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Question 7 Responses

How Do We Continue to Build, Expand, and Enhance the Infrastructure System to Meet the Needs of the ASD Community?

Topics from Responses to Question 7

Acceptance: There is a need for increased acceptance and understanding of autism in the research community and in society.

Respondent Response
Kathleen Meyer Education of the MCOs about autism and understanding the challenges that autistic adults face. Understanding the weaknesses of executive function and how they may manifest differently in different people. Recognizing autistic features benefits others in the I/DD population in supporting their successes. Many crises could be averted by understanding autism more deeply and actually support success.
Margie Bruff, University of Colorado at Boulder Disseminate information about what it really means that autism is a spectrum. When I tell people I have autism they are shocked (partially because of my immense masking tendencies as a woman in society yay) that I am just living life like them with a job and ambitious life/career goals
Anonymous TBH I read this question like 30 times and am still struggling to understand what exactly it means. Are we talking about workplace discrimination? Awareness? It's very true that until my therapist suggested I might be autistic, I knew almost nothing about autism. I can't even say that I had a lot of misconceptions about it--I simply did not think about it. I may have believed it to be a fairly severe developmental disability, if forced to give some kind of definition. I never thought to apply that label to myself because I was, on paper at least, quite successful in school. I didn't learn a thing, but I got good grades and behaved myself. So maybe it would be beneficial for autism awareness to take on a bit of a rebrand--people should know it's much more common than we ever thought, especially in girls, and that the symptoms can present in a lot of different ways. I saw a helpful graphic once that expressed that people think the autism spectrum is a straight line from low-functioning to high functioning, but it's more like a graphic equalizer with lots of sliders/settings for verbality, stimming, eye contact, special interests, literal-mindedness, fearlessness, sensory overload, routines, solitariness, social cues, etc. And some of those settings are locked in, while others vary day to day, especially with stress: It's not the most scientific representation, but it's a great foundation.
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult To gain the greatest benefit it must be understood that improvements to infrastructure should be paired with a push for changes in culture. We cannot access if we are not accepted.
Raliat M. Bello Again, awareness on ASD.
Anonymous I dont like the idea of ASD surveillance. I understand the need for electronics to forestall elopement which would prevent tragedies like drowning. But the data off people with autism should have as much protection as any other persons data. I think there is a portion of the population that can benefit from apps for help with daily life and computer programs geared to make learning more engaging. Alot of kids on the spectrum enjoy using tech and that may make adoption of apps like bus assistants easier. But at the same time allowing an individual with autism to be tracked is a safety risk.
Michele, Parent, school employee Build relationships in community and workforce to accept and embrace quirky people. Find good fit career paths.
Anonymous ""ASD surveillance research"" sounds very uncomfortable and suspicious. Research should only be disseminated with extreme care, so that no further stigmatization of ASD occurs, but that people know how to accommodate us. Respect for ASD privacy is essential, including medical records. We are not ""dangerous"" and don't need to be monitored, if that's the implication. Infrastructure- minimizing face-to-face requirements in daily life. Email communication available as an alternative to phone calls. Definitely free/affordable products to reduce sensory overload. Accommodations such as noise dampeners on public transit vehicles would be good too, shades available on all windows for those with light sensitivity, etc.
Parent of Autistic Adult The word ""community"" in the phrase ""ASD Community"" should be viewed differently than current policies do. Current policies try to force-fit ASD individuals into a non-ASD world. Allow autistic adults and youth to migrate towards, learn from and interact with each other if that is their preference.
Heidi Parr, Case Manager, Seven Counties Services The word 'surveillance' is troubling. There needs to be public awareness/acceptance/education regarding autism, removing the stigma
Edythe Koerber , Mother Education of the public especially teachers. This is my soapbox. These kids are different but that doesn't make them less than.
Meg P Make sure people with ASD aren't abused or taken advantage of by people around them. Acknowledge that ableism exists.
Autistic Self Advocate and current PhD student in Disability Studies I think it is important to focus on how we can make education and employment setting more equitable for everyone so that autistic people as well as other disabled people are able to participate in the community along with their neurotypical peers. One way to do this is to focus more on spreading acceptance. Many people have misconceptions about autism and therefore focus more on the label and the ""negative"" characteristics instead if the whole person.
Anonymous Educate regarding how to live throughout ASD lifespan as they pass through the world in TV culture designed and built by and for NT’s. If ASD adverts on TV high profile secular such as lorrie love without the Lorry but instead Mathematica Principia, prism and opticks. Then it would make more space for ASD lifelong.
TP We would need a specialized program to meet the very specific needs of ASD folks ( which are much different needs than the rest of the population, and those needs are often misunderstood). If those needs are met we can become the super achivers, the super employers, and the corporate founders if we know specific tools are at our disposal, which upset and confuse many people in our attempts to meet our needs currently. They are not always more needs, but different, we just don't need the same things that others do. Any sort of education programs built to help Neurotypicals understand us ( double empathy problem) and reduce violence towards us would be super helpful and studies show this also faciliates success and massive growth in both parties.. This is cruical as well...
Jessica Hardy, Independent I do not feel like enough is effectively being done to provide accurate representation in the media and prevent any inaccurate portrayals of Autistic people in US society. For example, I feel like news reporters and screen writers know what they are doing when they announce that a school shooter or repeated offender is on the spectrum. The way they address the information makes it sound like the person did what they did because they are Autistic and that just seems unnecessary, manipulative, negligent and a bit lazy. Without violating their right to practice the 1st Amendment, there should still be a better way to make sure my rights, safety and quality of life are not being violated by being umbrellaed into a stereotype of violent offenders because I happen to have the same Commination Disorder as a violent offender. I just hope I worded that well.
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. There are now more than 5 million adult autists in the United States, yet the average person unaffected by autism cannot fathom how living with autism, or supporting someone with autism, becomes the organizing principle of all activities throughout the lifespan. This ignorance permeates every service and delivery sector as well as every age and stage of every autist and those who support them throughout the lifespan. We know a lot about autism. We must end ignorance and the suffering it causes now. We must also develop a dual-diagnosis system in every state that prevents autists from either being served on the developmental disability side or the mental health side when recent statistics quoted in Spectrum indicate that approximately 75% of autists are living with a mental health comorbidity.
Lisa Jeanne Graf, activist All parents should receive information about how to connect with the autistic community and not just parent groups. Also please use person first language and remove any puzzle pieces images.

Collaboration: Increase collaboration and coordination between agencies and organizations.

