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Question 6 Responses

How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood?

Topics from Responses to Question 6

Acceptance: Ensure that autistic people are welcome in and accepted by their communities.

Respondent Response
Raliat M. Bello Again, more awareness on ASD. This will bring more opportunities for ASD community.
Laurence Cobbaert , University of New South Wales (Australia) 1. BAN APPLIED BEHAVIOR ANALYSIS (ABA), NOW! Listen to autistics when we say this is harming us. Respect the fact that, yes, we are human beings with feelings and emotions, not random behavioral scrapbooks to be conditioned for societal compliance. 2. Improve inner wellbeing and quality of life by respecting our agency, uniqueness, and dignity. 3. Acceptance of stimming and the double empathy problem. 4. Acknowledge the catastrophic risks of autistic masking and burnout. 5. Provide sensory accomodations at school and the workplace.
Anonymous We need more education of the public on what it’s like to be autistic. Schools and businesses need to give employees more flexibility to move when the work, to work from home, etc. They also need to respect sensory differences (more windows and less fluorescent lighting, quieter spaces, etc)
Anna We have spent thousands of dollars trying to make disabled people more palatable to non-disabled, and I feel like it's time for society to become more accepting and accessible in general. I've found the autistic community to be brilliantly interdependent without interventions, and the credential I'm getting is just icing on the cake. Let us help eachother, fund our groups (please federally fund OUR groups that WE start) because we know what is best for eachother. The Deaf community has Gallaudet and I'm starting to think that having some autistic universities could be absolutely amazing. Support the autistic community in supporting each other.
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) The answer to this question is well addressed in those responses to previous questions: Providing not those critical services (physical therapy and social support services, individually through counselor and through group support), but through legal diversion in the criminal legal system is paramount. Many Autistic adults were easily picked by law enforcement not for crimes committed, but for general inappropriate behavior they exhibited in public. The police's objective to sustain the revenue for their operations and those of the court have victimized many Autistic individuals when the true remedy for such common inappropriate behavior has been through interventive counseling, social support services, and physical rehabilitation and conditioning to enhance the quality of their lives. Physical rehabilitation will allow them to be productive members of society to work sustainably in an occupation and social assimilation to allow them to attain close relations and learn social boundaries and behaviors.
Anonymous TV advert about quietness peace and quiet. High profile quietness and meditation adverts.
GS, Autistic Person My needs, as an autistic person, are similar to those of any other human being. Autistic people are people. However, despite having the same needs and the same rights (at least in theory) as non-autistic people, our needs are less likely to be met. Prioritizing initiatives that improve access to housing, health care, education, vocational training and employment, and more, would help autistic people, as would protections from discrimination and violence. It is important to address the needs of autistic people at every stage of life, and to help them access the services they require to live in their communities. That being said, perhaps the greatest barrier to the full inclusion of autistic people in society is non-autistic people; educating this group -- dispelling myths and misconceptions about autism and autistic people and ensuring that allistic people have access to accurate information -- would go a long way towards improving the lives of autistic people.

Accessibility: Ensure that services and supports are available, accessible, and affordable.

Respondent Response
Stefanie Lombardo, Parent. Guardian. Caregiver. Advocate. No transition program of any kind that my son could legitimately access was made available to my son when he aged out of school in 2020. Pandemic aside, our state and county simply had nothing to offer a young man with his level of need. He remains on a waitlist for a community waiver, so he could not access programs for waiver recipients. His ability to engage and attend in a work environment is severely limited (say 4-8 hours per week as a start), and our Division of Rehabilitative Services did not have any offerings that fit his current profile. We have found no opportunities for someone at his educational level to engage in continuing ed opportunities. None of our local museums, etc. have indicated they have programs for older disabled adults, who are not part of an established waiver program), to participate in structured access days/programs. His doctors are often not overly familiar with adults with special needs and therefore require persistent interaction from caregivers to ensure quality care.
Anonymous Difficulties concerning hygiene, pain awareness, body awareness etc seem typical in the more severe of the population and routines help to address but do not fix that issue. Many of the issues of an adult with autism go beyond the realm of polite conversation. Much of what is most needsd is the help of trained compassionate individuals to monitor and attend to these asults and help make their lives manageable. People are the best solution--as we funded math teachers in the 80s we must now fund the education of and properly pay the caretakers of the future.
Stephanie Bridge, Parent Easier access to waiver services so that the adult can receive access to day programs, community programs, vocational training, etc. Our son has been on a wait list for the waiver for 15 years.
Melissa Drake, Mother of two sons with autism Again, RTF’s built to accommodate our severely affected population with ASD. Stop capping parents income when we obviously struggle enough to provide! Our kids deserve every opportunity and inclusion and forcing parents to make poverty level money for help is disgusting.
Nicole Shelton, AdvocacySD By actually having programs available for them. There is such a discrepancy between states and even counties in regards to what’s available and how people with disabilities are viewed, that this is going to be a really hard one to tackle. We need more job training, we need pragmatic language skills, taught two adults, and we need more independent living options for students with disabilities, not just those with autism
Sherrill DeGenova Many states are set up to provide funding for autistic individuals - but most states do not have services to purchase that are either therapeutic or leisure-oriented. The $$ is available only if the services are medicaid-approved...which is meaningless if the services needed are NOT available. There is NO incentive for agencies and businesses to serve this population. So the states keep the $ because it can't be""spent"" (since there is a lack of appropriate services) and the individuals get worse and worse and their families fall deeper into the black hole. ALL of the above points in the question are PRIORITIES.
Anonymous Need a funding source like SSI to supplement income of people with autism. They often get denied qualification of the current SSI. Some ppl with autism go to college but have to return to parents home because their work income (if they find a job) doesn’t support independent living.
Anonymous More financial support! Even people that supposedly appear ""functional"", cannot hold down jobs due to social communication issues associated with the disorder. Adults need financial assistance for supporting them through job gaps as well as needing access to specific mental health providers that may be able to assist adults with ASD in learning better communication skills. That said, it should be made easier from state to state for people diagnosed with autism early in life to have access to financial means for therapies when they become adults--no more 15 year long waitlists.
Edythe Koerber , Mother As I mentioned previously the Kansas waiting list of 8-10 years does not help. My son is 22 and has been on list two years. Therefore he could be 28-30 before he receives assistance with independent living skills other than mine.
Frank Easton Bring the cost of living down, that's a big priority for the entire US. We don't make enough money even with government assistance to live. Food, housing, utilities, all need to be made cheaper.
Anita Thomson Services for young adults on the spectrum need to be easier to obtain.
Anonymous Better education for education and healthcare providers on the neurodiversity paradigm would ensure that more essential services are accessible to autistic individuals. The environment is often the cause of anxiety in autistic individuals, rather than autism itself, so working on making environments more flexible for all would serve autistic individuals but also people from all neurotypes. Normalizing neurodiversity should be the top priority to reduce anxiety in autistic individuals and discrimination against them.
Anonymous Provide real supports to families. Stop over-paying service providers and underpaying families. Discontinue making arbitrary changes to programs. In order to make a functional life experience for an adult child with ASD, the family needs honed research skills to combat an indifferent medical, social services, and governmental structure. It's disappointing how inconsistent the availability of real services are, especially given how enormous the state budgets are.
Sarah Zate, TTUHSC El Paso Cost-effective access to mental health services
Anonymous Make the states and federal government fund the Medicaid Waiver Programs (long-term care and supports) so that people do not have to wait 15 years for these vital services. Increase pay rates for caregivers and therapy providers. Provide benefits to the people who work for the agencies that provide the care.
Breanna Kelly, Benchmark Human Services Adult services are extremely rare to access. Lots of services are geared towards youth or adults with very complex needs. There is a large doughnut hole for individuals who require a lower intensity type of support but need assistance with adaptive skills. Often times, after individuals transition from school, they are not transitioning to much. This leads to increased mental health needs and supports because the individual isn't able to function to their full potential.
Korri Ward, parent, science teacher, local advocate First, HCBW services need to be reimbursed at a rate that attracts employees and incentives for college students need to be developed. The staff providing supportive living assistance need to be paid better than staff working fast food or retail. HCBW staff needs appropriate training for working with 200 pound adults with autism and they need ABA supports when needed. HCBW services cannot be considered a labor of love. My son's staff are paid $10.50/hour with no paid vacation/sick days or health insurance. My brother bags groceries at a local grocery store for $18.75/hour with health insurance and paid time off. Please fix this discrepancy. Second, adults with autism need access to Applied Behavioral Analysis when they are in vocational rehabilitation, college, working their own small business or just accomplishing activities of daily living. The ABA needs to be very specific, like learning a task for work, coping with the stressors of college life, or coping with a change in staff or loss of a parent.

Community: Implement programs and supports to ensure that autistic adolescents and adults have the skills and support they need to lead independent and fulfilling lives and be integrated within their community.

Respondent Response
Anonymous I do struggle with changes in routine. In hindsight, it might have been helpful during major transition periods to have someone around who could help me establish new routines. I can do all things through routines which strengthen me (lol).
Anonymous Drop off centers, developed for specifically this population of ASD. -restaurants with educated staff to handle behavior & perhaps “ASD” quiet areas available. -Non profits, or Churches to have education for how to help the families who can’t attend or they don’t know about in their communities for outreach. -Every University to be required any Health & Human Services area student ,ie: Nursing, Pre-Med, OT, PT, Speech, Social Work, Dentistry, Language, etc. & Colleges to have a community service internships to serve a local family & get hands on educational experience. This would provide a pool of quality service providers for Mental Health Counties across the USA.
Sue Yacovissi, parent Transportation resources are lacking.
Michele, Parent, school employee Transportation needed. Paperwork and communication with SSI is poor. Unclear and repetitive.
Marie Cullom Opportunities and exposure to independence, activities, job experience and college.
Sharon Montgomery, U.S. citizen Everything to help integrate them into the community and live life fully. It is sorely underfunded. Relying on donated laptops for job training and things like that.
Anonymous Community integration and ensuring respect of basic rights are the core of providing effective services. Community integration research on how to best support people with ASD to live more independently in supportive networks and to develop their senses of social inclusion.
Anonymous Community integration - all aspects. And parent/caregiver support for those who cannot be fully independent. Paid parent caregiver programs - community habilitation programs — to reduce the need of isolation and group homes
Amy Mason, Islands of Brilliance In the area of transition for autistic people, there seems to be good research around what needs to happen for them. For example, the development of self-determination skills is vital for anyone to move into adulthood. Autistic people often lack the foundation to develop such skills. They also often hold low expectations for themselves around what is possible. Since we know what needs to happen in order for autistic people to transition to adulthood, we need research and programming around what the rest of the world needs to know and do in order to accept and provide access for autistic people in their schools, workplaces, and communities. What does an employer need to know and do in order to hire someone with autism? What does a school need to know and do in order to create access for a person with autism in an elementary, secondary, or post-secondary classroom environment? What does the public library, the neighborhood grocery store, and the city parks department need to know and do to engage autistic adults in meaningful ways in their communities? This is the next step in creating accessible environments for those with autism.
Lucas Kunach, Fraser Please add as a focus: -- Community inclusion and belonging
Elizabeth Axford Continue to provide accommodations throughout collegiate and business environments. These accommodations should prioritize enabling nonverbal communication, adjusting for sensory processing, and difficulties in emotional regulation and executive functioning. Autistic adults should have access to services that enable their independence, including directing them towards job opportunities that accommodate them and play to their strengths, educating them (should they so desire) in financial and home skills, and ensuring they can communicate to the people in their life about their disability needs.
Anonymous I think they need more friends and acquaintances.
Dax, Autistic Self-Advocacy Network, Volunteer Get the police to stop shooting us and smothering us to death. It happens with painful regularity: An autistic person is out being autistic in public, somebody sees they look weird, they call the cops, the autistic person can't immediately respond to orders that they're expected to comprehend in a split second, they have unusual body language--and the cop shoots; or else they pin them down until they can't breathe, and they die that way. We are tired of seeing people die. If a police officer can't deal with an autistic person without killing them, they need to be kicked off the force. Public transportation. Autisic people need to be able to access public transportation anywhere they are, including in smaller towns and in rural areas. Many of us cannot safely drive, so in high school we need to be taught how to use multiple types of public transportation, including buses, taxis, and adapted transport services; and these services need to be funded so that they are reliable, available on request and with little notice, and sensory-friendly. Crucially, they need to be so reliable that they can be used to go to and from work.
Anonymous Establishment of autistic friendly safe spaces
Becky Rosenberg, Partners in Policymaking (Maryland) independent living to be added social components of life as an adult
Michelle Cheney The most important priority for autists is to end the ableist proclivity toward neuro-typical models and begin reinterpreting all systems and service sectors for autism accessibility. Autists are not neuro-typicals with a ""glitch."" The science and knowledge that exists to understand autism such as Theory of Mind, the Sally-Anne Test, mental health comorbidities, sensory overload, literal minds, and the emerging understand of the prevalence of autism and trauma does not flow into the service or educational sectors where autistic children, youth, adults, and their families will spend a lifetime trying to obtain as much help and as many skills as possible.
Carol Koch As the parent of a young adult with ASD, I urge the IACC to include in its Strategic Plan continued support for Self-Direction services, including a commitment to work on ways to help Self-Direction services become more sustainable and accessible. Self-Direction has greatly enhanced my son’s quality of life by providing him with greater choice and flexibility over his activities, more opportunities for participation in the community, and the ability to choose staff and work on goals that are uniquely suited to his abilities and interests. However, the success of his program is possible only because my husband and I have the time and resources to manage our son’s daily schedule and staffing, complete paperwork, and attend trainings and Circle of Support meetings. Like many families, we are concerned about the sustainability of our son’s program when we are unable to provide daily support. Independent Support Services, Inc. and the University of Minnesota Institute on Community Integration issued a report titled 2020 Evaluation of Experiences with Self Direction in New York State, (, on the sustainability of Self-Direction when the Circle of Support is aging or unable to provide the required support necessary for continued success in Self-Direction. I urge the IACC to study this excellent report and consider its findings in the development of improvements to Self-Direction service models.
Anonymous More social groups (not social skills groups) are needed that support a feeling of belonging and understanding. Once again creative arts therapies can support the holistic needs of adults with ASD.
Gina Stango My daughter is still young, so I don't know the specific challenges of adolescents and young adults with ASD transitioning to adulthood. I have been thinking that quality day treatment and programming seems like it would be helpful for the young adults with ASD and their families.

Coordination: Coordinate services to improve quality of life across the lifespan.

Respondent Response
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks. Parents, caregivers, professionals, and teachers have to work together as a team to provide quality of life across the lifespan. 1) Medical help from Doctors and Therapists. 2) Educational help from teachers. 3) Job training and Employment : a) High school should provide a training in areas of interest and get them ready for career. b) VR: Develop Computer related Job training for people with ASD. They are very talented and love technology.
Sally Smith Support. Understand that people with autism will likely struggle either with full time work or with self-care and sometimes both. They need to have consistent ongoing care relationships so that they are able to get support when life becomes overwhelming. I feel that a case manager would be a good way to meet this need. People with autism will have different needs at different life stages and they need to be supported so that needs can be addressed when they arise rather than when a crisis point is reached. Again a reduction in demands is very important and letting each person choose which demand they are able to manage. Disability can be able capacity not capability so teaching skills is not always an appropriate response.
Catherine Pinto, Parent Well trained social workers and supports coordinators with small case loads can be immensely helpful to adults with autism and their families. More funding for direct support workers is crucial as well.
Josh Compton Programs for children and adults should approached as a continuum—not as separate entities. The benefits are many, including better long-term planing, better assessment, and better understanding.
Stacy L. Nonnemacher, Pennsylvania's Bureau of Supports for Autism & Special Populations Practice guidelines for states to blend cross system services and supports for autistic adults is sorely needed. Additionally, an analysis of state adult waiver programs like Pennsylvania's Adult Autism Waiver and Adult Community Autism Programs is warranted to identify successes, gaps, and services needs that would better maximize quality of life for people with ASD. An analysis of state adult waiver programs and viable models like Pennsylvania's Adult Autism Waiver and Adult Community Autism Programs is warranted to understand high and low impactful factors that could be replicated and/or identified as a gaps in the service system to meet the needs of adults with ASD.
Lynea Laws, Ph.D., Zeta Phi Beta Sorority, Incorporated We can meet the needs of people with ASD as they progress into and throughout adulthood by creating global advocates and resources in developing innovative solutions for individuals diagnosed with autism, their families, and those who service them. By deliberately increasing the number of organizations, partnerships, and corporations that support people with ASD through advocacy, education, and funding; organizations and families create an inclusive world that encourages those affected to reach their full potential. Starting with well-developed and increased resources, Zeta Phi Beta has begun to bring about greater advocacy, awareness, and education. Currently, we have five published educational courses with an additional four to be released soon. The next phase is collaborating or partnering with organizations offering advisory, consulting, and training support. The vision is to develop a consortium of care networks that are not only aware of autism but are accessible and inclusive to individuals living with the autism spectrum disorder.

