Rehab's roles with respect to students with autism. Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
LISA, Special Educator	ALL of the above! Services (housing employment, community integration are the biggest issues) and policy - see my previous answers. Priority to educate the students with Autism, but also to revamp the entire system so there is additional funding beyond the age of 21. In general, we do a poor job with meeting the needs of ALL students with disabilities once they enter the adult system. Funding streams k-12 need to be re-imagined so that we are not spending 100's of thousands of dollars on a k-12 student's education (that prepares them for no "future"), just to turn around and give them little to no support once they leave school - when they need it most. Family support and education is vitally important so parents are not surprised when k-12 education ends and the types of support offered to their adult child differ greatly (or rather POORLY). Also, parents need to look to the future and plan for their student's needs for when they are no longer able to care for them. Many parents do not face this fact until it is too late - if at all. Workforce development and stronger collaboration. There are many areas of employment that would suit people with Autism - with training for the person with ASD as well as employers, and re-configuring jobs/requirements/duties to align with strengths of the person as well.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Lydia Schuck, PhD, Parent of young adult with autism, community living services provider, education researcher	Please increase research and services related to lifelong learning opportunities for adults who do not have intellectual disabilities, but are not able to attend college or have employment due to sensory and other issues. Please increase funds for transition-focused learning opportunities to high school students and young adults. Please increase research into services for young adults who do not have an intellectual impairment but are not ready to move directly from high school to college or community-based employment. Increase funding for small demonstration projects in community inclusion strategies.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lisa Settles, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders	Advocacy and awareness has really focused on young children and people know nothing about adult diagnoses. The best way to address many of the needs will be to provide education on managing behaviors displayed in ASD to those working in housing, voc-training, employment, and educationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Linda Tortorelli	Education/vocational training - employment/housing/community integration. These all go together and need a high level of focus.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition to adult services from children/adolescent services, vocational training, employment, financial planning, sex and healthThemes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Vicki Martin, Lakes Area Autism Network, Warsaw, IN	Transition into adult services including education, vocational training & employment. Need something like "Project Search" (www.projectsearch.us) in place for this. Vocational Rehab by itself is useless for employing individuals. Lack of public transportation in rural areas. Research Workforce Development "Project Search" (www.projectsearch.us) is an example of this. Now that the DSM5 has been reworded to say that higher functioning individuals (Aspergers) no longer qualifies for the diagnosis of Autism eliminates some VERY much needed services such as Social Skills Training, Sensory/OT. Social Communication Disorders aren't diagnoses well enough yet to get these services through this diagnosis. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	1. Respite, in home and away from home 2. Housing, including campus environments 3. Less reliance on anti-psychotics to control behavior 4. Lower staff:client ratios. It is hard to find anything lower than a 1:4 ratio around here but my son needs a 1:1 or a 2:1 if out in the community. 5. Affordable preventative dental care. Everyone should have it. We pay thousands to anesthetize our son for dental cleaning. We makes sacrifices to afford it. 6. Recreational facilities. More money for recreation. The Special Olympics doesn't even serve my child. He just wants to splash in the pool, not compete in a race. He can't even comprehend a race. He was also too autistic for autism camp which amuses me. Yet, when he is physically active, he is happier and healthier. Easier to care for. It is worth the investment in recreational facilities and adaptive bikes. MORE HOUSING: Even Supreme Court Justice Ruth Bader Ginsburg understood the complexity of needs when she carefully crafted her opinion in the 1999 Olmstead case to make it clear that community inclusion might not be right for everyone. Such integrated settings, she wrote, should only be required 'when the State's treatment professionals have determined that community placement is appropriate' and 'the transfer from institutional care to a less restrictive setting is not opposed by the affected individual.' Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Mary Schmidt	ALL OF THESE My son is in college with a 3.4 GPA but has limited social skills and public safety skills. We cannot get him approved for SSI in order to get into our state's programs and supervised/independent living. He has so much potential but we don't have the financial resources to provide everything he needs. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Mary Pulles Cavanaugh, Thinking Moms Revolution	WOW! That is a great question. Especially now there is a movement to move these man-made brain injured adults back home. It is my understanding the parents/care givers have to apply numerous times to even get social security for these affected family members. These affected family members also do not live as long although many live longer than their parents/caregivers. Many are capable of receiving more education but do not have the support they need to work with their disability. In the very spare communities that are addressing this population 95% of the people do not drive. These people need a purpose just like we all do. This is what our goal should be. Give them a purpose and a passion. Give them self worth. These people are sicker than most and that should also be taken into account. They need wellness support. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Anonymous	1. Ensure that effective interventions do not cease at age 18. 2. Develop professional position (e.g., Autism Navigator) that can monitor and support health and life participation throughout the lifespan, not just until age 18. 3. See comments about quality care-workers. 4. Provide support for continuing education of individuals, vocational or otherwise. 5. Tax incentives for large and small business to employ individuals with accommodations or support. 6. Develop small scale, integrated supportive housing communities. Reduced rent/lease/purchase price for college students working as caregivers, career caregivers, and family members. 7. Ensure access to medical care. 8. Monitor health and safety through development of new oversight profession (i.e., Autism Navigator) with low caseload to ensure adequate attention. 4. Focus on transition and adult services, including supportive housing and work opportunities. 3. Research a variety of models of housing, supportive employment, care-support, and monitoring to determine best outcomes for life participation and happiness. Include selection of urban, suburban, and rural models. 4. Collaborate with not-for-profit businesses to develop products and brands for marketing to socially conscious consumers. 6. Focus on access to continued communication interventions for low/non-verbal individuals to support employment opportunities. 7. Provide training to workforce and supervisors on communicating with employee using alternative/augmentative communication strategies. 8. Research systems-model communication interventions for adults. (Let me know if you want to do this one. I'd love to participate!)Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need assistance for adults with autism and their families in navigating available adult services; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Overall awareness of ASD will improve services and lives of those with ASD. Carryover of educational goals into adulthood should be funded.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lani White	Transitional and adult servicesThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions
Toni Poh, Educator	Families of adults with autism need encouragement, support and services available at local centers.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults
Priscilla Arena	All of the above. Colleges need to have bridging programs be a part of their institutions, and at no extra cost to parents. It should be like any extra curricular activitiy. Instead they are separate organizations that do it. Then after there should be a life skills program to help them acclimate so they can live in their own. Instead of simply one house with 5 or6 bedrooms for independent living, their should be co-op building built and tax breaks/ incentives for builders. Each floor should have it's own assigned person/ persons to help and watch over. In N.Y. they stopped building independent living facilities10 years ago. There are waiting lists for years and years. When there is finally placement, it could be in several states away. Family members should be able to be within a decent distance to visit. Research in work environment. Asd people have talents just like anyone else. Social skills is their problem and peoples who don't understand that. They thrive on routine, so things that may be mondane to others may be perfect for them. They are systematic thinkers also.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Paul Raich	I worry about these topics in what will happen to our son when we are gone. I believe financial planning, housing, and vocational trading will be critical to integration a large generation with autism into society. Also how will these children be provided for if they do not have or cannot find employment.Themes Addressed: Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	All of the above are vital and need to be a priority and have gaps in research lessened. This is an enormous problem which will continue to expand as the years go by. Health, aging, transition, adult services and vocational training need expanded policies and services. Right now those leaving the educational system as feeling as if they are falling off a cliff and families are left confused and alone. If transition services were better, the transition to adult services could become a smooth, natural process More employment opportunities for those with disabilities are neededThemes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Rachael, Educator/Parent	At this time the unemployment rate for adults with ASD is 85%. This is due to the fact that ASD causes a disturbance in social interaction with people, places and objects. Schools have yet to provide necessary support and instruction to make future graduates employable. The idea of educational programming is to create employable and responsible taxpayers. However, schools are not supporting ASD students appropriately through transition services in middle school and high school. Many schools feel that a disturbance in social skills has no educational impact if a student gets good grades and good standardized test scores. High functioning ASD adults who are not employable, but hold high school diplomas and postsecondary degrees have been failed by the educational system. Also, for those individuals who suffer from an intellectual disability as well ASD will need housing throughout adulthood. The waiting lists for supported living in group homes, in most states, run 7-12 years even if a family has the financial means to pay for it. This limits the individuals in experiencing socialization and interaction with the community if they are sitting at home waiting to get into a shelter workshop and/or group home. Also, it is an enormous emotional and financial strain on families who are trying to care for an adult who has the cognitive abilities of a toddler in addition to working.Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Needed are more advocacy & assistance personnel for all the topics listed above.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Ray	Going back to the services issues, autistic adults need help and support much like their child counterparts. Things like life skills and dating and sex and abuse prevention need to be taught so that adults have a chance at living long and fulfilling lives. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Suzanna Dillon	1. Health and quality of life across the lifespan, particularly as it relates to involvement in community based physical activity programs that allow for health enhancement as well as community integration. 2. Transition services from the schools to include transition programming focused on physical activity needs across the lifespan and health-related fitness needed to be a productive employee/build physical capacity for work.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions; Research and services to improve health, medical care, safety and quality of life across the lifespan
Alexa Appel, Autistic person	I seem to be misreading your questions and answering theme one ahead. I reiterate: Acceptance, public recognition of our lives as valuable and not as burdens, jobs for adults, repeal the "disabled people don't need to be paid minimum wage" thing and the cutting disability benefits to disabled people because REALLY. Treat our lives as meaningful. Hiring more adults. Less on curing, more on finding ways to fit people who are aging out of the system into new support networks.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Rebecca Singleton	We hope for more vocational training, employment and integration into the community We looking for research into workforce developmentThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sara	I think Adults diagnosed later in life with autism should be included. I am 56 years old, my primary doctor told me a year ago. He referred me to a doctor for testing in autism but my health insurance Blue Cross & Blue Shield rejected him. Most folks have Medicare /Medicaid that doctors will accept for those with autism. I live in Colorado Springs CO. I think treatments and interventions should also include Adults diagnosed later in life with autism. I am 56 years old, my primary doctor told me May 2015. My Mother told me when I was in high school that I am slow mentally, was brought up differently than 'normal' kids, and kept away from others so I would be use to being alone when I was an adult.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults
a	employment transition community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Shannon, Mom to 3 boys with autism.	I'm terrified police will kill my adult autistic son during meltdown. His body's response to medication is opposite the norm. If they inject him in jail to calm him he will react to the drug in excruciating pain from muscle spasms. They won't know he's not on drugs, he.'S having an autistic meltdown. He will be physically & mentally harmed because they lack education & training on what autism is & how to work with autistic individuals. SSI drops them cuz they have skills but nobody will hire them or put up with their behaviors that appear rude even though they don't intend it to be rude. They will be homeless because they slip between the cracks in the current system.Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	There should be more research on what supports most effectively help people with ASD maintain employment, live independently, and have better quality of life (particularly in terms of developing meaningful connections with others in the community). I also think that there needs to be more focus of developing self-regulation strategies and developing necessary skills instead of trying to eliminate stims or make people with ASD behave in normative ways. I also think there should be research on how stereotyping and discrimination impact this population because that could be a significant barrier for people with ASD. I think effective planning and preparation for postsecondary education is also important. More tracking of outcomes and research on interventions across the lifespan.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous, Behavioral Specialist consultant	Some clients I worked with required intensive supports, ie. 1 on1 or 1 on 2 ratio which they received in the educational system. It is a challenge to complete simple tasks. Others, that were higher functioning and did want to work in the community, were rejected by the office of vocational rehabilitation as the guidelines were not adjusted to accommodate the individual. one size does not fit all! Then when transitioning to adult services after school, the availability of service declines at a critical time when it is easy for the individual to regress. the vocational services that were available were adult training facilities, sheltered workshops, or community employment. In my opinion, the biggest gap is between sheltered workshop and community employment. perhaps a more graduated transition with realistic goals and time frames. ATF, then workshop, then ???, then supported employment in the community. There do not seem to be concrete benchmarks to transition from one to the next with community employment as the ultimate goal if possible.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Trish, Parent	There is a severe lack of services and facilities to house those with autism. All individuals that require monitoring, care, support, assistance, safety should be treated and cared for with respect. All parents/siblings want their family members in a safe and happy environment. There are years long waiting lists for quality placements. Because an individual has a disability does not mean that they should be housed in unsafe and harmful environments. The goal of all should be to create an environment conducive to a safe and independent society. Voluntary permanent item with GPS tracking throughout the country with interagency communication. Job sites that provide 'sensory attentive' spaces for work or breaks. Employers provided financial incentives to employ both those with autism AND job coaches. Three birds with one stone policy can be implemented with improving the infrastructure of the country while training and employing those with autism while employing qualified job coaches to assist. As in the past for the deaf, blind, and physically disabled, the government needs to provide and implement policy to create a system which allows autistic individuals the opportunity to be a productive member of society using their strengths by allowing accessibility to that society.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition & adult services ..Vocational training .. Employment!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve transition services, and provide better assistance for young adults and their families during transitions; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Huge need for employment and housing support for adults. Social isolation is the biggest risk and most common outcome for the increasing number of individuals with autism who are aging up into adulthood when school and family support are limited. Great need for enhanced services supporting employment and housing needs for adults. While there has been growth in the number of programs offering training for behavioral intervention (focused on the early end of the age spectrum), there is limited research or capacity building on training of multidisciplinary providers to meet the needs of adultsThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jacque Ruch, Easter Seals and Private Practice Provider	It is very bleak. We invest hundreds of thousands of dollars in education from birth - 22, and then services virtually end, due to lack of opportunities, directly related to lack of funding. Workplace support, training, and development is key. MANY of our adults could be off of the SSI and medicaid rolls, if they had a supported employment opportunity. They are ABLE and WANT to work. They need help!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years	Specialized systems would be ideal at secondary education levels - teaching students social and community skills as well as vocational and academic. So many of my students on the specter began to struggle with emotional issues at puberty. Having extra, built in support would be so helpful.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cheryl Peeples	Immediate concentration on adult services and housing. Lastly, there are thousands of children aging out of the school system. Where are the services and housing for adults? Our country is unprepared for the sheer number of Autistic adults.There needs to be a huge effort into services and housing for the children aging out of the school systems. This needs to be done immediately. These parents have no help one this happens. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous	The options for adult services is unclear at this time. Additional resources and funding must be planned as the number of students requiring services is growing and will have more shortages as the students transition into the adult services world. With the minimum wage increases being demanded, the opportunities for adults that need training becomes a burden on places that would like to hire. Credits or tax breaks need to be developed to allow the small business owners to assist the adults.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michael Waddell, Saint Marys College of Notre Dame IN	Emphasis should be placed on supporting family well-being, with access to education and meaningful employment coming a close second. Cultivating meaningful supports and full inclusion in these areas will foster flourishing and inclusion in other areas of life. Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anna	ALL OF IT. Everything in relation to access to healthcare, quality of life across the lifespan, transition, Everything in that list can be used to help autistic adults. I think more should go towards finding supports for adults, because too many years of "what about the children" lead to erasure of support for autistic adults. Also, on a sociological idea, more research can be given on removing barriers that keep autistic adults from being able to access quality healthcare. more on access to services and resources (in particular for adults), Again, "safety issues affecting children"? um, do realize that children are not the only people who have "safety issues"... don't erase adults. I'd probably say to research more on finding out the best ways to support autistic people in employment.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Marty Weiner	I think services for adults (at least, in my county) suck! Very limited, and VERY, VERY parent-based. It's great to use the parents, but parents don't live forever. Integration is great, but it's a two way street---can't just throw the adults into the world---the world needs to be educated, too. Adult services should include socialization, communication, too---not just for kids!!!! Vocational training, job coaching, help with getting things done. Policy: goals of all social services would be to enable disabled adults (including ASD) to live as full a life as possible, with the least amount of support as possible. Again, it shouldn't be one size fits all. Some adults, with some modifications, can live pretty full, independent lives. Some can't, so they need more services, more assistance. I think workforce development Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Services and research should take into account the perspective and choices of adults and their families/caregivers