Respondent Response
Anonymous research should involve public/private partnership, each has something to provide to the cause
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation Partnering with agencies delivering services and PAGs representing stakeholders such as ours is a priority for research.
Anonymous Clearer and less confusing systems, easy one-stop-shop for all services
Parent Public and private partnerships would be good. Training for students as well as employers is important. Everyone is different and it is importsnt to learn how to work and interact with various kinds if people.
Michele Lopez, The Guidance center-Early Head Start The two worlds, health/mental health and education MUST play well together to support the child with Autism!
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism Similar to the Down Syndrome registry, and ASD registry needs to be established to collect genetic samples, health and mental health records, and any other information that can be used to guide research. Researchers could then access the information across institutions in the US and internationally to guide research and also make findings available to registry participants and other providers. The registry could also be used as source for research study recruitment.
Jessica Easton A way too enhance the infrastructure is for there to be good communication between government and private sector groups to know what is working and what is not. Sharing ideas across the board
Lisa Schott, parent and caregiver We can start by strengthening public and private partnerships for sure in the infrastructure areas of workforce development, affordable,safe housing and sharing of research best practices rather than focusing on causes or cures- focus on best quality of life. How would you feel if you were told you had to wait 15 years before you could move into your dream home? Or you can't work as much as you want because your supplemental security would be in jeopardy? Thank goodness for Able accounts but the way we treat people with IDD/Autism and their families is just ridiculous. Our lives are filled with enough trauma but to have to then also find our own way on the underground railroad of IDD/Autism with poor and expensive services, underemployment and long wait lists is insult to injury.
Trisha Gallagher, Public Special School Principal Collaboration of all stakeholders - we don't need providers fighting for monies. Ensuring that families understand the research. Ensuring that research is replicable in the school environment.
Anonymous Strengthen research collaboration
Carol Tatom, Autism Response Team Having access to ABA services it the biggest concern for families right now. Public and private partnerships are also important because they bring many strengths together. I would like to see more autism specific resource fairs that families and came to and explore all of the resources in their community. This should be done at least twice a year (spring and fall) so that information can be relevant to current needs. For example, spring would be the perfect time for special needs families to get information on summer programs or summer camps that are available for children with autism. Fall could be focused on education and back to school resources. This would also provide an opportunity for researchers to present current information to families about their work. Strengthening the community using a resource fair platform helps unite the community together for a common cause.
Anonymous Employment opportunities and public/private partnerships would be very helpful.
Parent Focus on strengthening research collaborations and public/private partnerships.
Katie Vahey Gaebler, Parent and ASD consultant School district wide and technology partnerships are critical.
Anonymous I can only speak to the ECE ASD population. As I’ve stated previously… I feel integrating the current EI system with identifying/serving the ECE ASD population should be integrated. You would need to add additional behavioral supports and services to current EI services, but the system already in place for identifying kiddos 0-3 with developmental disabilities already works!
Alexis Oliver Williams Public and private partnerships and educational research.
Beth Mortl I think communication between DHS and families needs to improve. We are forced to receive and use services that are paid for by DHS, but only through contracted agencies. These agencies are all different. The workers are subjective. Not everyone understands autism and their needs. Many families are denied services by a Coordinator because that person doesn't think they need the service. DHS needs to be closer to the client and protect civil rights of the disabled.
Anonymous The Autistic Self-Advocacy Network.
Damaris Ramos, Ron Davis Autism Foundation, Inc. Providing programs for neurodiverse individuals and education for neurotypicals with help with acceptance in schools and the workplace. Partnerships and collaborations with organizations that focus on helping autistic individuals live the life they choose are very necessary.
Philip Kahn-Pauli, RespectAbility As a national disability inclusion organization, RespectAbility fights stigmas and advances opportunities so all people with disabilities can fully participate in every aspect of community. Our work is particularly focused on employment solutions and as such our comments on your strategic plan are focused on employment related issues captured under Question 6 and Question 7. Full Comments here: Many of our ideas are focused on actions that can be taken by the federal government and its constituent agencies. We do this because we believe that purposeful action in the federal space to act as a model for private sector adoption of neurodiversity best practices. We thank you for this opportunity and we look forward to working with you in the years ahead. 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

Funding: Increase funding and resources for autism research and services.

Respondent Response
Lisa Wiederlight We need soneone who works on autism full-time in the Federal government This person should have a public policy background, and should work collaboratively with the IACC to create policy-focused research, and research-supported policies in our country. We need a policy position with appropriate stafing in the White House Office of Domestic Policy to ensure that a National Autism Spectrum Disorder Strategy is created, implemented, and evaluated. This woudl include all of what you have above. We have had this for HIV/AIDS with great success, and somethign liek ti for Alzheimer's. Why not autism, when our community is growing larger, our caregivers are unupported, and so much potential is wasted? People with autism need different supports, and they deserve to live safe, happy, and productive lives. This is the only way I know to combine policy with research. I would be glad to discuss this further.
alvaro ryes, angels castle More grants
Guohua Li, Columbia University CMS mandates or recommends that states offer children with ASD once diagnosed to enroll in the Medicaid or CHIP.
T. A. Meridian McDonald, Vanderbilt University Medical Center INCLUDE AUTISM AS A DESIGNATED GROUP FOR HEALTH AND HEALTHCARE DISPARITIES RESEARCH Fund basic, neurodiversity-based research through the National Science Foundation- we need to understand development that is ""normal for multiple pathways of autism(s)."" Invest more money into creating affordable housing with accessible transportation. Fund research into autistic strengths and increased understanding of the developmental pathways of autism strengths across autism(s). Incentivize hiring of employers of autistic people. Fix the SSI incremental decrease of financial support when combined with work- this is disincentivizing. Disabled people should continue to receive full SSI when working until they earn above the poverty line from their jobs. There is NO reason to work if working does not improve poverty. Fund advertising to decrease the stigma of autism. Highlight the combined strengths and challenges faced by autistic people. Emphasize the social value and intrinsic worth of autistic people.
Anonymous All states need to be encouraged to establish Medicaid waivers that include autistic people with significant support needs.
Freda Dias Medicaid expansion. No more wait lists!!!
Anonymous - Provide subsidies to autistic-run organizations instead of Autism Speaks, Next for Autism, or other neurotypical-run and/or ABA-based organizations - Offer incentives to companies willing to grant acccomodations to disabled employees, including ""unusual"" or ""trivial"" accomodations that are important for our sensory processing or stress management - See prior comments on improving anti-discrimination legislation - Create educational resources aimed at neurotypicals (parents, teachers, doctors, etc.) with writing or consultation from autistic adults/advocates
Eileen Nicole Simon, Public funding must be provided for housing, meals, clothing, ongoing education, supported employment, and recreation. Negative, wishy-washy and nasty attitudes about ""bad"" parents and ""institutionalization"" must be openly discussed and changed. No one shames and blames parents of children with cancer. Equal efforts for charitable contributions for lifespan care of autistic people must be looked for.
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) Funding for the the two critical junctures by providing government-funded medical health care to those Autistic individuals for physical rehabilitation and government-funded education (or other similar socially-assimilative communities as those in high school and college) for adults to integrate and assimilate the behaviors of the common population are the two pillars upon which those with Autism will be able to succeed. As an Autistic person myself, and having regularly hung out with and talked to my Autistic peers, I have deduced that they all have some significant physical impairment which inhibits their ability to be as active and engaging as the neurotypical population and having been ostracized by their peers, lack the knowledge of what is socially appropriate behavior and conduct, even conduct that does not lead to a police interaction but behavior that continues to repel them from making closer relationships with others (work acquaintances, family friends, school friends, et cetera)
Amy Morosini Funding. Invest in programs and make them affordable for everyone.
Nicole Shelton, AdvocacySD Fund it
Anonymous SSI type funds
Anthony J Thompson Much more funding at the state level
Anonymous FUNDING! THere needs to be more funding for schools and people with disabilities. Alongside this there needs to be more research and data collected around infrastructures needs related to ASD.
Anonymous Maintain programs with normal procedures. Stop making arbitrary changes. Cease expecting families to develop an accounting and bookkeeping level of financial acumen about insane detail to manage their adult child's programs. Abandon capricious changes to programs and staffing with no communication to families. The expectations on families with disabled children is unrealistic. The shaming by staff of families with disabled children is inappropriate. Stop providing funds to service providers that should go to families. The percentages paid to providers contracted by the states undermines the real supports families need. To maximize the quality of life for people on the Autism Spectrum, train people who work in Human Services and encourage them to remain in their positions instead of leaving at the first opportunity for the higher paying or easier opportunity. Wasted funds abound on the state level on employees who know how to service only portions of the disabled population. Typically these groups do not include anyone with a diagnosis of ASD.
Anonymous Give the staff more money so there is a more reliable workforce to implement everything. If they're not given enough and all we have is people who can't get a better job, all the research in the world won't matter.
Cheryl There is No daycare that will take a severely autistic child which leaves a single parent to quit their job and the Government offers NO help until the child turns 18 and you have to pull the child out of school to get that help. Child Support is only based on a normal child. They do not make exceptions for a disabled child, which leaves the custodial parent drowning. If the custodial parent loses their job to care for the child, the court will give the tax credit to the non custodial parent which just reimburses that parent for their child support and leaves the custodial parent and child drowning with NO help. Right now you are doing nothing so Do something to help. My journey with having a severely disabled child, has made me very disappointed in our Government. We basically turn our backs on the disabled community. Our Government offers very little help and forces them into poverty or institutions. SSI hasn’t been updated in 30 years. In Illinois they haven’t taken a child off of the waiting list for services in over 12 years. Once a child turns 18 they have another 5 years they can hold out before they have to offer services to a disabled individual. The most a severely disabled person can receive from SSI is $794/month and you can only have $2,000 to your name to even receive that. That doesn’t pay rent anywhere. You also can forget about paying for medication, clothes, electricity and this list goes on. Now you are forced to go into a institution.
Peggy Hamby, Speech Language Pathologist Don’t ask the schools to be the sole resource. There isn’t enough time and money to accomplish all that is being asked. If you want the schools to meet this need, then fund them and fund the programs to be able to accomplish it. Please research the role of our exposure to petroleum products in plastics to determine its role in the genetic basis of this exponential rise in autism. We are on the third to fourth generation of large exposure to plastic, which correlates to the rise in autism.
Cynthia M. Parkhill Current infrastructure fails to meet the needs of older autistic adults, people born before adoption of modern diagnostic criteria. The infrastructure system needs to be revised to serve the “invisible generation,” and as diagnosis is currently the only way to access available services, enhancement needs to start with diagnosis free-of-charge to any adult who wishes it.
Becky Rosenberg, Partners in Policymaking (Maryland) Funding sources to support advances and research
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force The American Rescue Plan provided a temporary 10 percent increase for Medicaid home and community based services and supports (HCBS) Build Back Better Act proposes investing $150 billion (originally $400 billion) for HCBS. If passed by Congress, this will be a start to build the infrastructure of services and supports for individuals on the spectrum. However, given the decades of neglect, continued investments must be made. There must be a continuum of residential services available to all those on the spectrum
Jackie Allen Have flexible services for those with severe ASD. Medicaid waivers need to be accessible and flexible to meet the needs of families.