Education: Provide high quality continuing education into adulthood and ensure that the school system prepares autistic students for adulthood.

Respondent Response
Kathleen Education
Lisbeth Little Fully fund IDEA. Enforce state sanctions when a state complaint is filed. Train all teachers not just special education teachers that FAPE is individual to the needs of that particular student, train them to allow parents to fully participate. Most importantly train educators and administrators to write a decent transition plan. There is such a disparity in transition plans within the same district, within the same state or region. Some of the transition plans I review are inadequate. Some wait to long to include vocational, employment, housing. Most districts do not understand adult services or transition to adult services and most districts do an inadequate job of educating parents of the process and the importance of transition. Youth transition to adulthood services need to start in middle school. 14 is too late. (PA resident, 14 is the age transition plans must start being planned). We also need to fix adult services. Currently there are over 12K people on the waiver waiting list in my state, 5K of which are critical. There's 2,500 on the autism waiting list in PA. I suspect those numbers don't count all adults needing services, that's just the # who's families are aware services exist.
Dani Sellmer Education would be a good place to start in order to help these individuals into adulthood. Special education is only available to those who can afford it and public schools are failing to meet the needs of these kids so they have a chance to succeed later. Parents are not given any guidance on how to prepare their child for adulthood or where their child will go when they are no longer their to care for them.
Katie Vahey Gaebler, Parent and ASD consultant Even among the best intentioned and well resources school districts, communication is lacking!! transition between grade levels, reduced service options as students progress, and teacher + admin turnover forces parents to facilitate communication and leaves gaps at transition time (therefore 3 steps forward and 2 steps back- with every transition). Student Services technology exists that can smooth these transitions, providing insurance against slidebacks. Schools need to better adapt a SaaS platform as a primary learning tool, log for communications, and insurance so fewer legal interventions (and teacher distractions) can be assured.
Jodi Pliszka, Neurolicity There needs to be more education starting in elementary school all the way up to high school for females on the spectrum.
Deepti Structured education from nursery till job
Laurie, ARC My daughter could not finish college on her own. There are some supported college programs at UC Davis, Cal State East Bay and UC Berkeley-- but she can not qualify at age 29 as a community college transfer to UC Davis. She dropped out of UC Davis after 2 quarters and has been unable to do anything in the past 3 years due to anxiety. If she could participate in the freshman SEED program at UC Davis that is federally funded she might have a chance of finishing her degree. She would have to go in as a junior but we were told it is only for freshmen. Where do the autistic young adults get full support for college with check-in mentors, peer support, tutors trained to work with autistic young adults?

Employment: Implement training programs to support autistic individuals seeking employment and allow needed accommodations for autistic workers and job seekers.

Respondent Response
Jossette Bailey, UNC Chapel Hill Catching it early, recognizing that the ""spectrum"" isn't from ""very autistic"" to ""less autistic"" - I am in a phd program but it took me 10 years to complete undergrad because I had no idea what I was doing, didn't know what was ""wrong"" with me and had no support. Help autistic people consider what jobs/careers might work best for them and why. Sleep schedule issues - a later starting job? Customer service on chat/email instead of phone or in person. Help autistic people understand what job accommodations there are (how am I supposed to know what will help me?), tell us how to ask for these accommodations, teach autistic ppl how to self-advocate!
Anonymous Job interviews are one of the most uncomfortable situations for autistic people, because you're judged on your eye contact, posture, clothing, shyness, and answering complex questions on the spot. These expectations from employers need to be eradicated. Even if you do mask your way through interviews, like I have, customers with those same expectations cause massive discomfort while on the job. So, more social awareness that lack of eye contact is NOT rude or unprofessional, for example. ""Shyness"" also needs to be addressed in children and adults, rather than society seeing it as ""cute."" I never got diagnosed as a child because my family just thought it was cute. Inside, I was suffering massive anxiety during large gatherings, school, etc.
Danielle Witt For me I’d like to see more vocational training programs for these individuals so they can gain the skills to work. Right now I’m concerned that I’ll have to stay home with my son when he’s an adult if he can’t find a job or access to a program.
William Ash How are we supporting autistic adults in the workplace. The EEOC has reported that autistic individuals report discrimination at very low rates, yet this demographic is most likely to be harassed and bullied at work. I think looking at anti-discrimination policy and implementation is really important. I think it needs to start in the Federal government. Why do employees in the private sector have 90 days to file and EEO complaint, but Federal workers have only 45? Workplace harassment is traumatic and can require time to be able to make a complaint. When I called the EEO office at HHS when I was an employee, the person working told me not to both filing as it was a slow and painful process. The HHS department where I was working did not follow either their harassment policy nor their employment policy. I was bullied out of HHS and had no support from the systems that were suppose to protect me. Why doesn't the Federal government and HSS support the autistic community? What can they do to allow us to serve our nation? Meaningful employment is very important to our wellbeing and quality of life. Also, performance review metrics in the workplace can target the very traits that make a person autistic. I think the IACC is in a unique position to look at work for those with autism in the Federal government and the outcomes. It would make a valuable case study.
Trisha Gallagher, Public Special School Principal Transition and work skills - the majority of adults with autism are not employed, although they can work with support.
Julie Francois More needs to be done on financial planning, training and employment. What happens to these ASD kids once they are old enough to join the world? We need better preparation and it shouldn't be all on the caretakers.
Tiffany Aguayo, Work Based Learning Coordinator Independence (with appropriate supports) in the Working World and preparation for such via transition services (beginning at age 14) and Work Based Learning Programs and Pre-ETS via DVR (beginning at 16 years of age) through HS graduation. Include information like this to the business community, as well as employer tax perks with a focus of independence (with appropriate supports) in the Working World and preparation for such via transition services (beginning at age 14) and Work Based Learning Programs and Pre-ETS via DVR (beginning at 16 years of age) through HS graduation. Early intervention and transition services (beginning at age 14) and Work Based Learning Programs and Pre-ETS via DVR (beginning at 16 years of age) through HS graduation.
Lisa This is the number 1 issue. And the number one issue is employment. A public private partnership that improves the statistics on employment in a meaningful way.
Yolanda HollerManagan There should be more opportunities in vocational programs.
Lisa Nieman, Parent Hire them! Give incentives to employers for hiring a neurodiverse staff at all levels. Include neurodiversity in diversity trainings. Employers should be encouraged to create a culture of respect, acceptance and appreciation for differences.
David Shapiro To me, it has to do with finding ways to find specific jobs to match people with autism to the workplace. Most large & small employers are not disabled & do not know anything about autism at all. They need to learn about this diease & arrange their work settings to better serve those kinds of people.
Christina Gleason Get rid of the interview process for jobs that don't require the types of interpersonal skills that are required to be a ""good interviewee."" This needs to be done at a societal level, not a workplace-by-workplace level because making job applicants ask for an alternative to the interview process already tells employers that we are disabled, something they are not legally allowed to inquire about but could use such a request as a loophole.
Alyssa Stone, Dynamic Lynks Providing more supported homes, job coaching programs, and training for employers on how to make an accessible and inclusive work environment.
mother, guardian, and advocate Vocational training. Transition for people with autism is horrific. The colleges just aren't ready. Job coaches aren't ready. Businesses aren't ready. It's been families leading the way. Also, models for effective housing with behavioral, exec functioning and social supports.
Aerienne Amadis-Noel Fey, Autistic (ASD 2) Communities of ND people working together with different strengths and weaknesses. Accommodations and actual inclusion in the workplace beyond tokenism and lip service. Adapted interviews, straight forward expectations and not a bunch of subtext to wade through.
Christina Workplace accommodations. I've experienced so much pushback for basic things like noise cancelling headphones because people tell me I'm exhibiting ""unprofessional"" behavior. Again, workplace accommodations, learning to parse and understand [redacted] ""corporate talk"" and when someone's saying something just to look good with no intention on following through, the kind of jobs where autism and autistic traits could be a help and not a hinderance.
Forest Weld, Parent Services that enable autism-spectrum people to find a fulfilling job and succeed in the workplace. Aid them to navigate the social demands of job hunting and keeping a job. Also, importantly: strongly aid employers in utilizing hiring methods that are not so demanding of social interaction in order to evaluate skills, and utilizing management methods that allow for autism-spectrum differences while bringing out their strengths so that they can contribute. Such methods by employers and managers will actually help all employees. Services that enable autism-spectrum people to find a fulfilling job and succeed in the workplace, so that they can support themselves and live an independent adult life. Aid them to navigate the social demands of job hunting and keeping a job. Also, importantly: strongly aid employers in utilizing hiring methods that are not so demanding of social interaction in order to evaluate skills, and utilizing management methods that allow for autism-spectrum differences while bringing out their strengths so that they can contribute. Such methods by employers and managers will actually help all employees.
Sarah Longstaff Help autistic adults find employment that works WITH our sensory issues, not against them. I work in a bank that has music playing all the time. It is exhausting. I would love a job that is QUIET. My 18 year old daughter needs a job with little social interaction. Help us find those types of jobs instead of pushing us into sensory overload. My personal experience with VR services has NOT been positive.
Anonymous Autistic people are underemployed. Studies need to be done as to what support services are helpful in finding them employment and keeping it. There needs to be more research done on helping autistic adults finding employment.
Sidney Jackson, Association of Regional Center Agencies The Association of Regional Center Agencies (ARCA) represents the network of regional centers that advocate on behalf of and coordinate services for over 350,000 persons in California with developmental disabilities and their families. Their work includes collectively and carefully monitoring the services and supports for approximately 139,000 service recipients with autism, supporting many to achieve their personal employment goals by actively promoting and providing them opportunities to receive vocational training services and supports. ARCA appreciates the opportunity to comment on the 2021-2022 IACC Strategic Plan, specifically, Chapter 6, which is titled How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? The report notes that studies have indicated high rates of unemployment or underemployment for people with autism and that “increasing access to vocational rehabilitation (VR) services has not significantly improved employment outcomes.” Regional centers’ experience has shown that achieving Community Integrated Employment (CIE) for people with autism depends on multiple factors: agency collaboration, increasing successful community partnerships, accurate data analysis, and the recognition that permanent job placements require quality job development and vocational support. Building on other recommendations in the draft strategic plan, ARCA recommends this section include an objective that addresses the need for a longitudinal study, specifically on employment, to inform best practices in the development of collaborative approaches between VR, developmental services state agencies, service recipients and service providers. ARCA also appreciates the IACC’s ongoing efforts to enhance quality outcomes for people with autism and for its intensive focus on this critical issue. If you have any questions regarding ARCA’s input, please do not hesitate to contact Sidney Jackson in our office at or (916) 446-7961.
Anonymous More resources for those who didnt go to college. And for after college. Hr style help that it not part of employer and doesnt report to them. Help w govt and employer hoops. Help w customer complaint issues/legal trouble, overwhelming stuff
Anonymous The biggest impediment to employment for ASD adults are the unwritten and written social expectations that are considered a ""must"" for most professional jobs. Because ASD affects very basic aspects of a person's physical-social presence, there are expectations that ASD will never meet. This is a problem not with the ASD but with the expectation. How can the expectations of social behavior that are considered ""normal"" or ""best"" for professional interaction be mitigated so that the strengths of mind and mental visionary differences of ASD have an equal place at the employment table?
Somer, Autistic Employers need to better understand this sometimes invisible disease and not treat us as side show material. I'm not high strung, arrogant, difficult, lazy, stupid, or weird. I'm autistic. I'm a great worker when I feel valued, welcome, and understood.
George Eichhorn, ChildServe Resources to adult living options are significant service gaps. As individuals progress into adulthood finding the availability for supported living options can be difficult. Support services for job coaching, mentorship, and skills to promote independence are lacking, particularly as a child ages into adolescence and adulthood. There is limited availability of providers or options for adolescents/adults who wish to seek support to gain employment. Social isolation increases behavioral health problems and social skill deficits. Social Skills and Life skills training are critical for transition age children to ensure that they are prepared to handle the social and emotional challenges associated with employment and making and keeping friends. This can enhance their mental health as well as provide a support system beyond family. Healthy relationships, which includes healthy psychosexual behaviors and improved sexual health, are needed. Overall, there is a lack of services to address these various needs.
Philip Kahn-Pauli, RespectAbility We thank you for your dedication, service, and work advancing neurodiversity issues, supporting the independence of people on the Autism spectrum, and developing the new IACC Strategic Plan. Full Comments here: As the COVID-19 pandemic continues to play out and the economy evolves due to new pressures, intentional actions from public sector, private sector and non-profit leaders is needed. More important than that, people with lived disability experience need to be heard and valued. By soliciting input on your strategic plan, you are creating the opportunity to do exactly that. There are approximately 3.5 million Americans living on the autism spectrum and there are probably many more people who have yet to be diagnosed. Further, prevalence has been increasing over time and as of the 2020 school year there were approximately 717,000 students on the Autism spectrum in America’s K-12 system. Respectfully, Ollegario “Ollie” Cantos VII Chair Jennifer Laszlo Mizrahi, President Matan Koch, Vice President, Workforce, Leadership, and Faith Programs Philip Kahn-Pauli, Policy and Practices Director Nelly Nieblas, Manager of Policy, Advocacy and Engagement

Health: Ensure that autistic adolescents and adults can access needed physical and mental health care.

Respondent Response
Ashley Blanchard, Columbia University Medical Center As ASD research evolves it is essential to understand issues related to how people with ASD require targeted preventive and medical interventions. One first step is to better identify the causes of mortality throughout the lifespan.
Anonymous Health and quality of lifespan
Anonymous Healrhcare providers and facilities as well as all healthcare HMO's, PPO's and the like must provide genetic and related services and treatment to ASD clientele throughout their lifespan.
April Morome, Autistic person Mental hospitals don't always know how to help those with ASD when we are too depressed to go on in life, and they treat us instead as though we are bipolar but make us be in groups, change our routines as thoygh they don't understand we cannot take well to a lot of change to routines, etc., and they hadn't provided a therapist I requested for my autism symptoms saying to me that that is for what individual counseling is. They need to help in hospitals in that capacity, too, of counsling for those with ASD.
Anonymous Autistic adults need better access to mental health care and more therapists that understand autism. Often they are traumatised by bad social interactions as children and suffer from low self esteem, depression, etc. And they need help for that but from a therapists that also understands autism. And if an autistic person confesses they are transgender, they need to be listened to. They are not too stupid to know who they are.

High Support Needs: Ensure that adolescents and adults with high support needs on the autism spectrum have the support to meet their needs.