Julie Curry, son with autism 21 yrs old	Aging, transition to adulthood,...all of the above are concerns of mine...They are of equal importance and priority in my son's situation. He did get a core 40 diploma, but now what does he do. Horrible at preparing a parent, legal guardian what's next for my son. What are my son's options now out of school. I have to search the internet for everything. We have the FSW, not the Community waiver for housing. I need this waiver for he will likely never be able to live on his own. I am currently trying to find a group of guys for my son to hangout with. He has no personal relationships like other 21yr olds who may be in college or are driving. His only natural support is me, no father..He has a behavioral therapist. More services to assist adolescent adults to help them feel/ perform be productive in society, provide transportation. I work full-time, I am unable to drive him all the time.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Need assistance for adults with autism and their families in navigating available adult services; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Jeanne Kacprowicz, mother of 13 y/o with severe autism	Programs for adults are being cut and the number of children aging out of school is increasing. Housing and vocational programs have long wait lists, hospitals have no facilities for an inpatient (medical or mental health) stay which keep the patient safe from their own behaviors. Family usually must stay 24/7 to watch and keep them from self harm or elopement. We also need more beds for behavioral care for those who become dangerous to self or others. Communities are ill equipped/trained to deal with autistic adults in emergency situations.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Jane O'Grady	They live with their parents until the parents die and then they are often placed in group homes. If you set up a special needs trust you cannot invest it in high yield funds because the courts want everything FDIC insured, so your lucky to get 1%, which isn't enough growth for living. Transition and adult services are lacking in most states. There is not enough vocational training, employment, housing or financial planning or community integration. If your lucky you get support from family or other families with special needs children.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cynthia McLaughlin-Share	Good quality housing. Top-notch health care. Involvement and inclusion in the World at large. Their own power, a lobby, a say in their experiences and outcomes. Civil Rights. Educational. Societal. Civil Rights. Human Rights. A less bigoted country. People less afraid that by someone else being helped it takes away from them. Fewer judgemental people. More embracing people. Civil Rights for those with disabilities* *Who are killed by law enforcement more than any other group.Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options
Sarah Joor	Health & quality of life across the lifespan. Education starts young & we work to transition to have the adults contribute to society & increase their quality of life. There is not enough help here to place these adults in the workforce - skill preparation for the workplace starting earlier, many more work placement services & a enough companies open their doors to these employees or working with residences to employ people (ie. mailings, packaging items).Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I need to find roommates for my son that are more high functioning. He needs practical hands on training in a supportive group. Where can our adult children with autism go for on the job training? Are there places of business that accommodate the need for this to happen? My son is already 26 and there doesn't seem to be enough opportunities. Where is there a training facility to help all those on the spectrum?Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition planning support and coordination is lacking. Supports for individuals attempting to earn post-secondary degrees/training are variable and inadequate. Support, in the form of mentoring and/or job coaching, is lacking for individuals who are capable of working in competitive employment. Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Melissa Farley, Full Access Brokerage	I would like to see more research focusing on the needs of adults with autism. Also, medicaid funded services for adults do not address the needs of someone who is cognitively and physically high functioning, yet experiences social delays. Human interaction is a significant demand in all areas of life, especially for finding meaningful employment. Educating service providers for this population would help. Also, specific funding and service requirements for transition aged school programs to provide specialized supports for those with ASD would be helpful in preparing young adults for the future. People on the autism spectrum tend to be social "late bloomers". Many continue to work on and develop basic social skills well into adulthood. Disability services are very non-specific and tend to be set up to serve those with cognitive delays and physical disabilities. A very significant and frequent challenge for those with autism is loneliness, isolation and depression. While there are options for accessing low-income counseling for some, this is not always the best solution as many counselors are not trained on the subtle and unique needs of a brain affected by ASD. I recommend prioritizing social programs, specifically targeting adults with autism, with skill building around: how to build and maintain relationships, self-care, finding fulfilling life experiences, and where/how/why one gets out into the community. I've seen success with "internship" type programs in which employers work with support agencies to recruit people with specific skill sets. This arrangement works well for someone with ASD when employment providers understand how to carve out a specialized position in which the individual can focus on a target area of interest and excel in the workplace. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Stephanie Dahl, parent (2 children w/ ASD)	The nature of this disorder leads to sheer hopeless isolation for so many individuals who cannot navigate through society and are shunned because of their odd behavior or communication struggles. Community integration and personal assistance workers are vital to these human beings experiencing a hopeful and adequate quality of life.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Amber L Perry, ASAN	It depends on the individual and how high they function. Those at the top of the spectrum are essentially just another variation of neuro-normal, a lot of them. They prefer equal opportunity within the society. The family should help them advocate for themselves if needed. The future can be great. VR services may be needed to find proper employment. Section 8 is usually, but not always needed for housing. It is probably the most helpful service an autistic individual can have to give them independence. There are service places that can assist with budgeting. Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lucy Gratz, Job Coach/Developer Assistance	Fantastic change at 19-20 with public transportation and social prgs. It was like a second job bringing up a child with Autism-career sacrifice for me, huge money sacrifice-probably 100 to 200k-ate up savings. It would have been nice to be paid to be the parent professional I had to be to make everything possible in the end. I am one of the lucky ones -all my sacrifices of being 1/4th of my child all her life has helped me to raise a child who worked at internships and groceries and during school no less,and now is working a 40 hr week clerical process oriented job, and can handle transportation and safety and has a social life including dating. All the integration in school and internships she did, her grocery job and her school and outside school activities in inclusion and my role playing and her social skills groups helped her become socially included with the right examples.She is an integrated socially involved young adult. I promised her when she was 4 that I wouldn't rest until I saved her life and gave it back to her and that is what I did.Themes Addressed: mprove community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Roseann Schaaf, Thomas Jefferson University	Community integration 3) facilitate participation in social community activities; 4) prepare adolescents and young adults for worker roles would be useful. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Elena	We need assistance in getting adequate accommodation in the workplace, teeth in the protections under the Americans with Disabilities Act, and above all, we need public education that autism is not a monster, as organizations such as Autism Speaks would have people believe. Differences in sensory processing, social communication etc. should not be the barrier they are. Lifespan issues are a huge matter. There is seemingly no interest. Longevity issues (suicide rate, metabolic damage), sensory integration and sensitivities, differences in presentation between the genders (women vastly underdiagnosed). Sensory integration underlies a great deal of our problems. Helping adult autistics understand how to work with those issues would be extremely helpful. Adults who are diagnosed late often have absolutely no support and receive no accommodation. The research community and health services need to acknowledge and understand that the shifts in diagnosis have left many autistics completely disenfranchised. Help with life-skills, eye contact etc. later on, as well as counseling to help adult autistics deal with years of rejection, social isolation and shame are critical. Autistics after the age of 18 are not getting adequate services. This is NOT a childhood disability - it is a life-long disability. Longevity issues (suicide rate, metabolic damage), sensory integration and sensitivities, differences in presentation between the genders (women vastly underdiagnosed). Sensory integration underlies a great deal of our problems. Helping adult autistics understand how to work with those issues would be extremely helpful.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	This is the most important of the questions. We need adult services!!!!! Please consider this important need. Many parents place their young adults in adult care homes after graduation. This is costly to the state. If they would provide quality day programming, the savings could be exponential. Consider the adults with comorbid diagnosis of ASD and cognitive impairments. There is no programming provided for this population. However, good quality programming for adults with ASD that aims at meeting their specific needs utilizing an individualized service plan would be the first step in providing quality care for all individuals with ASD or even other disabilities. We also need to be aware that their is a significant population of students aging out who need a continuum of services similar to what they were receiving in their educational settings and that these students will not necessarily be in the work for full time. Research workforce development. Please see the need for a continuum of services for all people with ASD. Some will be able to work full time, some part time, but others not at all. It is imperative to recognize there are adults with ASD who will never be able to work independently or have the ability to work at all. If we do not open our eyes to their needs, we will never provide a place in this world for these wonderful people. I speak from my heart. Please acknowledge the 2% who need a programming that supports their needs as well. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Melissa Poole, Community Services of Stark County	My son is having such a difficult time holding down any jobs he acquires. He has a perception that he doesn't need counseling and meds because he can function most of the time OK without them. It's when he gets fired for his behaviors or not going to work that things get bad again. The family is stuck in a cycle I don't see ending anytime soon. It's like living with an addict who may never hit rock bottom and decide they need help. The other problem is that unlike raising a normal child who then becomes an addict, a person on the spectrum has a parent who is veraciously active in their development and is needed every step of the way so it's harder on us to let them become adults let alone not help them when they are in need. Autistic parents and tough love do not go well together. If we had more help in the form of choises for them to live and work and succeed it would greatly help the entire family. NOW !!!! I am Concerned NOW!! I have a 22 yr old on the spectrum and I can tell you from experience with him and with my clients, that there are not enough programs out there to help individuals who are on the spectrum but higher functioning. We need more services in schools to help kids get ready for the job force who don't qualify for DD services but need it. We also need job coaching for them and a way for them to transition to independence. Because they are not severe, they are falling through the cracks and some end up living on the street and not being able to have the meds they need to be productive members of the community. Please help us help them.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I don't know what will happen to me when my parents are gone. I live with them, and they provide for me (food, clothing, transportation, etc.). My sister has expressed willingness to take me in when we lose my parents, but I don't think she'll be as able to provide/allow the sort of environment I need to feel at peace with my sensory issues and other struggles. I know fewer people are missed in getting a diagnosis these days, since kids get screened more often these days than when I was a child, back in the '80s and '90s, but not getting a diagnosis until I was an adult and having difficulty finding Occupational Therapists and other providers who are willing to work with an Autism Level 1 adult has made life very difficult. Better access to therapy and assistance for "high-functioning" adults, especially ones who were diagnosed in adulthood and never received any interventions, would be helpful for those of us who have struggled with little to no help into adulthood to have a better chance at adapting to normal life. I'd like to not be such a financial burden to my family. Access to legitimate work-at-home jobs would help immensely, especially for those who don't qualify for or would like to avoid going on disability. Clear information about how to balance getting an income and getting or keeping health insurance (especially for those on medicaid) would help too. There's a lot of anxiety in not having income, and also in the prospect of losing current health insurance if/when I could find a job, since I'm not sure I could get a job that would include full benefits.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Serein Lambert	Health care is important. Doctors and office staff don't have any idea how to provide services to autistic adults. How can we measure and then decrease the discrimination against autistic adults? Self advocacy skills for adults of all ages in multiple settings ... casual, workplace, medical environment, with law enforcement. Stop trying to make me not autistic and help me to be granted human status.Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kristen and Brian Festa	We need to ensure autistic adults receive the care and supports they need in the community so the burden is not entirely on families. We need solutions for when parents pass away or are no longer able to be caregivers for their adult children. Please work to secure services for adults who age out of the system.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Artea Lombardi, Parent of Eden Autism Services	Restrictions where our adults can live or not according to Medicaid rules are a challenge. There is still awaiting list for housing, group homes, apartments and there certainly is not enough section 8 available. Employment for the higher level persons may be available, but for the lower functioning adults that is not a reality and common sense attests to that. Our older adults continue to need speech, language, music, and funding for activities. Community integration is somewhat questionable for the severely challenged. There are only so many lower level jobs that unfortunately seniors have to undertake due to financial burdens. Research is important, addressing the needs of the current adult population is equally as important because these individuals are here in society now. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Adrienne, Mother	This one is huge. The Medicaid waivers HAVE to be at a national level. Families are forced to live in one state for the rest of their lives after waiting dozens of years to get a small amount of money to care for their children. This is a travesty akin to not being able to change jobs due to healthcare and pre-existing conditions. That's the money. Next problem is the services. Today's group homes are built for the mentally and physically challenged. These persons are neither. They are a flight risk, need special foods and special environmental conditions to lesson the burden on their bodies. Long story short... there are no adequate residential accommodations and a plethora of low-functioning kids reaching adulthood.Themes Addressed: Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy
Rachel Ealy, High School Teacher	adult services is huge for success in transition. I would like to see more research on how we can help young adults with ASD identify what they are best at and then how we can help use their biggest interest and turn it into a successful career. Educational- more research on transition and employment. Medical- again medications that can help with the mental health aspects of ASD, particularly at the teenage years.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Katie Romans	Families are forced to be involved in every aspect of their adult children's lives. Education ends at 21 and there is very little transition to any kind of other services. Vocational services only superficially look for low paying, part time jobs and the adults are left without any further structured activities beyond maybe 10 hours of work per week. There is adult day care for a few additional hours per week but that only warehouses people without developing skills. Supported housing is a joke because the employees of the agencies don't get paid a decent wage and are thus poorly qualified and the turnover is high. What will happen to all these people once their parents die and can no longer take care of them? The process to obtain services is tedious and confusing and varies so much between communities and states. Community services are so limited, especially for adults. Both of my daughters have autism and are incapable of supporting themselves. How am I supposed to work part time to be able to work with them to develop skills while simultaneously saving enough money for my retirement as well as both of my daughters? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need assistance for adults with autism and their families in navigating available adult services; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jim Wurster, New Avenue Foundation	And all of these topics are key to us parents. We are concerned with us as we age and are the only caretakers of our children. Children do grow up to become adults and the services are very much lacking for them. We don't need more research to tell us what we already know and already live every day. We need help via funding to implement solutions for our loved ones and families. We need sustainable solutions concerning employment and housing and socialization and transportation. All of these 4 elements are tied together.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
DOROTHY LOTT	MOST IMPORTANT IS ADULT SERVICES, TRAINING OF THE ADULT TO LIVE A INDEPENDENT LIFE, WITH EMPLOYMENT AND HELP WITH FINANCE AND ALSO HELP WITH COMMUNITY INTEGRATIONThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Alicia	My sister-in-law is an autistic adult. She needs therapies that are autism and anxiety related. Once high school stopped everything just dropped off. She cannot work or live on her own due to her behavior, although she is very verbal and bright. The future worries me. We need more group housing, Autism group rec centers for adults, and training for severely affected adults to work in industries that might interest them: animals, art, working at home, computer services, programming, etc.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Karen Cummings	They would be ageing and housing for adult Autistic adults. My most important availability of residential housing for adults with Autism.Themes Addressed: Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy
Tita	lifespan and transition to new school and community integration Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Anonymous	Availability in regards to vocational training programs and employment for individuals on the lower end of the spectrum and housing when family is no longer able to care for adult due to aging parents. Most importantly staff training and reimbursement rates. If you don't have properly trained staff who are receiving a fair rate forget about the programs you have in place....IT WON'T WORK!!! My son is able to volunteer and work and live a full life with the appropriate staff support. Safe housing options that incorporate being apart of their community.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
J. H., parent	1. Health and quality of life across the lifespan. When our kids hit adulthood they often are totally without options. sub categories under #1 are: 2. vocational training, 3. employment, 3. housing Community integration is pervasive and overlaps all categories. It will in turn facilitate success in all categories. lack of vocational opportunities.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lucy Beadnell	Due to long waiting lists for services, transition planning is often planning to sit on the couch post-graduation until supports are available. Limited true community integration for work, living, and socializing. Limited housing options that force people into congregate care and/or living with mom and dad unless they are high wage earners. Long waiting lists for public services and limited availability of existing services. Long waiver waiting lists and stringent eligibility criteria that prevents many people with ASD from qualifying for services. Poor options for whole family support (e.g. respite, behavior training) to keep families together. Poor progress on full (and cost effective!) community inclusion. Rising arrests of people with ASD who are misunderstood and end up in dangerous and deadly situations with law enforcement.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jessica Philips, Commonwealth Autism	for true community integration to occur there must be supports/services for employment, housing, education, transportation, etc. There are gaps in research, gaps in services and policy needs pertaining to all of the above. More research is needed re: promoting independence and inclusion within community in the areas of housing, transportation and employment. research and policy implications re:Workforce development. Incentivizing businesses to employ people with autism. When employed, people with autism have more resources to lead a self-determined life. They can contribute to their communities. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Planning for adulthood must begin early, while the individual is still a minor and in K-12 schooling, but the existing system for postsecondary transition planning in schools through IDEA, which is intended to cover planning for future education and training, employment, and independent living, is a failure. USED's failure in ensuring that schools comply and that students and their families understand what planning should be occurring or being connected with resources and knowledge only leads to students "falling off the cliff" when exiting the school system and leads to these problems being dumped onto HHS and the adult services system. Move postsecondary transition planning responsibility and funding from USED and HHS so that it can be competently supervised and so that funding can actually be directed to provide guidance and services for transition planning for school age individuals with ASD instead of the educational agency infrastructure. - research that leads to more accurate, earlier, and efficient diagnoses of ASD - research on ASC through the lifespanThemes Addressed: Improve access to diagnosis for adolescents and adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services. Training for employers. Linking skills with jobs. Supportive living. Adult services. Transition support to aid successful transition into work/ college. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Housing,employment,medicalThemes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Faith, PLAN parents Boston Autism Program	Adult services including transition, education, vocation training and employment and housing MUST BE A HUGE priority. With a huge number more Autistic individuals the numbers requiring aid will only increase and we must prepare for this influx in advance in all aspects.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services--housing: not much unless you want group homes that are very restrictive and do not foster independent lives. Financial planning is needed for the times when parents will not be available--people to help take care of all aspects of finances. Community integration is needed--not the group home model where they either all go to the same activity or none go out. This is Georgia and it is the pits for living in the community. community inclusion--Georgia has only group homes that are very restrictive or minimal oversight. Supervised apartments are needed for the in-between population. IT'S SCARY THINKING ABOUT THE FUTURE FOR MY SON WITHOUT ME BEING AROUND. WE NEED HELP!!!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy
Susan Sheldon, Parent	Better options developed for adult housing, community integration/activities, continuing need throughout life for vocational training/employment, quality of life across the lifespan, transition and adult services after age 21, help for families/parents of adults with autism.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Catherine Milian, Mother/Occupational Therapist	An inspiration to myself was Martin Luther King's speech on the need for acceptance. I have a Dream as well. That there will be jobs for disabled adults. That adults will be accepted to work side by side and be with our community. To prepare and give these adults the skill set to succeed. No matter what the challenges hold for individuals in the future. They need an opportunity just like everyone else. Though if we are not providing them with the tools to succeed. Then how can we expect them too. Companies need to be willing to give individuals the opportunity but our government needs to acknowledge that even the smart high functioning Autistic adult requires different services then someone who is low functioning. I leave you with my interpretation. 'I have a dream'Where all disabled will have an opportunity to reach higher goals and not suffer continuously from poverty. That they too shall have work with wages that adhere to a better quality of life. Where all abilities will not be forced to fit into this public domain, but join hands with able bodied. Work, play, attend school and live amongst each other' Its time for the reality check of the lack of equality. To not only create awareness but to make a change for the better. The future of our children with Autism and without depend on it. The fact the brain continues to develop over a lifespan. '.The individuals who are losing in the end are the Adults who aren't attending college and or getting a job. I would hope to think there are many local chapters of services in the community of every state. Though as acceptance becomes to be a challenge not only for parents but the community without Autism. We are now seeing Autistic Adults speaking up for themselves because of this. The support now broadens from early intervention to Autistic adults needing jobs and or retiring. That is a lifespan of needs. The services are mostly overloaded with kids in kindergarten entering our school systems. Though the need of teens requiring jobs due to the spike increase from the years of 1998-2001 are becoming so visible. I can only imagine the amount of services needed when the new decade of Autistic individuals will have to fight for services. Is the need to provide more early intervention?.... This morning the news broadcast a caregiver shot in North Miami, FL trying to return an adult to his group home. Its summer time right now and most are on vacation. The regulation of what happens in these places need to be monitored more frequently. The amount of education for the individuals who care for our children needs to be regulated from every state much better. The individuals such as the police and or firemen should have better training on how to perform their duties when having an Autistic adult or child in their city or town. Besides the parents need more family support when either providing services and or getting emotional support for each other. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sue McCullough, parent	This is critical. Every child with an ASD will become an adult, barring life-ending childhood tragedy. Every parent of an ASD child expects their child to outlive them, and fears the time when they are no longer able to provide for and advocate for their child due to the parent's age-related infirmities or death. All aspects of adult services are vital to the well-being of the ASD adult, and to the peace of mind of the parents/family members. Life-long supports and access to services, safe housing, meal/food planning and supports, health care, vocational training and job supports when appropriate for the individual, social opportunities, and community inclusion. We must not "warehouse" ASD individuals in institutions a la "Rainman". But we must also insure that the alternatives are safe for the individual, and are welcomed and integrated with the local towns, cities, communities.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Andrea Colburn, parent	There needs to be a plan for what to do with the folks on the spectrum with more behaviors/less functional skills which will make employment difficult/impossible after they age out of the educational system. Parents will still need to work. What will these kids do all day? Waiting lists for quality group homes are very long. They should be able to have the opportunity to live safely and successfully outside of their homes if they wish. Vocational training, work buddies, etc must be stressed to strengthen job opportunities for a meaningful and fulfilled life for these adults. Functional life skills as well as academics should be a focus in school.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services, employment, vocational training, housing communities with integrity and dignity. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Margaret Woch	The future is not prepared for the influx of adults who schools, and insurances who have undeserved their clients. They have living, health and dental issues that are more urgent than the people who can navigate and care/defend for themselves. The science is not as urgent as the help for those who are already living with ASD, and need a home, better schools and protection from being exterminated by assisted suicide laws that don't deal their lives valuable. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Jeanne Fitzgerald	What will happen to my daughter when I am gone? I fear for her life as no one but my husband and I understand how sick she is. People will attribute her problems to autism and not the medical reasons that are really causing them. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous, parent	Transition services are key for a content adult life. Schools are often pressured to support academics at the cost of meaningful lifeskill and vocational training. There should be more work programs for young adults and more readily available transportation particularly in suburbs and rural areas where mass transit is very limited. Also there are not enough mental health providers trained and willing to work with those with disabilities. Housing is a critical component as well as recreation activities for individuals with autism. WOrkforce development is critical. Working with individuals with autism can provide meaningful work for others also especially if ADEQUATE compensation is provided. Also make technology more readily available and affordable for individuals with ASD and their families/caregivers. Encourage providers to provide as part of tax incentive plans. Also I feel that groups that support ASD do not work together often enough. For parents it can be like ascavenger hunt obtaining meaningful useful information. Working with individuals with autism can provide meaningful work for others also especially if ADEQUATE compensation is provided. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Joe Hickey, CHSC Dubuque	To me, having two kids with ASD, The biggest challenge in our family is transition. The transition of preschool, kindergarten, elementary, and secondary school, college has been extremely difficult. We have to focus on both of our kids. Transition itself is a painful process for all involved. Each individual presents his/her own challenges. Each process is varied with each individual. Vocational planning has been a great resource. Employment, housing, financial planning, all posses true challenges. Transition is the primary means for each of our kids. Extensive planning is required for short and long term goals. Transitions for individuals must be included. Transition, affects individuals from preschool through adulthood. I think a primary focus on it is essential. If the world can be opened even slightly, individuals can begin interaction to the larger world. Once the door is opened the individual can express him/her self. Each individual has gifts and talents. All need to be encouraged and allowed to express themselves.Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy
Patricia Garon	Autistic health issues are vast and not easily identifiable. Support groups and community Behavorial, medical and vocational centers would be an extremely positive influence and necessary contribution to the Autistic Adult and bring hope to their future. The community awareness and hands-on involvement would bring safety and security to all people.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Jenny Latham	Transition! Community integration Education Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD
Anonymous	Vocational training, employment services, and community integration assistance are all important in my mind. However, other autistic individuals may see a larger necessity in areas that I do not need personally. Each autistic individual is unique, so their needs will differ. That being said, the biggest gap in policy is recognizing autistic adults and assisting them in their everyday lives. We need to be focused on how to help make lives better rather than making fewer autistic people. Once lives have been improved, then this focus would be appropriate. The most important thing in this area is providing assistance for autistic individuals in communicating with people about their condition. It would be amazing if campaigns tried to talk about what autism actually is rather than letting the public believe that autism is mostly a savant syndrome or a childhood illness. Focus on assisting autistic individuals throughout their life, not just until they become adults. This is the most important thing I will say in the entire survey. Autism isn't a childhood trait. It lasts a lifetime. The priority should not be to cure autism, and focusing on some of these aspects treats autism as a disease rather than a trait, which is insulting. That being said, the biggest gap in policy is recognizing autistic adults and assisting them in their everyday lives. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;Improve access to diagnosis for adolescents and adults; Need assistance for adults with autism and their families in navigating available adult services; Services and research should take into account the perspective and choices of adults and their families/caregivers; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Tammy	All of these things need to be brought to the forefront of the autism issues we face. This is even more important than research into causes and reasons for autism's existence. There is a lack of diagnostic resources for older kids and adults. More focus has to happen on education and employment. There is simply not enough help for people on the spectrum to live independently or to live in autism friendly communities. Autistic children become autistic adults and there simply are not enough resources out there.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD;Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Susan M. Taylor	Son 1: will likely continue to need 1:1 job coaching for employment due to behavioral support needed. I continuously advocate to all who will listen for the flexibility of allowing the in home support person under the ID waiver to give the job support needed. Instead I have to work through another beurocracy of DARS and their provider services. My son has had many hours of paid work in a family business with me as job coach, or several years ago on the CD waiver, he could have his attendant as job coach, but since receiving the ID waiver in home support, they are adament that it MUST go through DARS. For the under ten hours a week he works and due to the nature of his handyman type work, it would be so much more practical to allow the person who works with him several times a week and knows him best, to be able to do the employment piece as well!Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Lifespan issues are systematically ignored and undervalued in policy and research, as if asd individuals remained children all their lives. Given the prevalence of autism, ignoring the needs of adults on the spectrum is not only costly to our country, but also attacks their dignity as human beings. Instead of pouring resources into finding out causes of asd, the bulk of resources should be devoted to bettering the lives of the asd population that already is. Please invest in every single topic mentioned in the question above to allow for a dignified life to asd adults Quick and universal access to evaluations as well as research proven therapies should be prioritized. Better access to respite care for caregivers, as well as community inclusion in particular for asd adults (access to housing, jobs) should be prioritized as wellThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	We are concerned 'three objectives partially met' and ''two objectives were far below.' The cause of autism is important, but not useful for those children/adults who are living with autism. We agree with 'Longitudinal data on life course.' We are concerned 'adults experience a lower quality of life.' Research using health outcomes is needed, as overall health determines quality of life; people with brain disorders die on average 25 years earlier. We are concerned 'a high rate of complete disconnection from any work or education.' We are concerned 'the average rate of pay was not adequate to support independent living.' 'Social isolation is more pronounced than those with other types of disabilities and 'have a negative effect.' There is 'limited knowledge base regarding the needs of adults.' There is a need to address 'the needs of those on the more severely-affected end of the autism spectrum.' Engaging families and individuals with autism is critical to understand these needs. Research is needed in medical areas and there is 'limited understanding of co-occurring health conditions.' Research is needed on 'long-term outcomes associated with interventions.' We agree future initiatives should include 'partnerships between academic researchers and state, local and private service providers.' We would recommend collaboration with the PTIs, F2F HICs, and CILs. We agree 'Future efforts will need to address the needs of the ASD population across the lifespan. Much of the effort to develop treatments to date has focused on children, yet 'it is possible that the number of adults with ASD may be much larger than the number of children with ASD.' We hear from families that once their child ages out of educational entitlement, services drop as they are based on much stricter eligibility requirements and much more limited funding.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;;;;Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jennifer Burke, parent	housing transportation vocational and recreation training and opportunities transition Priorities: -services for all ages, including adults Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Michele Hays	Quality of life across the lifespan is the most critical issue; we need to know what autism looks like and how to support it as development occurs. Job coaches and career counseling that allows ASD individuals to bypass parts of the job hunt that involve their weaknesses (e.g. interviewing) but allow them to use their talents.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sandra Rogers	Re-evaluate campus based models. Community living can be a wonderful experience for many individuals, however, it is not appropriate nor is it preferred for all individuals. Many clients enjoy having a community available to them- and prefer to live in a campus setting. They are also safer and are able to have more freedoms on a campus setting vs a community setting. Especially considering many communities are not very welcoming for a special needs population and are often contentious and impolite to the individuals and their care givers.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options
Joy Spencer, Parent and Director of local support group	Having run both a parent support group for 10 years and an adult group for 8 years, I find that those individuals who are not labeled as "severe" more often than not fall through the cracks when it comes to services available and qualifying for those services. (These individuals are labeled "Mild Autism", "Level 1 Autism" or previously used "Asperger Syndrome", "High Functioning Autism", or "PDD-NOS". They are doomed to live in poverty with no help rather than being given a "hand up" that could make them a contributing member to society with regards to employment, taxes, and more! Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Dr. C. E. Platt, Autistic	I am 63 years old. Before I would state desired services, I would like to see research on co-morbidities and health for autistic adults and autistic women. We don't know anything about autism; how can we prioritize adult services yet? I think the future will hold lots of new services for aging boomers which will be usable by autistic adults if they are not precluded. Health tools are frequently useful across multiple populations - not just the one the tool was developed for.Themes Addressed: Focus should be on early intervention or developing effective treatments; adults/lifespan are not a research priority; Research and services to improve health, medical care, safety and quality of life across the lifespan
Rita Pospisil, West Platte RII	I truly believe that if services and training were provided for preschool children through elementary, children with high functioning ASD would not need the transition services, however, those with lower cognitive abilities need to receive services for transitioning from one stage of life to the next, they require the vocational training and community integration throughout their school years. Provision of adult services and aging would be next. The idea of financial planning services and education is required for those with cognitive ability to understand those issues, but financial services may need to be planned or set up for those unable to understand the concept of money, paying bills, buying groceries, etc. In these cases a caregiver will need to be provided to take care of these issues. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Eileen Nicole Simon, conradsimon.org	My son is 53, and for him the future is here, and it is the abyss. The community group home system in Massachusetts has completely failed him. The group home mess was recently well described in the Boston Globe. Over the past year my son has run away from his group home three times. He goes from hospital to hospital, but because of his autism does not know how to ask for help. Help is only available to those who are suicidal or at risk of hurting others. My son is simply discharged out on his own. The police are the only people advocating for my son to get help, and I am especially appreciative of the police in Randolph and Boston Massachusetts, as well as the state police at Logan Airport. We have no family history of diabetes, but because of all the poisonous psych meds my son has been given over the years, he now suffers from "metabolic syndrome." The hospitals (so quick to discharge him to the streets) ignore his worsening physical condition, especially his high blood sugar. How is he supposed to manage his health problems as a homeless person out on the streets? Lifespan care is a disgrace. It must be addressed immediately, and not just left for the newspapers to report on. Themes Addressed: Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Anonymous	transition community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD
Angela Gardner	As the IACC is well aware, the fastest group of individuals with ASD is adults. Currently, adults with ASD and their families are experiencing what is called a "services cliff". When a individual with autism is 21 years old and completes high school most if not all the support services they receive ends. The burden falls on the families to find services to compensate for the ones that where lost and they are very hard to find. There are not enough post-secondary educational programs, vocational training programs, and other home and community based services and supports for adults with ASD. This needs immediate attention. The social and human services sector has not adequately prepared for what happens once a child with ASD becomes an adult. Our elected officials are also not aware of what the needs of adults with ASD are and the most effective ways to support them. This is a result of years and years of singular focus on the medical and scientific causes of ASD there was not much attention given to how to best support the needs of individuals with autism throughout the lifespan. There needs to be services available now! So many families are struggling and so many individuals with ASD's progress in life is being stalled due to a lack of available resources. The focus instead should be on how to support individuals with ASD living the best quality of life they can throughout the lifespan.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I consider what is most important priorities and gaps in research, services, and policy issues regarding health and educational equity, transition to adulthood, inclusive of vocational training, employment housing, financial planing and community integration the lack of lifespan services that are cultural and linguistic competent and responsive to the growing diverse, international, asylee, refugee and immigrant communities across our nation. We need more research, policy and practice to focus on the experiences and voices, stories, of those directly impacted. Again, we must include and to hold space for diverse families perspectives, and influence in all that we do, and what we do in the areas aforementioned are based on the axis of services, opportunities and supports are solely for, with and by them. I consider the most important research priorities, policy issues and gaps in co-occurring conditions in ASD are the social determinants of health and well being for diverse children, youth, adults, families and communities. I consider that there are marked gaps in local, state and federal policy and practice in providing effective, innovative, progressive and participatory life span services, opportunities and supports that increase the quality of life for those impacted with autism spectrum disorders and co-occurring conditions, such as mental health diagnosis and special health care needs. Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lisa Ackerman, TACA	1) First responder training for individuals with autism 2) Pediatrician and primary care physician training 3) Plan for adults ' what happens when the bus stops coming? Parents become full-time caretakers and have to quit working because there are no programs in place for the affected, so we go from having one person on government assistance to two, then add isolation and it becomes a recipe for despair. While the long-term goal is to create employment for most, it's not feasible for all, especially in the short-term. We need appropriate 'adult day care' and other life skills opportunities for our adults when employment opportunities are not available. 4) Educate and expand the Adult Vocational Rehabilitation Program Many families are unaware of currently available programs for adults. We need to scale this program up to educate families about its existence and prepare for the additional children who will become adults. A large point to consider: adults will not be able to work if they don't receive the necessary treatment and therapies early on at suspicion or time of diagnosis. This plan needs to accommodate all areas of ability and disability. 