Question 7 Responses

What Other Infrastructure and Surveillance Needs Must Be Met? (Surveillance, Infrastructure, Workforce, Outreach, and Collaboration)

Themes from Responses to Question 7

• Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
• Research should include the voices and participation of individuals with autism and their families
• Increase collaboration and coordination of research including interdisciplinary research
• Increase collaboration and coordination among services providers
• Need research infrastructure, i.e. databases, research and clinical trial policies
• Improve services infrastructure
• Increase the dissemination of research, and the translation of research into practice
• Need greater development of the research workforce
• Current priorities are appropriate/important
• Prioritize services and interventions rather than research
• Multiple Themes Addressed

Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age

Respondent	Response
Clarissa Kripke, MD, University of California, San Francisco	Health surveillance--foundation of public health. Workforce training in Supported Decision making and self-direction. Workforce training in trauma-informed practice.
Jacquelyn Eder Sample	1. Monitoring of and reporting on the rate of adults with ASD living independently or not; rate of adults with ASD employed and places/frequency of employment; rate of adults with ASD who pursue higher education and training.
Heather Price, Parent of two children with ASD	The increasing numbers of autism diagnoses among the lowest functioning are not related to better diagnosis or to wider understanding of the condition. Where were the multitudes of nonverbal adults just one generation ago? Where were the folks who couldn’t provide the most basic self-care for themselves?
Anonymous	Surveillance - start looking at children/adults that recover, so that we know what the methods are. So far, there are many reports of recovery, yet not one bit of interest coming from the government in that claim of recovery.
Jennifer Muyot	ASD surveillance research
Anonymous	ASD Surveillance
Resa Warner, Parent of 15 year old autistic son	This question sounds like the CDC is not doing its job.
Julie Tracy, Julie+Michael Tracy Family Foundation/Urban Autism Solutions	As individuals with autism age, more information about life span metrics into the 30s and 40s and beyond would be most helpful in the future.
Karen Connelly, 2 children in the spectrum	ASD surveillance
Rhonda, parent of Asperger's child	While the word "surveillance" conjures up fear in people, there is an obvious need in the mental health community to balance freedom with protection of the community. There needs to be a mechanism in place for care providers and the medical community to initiate protocol for stabilizing medications and providing for individuals who rely on others to get daily needs met. As this is often family, there is no documentation trail of needs of the individual's routine. Whether illness or tragedy, a time comes for everyone that the torch must be passed on to another caretaker. It can be even more difficult for "high functioning" folks, as they can seem independent in the community. People need a way to pass on essential information and search for an agency to take over. Medical providers also need to be able to tap in to request supports for people who may not realize what they need.
Stacey Ireland, Parent	ASD surveillance research
Parent	I dont know what is meant by "surveillance research." I do not want a police state that monitors every step a child or adult with asd takes. That wouldamount to disability profiling. No one wants that. Most people with asd or dd are capable of physical autonomy and they should be allowed to have it. Supports could be developed for them to call on as needed. The goal should be self-determination and autonomy, freedom of movement and choice, to the maximum extent possible. But also social inclusion. Transportation is an issue for many edpecially in large lumbering cities and rural areas. So userfriendly technology, apps and human based interventions should be more prevalent and better funded to avoid corruption. Safety is paramount but not to the extent of denying people with disabilities opportunity, self-determination and choice. They are not children. Gps devices such as those found in phones can be useful in the event of children wandering but could be abusedif used without an adult with disability's consent or as some type of implant. Housing is also a great need. Young adults with autism should have a place to go away from their parents, a place that they can call their own.
Tita	surveillance research
Balvinder Ghag	ASD surveillance research
Parvathi Gontina	ASD surveillance and research
Jim N, Parent of a fomer toddler diagnosed with autism	Research how many children are over-diagnosed with ASD. Research how an ASD diagnosis is used as a tool to win custody in family court. Hence, are children and health practitioners being exploited so the parent gets an ASD diagnosis? The family courts recognize a special needs child needs stability in a 1-parent household, and therefore parents may pursue an ASD diagnosis to win a custody dispute. If research shows this is the case, then screening must occur to better monitor the children of these ASD-motivated parents.
Chanda Jackson	ASD surveillance.
Idil Abdull	We have less than a dozen states with the ADDM system and that should speak volumes. We also don't know why ASD is higher in NJ, UT and lower in AL. Plus counting and telling us "yep - more autistic kids every few years" isn't helping. We need to know why, can we get earlier help, can we prevent ASD symptoms, etc. Finally, while most of these questions are good, I am hoping they can revised or at least updated to include emerging issues such as law enforcement and autism, wandering, nonverbal and expanding minority providers. I thank you all for all you do. We really appreciate all of your hard work and dedication. Thanks Idil - Somali autism mom
Marc Freeman	ASD surveillance research, research workforce development and strengthening collaboration should be priorities, especially as they apply to adults. But more than research, we need actual policies that meet the needs of the adults with ASD so they are not falling through the gaps.
Dr. Tanya Skalecki, The Arc Mesa County	Measures need to be put in place to help ensure that the research number of ASD are accurate. This is critical for appropriate interventions, supports, services and funding. More public awareness will bring about a stronger community in collaboration of services and job development to businesses that benefit from the autistic mind. Too many individual with ASD are being placed under different educational eligibility categories and under co-occurring mental health determinations/diagnoses. Individual with ASD need to become self-advocates and by understanding their disability, they can successfully advocate for themselves, and help others understand their actions and needs.
Maria Grullon, Mother of autistic boy	Surveillance research and dissemination of the information. Training police and firemen and EMS personnel to recognize autistic symptoms and appropriate respond without escalating a misunderstood behavior. Workforce and housing development opportunities, and more incentives for business to accept people with autism in their workforce.
Anonymous	Assessing the specific symptoms and severity of high-functioning people with ASD to ensure that they are correctly counted - that people without ASD aren't included in prevalence counts and vice versa. Helping smaller researchers access patient populations as well as control participants. This is a major expense and it really limits innovation.
Rebecca	Work more with autistic people instead of keeping them at a distance - this prevents you from "othering" them and treating them as "less-than". Find ways to prevent prejudice and discrimination, especially in schools and in work.
Bronte Abraham, Parent	Workforce development and disseminiation of best practices/successful models for inclusive employment, microenterprise etc. is important. Surviellance for these types of programs vs. incidence rates -- is more important to me these days.
Jill Escher, Escher Fund for Autism	There is a terrible myth that autism rates have not actually increased but instead that we have just failed to count the adults. California is the perfect state in which to conduct an ASD Adult Autism Audit to understand autism rates over all age cohorts, owing to our robust DDS data. It is imperative that we finally lay to rest the preposterous idea that severe autism has always been part of our communities, at today's DDS rates, but that prior generations just failed to notice it.
Kathryn Hedges	We need a comprehensive survey of adults. We need to involve autistics in research. Even if a college educated adult Autistic is different from a nonspeaking child, they will know what research ideas are dehumanizing or based on false stereotypes. (Such as most of Simon Baron-Cohen's work.)
Maria Grullon, Mother of autistic boy	we are ignoring the fact that we have the biggest of threats to our present and future generations in the rates of autism.

Research should include the voices and participation of individuals with autism and their families

Respondent	Response
Cassandra Stalzer, Parent	Brave leadership. I don't know who is the voice of advocacy for ASD in Alaska. It seems that we are silo'ed and competing for resources that we miss opportunities for collaboration and innovation.
Carol Moore, Early Intervention/Early Childhood Special Education	Bringing in the voices of family and individuals with autism into the conversation must occur. They need to guide collaborative efforts to meet their needs, and they have first hand knowledge of the condition, experiences, and insights which are invaluable.
Catherine Pinto, Parent of adult son with Autism & NonProfit Board Member AACORN Farm	Advocacy organizations in America are fighting a battle against adults with autism. They are refusing to accept that an adult with autism can be happy in a setting that advocates disapprove of. It does not matter what the ADVOCATES want..it matters what the INDIVIDUAL wants. It is their life and they deserve to have their choices respected and fully funded.
David Feickert	Having more people that have ASD be more invloed with ploicy changes for example health insurance.
Anonymous	Including autistic people's direct life experience, struggles, and successes as part of research and services process. Autoethnography research type of studies that actively incorporate personal narratives & storytelling.
Anonymous	Clinical trials were required for ped. cancer in the 50s. It should be the same with ASD now
Michelle Hoffman, WA State Dept of Health-Healthy Starts and Transitions Unit-Children with Special Health Care Needs program	There needs to be a connection not only to researchers and medical providers, but with families. Families need to be part of the said infrastructure. Not only to inform the research (and not just with a survey) but to provide bi-directional collaboration on successful outcomes. Often families are so frustrated with the difficulties they experience navigating systems, they get over-protective of their youth and adult kids so that they do not support community inclusion for safety fears. Parents and families need to be involved early on when kids are younger to develop an ongoing plan, with the support of medical and social services providers, that foresees a life of independent community inclusive living, not a segregated "protected" existence.
Anonymous	LISTEN TO AUTISTIC PEOPLE, MAKE THE [Profanity Redacted] SCHOOLS ACTUALLY PROVIDE SERVICES IN LRE WITH A GOAL OF INDEPENDENCE AND PAY ADEQUATELY FOR THE SERVICES NEEDED THAT COMPETENT PEOPLE CAN BE FOUND TO DO THE JOBS. hOWEVER I WILL NOT HOLD MY BREATH WAITING FOR THAT TO HAPPEN FROM THE GOVT. Another [Profanity Redacted] survey monkey survey.
Lynda Dominal, parent	To really take into consideration what the over all population of autistic people need. Of course there can change over time. But alot of research and policy has been directed toward children and then little for adults and the aging
Sara Luterman, Self-advocate	I would like any research on ASD surveillance to involve autistic adults in all steps of the research process. I am concerned about having the rights and freedoms of autistic adults ignored "for our own good." Sometimes people run away because they run. Sometimes people run away because they are trying to escape an abusive situation. Assuming that behaviors don't have a reason is a problem.
Tracy Robbins, mother/care giver	have the researchers do their work living in the home of the client for X amount of time. That's the ONLY way true social research can be conducted.
Alanna	EW! Puke me please!? Surveillance?! No!!!! We are not dogs. Stop treating autistic people like pets and treat us like humans. Don't. Just don't.
Erika	One thing that stands out is the lack of autistic voices in research about autistics. We are the best experts on autism, but we are rarely consulted.
Laurie	There are so many tests and research projects out there being done, but I think it takes away from the person with Autism. My son was "evaluated" so much that he is now averse to hospitals of all kinds. He starts shaking even if the appointment isn't for him. That's when I stopped taking him for those appointments.
Loreen Booker Brown, Career Veteran in the field o ASD, AND DD populations	My initial response was lost and I was almost finished. I will follow-up briefly with the need for accountability address. The school system are responsible for 18 academic school years. Much more could be accomplished with professional and knowledgeable watchdogs who also provide professional expertise. Workforce development and placement is a profound deficit with the ASD/DD population. Establish more research on and collaboration regarding comorbid depression and anxiety disorders with the ASD/DD population. Create opportunities to utilize ASD/DD activist and advocates to monitor and recommend greater success. Demand that work-study participants a paid on a sliding scale. Create grants so that parents can receive real and honest training on IEP, SSP and ISP. I feel encouraged by this opportunity to share my concerns as an advocate, professional and parent. Loreen Booker Brown, MA
Susan H.	Surveillance, just like lab rats. Goes back to helping ppl. Ya'll focus on stuff in the wrong way. Once u figure out that it is the adults you need to be asking you might begin to understand what we are about and how to teach the kids so they dont end up in same boat as we are. Alone, jobless, friendless, no support. [Profanity Redacted]
JLG	Workforce development to include the Asperger end of the spectrum - we are frequently expected to sink-or-swim since we're so "high-functioning." Yet a job means administrative paperwork and procedures and we are not at all "high-functioning" in that area. Strengthening collaboration. If you want to know what it's like to be an autistic adult, collaborate with us, ask us. Ask a larger sample of us. Include lots of women. Ask us about our childhoods, what was going on in our minds (a lot!) when we were in non-verbal periods. Ask us. We are the treasure trove of info regarding this neuro-type. When I was diagnosed it didn't teach me anything new about autism, I already know myself. Learning that my natural neurology is called "autistic" allowed me to then learn about neurotypicals. We'd love to collaborate but the neurotypicals are better equipped to set that up.
Anonymous	The best way to understand what is happening is to ASK SOMEONE WHO IS AUTISTIC. People with autism can be verbal. People who are autistic and are nonverbal can frequently use computers and other technology to communicate. There are some incredibly erudite blogs written by nonverbal autistic people that are available for free on the internet and that talk about what it's like to be autistic. Science seems baffled about why autistic people do certain things. Why don't you just ask us? Once again, please consider asking an autistic person! There are not enough resources for autistic people or for parents of autistic children that are written by autistic people! We're here, we're talking about our experiences, but all the big organizations want to talk about is ABA (which is yucky) and how strong are parents are for enduring us (which is also yucky). Please stop advocating yucky things. Ask an autistic person about their experiences!
Anonymous	Ask children and adults what they need and what is challenging and why. Ask them what is most helpful and why. Be respectful and accepting of privacy and the right not to participate in research. Treat people as people with the utmost dignity and respect.
Anonymous	I wish researchers would design studies with our input and cooperation, instead of "about us, without us". Many studies were clearly not designed with input from autistic people. If you want to understand us, ask us!
Anonymous	Stop funding anything that isn't Community Based Participatory Research and using the social model of disability. Include those with autism in every aspect of the research process.
Cheryl Eng	In the research area actually listen to what people with autism say their issues are and what they actually need. There seems to be a dismissal of their views as if because they have communication and social issues they are unable to speak for themselves. Many non-verbal individuals are highly intelligent and know what kinds of supports they need. Listen to them. Listen to their family members. And actually train the people who will be helping, supporting, and collaborating with them, properly.
Anonymous	Incorporate people dx with autism into their own studies.
Katherine Hall, Autism Society of Northern Virginia	Collaboration between researchers, autism experts and Autistic adults is sorely needed. Also, Autistic supervision is important over every aspect of research infrastructure.
Areeba	My advice to the IACC panel is to being creating initiatives and scholarships sponsored by popular news companies and the media at large that invite females with ASD to step forth and share their experiences with their condition via written stories, art pieces, or short films for the sake of strengthening outreach and disseminating research in a more intersectional, individual-oriented approach . Having struggled with ASD my entire life but only having found out recently, I can attest personally to having hidden my condition under the guise of a studious, shy girl. In reality, I like thousands of other girls that are forced to hide their condition due to sexist social standards, ended up internalizing my ASD and suffering largely alone. If girls and the mainstream engaged with one another through personal pieces, we'd have greater visibility, and this would generate more understanding in society overall. Researchers, parents, teachers, and peers would all gain accessibility to seeing Aspiegirls for who they are, and so would Aspiegirls.
Shannon Des Roches Rosa, parent	The top priority should be collaboration with autistic people of all abilities (including those who communicate using AAC) to establish the most useful research directions, policy issues, and gaps. In term of representation of abilities: due to the inherited nature of autism, many autistic people who would be able to collaborate also have children, siblings, spouses, and other relatives whose autistic traits vary from their own. These individual and families are a rich and underused research and policy resource.
Anonymous	Parents(like myself) who are strong advocates could be a great resource. I spoke to my pediatrician's office staff and they think it is a fabulous idea. I am constantly meeting parents and I feel great when I can pass on information that I have gathered through the years. I am very passionate about it and hope that maybe it could become a career.
Anonymous	Again, please improve screening for all ages, provide appropriate training to far more medical and other professionals, and educate on more 'presentations' -- not just the young (Caucasian?) males, or most severely challenged. A bit of funding for autistic working adults to communicate good strategies to others online might be very cost-effective. (Apologies if I just haven't found it...) Please use more surveillance of the communicated needs of autistic people as guidance for funding priorities, not just relatives of severely impaired children. There are huge numbers of mildly autistic adults in society, but we tend not to be the best communicators. (What a surprise!) It is possible that (neurotypical) parents of more severely impaired children may be better communicators, more socially connected, wealthier, and overall better at getting support for research that supports their view of autism, than the potentially much larger population of "high-functioning" autistic people who are suffering in certain ways, needlessly. A thought re. research collaborations: as autism appears to be an issue involving brain connectivity, why not include more mathematicians and other people who study organization of patterns and systems -- like topologists, systems theorists, even computer scientists, etc?
Anonymous	Strengthing collaboration between autistic people and the research. Autistics have a wealth of information about themselves that researchers have ignored. Involving actually autistic adult people in the research and data collection would be life changing for autistic kids and their neurotypical family members.
Morgan Smith, An Autistic Adult	The top priority going forward for autistic people should be asking autistic people what we want. Autistic people should be a considerable if not majority of decision makers when it comes to us. Strengthing collaboration between autistic people and everyone else will help us all in the long run, as we are perfectly capable of telling you what we need, of you give us a chance to speak for ourselves.
Anonymous	Strengthening collaboration, especially with members of the autistic community. Going forward, let's work with ASD individuals and give them a voice in their futures, instead of doing things to them or for them. We need to empower individuals with ASD to live their own lives.