Respondent Response
Anonymous Please separate out severe autism. I see very few articles about Meeting the needs of people with severe autism. severe autism It’s left out time and time again Please separate the types of autism bc severe autism has gaps in research on all issues (turned away from ERs, no family support, no respite, no appropriate housing, no best practices for day programs
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation Meaningful and creative solutions for people severely impacted by ASD in employment, living options, and social opportunities.
Christina Newendorp Service systems for transition for those with severe autism are broken. In our case, we had to hire an attorney to go through the dispute resolution process to fight with our school district. The district wanted our son to graduate at age 18 before the end of the 13 year long HCBS waiver wait list. This meant he had no coordination from our Developmental Disabilities service upon graduation. Dept of Rehab-VocRehab pretended to serve our son while in high school, then dismissed him with a letter saying he was ""too disabled to benefit"" from their services, even though there were no services to replace theirs from DDS upon graduation. We finally won a mediated settlement from the school district that enabled our son to stay in school an additional year so that he was able to get off the wait list and create an HTS/home program to meet his needs. This is despite the fact that Congress wrote that IEP teams should consider service eligibility through age 21 into the Individuals with Disabilities Education Act. There are no housing options other than living with parents if your young adult requires 24 hour supervision (no group homes). There are very few DDS agencies who will work with individuals with severe autism and challenging behavior who require 1:1 support. Financial planning is navigating the complex SSI application process yourself, and you'd better hope parents have savings/other resources to exhaust to save for their future care. Community integration is minimal.
Anonymous There needs to be a formal plan that includes funding for where adults with significant level of needs to live in the community
Catherine Cornell All of the above as they relate to severe autism.
Jackie Allen Access to Medicaid waivers that are designed to serve the severe end of ASD. These families are in crisis and need help. Higher pay and intensive training are required.
Adrienne Benjamin As I said before, remembering that ASD is indeed a spectrum, meaning in the most simple terms from Mild, Moderate and Severe, there needs to be diverse opportunities and resources that meet the needs of everyone. I have watched your IACC meetings and continues to be disappointed that again and again the majority of focus seems to be on those who are Level 1. And please don't misunderstand, I don't intend to pit one groups' needs against another. What I am asking ( pleading) for is equal acknowledgement, representation and concern about those with Severe Autism.

Housing: Support housing programs and options so that autistic people can choose where to live and receive needed services and supports in their homes.

Respondent Response
Anonymous Housing with appropriate staffing is critically important
Michelle Williams There needs to be homes in the community that are staffed with highly paid, trained staff that can support these individuals. And/or these trained staff should be able to support families who support their people with 24/7 support when necessary.
Renee Mandell, mother It is best to start meeting in the home because travel can be a barrier for many.
Cyndi Kirby We need more options for housing. We need to add work programs that can assist people with fewer needs to find employment. For individuals that have higher needs programs that can give them the support they need along with a purpose (ie a job). More options for supported independent living. Most autistics need support as adults if we could have people that could come into the individuals homes to assist them with any needs they have to help them be independent of family if they want.
Susan Corry, parent of a dev. disabled young adult Access to safe, decent, affordable housing is one of the biggest barriers to leading as independent a life as possible -- and more importantly -- to positioning dev. disabled adults for success after their caregivers have died. “What will happen after I'm gone?” is a HUGE concern for parents. Moreover, many states try to impose unconstitutional restrictions on a dev. disabled adults’ ability to decide for themselves where they want to live. For example: most states have been closing institutions, which is a good thing. But they have moved too far in the opposite extreme. For example, many states assert that a privately funded, unlicensed home with more than 3 dev. disabled adults is “too institutional.” This attitude is driven by HCBS’s Final Rule, which is woefully unclear and open to dozens of interpretations. Any housing that doesn’t fit into a narrow, outdated vision of acceptable housing must undergo “heightened scrutiny,” which means different things to different states. This makes it virtually impossible for parents try to create affordable, sustainable housing solutions for their children and others like them. It’s impossible to scale nationally, and developers have no interest in helping this population, since there are no subsidies like there are for seniors, veterans and homeless individuals. To put it most simply, Medicaid’s attitudes towards housing MUST be revamped. Housing choices must be person-centered and based on individual choice.
Peter Mazure, Parent; Chesterfield CSB Housing [redacted] for the thousands on Waiver waiting lists in all 50 states. When their caregiver parents die, where will these people go? Into the streets?
Beth Mortl Housing is the biggest request I get from families. Everything is important, but transition in their 20s to affordable and safe housing. Learning daily living skills and working part time if healthy enough.

Inclusion: Services and supports should be available to all autistic people and include autistic input.

Respondent Response
Yvonne Federowicz There needs to be a much more inclusive setup, meaning inclusive of autistics from all groups, ages, genders, etc., for planning on support. It is absolutely impossible for a high-level organization to solve all the problems; this organization could, however, promote inclusion of autistics in autistic service development.
Suzanne Rossi Meet them where they are - engage them somehow. There are programs that work, I know, but not all people with autism can participate.
Anonymous - Ask autistic adults to guide policy rather than neurotypical parents of autistic people - Provide AAC, sensory supports, and other non-behaviorist assistance as requested by autistic people - Pass robust anti-discrimination legislation in housing, employment, and medical care to enable autistic adults to request necessary supports (such as working from home, access to stim materials, etc.) and to appeal discriminatory treatment because of ""poor behavior/attitude"" when it threatens life in any of those areas
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont Making. Sure. Suggestions And. Ideas. For. Adults and. Children with. Specialized. Learning. Needs. Innovative. Technology Transparency inclusion diversity equity for all including those citizens with disabilities.
Mollie LISTEN TO AUTISTIC PEOPLE. not ""autism advocates""
Autistic Self Advocate and current PhD student in Disability Studies There needs to be more understanding about the lived experience of LGBTQ autistic people.
Anonymous Same as previous answer
Anonymous Focus on research with individuals diagnosed with ASD as lead researchers in these areas — focusing on what will be of greatest benefit to those diagnosed and how they can be better supported in all of these areas.
carol staszewski ASK AND LISTEN TO THEM!!! Do some ableist and neuro-dominant supremacy work!!! Engage recipients of services in all discussions. Let go of parental model of control and 'worry.'
Natalie Crum, Rancher Toads Listen to us and shut down Autism Speaks
Lisa Morgan, Lisa Morgan Consulting LLC Let them lead the way. Talk to autistic adults. Find out what they need. Research gaps are due to non-autistic people setting research priorities.
Rappahannock Area Autism Council How do we determine what the needs are for people with ASD? How are they reached (especially as adults) - do current surveys for the ASD adult population or their families exist, how are they being implemented, who has access and are they sufficient?
Anonymous The lived experiences of autistic people (diagnosed as adults and as children, and across racial, ethnic, gender, and other categories) should inform services and supports. Ableism and stigma are risk factors that impact diagnosis and lead to a lack of accommodations in daily life (particularly when legally prescribed action is the only widely accepted method to access supports). Services and supports should come from this perspective, rather than one that medicalizes autism and regards it as something to be ""fixed.""

Lifespan: Ensure that services continue throughout the lifespan for autistic adolescents and adults and additional research is conducted to better understand how autism may change with age.

Respondent Response
Guohua Li, Columbia University Develop a model program that ensures the continuity of services for people with ASD throughout the life span. Right now, when autistic children grow out of the school system, they face the service ""cliff"" and many of them are left to fend for themselves.
Orla Putnam, University of North Carolina at Chapel Hill This should be a top priority, seeing as there is little to no research currently on autism and aging. So much of research is based around infants and children, and a big concern for teens, adults, and parents was the ""service-cliff"" that young adults face when they exit the public school system and lose access to services. I also interviewed older autistic adults who have no idea what to expect with their autism as they get older because there is no research in that area. Transition and adult services are so important.
Jenn Continue assistance through adulthood.
Anonymous It is great to see more recent focus on transition age youth and services directed to increasing employment outcomes. However, now adults are being left behind. Research should focus on BOTH TAY and adults in relation to adult outcome topics. All are needing far more research and financial supports to conduct such research including longitudinal studies. Remember folks are adults far longer then they are children (50 years + as adults compared to 18-22 yrs as children).
Freda Dias Adult services! Including services for people more severely impacted by autism. Day programs which include enriching activities, not solely based on what the autistic person can contribute, but on what can be done for them. While I want every autistic person to have opportunities to work, not all of them can, and that's okay. They deserve opportunities for socializing and learning, too.
Shilo Liebau, parent There is not much of a priority in terms of aging and transition. I wouldn't even know where to go to get these types of services.
Annette Raia, Parent Adult services -not enough to meet the needs of people.
Anthony J Thompson Need for a much smoother transition from turning 22 and going into adult services which are non existent. Much more funding on adult day habs.
Anonymous Stronger transition programs, stronger earlier intervention and more family support. Families need to be educated. The states resource coordinators to have too many children on their caseload. They are not able to get ot know families and provide resources to them.
margaret bennett adult services are poor. After age 22 service are poor.
Sherrie Kinard, Parent of 2 Spectrum Children Adult services and quality of life across the lifespan.
Gary Ames, Neurofeedback can be done at any age to substantially reduce symptoms of ASD for a preponderance of people with enduring results.
Cynthia M. Parkhill Again, I wish to amplify a response by the Autistic Self Advocacy Network: “Many autistic adults were not correctly identified as children, and lifespan research should include this population.” I wish to add that this research could, as an incentive to participate, include formal diagnosis. This would be a logical, and cost-efficient way to reach the “invisible generation” and ensure that their needs are met while building a long-term understanding about “lifespan” experience with autism.
Skylar Again, researching how autism looks in adults and teens would very much benefit us. It is so difficult to diagnose autism after a certain age, and finding out what we need in adulthood can only be found be talking to autistic adults. Most high schools in the US don’t teach the necessary tools to go into adulthood. This is bad for everyone, but double for autistic teens. Any supports I’ve had throughout high school and college were not enough, and I was treated terribly for needing the bare minimum in the first place.

Current Priorities Still Relevant: The Objectives as they are stated in the Strategic Plan reflect important current topics and issues in the field.

Respondent Response
Jennifer Degner, Early childhood special education teacher All of the above is so important. ABLE account and special needs trusts information is important along with all the above topics. I see isolation and recreational opportunities a challenge. Some of my former students experience challenges in school social activities and finding the interests that they truly enjoy MENTAL HEALTH. Parents fear for what jobs their child will be successful at. We need to ask employers and individuals with autism that are successful the questions … and those struggling… What supports, expertise, experiences helped make them successful or fail . The needs are so great. Families with more knowledge can better articulate.
Anonymous Health and quality of life across lifespan (if I can only choose one), but they are all really important
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult This is a greatly understudied area. Early into adulthood I developed issues with autonomic instability and autistic catatonia. These issues are documented but poorly understood and managed. Medical professionals are often unaware of these issues. Also, decreasing socioeconomic adversity faced by autistic individuals could provide great benefit to quality of life.
Catherine Martell, autistic, health care provider all of the above. high priority
Zahida Chebchoub health and quality of life aging adult services housing
Anonymous All of the above
Erin, Parent All of this. Autistic adults are a hugely underserved population.
Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis Once again, these are all very important. Please consider providing services for people based on what they need, and not take services away if they start to do well. If they are doing well because of the services that is not a sign that the supports are no longer needed.
Anonymous ALL OF THE ABOVE!! Lifespan services!! There is NO HELP for my adult son who wasn't diagnosed correctly until age 25. He has repeatedly been turned down for Social Security, and that is the only way he can get Medicaid or Medicare in Florida (unless he goes & has a child and the mother doesn't want custody.) Without any medical insurance (He is unable to get a job, and therefore ineligible for ACA coverage.), he has NO ACCESS to any counseling or behavioral health services. His resulting depression & anxiety have totally disabled him. I am 66; what happens when I die?
Lisa Schott, parent and caregiver To have THE BEST supports for families in transitional, housing, vocational training, employment, financial planning and access to affordable health/dental services in the world. All of these things equal a good quality of life. Community integration is evolving and has come a long way even in the last 10 years but that is due largely to disABILITY advocates who continue to message this.
Michael In my opinion the most important priorities and gaps in research, services, and policy issues are: health and quality of life across the lifespan, transition, and adult services including education, vocational training, employment, financial planning, and community integration.
Florencia Ardon This is a very important area that directly impacts the life of autistic people and their families/loved ones.
Angela W. EVERYTHING IS NEEDED AND ON REPEAT CONTINUOUSLY, the same as an ASD Person of any age. I would like to contribute
Tonja Nolan, independent education vocational training employment housing financial planning and community integration are all massive needs.
Anonymous There is so much lacking for adults. Housing, transportation, caregiver support, and employment are just a few. They have all of these supports while they’re in school and then suddenly they are thrust into adulthood and it can be very traumatic.
Alexis Oliver Williams Healthcare and quality of life, transition services, employment, life after high school and community integration.
Shelley These are all very high priority and understudied
karen barrett, barrett consulting incorporating selfcompassion into active daily life skills to support all of the above
Anonymous - Including this whole area as one of the top priorities in research and policy—we should not be abandoned and neglected by support systems once we reach adulthood; adults on the spectrum deserve dignity and well-being just as much as every other adult person
Sonja Miller, Parent There is a huge gap for all of the above when the individual cannot live independently and never will be able to. Research is an ever-changing area. Services are severally lacking at all ages, but especially once the person ages out of school. There should be more services that are required after leaving high school. ASD isn’t cured when they age out of school. Most of the time, the individual regress due to lack of immediate continuous services.
Shyla Patera, North Central Independent LivingServices, Inc. Every adult and child deserves the things and topics outlined in question six.I have answered part of this question in section 5 . I would like the autism community to respondhow many need and see Reasonable accommodations given in housing and transportation states have qualified allocation plans or ADA. transition planswhere Accessibility needs are outlined .If the autism community needs more features to benefit independent living in waivers,housing ,or transportation please let your fellow advocates know in states. I believe we need to grow the disability infrastructure as a whole by implementing ADA transition plans, housing Plans and Transpotation Plans with a person centered focus ! we need competitive Integrated employment!

Question Area Not a Priority: This Question topic should not be a priority in the update of the Strategic Plan.

Respondent Response
Michele Lopez, The Guidance center-Early Head Start Lots of research, diagnosis, services for older children, but what about the 18-36 month old child????

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
Anonymous Much greater accountability needs to be implemented to surveil and oversee all private prisons, ""troubled teen"" camps, residential health facilities, etc. Guardianships shall not be imposed without definitive medical proof of Autism/mental illness via blood/genetic tests, IQ tests, brain scans & legal counsel with due process given to the Autistic person, a right to appeal the decision, etc. Helping Autistics with citizen's arrests and private investigations of those who abuse them.
jean publiee when you have a pronouncement or policy issued, we want to see the research behind it in full. we want nothing held back and kept in secret. we have been robbed over the yearrs by secrecy and hiding information and we want the background issued in full now. we want the studies and we want them available to anybody who wants to get the studies. we have fraud fauci issuing pronouncement with absolutely nothing to back him up. nothing. he is winging it and that is wrong in science. and we want open scientific debate.there are scientissts better than fauci out there who are being dissed.
Alexandra Hernandez What happens to someone with ASD if both parents pass away with no trust established or guardian? The government has to provide a clear pathway.
Deborah Quality of life
Anonymous Increase funding even more to pay direct care staff what they deserve. It is an extremely difficult job and there is a big lack of training for these workers. Agencies for adults need training in crisis and behavior management and need people willing to work hard to help clients achieve goals. This all comes down to the needs for more funding.
Elissa Leonard Anyone who may have had such a permanent brain injury in childhood and did not have common vitamin B12 deficiency ruled out received negligent substandard medical care. This is a tough fact to swallow. Understand that it is hard to call out colleagues for failing to test and treat a now-common nutritional deficiency that destroys lives and wastes healthcare dollars. In fact, anyone taking folic acid deserves doctors who know how to spot common vitamin B12 deficiency. Let's retrain the doctors.
Elke Drayton With more Help Organizations. My Son has an life coach and he will be with him forever and that's a blessing to know, but we also need places where people can go if they need help right away like an Emergency Room for people with ASD.
Anonymous Making parents aware from an early age of services available to their child as they get older.
Bix Frankonis, Actually Autistic Often missing from research and discussion of autistic adulthood are the dynamics unique to the late-diagnosed (especially the midlife-diagnosed) and the challenges inherent for the late-diagnosed autistic in elucidating for the nation’s disability system the whys, hows, and wherefores of having “survived” for decades apparently without requiring any support and then “suddenly” requiring (potentially substantial) support post-diagnosis. While there’s increasing research attention to the mental health impacts of the intentional masking and camouflaging of diagnosed autistics across their lifetimes, less attention has been paid to the unintentional or unconscious masking engaged in by both the above diagnosed autistics and undiagnosed autistics—the latter of which is my focus here. Once, not long after my own midlife diagnosis, when reaching out to a local nonprofit that assists disabled individuals access support and services, I was blindsided by an incredulous and skeptical, “Did you really not know?” Due to the character limit, please see for the rest of this comment.
Melanie Curry, Ron Davis Autism Foundation It’s not only autistic children who can benefit immensely from access to Davis Autism Approach programs. Our interventions have also been repeatedly shown to enhance and empower autistic adults. While autistic children receive special education services while in school, after they leave school, they fall off what has been described as ‘the services cliff’. The A.J. Drexel Autism Institute in Philadelphia reports that after high school, most young autistic adults do not have jobs, career training or additional educational opportunities. They struggle to find independent living arrangements, maintain friendships, join in community activities, and pay for their own needs. There so many autistic adults in the US whose lives are in limbo – lost to the confusion and chaos of autism – when all they need is the right map to follow. The Davis Autism Approach program is that map. It provides a solid framework for adults to start to establish order in their lives; begin to create positive outcomes for themselves; and develop the ability to start taking responsibility for areas in their life they were previously unable to. It also gives adults tools for self-regulation, an inherent understanding of different types of relationships, and the ability to make decisions based on what they determine to be right or wrong for themselves.
Julie L Shaughnessy , Parent No wrong door no wrong questions
Gene Bensinger, Parent and Guardian Again, there is a very broad range of critical issue areas above that all require significant investment to ensure happy, healthy lives. Among these, I'd like to see mandated continuing education for all guardians of people who receive public funding. Annual physical examinations and health education of wards and guardians by a skilled medical professional should also be mandated.