Inclusion: Include input from the autism community in autism research and services and ensure that research and services are inclusive of genders, racial and ethnic minority groups, and other underserved communities. Include more autistic researchers and use community-based participatory research models more often.

Respondent Response
Anonymous To fix policy gaps there needs to be more Autistic representation in research, policy making, workforce recruitment, etc. Ending Panoptocism and creating real accountability by having Autistics record and report abuse from a young age.
Jennifer Degner, Early childhood special education teacher Overhaul and take action now !! Ask the families, ask the individuals, ask the teachers, ask providers, ask support staff. Ask and ask again in 3,6,9 month, year intervals as needs change. Survey often and with specific topic focuses. Trained animals, clothing options, please encompass all areas of life. Please have library systems incorporate lesson pix, boardmaker or other Picture exchange communication subscriptions to there maker space lab areas for families and incorporate more visuals for individuals using library services. Provide more AAC devices for library check out.
Orla Putnam, University of North Carolina at Chapel Hill As a researcher, strengthening research collaborations with the autism community is something I would like to see get more funding and priority. I want to continue to work with stakeholders to have them lead the way in terms of what we research, but finding partners and finding funding to pay collaborators is difficult.
AutisticallyReal, Actually Autistic Advocate Ensure that the research includes and prioritizes Autistic Voices. Seek them out. Invite them to the table. Ensure the 'research' is ethical (not seeking a 'cure').
Anonymous Get autistic people involved! This does not need to be a big mystery if you have every initiative led by autistic people. There are so many autistic advocates who give talks at schools, universities, colleges and workplaces. Hire them and let them do the educating. Get them in touch with the relevant institutions to advice on how to adapt infrastructure in a way that suits all of us - autistic or not.
Anonymous Searching 'Sources for Autistic people' should bring up my state website that encourages safe and Autistic supported resources and link to local hospitals/practices/communities trained to properly support Autistic individuals of any age. There needs to be a local 'one stop shop' for such information. This page should also include free-accessed research supported by the Autistic community locally, nationally and internationally. Their rights under the ADA should be emphasized and which companies are Autistic friendly to work for, schools that are friendly as well and with all staff trained to address, recognize and respect Autistic people. Research conducted by non Autistic people about Autistic people MUST be freely accessible since some Autistic individuals do not have the funds. Researchers should diligently respond to the Autistic community if their research is unable to be seen or if their study is extremely harmful.
Anonymous We need to ensure Autistic academics are the leaders of autism research and that ethics committees have Autistic representation.
Anonymous Collaborate with autistic adults. They can answer most of your questions. Never make policy decisions without autistic voices represented.
Anna Just listen to us and let us take the lead in our human right to self determination. Hire us to be consultants on making spaces more accessible, on research, everything. One survey or another to check in is not enough, check in with US. That means building trust, because we deserve to be supported in our endeavors to be okay in whatever that means for us. I like what Portland is doing with the AASPIRE healthcare toolkit and Dr Nicholaidis's work, that model should be standard national practice everywhere.
Cyndi Stephenson I don't know what's out there. We have not being asked as far as I can tell. I would ask that anything done needs to be LED by autistic people. These organizations that claim to help autistic people rarely ask autistic people what we need, it's all about helping parents or getting donations for research meant to weed us out genetically. Get a panel of autistic adults and ask what they think is needed. It will be very different from what neurotypical people think we need.
Anonymous Continue to increase seeking feedback from people with autism and their families and advocates. We ultimately need government to listen better and more frequently and actually use that feedback for actionable change.
Michael In my opinion the most important research priorities, policy issues and gaps are: research and data infrastructure needs, workforce development, dissemination of research information, and strengthening research collaborations and public/private partnerships. Also, i believe there should be some method of getting feedback from the ASD community itself, so that the community itself can inform the process and relay what they actually want and need.
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. The autism community needs people willing to listen. That’s the first step, always. Our communities would set aside sensory friendly times to be out and about, or have rooms in consideration of our support needs too. Simple things like earplugs, lower music and lighting and no additional scents/fragrances. As a society, we need to acknowledge and accept the natural state of autistic individuals. Recognizing the sunflower lanyard as a “hidden disabilities” emblem when someone walks into your place of business, or even just in a public space, then know how to respond. We need more accurate representation in the media. We need funds allocated to our well-being, not raising awareness for what we already know we’re experiencing. Research should be done in full transparency, with the support of the autistic community, and with their voices being the only ones amplified. It should never include words like “cure,” “prevent,” “eradicate,” or openly state support of eugenics. Research should be rooted in creating a better understanding of all of our experiences and needs. Anything outside of that will most likely be seen as nefarious. Our DNA/results should also be protected at all costs. Trust is a major factor in autistic relationships, to earn it, you have to prove that you deserve it. Paying us for our participation isn’t a bad way to support our community either. We often give from empty tanks ourselves, show respect by compensating our energy.
Katlyn First: have more autistic people directly involved in these processes especially in “research”. Listen to autism advocates when we say that something is wrong or hurtful towards the community; especially when it comes to research. So much autism “research” is eugenics focused, and research for medication is just inhumane. To truly meet the needs of autistic people in the education system, the whole education system needs to be redone. It is so incredibly ableist and does not allow for sensory breaks, it forces people to try and fit an unachievable standard. Services for autistic people should be COMFORT focused; not conformity focused.
Mollie Neurodiversity framework and training throughout infrastructure.
Elizabeth Bartmess Gathering feedback from adults with ASD. Ensuring that research and policy development teams include adults with ASD, and that research and policy actively gathers feedback from from people with ASD.
Tosha No ASD surveillance research. I think improvement could be made in the accessibility of public transit that would greatly benefit autistics in their commute to work. Largely in terms of research, it all needs to be geared in favor of autistic people, by autistic people. Then the data we collect should be used to help the broader autism community and utilized by us, for us. Then we could have our own private research partners who actually help to advance our wellbeing for real. And have real-time dedicated research that works alongside us instead of working against us by continuously seeking out biological untruths to either change or eliminate us entirely.
Teresa Olafson Involve ASD individuals for ongoing feedback while minimizing those disciplines that tend to monetarily benefit from the interventions they tailor for the ASD community. A primary focus needs to begin in the public school system where all individuals begin to learn or practice social norms.
Andrea Grover We need policies that support, incentivize, and/or require participation of autistic people in the planning of all research on autism and autistic people. Autistic participation needs to be more than token representation.
Shannon Borg, autistic parent to autistic children The best way to build and expand the infrastructure is to hire autistic adults to help with building and planning and research. We are the ones who can come up with the ideas to make things work for us. Stop trying to do things for us that we don't need. Have us there for all aspects from the brainstorming to the planning, to the layout, building everything. Work with us not for us.
Aerienne Amadis-Noel Fey, Autistic (ASD 2) Include autistic researchers, autistic and ND scientists and actual autistic people.