Increase collaboration and coordination of research including interdisciplinary research

Respondent	Response
Anonymous	Collaboration between agencies is desperately needed. While I understand that NIMH is a biomedical organization; autism is not purely a biomedical issue. It is a lived experience that encompasses health, education, employment, community, transportation and more. Therefore, IACC needs to strengthen collaboration with non-biomedical agencies (e.g. Education, HHS, Labor) in order to address these needs appropriately.
Chloe Dansinger, grandparent of six year old boy with high functioning Autism	strengthening collaboration
Charles Doran	strengthening collaboration
Frank J Kelly	I think we need to accept that the genetic studies are telling us that we are really looking at a (large, perhaps) number of different underlying neurodevelopmental disorders that all result in the same social / behavioral response. It is as if we are looking at treating "fever" without understanding the bacterial/viral/immune mechanisms. We need a truly "Systems inspired" approach that tries to break the problem down into sub-problems (e.g. immune) but understand that the immune system works across bodily functions and we will need to simultaneously break down the problem but also break down the silos so that GI specialists are working closely with neuroscientists and neurobiologists to understand each "subtype" of autism in a holistic manner. Not easy I know. But we must as our current silo'd "all or nothing" approaches continue to struggle.
Hannah Reed, MD, Yale Child Study Center	I believe that the most efficient, well-informed, and easily translated research will occur when it it is collected as an ongoing and integrated part of routine health care. An integrated research-clinical care infrastructure would promote longitudinal, multi-disciplinary studies as well as family-researcher-clinician collaborations.
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer	Strengthening collaboration. Some of us are making amazing connections out here, but some are so "silo-ed" they can't see the forest for the trees. Let's all work together as we circle the same hill and connect the dots/parts/our hands. Pretty sure we all have part of the same animal (elephant) but just can't see that yet. (Functional med, behavioral med, neurology, EDS community, MCAD, psychiatry, nutrition, autoimmunity, more.) Thanks!
Jennifer Hane	Collaboration
R. Walker	Research Priorities: Fetal Immune System Policy Issue: Waiting lists for therapy, housing, Collaboration: work towards lack of duplication, or specificity of "type" of autism Education: work towards tolerance of developmental differences and study particularly autistic development instead of making autistic's more "normal" X 1000.
Anonymous	Strengthening collaboration
Amy	Strengthening collaboration
Maria Montoya, Enroll Detroit	Stronger collaboration
Anonymous	Strengthening collaboration
Niki	Research should be increased and collaboration should the key .
Anonymous	Programs like the Interactive Autism Network (a partnership between the Kennedy Krieger Institute and Simons Foundation) and collaboration between the various FL locations of the Centers for Autism and Related Disabilities (CARD) provide a foundation for others to follow. More agencies such as these should be encouraged, funded through grants and their work publicized for societal awareness.
Blake Hall	Strengthening collaboration.
Nancy Cheak-Zamora, University of Missouri	strengthening collaboration; social and behavioral research
Anonymous	Schools and research institutions need to get better at keeping each other informed. The schools are in the trenches. They see the kids every day. The researchers analyze data. They need to share that data.
Elissa, Parent	Connection with school systems and schools
Gillian Pilcher, Parent of 2 with high functioning Aut	Strengthening collaboration. Schools and colleges often ignore parents because of the age of the child or they think they are "too smart to act like that."
Heidi Stewart	Strengthen collaboration across research groups: many doing same research and don't want to share work- all to help with children and familiess
Jacqueline M Ward	Strengthening collaboration for workforce development
Anonymous	Strengthening collaboration across lifespan.
Anonymous	strengthening collaboration
Anonymous	strengthening collaboration
kimberly williams	strengthening collaboration
LorRainne Jones, Kid Pro Therapy Services Inc	I think that strengthening collaboration between disciplines and professionals is critical. For example, we know ABA methodology is effective for skill acquisition. We must fund research to see how to we can strategically combine the best of ABA with the best of speech-language, occupational therapy, physical therapy, and traditional special education to develop highly effective innovative and cost effective programs for children with autism.
Anonymous	Strengthening collaboration, but I don't believe you will do it.
Anonymous	Schools and state agencies in charge of caring for people with ASD need to collaborate more efficiently. Here in NYS OPWDD and DOE oftentimes do not collaborate and many individuals lose out on programs because of this.
Anonymous	Strengthen collaboration
Anonymous	strengthening collaboration
Warren Schaeffer	Collaboration is essential.
Crystal Reuter	Strengthen collaboration.
Anonymous	strengthening collaboration
Kristen Brown, Parent of two ASD sons	Collaboration is key. There are so many dots to connect, the big picture will be missed if collaboration is not focused on.
Mary Schmidt	Strengthening collaboration
Megan Galvin	Strengthening collaboration
Melanie Pucino	Organizations working together, we need to do everything we can to help our children and understand ASD
Anonymous	Strengthening collabration. A multidisciplinary approach to understanding is key
Barbara S. Delsack, MCPS; CCS, Inc.;Independent consultant	Strengthening collaboration across different areas of study and those in the field.
Liza Krassner, Parent and UC Irvine Public Health employee	Collaboration and workforce development.
M. Hail	research workforce development, strengthening collaboration, research infrastructure needs
Anonymous	There needs to be a strengthening of collaboration and an acceptance of more points of view. We are a diverse group, a spectrum of individuals, with different needs, competencies, goals and preferences. Progress will require real inclusiveness ... the participation of private organizations // families // and individuals. There is so much to do...and so far to go.....and unfortunately, we seem to be going backwards to the time where "other people" want to tell us what is best for us and then force it on us via financial force. Consider this viewpoint......put it forward for consideration, and then fix that and go forward again. Person-centered, personal preferences, choice, dignity, respect, civil rights, support. Thank you for accepting our input.
Kristie Patten Koenig, New York University	Research designs and models that include key collaobration with stakeholder communities (self advocates) to provide for more meaningful outcomes
Racshelle Bean, Parent	We feel it is important to strengthen collaboration.
Anonymous	I suppose strengthening collaboration is an area with room for improvement.
Kimberly Perritt, Teacher	Workforce development, collaboration and integration of services that improve the quality of life for adults on the spectrum
Anonymous	stengthening collaboration
Anonymous	Assessing the specific symptoms and severity of high-functioning people with ASD to ensure that they are correctly counted - that people without ASD aren't included in prevalence counts and vice versa. Helping smaller researchers access patient populations as well as control participants. This is a major expense and it really limits innovation.
Anonymous	Strengthing collaboration between autistic people and the research. Autistics have a wealth of information about themselves that researchers have ignored. Involving actually autistic adult people in the research and data collection would be life changing for autistic kids and their neurotypical family members.
Anonymous	Dissemination of research information with strengthening collaboration. Many times you read about new information about autism but then no follow up. This has been going on for a very long time. "Someday in the future" a repeated phrase but the future is now. We need to shut down the Quacks and Snake oil salesmen who take advantage of vulnerable parents and perhaps harming the children.
Anonymous	Dissemination and collaboration are vital to a meaningful outcome for this population. Average-above average intelligence is squandered in sensory-numbing environments. Inclusion in chaos is a recipe for failure.
Tina Santana, Parent/Self	Strengthen collaboration!!!!! All of this research has to mean something to someone! Really though, I always look for research information. Also, I love when people take time out to ask, and speak directly with, my son. We can all learn so much from each other!
Anonymous	Strengthening collaboration, especially with members of the autistic community. Going forward, let's work with ASD individuals and give them a voice in their futures, instead of doing things to them or for them. We need to empower individuals with ASD to live their own lives.

Increase collaboration and coordination among services providers

Respondent	Response
A Kimbrell	1) Strengthening collaboration of service providers by outlining a model for states to use.
Anonymous	We need more cooperation and coordination between state agencies. It seems that the department of mental health, the department of human resources, and the department of education work against each other instead of together to help people.
Cheryl Fortunato, Parent	Collaborative systems so you don't have to complete documentation over and over again for different agencies.
Anonymous	Strengthening collaboration is critical. There are various organizations that provide services and supports but there is also the "fight for the dollar". Without collaboration, the individuals suffer. Workforce development is also critical. Assisting businesses to know how to work with individuals that have autism and tax credits to do so.
Kathleen Quill, Autism Institute	Strengthen medical and educational collaboration
Leslie Fox, US Department of Education - OSEP	strengthening collaboration between systems to support lifespan needs is important.
Lisa White, Family Member	workforce development and strengthening collaboration There has to be something more than carrying out groceries or staying at home all of the time. Also, not all agencies cross communicate.
Anonymous	Strengthening collaboration between services and across the lifespan.
Sarah Hunter	I would say strengthening collaboration between ABA and the rest of the autism community. Many Autistic adults have bad memories of ABA because of poorly trained techs and BCBAs. We need to make it easier to report BCBAs for abuse- right now, it is very hard to make a complaint to the BACB. And the BACB needs to be doing more outreach to members of the adult Autistic community. Otherwise, parents are not going to be willing to try ABA with their young children.
Scott Kramer, Director, GCA Centre of Adult Autism	I think stronger collaboration needs to occur between organizations. All autism/disability orgs have their own agendas and such. Even so, how can work together on things for the betterment of society and in the lives of these individuals?
Anonymous	Strengthening Collaboration with the educational system.
Trish Bawn	strengthening collaboration- specifically for adult services, higher education and healthcare
Cindy Montgomery, Teachability	Strengthen collaboration among autism agencies so that immediate action for each family is a reality. Stop trying to put our square pegs in a round hole. Instead, create square holes!
Allie	Strengthening collaboration between mental health professionals and doctors is essential to ensuring patients get both services for the medical piece as well as the psychologic piece
Anonymous	There should be more collaboration between ABA therapists, neurodevelopmental specialists, and pediatricians. More communication!
Jennifer Skjod	Much more collaboration between the schools and law enforcement on behavior interventions. More collaboration with physical health and mental health. More collaboration with colleges and high schools. Many more supports for families in how to navigate how autism impacts ever single person in a household and how to appropriately respond for maximum success. Thank you for this opportunity.
Anonymous	Strengthening collaboration between and within developmental service providers, medical and educational agencies and the family in a proactive, child-first manner.
Marilyn Arons, Melody Arons Center of Applied Preschool Research & Education	Infrastructure must connect medical schools, hospitals, under graduate and graduate programs in education so that there is a broader, more comprehensive understanding of the issues and how the meet the individual needs of the person with autism. Independent living/support and employment become the ultimate issues which we now face as a nation. Currently, there are no services more millions of adults with autism who live with their parents who are in their 80s and 90s. No remedy for this problem is in sight.
Pamela Blankenship, Parent/Grandparent of children with ASD	Greater collaboration among the wide variety of service providers who work with people with ASD with an increased effort to individualize supports, instead of "plugging" people into existing programs (day support).
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA	if you can get state/county departments of mental health to cooperate with state/county departments of developmental disabilities, that would be helpful. Also, insurance for ABA therapy needs to concentrate on integration into the community, not eating with a fork. It would be nice if education services were concerned with what happens when the kid goes home after class.
Tina T	Collaboration amongst service providers. Not enough educated people to handle the policy gaps. We need more emphasis on educating people on available services, financial assistance, medical assistance, therapies etc. Research is doing nothing to halt the growing number of children on the spectrum.
Jenny Latham	All the above
Carol Schoder Kotas	Basically a continuation of the last question. Long term, where will our children live, work, play, age in place? There are some small programs, some large programs, but none seem to be very person-centered or innovative. The lack of funding and staffing shortages is at a critical point. Focus needs to be on more collaboration, sharing of successes and failures and finding better ways and more choices for families.
Anonymous	More collaboration between Mental Health and developmental disability communites
Anonymous	Strengthening collaboration to provide job training and community living supports is needed.
M. Hail	research workforce development, strengthening collaboration, research infrastructure needs
Anonymous	There needs to be a strengthening of collaboration and an acceptance of more points of view. We are a diverse group, a spectrum of individuals, with different needs, competencies, goals and preferences. Progress will require real inclusiveness ... the participation of private organizations // families // and individuals. There is so much to do...and so far to go.....and unfortunately, we seem to be going backwards to the time where "other people" want to tell us what is best for us and then force it on us via financial force. Consider this viewpoint......put it forward for consideration, and then fix that and go forward again. Person-centered, personal preferences, choice, dignity, respect, civil rights, support. Thank you for accepting our input.
Anonymous	Strengthening collaboration with schools. Our public school would not even look at outside testing and refused to do an IEE even though District Autism Specialist qualified them for IEP and they had IEP for all their years in public school. the principal (now Asst. Superintendent) said she felt my kids didn't have autism because they occasionally made eye contact and are verbal. She cut the majority of their services and when they struggled tried to label them ODD/EBD.
Racshelle Bean, Parent	We feel it is important to strengthen collaboration.
Anonymous	I suppose strengthening collaboration is an area with room for improvement.
Anonymous	stengthening collaboration