Multiple Themes Addressed

Respondent Response
Lisa Wiederlight Too many of our children are left sitting on the couch after they graduate high school. We need to know how to help these individuals become employed, how to support their caregivers, and Premature mortality--how to address the reasons for it, and how to get this to the people who need it. Vocational training--what is currently available, what is effective, how to maximize opportunities in different environtments Housing--same Community integration--is it possible for all, and if not, what is a good alternative? There is an autism spectrum and not everyeone needs or want the same options here. Themes Addressed: Employment, Health, Housing, Lifespan
Kathleen Meyer There needs to be more funding for housing models for autism and IDD. Education of agencies providing services is key. Interventions are not successful without understanding the spectrum of the disorder. The assessments of people for services does not address autism making it hard to get the support the adults need. Currently there is no consideration for those who are more severely disabled who may need to remain in a ""sheltered workshop"" situation. There is disbelief that some people may need that for an extended time or indefinitely. Most people have the majority of their social life at work. Most people are lost if they lose their job. It is not different for our loved ones with disabilities, especially autism. I support trying to get them into the greater community. I don't support pulling the rug out from under people whose social life and rhythm of life are best in the vocational learning situation. We need a broader understanding of the whole autism spectrum, not rose colored glasses, magical thinking and assumptions that the autistic self advocates represent the whole autism spectrum. Themes Addressed: Education, High Support Needs, Housing
alvaro ryes, angels castle Housing and programs for young adults aging out of the highschool system. Grants they can use specifically for housing and programs designed for continuing learning and social activities Themes Addressed: Community, Housing, Lifespan
Margie Bruff, University of Colorado at Boulder I'll just reiterate some of my response from the previous question in case it is more relevant here: resources for driving (headlights, sounds, and ever-changing traffic patterns have been big challenges and sources of anxiety for me); resources in higher education (there is so much focus on ADHD, I was originally sent for ADHD testing after telling my university psychologists about my (now-diagnosed) autism symptoms Themes Addressed: Community, Education
Jane Horn Do strengths assessments to enable optimization of quality of life and possible employment. My nephew is being warehoused and some very considerable abilities are ignored. Also see my response to question 5. How can “community” group homes provide benefits of being in the community? Why doesn’t my nephew have meaningful programming? What about vocational programming? What happened to parent/family support programs? My nephew has auditory perceptual problems which frequently interferes with his understanding what is said to him. Staff then yells at him which is demeaning and does not help communication. Why is he housed in such a situation? Also, his disability check does not cover his smoking. Themes Addressed: Community, Employment, Housing
Kristen Herrett More job training and training geared toward those considered “lower functioning.” Also training in life skills more of an assisted living model vs a group home model. Themes Addressed: Community, Employment
AutisticallyReal, Actually Autistic Advocate Include cooking, banking, and how to fill out forms in high school. More shared living spaces for Autistic people. Helping caregivers navigate the transition by bringing more awareness of programs available to regarding housing, education and setting up trusts, etc. Require health care provider to go through training [redacted] presented by Actually Autistic people in order to gain understanding of requesting consent, allowing for more processing time, and the need to have an advocate or support person/animal with them. Most of all, expect competency, regardless of perceived support needs. Even non-verbal Autistic Folk can communicate, if one learns their ways. (PS most of us have wicked senses of humor, so we can make it fun!) Themes Addressed: Acceptance, Community, Education, Health, Housing
T. A. Meridian McDonald, Vanderbilt University Medical Center We need: *More research on strengths & social value of autism *Less research on the eugenics of autism which is further creating social stigma & marginalization *Better understanding of the strengths of autism & their developmental pathways so that we can scaffold autistic people toward autism excellence *Affordable housing with access to transportation *Research on how to increase tolerance & acceptance of people with autistic preferences, interests, & mannerisms *More research & services to better help autistic people cope with & overcome marginalization in society *Funding directed to the Department of Labor to help businesses better support autistic people *Research regarding how to help autistic people become entrepreneurs *To help autistic people further establish autistic communities. We need to be working WITH autistic people and not AGAINST them *More research and services to address co-occurring conditions in autism. This includes adapting and/or developing interventions suited for autistic needs (cognition, transportation, emotion, sensory, etc) *More research addressing insomnia, cardiovascular disease, diabetes, obesity. This research is NOT being funded for cognitively-able autistic adults because of major gaps in NIH funding priorities. Further, the NIH views autism as a ""primary disease"" and not as a ""marginalized group"" that experiences disparities in physical health and healthcare *To stop using conversion therapy on autistics at all ages Themes Addressed: Acceptance, Employment, Health, Housing, Inclusion
Anonymous Listen to us! Talk to us! I spent most of my time growing up expressing clearly what was upsetting to me and was dismissed as though I made it up. Most autistic people are often very honest and open about what they struggle with. And it doesn't take any interpretation. Just take us on our word. Each person is going to meet different challenges in society and so you have to be adaptive for those different needs. A lot of this will come down to how educated and understanding the various institution we go to (university, work etc). And again, it helps a lot of the people there already have an accurate understanding of autistic people. Sadly the most common case is no education or misguided education. If you are truly serious about greater understanding about autistic people, the best thing is to let autistic adults do the talking. There are so many advocates doing this work and they are an invaluable resource for our improved wellbeing. Themes Addressed: Acceptance, Inclusion
Anonymous Speaking generally, too much research focuses solely on children. There are many adults on the spectrum and there needs to be research and effort to assist them as well. As I just wrote, much greater effort toward employment of people on the spectrum is needed. In addition, it is essential, for autistic people and others, to work toward (1) raising the SSI asset limit; and (2) achieving Medicaid portability among states. Themes Addressed: Employment, Lifespan
Danielle Draut More transitional services. I think colleges need to a better job at this, since the parents are no longer in charge when the child turns 18. One of our son that went to Embry-Riddle did a great job with support services, the other child that went to App State they had assistance but was more difficult. I think finding out if they will have an unknow health issues would be helpful and what about relationships. I know my boys often still have difficulty with problem solving in groups of friends during conflict because their friends are typical and my son gets stuck with more black/white outcomes. Perhaps reaching our to large and small companies and helping young adults with autism find that employment match. Having employers have mentors and job coaching on board to help them navigate early on in their careers. More research on the young over 18 population and what happens as they get older and more on their own. How they will loss ( death of family member). Themes Addressed: Employment, Lifespan
Anonymous Autistic adults self-diagnosis' should be considered official as at this time, ASD screening and diagnosis is thousands of dollars and not covered by insurance. Autistic adults who self-identify Autistic must be treated respectfully when receiving medical care. Paperwork should be asked which method of communication they prefer so they may be treated appropriately. Pain is different for Autistic people. Workplaces should allow workers to wear earbuds/headphone/earplugs when appropriate due to noise sensitivities of the Autistic individual. Same with tinted glasses due to light sensitivities. Jackets for temperature sensitivities when work appropriate. Physically disabled Autistic people should be encouraged to work and asked how much they CAN work and paid an appropriate wage for their needs. Accommodations should be made of course. Housing must be accessible, safe, quiet, well-maintained. Disability payments must be higher. Themes Addressed: Employment, Housing, Inclusion
Parent There should be continuing education options that re life long. Job training, employer openess to work with adults on the spectrum, employer training on how to work with non neurological individuals. Programs like Medicare should not limit the amount of income such personnel can earn yo receive services. Placing persons in a position of existing below the poverty level to get help is almost cruel. Themes Addressed: Education, Employment
Anonymous We need research and policy to ensure Autistic people can safely access medical care and dental care. We need to reduce stigma about autism in the community by dismantling harmful autism stereotypes. We need more research into how non-inclusive environments and institutions contribute to poor mental health of Autistic people. Themes Addressed: Acceptance, Health
self-advocate We need more funding for adult autism services. Autism does not end after age 18. Here in Connecticut ,we have over 10,000 individuals on the waitlist for adult autism services. This is unacceptable. There needs to be more funding so that our adults get the services and support that they deserve. We desperately need more funding for adult autism services. Here in CT, we have over 10,000 individuals on the waitlist for adult autism services and we have enough funding to only take 5 people off the list a year. This is unacceptable. We also have a shortage of qualified services providers so it takes a while to get supports in place even after we get off the waitlist. There is also a need for supportive housing for autistic adults. Too many autistic people are living with aging parents with no where to go in the future. We need more employment opportunities and training for autistic people. We are capable of working and want to work but we need more support to get and keep jobs. Themes Addressed: Accessibility, Employment, Lifespan
Anonymous Schools need to revamp transition and prepping for adulthood. Adulthood w need greater training and funding- there service providers are not equipped to deal with level of need. Create training programs and have higher level of oversights. Greater funding into self determination initiatives for individual and their family with multiple options: apartment, shared home, resident. These places again need high level trained staff. Themes Addressed: Community, Education, Housing, Lifespan
Jane Kontoff More research is needed to understand how to best incorporate unemployed and under employed into their communities. Independent but supported living. Adult Services, Employment, quality of life across lifespan, community integration. Themes Addressed: Community, Employment
Emily, Mother of an autistic 4 year old. We need to protect our autistic children well into adulthood as well. Most autistic children just end up on the street if something happens to their family members. We need more centers for when they age out. More resources for autistic adults and more schools centered on therapies that are accesible to all tiers of families as far as income goes. These schools need to be quality. I know of a mom who had her autistic adult daughter malnourished at a center she was in. That is not okay. Themes Addressed: Education, Lifespan
Dr Pamela Hodges, MGH Need for job coaches, vocational training, life skills such as financial planning. Independent housing financial support vital for client to realize potential as an adult. Themes Addressed: Employment, Housing
Vanessa parrott The most important priorities and gaps currently are the lack of house of options, lack of adult care centers, and an almost complete lack of educational and employment opportunities Themes Addressed: Education, Employment, Housing
Stephen H Bradford See prior question. Enlarge the SSDI application process and subsequent granting of SSDI qualification to include the diagnosis of autism, with an accompanying significant impairment, as qualifying a person to receive benefits under SSDI. Increase programs for Autistic adults for community service or some type of community activity. Allow for autistic persons to increase their socialization. The state of PA has excellent support in this area but I understand many states do not. Themes Addressed: Accessibility, Community
Anonymous Services to transition to adulthood, social skills, job training Themes Addressed: Employment, Lifespan
Jessica Easton Job training, more case managers and housing. More creative options for housing beyond private group homes. Perhaps state owned small apartment complexes with 24 hour aids. Maybe states can look into renovating old motels/hotels Themes Addressed: Employment, Housing
Liz More focus on community support and acceptance would be very useful. More resources in improving life skills, social skills and other life necessities, especially in adulthood, are needed. Most resources available are for kids - but autism does not disappear in adulthood. Themes Addressed: Acceptance, Community
Anonymous Affordable housing options, educational and employment opportunities. Incentivize communities to support this underserved community Themes Addressed: Education, Employment, Housing
Cyndi Stephenson There is no support in college and there's zero support as far as therapies go for autistic adults who are not developmentally challenged. We could use support groups that link us together, peer groups guided by trained therapists. It's like once you hit 18 autism magically disappears and suddenly you're treated like you have a mental illness instead of a neurodevelopmental disorder. I have not found a therapist yet who helps autistic people with autism related issues, it's just a side note. And there's no clear diagnostic criteria for evaluating adults with autism who do not also have a history of developmental challenges. It took me years to find a neurodevelopmental psychologist who evaluated adults. I was 47 when I was diagnosed. My child was 3 when he was diagnosed. We have the exact same markers, his were just more pronounced because he was nonverbal. Themes Addressed: Accessibility, Education, Lifespan
Cindy Gutschke Vocational training and group homes with supervision. Many autistic children will be able to attend college with assistance, just as physically disabled persons are provided with those services. Themes Addressed: Employment, Housing
Brandi Timmons Transition age should be lowered to at least 12, possibly even 10. Parents should receive information as soon as a child is diagnosed about how to begin planning for transition into adulthood. Parents need to understand that there are things that they can be doing all along the way that will increase the opportunity for their child to become independent. Hands on skills training should be available to all students that want it during school. Students should leave high school with skills to enter into entry level jobs. Schools do not do a good job of preparing students for work. Themes Addressed: Education, Lifespan
Anonymous Offering employment development starting grades 9-12 and transitioning into adulthood with work study programs and education and incentives to employers to employ those with ASD would be a great start. The private employment sector has a large piece they're still missing when it comes employing individuals with ASD and the educational piece would be great start. Early Intervention/Education for school age children along with strengthened job development programs beginning in high school and transitioning in to adulthood. The financial piece always always always complicates it too much. The ASD already are at a disadvantage and for those who from a two income family at birth, there tends not to be any programs other than public school education. The parents are required to fund everything from birth-18 which places financial strain on already strained families who have a family member with ASD. Themes Addressed: Accessibility, Education, Employment
Angel Holladay Assistance past age 15 is needed, in education, communities, and in the work force. Families need help for long term assistance. Getting more info on how to help autistic adults in the workforce is highest on my list! Themes Addressed: Education, Employment, Lifespan
Rebeka Edge, Behavior Matters Healthcare with providers with more education in autism. Access to adult services, improved vocational training, community education and integration, incentives for in the job training. Themes Addressed: Accessibility, Health
Parent of Autistic Adult Inclusive programs and adaptive services at community colleges and universities. Job placement and career planning are virtually non-existent. Themes Addressed: Community, Employment
Eileen Nicole Simon, Lifespan care is also needed for autistic people who learned to speak during the first decade of life, or later. As for non-verbal autistic people, ways for increasing vocabulary must continue through the lifespan. ""Figures of speech"" should also be learned and listened for in the speech of others. Meaningful avenues of employment should be looked for, and tried. Themes Addressed: Employment, Lifespan
Leona Schlesna I have no idea other than to offer work for those who are able to do so, and community housing for those who are able to live in such. Themes Addressed: Employment, Housing
Anonymous My son with ADHD, ASD, ODD, communication disorders, etc. is only 12 so I haven't experienced this yet but hope ALL of those services will be easily accessible. They are ALL EXTREMELY IMPORTANT AND VITAL! Adults with ASD shouldn't just be put into any job position they can get but need to be a good fit for the individual and company/business, etc. Themes Addressed: Accessibility, Employment
Anonymous Right now Children with Autism have more services available to them. We need to expand services for adults with Autism who need even more support and services as they navigate life and daily activities that they didn’t need to manage as children. We need more self directed services and independent living options where people with Autism can receive services in their homes instead of being institutionalized. Themes Addressed: Housing, Lifespan
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. As previously stated: specialized therapies, help identifying our strengths, accommodated college or vocational training, independent living 101 class, job opportunities, special interest groups, community and familial support without pity or ableism, doctors who know what to look for and how to work with the unique experiences of autistics, care teams for pregnancy and postpartum stages, understanding supporters and friends, education and assistance, for us and those around us, to help us through life’s major changes and transitions. We have to learn how to balance the life that we want with the work we have to do to have it, maybe at a different pace, or in a different way, than a neurotypical would. We need more places to be accepted just as we are. We need people to listen, and not speak over us when it comes to our health and our livelihood. Autistic children become autistic adults and autistic adults become autistic elders. We go to college, have jobs, drive cars, get married, have kids, we grow old…autism doesn’t just stop at 18 like our support does, if we were even lucky enough to receive a diagnosis and support before that point. Themes Addressed: Acceptance, Community
Amy Morosini Education, vocational training and social integration programs Themes Addressed: Community, Education, Employment
Katlyn Community integration I think is a huge one. Humans are inherently social creatures, and chronically being lonely/isolated is not preferable. I think mental health considerations should be taken into account for all other forms of transition help; vocational schools should still allow for stimming and emotional regulation. Themes Addressed: Community, Employment
Michelle Hecht, Private Practice People with ASD need more supports for independent living skills (ILS), work, and social domains. There is an overemphasis on classroom skills for teenagers with ASD. Instead, teens and young adults with ASD need to learn to independently wake up and go to sleep, take their medications, perform basic self-care, make friends, communicate with peers, have intimate relationships, engage and sustain in meaningful work. All of this requires more intensive focus, during the teenage years, on these skills- with qualified staff. Themes Addressed: Community, Employment