5) Continue vigorous enforcement and education of Olmstead Housing Act There are tens of thousands on wait lists for help in the area of housing. We are very close to two critical tipping points: children aging out of support and aging parents. A special task force is needed to identify the needs. 1) State services are not consistent. We need consistent service offering for early intervention, school aged and adult services. Then of course, funding for the standards. 2) Utilize existing non profits to educate and support families. 3) Move on supporting Avontes law thru the bill process ' we need a push from the IACC to finalize this important wandering legislation. 4) Work with existing adult programming for the elderly, Alzheimers models and replicate meeting autism unique needs. 5) Modify and expand the Autism Treatment Network to have the American Academy of Pediatrics for autism standards of care FOLLOWED and covered by INSURANCE. Only two do this well: Massachusetts and Arkansas. The rest need to follow the best and only be funded if they follow best practices. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;Improve access to diagnosis for adolescents and adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Theresa Mason	Lawmakers making decisions that affect our communities causing more stress and concern than elevating it. My example is transportation which is a huge, terrible problem to begin with. Now since the Fed government felt that our Board was "making money" by providing transportation services, they had to be moved to a separate provider. Not good in the least. Fact #1 the board was not making any money, they were (and still are in fact) covering costs that the initial waiver does not (and did not cover). Fact #2 There is not back up when the service does not transport. Fact #3 There is not an accountability factor in place for when they are not timely. Fact #4 When other transportation services were asked about bidding on coming into the community, the overwhelming response was thank you but no, we cannot afford to provide services. Finally, it should be pointed out that public transportation is not available in the community and that factor was not taken into consideration when the decision was made I am sure. Not to mention that this causes trepidation for the ASD person and can cause them to discontinue employment. When pertaining to older spectrum people, wanting ASD people to be involved with "community based" jobs without the proper guidance or support, is a major concern and there are areas that lack any support services available at all. Along those lines, the cost associated with services continuing and waivers, etc.. are all either lacking or confusing. Each city, county & state have different availability and with all the different aspects, more and more people get lost in the shuffle instead of helped. What happens when Medicaid is not adjusted to pay for the services and overtime cannot be paid? ASD adults that do qualify for follow alongs, monitors and assistance with ADLs are going to lose providers because the funding is not there. Another issue is Vocational Rehab having limitations that the ASD person cannot be accommodated for. Telling people that because fast food and nursing homes have quite a few job openings does no good for people with sensory overload to smell, sound and touch. For my experience, I had to have the sensory added by the tester to the report for vocational services as there was not a spot available for the doctor to report these issues. Would it not be prudent to be aware of sensory issues prior to attempting job placement?Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Carol Schoder Kotas	This should be the biggest priority. How will those who have aged out of educational programs spend their days, how will they be integrated into the community, where will they live, how can supported employment be provided. Still far too many young adults with ASD sit at home with parents once they have aged out of school, with only people who are very service-savvy and "connected" being able to cobble together a piecemeal program for their child. There is very little in the way of creative thinking in this regard. We are functioning in a very old-fashioned system that needs to be rehauled immediately and funded fully. Basically a continuation of the last question. Long term, where will our children live, work, play, age in place? There are some small programs, some large programs, but none seem to be very person-centered or innovative. The lack of funding and staffing shortages is at a critical point. Focus needs to be on more collaboration, sharing of successes and failures and finding better ways and more choices for families. Long term, where will our children live, work, play, age in place? There are some small programs, some large programs, but none seem to be very person-centered or innovative. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD;Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Employment, self reliance. These children will become homeless list adults .. Our society will collapse Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Priorities: 1. affordable health care coverage for all ASD services including social/communication interventions. (high deductible health care plans prevent families from pursuing treatments) 2. state educational agencies are fudging the numbers on students with ASDs; the majority are not legitimate authorities in this field and beholden to DPIs that cut funding for special ed 3. Make Universal Design for Learning mandatory in all public schools with an emphasis on CASEL and acceptance of neurodiversity. 4. Mandatory education of police about ASDs and other mental health issues. Their training should include psychiatric hospital rotations. 5. For adults, please read about the ASPIRE program in the Scientific American article by Jennifer Richler, Autism Grows Up (http://www.scientificamerican.com/article/autism-grows-up/) Parents must decide with the help of autism medical providers what services best meet the needs of their child. Knowledgeable educators who are legitimate authorities in teaching children with autism are next. At the May 3, 2014 Wisconsin Rapids conference: Endless Possibilities for Children with Learning Disabilities: A Collaborative Effort of WI FACETS, WSPEI and DPI , Patrick Schwartz, PhD, http://www.patrickschwarz.com/ was the keynote speaker. He presented the following National Statistics about Education: 45% of American students do not go to college; 95% of American students with disabilities do not go to college; over 75% of people with disabilities are unemployed; and over 90% of people with autism are unemployed. It is time to end the 21st century warehousing of ASD children and other disabled from pre-K through grade 12. Hard skills get you hired and soft skills get you fired.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Balvinder Ghag	Transition at all ages Health and quality of life across the life spanThemes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan
Jennifer Keller	Having choices of where to live for adults. I need a payee workshop- I wonder if people know how much time and frustration is involved without compensation . I keep making mistakes that hurt my brother . Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
MaryAnna Dunn	Adult services. On graduation from high school, families have to fight for services and there are never enough. In our state, the expectation is that families will care for their children with autism until they are too old to do so. This is a horrible plan. It encourages dependence, not independence. It places unbelievable stress on families, more than anyone who has not lived with this can possibly understand. And family members are not skilled trained service providers. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy;Need for a larger, better trained and compensated workforce for adults with ASD
Melanie Cregger	One of the most important issues is making sure that students/adults are prepared for life after high school and there are supports in place for them once they transition into the community or to other service providers. Provide more supported employment environments for those with behavioral issues (severe behaviors). There is a lack of funding for 1:1 services once students transition out of school. Some students need that additional support. It's hard to find resources and agencies for these students to work once they transition out of the school system. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	transition and adult services, vocational training, financial planning, housing and community integration Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Identification of vocational strengths and barriers to employability, and vocational training. Vocational assessment early in the process to identify needs and supports for employability. Workforce development, identification of appropriate and supportive work environments, and matching persons with ASD with jobs where they will most likely find vocational success.Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD;;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Susan bernard	We need services that covers All ranges of kids high to low functioning job placement and support in the community as well as sheltered workshops for those to fragile for functioning in the community who would be taken advantage of in the real worldThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	We have one more year before we have to transition to the "real world" so I only have had a tiny bit of interaction with services in the community. What interaction I have had does not bode well for the future. For example - my child does not drive. There is a bus system available in my county for people with special needs. According to their website, they have only one requirement to be met in order to purchase tickets to use this service: household income. It's just me and my 3 kids. I make enough to enable us to have a home with a modest mortgage, one vehicle with a modest loan on it, and have enough left over to provide food, clothing, and the other bare necessities. Things are tight, but we do not require public assistance in order to survive. But because of my salary (in the $60,000 range), according to the bus website, we would need to be a household of 7 (not 4) in order to qualify for services. So it appears that what my son can look forward to when asking for services after high school to help him succeed in life (help with getting and keeping a job, transportation, etc.) is that his Mom makes too much money to let him qualify for help with those services, but not enough to be able to pay for those services on her salary. Most important for people with autism after high school: 1. Safe communities to live in (i.e. apartment complexes that have someone available to help if needed - remind to take medicine or simply be available to give advice if someone doesn't know how to handle a situation). 2. Open up services so the middle class working poor - those who make enough to survive, but not enough to pay for services on their own - are able to get life skills services (i.e. employment help) for their children without going bankrupt or having to sell their house. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	I think this starts in early education. Educators and school systems have an awareness of autism but they are not informed, prepared or educated enough themselves to even request the resources necessary to support a student with autism in the least restrictive and most appropriate environment. This needs to be provided for both Special education and Regular education teachers. The IEP's look identical to each other and often don't include technological advancements for speech/communication. Teachers are not prepared or supported to implement use of simple technology (apple products) to provide a crossover support from home to school. At least iphone and ipad tech is somewhat familiar to most everyone, provide training in educational setting to use various apps to support communication, integration, independence in sequence tasks, changing ritualistic behaviors, identifying them before they become a necessary step. etc. The uninformed parent goes along with it to keep their child "safe" but then when they age out of school, the restrictive techniques or manipulative rein forcers cannot be continued/provided in a vocational or work environment. I think if screening/diagnosis occurs early and educational providers are educated and given the resources to support families in developing life skills and quality of life and integration for their children with autism, it will empower and promote preparedness for the lifespan.Themes Addressed: Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.);Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Bonnie Hawkins, Parent	There is not much available in this area. I started a support group for parents in our community, STAR (support team for autism resources) We have one whose child is 18. She is trying to see where to go from here. Once they age out of school....then what?Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD
Leslie, Maryk	People do not die from Autism; research needs to be at light speed to help individuals with ASD possibly reach their potential. There will be a large population utilizing services long term that the govt & private sector have not planned or budgeted for. Housing, job training, etc. More services for individuals who age out of school & local govt benefits. Information & assistance with transition from youth to adult services & benefits.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Rosanna Armendariz, Autism Community Network of El Paso	Where I live in El Paso, Texas, there are little to no adult services. After they age out of the school system, most adults with autism sit around the house watching TV or playing video games. There is no adult housing and those unable to take care of themselves and who don't have family to take care of them are sent to the state institution. The majority of adults with autism are unemployed. This needs to change. In addition, we need to improve our public transportation system so those unable to drive can be more independent. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Amie Nicole	The services and community support for children turning into "adults" is ghastly. We have an immense problem on our hands when this epidemic, this 1 in 48 boys turn into men. Better get to work on prevention. Prevention is possible. But first you have to admit to yourselves the cause(s) that us parents have been screaming about for decades. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults
Eugenia Bednar	My son is stuck in a rut and won't learn or expand and it is hard since he doesn't drive and all he wants to do is hang out with certain people that get him into legal trouble. It would be nice if there was a way I could get help in figuring out how to introduce him to other hobbies and activities on a very fixed income and limited transportation. My son requires an apartment building setting with his own apartment, but a building that has a security guard that monitors who comes in and out because he has been robbed and beaten in his own apartment because he went down and let the guys in. The apartment building had a camera survelliance system but it still did no good. My son does not like living here at home and wnats his own apartment but I can't trust him on his own because he gets taken advantage of easily. An apartment building with a security guard 24/7 might be a solution.Themes Addressed: Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous, Parent	1. Transition services that extend beyond age 21. 2. Affordable and safe long term housing options. 3. Transportation issues. 4. Case Management 5. Vocational training/employment support We have experienced a gross inadequacy in availability of post hospitalization therapeutic services for young adults on the spectrum who have been hospitalized for issues of safety and aggression. I would strongly recommend that funding be allocated for programs that can provide either intensive outpatient treatment or short term residential treatment that is specifically geared to educating people with autism in the areas of emotional regulation, managing anxiety and safety. We, and other families like ours, live in daily fear that our child will be overcome with anxiety when there is a natural transition or life change and will unintentionally cause harm or be harmed by someone who does not understand the behavior. There is a need for readily available case management services for adults, access to adult autism waiver support that should be provided naturally without a waiting period as a person transitions from school based (IDEA) support services to adult services. We need support that is not available or that is unattainable because of long waiting periods. Families with young adults on the autism spectrum are frustrated and drowning as they try to help their children navigate the adult world. Transition services for young adults on the spectrum, should extend past the age of 21 and be reimbursed through primary insurance and medicaid. There are not enough transition services to adequately provide the education needed to help these young people learn skills to secure competitive employment and live independently. Once they age out of the educational system, many are left floundering with irregular schedules and minimized social opportunities. Transportation is an issue that is problematic for these young people. Driving can be dangerous for them because of issues with attention, anxiety and other challenges. Access to public transportation is difficult for people living in suburban areas. There is a need for affordable and safe supported long term housing options for people with autism who are not intellectually disabled. We need services to help these young people learn how to manage in the adult world so that they can contribute to our society in a way that is meaningful and productive.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need assistance for adults with autism and their families in navigating available adult services; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Alexander Frazier, Director, Autistic Reality	It is important to realize that a huge population of autistic adults exists in today's society, and has always existed since the beginning of time. One of the biggest problems with lifespan issues today is the common misconception that autism only affects children. This is just false. To better help of autistic adults, life skills training is essential. Autistic Reality is of the firm opinion that life skills should be required learning for every single high school student. Everyone, not just autistic individuals, needs to know how to manage finances, rent an apartment, find a job, and deal with professional interactions. In addition, specialized life skills services need to be available to the autistic population to help the autistic population better understand how to navigate the world around them. In addition, non-autistic individuals need to be better trained on accepting people who are not like themselves, and understanding how diversity of all kinds is only natural inhumanity. Employers need to be much more willing to hire autistic individuals, whether or not they identify as autistic in their application or workplace. Social clubs and common interest groups with bylaws need to include sections of procedure relating to those with disabilities, both visible and invisible. They also need to enforce these bylaws. Finally, organizations that exist to help the disabled need to streamline their services, and be easier to work with. When diagnosing and screening, treating the individual who is being diagnosed and screened as a human being worthy of respect and dignity is paramount. Autistic individuals are not lab rats. Also very important during diagnosis and screening is not to treat autism as a problem or a defect. If you treat diagnosis and screening as if you are looking for a sickness or disease, then you are attaching unnecessary stigma to both the condition and the individual being screened and diagnosed. Autism is a form of diversity, not a sickness and not a disease. Autism does change the way that individuals act and think, but it is not a defect if properly accommodated and/or perceived. If you are a parent and/or a guardian suspect that autism must be an issue, then observe, check the sources, and check with a medical professional who will put your child's needs first. Please make sure that your child has input and understands what is going on. Please steer away from Autism Speaks, as they are a eugenic-minded apologist group that wants to see autism gone and does not believe that the opinions of autistic individuals hold valid weight in the world. Please also steer away from the Autistic Self Advocacy Network, as they often use radical methods such as cyber bullying and character assassination if their very specific, often incorrect mindset is not met. Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers;Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Bruce Hall, Bruce Hall Photography	At present the future for adult on the autism spectrum / with I/DD is grim and getting worse by the day. We need lifespan options for housing, services and supports, NOT limits to choice as proposed in the CMS Final rule. Alleged self advocates and many disability rights advocates do not speak for my sons or may family. The idea of self determination sound good on it's face, but when you can't clean yourself after using the bathroom, are an elopement risk, are self injurious with seizure disorder and have autism and intellectual disability living freely in the city is not an option. For so many the issues are about SAFETY as well as medical concerns. Former CMS staffer Nancy Thaler has been blunt about the new rules being about containing costs, and sustainability of the system. It's all about money and power, and limiting CHOICE. All housing options should be explored and encouraged. Many of the options could be cost effective. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Services and research should take into account the perspective and choices of adults and their families/caregivers;;;Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Tammy G Harrison, Parent of ASD	transitioning into adulthood, vocational training with subsequent employment, Life Skills.Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
T	ASD adults are often cut off from resources when they graduate from high school. We need more work programs and community living facilities for the adults. Police departments need further training on how to identify people on the spectrum so that they are not unnecessarily arrested or shot. Themes Addressed: Improve the quality, accessibility of housing options;;;Need for a larger, better trained and compensated workforce for adults with ASD;Research and services to improve health, medical care, safety and quality of life across the lifespan;