Need research infrastructure, i.e. databases, research and clinical trial policies

Respondent	Response
Anonymous	Research workforce development
Safika Erselcuk	Research infrastructure needs
Seth Bittker	I think one of the biggest problems is the bureaucratic requirements put on researchers. If the FDA and others are not willing to think creatively about what compounds can be tested under what conditions and what outcome measures can be used, then I fear progress is going to be very slow. In addition a more calibrated appreciation of risk should be a part of review processes. If higher dose of a compound have already been tried in a different population, this should at least inform the thinking about whether to approve a trial in kids with autism.
Anonymous	research infrastructure needs
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Infrastructure needs
Anonymous	Fast tracking trials of research studies. Too many children with ASD are suffering, without benefitting from possible solutions. Research trials should be fast tracked. Researchers are making promising intriguing findings, but there are no trials for people suffering from autism to participate in. For instance, numerous studies are indicating a link between autism and inadequate gut probiotics. Research trials into areas like this should be fast tracked. Research trials should be fast tracked. Researchers are making promising intriguing findings, but there are no trials for people suffering from autism to participate in. For instance, numerous studies are indicating a link between autism and inadequate gut probiotics. Research trials into areas like this should be fast tracked.
Juergen Hahn, Rensselaer Polytechnic Institute	Research funding is the most important issue, especially for fundamental research that improves our standing of the causes of ASD. While there are other initiatives that claim to study autism, such as the brain initiative or statistical analysis that investigates how significant the rise in autism really has been over the last few decades, these efforts will not further our understanding of what is underlying ASD (for example changes in the brain will likely be the effect of something else and not the cause for ASD; I understand that some people will disagree with this statement). Also, we need more comprehensive studies that look at how patients respond to intervention strategies. There are too many poorly designed/executed studies simply because funding was very limited as, e.g., donations were the main source of funding; the results coming out of these studies are sometimes more confusing rather than helpful.
Heather Rocha	Infrastructure Needs Research
Anonymous	Research infrastructure needs
Jenna Moser	Infrastructure!
Anonymous	Use the SBIR funding mechanism to support new and innovative technologies to identify at risk populations using immunologic, not genetic screening. From the work of Judy van de Water, we know that more than 1/5 of cases of "autism" are the result of autoantibodies directed at the fetus. We need much more effort at identifying subpopulations so they can be treated properly. While every child is unique, it is clear that major subgroups exist.
Suzanne kollar, Parent	Infrastructure needs
Priscilla Arena	Organizations that" claim" to aide in research should be monitored more closely that the funds taken in go toward that cause. Ex Autism Speaks, 8-9% only goes toward research, the rest is administrative. As a parent of a child and an executive director for a legitimate non for profit it repulsed me.
Anonymous	Infrastructure needs
Melissa Farley, Full Access Brokerage	I've seen success with "internship" type programs in which employers work with support agencies to recruit people with specific skill sets. This arrangement works well for someone with ASD when employment providers understand how to carve out a specialized position in which the individual can focus on a target area of interest and excel in the workplace. In my experience, research at the university level uses data from students who are closer to the autism spectrum (though not diagnosed) than other students applying to earn credit through the human subjects pool. This is done in lieu of recruiting people from the community who have been diagnosed with ASD. The rationale is convenience and budget constraints. It would be beneficial for researchers to work directly with local autism communities to gather data.
nick	accurate reporting of vaccine injuries, make this public!!!!!!! independent research not corporate research
Elena Kelley, Mother	Infrastructure....more smaller housing for people on the spectrum so that they can participate in community life. So that they can have homes just like the rest of us. I believe that a lot of people on the spectrum benefit from manual labor, which can have a regularity and a structure to it and why so many benefit from things like weight lifting, moving boxes, etc. Anxiety is very common with autism and physical exercise and fresh air help with anxiety a lot. Some people are using farming, including urban farms, to help. Those could be used from grade school on into adult hood. You also get a sense of personal satisfaction for having done a good job, expelling energy, and having a product to show for it. Could even make money from it and not have to rely as much on the government for your support.
Marie Arnold	I feel that the private sector can be much more effective at providing better structure and care for those who are affected and who are moving into the adult population. The private sector has shown over and over, with the baby boomer population hitting retirement age, that assisted living facilities have grown, as an industry, to provide options for families. These are covered by long term healthcare policies, which many are now investing in. But, in general, these facilities should be given tax benefits and incentives so that they can be created and thereby exist for those who need them. They can be offered in a more affordable and desirable manner to these families
Ginger Taylor, Autism mom, Canary Party	The CDC is corrupt. It is patently absurd that they should be involved in any research on ASD. They are being sued for publishing fraudulent surveillence data, their autism researchers are under DOJ indictment for fraud, to suggest they should be involved in anything is the definition of insane. Step one in what should be done in research is to investigate, fire and likely indict those at the top who are committing research fraud, bring in a new head of CDC, replace the IACC with people who have actually made progress in improving the lives of those with ASD, and preventing it, and stop pretending that the course this committee is on is a valid one.
Anonymous	More easily accessible databases for research and treatment modalities.
Anonymous	Research infrastructure
Gene Bensinger	Basic scientific research grants must be made without the burden of ideological litmus tests promoted by some neurodiversity leaders in order to uncover biomarkers to improve the quality and timing of autism subgroup diagnoses. Research funding in all areas of hard science focused on autism must be aggressively advanced and not diverted to social science research proposals more appropriately funded out of existing DD Act funding streams dedicated to this area. Pharmacological research focused on behavioral and quality of life challenges should be increased. Technology research funding should prioritize collaborative large scale proposals and projects.
Tammy	More focusnon women and girls on the spectrum is needed. For everything from diagnosis to education to inclusion in studies.
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	? Continue to support broader inclusion of populations in studies
Anonymous	combination therapies needed, medication and behavioral. Need for more sophisticated analyses and methodologies to study treatments, and focus on components of treatments and not comprehensive packages. Need to move away from simple treatment versus community control studies.

Improve services infrastructure

Respondent	Response
Barbra Lippenga	It would be nice to have one place to go to in order to find help and services for you child and adult
Anonymous	the US is not prepared for whats coming imo. The system will be on major overload. Then waht , where do you put all these young adults that need lifetime assistance? Need to get families involved and come up with creative ideas for the future. 1 idea for example, how bout matching up families so they can buy a house togetther and let there young adults with special needs live together. hire 1 live in who will cook and clean and help out. just a thought.
Nan McVicker	(I have no idea what "surveillance" means in this context. I won't go there.) Infrastructure is in great need of strengthening. The "inspirational" story of the autistic person who is included - in sports (after the team is winning by an unbeatable margin), at a job (no pay, just the occasional feel-good news item), in housing (with a sympathetic sibling) - is not a substitution for real actions to create spaces in the community for people who need assists and/or accommodations to participate in community life.
Robin K. Blitz, MD, Phoenix Children's Hospital	the use of telehealth to provide medical care and interventions to children and families outside metropolitan areas.
Anonymous	Definitely "infrastructure needs", if by that you mean services that are needed but not available to those without huge personal resources. There needs to be more housing available, more insurance coverage, and more educated professionals who take insurance, more help to live as independently as possible as adults.
Pamela Glatter, Parent	things need to be but in place. Research has been done. Look to MA , they seem to have a handle on it. Why is MA the only state that has BCBA's in their classrooms?
Karen Cummings	I believe research in residential services
Patrick Johnson, American Academy of Pediatrics	In terms of infrastructure, the AAP recommends that the Plan details the urgent need for case managers, social workers, behavioral therapists, and physician providers in order to care for ASD patients. Developmental pediatricians continue to remain in short supply, despite the growing evidence that early ASD identification and intervention are the keys to successful outcomes. Increased reimbursements for all ASD providers (from pediatricians to social workers) would allow for a more manageable patient to provider ratio, as well as increase the number of providers nationally. Integrating ASD care coordination in family medicine, internal medicine, and pediatrics training programs is the first step towards better equipping future physicians. Finally, the AAP would have appreciated a section regarding the challenges facing immigrant children with ASD. Like all populations, immigrant children and adolescents are diagnosed routinely with ASD, and further infrastructure and guidelines need to be devoted to this subset of the population. Physicians may not encounter immigrant patients with ASD until they are well into adolescence, which requires an entirely different set of guidelines and interventions.
Anonymous	There should be a resource to identify whether schools are adhering to research validated strategies for educating children with autism, and there should be trained coaches that can mentor younger teachers. Would like to see a centralized website with model programs and information featured, and federal funding to train educators and providers in underserved areas. There is too much teacher blaming and not enough teacher coaching. Funding special education with highly qualified teachers and support teachers is critical.
Kristy Anderson, AJ Drexel Autism Institute	Research is needed to understand the role that federal safety net programs play in promoting financial stability and independence across the life course. Nearly 1 out of every 3 Americans with a disability lives in poverty. Like many people with disabilities, adults on the autism spectrum face several economic challenges such as low labor market participation, poor wages and high medical costs. Much of the research about adult services have focused on programs that promote employment for people with disabilities, such as Vocational Rehabilitation and Special Education programs. However, research about public safety net programs - like Supplemental Security Income (SSI), food stamps and public housing ' is severely lacking. This is a critical gap in the research considering that these programs are a vital lifeline for thousands of people who could not otherwise afford basic necessities like food and rent. In 2010, over 151,000 people with autism received SSI. To put this number in context ' in that same year, special education services covered 420,000 children and adolescents on the autism spectrum and Vocational Rehabilitation closed 9,020 cases. Despite its importance, we have virtually no understanding of how SSI impacts the daily lives of its beneficiaries with autism. Understanding how federal safety net programs ' and SSI in particular - impacts the lives of people with autism should be a top priority in future research.
M. Hail	research workforce development, strengthening collaboration, research infrastructure needs

Increase the dissemination of research, and the translation of research into practice