Lauren Vogler Here in New Jersey, when a student with Autism reaches age 21, they are abruptly moved out of the educational eligibility system and into limbo. There are no options available for people with Autism who are not “high functioning” to continue their education, and the majority of adult day programs are little more than babysitting. Whatever strides the individuals have made in acquiring skills are easily lost without continuing education. This situation needs to be fixed by establishing opportunities for adults to continue to progress. Themes Addressed: Education, Lifespan
Maryse Hile, Parent of adult child with ASD who receives services What priority does each state place on physical well-being? Does it make it easier for its clients to choose healthier eating? Does it expect its day programs to emphasize physical activity? Ideally, all states would have well-developed/staffed vocational training programs for those interested/capable of participating. But given the constraints of funding and difficulties in identifying/maintaining community partners, sustainable volunteer activities should be created, especially for those for whom ongoing work is unlikely. Housing is the most pressing issue facing aging parents of children on the spectrum. Only those families with immediate need can expect to obtain housing without waiting for years, even in well-funded states. And in poorly funded states, even they can and do wait. Yet the only way parents can responsibly, gradually ""fade back"" and allow an adult child to learn from others is when they live outside the family home. The prevalence of this need clashes with available resources for addressing it. What if parents contributed a sliding-scale, monthly amount to house their adult child in a supportive residential setting? The child would have SSI for defraying costs (usually), and the parents could make a direct payment to the residence to offset expenses of facility maintenance, staffing, materials, etc. Even parents on tight budgets might find the payment is more than recouped by their newfound ability to work more, as caregiving duties are relieved. Themes Addressed: Accessibility, Health, Housing
Anonymous (1) Supports and programs for autistic students to attend college or trade school, (2) supports and services to obtain and maintain employment, (3) residential/housing. Themes Addressed: Employment, Housing
Patti Kennedy When the time for independent living (as is practical) becomes evident in the autistic person- more practical applications for HOUSING and WORK must be incorporated into community based programs. Supportive housing -(community based living in varying degrees of independence) and meaningful work that allows the autistic person to use their intellect and interests to contribute to a process or product is necessary. Farm living / working is often a very appropriate setting for people with sensitivities to over-stimulation and a connection to natural life. We must encourage more and more businesses to consider hiring autistic individuals by providing necessary on-boarding supports for both employer and employee. These programs exist but not in nearly enough cases and places. Liability and profitability challenges hold most employers back from incorporating these hiring practices. When employers stop seeing the hiring of autistic people as a community service and start seeing the value and skills these employees bring to the table as inherently necessary to their business - we will make progress. The days of 'Autism Awareness' are behind us. We need to promote the value of hiring Autistic workers. WORK WORK WORK Themes Addressed: Employment, Housing
A.K. Increase support for adolescents and young adults with ASD. More support to public school systems in this arena to support a transition to adulthood is key. Although there is a lack of supports for many families on Medicaid in several states or those with private insurers who deny therapy, there is an even greater lack of supports in the community for adolescents and adults with ASD. Vocational training, housing options, financial planning programs for parents to better prepare themselves for an adult child with ASD is key. Themes Addressed: Community, Employment, Housing
Jennifer Dapkins Vocation and housing Themes Addressed: Employment, Housing
Janay We need employers to develop a better understanding of how to work with employees that have ASD. They need to be more flexible with how they operate to incorporate the needs of individuals with ASD. Once students leave elementary school, as time goes on, there are fewer and fewer resources to support these individuals. We need the same amount of supports across the board. However, if they were placed in a learning environment to meet their needs, as time goes on, they may be more successful and need fewer supports. Though long term they will most likely need supports for housing and living. As I reflect on this question, what really comes to mind is that more research is needed on how to best teach these individuals, how best to help society to understand ASD, and create more employer knowledge and understanding of how these individuals may differ from the ""typical"" employee. There is a need for ""out of the box"" thinking to help these individuals integrate and be understood by those around them whether in schools or the workforce. Themes Addressed: Acceptance, Employment, Housing, Lifespan
Heidi Parr, Case Manager, Seven Counties Services There needs to be a specific autism waiver for children and adults with ASD, that starts upon diagnosis. There needs to be covered therapy services, nutrition, and behavior services. Educational opportunities need to be improved. Themes Addressed: Accessibility, Education
Anonymous Employment, housing, and community-based supports are all huge priorities and need more resources devoted to research and implementation. Themes Addressed: Community, Employment, Housing
Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability Also need much research into programs for adults--vocational and day programs, residential models--that actually work, that actually provide therapeutic, enjoyable experiences and that provide the structure, intensive staff and professional support and nurturing relationships needed by this population. As adults enter old age, we need specialized residential options. So many of those elderly with severe autism end up languishing in nursing homes. Just as we need specialized, highly structured and intensively staffed residential options for adults with severe autism, we need the same geared toward and modified for an elderly population. For those adults with severe autism, I'd be much more focused on quality of life than so called ""community integration"". That means researching programs and residential options that actually contribute to a good quality of life. Let's not make assumptions or make stuff up about what's best for this population. Let's actually gather facts and information and make policy that way! Themes Addressed: High Support Needs, Housing
Suzi Hiatt, parent & service provider Capriccio Elite, LLC There are significant gaps in service for teen to adult years. Public schools tend to focus primarily on the younger children and by the teen years, there is little expectation for success or participation. Upon ending public school service, there is very limited funding for services. Themes Addressed: Education, Lifespan
Wayne, Parent We need all schools to teach ""Life skills"" from kindergarten up. They need to learn about shopping, talking, money, etc way more than job skills because many will never hold a meaningful job. We also need to provide housing across the country and a program that allows clients federal funds to spend on their own services under the supervision of a caretaker when needed. This would be similar to NY state's self direct program. Themes Addressed: Community, Housing
Carol Tatom, Autism Response Team Transitioning to adulthood can be frightening for families who risk losing all of the support they fought hard to receive during their early childhood and adolescent years. The wait list for housing assistance is currently over 20 years long. To be added to the waitlist with a appropriate outcome, families would have to add their children to the waiver before they are conceived!! Something needs to be done in this area to better assist families. I'm not sure if it's lack of funding or lack of community resources, but it is a problem that is spoken of often by autism families with older children getting ready to transition to adult years. I would also like to see affordable options for continued education or life skills programs. The few we have in our local North Texas area are so expensive that only the very wealthy can afford them and insurance will not pay for those services. It would be nice if a community-based nonprofit could be created to better assist this age group at a statewide level and I'd love to be on that board to assist with that project! Themes Addressed: Accessibility, Education, Housing, Lifespan
Tom Rickels, X-Excel (day services provider) Adult services and vocational training. Themes Addressed: Employment, Lifespan
Jill Goldstein Now that my son is an adult, I’m keenly aware of the lack in support after age 22, aka “the cliff” in services. He needs a meaningful day and the ability to live in his home community when I am gone. Adult services-housing in home communities. It is next to impossible to find and if you do, there is no guarantee that it will last. Themes Addressed: Housing, Lifespan
Sonya Emerick Autistic adults who can live independently almost universally need homemaking, meal prep, and errand services. This includes adults who do not have intellectual disability or physical disability. Managing sensory processing and communication differences is very consuming cognitively and energy-wise. Autistic adults who can live independently with supports are being overlooked, supports are not provided, and suffering and instability occurs. Inclusive education is really important. Look to MCIE/Think Inclusive. Look to Communication First. Look to the incredible YouTube webinars being produced by the New Jersey Autism Center for Excellence. Look to Shelley Moore’s work. People are already designing and innovating the kinds of shifts in programming and perspective we need for equitable education. We need to get this innovation to the table, fund it, learn from those already doing this work on the ground with students and clients. We are so resourced as a community to do good work if we can just figure out how to share and collectively benefit from the brilliance out here! Themes Addressed: Education, Housing
Colleen Allen, Autism Alliance of Michigan More effective programs are needed for students during the transition period that support individuals with certification and career-technical options. The transition from educational to vocation service is not seamless and ultimately leads to poor post-secondary outcomes for so many. Most colleges and universities do not have uniform, effective supports and services for students with autism See question 3 regarding need for safe, quality living/housing options for those who are more severely affected. While we agree that inclusion in community (living and working) is always the goal, for those with higher support needs, policies and funding are limiting quality options such as farmsteads and intentional communities. A close look at those policies that prohibit these options/choices is needed, in addition to increased funding to support them. While employers have begun to recognize the unique skills and talents of people with autism, the service system is still lacking vocational rehabilitation professionals who understand how to support our population on the worksite. We need to address the safety of individuals at risk for wandering and other risk situations that exist in the community. Mandated funding/policies for GPS devices, using technology that is adaptable to the unique challenges of people with autism. Safety plans with local law enforcement and first responder training that should be integral to existing, required training is needed. Creating the community supports/education/training that makes community venues accessible, safe, and inclusive are crucial to quality of life for our families. Technology that allows individuals with less significant care needs live independently needs to be explore and funded, as well. Themes Addressed: Community, Employment, Lifespan
Anonymous The Medwaiver provides quality of life services for both the client and family. The lack of funds and now limiiting criteria for autism is severely impacting the supports needed throughout their lifetime. Housing is almost non exisitant. With 1 in 54 children being diagnosed how will we house them? we can't provide with our exisiting community. Themes Addressed: Accessibility, Housing
Anonymous ABA Therapy programs for ASD young adults AND adults designed programs to help them use technology, social skills, employment, community based activities to gain self esteem and independence. Increase funding for providers who have group housing with on site staffing trained to work with ASD residents. Themes Addressed: Housing, Lifespan
Jan Carpenter, parent of two handicapped children 1) THERE IS A HOUSING CRISIS IN THE US FOR DISABLED PEOPLE. Three out of four people with disabilities live at home with a parent, relying on them for all of their basic needs like preparing meals, hygiene, transportation and connecting to the outside world. These parents are aging and don't have options. 2) REVISE THE OLMSTEAD DECISION: Many states only allow for 4 disabled people to live together in neighborhood houses because of The Olmstead decision and fear from the feds regarding this. This housing model does not work for everyone. Disabled people should be able to choose their housing setting like every other American. Some disabled people would like to live in communities similar to 55+ communities with activities, transportation, nursing, and amenities geared towards their needs. I would propose letting 55+ communities include more than their 20% quota to include disabled. This would save money because both populations have the same needs and with this would also help with the caregiver shortage 3) Provide vouchers where the disable person could pick from different private and public housing options and communities. 4) Give businesses tax incentives to hire the disabled. 90% of disabled people are unemployed and want to work. This would also save on SSI benefits. 5) 40% of the homeless population is disabled so these incentives would help both populations Themes Addressed: Employment, Housing
Cheryl Once a severely non verbal child hits 22 not 18 there are finally some services to help a parent to care for that child. The first 22 years of their life the State/Government just ignores them. If you are lucky enough to be born into a rich family then they might have a better chance in this world. Health and quality of life. Most severely autistic children because there is no services for them and the parent to care for them until they are 22 have been living in extreme poverty probably for most of their life. Quality of life in extreme poverty isn’t very good. At 22 funds are finally offered to help with basic needs. So now they can move from extreme poverty to regular poverty. The Government/State does not make it easy for severely autistic people to get help and maintain it. Everything needs to be updated on a yearly basis not every 30 years and it needs to be simplified. Stop making everything so difficult for this community. Medicaid isn’t the best health coverage. Good luck finding qualified doctors that will accept Medicaid. They say Medicaid pays very poorly and not in a timely manner. When you live in poverty you usually live in a high crime area. Themes Addressed: Accessibility, Health, High Support Needs
Parent Focus on health and quality of life across the lifespan, adult services, including education. Themes Addressed: Education, Health
Lori, Guardian and speech therapist Adult services with people on the autism spectrum are almost non-existent in some communities. There are few doctors and specialists who are able to advise parents and guardians on various issues. For example, a young man whom I am guardian of has weight issues related to his extreme food aversions and it was recommended he see a nutritionist. However, there are no nutritionists I have found that know about this issue. Themes Addressed: Accessibility, Lifespan
Denise Wildrick, Autistic Adult and Parent Adult autism services across the board. Mental health across the board. Abuses, manipulations and the like of those with Autism as they exist in an adult world. It is so much more than is currently reported and we need to do something about it. 1 on 1 services with decent wages is really the answer to theses problems. Along with appropriately structured housing. Wages to those with disablities that are not less than minimum wage and split between them and their vocational program. Treat them with respect and dignity as individuals that can speak for themselves and advocate for themselves. You had better have people with autism give in person comment and not just here via online public comment. Nothing for us, without us. Themes Addressed: Lifespan, Employment, Health, Housing, Inclusion
Nancy Kearney, Parent adult autistic man in Massachusetts Transition into Adult services, community integration and HOUSING (big) Themes Addressed: Community, Housing, Lifespan
Meg P Make sure they have a good support system. We shouldn't have to walk a tight-rope without a safety net. Also get rid of a corrupt system where people have to rely on health insurance through employment rather than have a right to healthcare access. Themes Addressed: Accessibility, Community
Eleanor Wildflower IACC must work to remove barriers for adults seeking diagnosis later in life. They must also work to improve the quality and availability of home and community based services and make it easier for autistic adults to find gainful employment. Autistic adults are disproportionately likely to suffer abuse at the hands of caregivers, to be institutionalized, and to live in poverty. Themes Addressed: Employment, Lifespan
Anonymous These are critical. I honestly think this might be the most important area of all so far. However, I would also want to be sure that any focus or future research/policy is neurodiversity-affirming. Policy issue of funding for autistic-supporting interventions in adulthood. Themes Addressed: Acceptance, Lifespan
Elizabeth Bartmess Adults with ASD desperately need psychotherapies for complex trauma that take into account the fact that abuse for us is not ""over"" - we're often targeted for abuse and mobbing at work and school and in social settings even as adults. We also need interventions for practical daily living issues that come up like inability to consistently make meals for ourselves or inability to handle complex paperwork due to executive dysfunction. Research on pregnancy, childbirth, and parenting while autistic—it's really notable that ""adulthood"" in this question doesn't cover the extremely common experience of parenting! Research on how to identify and appropriately refer adults with ASD when they show up in therapeutic and medical settings. Research and education on how ""standard"" communities—for example, workplaces, churches, schools, etc—can globally support autistic adults without requiring them to be diagnosed or to disclose a diagnosis. Access to housing and benefits that doesn't require navigating complex paperwork. Themes Addressed: Accessibility, Community, Health, Housing
Justin Pimentel Providing resources that enable autistic people to have equal opportunities as their peers relating to education, salary, health resources and more should be the goal. More research needs to be focused on directly improving the lives of autistic people, by improving support, accommodations, and the resources available to them. Themes Addressed: Education, Employment, Health
McKenzie Hanson Art, Music, Math, Science. Apprenticeships, Assigning mentors, life coaches, therapists, advisors for finances, budgeting. Expanded access to community programming for basic life skills made available to all. Libraries already do this but how can we encourage the autistic community to take advantage of resources? Maybe it’s an app that connects you to local or online resources to explore for differing needs and this is provided for free access to learning or community engagement opportunities. Therapists should just be covered in taxes, for everyone. It would help so much in actualizing the nation and screening for autism. Themes Addressed: Accessibility, Community, Coordination
Ryan ask autistic adults; listen to them; and implement what they say require and only fund Community Based Participatory Research more services support opportunities after they turn 18 or 22 and leave school more supported employment/employment accommodations more supported living opportunities more research about what it means to be retired or elderly and autistic and find out from them what they want more and better mental health access more opportunities to earn a living wage caregiver help/support; personal assistant help/supports Themes Addressed: Employment, Inclusion, Lifespan
Helen Leung Increase funding for adult services and housing support, do more research into WHY Autistic people die earlier, increase funding for community integration programs Themes Addressed: Community, Lifespan
Tosha End arbitrary laws that encourage the filicide of innocent autistics and instead encourage the prosecution of their oppressors. Have their educational accommodations in place, ensuring the school will work with them with no hesitation. And have them advance to an inclusive community college where they will be favorably regarded and given many different options on how to advance in society. Then hopefully they can find an inclusive workspace in which to showcase their natural talents and live a peaceful life. Themes Addressed: Education, Employment