Linda and Chuck Yanikoski, SAGE Crossing Foundation founder and former president respectively	Farm-based programs are particularly beneficial for people with autism. Reasons include the cyclical nature of farm work, the combination of repetition and variety, the natural inclusion of movement and exercise, the sense of purpose that results from pursuing an activity from preparing ground to eating the produce, and the presence of healthful rather than irritating or even dangerous stimuli. But program start-ups are expensive. If the government could sponsor grants or loans to help farm programs launch, people on the spectrum could be served better, and also be gainfully employed. (One measure of farm programs' success is that participants usually are able to have their medications reduced substantially.) Second, Medicaid regulations that stringently define and reject 'institutions' while promoting integration with community serve people with autism poorly. The hallmark of autism is a significant degree of disability in socialization. Requiring people with this disability to integrate with the community according to inflexible rules is to force them into failure. It is a cruel and oppressive policy when applied to this population. These rules need to be made more flexible. Third, there is a small but growing need for services for elderly people with autism. From what we hear, people with autism are fitting poorly into care facilities for the elderly. This is an issue the government should study and for which ideas should be solicited. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services and trainingThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lisa Falke, Commonwealth Autism	There are gaps in the research on effective models of adult service delivery; there is little research on factors effecting perceived quality of life for individuals with autism across the lifespan or especially in adulthood service access for adults with autism; Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Gene Bensinger	Employment initiatives focused on competitive, specialized and stable work for people with autism must be increased rapidly and dramatically to offer individuals with autism a path to work. However, program rules, regulations, policies, and systems must not create collateral damage among people with autism who are unable or unwilling to pursue competitive employment. Employment opportunities requiring individuals with autism to directly compete with typical individuals for compensation on an ongoing basis may be inappropriate for many, depending on their individual circumstances. The creation of a new, large scale, flexible, adult focused autism service infrastructure must be developed and based on individual consumer, not regulator, choice. Multiple agency and government sponsored tax incentives, attractive financing (including guarantees and grants), and zoning reforms should be promoted and replace the current approach of adopting a scale challenged and limited menu of funding eligible service models. The creation of a transparent and consistent national system of consumer accessible service provider report cards, administered by an enhanced inspection and oversight body (similar to the UK system) must be put in place. A national certification system focused on developing a career path for support workers and professionals should be developed.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	As we all know, a veritable cliff after 21 in so many ways -- starting with education. Education is critical and needs to be lifelong, with daily living and vocational skills training and other instruction that can enhance the options, success and experience of integrated community living and employment for those with autism as well as their families, co-workers, community partners, etc. Today we are very fortunate to have the fruits of so many's labors, the agencies and organizations that have launched through their and others' efforts and that continue to support those with autism. That said, as a parent of a young man with autism in 2016, and with an interest in helping him become more independent, I offer the following comments, concerns and questions: my son does not currently receive any vocational training or guidance on skills development, believe a less-warehoused life is possible and desirable, would like to see an overhaul of the management of his medical needs, believe some greater sense of accountability, communication overall -- internally and with the outside world is in order, etc., etc. Where and how to start on this mission that affects my family and so many others??Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Again, services that automatically kick in for students as they graduate from high school. Advocacy is a huge need, particularly in highly challenged communities. Many estimates indicate that over 90% of people diagnosed with ASD are unemployed or underemployed. Where is the funding for state level services to ensure that we graduate tax payers and community participants? We need a way to link adults to services when their families are either indifferent or looking to benefit from that monthly check. Like the "child find" we have for young children. Assistance for starting small business enterprises specifically to employ individuals with disabilities.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Very much here in Illinois, but also elsewhere, there's a serious shortage of residential opportunities. In IL, there are plenty of parents in their 70's, 80's, and older with an adult child with developmental disabilities living with them. This is a big mess. The parents are not going to outlive these kids, and it's a matter of time before these folks become a big portion of the homeless problem. Promote more housing, and more innovative housing ideas!!! Find best practices throughout the country, including job development and coaching, and residential ideas. Research on techniques, broken down by sub-categories within ASD. Not all ASD individuals are alike. Research on learning social skills and communication are very important. Find best practices throughout the country, including job development and coaching, and residential ideas.Themes Addressed: Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; esearch, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cheryl	I think this area should start to take priority over other areas. Particularly looking at transition, housing, and employment for adults.Themes Addressed: Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
In's Kuperschmit, Esq. and Janeen Steel, Esq. , Learning Rights Law Center	Learning Rights finds that transition planning for students with ASD often does not fully address their needs as emerging adults. These service gaps should be addressed in the IACC plan. For example, very few transition plans for students with ASD include community services experiences and paid or volunteer work experiences. Without these two components, students with ASD will likely struggle to adjust to life as productive working adults. In addition, there exist very few community organizations or programs that can assist students with ASD adjust to work responsibilities. Opportunities for higher education and independent living are often limited as well. Through Learning Rights' caseload we often see these lapses as result of transition goals that are formed without a way to measure them. Enforcement mechanisms for unmet goals are also oftentimes missing. Our clients complain that transition planning is often an afterthought and many times falls on them as they are deemed responsible for meeting their own goals. In addition to more information being disseminated to parents and schools about transition goals and planning, the IACC should ensure that schools have access to trainings on how to properly transition students with ASD into adulthood. An emphasis of these trainings should be on goal development and implementation. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Denise Rozell, Easter Seals	Easterseals recognizes that some adults with autism will have the necessary skills to independently get a job and live in the community; others will need additional support and assistance through therapies, job training or residential services. Unfortunately, such assistance for adults with autism often isn't available, and an individual's family is left to fill in this gap often taking on substantial financial obligation. The IACC needs to address: ' Increased access to screening and diagnosis; ' Additional research into evidence based practices which respect choice, quality of life, flexibility and independence including in housing, residential supports, employment, community integration, recreation, transportation and other long term services and supports; ' The availability of resources and information that empower individuals with autism with self-advocacy skills to plan and support independent lives; ' Increased funding for services. While EPSDT addresses the needs of children on Medicaid as an entitlement, adult services are often provided through Medicaid waivers which are limited in numbers of participants and eligibility. The Medicaid coverage gap and lack of insurance coverage for autism services for adults means even more adults with autism are not receiving services or are having to choose between housing and other home and community-based services and employment. Easterseals recommends more research on what services are necessary for adults with autism to live independently, to be employed in a vocation of their choosing, and supports necessary to navigate aging. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve access to diagnosis for adolescents and adults; Services and research should take into account the perspective and choices of adults and their families/caregivers; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Daphane Voltz, Advocate	there needs to be a multi-faceted support system of services for adults with easy access. It should include ongoing behavioral and mental health therapies, transition, training, housing, financial planning and assistance, and community integration. more research into autism across the life span, not just young children with the focus on diagnosis. Better training and information networking for emergency response officials.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	Without the treatments and therapies that my son should be receiving, I worry about him as an adult. He is thirteen now, so soon he will be entering that nasty world out there that will probably not accept him as a normal adult. He will have problems acclimating to his surroundings and for this, i worry. I think there should be socialization classed in schools for ALL children so those who are not affected with autism know how to relate to those who are so everyone can coexists peacefully and respectfully!Themes Addressed: Improve access to diagnosis for adolescents and adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Neil A Snyder, American Speech-Language-Hearing Association	Communication skills are important for transition to employment and in community integration. Speech-language services may be needed across the lifespan. Typically, these services are available through high-school but often end after graduation. It is critical that adults continue to have access to these speech and language services. Data show that 74% of individuals receive speech and language treatment through high school and only 9% receive those services after leaving high school (Shattuck.) Speech-language and vocational services for adults are inconsistent across states. Model state programs that address the needs of adult individuals with ASD should be replicated and funded nationwide. b. Measures designed to examine an individuals' engagement in social and community activities (i.e., Participation as defined by the ICF) across the developmental stages are especially needed to track progress from early childhood through adulthood. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lynda Domina	Many states have waiting lists for services. This is destructive to maintaining independence. My 24 yr old has been on a waiting list for services for 3 yrs despite being severely disabled with autism and many other disabilites. He has lost valuable skills needed to work within the community and now with sheltered work being cut I fear he will never be able to work again. He worked through the high school and adult programs, loved it, but needed guidance. This has also impacted self esteem, caused depression and behavior. No money is saved when services are denied.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Becca Lory	ALL!!!!!!!!!!!!!! Please help us to plan and provide for our growing adult and aging population. Service systems, access and utilization along with community inclusion are the biggest impactors on the quality of life of individuals in the spectrum across challenge levels and age groupsThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD;Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;
Allan D. Hollander	A huge priority here is to do a prevalence survey of autism in the general adult population. There are many adults who are too old to have been diagnosed as a child under current diagnostic criteria. How is this subpopulation doing overall? What are their needs? What are common mental health issues? What physical health issues become manifest as this population ages? Longitudinal studies from childhood on are methodologically nice, but they do nothing address the needs today of autistic people who are middle-aged or older. On a different note, we need research into appropriate accomodations for autistic people under the ADA in general society, especially workplaces. An example of this would be environmental design research aimed at crafting policies for sensory-friendly environments. - Alleviating the general absence of services for adults. - Developing a corps of mental health professionals with knowledge and understanding of the mental health issues and psychological difficulties faced by autistic adults.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Michael McWatters, Parent	We need a lot of research in this area. In particular, most resources go toward young children, but these children will grow to be adolescents, teens, and then adults. Most parents have no idea how their children will make this transition. Moreover, many young people with autism aren't given opportunities to make the most of their lives. This is an area in dire need of more focus.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Mark Justin Draycott, Parent of a person diagnosed	See the response to the previous question. Much greater emphasis should be placed on listening to persons with autism and using the information they provide to establish priorities and identify gaps in the areas of services, policy, and research. Emerging evidence clearly establishes that non-speaking autistics are almost certain to be highly perceptive, self-aware, and intelligent. Information and insights from persons within the ASD population should inform the development of services, policies and research of which they are the intended beneficiaries. Other areas of pressing importance are the allocation of resources to the development of employment and housing opportunities for autistic persons. Please see response to previous questions. Appropriate employment opportunities must be developed for persons with an ASD label. In order to develop and offer appropriate job opportunities, it is critical to accurately assess a person's competence and intelligence. Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers; Improve the quality, accessibility of housing options
Beth Malow, Vanderbilt University Medical Center	transition to adulthood in terms of medical care is critical -- while vocational training and the other areas above are very important, medical care has often been overlooked. We have a shortage of primary care physicians and specialists who are comfortable with and competent treating adults with autism.Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD;;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lesly Weiner, Parent, teacher	VACCINES CAN AND DO CAUSE AUTISM #Powertotheparents #Hearus #VAXXED Housing and services for this generation's exploding population of vaccine damaged people who are aging out of school now - again - Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Anonymous	Early intervention Education Independence Employment Housing These are all the things that a typically developing child needs to live a full and complete life Focus on EB practices to assist the individual with co-morbid behaviors The lack of qualified service providers impacts individuals for a lifetimeThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	there has been progress but seems like there is so much more work for the families to get the community to open their doors to consider someone on the spectrum as an employee. Need more PSA about the many benefits of hiring someone. The assaultive, anxiety/ depression behaviors becomes a tremendous barrier to success as an adult. Families get worn out and the individuals quality of life is diminished. As ASD population is getting older transitions from school to higher learning is difficult since there is no requirement for higher learning (community college or trade schools) to follow any kind of IEP. They must only comply with ADA. The person on the spectrum is not afforded the supports (behavioral) that they need to be successful in a higher education system. SO the priority is to continue to identify medication etc that will help them fit the norm. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	? Determine where the gaps happen and develop services and supports for transitions; it has been reported that when children age out, there is a dearth of needed resources to assist them in navigating systems. ? Support provider education on transitions from pediatric to adult practitioners. ? Support continued investment into supportive housing, employment and education to insure successful adult transitions. ? Continue to support strategies that promote family-to-family support and assistance with system navigation. ? Continue to support studies aimed at different needs across the life course ? Continue to support clinical trials ? Insure that parent/caregiver education for interventions is included ? Continue to support studies aimed at different needs across the life courseThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need assistance for adults with autism and their families in navigating available adult services
Anonymous	Vocational training and medical care (even primary care) are often not available or difficult to access. Many adults with ASD have amazing abilities which are often not utilized due to barriers. Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marie Arnold	Certainly as the population of those who are affected by autism and other related developmental challenges, age, there is a need to help families. If insurance does not provide, then what are families to do? I would say that the first importance is to locate cause of these conditions, as there IS a cause, which I feel is for sure environmental. Then, for those who need the help, provide tax benefits for those private groups who make themselves available for assistance to families. Thereby providing housing, education, community integration and a healthy environment in which to live.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Rosemary Heath, Assoc. for Metro-Area Autistic Children (Board member)	Delivery of services to autistic individuals thru age 21 is fairly well handled. The services available to young adults, however, is lacking. If an individual is not severely affected, there is little available. Most services are channeled thru Medicare/Medicaid and do not address the needs of those who need some vocational training and employment assistance. There is nearly no financial planning assistance for families unless it is thru Medicaid. This does not address the needs of those whose adult children do not qualify for Medicaid, or for whom it is not the best choice. Community integration seems geared towards the severely affected. Of course these are individuals who need the most help. However, community outreach is needed for autistic persons who are managing to hold down jobs and live independently or with family assistance. The cost of providing these services would be offset by the increased productivity of employable individuals and their participation in the community. Many autistic persons can participate to a significant degree in the workplace, given some supports. The number of autistic adults who have received at least a high school education is high enough that folding them into the workforce is desirable. Meaningful work opportunities need to be made available, along with training for supervisors to make the best use of the various talents autistic persons have.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Carol Fruscella, Parent and Legal Guardian	All the above should have been planned for when the IACC first formed! My son was DX as the One in 2500. We have little or nothing to offer him, now. What will be available for the One in 45 DX with Autism if the One in 2,500 adults born birth year 1991, MIGHT find housing AFTER the loss of their natural care provider? I believe in community inclusion. I think it is a very important piece for over all quality of life outcomes. With that being said... I also believe that when my son struggles at his 'sheltered workshop', sometimes needing an extra 20 minutes to try to walk to his break room, that the general population and workforce moves at such a pace that the time needed for my son to transition from place to place, not only makes him not employable... he also sets him up to failure and honestly mocking and teasing by members of society that have no understanding of Autism. My sons workshop is sheltered so my son can have safety and supports in place to be able to do as much as he can. With the current CMS changes in our state, I see no safe work environment at this time. So instead of 'inclusion', my only choice might be that once his workshops doors close... ( and his workshop is to be closed ) That will mean my son will NOT have the opportunity to be out of our home five days a week. My son senses no danger in the real world. He needs medical supports at times. What is needed for real world inclusion of others will remove my sons successful environment... and in return he will lose what little daily normal he looks forward to in his daily life. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Russell Goodman	Some autistics may not know what to do during unknown crises, ranging from the average illness to ignoring needs (they didn't realize they needed to pay more attention to). Further, we are looking at those we have successfully monitored into adulthood. Remember that there are plenty of people out there who are in need of "triage" -- they're "getting by", they "present well", but they're on the verges of collapse, because they're doing what everyone else around them is doing -- but with so much more trouble. Adult diagnosis is a very real need, and diagnosing an adult carries a cadre of problems: that the mind will need to adjust familiar patterns of presenting well... to new patterns where the person functions better (even if it does not present well). Many doctors are trepid to try to diagnose an adult, and many adults who may have it (without formal diagnosis) don't even know how to find the resources to get a diagnosis. Even so, there will be troubles with commute, timing, and other neuroses that come along with it -- offering cognitive behavioral therapies, and support groups in the local areas (social workers having better resources to find or locate) would help immensely, so that they do not feel 'alone' (which is scary, and many autistics live 'alone' up in their heads, so finding you're "not alone" helps). These steps are more preventative.Themes Addressed: Improve access to diagnosis for adolescents and adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Autistic people can have multiple physical health issues as well as mental health issues in addition to being autistic. Being autistic can mean that every new symptom is "Oh, that's just autism," instead of really finding out what's wrong. Then add in mental health like anxiety, and "Oh, it can't be that bad, it's all in your head, since you can talk about it, it's not really an issue. It's only anxiety. There's nothing *really* wrong." I think an idea that would help many people who don't currently receive any services is if there could be someone available to do a general, overall assessment of the items above i.e. housing, financial planning, community, just to see where things can be improved upon to get a better quality of life. For example, many autistic people are overqualified for jobs or work at jobs well below their job knowledge or capabilities. This can mean that income is much lower than it could be. But perhaps this job is a good fit. Meanwhile, rent keeps going up and up while income isn't. Perhaps renters assistance in the form of a stipend could be available so the autistic adult can continue living independently or in a preferred living situation. More service organizations should be welcoming of autistic adults. When autistic children see that autistic adults are talked down to, dismissed, ignored, and much worse, they can see that is what to expect when they themselves become adults. Also, just because an adult has never received services, doesn't mean that everything is fine. Autistic burnout is extremely common among autistic adults, as they "just try harder" for decades, to fit in, to be "indistinguishable from their peers," and that doesn't work. Even if organizations don't specifically help adults, they should be willing to at least talk to them and try to figure out solutions to the issues at hand. Just because some adult autistic people are articulate and can tell what their problems are, doesn't mean they can solve them by themselves. The researchers should listen to adult autistic people about how harmful ABA really is. Because those are the adults that the children growing up now will become. Many autistic adults and teenagers have PTSD directly from ABA. ABA teaches people to not *appear* to be autistic. It doesn't make them not autistic. And being autistic is just a way to be, not something that needs to be eliminated, as the only way to truly eliminate autism would be to screen genetically pre-birth, and abort. Killing is the only way to eliminate autism. Autistic people have a rough go of it sometimes. It doesn't mean that their lives should be snuffed out before beginning. Get to know adult autistics and listen to them. Regarding autistic children: when are they ever going to talk? Regarding autistic adults: why don't they ever shut up; they're not like my child. Wrong. They're exactly like your child. Also, if you wouldn't subject your non-autistic child to the treatment, don't subject your autistic child to the treatment.Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services;;Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous, The Childhood League Center	Very few programs focus on supporting people with autism and their families across the lifespan. The sources of funding decrease as children get older and drop off dramatically once they become adults. The right supports and intensive intervention helps children gain capacities so that they can be functional, productive and possibly independent adult members of society. The intensive intervention must promote self-regulation, social-emotional connections, effective communication, purposeful initiative, creativity, logical but flexible thinking, critical thinking and problem solving, and self-reflective capacities; so that the person with autism will be able to navigate the adult world. This process begins with early identification and early intensive intervention, as a child grows their needs change but intensive intervention continues to be crucial for many of them. In addition, many children are not identified until after the age of 3, and miss the benefits of early intensive intervention. These children then receive intervention at school that lacks the appropriate level of intensity and the right focus. It is not only in the best interest of these children and families to receive the right type of intervention as early as possible, it is also in the best interest of society.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;; Research and services to improve health, medical care, safety and quality of life across the lifespan