Respondent	Response
VaxXed, Autism Media Channel	The most important topic to question 7 is dissemination of research information, specifically that a falsified document has been used for 12 years (since 2004) to corroborate the claim that vaccines do not cause autism. The retraction of this paper needs to be as widely publicized as the initial publishing of this paper: “Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta” (DeStefano F, Bhasin TK, Thompson WW, Yeargin-Allsopp M, Boyle C. Pediatrics. 2004 Feb;113(2):259-66). I suggest that the IACC asks the American Academy of Pediatrics (AAP) to retract their 2004 article and widely disseminate the information with regard to risk based on time of MMR injection for 1) the population group identified as black, and 2) the group identified as "isolated autism". Then the IOM should ask a body more responsible and with greater transparency than the CDC to perform the unbiased control study of vaccinated versus unvaccinated for longterm morbidity and co-morbidity rates. Those results should be open to the public ad widely disseminated.
Connie Zienkewicz, Families Together, Inc.	Increased funding for Parent Training and Information Centers, research into safety, dissemination of the latest research to families and the medical professionals who serve them.
Donnell Probst	Many media literacy organizations are investigating the effects of media messages on individuals ranging from babies to adults. Some new research is emerging in the field determining how to best educate people with disabilities about the media messages they consume, but the research is limited in scope. Due to the unique learning, communication, and language differences of individuals with ASDs, it would be beneficial to extend the expertise of the ASD community to the field of media literacy research.
Ana Dueñas, Michigan State University	Dissemination of research
Dwight Zahringer	Easy, understandable access and dissemination of research information
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	Dissemination of research information among professionals, authorities and stakeholders
Jason C. Travers, University of Kansas Department of Special Education	A main concern relates to the increased proliferation of fad, pseudoscientific, and controversial interventions and treatments for individuals with autism. For example, well-regarded leaders in the scientific community (e.g., Dr. Paul Lipkin) have suggested that facilitated communication may be an effective method for individuals with severe forms of autism. Perhaps a better known example relates to anti-vaccination fears. Such confusion among has direct harm on individuals with autism and their families, and the broader scientific community tends to ignore these very significant issues. Scientists tend to focus attention on effective methods, perhaps do to fears that attention to ineffective methods may lend undue legitimacy. This logic was sound prior to the advent of the Internet, but appears obsolete. Media has changed dramatically and scientists no longer have control over the information that reaches consumers. Rather than continuing to ignore clearly bogus methods, I encourage the IACC to develop a means of supporting consumers in selecting practices and methods that are evidence-based and avoiding those that been thoroughly refuted. This very well may be a topic for research supported by the IACC (e.g., developing tools/instruments for consumers to use to evaluate claims of treatment efficacy).
Tonya Cummings, parent	I'd like to see the FDA fast track any research that looks promising and get treatments to the public. Start by giving some practical help to the masses and then figure what is causing ASD. Please help the existing people first.
Janice Rushen, parent	I think parents need to know more in simple terms. They need information that will help them understand what is happening and how the child thinks. If the parents can learn how the child is functioning it will help them work with their child. Teachers and staff members of schools needs to learn what is going on with the child.
Karen Delaney	Disseminating information - I feel like the "specialists" that I take my son to are still utilizing information that they've relied on for years and there is very little "new" information or suggestions to be had
Krishna Murphy	Dissemination of research information sounds great!
Maggie Halliday	The only info I get is through emails from autism speaks otherwise there is no dissemination of information. There is nobody monitoring these children and their progress. You can't go by Iep goals and school evals . The goals are usually basic and pretty useless and the teachers are taught to all ways make very thing sound positive. There are very few employment prospects.Stacking shelves or gathering carts a tShoprite is the only job prospect in my area. They need training and support as young adults and assisted employment in jobs that are rewarding. Most of these affected people could work helping other affected children. They need jobs that help them to function in society not jobs that isolate them further
Oliver Wendt, Purdue University	- dissemination of research information to practitioners and families
Paula Webster, West Virginia University	There is a lot of great research being conducted for a multitude of aspects of autism and much of it is directly translational; however, there remains a huge gap between research results and changes to screening, diagnosis, or interventions. Research that starts with the inclusion of families, interventionists, and clinicians has the best chance of bridging this gap. In addition, it would be nice to see requirements for the identification of translation in research funding. Not all research will be directly translatable, but having a process in place to directly identify which is would be an improvement.
Dan, Grandfathers	Disparities in transparency of certain studies and associated data
Suzannah Iadarola, University of Rochester Medical Center	I think there has been a disconnect between what research has identified as evidence-based and what is communicated to consumers. One potential way to address this might be to stipulate that newly funded research projects include a "dissemination of results" section that outlines how the findings from the research will be communicated back to the study participants.
Anonymous	Dissemination of research information.
allison velarde	The Google iCloud is great! It needs to be expanded to cover more research topics such as immune issues and neurological findings.
Amanda C Nicolson, California Autism Center	dissemination of research information - training for pediatricians, educators, parents
Anonymous	Dissemination of research information.
Anonymous	Reading is a great source of knowledge and understanding of this condition. There are hundreds of books from which to get clear and easy information of this condition.
Anonymous	Disseminiation of research information
Debra Schafer, Education Navigation, LLC	For parents today, the internet provides a plethora of information about the biology of ASD. The challenge with this, however, is that many parents find themselves on "information overload," which exacerbates their concerns and frustrations.
Anonymous	I understand more what is going on, I see the benefit when addressing different issues. However, having no medical degree it is very slow moving, hard to understand and takes a tremendous amount of time to research. Addressing some simple issues could bring some much needed relief to these individuals.
Anonymous	Autistic children and adults need continuing research in understanding the many causes of autism. It must be disseminated throughout communities, and educational systems from elementary through high school and college. Trade opportunities need to included. Right now, in my community, a bakery named "Puzzles" opened and hires only autistic individuals. I wish there were more similar opportunities available.
Gordon Bourland, Ph.D., BCBA-D	As noted previously, much work and resources are needed to increase public awareness and support of evidence-based interventions and services for persons diagnosed with ASD as well as acknowledgement by governmental entities and insurance companies of the existing evidence supporting services and interventions for persons diagnosed with ASD, including funding at a reasonable, effective the provision of those services and interventions.
Holly	What research. My son is 15, and in 15 years nothing new has happened. We are using off brand medications, because only 1 is approved for ASD, we still rely on ABA although the West coast abandoned that a long time ago, we are still arguing if shots caused it, we still have less funding for ASD than for D/A services, to get into rehab it is 24 hours, to get into a service for a ASD child it is 2 to 8 years. To get housing for a d/a it is 20 days, to get housing for ASD it is 15 years. What research, what break through. These kids are dx followed for a couple years, and then they disappear. You have no idea what is happening with the teen population, the young adult population. Statistics are coming from the providers who aren't going to admit that their treatments aren't work, because that is their bread and butter. When a parent complains they are labeled non-compliant or in denial of their child's disability.
Jenn Carerros, Mom of a child with autism	dissemination of research info.
Jennifer Warren	Research has led to many wonderful changes in the autism field. My daughter is now 24 years old so we have certainly seen changes. However, it seems to take so long for research to reach the people who are in charge of the purse strings. I would hope that your agency would be instrumental in this piece of our puzzle (Realizing that this is a tiresome task with ever-changing targets). Please keep up the good work and remember sweethearts like my dear Rachel. She brings joy to many lives.
kathleen Madigan, NBCT ECGEN 2nd grade teacher, grandmother of an autistic boy	Reach out to family doctors and over updates on research through regional trainings.
Anonymous	Dissemination of research is needed especially high quality research findings on risk factors for autism, technological means of communication for low functioning, non-verbal autistics, and employment opportunities at home including agriculture/gardening, weaving, pottery-making, painting etc.
Anonymous	It would be great to either have better information about scientific research on these therapies/tools or to actually have the scientific research done.
Minerva Adame	Main thing is to get the health information to families that are of higher risk or already families with an individual(s) with Autism. Share knowledge and information to more people.
Brynda, Parent of an autistic child	Better communication to the people. Better information passing down.
Anonymous	so much research is not explained well to parents and stake holders so the impact on practice and interventions is not always happening.
Christine Reel Brander	Clinicians need easy access to evidence-based practice guidelines
Megan E Sova-Tower	Making research understandable and accessible to the public.
Nancy Roberts	Research Education
Anonymous	There needs to be a free, open online resource where information gleaned from valid and reliable genetic and biological research is set forth in an organized, indexed manner. It probably should be organized around discrete genetic data. Each discrete genetic unit should be listed with its associated biological and behavioral markers.
Kristi Stockdale, Parent	Dissemination of research is a great need currently. Outside of academic research institutions, there is no real way for autism best-practices to be communicated to parents and providers.
Anonymous	Limited knowledge to comment, but I'd just encourage those involved with research to communicate their research plans and findings, so there is not unnecessary duplication or overlap of effort.
Anonymous	Many in the community have participated in clinical trials designed to identify possible biomarkers. The results are not generally shared with participants. Perhaps we can be provided a report as to where things stand with respect to research here. Then we might be able to ask better questions. As far as I'm concerned, the gap is in clear and effective communication with families as to what is known, assumed, being considered and what next steps are being taken. And not just as to prevention but also what is being contemplated for those who have the disorder.
Simon Huebner	Try to look at ways to reach underserved populations.
Anonymous	All the current research is loaded with novels of technical jargon. Can't there be a layman type of book available to people like myself who don't have time to read 2000 pages of extremely technical BS, who has to work two to three jobs to support the cost of living for a single parent of an autistic. I'm exhausted. I'm getting older. And I'm getting sick of ignorant idiots who don't understand why I do the things I have to do to support my adult child with autism. After all, I already know what my son suffers, I just need to know where to go to get the help and support without all the red tape BS.
Donna Gruber	I would like it if there would be a one stop website giving all the information that is kept up to date. Twenty three years ago when I had my son and started all the researching, it was so difficult to put everything together into a big picture. The pediatrician missed the common hypotonia associated wiht autism spectrum disorder and my son could have had interventions that helped his hips, knees and legs but didn't because of lack of knowledge.
Anonymous	Research is always being done - we just need to look at it closer and really take what it says to heart. There are a ton of people with ASDs and we need to look at the research to better help them and us so they can be a better more independent individual.
Heather Winterbottom	Educational ads by reputable agencies, including websites for further information, educating people about the neurologic conditions associated with autism.
Anonymous	1. Utilize and expand "medical home" initiatives to include Autism Navigator professional. 2. Develop one-stop collaborative historical collection of an individual's medical, educational, vocational, housing, CAM intervention, and behavioral supports to streamline service delivery. 3. Research a variety of models of housing, supportive employment, care-support, and monitoring to determine best outcomes for life participation and happiness. Include selection of urban, suburban, and rural models. 4. Collaborate with not-for-profit businesses to develop products and brands for marketing to socially conscious consumers. 5. Utilize social media to disseminate information. Provide free access to research articles. Summarize for social media dissemination. 6. Focus on access to continued communication interventions for low/non-verbal individuals to support employment opportunities. 7. Provide training to workforce and supervisors on communicating with employee using alternative/augmentative communication strategies. 8. Research systems-model communication interventions for adults. (Let me know if you want to do this one. I'd love to participate!)
Toni Poh, Educator	Implementation of research outcomes.
Ray	Also, what information there is regarding co-morbid disorders and disabilities are not widely shared, so many people do not have access to the information which could be crucial for diagnosing other problems.
Anonymous	More tracking of outcomes and research on interventions across the lifespan. I think making research accessible and useful to people on the spectrum and their parents is also important.
Anonymous	Research and impact. How to share research to impact on daily practice. Schools share on line. Links across world effective practice. Utilising AET checklist guidance to provide consistent support across services
Anonymous	dissemination of research information
Anonymous	Dissemination of information is important. The best reaserch is irrelevant if no one knows about the results.
Glowyn Roughton, Emg consulting	Dissemination
Cheryl	Please work to disseminate information in reliable, easy to implement steps.
Margaret	Dissemination of research information
MRJ	While I understand this is focused on autism spectrum there are other diagnoses like ADHD that don't seem to get as much attention, yet, in some cases the treatments can also benefit those with similar symptoms. Better evidence to support the need for services (i.e. ABA therapy) to address issues whether a child is or is not on the spectrum but has spectrum-like issue would be helpful.
Daphane Voltz, Advocate	more research into autism across the life span, not just young children with the focus on diagnosis. Better training and information networking for emergency response officials.
Beth Malow, Vanderbilt University Medical Center	being able to get evidence-based information out to practitioners and empowering families to share information with their practitioners is critical
Anonymous	Where are the obstacles/bottlenecks/gatekeepers that impact a direct service going to the individual
Kerry Lane, Palm Beach Autism Institute	Research should focus on the aforementioned topics as Preventive Methods.
Michele Caramenico, parent	Would be helpful if pediatricians would be informed of research studies validating integrative interventions. I have to travel extensively and pay significant out-of-pocket expenses due to the ignorant, misinformed local doctors/
Anonymous	Information not well disseminated within the greater public and institutions (especially the judicial system).
Marcia Gray	Getting information out to Doctors about what this looks like (and how it looks different in girls than in boys) should continue to be a big push.
Stephanie Dahl, parent (2 children w/ ASD)	Research papers published about the advances in this area should be made public and not restricted (as they are now) to academic or medical journals that require an expensive access.
Anonymous	All federally funded research should be published open access.
Wendy Fournier, National Autism Association	There is an enormous amount of research that needs to be collectively organized and made easily accessible and highly visible to both physicians and caregivers. We need a clear guide on evidence-based treatment options. Parents are forced to seek out research studies on their own. IACC should be doing this for the community.
Brenda Messex, Parent & Personal Service Worker	Parents never KNOW about the research. It is not made public- we have to search for it
Anonymous	Strengthing collaboration between autistic people and the research. Autistics have a wealth of information about themselves that researchers have ignored. Involving actually autistic adult people in the research and data collection would be life changing for autistic kids and their neurotypical family members.
deborah weiss	dissemination and strngthening
Bronte Abraham, Parent	Workforce development and disseminiation of best practices/successful models for inclusive employment, microenterprise etc. is important. Surviellance for these types of programs vs. incidence rates -- is more important to me these days.
Anonymous	Dissemination of research information with strengthening collaboration. Many times you read about new information about autism but then no follow up. This has been going on for a very long time. "Someday in the future" a repeated phrase but the future is now. We need to shut down the Quacks and Snake oil salesmen who take advantage of vulnerable parents and perhaps harming the children.
Piper Davis	I would think that research should be concentrated on workforce development and on educating the public about ASD.
Anonymous	Dissemination and collaboration are vital to a meaningful outcome for this population. Average-above average intelligence is squandered in sensory-numbing environments. Inclusion in chaos is a recipe for failure.
Stephanie Mendelson, SASI (Suffolk Aspergers/Autism Support & Information)	Dissemination and breaking down of research info that is out there to determine it's usefulness to asd population
Sylvia Diehl, University of South Florida (Retired)	It is very difficult to get educational research dollars. When have to have more functional and applied research. Schools are less likely to be involved because of testing constraints. Research has to be disseminated in a way that CLEARLY and repeatedly lets the public know what are appropriate ways to use the information. It is important that results are disseminated in ways that everyone understand and appropriate applications are delineated. We need APPLIED research on educational practices that transfer to real life application.
Anonymous	Evidence based research results need to be disseminated to the people who benefit most from the information, that is the parents of children and teens and the adults diagnosed with ASD. This EBR needs to be written/presented in such a way that everyday people can easily read it and understand it and, if they have any questions about the information, contact information is available to easily reach the researchers or research institution.
Liza Krassner, Parent and UC Irvine Public Health employee	Disseminating results and finding and how it affects public health and policy in treatment and information dissemination should at some point be part of the discussion.
Sarah, Heritage Christian Services	Research and real numbers need to be available.