Andrea Grover We also need research on workplace accommodations for autistic people. This is the second-highest priority for autistic people. Autistic kids grow up to become autistic adults. There are very few services that specialize in supporting adults, including workplace accommodations, career counseling, and literally everything else listed here. We need more research on autistic people's experiences of aging so we can be better prepared to support changing needs and abilities as we age. Themes Addressed: Employment, Lifespan
Brittany Diane Daniels As an autistic woman myself, I need more research done on needed live long supports for autistic people and getting health insurance coverage extended to autistic adults over the ages of 18, 19, 20 and/or 21 years old, because I am beyond tired of having to go through a high deductible state health insurance plan here in Georgia where it will make me pay $75 until I meet a $2500 in network deductible or $5000 out of network deductible to be able to get needed speech therapy and the fact non of my other in person therapies are covered as well. As an autistic woman myself, I need more doctors, nurses and mental health psychiatrist and psychologist to learn about autism and mental health disorders together along with understanding how we react differently, meaning we tend to have more reactions to prescribed medications than the normal population. I also need for pediatric doctors/nurses to help autistic people who have aged out of being able to see a pediatric doctor/nurse to help us find an appropriate regular doctor/nurse we can see as an adult for at least a once a year checkup. I also need there to be better supports for autistic people trying to or already have reasonable accommodations through disability services at any colleges/universities here in the USA. By making sure we have the needed supports we need to live in the community instead of a nursing home or institution. Helping us get jobs that pay good for autistic people not getting any SSI and/or SSDI and Medicaid and/or Medicare and keep those jobs. We also need better help going through job interviews as well. Themes Addressed: Accessibility, Education, Employment, Health
Shannon Borg, autistic parent to autistic children Public education in businesses and school about what autism looks like and what it doesn't look like. More information for businesses and workplaces on how to support autistic employees and making adaptive work places. Adapting work schedules so autistic people can work on time frames that are helpful not exhausting. Support for adults in general with all aspects of life. Budgeting, housing and all the adulting activities that we are not ready for. Themes Addressed: Community, Employment
Anonymous Better policies on getting disability payment. Increase in transition services to best support autistics throughout the lifespan Themes Addressed: Accessibility, Lifespan
Asa Transition and adult services, health and quality of life Themes Addressed: Health, Lifespan
Helen English, Children's Home of Wyoming Conference Employment and educating the employer and co-workers on how to work with someone with autism is very important. People need to grasp the concept of working with someone who doesn't understand social que's. Patience is required. Housing is another big issue. Where do they live when their caregivers pass? We need housing and staff who trained in working with non verbal people. They need to know all the special needs of each person like who has significant sensory needs, who has trouble with loud noises and what to do if they live in an area where there is a lot of noise. So where the housing is located is also very important. Themes Addressed: Employment, Housing
Anonymous The questions should expand into areas of higher education, supports and services in the area of ​​work for people with autism. Continuity of health care supports when they enter adulthood, and that they have legal services so that they know their rights to legal custody, when they reach adulthood. With your support, we can give people with autism the support they deserve. Themes Addressed: Education, Employment, Lifespan
Anonymous The IACC Strategic Plan objectives track research investments, funding and information related to seven topical areas. The projected increase in the population of individuals with autism demands solutions that benefit the individual, families, service providers and the broader community by providing life solutions with employment and societal integration. IACC should advance services to autistic adults after reaching the “services cliff” to build upon acquired the life skills to enable meaningful employment with dignity and purpose. The existing housing and supports services provide living accommodations but enable a trend towards “institutionalization” unless they also address broader quality of life needs of community accessibility, meaningful employment, life span healthcare issues and community integration. IACC should advance research in areas which the Portfolio Analysis Report identified as consistently less funded than other areas: Services, which includes evidence-based practices in community settings, received 5% of funding; and, Lifespan Issues, which encompasses research to address the needs of transitioning autistic persons to adulthood and throughout the lifespan, received 2% of funding. IACC should address gaps in research and programs that build a bridge between the autistic world and the broader community through programs that bring residents from home-centered, parent-based care via pathways to independent living with meaningful employment. IACC broadened the objectives to incorporate ?quality of life? attributes into the research/services areas. To ensure consistent and effective implementation across all areas, IACC should explicitly define ?quality of life? in a holistic manner to include safe residential care with supports and services; effective and evolutionary healthcare beyond basic physical and mental health to lifespan care with aging related co-morbidities; training beyond basic life skills to include transition to independence, community access and navigation, social engagement; cultural enrichment and gainful purposeful employment; and, equity in community opportunity, accessibility, acceptance and integration. IACC should retain the current strategic plan structure to assure continued clarity of policy objectives and continuity of outcomes, with changes made as needed to cover underserved issues and gaps in services. Beyond Parent-based Residential Care The projected increase in the population of individuals with autism demands solutions that benefit the individual, families, service providers and the broader community by providing life solutions with employment and societal integration. IACC should advance services to autistic adults after reaching the ?services cliff? to build upon acquired the life skills to enable meaningful employment with dignity and purpose. The existing housing and supports services provide living accommodations but enable a trend towards ?institutionalization? unless they also address broader quality of life needs of community accessibility, meaningful employment, life span healthcare issues and community integration. IACC should advance research in areas which the Portfolio Analysis Report identified as consistently less funded than other areas: Lifespan Issues, which encompasses research to address the needs of transitioning autistic persons to adulthood and throughout the lifespan, received 2% of funding. IACC should address gaps in research and programs that build a bridge between the autistic world and the broader community through programs that bring residents from home-centered, parent-based care via pathways to independent living with meaningful employment. IAAC should endorse programs which advance partnerships between housing developers and host communities to provide affordable housing, job training and employment. The benefits would be to increase the availability of affordable housing, provide income that enables the individual to become independent and self-supporting; advance a skilled and trained workforce which allows employers and the broader community to benefit from the unique skills and abilities of a neurodiverse workforce; and, better integrate the autistic individual with the broader community. IACC policies should advance funding incentives which promotes partnerships between housing developers and host communities to increase the availability of affordable rental housing; provides tuition assistance for vocational training; and, leverages partnerships between housing providers and academic communities to develop programs to develop vocational skills of the neurodiverse population. The IACC Strategic Plan should address gaps research, data and performance measures related to employment that leverages the unique skills of the autistic individual, and advance solutions which connect individuals with high technology jobs that provided meaningful income and needed services that benefit the host community. IACC should advance research to remove the barriers to participation in a vocation, develops the individual?s unique skills for employment, and better integrates the autistic individual into a neurodiverse workforce within the host community. The interventions should begin early while the autistic person is in home-based care and transition from basic life skills training to advancing social skills, social engagement, vocational aptitude recognition and development, and community integration. IACC should address gaps in research and performance measures to include technology to promote safety, health and well-being, accessibility and sensory friendly features; technology to promote best practices for vocational training, job preparation and support; performance measures to match the individual?s aptitudes will job skills; identify and maximize the inherent skills that can be leveraged to support development to full potential; and, provide a continuum of services to assist the individual on the path to independence through integration with the broader community in a vocational setting with a neurodiverse workforce. IACC should advance partnerships between the housing/employment providers and the academic/research communities to develop programs which identify and develop vocational skills of the neurodiverse population, by leveraging and using existing facilities and employment programs as ?living laboratories? to gather the data and measures which define successful techniques and better guide future programs. IACC should endorse programs to expand healthcare and services to better educate and train health care providers on treatment and care of autistic individuals over life span issues, including research and services to address aging related co-morbidities; and, programs to train first responders and public safety personnel on how to recognize and respond to neurodiverse individuals. Themes Addressed: Community, Employment, Housing, Lifespan
Cheryl Wilson My daughter is 30yrs.old now the law really needs to change it needs to be a lifespan programs because after they graduate high school there isn't nothing out here for them my daughter is on level 3 which is the lowest level an the most challenging level she's nonverbal,aggressive behavioral ,intellectual disabilities,destructed behavioral the stress that family are under like mines really needs the help and support their child was receiving in school for the lifespan of the adult/child Themes Addressed: High Support Needs, Lifespan
Anonymous Adults are left out of this equation usually. Be more specific. Same w any emphasis on women, minorities etc Accommodations that ACtually work in college settings would be HUGE. Tons of autistic folks drop out. Suicide prevention. College course accommodations including extended end dates/flexibility. Same in h.s. Autistic mutual learning groups. Learning from autistic people. Themes Addressed: Lifespan, Education, Inclusion
oldladywithautism, autistic elder Simply finding and training a cohort of workers who are willing to care for older adults in any manner will be a challenge. Institutions of all kinds are under severe stress and there is not enough help in terms of employees to make good care possible in almost any medical situation from doctor offices to hospitals, to nursing homes and institutions, care homes, etc. It is already a crisis. don't forget that all autistic people are not children. There are more autistic adults in the USA than there are children and most of them remain undiagnosed. Diagnostic services for all ages and better diagnostic criteria can help the burden on social service agencies by allowing many adults with struggles enough self understanding to be able to self accomodate and seek help for social struggles through counseling, support agencies, and other services in their communities. Themes Addressed: Accessibility, Health, Lifespan
Anonymous Self-regulation support, transitioning support into tertiary institutions and workplaces, supporting goals related to autonomy and living situations, supporting Autistic individuals with high and complex support needs. Themes Addressed: Community, Employment, High Support Needs
Allison As autistic people grow up and age, their services should age with them. If they go to college, a counselor should help them get whatever accommodations they need. If they are working, their workplace must know what accommodations are needed. Since social situations are difficult for autistic people, they may need assistance during job interviews. When choosing a job, the workplace environment and how much interaction with coworkers and the public should be considered. For those who cannot work, other ways of engaging with the community should be set up. If new caregivers are needed, they should start before the old ones leave if possible. Themes Addressed: Education, Employment, Lifespan
Anonymous It's important to understand how the needs of people with ASD change as they transition into adulthood and start living adult lives, and as they age and reach the end of their lives. It's important to ensure that they have the skills necessary to participate in adult life, and it's important to identify which skills they struggle with so that they can receive support in exercising those skills for as long as they will benefit from that support. It's important to ensure that they have access to the same opportunities that people without ASD have access to and can earn adequate income. Themes Addressed: Community, Lifespan
Ren Koloni Services for autistic people cannot be focused solely in schools. We need services throughout our lives. Part of the issue is that autism is often portrayed as a childhood disability. This means allistics do not expect us to need services as adults, and autistic people are not prepared for transition to adulthood. Access to educational and vocational counseling that honors and utilizes our strengths as autistic people - our sensory capacities, our special interests, and our cognitive patterns - is crucial. As often as possible, we should be supported by other autistic people, or at least autistic people should be visible in these programs. HCBS should not only continue to be a priority but should be expanded to people who do not realize that they have access to it. I reiterate the importance of addressing high suicidality and autistic burnout as prevalent crises in our adult lives. Themes Addressed: Community, Education, Employment, Lifespan
Anonymous How can we train mental health professionals to feel comfortable working with autistic adults? What tools are available to support them in learning about autistic body language and communication styles? What tools can be created to support autistic individuals in retirement? What can be done to increase accessibility of healthcare environments for autistic individuals? (Also, almost all other public environments as well?) What changes to the designs of public spaces would allow them to be inclusive of people of all neurotypes? How can employers be trained to most effectively support their autistic employees? How can we reduce the stigma against autistic individuals so that autistic employees can work safely with their employers to create work environments that support their sensory and communication needs? How can we develop access to services that function for autistic individuals? (service that require phone do not work effectively for many autistic individuals) How can teachers, administrators, and curriculum designers be trained to create curricular materials and learning experiences that support learners of all neurotypes and take into consideration that students may need to demonstrate their learning in different ways, based on their communication and sensory needs? How can employees who interact with the public be trained to effectively interact with individuals of all neurotypes, including autistic individuals? How can they be most effectively taught to interact with individuals who have different communication needs? How can institutions be effectively modified to support adult and aging autistic individuals? What resources are necessary to support autistics through adulthood as they age? How can we design medical facilities to function most effectively to support autistic individuals? How can medical spaces be created that create less sensory distress? How can employers be trained in ways to support autistic employees? They need access to information that goes beyond out of date stereotypes and teaches employers to work with their employees to support their sensory and communication needs. Themes Addressed: Acceptance, Education, Employment, Health, Lifespan
Anonymous 1) Provide a range of supported housing options. Some people will need a little support; some will need help with almost all aspects of daily living. 2) Provide supported employment for those who can and want to work. 3) Provide recreational and social options so people don't sit around watching TV all day. This could include virtual options as well. 4) Prioritize belonging in the community, however that looks for different individuals. 5) Help families plan for the future of their autistic children as they age. This may include paying families to care for their adult children, since the level of care their adult children need often precludes working outside the home. Themes Addressed: Community, Employment, Housing, Lifespan
Anonymous Transition, housing, community integration. Themes Addressed: Community, Housing, Lifespan
Anonymous Suicide rates for autistics are very high, so consider that when you think about premature mortality. A big part of the suicide rates is that a lot of autistics are square pegs trying to cram themselves into a round hole, usually because neurotypicals are pressuring them into doing so. I talked about barriers for autistic parents in my answer to the last question, and even mentioned narcissism. If a social worker is told that a person is an unhealthy narcissist, then don't place the child with them and have them be a supervisor even if they're kin. Especially if it's a newborn baby, and even if the basic needs are being met. If you want reunification, then don't set the parent or parents up for failure, and offer accommodations. I wish finding nice housing could be easier to afford, and that I could graduate from college with all of the services I need (which I'm not getting at my community college) having been met. Full-time employment would be a dream come true, but not all autistics are good in the STEM areas (I'm terrible with those areas). Businesses that aren't related to those areas need autism employment initiatives too. I'm sure there are other autistics with similar problems. Themes Addressed: Acceptance, Education, Employment, Health, Housing
Sandra Lee, Autistic adult I already covered much of these in my answers to questions 5, but it bears repeating: For me, the most pressing need is for research into autism and aging. Most autism research focuses on children for some reason, even though most autistic people are adults. Among other things, those of us in middle age and older are noticing changes, particularly in our sensitivities (which often seem to increase with age) and executive functioning, but we're limited to sharing anecdotal evidence among ourselves. We need to know what to expect, in order to plan for our futures, or to recognize age-related cognitive changes that are ""normal"" for us vs, something that requires medical investigation. we desperately need a better understanding of autism and aging, as well as better, more informed support in education and in the workplace. Themes Addressed: Education, Employment, Lifespan
Anonymous Autistic adults who did not receive a diagnosis in childhood often struggle to find a clinician who can competently diagnose autism in adults. Autistic people often have unique strengths that could be an asset in a job, yet they are underemployed and have a high rate of unemployment. What changes to hiring and employment practices would create inclusive workplaces for Autistic people? Some Autistic adults go through a cycle of excelling at school/work, burning out and having to quit, excelling, and burning out again. What types of supports can help prevent Autistic burnout, and how can Autistic people recover from burnout? Many Autistic people are sensitive to noise, yet few Autistic people can afford to buy a single-family home. Therefore, many Autistic people are living in multi-family dwellings and apartment complexes where they are constantly exposed to the sounds made by their neighbors. For Autistic people living in Adult Foster Care homes, the situation may be even more extreme. What is the impact of these noisy living situations on Autistic mental health? Themes Addressed: Accessibility, Employment, Health, Housing
Anonymous Related to answer to Question 5; Our 32 year old son with autism whose intelligence does not fall low enough to qualify for supports, services or housing even though his behaviors and needs prevent him from being employed, managing life skills, obtaining housing or receiving support to help him manage life skills. This population has totally fallen through the cracks of a system that provides more for those who can function more independently than he can even with lower intelligence. Themes Addressed: Inclusion, Lifespan