Ren Koloni Research on autism must involve autistic people. Community-based participant research is an excellent model to use. Research on autism must be accessible to autistic people. We deserve to know what people are saying about us, not just because it is *about us* but because we need to be able to speak up - and be heard - if we find out the research is wrong. Autistic researchers must be supported and prioritized over allistic researchers. We know what we are talking about.
carol staszewski Do the neuro-dominant supremacy awareness work that doesn't seem to be happening anywhere! Autism services are dominated and driven by predominantly white middle/upper class parents/families (largely due to funding maybe?) who have little consciousness of their ablelist and neuro-dominant privilege and prejudice.
Sarah Zate, TTUHSC El Paso Closer monitoring of research and interventions to assure the involvement of autistic people in planning and development
Sandra Lee, Autistic adult Simple answer: listen more to autistic people, not just to parents of autistic children and neurotypical ""experts"".
Anonymous Involve Autistic adults from the affected community in the design of and ethics review boards for all autism research. Many research studies on autism are deeply unethical, but ethics review boards may not realize it because they are not Autistic. Support and accommodate Autistic autism researchers. Make room in academia for a different pace of work. Approach research on autism from the perspective of a holistic model of disability, rather than a medical model.
Anonymous Include Autistic people in the implementation of all of these things, most importantly research. If you don't actually include Autistic people in the process of making change for us, then you are missing out on having the actual voices you are making change for giving feedback and help.
Nicholas Elizabeth Faby Make more efforts to include autistic people (including autistic scientists) when making policies and designing and conducting research.
Corrie Whitmer All critical research on ASD should be made available in plain language. Calls for research subjects should explicitly include self-diagnosed autistics (as nonwhite and non-AMAB individuals are likely to be underrepresented in formally diagnosed research cohorts). Researchers should prioritize collaboration with groups that have autistic leadership, especially those that foreground BIPOC, intellectually disabled, and nonspeaking autistics.
Anna R Myers Continue talking to autistic people and asking what they need and what they want and what will best help them. Definitely more school and workforce development though.
Anonymous Research collaborations with autistic individuals.
Anonymous Autistic people need to be the drivers of what research is done about us and using us as subjects. The highest priority should be in how to include autistic people meaningfully in prioritizing and designing research.
Lisa Morgan, Lisa Morgan Consulting LLC Listen to the people of the autism community.
Anonymous There is a critical need for continued data collection to understand the needs and landscape of services for adolescents, young adults, and adults with ASD who have complex needs. For example, it will be critical to understand what life and services look like for individuals who may not communicate vocally or through writing, who have intensive behavioral and psychiatric needs, and who live in settings other than with family members. By understanding the societal impact and gaps in services, target areas for public policy and practice can be based on data.
Alicia Munson, The Arc Minnesota The IACC vision statement reads ”The IACC Strategic plan for ASD will accelerate and inspire research, and enhance service provision and access that will profoundly improve the health and quality of life for every Autistic person on the autism spectrum across the lifespan”. The statement does not answer the question “according to whom?” Autistic people must be at the center of this conversation. IACC has made great progress in including Autistic people in its processes, and must continue working to center their lived experience in everything. To truly and meaningfully engage, Autistic people may need support with executive functioning and administrative tasks, such as scheduling meetings, time keeping, or completing paperwork. This is in addition to access infrastructure such as ASL, captions, transcription, spell to communicate, and other preferred, individualized augmentative, assistive methods that should be built into these processes. Furthermore, sensory access and accommodations must be prioritized. With Autistic leadership, we should examine: obstacles to financial and economic security. barriers to affordable, accessible, inclusive housing. causes of shortened life span and increased comorbidities. barriers to individualized, self-directed, culturally-respectful services. Relationship-based support and services such as SCERTS (, and principles of collaborative problem-solving (Ross Greene and Beyond Behaviors) should also be focus areas.
Dr. Andy Shih, Autism Speaks Knowledge disparity is at the heart of all health disparities. Like other U.S. public health programs and resources, the current infrastructure and surveillance system for autism is burdened and complicated by systemic racism and institutional biases. As result, we know less about the unmet needs of some of the most vulnerable members of our community and next to nothing about how best to help. More intentional investment is needed to enhance data collection from underrepresented populations (e.g., racial minorities, rural populations, low SES families). Fragmented or difficult-to-access data systems is another major barrier to improved monitoring and surveillance. Significant investment in data-linkages, especially at the state level with more local granularity, will help address challenges related to this issue by bridging some data gaps.
Kim Musheno, Autism Society of America There must be a continuum of residential services available to all those on the spectrum. (see #6) We would recommend that additional attention be given to surveillance of underserved populations, including racial and ethnic minorities, economically disadvantaged communities, and rural populations. Black children are more likely to be late identified, misidentified and not identified in these critical early years. In the absence of an ASD categorical identity for school proposes or diagnosis for therapies, these children are denied access to autism-specific treatments and evidence-based programs. We need surveillance of early death and mortality for those with ASD from unintentional injury. Death certificates do not show disability status and incident reports vary widely between agencies. We know from studies elopements open the door to death by drowning and they are not identified as such. If we are to show progress on improvements on law enforcement training and improved autism searches and success on family awareness and action on elopement prevention, an accurate understanding of ASD mortality is necessary. The Autism Society suggests that surveillance for suicide deaths and suicide attempts that require hospitalization be increased and reported on regularly.
Gene Bensinger, Parent and Guardian We must do it equitably. The needs are so incredibly varied and the IACC must be on guard to avoid elevating or subordinating individuals and subtype groups in any infrastructure development efforts. The best approach is to invest heavily in empirical data collection and arms length analysis. Given what little is known re the current state of generally poor outcomes (across broad domains) for autistic individuals and their families, it's pretty clear that the near exclusive values, versus data, driven policy of the past has failed too many. When presented with options, well educated consumers generally make good choices.
Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services Autistic Advocates must have a central and vital position when developing programs and supports, as lived experience is a vital part of evidenced based services. Exploration and funding of strengths based, play based, and relationship based services are important, and defunding behaviorally based services, as evidence shows these are ineffective and also harmful. More options for childcare that are not ABA or behaviorally based, with training in Ross Greene's CPS model, for example, will be vital to success of Autistic families. Childcare options that use strengths based and relationship based models will also greatly meet the needs of the Autistic community, and is a service that many Autistic families seek out (but can only find ABA or behaviorally based services, which they do not want).
Skylar Talk to autistic people and autistic-led organizations. Literally no one else will have the correct answers. Stop trying to find a cure. Start helping the autistic people currently living in this world
Anonymous Work with autistic adults and children to figure this out.
Rappahannock Area Autism Council Address the needs of communities with a variable population. Some of those variations include the need for quality internet services in all geographic locations, affordable and efficient transportation and increasing the type of individuals who can diagnose to better address the endless wait list of children needing ASD services.
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, including through infrastructur, should come from this perspective, rather than one that medicalizes autism and regards it as something to be ""fixed.""