Need greater development of the research workforce

Respondent	Response
stella avcisoy, ARC of Seneca Cayuga	I believe that research workforce development should be at the top of the list! I live in Seneca County NY and workshops (that are working) are in danger of being closed. This is a huge problem (terrible), we need more jobs for ASD citizens not less!
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	research workforce development
Paula Roegge	Workforce development.
Carolyn Hyman	Workforce development.
Eric Common, University of Kansas	research workforce development
Anonymous	Workforce development
Anonymous	Research for workforce development as well as funding.
Wendy Wolfe-Womack	Workforce development
Anonymous	Workforce development
Roseann Schaaf	research workforce development
Anonymous	research workforce development
AM	workforce development
Danny Raede, Asperger Experts	Research workforce development
Debra Balke, Child Neurology of SLO/Central Coast Autism Spectrum Center	Workforce development is a huge need
Anonymous	workforce development
Patricia Harkins, Harkins and Associates	Workforce development
Julia Biagiarelli, Easterseals	research workforce development
Jenny Nash	workforce development
Leslie Zevnik	research workforce development
Anonymous	workforce development!
Anonymous	Research workforce development
Anonymous	Research workforce development
Patty Hooper	workforce development
Anonymous	Research workforce development.
Anonymous	Research work force development
Dr. Cheryl Mendelsohn, private practice and Cause Cafe	Many parents do not understand the issues regarding diagnosis and co-morbid disorders. The neuroscience is just becoming known and the information needs to be available to lay people who want to understand the possibility of having a child on the spectrum. I believer more information should be made available to the public in terms they can understand.and without being sensationalized.
Anonymous	Research workforce development. Please see the need for a continuum of services for all people with ASD. Some will be able to work full time, some part time, but others not at all. It is imperative to recognize there are adults with ASD who will never be able to work independently or have the ability to work at all. If we do not open our eyes to their needs, we will never provide a place in this world for these wonderful people. I speak from my heart. Please acknowledge the 2% who need a programming that supports their needs as well.
Melissa Poole, Community Services of Stark County	Workforce development is the biggest need because if they don't qualify for DD or get SSI then how are the going to support themselves other than welfare or their parents?
J. H., parent	1. Research workforce development. We need far more effective providers to deliver the services needed. 2. strengthening collaboration. Why re-invent the wheel over and over when we can synergize for better efficiency? Providers can become territorial and this hurts clients. 3. dissemination of research information, PARTICULARLY regarding behavioral interventions and exposure of pseudo-science.
Lucy Beadnell	Workforce development research and incentives Public information campaign on working/living/learning with people with ASD
Jessica Philips, Commonwealth Autism	research and policy implications re:Workforce development. Incentivizing businesses to employ people with autism. When employed, people with autism have more resources to lead a self-determined life. They can contribute to their communities.
Anonymous, parent	WOrkforce development is critical. Working with individuals with autism can provide meaningful work for others also especially if ADEQUATE compensation is provided. Also make technology more readily available and affordable for individuals with ASD and their families/caregivers. Encourage providers to provide as part of tax incentive plans. Also I feel that groups that support ASD do not work together often enough. For parents it can be like ascavenger hunt obtaining meaningful useful information.
Anonymous	Workforce development
Anonymous	Workforce development, identification of appropriate and supportive work environments, and matching persons with ASD with jobs where they will most likely find vocational success.
Anonymous	Workforce development
Jessica	Research workforce development
Rosemary Heath, Assoc. for Metro-Area Autistic Children (Board member)	Researching workforce development is a fundamental priority, as is implementing the information developed. Many autistic persons can participate to a significant degree in the workplace, given some supports. The number of autistic adults who have received at least a high school education is high enough that folding them into the workforce is desirable. Meaningful work opportunities need to be made available, along with training for supervisors to make the best use of the various talents autistic persons have.
Mary Parnell, Parent	research work force development, and social supports needed to help individuals have happy and fulfilled lives
Liza Krassner, Parent and UC Irvine Public Health employee	Collaboration and workforce development.
Marc Freeman	ASD surveillance research, research workforce development and strengthening collaboration should be priorities, especially as they apply to adults. But more than research, we need actual policies that meet the needs of the adults with ASD so they are not falling through the gaps.
M. Hail	research workforce development, strengthening collaboration, research infrastructure needs
Dr. Tanya Skalecki, The Arc Mesa County	Measures need to be put in place to help ensure that the research number of ASD are accurate. This is critical for appropriate interventions, supports, services and funding. More public awareness will bring about a stronger community in collaboration of services and job development to businesses that benefit from the autistic mind. Too many individual with ASD are being placed under different educational eligibility categories and under co-occurring mental health determinations/diagnoses. Individual with ASD need to become self-advocates and by understanding their disability, they can successfully advocate for themselves, and help others understand their actions and needs.
Anonymous	Workforce development
Aimee Vitug-Hom	Research of workforce development that can be access and utilized by educators.
Anonymous	research workforce development
Bronte Abraham, Parent	Workforce development and disseminiation of best practices/successful models for inclusive employment, microenterprise etc. is important. Surviellance for these types of programs vs. incidence rates -- is more important to me these days.
Susan Walton, Outdoor Autism & Special Issues School	Workforce development
Angela Hiller	Research in workforce development.
Anonymous	Workforce development is key. The unemployment rate of autistic individuals is a crisis in our country.
amber dorko stopper, ninjagoat nutritionals/fatCoffee	workforce development
Piper Davis	I would think that research should be concentrated on workforce development and on educating the public about ASD.
Anonymous	Research workforce development
Stacey Phelps Anderson , Parent of three teens w/ diagnoses of either Autism or Aspergers	Workplace research information is so important. Many of these community members are able to work with the proper job and supports to fit heir needs, however their self esteem As well as interviewing skills really need help. Technical schools and organizations such as MENSA should be utilized to gather community and job support to creat jobs for this community so that they can be as productive as possible.

Current priorities are appropriate/important

Respondent	Response
Alexandra Tien, MD	All of the above. These kids need everything reworked because the services are either not their or they are horribly implemented.
Anonymous	All
Carla Meads	Every kind of research possible needs to happen.
Delores Goneau	Everything above
Anonymous	All very important.
Jennifer Furlow, Autism Mom-Warrior	Everything listed in question 7 needs major improvement.
Michael Ridgway	In this topics all these needs need to happen at the time when needed.
Renee Portnell	any research would be helpful including asking families, talk to congress, legislatures etc.
, Parent	All the above are critically important. Why can't we have a "man on the moon" effort to develop medical / genetic treatments for autism? The benefits to society would be enormous. What are we going to do if in 20 years we have 1 in 20 children with autism?
Susan Morales	I believe all of those listed for Question 7 are exactly what is needed.
Kimberly Matkin	There should be more research done on all angles for autism.
david may, KidstokidsII A NJ Non Profit Corporation	all of the above- but from a practical standpoint we need to have a goal of making these kids are productive in society as possible. See my developmental models and school to work ideas already shared. joint research and sharing internationally is essential. I am happy to share our work as part of this decimation and collaboration.
a	research workforce development actually, all of these are important
Tammy	Again, all of these are quality of life issues, and they all fit together.
Anonymous	I think if screening/diagnosis occurs early and educational providers are educated and given the resources to support families in developing life skills and quality of life and integration for their children with autism, it will empower and promote preparedness for the lifespan. I think the science behind it still necessitates research (especially where health and co-occurring conditions are concerned) but the biology of why and what does not directly impact or even get disseminated in an understandable or consistent manner to people supporting people with autism to live a healthy, less stressful life.
Chitra Raman, Parent	All of the above are important. To those I would add research on what motivates caregivers in this most challenging of fields to provide the best support across the lifespan of individuals on the spectrum.
John Rodakis, N of One: Autism Research Foundation	I would like to see a greater distinction between mildly and those severely affected who are unlikely to be able to lead an independent life. With an emphasis for bx support and school & work modifications for the former and intensive medical research for the latter.
Anonymous	I think more research needs to be done. Period.
Jennifer Kiney	Yes, more of this please. Without making autistics sound dangerous or a burden to society.
Anonymous	All of the above
Mary Nally	All are important
Jen Meyers	so I think research into effective treatments is vital for those severely affected by ASD.

Prioritize services and interventions rather than research

Respondent	Response
Jan Ornelas, Brian's Hale, LLC	I agree research is needed but research is prioritized over the care of those currently dealing with autism. It's great to find the etiology of autism but there are limited to no services for those who are currently autistic.
Carla Charter, Disability advocate	We do not need research. In many cases autism is not a disability it is a difference. What we need is for the government to realize that day to day autism requires supports that are flexible, geared to the individual and easily accessible. They also need to be aware that in todays economy it takes two incomes to raise a family. And when a family has to survive on one income, through no fault of their own, their needs to be assistance!
Anonymous	Enough with the research! Get us some help with services NOW! this would include policies for helping adults with autism.
John Cullison	Break out your Maslow's Hierarchy of Needs and start walking it from bottom to top. Just meeting the lowest two tiers would be phenomenal. You really need to start thinking in terms of companionship instead of surveillance.
Jennifer St. Cyr, WithinReach	Less research, more practice. Adults need services, not "cures".
Anonymous	research that is focused on measurable outcomes that actually IMPROVE quality of life for the entire family impacted
bob horn, [Minor/Dependent Name Redacted]	all you do is research,get your boots on the ground
sharon, 501-c-3 Momma	Strentthnen tangible services not rheoric not buzz words not feel good words SERVICES DIRECT to parents and children please please think visit families who are not afraid of your agencies please for all that is good in our children you are destroying day by day with no services and waiting lists get real or get out of my way and i will charge the charge Walk the Walk not Talk the Talk to even answer this survey just proves were you think the concerns lie easy services
Mary Leathers	All areas of research are lacking except whether it is increasing or decreasing and whether vaccines are involved. I would love to see a shift of research emphasis to effective treatments instead of incidence, prevalence etc
Shelley Tzzorfas	Research generally takes many years. I believe that the children and adults cannot wait for research as they need places to go yesterday.
Jenni Sherriff	Survey the neurotypical community. Educate them on how to properly treat autistics. Find ways to ensure that employers properly treat people with disabilities. Because the occurrences where kids get really cool jobs where their disabilities are valued and embraced are the exception, not the rule. Quit researching autism. Quit surveying epidemiology. Start researching the way the community treats and reacts to autistics. Start figuring out patterns in the abuse we suffer from the non-disabled people in society and figuring out ways to keep that from happening.
Wil Beaudoin	More research needs to be focused on assessing and improving services for autistic people. We need more of a balance between a study of the causes of autism and improving the lives of those autistic people who are alive.
Artea Lombardi, Parent of Eden Autism Services	Transportation funding, housing availability and cost of food are challenges. Research is important and parents should be informed and educated, but more importantly attending to the adults who are living today is equally important because they need services now. The research is important for future and I feel that is necessary, but we need to take care of those individuals who need services today NOW and in their senior years.
Jim Wurster, New Avenue Foundation	We don't need research, we need funding to implement solutions.
Anonymous	Do not spend another dime on research... Use the money to provide a community and resources for those who cannot live in our "typical world"
Jennifer Keller	I am a Behavior Analyst as well as the sister of a 55 year old man with Autism . I read research articles almost every day. . But we have a lot of research , we know a lot , we have lists of evidence based practices - and we're not using the information we already have to build choices and supports. Read work done at VCU 30 years ago - that information keeps being presented as new at conferences . Kind of like clothing fashion cycles . We need to do what we already know how to do. We need to make sure that the people who work day to day with individuals with ASD have the knowledge needed AND that they are able to support their families on what they make. Families need support whether or not they have the waiver.
Alexander Frazier, Director, Autistic Reality	The most important priority is to understand that autism is not a problem, but a form of biological diversity. Organizations that are founded on the principle that autistic individuals are incompetent or lesser human beings need to be done away with, and have their public powers severely curtailed or even revoked. This includes organizations such as Autism Speaks. Similarly, other organizations such as the Autistic Self Advocacy Network (ASAN) which work on a principle of being incredibly narrow-minded and bullying anyone who isn't equally narrow-minded have absolutely no place in the advocacy world. Autistic individuals do not meet a cookie-cutter mold, and should not have to conform to the unreasonable wishes of anyone, whether they be outside or within the disabled community. Workforce development must be researched, as must universal design with autistic individuals in mind. Research information must be available to the public. Asking the public to pay for research information which may help them is, in the eyes of Autistic Reality, completely unreasonable. Autistic Reality also calls for the strengthening of inter-disability networks, and the strengthening of relationships between non-disability groups and disability related groups. Finally, Autistic Reality tends to frown on the electronic surveillance of autistic individuals. If there is surveillance of autistic individuals. it should be completely voluntary.
Kelly Valenta	Please LISTEN to the parents. No more eye contact studies. No more early detection studies. When there's not meaningful and effectual treatment and help, money is better spent elsewhere.
Nicole	Treatment to help the symptoms of autism.. that's it
Marc Freeman	ASD surveillance research, research workforce development and strengthening collaboration should be priorities, especially as they apply to adults. But more than research, we need actual policies that meet the needs of the adults with ASD so they are not falling through the gaps.
Yvette Cunningham	More Real Resources, Less Web Pages That Go To Nowhere, or ask for donations. Tell me were to go for help, not what is being studied or what everyone thinks will fix it. Tell me what's working. I have worked hands on with my son every night of my last 19yrs. He couldn't do his ABC's untill 4th grade. But we did them every night. That's what these kids need. Constant therapy. Not 10 hrs of tss and 10 hrs of mobile therapy, do what works and stick to it untill they get it, for those that are able.
Cheryl Miller, Parent and teacher	I do not think we need more research in any of these areas. i think we need implementation of the things we know that work and then record the data. Stop letting the schools dictate what should happen.
Sharon Howell	again vaccine safety research along with environmental toxins everything else continues to be a waste of time and money. So many parents I know are writing you and begging you to stop the useless research. Find the real cause and meanwhile figure out a way to serve the millions of children who need help - most life long care.
Marge Blanc, Communication Development Center, Madison, WI	No more money spent on 'central tendency' research. Collaboration; social work services to families.
Megan	Move away from the search for a cause and cure. Work toward management of what is currently happening.
Diane Frillman	The MOST important research priority, is to stop spending millions on research and spend that money helping families. If I read one more peer review paper that ends with the sentence, "More research is required." I will scream. Take what you have already learned, what you know will work/help and APPLY IT!!. I have two children with Autism and I am telling you there is a window of opportunity between birth and the first 5 years for the most progress to be made for these children. My children missed it because the scientific community could not agree whether behavior modification was the way to go or biomedical. Guess what? you need both!! Use everything you have at your disposal to help the children and parents of Autism and quit worrying about doing more and more research that is inconclusive, why, because it is not helping the children and parents Now, and Now is more important than 10 years from now. Parents are willing to try anything for their children to have a better life and who is the medical/scientific community think they are depriving their children and family from leading a more fulfilling life? In other words, parents and family members do NOT need the scientific community to tell them whether or not a treatment is working, trust me we know!