Mary Parnell, Parent	This I feel is the least developed and funded part. How will my child stay safe and support themselves into adulthood. She is bright but has many challenges she has to over come each day. There is a huge gap in services, my daughter was diagnosed late and I can't seem to find a path for her to help her become an independent adult. service systems and employment with support. social supports needed to help individuals have happy and fulfilled lives esearch work force development, and social supports needed to help individuals have happy and fulfilled livesThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;;Need assistance for adults with autism and their families in navigating available adult services; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Gilda M Sanchez	Adult services, housing, employment and community integration.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Deborah D'Arcy	Respectful and appropriate housing options are of utmost importance. Adults with Autism are being deprived of their rights to choose the environment in which they wish to live and for which they are best suited by regulations limiting them to small suburban/urban group homes. For many adults with autism that is an inappropriate and isolating placement. Independent/Assited living facilities, farms and intentional communities are all choices open to the general population and are sometimes the best home for those with Autism as well. A typical community does not provide social opportunities for people with moderate to severe autism whose interactions must be facilitated and is often severely limiting and dangerous for those who are unable to negotiate traffic unaided. Regulations must be revised to establish and provide for a wide spectrum of residential options appropriate for the needs of each individual. Services for adults are funded through an outmoded Byzantine chain of public and private agencies and providers, each taking their cut, diminishing the impact of our tax dollars. Can we examine a more streamlined system wherein the funds are transferred directly to the service providers without the intermediaries? Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve the quality, accessibility of housing options
Barbara S. Delsack, MCPS; CCS, Inc.;Independent consultant	TRANSITION preparation including 1. establishing a functional communication system that goes beyond making choices and answering yes/no questions. We have the tools to teach it, why aren't we? 2. looking at adult services and realizing our folks still have a lot of potential and a lot to learn and the adult services agencies have the unique opportunity of teaching in real-life situations that are the ideal for authentic learning and experiences. I am out and about for my position and regularly run into students, present and past, who are in the community doing nothing. An example, on any given Friday you can go into Lake Forest Mall Eatery and see at a minimum 40 adults with special needs with their support staff. maybe eating lunch, often doing nothing. Staff regularly not talking to or encouraging interactions. Or on a late afternoon go take a walk around Rio in Gaithersburg and see, again, at minimum 4 or 5 groups of two autistic adults and their staff. Maybe walking, often sitting with staff on their cell phones and clients stimming. We need to look at how to make our autistic peoples' lives meaningful and give then a quality of life that builds skills daily, exposes then to new things so rigidness cannot be cemented in their character but flexibility and resiliency is taught and encouraged. The students I worked with when they were 4 yrs of age and who are now the ages of 25-30 are markedly more ready neurologically to learn and can learn and ARE LEARNING faster than when they were young. Yet, once they leave the school setting the services they could now most benefit from are no longer available without a lot of challenges for families to get them paid for through DDA or their individual adult service providers. Yet, once they leave the school setting the services they could now most benefit from are no longer available without a lot of challenges for families to get them paid for through DDA or their individual adult service providers.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Catherine Camp Boyle, Autism Housing Pathways	We need data on both the percentage of the homeless who have autism and the percentage of autistics who are homeless. Data from the UK indicate people with autism are not only more likely to be homeless, but more likely to "live rough", i.e., on the streets, rather than in shelters. A failure to address the distinct needs of the homeless with autism makes it harder to bring them in off the street. Many face difficulty maintaining tenancy due to a poor understanding of the "hidden curriculum" of being a tenant, a neighbor, and a roommate. This can lead to eviction and possibly a need to go to housing court to get back into public housing. We need housing design that reduces environmental triggers that can lead to difficulty maintaining tenancy due to property damage or conflict with neighbors. Those who cannot tolerate a roommate or can only work part-time struggle to afford housing. We need to address the problems of those with severe sensory and initiation issues that cause them to self-isolate. Some of these people never leave their homes, yet are considered to be "in the community". Housing options that are designed to meet the needs of this sub-population might allow them to participate in activities more often, while facilitating interaction with the broader community on terms that are comfortable for those with ASD. This can lead to a richer life and richer personal relationships that are all but impossible in traditional housing. In addition to those outlined earlier, interactions of people with ASD with law enforcement need to be a top priority. These individuals are more likely to interact with law enforcement with more negative consequences. Assuming individuals even survive the encounter, prison should not be our default housing and adult services provider. This raises the related issue of the school-to-prison pipeline. Another issue is the lack of acute psychiatric beds for non-verbal individuals in crisis. Themes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Angela Lello, Autism Speaks	Further research is needed on the topics of the prior plan, including the differing trajectories of outcomes. Significant gaps in research, services & policies of adult services should be filled in order to meet the needs of adults with autism. The strategic plan should address all domains of adult living, including: transition services for youth; employment supports & services; housing & community living; recreational activity ,family & caregiver supports; safety resources for individuals, families & communities; healthcare services & providers and other needed supports that allow adults to live as independently as possibly in the community. The plan should also address the needs of aging adults with autism including lifelong needs that may change overtime. A better understanding is needed of the variables that contribute to poor transition outcomes for adults with autism and we must translate & apply findings from research that show positive outcomes. Recent federal policy initiatives have created new opportunities for cross-agency and stakeholder collaboration in the area of adult services and these opportunities should be leveraged for the benefit of our community. More understanding is needed to identify and expand evidence-based, successful models including models that prioritize work-based learning, individualized job-supports, and lifelong community supports and services responsive to the varied and individualized needs of the autism community.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Patrick Johnson, American Academy of Pediatrics	AAP would like to note that in the past few years there has been an increasing urgency to delve into research surrounding the transition of ASD children into adulthood, as it is currently limited and in dire need of updates. The Strategic Plan judiciously describes some of the challenges facing these patients: co-occurring mental health disorders, financial and familial stressors, and significant barriers to care. A multifaceted, coordinated treatment-effort would be required to properly care for these patients, involving educating high-schools, colleges, and employers about teenagers and adults with ASD. Additional vocational training programs could help support these patients financially, as significant amounts of adults with ASD remain unemployed (which affects their ability to receive medical treatment, as well). Increased investments in independent living arrangements could help ASD adults thrive psychologically and medically. There are currently only limited discussions surrounding potential guidelines and treatments that could assist in transferring care from pediatric to adult ASD specialists. If state or federal institutions are to provide service plans for adults with ASD (as they do for ASD children), further research must be conducted.Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Leigh Ann Davis, The Arc	Sexuality is an important piece of a person's well being, including those with autism. Education and training on sexuality, creating and maintaining romantic and other types of relationships and an understanding of consensual sex versus sexual abuse is critical. This type of education and support should be provided in public education settings, and in a way that persons with ASD can understand the information. Evidence-based curricula should be used to support people with ASD to explore their sexuality and create mutually satisfying relationships throughout their lives and have a family if they so choose. Themes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan
Renee Vogt	Priority must be given to: 1. Ensuring transition services for "coming of age" students. 2. Having services available for autistic individuals of all ages ( help finding gainful employment, support for mental health needs, life skills/independent living, etc. )Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research and services to improve health, medical care, safety and quality of life across the lifespan
Stephen Holtsbery	Community integration is more feasible for people with jobs and housing. Transitions are difficult for Autistic people all over the spectrum. Financial planning should start early and be supported by families, programs, social workers and employers.Continuous vocational training is really vital with frequent changes in technology. Recreation and exercise needs to be emphasized throughout lifespans. Allocating more resources to adults of all ages to support them finding and keeping jobs will be beneficial. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Alexander MacInnis, Stanford University	The seriously disabled children with ASD, as they become adults, they will need a broad range of services. Most fundamentally, they will need safe places to live when their parents can no longer care for them, staffed by individuals who truly care about them, with multiple levels of oversight to make sure this is always the case, and sufficient funding. That will be very expensive. Many but by no means all of these individuals will be suitable for vocational training, job placement, and to varying degrees normal integration into the community. Of course we should support all of that. But we must not lose sight of the very large number of seriously disabled individuals who simply cannot fend for themselves, could not live independently even if they had sufficient money, for whom no amount of acceptance could be sufficient, and who cannot explain what they need let alone argue that there is nothing wrong with them in the first place. Just imagine a future in which very large numbers of seriously disable adults with ASD have no way to take care of themselves, no where to go, and no one to take care of them. We can do better if we plan now. Since we currently have only very limited ability to treat such individuals sufficiently to gain independent living ability, we must start the hard work of planning for appropriate, and appropriately funded, services for what may be a very large number of disabled adults that these children will soon become.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD;;Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sherri L Kelly	I worry about housing and also employmemt that will engage my son and isn't just bagging groceries at the supermarket. Also, what services are available once my child ages out of school? Having choices where my son can safely live once my husband and I have passed away. Having choices where my son can safely live once my husband and I have passed away.Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services; Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Beth Clay	There are well identified gaps in each of these areas. Each is equally important. The priority becomes different for families based on where in the lifespan their affected family member is. One policy issue that has yet to be fully explored at the national level is how the church communities can better serve autism families including adults on the spectrum - if housing, respite care, early diagnosis, community integration and quality of life issues can be addressed through church-community programs.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
Sandra Marcus	My biggest concern is who will care for my grandsons when their parents are gone. Group homes are not the answer. Sheltered work shops are barely better than "slave labor" Who sitting on the committee wants this life for their child or grand child?Themes Addressed: Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Chitra Raman, Parent	The huge shortfall in housing for adults with autism, promoting awareness in the wider community including support staff and law enforcement, are issues that must be dealt with NOW as the first tsunami of adults with autism is already poised to hit, and will likely continue to swamp us in the foreseeable future given the climbing autism incidence rates -- stupidly ascribed to "better diagnosis" by vested interests in deep denial.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD;Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan
April Banerjee, People With Disabilities Foundation	Adults may not receive services due to laws that require evidence of a diagnosis before a certain age in order to receive government-funded services because autism tests and diagnoses were not common when these adults were children. E.g., PWDF client John Doe[1] was denied state-funded services because in adulthood he did not have evidence of an ASD diagnosis before the age cut-off. He eventually was approved for services in his mid-40s after PWDF arranged for him to get tested at a specialized clinic at the University of California San Francisco and made a huge effort to get him found eligible for funds for this population. The 2013 Strategic Plan (Objective 6.S.C) showed a paltry $56,000 was spent compared with the recommended budget of $8,400,000 for identifying these adults.[2] We particularly recommend that the 2016 Strategic Plan increase efforts to address the needs of undiagnosed and misdiagnosed adults. [1] See Doe v. Astrue, Case No. 3:09-CV-980 EMC (N.D. Cal. 2012) for information about reasonable accommodations based on communication that PWDF was able to obtain from the SSA for John Doe. [2] Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research '2013 Update, p. 90. April 2014. Employment and workplace integration are big concerns. AFAA reports ' [I]t is believed that while the vast majority of adults with autism want the opportunity to work, 80-90% of them are currently unemployed.'[1] PWDF provides specific resources[2] and training[3] in workplace accommodation. Community integration is also key. 'According to Peter Gerhardt, PhD, 'The problem is that society does have a very negative perception. This is a truly significant barrier to lives of inclusion and dignity for individuals with autism.' Increased public awareness is inextricably linked to the success of persons who have an [ASD]. Much has been done to educate the public about the effects of autism on children. However, as the average age of these children increases, so too, must the focus of their needs. The broader the understanding of the needs of adults with autism, the brighter their futures.'[4] [1] Advancing Futures for Adults with Autism, Core Issues ' Employment, available at http://www.afaa-us.org/core-issues [2] People With Disabilities Foundation, What We Do ' Education, available at http://www.pwdf.org/what-we-do/education/ [3] People With Disabilities Foundation, Online Store available at http://www.pwdf.org/category/online-store/ [4] Advancing Futures for Adults with Autism, Core Issues ' Community Integration, available at http://www.afaa-us.org/core-issues People With Disabilities Foundation (PWDF) notes that AFAA sees three specialized zones for concern for adult autism populations, and we agree with these areas of focus in order to promote independent and community living. Primary of these concerns is housing and residential support. AFAA reports that '500,000 children with an autism spectrum disorder will become adults over the next 10 years ' each with his/her own unique needs. Current public housing options are extremely limited due to deep-rooted constraints in financing.'[1] Stable housing is a key criteria for maintaining other human needs, including employment, health care, and community living. [1] Advancing Futures for Adults with Autism, Core Issues ' Housing and Residential Supports, available at http://www.afaa-us.org/core-issuesThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;Improve access to diagnosis for adolescents and adults; Improve community integration/inclusion, including social isolation and community education about ASD;;Improve the quality, accessibility of housing options
Anonymous	NOT ENOUGH FOR ALL ABOVE. Need more longitudinal research on quality of life. Create programs for housing and more independence and job exposure. Vocational aptitude testing and subsequent training as mandatory high school tracks for some students.Themes Addressed: Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Azuree Natice	All of your listed topics! Health and quality of life across the lifespan is vitally important to the wellbeing of autistic people and this area woefully underfunded and underserved. Aging is practically ignored and the focus is still almost exclusively on autistic children, who then are left to go off a cliff when they age out of supports and services. Financial planning, decent housing supports and adult services and almost totally lacking. Education, vocational training, and community integration that respects autistic people, supports inclusion to the greatest extent that works for each individual, and helps each to lead their best life -- no matter how different that life may seem to a typical person -- is desperately needed and desperately underfunded and lacking in attention and quality research. Please help us do more for all the autistic people -- children and adults -- that are here now, instead of continuing to focus attention and funding on chasing down a thousand more genetic associations. Lifespan Issues -- effective supports & services, from infancy through adulthood, that treat autistic people & their families with respect, do no harm to them, and help them to lead lives of dignity among the wider community. .... Funding and guidelines for professional development for those in the fields of health care, education, social services, and law enforcement -- so that modern research into the underlying neurology of autism and into how autistic people differ in their perception and experience of the world and their response to that can inform the way autistic people are treated by workers in these fields. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; mprove the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Julie Cadman, Healing Complex Kids	The future looks bleak from what I can see for adults with autism. Many of these children that are aging out of the system are not being taught to be independent. We need REAL programs that will help families and their children- programs that will allow them to become independent members of the community, able to both live independently and take care of themselves. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults
Angelique Higgins, parent	Gee whiz, since autism has always been with us and this is just better diagnosis, all those low functioning autism kids will just go where they always have, to all the gleaming high quality residential facilities where there are no waiting lists and the staff act with love and kindness and understanding and the doctors know just how to treat comorbid conditions. Where the police know how to handle autism people in the community, not just shoot at them. Where the employment an vocational training are already doing a great job. Oh, wait, that's the parallel universe where the IACC spin about autism matches its reality. In this universe, the numbers have been so relentlessly swept under the rug, the fear of investigating causation is so great, that the problem has exploded to a level where the services are going to take decades to catch up to the actual problem. Unless and until the true numbers are obtained along with levels of functionality and extent of comorbid conditions, none of #6 can be reliably planned. Implement a 50 state surveillance strategy with complete categorization of high vs. low functioning, including comorbid conditions, in order to be able to reliably plan for lifelong care. Themes Addressed: Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Idil Abdull	I think if you look at how little is spent on adults with autism - we have failed this population in employment , quality of life and housing as well as accessing their community resources. For example, CMS via state Medicaid agencies have thousands of wait list for waivers while they sit on millions. Minn is among them. Many waiver programs also don't cover physical activities for young children even though we know many kiddos with ASD are obese. I think the whole waiver system needs an upgrade - it seems to me those making decisions about waivers and Medicaid are clueless about autism including Minnesota. There are also not enough autism providers in most states which of course hinders quality of life. Finally, while most of these questions are good, I am hoping they can revised or at least updated to include emerging issues such as law enforcement and autism, wandering, nonverbal and expanding minority providers. I thank you all for all you do. We really appreciate all of your hard work and dedication. Thanks Idil - Somali autism momThemes Addressed: Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Heather Parsons, American Occupational Therapy Association	This question, question 4 and question 7 should be considered together. Treatments and service delivery should reflect the long term goals of the person and their family, should occur in the least restrictive environment, and should lead to maximum independence as an adult. With that in mind, we make the following recommendations: Transition skills must be built starting in the early years, in part through identification of strengths and interests. Soft work skills such as punctuality and dependability must be built as well as job performance skills. Occupational therapy assessment and supports can continue as individuals with autism develop and grow, and in consideration of transition to such future occupations for college, career, community integration. Specific occupations such as driving, money management, and caregiving emerge as the individual develops, and occupational therapy practitioners can modify activities and environments to support participation in these life skills, customized to the individual abilities, needs, and wants. Quality of life can be met through participation in daily activities and the development of routines that are both satisfying and enduring. Building friendships and leisure skills help to improve quality of life by increasing community engagement. Additionally there should be an emphasis on assessing and meeting mental health needs including emotional regulation, development of peer relationships, and self-advocacy abilities.Themes Addressed: Improve access to diagnosis for adolescents and adults; Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anna Frances, autistic 17 year old	Stress for anyone decreases their lifespan, and since stress is a major cause for autism, its causes need to be addressed. There needs to be awareness of autism in the community and the social flexibility for autistic people to participate in the community as much as they want. Free support for transition to adulthood (jobs, living arrangements, general life skills) and then ongoing support throughout life, both individually and in community settings. Government funding for a basic income guarantee (enough to live simply and sustainably, with the option to work if you are able), free healthcare that includes alternative treatments and functional medicine, and programs that support people in their personal, academic and work lives.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous, Autism Society of America	These comments are being submitted on behalf of the Autism Society of America. Many of the impending issues mentioned health and quality of life across the lifespan, aging, transition and adult services, including education are all major cornerstones for an individual with autism to succeed in life. The high numbers of ASD is staggering, and as individuals with autism grow from children into adults, they will need to learn skills that can allow them to be active participants in their communities. A recent report from Drexel University's Autism Institute has indicated that young adults with autism face significant challenges, which include unemployment, isolation, and lack of services. Based on what we know to be true and data, it is vital that individuals with autism if given the absolute best opportunities from the beginning as early intervention into their placement in IDEA, growing from elementary to middle school, to high school, transitioning into post-secondary education, employment, are ultimately able to live a full life driven by idea of 'presuming competence'. These comments are being submitted on behalf of the Autism Society of America. The Autism Society has identified two gaps in the current lifespan infrastructure: 1) Milestones to indicate achievement towards quality of life outcomes as an individual progresses through each life stage, and 2) A collaborative programmatic support structure that leverages the expertise of multiple community partners to provide individuals a comprehensive set of resources to achieve their individual goals as set forth in their person centered plan. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marcia Gray	We are in a time in which many of the factory and assembly line jobs that allowed a lot of high functioning people to have decent waged jobs that worked to their strengths with little training and didn't have a lot of dependence on their social skills are gone. Jobs now are much more dependent on the ability to communicate, compromise and get along with coworkers. Much of the social skills therapy is limited and under developed - leaving these folks especially vulnerable when they are attempting to navigate adulthood.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	' disability support and training programs for college and vocational programs. ' disability training and support services for employment. ' law enforcement training ' a resource to find out about available services and programs ' vocational programs and special college programs with disability support services. Many individuals with autism can be substantial contributing members of society if they have the supports to integrate them. ' Individuals with autism are often isolated in their homes, with little social opportunities. More should be done with social, recreational, and community integration, with review of model programs. ' There should be a resource for cities, counties and states, to review model programs in other states, and copy effective models. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Chuck Hartseil	I think the above topics capture critical issues. Again, transition into adulthood and outcomes for employment, living and recreation.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Maureen Durkin, University of Wisconsin-Madison	What are the most effective interventions and policies to promote inclusion and workforce participation of individuals with ASD?Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Lisa Falke	2. We need to care for those with autism throughout the lifespan and support their families through increased HCBS waivers, quality residential options, insurance coverage for therapies and treatments, vocational opportunities. For those who are capable we must incorporate more opportunities for higher education. 3. We must keep those with autism safe. Wandering prevention programs and tools must be made readily available. Training for police officers, daycare personnel, teachers, first responders and parents must be provided.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Community inclusion, more appropriate training and jobs for young adults. Giving them the opportunity to succeed and have access to jobs that can also have more promise.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Belinda Adams	Training for ALL first responders in how to understand and react to Autistic meltdown situations which they may come across or be asked to respond to. EXAMPLE: Today's incident in Florida in which policeman shot counselor who was trying to aid person with a disability.Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Carol	People with disabilities and the criminal justice system. It is becoming a big problem. Training is needed for those with disabilities, parents, law enforcement, prosecutors and judges. Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD;Research and services to improve health, medical care, safety and quality of life across the lifespan
Jennifer Kiney	Preparing young adults to grow independence and ability to work in their field of choice. How to get employers to see their value and embrace their individualism. Autistic adults do not need unskilled labor jobs as their strengths can be amazing. Study with companies that can benefit. Creating safe housing. Removing worry from parents about what will happen when I die? If emphasis is on the state being "responsible" then they need more funding. Wait lists are incredibly long and probably not even the way to go. Increase incentives and opportunities for private and public organizations to get involved.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Adult services and education are of the utmost importance. They need education their whole lives and services beyond 21. What are families to do when they cannot care for their children anymore?Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Long term and financial planning are a priority for research, services, and policy ; Improve transition services, and provide better assistance for young adults and their families during transitions
Mike , PASKERT	As our son ages out of the county system...it would be his quality of lifeThemes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan ; Improve transition services, and provide better assistance for young adults and their families during transitions
Marc Freeman	For adults, like my son, the future looks extremely bleak. There are such large gaps in all of these services and policy issues that he can't help but fail. My biggest concern right now is getting him vocational training so he may be able to support himself but I still have to plan on supporting him even after my wife and I are dead and gone! Which means our retirement has to support not only us, but him also!! In today's and the future economic outlook, I can't put enough away to meet the needs of all of us for the next 50 years which means we have to keep working until we die.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Long term and financial planning are a priority for research, services, and policy ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
M. Hail	health and quality of life across the lifespan, financial planning and community integrationThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Long term and financial planning are a priority for research, services, and policy ; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous	The civil rights of individuals with ID/DD are being undermined by rules that artificially define what "community" is for us. Community cannot be imposed. It is experienced; it is a personal feeling of connectedness. Just because we need some help with services and supports does not mean CMS or the DoJ or so called "advocacy" groups get to dictate where we live or with whom we choose to share our lives. The supports and services should attach to the person, follow the person .... stop supporting efforts to deny us our rights, the same rights everyone else has of freedom to associate, or NOT, freedom to live scattered in anonymous communities or NOT. Step back. Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers ; Research and services to improve health, medical care, safety and quality of life across the lifespan ;
Anonymous	Disability benefits should apply once a diagnosis is made. It should NOT matter what income a parent has, especially if they are working. A disability doesn't go away just because of the amount of money you may have. Those benefits could help prepare the child for adulthood.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Long term and financial planning are a priority for research, services, and policy
Yvette Cunningham	Unable to get financial help. SSD should be automatically given to every Child, young adult or adult diagnosed with Autism. Student or not. Have never had help with financial services, was denied at 18. This us wrong. Need more affordable nice housing for our autistic family, not getto. My son is noise and smell sensitive along with many other things. What happens to him if something happens to me. Independence may never happen for him. Nothing for them after high school, need more help.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Need assistance for adults with autism and their families in navigating available adult services; Long term and financial planning are a priority for research, services, and policy
Cheryl Miller, Parent and teacher	The quality of life is what is the major downfall for these kids when they are not helped and especially helped early. These are not kids that a lazy and do not want to succeed but quite the opposite. The only real chance they have is to give them the services that will help them later and stop letting the schools deny them the needed services to help them be successful. Stop paying attorneys and pay the teachers to be trained.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Need for a larger, better trained and compensated workforce for adults with ASD ; Research and services to improve health, medical care, safety and quality of life across the lifespan
Kristie Patten Koenig, New York University	This is where the funding streams have to shift to as children grow up to be young adults and still have autism. How do we utilize core strengths and abilities and shift the paradigm from a deficit based model to a strength based approach that looks at meaningful outcomes in work, education, independent living and quality of life. We must make this shift!Themes Addressed: Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Research and services to improve health, medical care, safety and quality of life across the lifespan ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Judy, parent	Planning for adulthood. More resources for training and employment opportunities to foster independence and a meaningful life.Themes Addressed: Long term and financial planning are a priority for research, services, and policy ; Research and services to improve health, medical care, safety and quality of life across the lifespan; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sharon Howell	housing and vocational trainingThemes Addressed: Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Quality of life Community integration Caregiver supportThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Research and services to improve health, medical care, safety and quality of life across the lifespan
Maria Grullon, Mother of autistic boy	It is lack of information, meeting with families and providers, continuously and early in the life of an autistic individual to plan, and execute the future of an autistic person. Up to the age of 21 these individuals are under Boards of education whose main incentive is to keep their budget low. this leaves autistic families focused on advocating for funding of necessary services instead of focusing on delivering the best services to help the individual be an independent member of their community to their best abilityThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve transition services, and provide better assistance for young adults and their families during transitions
Mayra Zamora	Our main concern is the access and availability of services for adults with autism such as housing, education, and therapeutic services. Such a limited number of services for such a large group of individuals that need them is alarming. The rising cost of those services is an issue as well.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options
Racshelle Bean, Parent	We are extremely concerned of what his future holds in regards to his health, quality of life, transition, employment & housing.Themes Addressed: Improve the quality, accessibility of housing options ; Research and services to improve health, medical care, safety and quality of life across the lifespan ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
LOUISE KATZ, ATTORNEY	Adult services, housing, employment.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	In addition to a focus on establishing services and supports for all adults with ASD in the areas of education, employment, housing, financial planning and community inclusion, sexuality and relationships should be included in research, policies and training for providers and in service implementation. Establishing a peer support service, similar to the one used in the field of mental health and substance abuse could also be beneficial to adults with ASD. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options ; Need for a larger, better trained and compensated workforce for adults with ASD ; Research and services to improve health, medical care, safety and quality of life across the lifespan
Kimberly Perritt, Teacher	Transition and adult services, with emphasis on high quality of life for adults on the spectrumThemes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan ; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	This is a very important topic and with new laws being past the future of these adults are in jeopardy. Adults with disabilities should receive training for job placement and need to learn to be integrated in the workforce. This can happen with Job Coaching, training facilities, and vocational training. These individuals need further guidance and assistance. It is na've to think that all of these individuals are capable to just fend for themselves.Themes Addressed: Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.) ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	community integration employment housing agingThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Charlene Williams	Housing and independent living. At 21 my son has supports for college but not for independent living. I am forced try to fill this role or find services which must be paid privately. Also since he is high functioning he is frequently told he doesn't qualify for services.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Not only is there a great demand for autism trained therapists for adults (ones who are able to diagnose), but also a great need for occupational, physical, and speech therapists. At the moment, there are very, very few of these therapists who are trained to work specifically with autistic adults. Also, transition services and programs for both vocational and educational (whether traditional college or vo-tech schools) areas are desperately needed. Hands on, modeled, how-to training classes and programs in many areas--including social, relationship, recreational, organizational, financial, etc.--must be made available and affordable and taught by teachers who have received evidence based autism training. Finally, there is a HUGE need for appropriate physical activities and fitness training for this population, children and adults. Gross and fine motor coordination issues, lack of body awareness, vestibular and proprioceptive domain challenges make physical activity difficult to begin with for this population. Often, teachers and coaches simply don't know how to work with ASD individuals. Gyms are a nightmare for a lot of spectrum people because of the general sensory barrage of these places. Team sports are difficult because of social and processing speed difficulties. As a result, rates of obesity, physical health ailments, depression, and anxiety are extremely high in this population. They need help!Themes Addressed: Need for a larger, better trained and compensated workforce for adults with ASD ; Research and services to improve health, medical care, safety and quality of life across the lifespan ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Post-secondary supports, including availability and efficacy. Family supports for high-needs individuals. Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Joseph Schunk, Parent	adult services, education, vocational training -- there's not much after age 21. Certainly not a clear road map. Gaps and silos between what there is. Not well designed for autism.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Amanda	Health and QOL across lifespan. Financial planning.Themes Addressed: Long term and financial planning are a priority for research, services, and policy ; Research and services to improve health, medical care, safety and quality of life across the lifespan
Rebecca	Many autistic people grow up and lead fairly normal lives but again, they are typically left out of the conversation on how autism affects people, left without any support or services, and they are often invisible to most of the world even though there is a large number of them out there. I think the biggest thing necessary for adults is giving them support in areas they feel they're disabled, while educating the general population about autism in a way that frames it as a different type of brain rather than a horrible epidemic. The latter is dehumanizing.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Services and research should take into account the perspective and choices of adults and their families/caregivers ; Improve community integration/inclusion, including social isolation and community education about ASD
Gina Pepchinski	This is the issue of most concern to our family as our son is 26 and unable to live independently. He attends a local day habilitation program and lives at home with us parents in our 60's. He has no siblings or other close relatives to live with when we are gone. We have been told that he is really not a candidate for a group home. We have set up a special needs trust, and while there should be adequate funds for his care, our state does not have a program that would allow him to live in his own house with 24hr staff. He enjoys living in the neighborhood where he has lived since birth. We would like for that to continue when we are gone.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Bronte Abraham, Parent	Employment that is viable to live on vs. just a few hours a week is key. Apprenticeships, internships to learn a skill -- not a soft skill -- is very important. Housing alternatives such as shared condos and houses are also good models and replication projects would be good. Themes Addressed: Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Cassie Melvin	I feel more should information should be provided to parents of kids with ASD in the elementary and middle school years to understand and prepare for adult services that they will age into: health and quality of life across the lifespan, transition into adult services, including eduction, vocational training, employment, housing, financial planning and community integration. Provide affordable venues, websites, booklets and dedicated personnel to explain what our options are for the future of our kids and what we should be doing now to prepare (get on a waiting list for a waiver, who to contact, etc).Themes Addressed: Improve the quality, accessibility of housing options; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Leslie Hollis	The number 1 question parents have as their children get past age 10 is "What will happen when they graduate the school system'? Employment, housing and community integration are very important and currently very piecemeal in deliveryThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Housing options. Meaningful employment. Transition to adulthood. All of these topics are going to be huge obstacle for us as a society. Autistic children are becoming autistic adults with limited options due in large part to inadequate preparation and transition to adulthood. Best practices should be identified and then duplicated to support transition. There are small programs around the country creating pockets of success. Where are they? What are they doing?Themes Addressed: Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions
Morgan Smith, An Autistic Adult	As an Autistic adult, the future is bright. As I've said before in other answers, services for autistic adults are few and far between. We need services designed by us(Autistic people) for us (Autistic people). These should include assistance with finding housing, getting jobs (good jobs in our field of knowledge). It also needs to be known that no, I am not like your autistic 5 year old, and Autistic adults are different than autistic children because we are adults. All children grow up, some just do it their own way.Themes Addressed: Services and research should take into account the perspective and choices of adults and their families/caregivers ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Beth Thompson, Milestones Autism Resources	Transition Adult Services Vocational Training and Employment Services Housing Community IntergrationThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous, none	All of the topics are important, but one of the most neglected is needs of aging population who have been late-diagnosed or not yet diagnosed & need affordable diagnostic servicesThemes Addressed: Improve access to diagnosis for adolescents and adults ; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.)