Research: Improve research design to achieve higher statistical power and increase transparency surrounding data use, study recruitment, and dissemination of findings.

Respondent Response
Yvonne Federowicz Surveillance research needs an actual, truly well-designed, random study, finding out where autistic adults are in society, and what the needs are. This does not mean where diagnosed autistic adults are. This means getting a truly random sample of human beings, or as close as is possible, and then admitting to the limits of the study. In other words, please fix your science. If a chunk of researchers in your own lab are autistic but are good maskers but could never even think such a thing because of the ""othering"" of autistics in your own lab, please deal with it. This is your obligation.
Anonymous Studies including community-based participatory research and self-advocates should be more of a focus so that there can be stronger and more effective dissemination of research information and increased community partnerships. Services based research should be a high priority so that research is being tested directly in the environments which deployment would occur.
Angela W. Let the parents know they may be apart of the research project so you can get a full report. I found out after the fact. My son is now 25 Not cool
Josh Compton Public communication is critical to build informed, supportive communities. Communication scholars (especially in health and science communication) would be great resources for such efforts.
Dani Sellmer We need more research and more transparency when it comes to the research. We need to be able to tell families what works and what doesn't. We also need to be able to give families access to the research and therefore the treatments. It is too hard for families to determine what really works as a treatment. Families also need access to treatment. Research is no good if no one can access the treatments.
Anonymous Comprehensive database of all known genetic mutations, screening, diagnostics, treatments and clinical trials including but not limited to complimentary medicine.
Anonymous dissemination of research information to clinical providers and families

Standardization: Ensure that standards of care and services are consistent across state lines.

Respondent Response
Marie Cullom Standardized assessments and genetic testing for all individuals on the Spectrum regardless of functional state.
Cindy Gutschke National standards of treatment.
Maryse Hile, Parent of adult child with ASD who receives services The overarching policy issue to my mind is one that exposes a glaring gap: the lack of national uniformity in expectation and approach with respect to the availability and eligibility criteria of services for ASD adults. It's simply scandalous that parents who need to move, for example, from one state to another in retirement to be closer to other adult children for reasons of current or future support, cannot do so simply because the target state has overly restrictive eligibility criteria or requires a multi-year wait. This lack of portability might cause a family to remain in its current, subpar service environment rather than risk an adult child having to sit at home with nothing to do for years. Or, they are unable to move closer to the extended family who need to become involved as they age. When families are stymied in this way, it places outward pressure throughout the system: when they are unable to avail themselves of built-in family support elsewhere, they draw more heavily on their current environment. And given how limited the pool of workers of various kinds is in all states, this creates a rolling crisis of staffing for all types of services. The expectations of eligibility threshold, types of services, hours per week for services, the wait-time for obtaining those services and the wait-time for entering supportive housing should be established at the federal level.
Bek Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS and other direct support professionals are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest.
Rachel Zanoni Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS and other direct support professionals are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest.
Sandra McClennen Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS and other direct support professionals are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest.
Nina Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS and other direct support professionals are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest.
CommunicationFIRST Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards/processes to ensure that all adults who require robust, language-based AAC—especially those who now lack it—are afforded timely access to robust, language-based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training, and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS-funded and other direct support professionals who are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest.
Tiffany Glass In order to avoid leaving behind the most vulnerable members of our community, it is important to integrate considerations for supports needed to include autistic individuals who require AAC to communicate. We support CommunicationFirst's position on this: ""Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence""
Sarah Require funding sources (health insurance, state health services, public school districts, etc.) to support a broad range of evidence-based supports and interventions *equally*. Not favoring one approach over the others because of lobbying efforts and/or business interests.

Workforce: Increase efforts to develop a strong workforce to provide needed research and services for the autism community. Increase research on accommodations to increase workforce participation for autistic people.

Respondent Response
oldladywithautism, autistic elder workforce development and support is imperative.
Rebeka Edge, Behavior Matters Workforce development,
Lisbeth Little Workforce development and college and technical school programs for adults with autism are absolutely critical. Aging out at 21 is a steep cliff where parents are left scrambling and lost. There are very few programs for adults with ASD. Public and private partnerships are critical. But often these become tangled in bureaucracy and at the end of the day families need help now.
Sherrill DeGenova The asd community depends on the medical community, supports community, law enforcement community, business and employment community, housing and transportation community, and the related services community to be varied and accessible to them. Public policies rarely support and protect the disabled. $$ go elsewhere. To hell with research and committees - really, what is needed is boots-on-the-ground committed individuals from all communities to assist the asd population.
Lauren Vogler The rate of turnover in adult day program aides and group home staffing is extremely high. People with Autism need to have consistency built into their lives, and the constant staff shuffling causes problems. If the salaries of direct support staff were increased, and career paths for direct support staff established, this would greatly increase the number of people who remain in the field and therefore help people with Autism who need their help.
A.K. Reimburse providers appropriately for their time and services when they specialize in this area so hospital and clinic administrators will stop focusing on the ""bottom line"" and will listen to providers when they ask repeatedly for more support to meet the demands of the community.
Jennifer Dapkins Workforce development
Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability All programs and services come down to staffing. Numbers and quality. We know the human services sector experiences chronic staff shortages, now made worse by the pandemic. The whole system of services and programs needs an infusion of professionals to develop and monitor programming and provide meaningful supervision to line staff. Line staff need ongoing meaningful education and training. Life staff need ongoing support. They need to know there is a meaningful crisis intervention back up system in place to support them. And they obviously need living wages, benefits and retirement plans. The work can be challenging but it is also deeply meaningful and important.
Tom Rickels, X-Excel (day services provider) Workforce Development. There is already a crisis of direct care staff and large number of people with autism may not be able to remain at home.
Lisa Research around employment and workforce development are the most important.
margaret bennett The caregivers must be paid more money which will attract and encourage individuals to be caregivers who have a vested interest in providing a better quality of life to adults with disabilities.
Lisa Nieman, Parent Pay educators more - both teachers and para professionals. Reduce the need for institutionalization and for separate classrooms. Encourage people to go into the mental health field by providing modern training and tools that work rather than outdated methods that traumatize people.
Anonymous Pay medical providers for their work. Autism is a complex, multifactorial condition that doesn't get reimbursed as such. It would be a lot easier for providers to take proper care of patients with this condition if we were fairly compensated for it.
Nancy Kearney, Parent adult autistic man in Massachusetts ADS surveillance research, the need for better paid workforce in the Autistic, developmentally disabled areas!!!! Very important. The foundation for these individuals Increase number of adult programs, centers, residential housing thru private/public joint ventures
Frank Easton To quote you ""research workforce development"", get us jobs that match our obsessions and watch the world become a better place.
Star Ford, Divergent Labs Research involving inclusion in the workforce and other types of inclusion should be autistic-led or in partnership with autistic people on an equal footing, since past research and results have been skewed towards the needs of employers and service providers.
mother, guardian, and advocate The doctors are so far behind the research it's horrible.
April Morome, Autistic person DARS Voc Rehab forced me to take not one but two IQ tests and tests for bipolar because they didn't believe me when I said I have ASD and they aaid, ""No. You don't seem to have autism. You seem to abrasive and as though you are refusing to comply. You might have an emotional condition, instead."" Both times, those tests came back as that I have ASD and that my IQ is above average when not interrupted during those tests. They then begrudgingly said okay to those reaults and tried to help me find employment. I think that they need to be educated... every single worker of DARS, including Tiffany Richardson of DARS, needs to be educated about ASD and about that our literalness is literalness, not rudeness, and that by law, they are supposed to not judge us like my worker did and to comply by helping us.
Anonymous Workforce development and dissemination of research
Jennifer Reppond, parent of ASD teenager / doctoral student Training, training and more training. This training needs to start at the college level. When teachers are learning their craft, there needs to be more than just an overview of the disorder. Community training; employer training; peer training; public and private collaborations; Universities need to up their disability game - because disability services on college campuses are no where near ready for these types of disabilities. The support network needs to come from all areas of the community.
karen barrett, barrett consulting incorporate compassion training into all curriculum
Anonymous Requiring education for all those researching ASD that centers the experiences and dignity of people on the spectrum and treats us as valuable members of our society