Multiple Themes Addressed

Respondent	Response
Dena Gassner, Arc US/ ASA	Workforce development. Collaboration with autistics Themes Addressed: Need greater development of the research workforce; Research should include the voices and participation of individuals with autism and their families
Christy Chapman	Workforce development and strengthening collaboration between parents, schools, service providers, and career paths are crucial to supporting these individuals. Themes Addressed: Increase collaboration and coordination among services providers; Need greater development of the research workforce
Vince	We need to strengthen the relationship between parents and researchers. It starts by listening. Dissemination of research information seems lacking - I don't know how many people understand the CDC's 1-in-68 numbers is for kids born 8 years ago. I think there's also a feeling that the only research being disseminated is that which confirms the opinions of the establishment. If it's convenient to the case being made (whatever that may be), then it gets out. If it's not, then nobody hears about it. Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Research should include the voices and participation of individuals with autism and their families
Anonymous	Dissemination of research information, and strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Julie Long, parent of child on spectrum	Higher priorities should be: research workforce development, dissemination of research information, and strengthening collaboration. Secondary priorities should be: research infrastructure needs, ASD surveillance research, Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Kimberly Richards, Parent caregiver	Need more collaboration and access to research and findings. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Katrina Ostmeyer-Kountzman, Integrated Behavioral Technologies, Inc.	1. Workforce development in rural areas. 2. Dissemination of evidence-based treatment options and informing the public about the difference between evidence-based, evidence-informed, and non-evidence based. 3. Strengthening collaboration between different community systems. Themes Addressed: Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice
K Wentrack	dissemination of research information, and strengthening collaboration. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Roger Kulp	Dissemination of research information, and strengthening collaboration. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
brandon miller, autistic adult	Research infrastructure needs, research workforce development, dissemination of research information, strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies
Patty Jo, School System, Ga.	Etiology remains to me the primary need for research. In addition, programming for adults on the spectrum is Paramont. Research into what is most effective would be most beneficial. I see a gap as lack of informing the public at large what areas are being looked at. And other words, those of us in the field as well as parents and laypeople do not hear anything about what research is going down. It would be helpful to know what direction researchers are taking. Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Prioritize services and interventions rather than research
Sally	The most important research priority to me would be in improving the ability of families to participate in research. Depending on a study families may not be adequately compensated, we've done research studies that actually costs us to participate and at times when participating there is a good deal of cost that participants are responsible to cover and they are not quickly reimbursed. The FDA needs to change when it comes to moving treatments through approval especially when the treatment is based on a med that has been available since 1920, with a very good track record that has been tweaked a little. My child was diagnosed with autism but was also given a fragile X diagnosis. We participated in a clinical trial for STX209 which was very successful for my child and due to lack of funding by a private company it was taken away. It was truly a med that created vast improvement, a med based on baclofen, safer and better than many of the meds approved by the FDA, such a Risperdal or Abilify. Free access to research is critical, which is provided by PubMed central. Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Need research infrastructure, i.e. databases, research and clinical trial policies; Research should include the voices and participation of individuals with autism and their families
Becca Lory	Dissemination of research information and strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Anonymous	Medical schools must have autism as part of training for doctors. This would seem to fall under the dissemination of research information, strengthening collaboration, and ASD surveillance research. Themes Addressed: Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
Michelle Wolfson	Research workforce development Strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Teri Doolittle, PA-C, MHP, DHSc	Interoperable systems between state and Federal agencies; streamlining eligibility determination processes; aligning data collection and data sharing between provider/funding agencies and Federally funded research on genetics, co-occurring conditions, outcomes, etc. There is so much waste, data loss, duplication, delay,misaligned eligibility determination processes. The eligibility, evaluations, and data should follow the person, not have to be recreated every time a person moves or starts a new program. Information sharing in a secure system of data/evaluation sharing system would prevent data loss, waste, duplication, and delays. New methods of big data analysis should be used to find patterns of specific disabilities and co-occurring conditions, and link that back to the genetic and epigenetic analysis. Themes Addressed: Increase collaboration and coordination among services providers; Increase collaboration and coordination of research including interdisciplinary research; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	Research efforts should be coordinated among various groups and shared in a data base with worldwide access. Clinical trials should be extended to include adults as well as children and FDA needs to Fast Track promising medications for the general autism population.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need research infrastructure, i.e. databases, research and clinical trial policies; Research should include the voices and participation of individuals with autism and their families
Anonymous	1 workforce development 2 infrastructure needs 3 ASD surveillance 4 strengthen collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	Strenghtening of collaboration in my opinion is crucial. All the topics are important, but there must be funding available to support these effortsThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Current priorities are appropriate/important (research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration)
Anonymous	research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies
Cory Gilden, parent	More research networks should be developed. There are local/regional databases now that parents can sign up to belong to (for example, the Center for Autism Research out of U. Penn has a database), but they are not widely advertised. If you want to do research, you have to reach families that can serve as participants and you have to provide funding.Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Research should include the voices and participation of individuals with autism and their families
William Craig	Currently, I know of no research being done for infrastructure needs or ASD surveillance research. Workforce development would not apply to my daughter because she falls on the severe side of ASD. It would be wonderful to collaborate with other parents that have children like mine, that need extra attention.Themes Addressed: Improve services infrastructure; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
Anonymous	1. Research workforce development 2. Strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Anonymous	Strengthening collaboration with autistic adults as partners in research--not as subjects but as co-researchers--is paramount. Strengthening collaboration between scientific community and people on the autism spectrum. The only surveillance autism surveys should take into account the gender identity that the person prefers and things like race, ethnicity, age at diagnosis, and sexual orientation, and survey adults to see how many adults have autism spectrum disorders, not just kids in schools.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Research should include the voices and participation of individuals with autism and their families
Elizabeth O. Morejon, AOTA	There should be an emphasis on strengthening collaboration across disciplines with an emphasis on workforce development.Themes Addressed: Increase collaboration and coordination among services providers; Need greater development of the research workforce
Grace Gengoux, Stanford University	Research infrastructure, support for early career investigators, dissemination using technologyThemes Addressed: Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies
Maranda, Houston Autism Resources & Support (HARS)	ASD surveilance and strengthening collaboration. We need more understanding on specific numbers and cases of ASD across our nation. And the disconnect between professionals needs to be connected. Psychologists, MDs, OTs, Speech Paths, Educators, etc. Interdisciplinary explanations, diagnoses, and interventions are definitely more effective.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
Irena Koshuk	Research infrastructure needs; Dissemination of research information; Strengthening collaboration. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need research infrastructure, i.e. databases, research and clinical trial policies
Jen	I think research needs to be increased. I would participate in research if it came up in my area.Themes Addressed: Research should include the voices and participation of individuals with autism and their families; Current priorities are appropriate/important (research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration)
Jill Longenecker	research workforce development strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Jilene Chivell Griffiths	Workforce support, development and dissemination. Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Anonymous	- internationally based - coordinated through UN WHO - along healthcare model -develop clinical guidelines and standards - multidisciplinary focus - translate research into practiceThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Ken	There need to be more psychologist who specialize in autism, if needed they can gather and disseminate research information. There need to be no psychiatrist cashing in on this as if it is the next big trend to drug somebody for the rest of their existence. People with autism are different, not wrong, the world and the so called normal people have something wrong with it. Normal people resulted from people living in close communities and interbreeding. This cased significant insensitivity in the species. Get a clue. It is a perception, problem, people are not able to grasp.Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Anonymous	Of course there needs to be collaboration, of course there needs to be better research availability and access, etc. All research is important and results should be widely available to the general public. Research that helps to make the general public less fearful, more accepting and inclusive of those with ASD is very important. Research that discovers causality, rather that correlation, is very important.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Anonymous	Workforce development, infrastructure needs, collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies
LeTreese Jones, The A.F.F.E.C.T Institute	Order of importance: 1. Strengthening collaboration 2. Research workforce development (inclusive of all ethnic groups) 3. Dissemination of research information. Additionally, minorities do not benefit from research as they are often not included in clinical trials as a result of trust issues from the past.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce; Research should include the voices and participation of individuals with autism and their families
Michael Brackett, Easter Seals	ASD surveillance research, dissemination of research information, and collaboration with everyone together is HUGE if you really want to work together as a team and be successful!Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
Anonymous	Research infrastructure needs, strengthening collaboration, dissemination of research information Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need research infrastructure, i.e. databases, research and clinical trial policies
Michele Thompson, Nebo School District	Dissemination of research and strengthening collaboration between all parties (researchers, families, educators, community) are ongoing priorities. I work with parents of children with autism and other developmental disabilities who get misinformation on the internet regarding autism or other conditions. This misinformation may be detrimental financially and otherwise. It would be helpful to have a clearing house of correct information that can be readily accessed.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Anonymous	Research infrastructure, research workforce development, ASD surveillance research. More research opportunities for children and families to be a part of. Funding to increase more research across the country.Themes Addressed: Need greater development of the research workforce; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies; Research should include the voices and participation of individuals with autism and their families; Current priorities are appropriate/important (research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration)
Missy Wilson, Easterseals	workforce development strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Marty Weiner	Policy: goals of all social services would be to enable disabled adults (including ASD) to live as full a life as possible, with the least amount of support as possible. Again, it shouldn't be one size fits all. Some adults, with some modifications, can live pretty full, independent lives. Some can't, so they need more services, more assistance. I think workforce development, dissemination of research information (to both public and private institutions), and strenghtening collaboration---high schools, Dept. of Voc. Rehab, public and private institutions---Themes Addressed: Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Nathaniel Geyer, MS	Research on comorbid health problems such as Cancer, STDs, Digestion issues, and Psychological Disorders. Research on other treatment including Acupuncture, ABA, chiropracture, and other treatment. Demographic information based on differences in sex/gender, race/ethnicity, culture, etc. Record linkage between various health related datasets such as EMRs, Medicaid, STD surveillance, birth and death registries, to determine the quality of life of autistics. Integration of adults with autism as mentors in projects.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Research should include the voices and participation of individuals with autism and their families
Noel Arring, DNP, RN, OCN	I believe adding to dissemination and strengthening collaborations could only help those with ASD and the people who are trying to help them.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
ODESSA	All kinds of issues need to be address. Where to go, research, workforce. Just more information. What family can do and where to go for information.Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Anonymous	research workforce development and strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Tamara Ratley, Principal at CEC-North	work development Strengthen collaboration tooThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Robert Daniels, Children's Clinic, LLC	Dissemination of research information and strengthening collaboration, much in the way that pediatric cancers are addressed would be a fantastic improvement to the status quo.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Robyn Smith Tweedy, Mother of a 13 year old boy who has severe Autism and OCD	Yes research research research!! We know its important but helping those who are here and getting older every day!!!! That is what is equally monumentally important!!!!!Themes Addressed: Current priorities are appropriate/important (research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration); Prioritize services and interventions rather than research
Jackie, Parent	Strengthening collerabition with the workforce and infrastructure needs. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need research infrastructure, i.e. databases, research and clinical trial policies
[Minor/Dependent Name Redacted]'s Mom, Parent	I believe we need a credible, objective 3rd party to coordinate all the research going on and disseminate it to the public. Cause and prevention are the most important research priorities. I find it difficult to process information from so many different sources, sometimes the information that gets published contradicts each other. I feel we need an objective research entity, not the government, and not sponsored by any private corporation to coordinate research and publish to the public.Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	infrastructure needs and workforce developmentThemes Addressed: Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	Research in workforce development would be great. The more individuals we have employed the better for them and their families. Strengthening collaborations across all areas is vital. If we cannot work together to solve this problem we will not make any progress. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Xander McDonald, individual w/ autism, parent, sibling, advocate	Dissemination of research information - there needs to be more of it and it needs to be accessible (multiple formats). SFARI is a good start, but more is needed. Building community, increasing empowerment & self determination is what I see as the answer. If a family gets support early on and the individual has access to a community of their peers, that addresses the isolation that is so damaging. We learn social skills best among our own kind. As we grow older, those friends can become our supports, our future roommates, possible dating partners, job leads, business partners. Professionals are valuable but they don't replace a group of peers. We need to invest in building peer support and self determination. Researchers need to partner with autistic people in all aspects of research, from research design to making results accessible. We are a valuable untapped asset. The autism research community has a responsibility to make its results accessible, in plain language, in multiple formats. You should not be gatekeepers of information about our minds and bodies. By not doing a good job of communicating information, you have allowed shysters like Wakefield and others seeking to make a buck off autism to gain dominion over the minds of too many susceptible parents. This leads to a poor outcome for their children.Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Research should include the voices and participation of individuals with autism and their families
Anne Sawyer, Parent	Research infrastructure needs and dissemination of research info and collaboration strength. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need research infrastructure, i.e. databases, research and clinical trial policies
Cindy Clearman	The most important are research workforce development and implementation, dissemination of information, and strengthening collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Donna Miglino, Parent	Studies need to focus on theories that can actually be clinically proven. There is too much money being wasted on concepts that don't have the potential to make a difference in the lives of individuals who are affected by ASD and related disorders. Invest the money in services that will truly help those in the ASD communityThemes Addressed: Increase the dissemination of research, and the translation of research into practice; Prioritize services and interventions rather than research
Anonymous	Research workforce development and strengthening collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Geovana	Research workforce development Research and infrastructure needsThemes Addressed: Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	infrastructure needs, workforce development & collaboration with real life interactionsThemes Addressed: Need greater development of the research workforce; Need research infrastructure, i.e. databases, research and clinical trial policies; Research should include the voices and participation of individuals with autism and their families
Kelly Soisson	Dissemination and collaboration . Research needs to get to doctors who see kids and they need to be knowledgeable to guide parents....Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Anonymous	1. Workforce development 2. Strengthening collaboration 3. Dissemination of research information Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice; Need greater development of the research workforce