Anonymous	There are very few adult programs that fit the needs of today's adults who have disabilities. They do not want to sit in a sweat shop all day or walk the mall all day. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Andrea Gilkison, Autism Society of Indiana	Contrary to the sound of this survey...I am a optimistic person...this question makes me pessimistic. I am gravely concerned for the adults we have now and the adults to come. The supports we have in place, can not and will not, bear the weight of the burden of people coming through to adulthood. The groups homes, supported living, residential care are all lacking. Lacking in the shear number available, resources while placed, education of need and placement, it goes on and on...Without the proper money being allotted to school life skills programs and Special Education resources, teaching young people how to cope outside of the school setting and preparing them for life or post secondary education. We are already seeing a increase in homelessness, judiciary intervention, human trafficking, and arrests of those with ASD.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions
Kelley M Peabody	My son is 24 yrs old. We need to get services more quickly and better coordination.Make better decisions-listen to the parents more and realize,more than just lip service,that they know their baby/child/young adult/grown adult better. We want good advice. My son has no job and the longer he is allowed to just sit the harder it will become for him. He also has other conditions along with autism OCD/Anxiety which needs to be better addressed. Sensory is a big issue and I have never seen that directly addressed.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jessica Green	Services basically drop off for adults with ASD, providing more resources for care and coverage for these people as they are not longer considered childrenThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve transition services, and provide better assistance for young adults and their families during transitions ;
Anonymous	Extremely important cause there are going to be so many adults with Autism and most parents will not be around since we are having kids later and later in life and they need to be looked after........ We do not want our autism adults to be the new homelessThemes Addressed: Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.) ; Improve the quality, accessibility of housing options
Piper Davis	My granddaughter is only six; however, I already worry about her transition to adulthood and her ability to function in the workplace. I am not aware of any transition services or adult intervention programs, but they will be sorely needed.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition/adult services are very weak. Early intervention is very good if diagnosed. Current older adults with ASD have no resources. They cannot read social cues but occasionally know they missed something. They feel "dumb" because they don't know about ASD. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve community integration/inclusion, including social isolation and community education about ASD ; Improve transition services, and provide better assistance for young adults and their families during transitions ;
Tina Santana, Parent/Self	Housing and transition across the educational and social steps we have. Parents like me are so caught up with the day to day, we forget about the week, month, and years ahead. We need to know how to plan for things like long term care, and those little realities that service providers care for - like a non custodial parent who has nothing to do with care of my special needs son.Themes Addressed: Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Improve transition services, and provide better assistance for young adults and their families during transitions
Rachel , Waterson	My son is on the waiting list for a waiver thru summit county. He will someday need to go in a group home because he will not be able to take care of himself when we pass away. I don't need it to be a fast transition but would rather start slow. He would need direct supervision to work but it may be possible one day.Themes Addressed: Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jen Meyers	We have a HUGE community of autistic adults or almost-adults that desperately need services to help them function as independently as possible. The thing I hear over and over from parents is, Who will take care of my child when I'm gone? It's a terrifying worry to have to face as a parent.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Long term and financial planning are a priority for research, services, and policy
Anonymous	Transition Vocational trainingThemes Addressed: Research and services to improve health, medical care, safety and quality of life across the lifespan ; Improve transition services, and provide better assistance for young adults and their families during transitions
Anonymous	Autistic children will live a longer life span as adults. We need to focus on how to keep them active and engaged in the community, how to provide accommodation, vocational training, and employment opportunities. Most importantly, how do we integrate adults with ASD into our community/society so that they can live a happy and a fulfilling life. What about creating an autism center program in each college/university? The reason is because a college/university has all the amenities -- cafeteria, dorms, securities, job opportunities, a campus, gym, education program --like a self-contained community. Thank you, LengThemes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Veronica	I receive Social Security Disability $827 a month. I am married and have two sons, ages 7 and 4, both with ASD, our 7 yr old has severe autism (low verbal and not toilet trained, at risk for wandering / eloping). What happens to us if my husband who is 18 years older than me dies. I do not know how I could afford let alone manage my children on my own. I don't even know how to drive (fear of driving - phobia). We would be at risk of homelessness and they could end up wards of the state if we were not helped. Themes Addressed: Need assistance for adults with autism and their families in navigating available adult services ; Long term and financial planning are a priority for research, services, and policy
Stephanie Mendelson, SASI (Suffolk Aspergers/Autism Support & Information)	transitioning over time to living an independent life with supportThemes Addressed: Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions
Erin Fallon, Teacher and Parent	vocational training is a major concern . Children and adults with disabilities should be exposed to programs that will enhance natural talents and provide access to meaningful employment. Employers should be offered incentives to hire individuals with disabilities and these incentives should be passed down to the employee that trains the individual with disabilities. Housing is also a major concern. Adults who live with their parents are forced into placements that are not appropriate . There are currently very few options for adults with disabilities regarding housing . The waiting list is very long and the cost is outrageous . We are going to be faced with a large amount of children transitioning into adulthood. WE ARE NOT PREPARED.Themes Addressed: Improve the quality, accessibility of housing options ; Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Pat C	Vocational training is desperately needed not only for people on the spectrum but also for the large population which does not attend college. Finding and supporting employment will reduce the need for other services and improve the quality of life for individuals, their families, and society. Providing incentives to employers to hire, train, and retain people on the spectrum would vastly help. SSI rules penalize people for working and do not allow them to save for life's necessities like housing or a car. ABLE accounts are a good start. There has been a big push to eliminate group homes and state institutions but no planning for where and how individuals will return to their communities. Piloting community living options is needed.Themes Addressed: Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Nicole Miller	Housing and policy requiring areas of a set population size to have a higher number of housing options. In Michigan there's none. Employment is always needed. Voc Rehab will never be what it should be. Michigan Rehab Services spends all their time fighting about how they can't support those who need services most. Financial planning supports are needed. Arc Michigan is the only one with unbiased information and ABLE accounts still aren't available.Themes Addressed: Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Community integration. Social opportunities. Strong anti discrimination policies in workplaces. Segregation is a problem. Need for nt allies.Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Stacey Phelps Anderson , Parent of three teens w/ diagnoses of either Autism or Aspergers	Vocational training needs to be available as well s transitional help to college but he public and private schools need to be aware of what is available. It is mandated by law that iep's teams include these agencies starting at age 16, yet most don't know what agencies to invite.Themes Addressed: Improve transition services, and provide better assistance for young adults and their families during transitions ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
DeAnna Parker, Parent/Professional	Vocational training, education (post secondary) employment, and housingThemes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Sylvia Diehl, University of South Florida (Retired)	We need APPLIED research on educational practices that transfer to real life application. Vocational training options are less and less in schools with priorities more and more focused on test scores. Children with ASD are expected to fit in to what is available instead of being able to use their avocation and turn it into a profession. There is precious little housing or even a plan for community integration. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing options; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	There needs to be more/better services for when our children move into adulthood. At 21 they are done. There needs to be more education, jobs and safe housing.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Marc Freeman	It wasn't until high school that we were even aware of any services available to us. Now that he is trying to get into vocational school, it feels like we are starting all over because now he is considered an adult and services are almost non-existent in Texas.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Kathryn Hedges	Supporting adults over the lifespan is a huge gap. Only 1% of spending goes to lifespan issues, but if 1 in 58 (approx) Americans are Autistic, we have millions of adults who may need support and very few of whom get support. Whether someone needs 1:1 24/7 support or just a mentor to check in with, Autistic adults should not be living in nursing homes, living with resentful family members, living on the street, or living with abusers to stay off the street. We don't even have comprehensive statistics on adult autistics and their needs. Mostly we hear from parents concerned about their children aging out of the school system and associated supports. Many parents are overprotective and insist that their children have to be in some form of congregate care, even though this is contrary to the Olmsted decision, because they don't have safe community options available. We don't need to research autism risks. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve the quality, accessibility of housing options
Anonymous, none	Largest gap is in resources, etc. for adults on the spectrum, services for recently-over-21, and affordable diagnosis for previously undiagnosed elders so that they can access appropriate services, especially crucial for elders who have no family support, a situation increasingly found among elders in this generation.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Improve access to diagnosis for adolescents and adults
Marc Freeman	As an adult, my son needs all of this and can't access it! There is too much bureaucracy, not enough resources and way too little money to meet the needs of adults with ASD, especially here in Texas. Adults have none of that support and are dependent on their parents. But what happens when their parents are no longer there?!Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Long term and financial planning are a priority for research, services, and policy
Anonymous	Peer Support programming can be an important component of community inclusion services and provide benefits to engagement. Streamlined access to services throughout the lifespan is an important component for families to ease stress and burden of diagnosis and care navigation over time. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD
Bronte Abraham, Parent	It is important to education on the difference between adaptive and inclusive and include both thoughout the life cycle. Also, anything that can help with job placement -- speicifically development of skill based internships is needed and welcome. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Jill Escher, Escher Fund for Autism	There is no question that the failing and wholly inadequate adult services system is the number one crisis in the autism community today. Young adults are aging out of school, often still requiring intensive supports, but into a system beset by dramatic underfunding, waitlists, and and inability to meet the unique and difficult needs of adult autism. As parents age, the crisis grows ever more acute. Families are panicking as they see no system in which their grown but highly dependent and disabled children can be cared for. Nothing is more urgent than a wholesale reinvention of the adult autism services system in this country to serve the exploding population who require long-term, and very expensive and complex, care.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Long term and financial planning are a priority for research, services, and policy
Anonymous	Services across the lifespan is another primary concern. There should be no "cliff of 22" when services drop for people who need them. Employment (meaningful) needs to be addressed as well. Autistic individuals are an untapped resource in our country.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Morgan Smith, An Autistic Adult	There needs to be services for autistic adults as well. Children become adults and most of us need these services still. Most services stop being available once the person is 18-21. Of course, we need support groups for autistic adults, autistic children, and parents of autistic people. We need more services designed by Autistic people for Autistic people. Many of us find it hard to get a job because of difficulty with eye contact(which isn't something we can be taught, it cause lots of us actual pain) and other things, so services to help us get real quality jobs in fields we enjoy and are good at is something we definitely also need. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults ; Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Veronica	Parents are in fear of the future when we are dead or no longer able to care for our adult children with special needs. We need choices. Not a one size fits all approach. Some individuals may still need "institutional" living that still has access to the community while others may live in a more community setting such as group home, assisted living facility, or personal care home with intermittent access to an institution for the severe and profound. Just because you are in the "community" does not necessarily mean you are not isolated. You could be less isolated in a group of people you have things in common with and just need your rights respected such as right to privacy, visitation, what food you eat, etc. Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD ; Improve the quality, accessibility of housing optionsLong term and financial planning are a priority for research, services, and policy
Elena Kelley, Mother	Priorities....money. The pentagon gets plenty to kill and maim, but taking care of our most vulnerable, including education of the neurotypicals, is not a priority. With enough funding there are plenty of people who would love to help, do research, etc..... My daughter is 33. As a child I thought she was partially autistic. Since she was verbal and didn't flap her hands the experts said that she could not be partially autistic. She was 18 before she got the diagnosis of Aspergers, and she has deteriorated with time so that her autism symptoms are more pronounced. So I am not familiar with the current screening, diagnosing, etc. I will tell you that after the age of 18 there are way fewer resources for our "children" as far as diagnosing, treatment, psychotherapy, etc. First of all, we have to have more help for adults. A big issue is that people with autism are frustrated and need more fresh air and physical work. (And most are more social and have stronger feelings than we are led to believe...they just can't show it the same as neurotypicals or process feelings as well.) I know a pill is easier, but it doesn't actually help enough people to live a full life, it does make it easier for caretakers to keep them "compliant", but I believe it often takes away their quality of life, it doesn't address what's really going on. Infrastructure....more smaller housing for people on the spectrum so that they can participate in community life. So that they can have homes just like the rest of us. I believe that a lot of people on the spectrum benefit from manual labor, which can have a regularity and a structure to it and why so many benefit from things like weight lifting, moving boxes, etc. Anxiety is very common with autism and physical exercise and fresh air help with anxiety a lot. Some people are using farming, including urban farms, to help. Those could be used from grade school on into adult hood. You also get a sense of personal satisfaction for having done a good job, expelling energy, and having a product to show for it. Could even make money from it and not have to rely as much on the government for your support. Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Matthew Carey, Autism Parent	We undoubtedly have a large population of undiagnosed and inappropriately served adults. The fact is that we are not currently identifying all the autistic students in our populatin. Consider that a large fraction of the autistics in each CDC report are undiagnosed. For the adult counts of today to be accurate, we would have to believe tha decades past we were accurately diagnosing as good or better than today. Clearly we were not and clearly we have missed many adults. We need to serve our entire community and that includes autistics who do not have a diagnosis. The first step is to find out how to screen and diagnose this population. For parents like myself, this is not an altruistic exercise. We must know what has worked in the past in terms of adult supports and services, or our kids will be the experiment. For many years we have relied upon the idea of an "epidemic" or an oncoming "wave" of adults to try to catch the attention of lawmakers. If we've learned anything it's that lawmakers don't care about problems that are 5 years or more in the future. But telling people that we need to serve a large population of adults now--that might get the wheels spinning. The strategic plan must includes 1) A study on the prevalence and, more, the living conditions of adult autistics. "what does the future hold?" If we don't change things, the future holds a lot of discussions about how we failed to act to improve focus on adult issues today. One word here for emphasis: adults. Adults. Again, Adults. The timeline for research to impact practice is long. We needed better strategies for supporting adults long ago. We absolutely need to put a huge emphasis here now. The adult population has as broad a spectrum of needs as children, but we seem to only recognize high support and job assistance as areas of need. 1) Studies (plural) of living situations for adults today so we can understand what works and what doesn't work. This can not be emphasized enough. We have very little data in this area. 2) Specific studies to explore ways to support non and minimally verbal autistics in adulthood. 2b) Studies on how to insure community inclusion opportunity for non and minimally verbal autistics. This is an often high support population that can easily be sidelined into placements that offer little or no community access. 3) Continue to study the transition to adulthood as this handoff is badly handled. 4) Study the capacity of adult programs relative to the need. Such a study could bring attention to the lack of capacity we face. 5) Study medical service delivery to autistic adults. 6) Study medical service delivery for individuals of all ages who are non or minimally verbal. >70% of information used to diagnose is from verbal communication with the patient. Sensory issues can very much limit diagnosis (how do you diagnose an individual with atypical pain response) Please focus here on "lifespan issues". Start with the basic question: do we even have an understanding of the problems faced over the lifespan to forumulate questions about infrastructure. We do not. We need ASD surveillance work on adults. Adults of all levels of support needs. We needed this years ago. We have an active ASD surveillance system for 8 year olds. This was recently expanded to younger children. But what about older children and adults? A few years ago we heard about the medical conditions that are more common among adult autistics. We recently had a study that showed the life expectancy for high support autistic adults was age 40. 40 years old. We have spent too much time and too much money on autism to be just learninig such important facts. We need to focus attention on adults."Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults;Improve access to diagnosis for adolescents and adults; Improve community integration/inclusion, including social isolation and community education about ASD; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options;Long term and financial planning are a priority for research, services, and policy; Research and services to improve health, medical care, safety and quality of life across the lifespan
Lori McIlwain, National Autism Association	Suicide ideation and attempts in individuals with ASD is a critical topic with limited awareness, identification, research and treatment options. We have limited information on the current number of adults with ASD in the U.S. who have experienced suicide ideations, have made attempts or completed attempts. For those with ASD who are suicidal today, there is little data that indicates what age ideations began, and how it may affect later-age ideations and attempts. We must also ask how we can address this issue both reactively during a time of crisis, and proactively to prevent occurrence or re-occurrence. NAA encourages the creation of a central channel, such as Autism.gov, which can be more easily accessed by individuals and families in crisis, and those interested in prevention and crisis readiness. Such channel can also assist individuals and caregivers on critical topics, such as proper housing, transitioning, social security, college, life skills training, employment, and services available. Training on interaction is a critical need for caseworkers, caretakers, employers, law enforcement, and first responders. Overall, a comprehensive federal autism plan is needed to address all issues related to adult services. Right now, most of our constituents do not have a clear picture of where their children will live, work -- and how they will be treated – beyond their parents’ lifespan. There is limited surveillance on early-age suicide ideation and overall suicide ideations and attempts in the ASD population. Physical and sexual abuse of those with ASD are also understudied. Overall, a comprehensive federal autism plan is needed to address all issues, and a central channel such as Autism.org would assist with outreach. In terms of collaboration among ASD nonprofit and federal entities, we recommend that the Alzheimer’s National Plan Milestones Chart (listed under Appendix 2: Implementation Milestones) be considered as a model to follow.Themes Addressed: Improve access to and quality of adult services, including additional research to improve evidence based services for adults; Current priorities are all important/relevant (health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.); Improve the quality, accessibility of housing options; Need for a larger, better trained and compensated workforce for adults with ASD; Research and services to improve health, medical care, safety and quality of life across the lifespan
Anonymous, Pittsburgh Center for Autistic Community	1) Assistance in basic executive-functioning/social-navigation challenges such as financial management, utility arrangements, neighbor relations, transportation planning for adults. 2) Expanded Medical Assistance coverage. 3) Vocational Rehab funding and autism competency. 4) Community inclusion and right to remain in community. 5) Expanded housing options. 6) How do we help adults navigate the system to get and keep the services they need to remain in their communities as they age and lose informal support systems? 7) Availability of supports for adults at all “points on the spectrum.” Themes Addressed: Improve community integration/inclusion, including social isolation and community education about ASD; Improve the quality, accessibility of housing options; Research and services to improve health, medical care, safety and quality of life across the lifespan;Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities
Anonymous	Transition and vocation, community integration Themes Addressed: Research, services and policies are needed to improve vocational/employment and post-secondary education opportunities; Improve community integration/inclusion, including social isolation and community education about ASD
Shannon Des Roches Rosa parent	We need more research into these areas. Period. We need the proportion of research to reflect the real need in these areas. With regards to housing, we need to ensure that options like supported decision making are emphasized, and that autistic people live in, and are not segregated from, our communities -- while still getting the supports they need and deserve, regardless of level of need. The lack of available, affordable, accessible, and appropriate long-term housing for autistic people of all abilities needs addressing immediately, and on a national scale. We need better streamlining and public messaging regarding services. Too many families are not aware of available options, especially in traditionally under-supported communities. This extends to which children (and adults) are diagnosed in the first place. Overall, the emphasis on all of these services must center on understand how autistic people think, feel, and perceive the world. No amount of research or effort will be useful if it is based on bashing a square peg into a round hole. It makes no sense to focus on wandering, for instance, without understanding the legitimate reasons why an autistic person might feel compelled to leave an area -- including normalization-based mistreatment, sensory issues such as noise or smells, hunger, need for intense activity, boredom, etc.Themes Addressed: Improve access to diagnosis for adolescents and adults; improve community integration/inclusion, including social isolation and community education about ASD;;Improve the quality, accessibility of housing options

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