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
Kristen Herrett We could start by diverting some of the overwhelming funding going into “prevention” into these programs. The prevention and causation research does absolutely nothing for the population already here.
Catherine Martell, autistic, health care provider all
Anonymous Very difficult to prioritize. So much is lacking so much is needed!!!
Zahida Chebchoub research and data infrastructure needs
Vanessa parrott I don’t know… Any increase would be beneficial
Sharon Montgomery, U.S. citizen All of the above.
Florencia Ardon This depends on the type of research we're talking about.
Colleen Allen, Autism Alliance of Michigan Finally, data collection is critical. We still do not have a reliable, effective, standard way to collect data on our population. We do not have an accurate number or estimate of the number of people with autism in the state. How can we measure progress without baseline measures of persons affected, the services they receive, and ultimately, the outcomes we are expecting?
Deepti This needs brainstorming Infrastruture Govtaid Organisation commitment
National Council on Severe Autism, National Council on Severe Autism Despite overwhelming evidence for a dramatic increase in autism across the US, this data is seldom analyzed for the pragmatic purpose to estimate future needs and costs to both families and society at large. Research is needed on the following: • Birth year prevalence of autism over the past 30-40 years, in regions where such data is available (eg, California) • Same, but broken down by rough level of functionality (eg, ID, no ID, or having severe or challenging behaviors) • The CDC data is helpful but insuffient. A comprehensive review of birth-year-based autism data, beginning with birth year 1980, from all state and federal sources is desperately needed.
Sonja Miller, Parent Enhance all of the above
Michael J. Borr, Chair, Advocates for Autism of Massachusetts AFAM is supportive of Obj. 1-4 of the 2016/17 Strategic Plan (i) promoting growth, integration, and coordination of biorepository infrastructure, (ii) developing, enhancing, and linking data repositories, (iii) expanding and enhancing research and services workforce, and accelerating the pipeline from research to practice, and (iv) strengthening ASD surveillance systems to further understanding of the population of individuals with ASD, while allowing comparisons and linkages across systems as much as possible. Collection and analysis of prevalence and demographic data, including better population level data on qualitative characteristics of people with ASD and their families, as well as birth year, is necessary to facilitate improved design and implementation of policies and services. Information critical to improving access and availability of supports and services is often siloed in various federal, state and community agencies and providers, and hampers research into and measurement of outcomes and identification of gaps in service. This makes it difficult to determine which populations are underserved and why. Better data is needed about quality of life for those with ASD, including housing funding and living situations. Meaningful outcome measures need to be developed so that efficacy of supports and services for people with various profiles can be assessed.

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

Respondent Response
Danielle Witt I feel like research is less important than finding programs and supports for these individuals that actually help. Maybe some pilot programs for vocational training or independent living assistance. As a parent seeing all these research questions is disappointing I feel let down by the government.
GS, Autistic Person As an autistic person, this question terrifies me. Creating a surveillance infrastructure of linked biorepositories and data repositories so that researchers can continue their ongoing search for the Autism Genes(tm) that are their Holy Grail -- perhaps by employing machine learning to massive data sets? -- is basically signaling to me and other autistic people that our days are numbered. I am not surprised that scientists want to rid the world of autistic people, although I do wonder what they will do once the human beings upon whose backs they've built their careers are eliminated from the gene pool. Pathologize some other way of being, most likely. I would say ""don't do this"" but the research community has a long and storied history of not listening to autistic people, and I don't expect them to start now. Instead, I will say, think about why autistic people don't trust autism researchers and think consider how researchers can work to build a relationship of trust and respect with the people they have harmed.

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
Ashley Blanchard, Columbia University Medical Center ASD mortality research is limited and there are existing large national data systems that provide important sources of detailed information. Better understanding of mortality among people with ASD will help inform primary and secondary prevention.
jean publiee each vaers complaint needs to be requied. anybody who gets a vaccine and has a health injury needs a full investigation. and we need to be able to sue big pharma on vaccines. why they get immunity from suits is absolutely and totally wrong. clearly they make mistakesin production and have caused massive massive injury to people and walkede away from the injured people. every single doctor needs to be fined $500,000 if they fail to file a vaccine cmplaint when it has been told to them. and it needs to be fully investigated. this dismissal of vaers complaints is [redacted].
Anonymous Please separate out severe autism. Severe autism is often left out of the discussion. Autistics self advocates routinely talk over advocates for people with severe autism. Please separate research for severe autism. More choices not less (farmsteads, planned communities with safeguards in place)
Christina Newendorp Invest in the needs of those with severe autism. This group is the most impacted and has the fewest resources.
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks. We spend lots of money and time to certain tasks without any positive outcome. What works and what does not work? 1 )We need to develop Immunoglobulins for strong immunity. 2) We need to correct MTHFR problem. Basically, we need medical community help and insurance to cover all expense. 3) We need to eliminate Autism with help of science and technology. 4) Why mother's milk help to prevent Autism? 5) Why people with Autism have all kinds of Allergies? 6) Why people with Autism family have Auto-immune disease? 7) We need computer based training in all school for speech, mathematics, life skills, social skills, and safety. They are visual learners. They have a communication problem. They are very smart sensitive beings. They have sensory issues. 8) We need to develop Job training and employment opportunities for better future. 9) They can make money and live their life. We have to ask high tech companies to start Job training program for people with ASD and provide employment. 10) We can work with non-profit organization.
Liz In designing public spaces, consider the ways that sound moves and echoes, as well as lighting. Create spaces such as a sensory room that people have access to, or a space where someone can go to decompress.
Anonymous We desperately to know how many autistic adults, either diagnosed or facing barriers to diagnosis, are out there and how to begin meeting their needs.
Amy Mason, Islands of Brilliance Most of my response to this question is in question number 6, but I'll copy it here again for reference: 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.
Elke Drayton The USA has the worst system in place for people with disabilities. Look to Canada how they deal with that for inspiration. Job Training is a must for everyone in the USA. Grew up in Germany and it helped me more then a piece of paper with a college degree.
Anonymous Correctly.
Anonymous I think we really need to start questioning the focus of Autism research as at the moment there is a lot of attention based on early therapies and finding the cause of Autism, when the Autistic community have identified QoL studies and supports for sensory issues and self-regulation as huge impacts in our daily lives.