Lisa Settles, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders	I feel like there are so many small studies being conducted with questionable methods and results. It would be nice to have larger clinical trials and multi-site collaborations, which I think it beginning to happen especially with genetics.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	Dissemination of research information, strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Paul Raich	In my mind, research workforce development is of paramount importance. To fight autism an army of researchers, therapists, doctors, and scientists need to be trained. Also, collaboration is key. All most all problem go across disciplines. So to resolve the will require a multi- disciplinary approach.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need greater development of the research workforce
Anonymous	ASD research is always important as is the dissemination of the correct research information. the strengthening of collaboration is very important and most important between agencies such as DDS and DMHThemes Addressed: Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice
Anonymous	Main priorities should be strengthening collaboration & research into actual infrastructure needs.Themes Addressed: Improve services infrastructure; Increase collaboration and coordination of research including interdisciplinary research
Suzanna Dillon	1. ASD surveillance research - monitoring of health and quality of life issues longitudinally 2. strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age
Linda LaPointe, JERICHO Bureau for Exceptional Children and Adults	Dissemination of research information and strengthening collaboration. Of course this could be said about all research. Scientists want to be the first - to be the Nobel Prize researcher who discovered this or that - but this pride restricts breakthroughs. Who will inspire this to change when every researcher is vying for limited dollars for their own research which can only be secured with promising stories for their grants institutions or deep pocket donors. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase the dissemination of research, and the translation of research into practice
Jane O'Grady	ASD community education, workforce development for individuals with ASD. Strengthening collaboration between research and community support services. Screening tools covered by medical insurance, especially since school districts are not equipped to handle these screenings (often neuropsychological evaluations are given and scored by pupil personnel who are not licensed to do these tests. Gaps in research need to be applied to current individuals with autism. Too often you are asked to participate in a study and not given results or how it applies to your autistic individual(knowledge is power). There are not enough services able to financially assist families with costs of care. The IRS should not audit you and treat you like a criminal if you need child care for a disabled child or young adult. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Need research infrastructure, i.e. databases, research and clinical trial policies
Anonymous	Better coordination of information dissemination. Research as well as good/reliable practices for providers. Basic care & system navigation information for families. Better sharing/collaboration amongst key players in states/regions. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice.
Lucy Gratz, Job Coach/Developer Assistance	Question 6- D of Rehab funding her job goals made a significant impact thru college-transition planning & our goal ofmedical admin records work in a med facility not requiring constant customer contact, yet systematic was found. Not requiring speed, working with medical specimens and patient records,testing requests-close attention and accuracy. Job developer advocacy with employers for job offers & coaches to transition to jobs is key. I found her job but her vendor got the job offer/coaching for success. Employment prgs are key and need better funding to increase job developers and coach pay. They can help our differently abled young adults earn a living and have diginity. No more studies-just money for job prgs. Research should reach people re services. Limit research when programs to help people with direct services are needed more. Housing is almost not available to Autism spectrum clients-huge shortage for independence, and too costly for many. Most end up living with family-large burdens presented and a lack of independence. Prgs for subsidized housing is more important than more research. Collaboration btw research orgs and educ instit. is important re employ study duplications.We need active prgs for differently abled persons to receive help to be out working. Employer prgs that truly incentivize matter. Otherwise employers say if you see a job in the job board call me and i'll help get you the interview and they call that a disability partnership.Themes Addressed: Increase the dissemination of research, and the translation of research into practice; Prioritize services and interventions rather than research.
Serein Lambert	Prioritize including autistic scholars in all research plans. I have autism and a Ph.D. in Sociology. And I am not alone. Also don't say "surveillance", it is creepy.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Research should include the voices and participation of individuals with autism and their families
Laura Walls	Strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Anonymous	strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers
Alicia	Infrastructure & dissemination of info.. need a huge outreach to new parents and identifying autism in our youngest, and then providing information on what to do next. Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Increase the dissemination of research, and the translation of research into practice.
Lissa Probus, ASBG	Strengthening collaboration among researchers is the best area to develop the fastest approach to new treatment and services that will support families and transitioning adults and should include both patients and caregivers at all levels. Themes Addressed: Research should include the voices and participation of individuals with autism and their families; Increase collaboration and coordination of research including interdisciplinary research; https://mypay.dfas.mil/mypay.aspx
Anonymous	Updated data based on ASD surveillance needs to be made available. How can we accurately prepare for housing and education needs for these individuals, when we are using data that is a decade old? Maybe there needs to be an over haul and of how the surveillance data is taken and disseminated, making it a priority to release data that is closer to 2 yrs old and based on age (for all age groups) and ethnicity.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase the dissemination of research, and the translation of research into practice.
Susan Sheldon, Parent	Research workforce development, infrastructure needs, collaboration between public/private/ and other entities.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Need research infrastructure, i.e. databases, research and clinical trial policies; Improve services infrastructure; Need greater development of the research workforce.
Maureen Durkin, University of Wisconsin-Madison	Can we improve the timeliness and efficiency of public health surveillance of ASD using novel data sources and analytic strategies? What are the best strategies for incentivizing and supporting research training and careers in data analysis, implementation science and evaluation research to ensure optimal services, supports and outcomes for individuals with ASD and other developmental disabilties?Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies.
Kristie	Strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Patricia Garon	Research infrastructure needs would include all workplace facilities to provide environment awareness and worksite adaptations. To recognize, understand and job-site repositions to enhance workplace productivity and employment opportunities to Autistic Adults in a safe, secure friendly workplace environment.Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Need greater development of the research workforce.
Brian Kelmar, Parent of son with ASD	Strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Anonymous	Collaborations between asd population and researchers is of paramount importance so as to make sure policy making and areas of priority allign with asd individuals' concerns and interests. It makes no sense investing time and money into research that the asd community do not feel are priorities to their lives. Please involve asd people in decision making, research and policyThemes Addressed: Research should include the voices and participation of individuals with autism and their families;Increase collaboration and coordination of research including interdisciplinary research.
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	We are concerned 'Four more objectives did not have any funding or projects.' These included database linkage and funding for research replication. We support that the 'OARC developed'a new database, ' 'IAN match[es] scientists with research subjects,' 'NDAR includes genomic data. ' Longitudinal research is needed regarding autism prevalence rates over time. We support the NS-CSHCN 'was used to better understand how children with ASD are identified and treated.' As stated previously, health disparities are an area of concern. We agree differences may not be related to ''actual prevalence but instead may reflect differences in diagnosis (e.g., later diagnosis, missed diagnosis, etc. in minority communities). This needs to be address through cultural and linguistic competency on the part of providers as well as in accessing services, and deeper and authentic partnerships with community-based, family-led, and minority-serving organizations and family and adult leaders from the communities experiencing later and missed diagnosis, more limited access to quality services, and poorer outcomes. We were pleased to see the table data indicating that ''the numbers of shared subjects and samples have doubled at minimum'' We agree that 'Surveillance systems have also progressed over the past 5 years, allowing the tracking of prevalence, age of diagnosis, and other trends over time.' Although there has been increased awareness of autism, more needs to be done in this area. We are concerned, however, that much of these recent research developments are not widely disseminated or understood by families or health and education professionals, the very people who need to be most aware of effective intervention models. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers; Need research infrastructure, i.e. databases, research and clinical trial policies;Increase the dissemination of research, and the translation of research into practice.
Rita Pospisil, West Platte RII	I would consider getting the information out or the dissemination of research information as priority one and then the strengthening of collaboration. We must work together to find answers to the issues faced due to ASD. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; ncrease the dissemination of research, and the translation of research into practice
Anonymous	strengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Anonymous	I consider the most important research priorities, policy issues and gaps for ASD, autism spectrum disorders surveillance, workforce, dissemination the fact that it is nor participatory enough, of which we must strengthen collaborations with diverse, cultural and linguistic communities, informing and engaging families with children, youth, and adults to be at the forefront of shared decision-making, co-creating services, opportunities and supports that meet their most pressing needs, and include their hopes, dreams and individual and collective goals.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age;Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice;Need greater development of the research workforce.
MaryAnna Dunn	I am not sure what you mean by ASD surveillance research. Please define your terms next time. Research infrastructure, dissemination, and strengthening collaboration are all very important. . I would like to see funding for rigorous studies that are unlikely to attract the attention of corporate sponsors. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age;Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers;Need research infrastructure, i.e. databases, research and clinical trial policies;Improve services infrastructure;Increase the dissemination of research, and the translation of research into practice.
Anonymous	Research infrastructure needs, research workforce development and strengthening collaboration. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Need research infrastructure, i.e. databases, research and clinical trial policies; Need greater development of the research workforce.
Tammy G Harrison, Parent of ASD	Strengthening collaboration would broaden the knowledge base, widen the span of help across the board, therefore lessoning the gap.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordinationamong services providers.
Tatia Kortepeter and Vicki Mabanta, A Work in Progress, LLC	We need to look into integration of already established systems instead of creating new systems. There needs to be a better way of disseminating information to families to help them navigate this diagnosis and find practical help on a daily basis. Themes Addressed: Increase collaboration and coordination among services providers;Increase the dissemination of research, and the translation of research into practice.
Michael Hannon	Strengthening collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers.
Anonymous	Disabled individuals are abused all the time. Schools refused to allow parents to observe. There are lacking safe buildings and staff to prevent wandering deaths. Get cameras into buses, classrooms, therapy centers, day centers. Collaborate with non profits together we are stronger. Stop duplicating research. Get a survey from either insurance, SSI, Medicaid and schools on number of individuals they are serving with autism. Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 68 children are living with autism in the United States. Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on surveys do not work. Real numbers and details such as age groupings are urgently needed. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase collaboration and coordination among services providers.
Linda Yin Lee, Self employed pediatric occupational therapist	Is there one place where one can find out how much research is going on, how much funding is used? Why not have a registry where research projects are listed with a simple description and links to further information. The parents and professionals involved with the autistic population have very busy lives because of the nature of what they do. Who has time to search for exact information you may need. The importance of collaboration needs to be recognized at all levels from diagnosis, to treatment, to education and preparing for later life. We do not need nor can we afford more agencies. Let's figure out more ways to collaborate at national, state and local levels and maybe even consolidate to make access to services more efficient. I believe the research is of prime importance for understanding this condition not only because it gives everyone more insight but because parents are constantly looking for answers. Offering more access to new developments in research and for opportunities to participate in research would be helpful by having a list of websites or organizations available through professional provider organizations, special medical practices, parent organizations and even in public places like your local schoo or public library.Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Improve services infrastructure;Increase the dissemination of research, and the translation of research into practice; Current priorities are appropriate/important (research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration).
Denise Rozell, Easter Seals	Easterseals urges the IACC to develop additional collaboration between: research and service providers; research and self-advocates and their families; and research in different disciplines (education, transportation, health, etc.) The knowledge transfer flowing from research to practice to consumer and vice versa is vital, as research must be informed by, and responsive to, the needs of individuals with autism and their families. We must ensure that resources and services are fully accessible, culturally proficient, accessible by speakers of different languages, use symbols, and are available through multiple access points to span the digital divide. An individual with autism or his or her family has little access to information that is tailored to the non-scientific community about what services and interventions are appropriate. Self-advocates and families must be able access the information they need in a format they can easily understand. More information that compares services, best practices, interventions, state activity in an easily accessible format needs to be available. One current resource is the Easterseals State Autism Profiles (http://www.easterseals.com/explore-resources/living-with-autism/state-autism-profiles.html) which tracks state-by-state data on autism legislation and services. Other similar resources addressing additional issues should be developed for self-advocates and families as well as others seeking to improve services. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers; Improve services infrastructure;Increase the dissemination of research, and the translation of research into practice.
Anonymous	Collaboration and sharing of information with those who can make practical interventions and improve quality of life for those with autism. Themes Addressed: ncrease collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Emily Ryan	Strengthening collaboration Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers.
Matthew Carey, Autism Parent	Please focus here on "lifespan issues". Start with the basic question: do we even have an understanding of the problems faced over the lifespan to forumulate questions about infrastructure. We do not. We need ASD surveillance work on adults. Adults of all levels of support needs. We needed this years ago. We have an active ASD surveillance system for 8 year olds. This was recently expanded to younger children. But what about older children and adults? A few years ago we heard about the medical conditions that are more common among adult autistics. We recently had a study that showed the life expectancy for high support autistic adults was age 40. 40 years old. We have spent too much time and too much money on autism to be just learninig such important facts. We need to focus attention on adults. . 6) Study medical service delivery for individuals of all ages who are non or minimally verbal. >70% of information used to diagnose is from verbal communication with the patient. Sensory issues can very much limit diagnosis (how do you diagnose an individual with atypical pain response) Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Improve services infrastructure.
Lori McIlwain, National Autism Association	There is limited surveillance on early-age suicide ideation and overall suicide ideations and attempts in the ASD population. Physical and sexual abuse of those with ASD are also understudied. Overall, a comprehensive federal autism plan is needed to address all issues, and a central channel such as Autism.org would assist with outreach. In terms of collaboration among ASD nonprofit and federal entities, we recommend that the Alzheimer's National Plan Milestones Chart (listed under Appendix 2: Implementation Milestones) be considered as a model to follow. To help bridge current gaps, NAA encourages the creation of a central channel, such as Autism.gov, which can be more easily shared among advocacy groups, media outlets, and local channels, thereby increasing the chances of consistency and exposure among all populations. Overall, we feel a comprehensive federal autism plan is needed.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Improve services infrastructure.
Dr. Marcia Singer, Retired Principal; Co-Chair, of Autism Special Interest Forum with the Association of Childhood Education International	In order to successfully prepare ASD students for a productive future more research is needed in strengthening collaboration and to more widely disseminate current research information. In addition, training is needed so that action research could be conducted in school classrooms and in workplaces.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers; Increase the dissemination of research, and the translation of research into practice.
Anonymous, Pittsburgh Center for Autistic Community	1) Inclusion of the voices of autistic adults in all research regarding autism. 2) Mapping of basic autistic challenges in navigating social structure- maintaining a household; finding and training for suitable, rewarding, sustainable employment; managing personal medical care and insurance hurdles; childcare issues. Themes Addressed: Research should include the voices and participation of individuals with autism and their families; Improve services infrastructure.