TP *Additionally I think it is critical to get a post-diagnosis program in order to support the integration with identity as an extreme minority in this society who is now a key target for abuse-Again Ideally run by Autistic people themselves ( read: therapists are NOT helpful here) who actually understand the paradigm we are dealing with... and who know the context fully... *Also UBI (universal basic income) is also always a good one to have on the table- food/vitamins/shelter-this would instantly change the world as ASD folk actually are extremely productive more so than the average person, when we are run by different principles than the ones imposed on us.... Deffinately edicational programs for neurotypicals on the double empathy problem. We aren't less than- we are in a different paradigm, and one that neurotypicals do not have empathy for and are ill suited for. Unfortunately we become the only ones who compensate and that is when violence is most likely to happen- when there is lack of education on the otherside for Neurotypicals...Extremely critical once again to prevent misunderstanding and violence and mislabeling and underestimation of inherant capabilites because of lack of knowledge of how ASD people actually thrive and function and how different our needs are compared to the rest of the population.....Programs to help us with our true needs, not ones that others expect of us...would be unbelievable for the economy and innovation....Currently we do not have such a voice...and worse are mislabeled... Better privacy protection for ASD folk- better diagnosis help and suicide prevention for women and girls...better detection and education for professionals.. Themes Addressed: Accessibility, Community, Inclusion
Anonymous In my experience transition is poorly done, there is no real vocational training and no real employment. Socialization is still too limited. Themes Addressed: Community, Employment, Lifespan
Nicholas Elizabeth Faby More alternatives to conservatorship/guardianship, more access to free/low-cost adult diagnosis, more affordable supportive housing for disabled people, and improving SSI/SSDI and preventing discrimination in employment. Themes Addressed: Accessibility, Community, Employment, Housing
Aishah 6. The main thing is to not treat adults that are autistic as if they can’t grow and change. We are not stunted humans we are diverse and unique. Meeting the needs of adults with ASD is taking the time out to validate a unique human experience while also having ways to provide supports whether that’s especially trained service animal or having a specific hotline that autistic people can call when they fall into an inevitable suicidal ideation fit. Having a hotline for autistic people would significantly help people on the spectrum when we need to talk to somebody who understands what we’re going through because in my experience most people that you will encounter in your life do not understand what autism is and how to help somebody with autism when they need help. I’ve had trouble personally getting especially train service animal because I am not blind but I have autism and hearing issues and a lot of emotional regulation issues and as an adult who has lived on their own by themselves having especially trained animal and those dark lonely times as an autistic person would have significantly helped me and probably prevented some of my lowest moments where my life almost ended. It goes beyond an emotional support animal with autism. (I am doing text to speech on these answers due to burnout so please excuse any typos) Themes Addressed: Community, Inclusion
Autistic Self Advocacy Network Question 6 is the only question that specifically focuses its research objectives on lifespan related issues. Unfortunately, Question 6 only accounted for only 3% of all funding for autism research in both 2017 ($9.5 million) and 2018 ($13.3 million). In total, Question 6 received the smallest total amount of funding amongst the IACC Strategic Plan questions. Of the small amount of funding that Question 6 received, 62% of it was allocated towards “research supporting the transition to adulthood.” While ASAN agrees that the transition into adulthood is a critical period, funding imbalances shortchange other critical lifespan research. Autistic people undergo the same range of life events as non-autistic people and spend the majority of our lives as adults. Our needs in mid-life, our experiences with marriage and parenthood, and the ways our health and disability might change as we age, all deserve serious consideration, research, and support. ASAN recommends that the IACC prioritize the development of longitudinal aging-related studies of autistic people of a wide variety of backgrounds, socioeconomic statuses, genders, and ethnicities, examining how autism manifests over the lifespan, what outcomes and barriers are experienced by autistic adults, and how these things are impacted by race, gender, access to services, and other factors. Many autistic adults were not correctly identified as children, and lifespan research should include this population. Themes Addressed: Inclusion, Lifespan
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin Approximately 5.5 million autistic adults are living in this country, yet much of our focus remains on autistic children. We must address issues specific to the adult population to better support them–social isolation, parenting as an autistic adult, aging, grief, etc. Definition surrounding what geriatric support looks like in the autistic community is missing. There is a troubling lack of housing available for adults with disabilities. This issue is crippling for many families and must be addressed. Expansion of post-secondary educational options and supports is needed as is increased vocational support. Resources for caregivers trying to create pathways for their loved ones with no clarity and little support. Options for people in crisis. Address system limitations that keep autistic individuals in poverty by forcing them to limit earnings so as not to lose social security funding, etc. Themes Addressed: Accessibility, Education, Housing, Lifespan
Martina Kuzenski The best way to meet the needs of autistic adults is to have supports and services catered to adults. As previously commented, there is a lack of supports for adults due to the myth that autism can be outgrown in adulthood. Not only is this not true, but there are adults who are getting diagnosed as autistic as adults. There also needs to be stronger supports for autistic people with low- to medium-support needs. Regarding employment, 80% of autistic people are unemployed or underemployed with most autistic people being told to not disclose their autism due to stigma and lack of awareness. There needs to be employer-focused education about autism and the strengths while simultaneously training on the supports needed for the best environment. Autistic people can do jobs other than cleaning-based jobs. Themes Addressed: Employment, Lifespan
Anonymous housing for those with more complex communication and behavioral needs. employment for those with complex needs funding for social /recreational programs to reduce isolation, loneliness evidence based practices for adults on the spectrum housing for adults with behavioral challenges employment for adults with severe communication and employment challenges Themes Addressed: Employment, Housing, Lifespan
Anonymous This is very important, especially keeping ABA out of it. It is unrealistic to prepare students for a highly controlled institutional life where someone is always there to reinforce their behavior, because our world is not like that. Doing that only prepares them to live in further institutions, and never to reach their full potential. We need more supportive decision making research, self-determination theory research, and pathways for youth who did not get a high school diploma to go to college and/or trade school if they want. I am working with a student right now who needs 24-7 support, cannot speak, and is really wants to go to college. But, his school district has used lawyers against his family to stop him from completing a regular high school diploma. If he has the support workers he needs, he can succeed. But if people are too cheap and ableist to give him those supports, he's lost to frustration and heartbreak. Themes Addressed: Community, Education
Jessica Hardy, Independent As an adult with ASD, I find that getting on the spot advice for everyday situations, especially social and professional skills to help me network, grow as a professional and cope with the everyday struggles of being an adult in workplace. Just having a social emotional therapist or counselor that can help me process or deescalate an issue that might snow ball and detract from my effectiveness in the workplace. Someone to represent me if I have a meltdown, or confer with my employer one-on-one if I feel that I am being discriminated against because of a communication breakdown or ""weird behavior"", or if someone calls me ""stupid"", or tells me to ""grow up"". Someone to help me get my meltdowns back to zero times a year. Just like how Middle School and High School have Social Emotional SpEd, I believe a similar resource should exist for Adults. An effective, vetted, and widely available program or practicing office that can provide guidance, training, feedback (when trying to mentally process of situation), and professional representation that deters toxic work environments due to communication breakdown or discrimination. I am a biracial (Black and Native American) female, age 32, and I struggle to find resources available in Georgia that give immediate crisis intervention over the phone, functional tools and resources to help me thrive in the workplace and sometimes home. I have a hard time facing discrimination in the workplace and I rarely disclose my condition out of fear that it will hinder me rather than help. I need efficient awareness, coping tools, counseling and representation to prevent discrimination and communication breakdowns in the workplace so I can earn a living and be the productive member of society that I KNOW I am everyday, not just on a ""good day"". Themes Addressed: Community, Employment, Lifespan
Anonymous Adult services, premature mortality Themes Addressed: Health, Lifespan
Jennifer We need more programs in order to transition into adult eduction, employment, learning life skills, housing. More college programs should be available for those on the spectrum, as well as scholarships. Themes Addressed: Education, Lifespan
Anonymous adult services, vocational training Themes Addressed: Employment, Lifespan
Tom Whitehurst While many of these issues are important, by far the most important over the next 20 years is that we need dramatic investment in housing/communities for the adults with real (severe) autism who are currently living with aging parents who won't be around forever to care for them. First and foremost, the IACC needs to understand that people with high functioning ASD do not speak for the more severe, real autistic, adults. These self advocates have no comprehension of what adults such as my son, who has minimal verbal skills, need and want. The IACC needs to recognize that ASD is not some blessing that many of these self advocates claim. Those people who go around dictating how my son should live and be treated are causing great damage to the potential for adults with ""REAL"" autism to live in a safe and secure community where they can thrive. The number of adults with real autism is growing rapidly, but the housing options are barely growing thanks to some really bad people, who think that they are helping. Themes Addressed: High Support Needs, Housing
Corrie Whitmer As I mentioned previously, it is important that autistic children have access to integrated, accommodating classrooms. Autistic college students need easy access to healthcare and appropriate accommodations. As adults, autistic people need access to support for job searches and vocational training, as well as regulations that protect their rights in the workplace. Intellectually disabled adults need access to robust life skills education, plain language resources on various parts of adult life, and plain language resources on various healthcare topics. Autistic people also need protection from housing discrimination and resources for when the owner of a rental property ignores their sensory needs. Additionally, existing resources such as those for homeless people, sexual assault survivors, abuse survivors, veterans, et cetera need to build in the inclusion of autistic people, including intellectually disabled, physically disabled, and nonspeaking autistic people. Given the autistic suicide rate, suicide/crisis hotlines really need to train their staff on how to respond appropriately to autistic meltdowns and shutdowns, and how to deal with semispeaking and nonspeaking callers. Themes Addressed: Community, Coordination, Education, Employment, Housing
Peggy Hamby, Speech Language Pathologist Too many students are considered college and career ready because they get good grades in high school. The attrition rate in college is huge because of the lack of executive function training to help with organization and problem solving. So few people within the school system are able to provide this training due to lack of funding and shortage of personnel. These are the individuals with the highest earning potential but they are often un- or underemployed. The lack of supportive living situations for children with autism and mental health disorders has a severe effect on our community as a whole to benefit from their knowledge and skills. Investment in this population will bring high returns. Supported employment with qualified coaches would bring a large return on the investment. Financial support for companies that employ individuals who need extra coaching should be made available as well. Themes Addressed: Education, Employment, Housing
Richard Conn Often adults on the spectrum age out of their support system. Parents die or are unable to help their child and no other family members are available. Community based housing which incorporates essential services such as meals, social work and support for health care and social interactions is almost completely unavailable. Many of these individuals will become isolated, homeless, unnecessarily ill, enter the criminal justice system or the mental health system. Housing based on community with supportive services can offer a life of inclusion and both mental and physical health. These facilities could combine and share individual’s budgets for services helping to provide more services to more individuals. Please focus on adult housing with supportive services as a priority Themes Addressed: Community, Housing, Lifespan
Bek There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Rachel Zanoni There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Anonymous There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Anonymous Transition and dignified employment, housing in a safe community and community integration Themes Addressed: Community, Employment, Housing
Anonymous Universal basic income Actually affordable housing for someone existing on $1k or less in benefits. Freely available, not aba obviously, text and telehealth based therapy and other medical services. Premature mortality is the result of poor support over a lifespan. Quit stealing ""high functioning"" disabled labor because most autistics don't have behavioral healthcare and can't always know that they struggle because they're autistic. Quit using words that select for us in general hiring processes and allow us to work jobs that we are passionate about if we must work at all. UBI would solve a lot of our problems as adults. Give autistics free public transportation that is not confusing (major cities in Europe already have this one figured out for you really) Quit expecting autistic people to work and allow us to exist as nature intended. Again force medical providers that work with us to understand ADHD, and make telehealth and TEXT especially for non verbal people. Our verbal responses are sometimes poorer than our written communication and that effects our care immensely. Themes Addressed: Accessibility, Community, Employment, Health, Housing
Sandra McClennen There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Anna R Myers I believe I responded to this question in a previous on already, but vocational training is a great aspect, help with getting jobs that best fit the skills and wants of the autistic person. More opportunities to find affordable housing with easy maintenance. No more no pet policies in homes, this is just a bad policy in general but it is also ableist. Themes Addressed: Employment, Housing
Aster A service that could be useful for autistic adults would be education on how to operate in a workplace, and also about how to manage finances. When it comes to infrastructure, something that would be useful to address is transportation. Many autistic adults struggle with driving, and understanding why and what alternatives or support could be provided could make an immense difference to those people. Themes Addressed: Community, Employment
Julie Grant The US is woefully ignoring those who are aging out of the educational systems. Adult persons with autism need purposeful work and opportunities for education. Themes Addressed: Education, Employment, Lifespan
Jennifer Reppond, parent of ASD teenager / doctoral student Insurance does not cover expenses for our kids. We spend in upwards of 5Xs the amount on our kids for their health and wellness. Health! Educate parents (and doctors) on good diets (chicken nuggets at every meal will not help their child). They need to understand what it means to actually be healthy. Peer training (schools and work); need professional development for school teachers; need guidebooks for parents; we need doctors who understand our needs and not ignore us when we tell them our experiences; need health training (and our doctors need to be aware of this too - too many doctors do more harm than good with people on the spectrum); There needs to be nice, affordable housing (such as some of the private housing available) in nice areas, staffed by nice, caring, knowledgeable people where our kids can be independent but have a watchful eye over them. Themes Addressed: Accessibility, Education, Health, Housing
Damaris Ramos, Ron Davis Autism Foundation, Inc. We need to focus on education, services and acceptance in society, school and the workplace. Themes Addressed: Community, Education, Employment
Anonymous Housing, community activities and medical care for those with moderate/severe autism are desperately needed. Even in California, there are very few programs that meet the needs of these individuals. They are often ignored and downplayed. Themes Addressed: Community, Health, High Support Needs, Housing
Nina There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ We would also suggest research using health outcomes, as overall health determines quality of life; further research shows that people with brain disorders die on average 20-25 years earlier (source: National Alliance on Mental Illness.) Transition services need to be started early throughout childhood, not at transition age, beginning with giving young children choices. Employment, adult healthcare, and housing are issues. Finally, families need to be aware of Supported Decision-Making (see and rather than taking away the civil rights of the individual. We would recommend collaboration with the Parent Centers ( for educational outcomes, Family-to-Family Health Information Centers (F2F) ( on healthcare, and Centers for Independent Living ( as well as Parent Centers and F2Fs on transition to adult life. There are also national TA centers funded by the US Departments of Education and Health and Human Services focused on transition, including Got Transition (healthcare-US HHS MCHB), RAISE Transition TA Center (transition to all aspects of adult life-US ED OSERS) (, and National Center on Healthcare Transition for Youth with I/DD (US HHS ACL), among others. There must be service coordination of all the moving parts as well as consideration of therapies as medically necessary at home as well as related services for special education. Services need to start in early intervention and continue after transition to adult life as there is no recover/wellness model as there is regarding mental health. In addition, there needs to be awareness of mental illness co-occurring with autism and services for those dually diagnosed with DD/MI (developmental disability/mental illness). There is a shortage of “beds” for mental health crises which is even worse for the dually diagnosed population. Utilization of mobile/crisis response, which has decreased institutionalization for children and youth with mental health challenges, should also be considered for individuals with ASD and/or dually diagnosed individuals. Themes Addressed: Coordination, Employment, Health, Housing, Lifespan
NICOLE LEBLANC LACK OF HCBS SEVICES FOR ADULTS W/ ASD W/O INTELLECTUAL DISABILITY LACK OF AFFORDABLE HOUSING LACK OF MASS TRASIT PEOPLE W/ ASD ARE UNDER-SERVED IN VR SYSTEM WE NEED MORE $$$ FOR JOB COACHING FOR ADULTS WITH ASD We need better training for doctors, health providers on health disparties and needs of the ASD community in healthcare settings Doctors must get mandated training on ASD We need to end Benefit Cliffs in SSDI for adults with ASD We need alternative treatments for GI ISSUES IN ASD Invest in College programs for adults with asd Access to more therapists-require them to take medicaid, medicare Expand SSI,SSDI More social skills training programs VR counselors specialized in ASD Themes Addressed: Accessibility, Community, Employment, Health, Housing