Multiple Themes Addressed

Respondent Response
Michelle Williams Public /private partnerships, dissipation of info and workforce development Themes Addressed: Collaboration, Workforce
Anonymous Collaborating with communities on workforce development programs for those within their communities. IE mainstream agency funding where service agencies have one point of contact rather than competing against one another for gov't dollars. No private business understands how service agencies are funded when working with a possible employee who has ASD nor should they have to fight through one of the most difficult federally and state funded programs. It's way too complicated! Themes Addressed: Collaboration, Workforce
William Ash I think studies need larger sample sizes. I also think there needs to be a way to quantify or qualify the difference in the autistic population. I think having more autistic people support research design can be very valuable. I had worked with a British researcher in London to develop a survey into quality of life issues. I believe the collaboration was very valuable for both of us. I have found many research questions that appear straightforward are really ambiguous to an autistic person. This seems to be common: I have read research where question for alexithymia and suicide ideation are not as predictive for autistic people as they are for a more general population. This make sense as we are cognitively different. I also agree more needs to be done with workforce development. This needs to also be supported through promoting the benefit autistic people bring and how to create positive working environments to capitalize on those cognitive differences. Themes Addressed: Research, Workforce
Anonymous (1) Incentivizing education and training for community providers, clinicians, physicians, dentists, direct support staff, etc., (2) developing supports to reach a diverse population [rural families, non-english speaking, etc.], (3) developing residential housing and supports for individuals with caregivers who are aging, (4) developing a safety net or program so that individuals receiving federal benefits can still work without fear of losing their benefits (or fear of struggling to re-obtain benefits after losing their job). Themes Addressed: Inclusion, Workforce
Susan Corry, parent of a dev. disabled young adult Workforce development and collaborations with public/private partnerships for housing and other adult-related services is essential for dev. disabled adults' long-term success. Themes Addressed: Collaboration, Workforce
Jamie Doyle The most interesting autism studies I have read have thin statistical designs. Workforce development efforts should be focused on training the next generation of researchers with rigorous statistical training to take advantage of data repositories such as NDAR and also EHRs. Themes Addressed: Research, Workforce
Tonja Nolan, independent research in workforce development along with strengthenimg research collaborations and public/private partnerships. Themes Addressed: Collaboration, Workforce
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont Making. Partnership with. Local Town's and. Statewide. Sponsorship. Within. The. Systems. To. Work. With. Adults and. Children with. Specialized. Learning. Needs. Transparent inclusion diversity information equally for all is a must have priority for Citizens with disabilities. Themes Addressed: Collaboration, Inclusion
Jan Carpenter, parent of two handicapped children 1) The government should collaborate with ""The Autism Housing Network"". They have invaluable statistics and information on this issue. 2) Do more of these surveys and ask parents and professionals what is and isn't working in regards to government programs and do away with the ones that aren't helping. Themes Addressed: Collaboration, Inclusion
Bill Raymond, Autism Advocate 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: Collaboration, Workforce
Sherrie Kinard, Parent of 2 Spectrum Children Research workforce development and strengthening public/private partnerships. Themes Addressed: Collaboration, Workforce
Anonymous I think the biggest priority is funding beyond childhood. Autism doesn't just go away. In addition, federal databases need to be free of bias, which they are not necessarily, being that some are partially sponsored/contributed to by Autism Speaks. Research workforce development should focus on including autistic voices in the research realm. Themes Addressed: Funding, Research
Ryan -have autistic adults and leaders at every point where decisions are made about/for autistics -require more neurodiversity positive policies and practices and shift entire systems from viewing autistics in deficit-based models and through strengths based and inclusion models -focus more on change barriers throughout society that limit access to autistics thriving -focus on decreasing dissemination, marginalization of autistics; -address equity issues and implicit biases against certain way of thinking and viewing and experiencing the world Themes Addressed: Acceptance, Inclusion
Helen Leung research workforce development (more specifically, training researchers to collaborate meaningfully with actually Autistic people and weeding out researchers who do not respect us). Themes Addressed: Inclusion, Workforce
Anonymous 1) Medicaid money should follow individuals across state lines. People with relatively rare conditions, e.g. neurodevelopmental conditions, are fortunate to find anyone who can help them and are exceedingly unlikely to find adequate medical care, residential arrangements, employment opportunities, or social connections in any particular state. 2) Approval for Medicaid services in a new state should be based on reciprocity and not require new and redundant medical and psychological evaluations. 3) Mental health care parity, as required by the Wellstone-Domenici Mental Health Parity ? of 2008, is not being achieved by Medicaid in Ohio, and perhaps other states, or by private insurers. Enforcement needs to be enhanced nationwide. 4) The ADA is not as effective for people with neurodevelopmental and intellectual disability (NDD/ID) as it is for people with physical disability. Legislation that establishes parity in this respect should be pursued. Care availability for adults with NDD/ID is often abysmal and should be viewed as a source of national shame. Standard of care for adults with NDD/ID is often inadequate care. The boundary between psychiatry and neurology, as practically enforced, is arbitrary and in many cases harmful. Autism is NOT a ?spectrum,? a term that fosters flawed inferences. Individuals cannot be straightforwardly ranked as more or less ?autistic.? Anyone with a trait or two, to whatever extent, that is found in people with autism is not necessarily best thought of as ?on the spectrum? Themes Addressed: Funding, Standardization
Autistic Self Advocacy Network ASAN opposes the IACC’s focus on developing biorepository infrastructure for the purpose of biological autism research. As seen with the now paused Spectrum 10k study, the autistic community has serious ethical concerns with the creation of biological autism data banks, particularly when such projects lack strong autistic oversight. These types of projects have historically focused on ascertaining the genetic causes of autism in a transparent attempt to prevent more autistic people from being born. Instead of contributing to research that is opposed by the community being studied, we recommend that Question 7 funding be used for research issues that improve our lives. Any data infrastructure or biological data projects supported by federal funds must be developed in partnership with the autistic community and with primary oversight by autistic people ourselves, with explicit aims and clear safeguards to address our community’s ethical concerns and honor our priorities. Themes Addressed: Inclusion, Research
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin Address wage and benefit issues currently resulting in underpaid home healthcare workers. Address lengthy waiting lists that result in delays for services. Create neurodiversity-affirming education for the general community to promote acceptance/inclusion. Recognize that neurodiversity-affirming education is part of the reparation process, and also needs to be directed toward the autistic community and our allies: parents, diagnosticians, therapists, teachers, etc. Address the limitations of Medicaid funding, frequently refused by service providers. If Medicaid cannot adequately support the needs of autistic people, it is time to consider a different funding model. How are interventions and infrastructure currently being monitored? We must determine what success looks like and build the surveillance tools to measure progress and effectiveness. Themes Addressed: Acceptance, Funding, Research, Standardization
Anonymous ASD surveillance research is [redacted] up. Sorry, but it's just disturbing. We do need better dissemination of research to communities, using easy read, and research collaborations with actual autistic people. Themes Addressed: Inclusion, Research