Angie Calhoun, Mecklenburg County Pubic Schools	A good quality of life and stable employment. Strengthening collaboration is a good one.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Neil A Snyder, American Speech-Language-Hearing Association	Supporting the development of research that addresses the efficacy of existing interventions aimed at mitigating behavioral and medical challenges should be a top priority. Specifically, research designed to contrast highly structured treatment (i.e., ABA) with other approaches aimed at improving social contextually based communication and the comprehension and production of spoken language, as well as examining the change in outcomes associated with the frequency, intensity and duration of treatment. There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training, and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom? No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individuals' progress using systematic methods, such as in single-subject research design, is also recommended. Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies; Improve services infrastructure;Increase the dissemination of research, and the translation of research into practice.
Amy J, Mrs.	Thanks for damaging so many of our children and breaking up so many families over the year, going on nothing but more of your own shitty, ill-willed, completely ignorant momentum-that's for all of DHHS 'employees' aka human beings with minimal experience and standards, and for all other perfect strangers who make decisions with lives they know nothing about personally and individually. Your priorities are as terrible as the inherent abuse of power and authority. You are and will be held accountable. We do not need more research. The wrong people don't need to keep getting paid to do either nothing or more harm-particularly that in the form of distraction-by-research. What we need is to take care of the known issues first and foremost, that are causing Autism. Research itself is known and proven to lack all integrity. It has little place in the real lives of people damaged right in the doctor's office, by the paid-for research, agenda's, politics/policy, to then be further banked on and dramatized. Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Prioritize services and interventions rather than research.
Becca Lory	Strengthening of collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers.
Allan D. Hollander	A simple way to improve the quality of the research workforce and strengthen collaboration is to encourage more autistic people to join it. Most researchers today have little understanding of the phenomenology of autism in the philosophical sense of the term, and this is to the detriment of the science. In particular, the research community should provide fellowships and other support for autistic graduate students doing research on autism.Themes Addressed: Research should include the voices and participation of individuals with autism and their families;Increase collaboration and coordination of research including interdisciplinary research;Increase collaboration and coordination among services providers; Need greater development of the research workforce.
Anonymous	Strengthening collaboration - invite autistic people to be on all research and policy teams, not just as token members, welcome their input, and use it. Let them be in charge. "Nothing about us without us." - Autistic Self-Advocacy Network.Themes Addressed: Research should include the voices and participation of individuals with autism and their families; Increase collaboration and coordination among services providers.
Anonymous, The Childhood League Center	New research and information affecting professional practice and family choices must to be distributed and accepted in a timely manner. Professionals resistant to accepting and incorporating new advances need to integrate advances so that individualized interventions meet the needs of each individual and family not a clinician. Cross-disciplinary programs and training is essential to the development of competent professionals. Experience and knowledge of other disciplines and current research are imperative pre-requisites for those working with individuals with ASD. Too often training and programs are developed and implemented without seeking knowledge and expertise from other valuable professional fields of study. Examination of the whole child and family are necessary considerations in the development of outreach and research infrastructure.Themes Addressed: Improve services infrastructure;Increase the dissemination of research, and the translation of research into practice.
Gilda M Sanchez	Strengthen collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Angela Lello, Autism Speaks	Current surveillance tools have been instrumental in our understanding of the prevalence of ASD, but are also limited in methodology and scope. These limitations should be addressed by expanding the number of ADDM sites and access to records within sites and by supplementing indirect ascertainment with a direct, population-based case finding approach. This would improve reliability of future prevalence estimates and allow for investigation into why some cases of autism are missed. The latter will shed light on access and barriers to ASD services in the US, among ASD subtypes and ethnic groups. Greater collaboration between research networks and sharing of data is desperately needed in order to translate findings to practice more quickly. Better integration of existing surveillance tools and data sources would further increase our understanding of ASD at a population level. For instance, a system that links ADDM data with that of national surveys. Opportunities exist for leveraging current surveillance and data collection systems to bridge gaps in ASD research. Specifically, ADDM and some national surveys may be used to identify and characterize adolescents and adults with ASD. To further achieve interconnectivity of ASD research data and enhance data sharing capabilities, resources should be dedicated to improving the implementation of NDAR, and developing a comprehensive national ASD research resource.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase collaboration and coordination of research including interdisciplinary research;Need research infrastructure, i.e. databases, research and clinical trial policies.
Annie Acosta, The Arc	Surveillance Site Expansion. Current ASD prevalence rates are based on the 11 ADDM sites across the country that collect data on children (age 8). The variable estimates they report are likely due to both environmental and service system differences. We recommend expanding the number of ADDM sites. Surveillance Tools. Although surveillance tools have been instrumental in our understanding of prevalence, they are limited in methodology and scope. We recommend increasing access to records within sites and by supplementing indirect ascertainment with a direct, population-based case finding approach. This would improve reliability of future prevalence estimates and allow for investigation into why some cases of autism are missed. Adult Diagnosis. There is a glaring lack of a representative cohort of adults with ASD in the US, which is critically needed to estimate prevalence and evaluate numerous other important issues related to adults with autism. The research agenda should support a prevalence study of adults. Studies must address strategies to expedite the process from screening to the receipt of treatment. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Need research infrastructure, i.e. databases, research and clinical trial policies;Improve services infrastructure.
Anonymous	For individual in Self Direction we need to be able to monitor that they are actually accessing the services that they are requesting. For example, If a person has 10,000 for a BCBA but they are unable to find, this is an unmet need. For agencies that are FI's, MSC and Brokers you need to monitor that they are actually giving people choice and not just providing the services and collecting additional fee without changing much for the person and not just family reimbursed respite. We need better connections to our universities to provide hands on training for the future providers and this also serves has an excellent place for individuals to be included into their communities. For traditional agencies, there need to be more oversight on the salaries that are paid to NON DIRECT staffing. We need to pay the direct support staff and lessen the administrative costs within agencies. Also if staff is clinical, they need to be providing clinical supports not administrative. Many agencies have many high paid "Chiefs" and not enough pay for the direct support staff. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Renee Vogt	Autistic individuals need more of a voice in helping to create helpful interventions. We also need to find out how many autistic individuals are misplaced in institutions due to misdiagnosis and poor medical/ psychological care. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Research should include the voices and participation of individuals with autism and their families.
Eileen Henot	***URGENT - July 29!!!**** Please provide input to IACC. You can copy and paste my notes for Question #3 Click here to submit your comments: All data from publicly funded studies should be made available to all via internet. The breakthrough could come from an unknown grad student for all we know. Also, please study Molecular mechanistic functions of vaccine-induced autoimmune disorder. Increased risk of autism from the birth dose of Hepatitis B. Thanks! Also rhogam/Rh negative studies should be prioritized as my personal experience indicates that, though we are a small percentage of the overall population, we are disproportionately represented in the autism/epilepsy communities. Could this be due to the rhogam given or do Rh negative mothers/children react differently to vaccines and their components? The CDC whistleblower indicated that the CDC is sitting on a lot of rhogam data. I want it to see the light of day. Molecular mechanistic functions of vaccine-induced autoimmune disorder. Increased risk of autism from the birth dose of Hepatitis B. A controlled study on autism risk among children given the recommended vaccine schedule compared with those not so vaccinated. Themes Addressed: Need research infrastructure, i.e. databases, research and clinical trial policies; Increase the dissemination of research, and the translation of research into practice.
Stephen Holtsbery	Strengthening collaboration between various researchers on autism issues is essential. Workforce studies can help ASD people be more productive. Surveillance research has to respect the dignity and privacy of the subjects. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase collaboration and coordination of research including interdisciplinary research;Need greater development of the research workforce.
Sherri L Kelly	Strengthening collaboration in many areas is quite important.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Beth Clay	The top research priorities are aggressively funding treatments currently in use, evaluating for safety, benefit, cost savings, timing of treatment - looking at entire protocols as well as individual treatments. Dissemination of existing and future research online and free to the public is vital. Resolving the controversies related to prior studies must take place, and the quality of studies must improve. Independent research needs to increase; and at least a third of advisory bodies who review grants for funding should always be parents of individuals on the autism spectrum; individuals on the autism spectrum also should be included in advisory bodies who make funding decisions. I believe the most important priority to consider in research and policy is the integrity of studies in which corruption is alleged. For 16 years taxpayer dollars have been used to fund studies looking at thimerosal, at the MMR, and to test products reported to offer benefit. Many of the studies are poorly designed, others have questionable practices and finally corruption is alleged in which government officials found a link in the timing of the MMR vaccine and autism, and intentionally changed the study protocol to hide the outcome; and went so far as to destroy documents. It is absolutely essential to get the research house in order immediately. IACC needs to hold a public forum to discuss these allegations, not hide from them. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Need research infrastructure, i.e. databases, research and clinical trial policies; Increase the dissemination of research, and the translation of research into practice.
Azuree Natice	Yes! Infrastructure needs, better data collection and analysis for the purposes of improving the lives of autistic people and their families, more workforce development, better research and dissemination of current understanding and best practices, and hell yes to strengthening collaboration. "Nothing About Us Without Us" isn't just a slogan, it needs to be the bottom line to any programs for or about autistic people. People who are Actually Autistic need to be primary sources for any research, planning, and analysis regarding ASD and what supports, services, treatments and programs can best address the needs of autistic people as well as their families.Themes Addressed: Research should include the voices and participation of individuals with autism and their families; Need research infrastructure, i.e. databases, research and clinical trial policies;Increase the dissemination of research, and the translation of research into practice.
Julie Cadman, Healing Complex Kids	We need to strengthen collaboration between families, medical professionals and the school system. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary research; Increase collaboration and coordination among services providers.
Angelique Higgins, parent	Partner with state universities to implement a 50 state annual surveillance strategy including level of impairment and comorbid conditions. Mandate shorter reporting times for data, so the data are current and not 5 years behind. Strengthen collaboration with practitioners who are recovering children, and study children who have recovered. Develop an openly accessible, layperson-centric, user-friendly website where the data on surveillance can be easily accessed. Use this site to post study results, including raw data, so that collaborators around the world can access and contribute. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age; Increase collaboration and coordination of research including interdisciplinary research;Need research infrastructure, i.e. databases, research and clinical trial policies.
Lisa Ackerman, TACA	' Based on CDC autism estimates, declare autism an epidemic and public emergency. We need a census vs. a survey. ' Push for subtyping to determine appropriate treatments and therapies to meet the unique needs of each individual. ' Since 2006, over $3 billion has been spent on the IACC. Families are not experiencing any changes to services or help for these costs. No innovative treatments have been found. I would like to propose the following changes to the IACC: o Consider a more diverse board at the IACC to include some of the world's researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today o Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum. ' treatments today. ' Identify a task force to address the current and future needs of adults living with autism. ' Prioritize and evaluate all possible environmental causes of autism. ' Operate with a sense of urgency in your strategic plan and committees.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and age;Need research infrastructure, i.e. databases, research and clinical trial policies; Improve services infrastructure.
Liza Krassner, Parent and UC Irvine Public Health employee	Collaboration and workforce development.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchNeed greater development of the research workforce
Marc Freeman	ASD surveillance research, research workforce development and strengthening collaboration should be priorities, especially as they apply to adults. But more than research, we need actual policies that meet the needs of the adults with ASD so they are not falling through the gaps.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and ageNeed greater development of the research workforcePrioritize services and interventions rather than research
M. Hail	research workforce development, strengthening collaboration, research infrastructure needsThemes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease collaboration and coordination among services providersImprove services infrastructureNeed greater development of the research workforce
Anonymous	There needs to be a strengthening of collaboration and an acceptance of more points of view. We are a diverse group, a spectrum of individuals, with different needs, competencies, goals and preferences. Progress will require real inclusiveness ... the participation of private organizations // families // and individuals. There is so much to do...and so far to go.....and unfortunately, we seem to be going backwards to the time where "other people" want to tell us what is best for us and then force it on us via financial force. Consider this viewpoint......put it forward for consideration, and then fix that and go forward again. Person-centered, personal preferences, choice, dignity, respect, civil rights, support. Thank you for accepting our input.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease collaboration and coordination among services providers
Dr. Tanya Skalecki, The Arc Mesa County	Measures need to be put in place to help ensure that the research number of ASD are accurate. This is critical for appropriate interventions, supports, services and funding. More public awareness will bring about a stronger community in collaboration of services and job development to businesses that benefit from the autistic mind. Too many individual with ASD are being placed under different educational eligibility categories and under co-occurring mental health determinations/diagnoses. Individual with ASD need to become self-advocates and by understanding their disability, they can successfully advocate for themselves, and help others understand their actions and needs. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and ageNeed greater development of the research workforce
Racshelle Bean, Parent	We feel it is important to strengthen collaboration.Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease collaboration and coordination among services providers
Anonymous	I suppose strengthening collaboration is an area with room for improvement. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease collaboration and coordination among services providers
Anonymous	stengthening collaborationThemes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease collaboration and coordination among services providers
Anonymous	Assessing the specific symptoms and severity of high-functioning people with ASD to ensure that they are correctly counted - that people without ASD aren't included in prevalence counts and vice versa. Helping smaller researchers access patient populations as well as control participants. This is a major expense and it really limits innovation.Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and ageIncrease collaboration and coordination of research including interdisciplinary research
Anonymous	Strengthing collaboration between autistic people and the research. Autistics have a wealth of information about themselves that researchers have ignored. Involving actually autistic adult people in the research and data collection would be life changing for autistic kids and their neurotypical family members. Themes Addressed: Research should include the voices and participation of individuals with autism and their familiesIncrease collaboration and coordination of research including interdisciplinary researchIncrease the dissemination of research, and the translation of research into practice
Bronte Abraham, Parent	Workforce development and disseminiation of best practices/successful models for inclusive employment, microenterprise etc. is important. Surviellance for these types of programs vs. incidence rates -- is more important to me these days. Themes Addressed: Need more and improved surveillance of ASD prevalence, including by race/ethnicity, gender and ageIncrease the dissemination of research, and the translation of research into practiceNeed greater development of the research workforce
Anonymous	Dissemination of research information with strengthening collaboration. Many times you read about new information about autism but then no follow up. This has been going on for a very long time. "Someday in the future" a repeated phrase but the future is now. We need to shut down the Quacks and Snake oil salesmen who take advantage of vulnerable parents and perhaps harming the children. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease the dissemination of research, and the translation of research into practice
Piper Davis	I would think that research should be concentrated on workforce development and on educating the public about ASD.Themes Addressed: Increase the dissemination of research, and the translation of research into practiceNeed greater development of the research workforce
Anonymous	Dissemination and collaboration are vital to a meaningful outcome for this population. Average-above average intelligence is squandered in sensory-numbing environments. Inclusion in chaos is a recipe for failure. Themes Addressed: Increase collaboration and coordination of research including interdisciplinary researchIncrease the dissemination of research, and the translation of research into practice
Anonymous	Strengthening collaboration, especially with members of the autistic community. Going forward, let's work with ASD individuals and give them a voice in their futures, instead of doing things to them or for them. We need to empower individuals with ASD to live their own lives. Themes Addressed: Research should include the voices and participation of individuals with autism and their familiesIncrease collaboration and coordination of research including interdisciplinary research

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