Crystal The utter lack of care for the needs of the severe Autism population. Need for training for adult population providers. Housing, in home help for families. Help for people when parents are gone Themes Addressed: High Support Needs, Housing
Lisa Jeanne Graf Push for employment opportunities in all careers- not just IT, etc. Autistic people have a huge variety of career interests. Put the focus on employer education- not expecting employees to mask 24/7 to get and maintain employment. I would like employers to not discriminate on disability during interviews and at work. Also many opportunities for entry level work are for youth. People with disabilities might take longer to get their career going or find their best career fit. It would be great if mid life workers are also given entry level opportunities especially in government jobs. In addition in my state of MA I could not get into a policy program for a masters because I had a low math score. Doing away with testing to get into programs and then offering any needed remedial classes would be much more useful for providing more access to education. There is barely any research on woman and older individuals. Please allow this and don't have it only be with individuals with diagnoses because that leaves out a lot of people and just reinforces stereotypes. Menopause is a time a lot of people realize that they are autistic because their sensitivities become more felt emotionally. Also please let it be easier for individuals with a child with a diagnosis to get a diagnosis too. Just about all health issues believe that if one family member has a condition, there is a higher change that you will too. This fact should make it easier for autistic individual to get a diagnosis but it actually doesn't seem to be considered as a factor. Themes Addressed: Education, Employment, Health
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force There are huge research gaps on how to address access to housing and how to serve people with significant needs on the continuum of services and supports, including those with multiple medical complexities and those with significant challenging behaviors. There is momentum on employment issues, however that hasn’t necessarily translated into an evidence base of employment strategies that work for people with ASD across the spectrum. More research is needed to demonstrate how effective practices can better serve people with severe ASD and how to rapidly scale those services across the country. For example, the Workforce Innovation and Opportunity Act established an Advisory Committee on Competitive Integrated Employment. The Committee developed bipartisan policy recommendations to address many of these barriers. The IACC could review and recommend that relevant agencies implement these proposals. Furthermore, recommendations should be developed that address policy barriers that disincentivize work for people with ASD who rely on Social Security and Medicaid. Address existing service gaps for underserved populations with ASD. Underserved populations often experience barriers in receiving supportive services such as Vocational Rehabilitation and HCBS. When they are connected to services at all these services are often less effective in supporting under-served populations. Themes Addressed: Accessibility, Employment, Housing
Lindsay Shea, Drexel University - Need to focus on understanding the needs of aging autistic adults 1. Appropriate behavioral, social, communication and sensory supports to maximize community participation and engagement (including relationship development) 2. Employment supports 3. Housing 4. Opportunities to promote community engagement 5. Mental health support provided by clinicians with expertise in understanding the mental health needs of individuals with ASD 6. Support and respite for families and caregivers 7. Support to bolster the acquisition of life and independent living skills 8. Support from primary care and specialty care medical practitioners who understand how to provide needed medical and dental care to individuals with ASD 9. Training of law enforcement professionals to understand the needs of individuals with ASD 10. Crisis and outpatient supports 11. Supports during periods of transition 12. Opportunities in Higher Education settings 13. Innovative programs and models through Medicaid Themes Addressed: Community, Employment, Health, Housing
Anonymous As stated previously, there is a grave need for meaningful, long-term residential placements for individuals with intensive support needs. Options for residential placements in which individuals with intensive behavioral needs can learn new communication, daily living, social, and job skills are very limited. Further, for families who do wish or are able to continue supporting their child in the home through adulthood, continued behavioral intervention services, medical services, family support services, and day programs are critically needed. Currently, individuals with ASD often ""age out"" of community-based therapy programs between 16 to 18 years of age with extremely limited options beyond this point. Families need help navigating adult systems of care for their child with ASD, especially those who already experience disparities in accessing systems of care themselves. In turn, adults with ASD can reach their full potential into adulthood. Themes Addressed: Housing, Lifespan
Alicia Munson, The Arc Minnesota This discussion, like all others, should be led by Autistic people. Greater emphasis needs to be placed on Autistic leadership in developing research and recommendations. In the past, parent-led advocacy hasn’t supported self-determination nor self-direction of Autistic children, young adults, and adults. From an early age, Autistic people should be supported to communicate in ways that work for them, and help ensure their needs and preferences are prioritized. This must carry through adulthood, with the presumption of competency and the right to support in whatever way is preferred for them. We must transition away from guardianships and conservatorships, to natural supported decision-making structures that honor the wisdom of each person. Any “interventions” given throughout the lifespan should be research-based, aimed at enhancing individualized outcomes across the social determinants of health, and/or focused on preventative measures. Take, for instance, water safety- a common skill taught to children before they reach adulthood. Autistic people are 160 times more likely to drown, and 32% of parents report a close-call. However, water safety and swimming lessons are not covered by insurances like Medicaid. Adaptive swimming may be offered, but not all Autistic children require adaptive swimming. Themes Addressed: Inclusion, Lifespan
Anonymous Meeting the needs of autistic people as they progress into adulthood includes acknowledging, and accepting, that autism does not go away as a person gets older. For some, autism becomes more apparent as more and more is expected of them. Needing the needs of autistic adults means asking the autistic community what it needs, instead of listening to neurotypical lead organizations such as Autism Speaks. Themes Addressed: Acceptance, Inclusion
Dr. Andy Shih, Autism Speaks Research has highlighted practices that have been effective in employment, post-secondary education, and healthcare transition. However, these practices have not been scaled up across different contexts and regions. A big limitation has been the assumption that environmental modifications necessarily lead to participation and improved outcomes, even when the environmental barriers that have been addressed in research are narrowly confined to physical environments. Environmental barriers should be broadened to include attitudinal and interpersonal communication challenges that are important for acceptance of individual differences. Most research in this area has studied process-level variables and has yet to discover practice-level parameters to mitigate barriers and increase engagement. In the clinical realm, we have little information on how autism affects the aging process and many mental health assessment tools may be inappropriate for autistic individuals. Autism sensitive assessment tools and best practices are needed to understand and address the many health issues that come with aging and can affect the quality of life. Even a greater unknown is how a person’s autism affects aging and related health issues (i.e. do neurodegenerative diseases present the same way in autistic individuals?). Here again understanding the biology could be of great help and could portend future aging issues, similar to what was seen with specific genes variants and risk for dementia. Themes Addressed: Community, Health
Council of Autism Service Providers One of the ways that the IACC and its community partners can meet the needs of people with ASD as they progress into adulthood is to ensure that they have access to meaningful behavioral supports, including applied behavior analysis (ABA), across the lifespan. ABA can help autistic people engage in meaningful self-advocacy and connect to the community around them. This includes accessing employment and community activities, living safely in their own homes, and engaging in healthy lifestyles that can benefit them both physically and mentally. Themes Addressed: Accessibility, Lifespan
Kim Musheno, Autism Society of America There are huge gaps in research on residential supports and housing and how we can serve more individuals in the community. We also need more research on how to serve people with significant needs on the continuum of services and supports, especially those with multiple medical complexities and those with significant challenging behaviors. With the additional agencies joining the IACC, we hope that the Committee can facilitate better coordination between HUD, CMS and other agencies responsible for coordinating a federal response to the severe housing needs of those with autism. Themes Addressed: Coordination, High Support Needs, Housing
Anonymous ASD does not magically disappear when a person turns 18 or receives a BA degree. The few colleges that offer support to students on the spectrum exclude graduate students from these programs and this must change. It's great that programs to place people with autism into jobs exist now but they don't go far enough. The unemployment rate for adults with autism is still over 80%. These programs must also work to keep people in their jobs once they get them. Getting a job only to be laid off or fired every year is not helpful. Themes Addressed: Education, Employment
National Council on Severe Autism, National Council on Severe Autism Every day the NCSA sees a dire, escalating need for more options for adults with severe autism — including day programs, employment, housing, behavioral care, and medical care. Research is needed to help facilitate the full continuum of care, particularly for those with severe autism who have the least access to programs and housing, and should focus on the following: • Ways to sustain and expand access to ICF-DDs as a critical part of the national safety net for the severely disabled • Ways to target HUD housing subsidies for the severely disabled incapable of earning a living or caring for themselves • Ways to properly implement HCBS person-centered care free of common myths about the settings rule that would unduly restrain options absent any true legal mandate • Ways to dramatically improve support for family caregivers • Ways to minimize neglect and abuse of adults with autism Themes Addressed: Community, High Support Needs, Housing
CommunicationFIRST There is a dearth of actionable data on the state of autistic transition age youth and adults both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of them: (a) are institutionalized, jailed, imprisoned; (b) languish on Medicaid HCBS waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan
Tiffany Glass Our experience is that the most important gaps in all the above pertain to an absence of the infrastructure to supports for autistic individuals who need robust AAC in order to communicate. We support CommunicationFirst's position on this issue: ""There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. "" Themes Addressed: Accessibility, Lifespan
Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services Mentorship by other Autistic Adults, providing education to workplaces, community living settings, and professionals on Autistic adult accommodations, modifications, and support across settings is important. Neurotypical people need to also better understand and accept Neurodivergent ways of communicating and living. The double empathy problem has a significant amount of research supporting it, and should be a stepping stone towards better acceptance across settings. Themes Addressed: Acceptance, Inclusion
Anonymous Increase access to home and community-based services to allow autistic adults to live independently in their communities Increase access to educational and vocational programs for autistic adults who want to enter the workforce Change current laws/policies that prevent disabled individuals from being able to work and still receive disability benefits Increase accessibility of public transportation systems Increased access to home- and community-based services for autistic individuals - with proper supports in place, it is much more likely that an autistic person will be able to access and navigate their communities Themes Addressed: Community, Employment
Levi Miller This has a lot to do with a lot of the common issues that many people in marginalized and underserved communities face and their is no easy answer to this question because there are a lot of things. It is going to be different for each individual as we all deal with different issues. The short answer is, we all want to be accepted in society and I think is important that we listen to people in the neurodiverse community and try to learn in order to make things better. Most of us just want to be able to walk down the street and not be starred at or judged for our differences. One big policy that should be focused however on is police reform. Many neurodiverse people especially in the BIPOC community face worries of being stopped as well as situations where a mental health professional rather than an armed officer should be required. The recently passed Infrastructure Investment and Jobs Act signed by President Biden will do a lot for the ASD and Neurodiverse community. I see it as an opportunity to create jobs for many in this community while also making the world a safer place for us. There are many who live in communities that don't have access to internet which created a burden during the COVID shutdowns when school was remote when in fact school is already challenging for many in this community. I think the recent passing of this law will strongly address this issue in the long run and hopefully help create a better future. Themes Addressed: Acceptance, Community, Employment
Anonymous As far as I have been able to determine, there are no services for autistic adults, except possibly in the urban areas of Eastern Canada. If I am incorrect, then there's a gap in communication at the very least. A big concern for autistic adulthood is poverty. Autistic adults are likely to be unemployed, and therefore poor. Disability income supports are nearly impossible to access due to barriers to diagnosis, and actual amounts of financial assistance for disabled people are low enough that autistic adults are likely to be hungry or even homeless. Stigma from health professionals means that autistics do not receive quality basic health care. Injuries and illnesses are overlooked and untreated. This shortens our lifespans, as does the high rate of suicide. We commit suicide because our adult lives are intolerable - because we are often poor, hungry, homeless, unemployed, ill, and in pain. Themes Addressed: Employment, Health, Lifespan
Jacqueline Ward We need to address depression, anxiety, along with education, vocational training, employment. The gaps are in the educational system from the very beginning, early years. School districts are not equipped to handle a growing population of autistic and neuro-diverse students. We need more teacher training, better inclusion practices, more family input and support and solid programs to help an autistic no matter what age. Themes Addressed: Education, Employment, Health
Michael J. Borr, Chair, Advocates for Autism of Massachusetts AFAM endorses Obj. 1-3 of the Strategic Plan to support (i) integrated services for youth transitioning to adulthood and provide support throughout the lifespan, (ii) research and implementation of approaches to reduce disabling co-occurring physical and mental health conditions in adults to improve safety, reduce premature mortality, and enhance quality of life, and (iii) research, service activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people with ASD into society. Quality education services (PreK-12 SPED, postsecondary, career/technical education, and higher education) for students with ASD are the foundation for quality of life across the lifespan. Transition planning by age 14 is critical, enabling students to effectively access supports needed for adult life. Also critical is investment in educational research by the Dep’t of Education and others. Assistance with self-supporting small business initiatives can increase employment for some with ASD. Lifelong supports (residential and day supports, affordable housing programs and models, respite for family caregivers who play such significant roles, and transportation alternatives) must be sufficiently funded to ensure that every person with autism receives the individualized services they need when they need them. The crisis in workforce serving those with autism and others with disabilities must be solved for advances to be made. Themes Addressed: Education, Employment
Autism Science Foundation The IACC Strategic Plan on Lifespan Issues in ASD should include: • Improving Services for Females with ASD. Healthcare providers, educators and parents need more understanding about females with ASD to better communicate with parents and to serve the needs of ASD females throughout their lives. Current challenges include: (1) difficulty in diagnosing ASD in young girls (2) the need to understand the effect of comorbidities like anxiety on the recognition and treatment of ASD in females; (3) the need to address the societal stigma of female ASD as well as the effect of different racial and cultural influences; and (4) the need to communicate sensitively with females about the challenges and strengths of their ASD. • Recognizing the needs those with Profound Autism and ASD+ID. The lifelong needs of individuals with (1) profound autism-those with behavioral or comorbid health issues that require intensive care, and (2) individuals with ASD plus intellectual disability must be addressed separately from the needs of those with ASD who do not have those profiles. For these individuals, autism is not just a different way of seeing the world, and we need to ensure that every individual receives the appropriate type and level of intervention. Continued governmental support is needed on every level for educational programs, transition planning, appropriate housing, and meaningful vocational and community opportunities for this segment of the autism population. Themes Addressed: Acceptance, Health, High Support Needs
American Academy of Pediatrics The Academy believes it is imperative to address the lack of training of adult providers (medical, psychological, behavioral) to handle the transition from pediatric to adult care. Workforce issues must be addressed so there are more adult providers prepared to care for adults living with ASD. It will also be important to address ableism, so that people with ASD are not discriminated against in receiving care or experience social prejudice based on their perceived disabilities. The Academy recommends practical programs to guide health care clinicians in developing skills to support transition to adulthood starting at the age of 12, including the appropriate and quality transition to a qualified adult health care clinician. Reimbursement mechanisms must account for the extended time necessary to provide this medically necessary service. The Academy encourages the IACC to expand opportunities for training for pediatricians, family practice and internists to provide standard of care to individuals with autism spectrum disorder. To help prepare adolescents as they transition into adulthood, the Academy recommends providing more supportive guidance in high school for individuals with ASD who are interested in pursuing higher education and more support at the post-secondary level for students with ASD. In addition, the AAP believes that offering more vocational opportunities for individuals with ASD in companies and businesses that foster neurodiversity and increasing housing and residential support options for adults with ASD who require varying levels of support can help people with ASD as they progress into and through adulthood. The Academy would also like to note that elopement is a significant cause of morbidity and mortality for individuals with ASD. As such, more needs to be done to support families in understanding the risks and preventing elopement, including financial support for GPS tracking devices, education on keeping the home safe and secure, and education for police departments on ASD. Themes Addressed: Community, Education, Employment, Health, Lifespan
Daysi Jimenez Mas oportunidades de empleo Oportunidades de vivienda Mas entrenamiento de habilidades para independencia Ayuda para padres que tienen que seguir cuidando a sus hijos mayore de edad - respite care, recursos a oportunidades recreativas. Translation: More employment opportunities Housing opportunities More independence skills training Help for parents who have to continue caring for their older children - respite care, resources to recreational opportunities Themes Addressed: Community, Employment, High Support Needs, Housing

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