Anonymous Hire and work with autistic consultants, researchers, and experts to inform these policies. Non-autistic people do not know what autistic people need. Strategic investments and reforms should be made to benefit persons who require AAC, including: (1) Collecting reliable state-level large population survey and administrative data to better identify and address the needs and abilities of such children and adults. (2) Requiring states to assess and improve lifespan education, HCBS, and other opportunities and supports to autistic nonspeaking persons and others requiring AAC. (3) Barring the use of standardized IQ tests on a person if they require but have been denied the supports needed to fluently access and use robust AAC. (4) Creating and enforcing safeguards and processes to ensure that all adults who require robust, language-based AAC—especially those that now lack it—are afforded timely access to robust language based AAC. (5) Offering guidance and technical assistance to states, self advocates, and others on states’ obligations to ensure adults who are denied access to robust AAC: (a) receive such tools, training and support to effectively communicate throughout life; (b) are no longer subjected to lifelong silence, isolation, loss of autonomy, and social death because they lack access to AAC; and (c) are supported by HCBS and other direct support professionals are well-trained, compensated, and skilled in meeting communication needs to live life to the fullest. Themes Addressed: Inclusion, Standardization
Breanna Kelly, Benchmark Human Services Workforce development is a critical and essential. There should be an investment in hiring neuordivergent staff to assist with policy and program development. Private and Public partnerships will open many opportunities as well. Themes Addressed: Collaboration, Workforce
Korri Ward, parent, science teacher, local advocate Many states will not fund a program or develop policy unless they have numbers of individuals, so they can develop a budget and understand the impact of the program. We need the numbers of adults with autism, rates of aggression toward family members and staff, and rates of ER visits. We need to study adults that are successful in the community and create that programming for other people with autism. Students in high school and college need to be encouraged to work for HCBW providers instead of fast food or fashion. Maybe scholarships or grants for these students while they are working with people with disabilities in the community. How much more amazing would our teachers and nurses be if they had experience working with adults with appropriate supportive living assistance services. (They would be awesome! - I know this from my son's former staff.) Themes Addressed: Funding, Workforce
Lindsay Shea, Drexel University Funding is needed for infrastructure, including public health infrastructure for individuals with disabilities and autistic individuals specifically. We need a coordinated national plan with measurable short, intermediary and long term outcomes. The plan should be informed by those with expertise providing support to individuals with ASD. Particular care should be directed to including people with Autism, family and caregivers and those with systems expertise. Emphasis should be placed on unserved and underserved communities –not only those who are resourced and have access. Ensure there is inclusion of perspectives of those across the ASD spectrum. We need a National Taskforce—include individuals from many sectors supporting the needs of people with ASD. Themes Addressed: Collaboration, Funding, Inclusion
Stacy L. Nonnemacher, Pennsylvania's Bureau of Supports for Autism & Special Populations There is a need for more embedded research where research priorities are dictated by the disability system, individual, family, and provider needs. This research would be disseminated in a manner that is functional and meaningful to those who are providing the support and services to autistic people. Themes Addressed: Inclusion, Research
Anonymous There is a great need for professionals (mental health professionals such as therapists and psychologists, but also other professionals such as teachers and healthcare professionals) to be educated about autism, not outdated myths about autism, but honest truths about autism from autistic individuals. It is extremely difficult to find professionals who understand my needs, and I live in an area with lots of resources. I cannot imagine trying to find support in a less affluent area. Themes Addressed: Acceptance, Workforce
Anonymous 1) Much more research needs to be conducted by autistic researchers. Yes, they exist. 2) Research needs to be held to a much higher standard reagarding samples sizes, methods, confounding variables - in short, actual scientific validity. 3) Research needs to be held to a much higher standard regarding the informed consent and ethical treatment of autistic research ""subjects."" 4) All the research in the world won't help as long as policy makers and care workers don't know about it and continue to act according to outdated and harmful information. 5) Conflict of interest is a big problem in autism research and it is often undisclosed. 6) Autism research needs much more stringent protection of participant data and participant privacy. 7) While autistic researchers exist, many more would be available if academia were not full of barriers for disabled students and researchers. 8) Lobbying by private ""autism service providers"" disproportionately affects funding for research and service delivery. Themes Addressed: Inclusion, Research
Jacqueline Ward Start asking autistic individuals for their opinion and experience. Awareness, acceptance, and collaboration between school, family, employers is essential. Promote the gifts of autism and change the negative dialog which begins with the word ""disorder."" Themes Addressed: Acceptance, Inclusion
Autism Science Foundation Researchers, advocacy groups, government agencies and related stakeholders need to remove the research silos and other barriers to collaboration that are characteristic of the current research infrastructure. Every ASD research project should be designed to share data regarding: • ASD prevalence: There should be a shared monitoring system to better understand who is affected by ASD in the US, why there are differences in prevalence, if any, and how these figures change over time. • Family communications: Any family enrolled in a study should be provided with updates on the impact of their participation in research, updates on research findings, and information about other research of interest. • Basic demographic data: Researchers should collaborate to create a shared list of demographic data that is used across studies, including race, ethnicity, age, cognitive and verbal ability (if known), and other metrics. • Genetic profile information: Ideally, all collected genetic information should be shared with all ASD researchers. In addition, we urgently need to redesign the current system of linking patient registries and data sources to each other. All researchers would benefit from an easily accessible repository of who is collecting data and how many families are involved. Finally, we need to provide more support to advocacy groups for rare genetic disorders; too often these groups fund and conduct identical research studies which waste valuable time and resources. Themes Addressed: Collaboration, Research
Anonymous Who coordinates research findings across the board into policy and practices to service children & families? Transdisciplinarity nature of understanding and addressing this complex developmental disorder. How then translate knowledge and research outcomes to the public, parents, and teachers? Need to connect public understanding with real people with ASD. How that can help every single family regardless hen important research findings emerge How will they be translated in knowledge that fosters the most appropriate educational interventions for the child and family. research priorities should be to connect the dots in disciplines and policy to make it possible to develop the appropriate family & educational supports. Themes Addressed: Collaboration, Research
American Academy of Pediatrics The AAP believes it is important to build a system of support that persists throughout the lifespan and offers increasing opportunities for social integration and independence, while reducing burdens on the individual and caregivers. The Academy encourages the development of collaborative models for the care of individuals with ASD, as many people with ASD may not have access to a specialist, such as developmental and behavioral pediatrician or a child and adolescent psychiatrist, and instead rely on primary care providers. Those providers need effective and innovative ways (telehealth, ECHO, autism case managers, etc.) to collaborate and coordinate across systems of care (education, work, mental health, behavioral health) that are flexible and do not further burden providers or individuals with ASD. Themes Addressed: Collaboration, Workforce
Daysi Jimenez Tenemos que movernos del punto de vista de deficit a fuerza. Enfocarnos en el potencial de la persona primero y ver como hay que ofrecer apoyo. Si continuamos viendo la discapacidad, no le ayudamos a la persona a salir adelante. Consultar con personas autistas que tal vez quieran compartir su voz para saber mejor como se les puede ayudar. Reconocer que el rechazo social ha causado mucho dolor a personas autistas. Translation: We have to move from a deficit point of view to strength. Focus on the potential of the person first and see how to offer support. If we continue seeing the disability, we are not helping the person to get ahead. Consult with autistic people who may want to share their voice to better understand how you can help them. Recognize that social rejection has caused a lot of pain for autistic people. Themes Addressed: Acceptance, Inclusion

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