My Comment For the July 2024 IACC Meeting on Caregiving

Below is my comment as submitted for the July 2024 Interagency Autism Coordinating Committee meeting, which is centered on the topic of caregiving. (I hope it is somewhat coherent, as we are all currently riding COVID fever waves.) This issue really matters to me, because it is me. And I worry that the IACC tends to only hear from raging grievance parents. 

I would like to thank the IACC for centering the concerns of caregivers like me. My adult autistic son is an excellent fellow who requires full-time care. My most desperate wish on this topic is that he, his peers, and our community’s families could have sufficient and appropriate services, because too many autistic people and caregivers are floundering or in outright crisis due to lack of appropriate supports. While our complicated lives can be good ones, for us things are often far harder than they should be.

To address this caregiving resource gap, we need to increase funding for autism and disability supports, and streamline herculean application processes. Even well-informed caregivers don’t always know about available benefits, and/or don’t realize they can appeal if their application is rejected. Relatedly, we also need to take action on how caregivers—mothers especially—experience a hit to their lifetime earnings due to disproportionate care obligations, or have to leave the workforce entirely.

Me and Leo on the trail, as usual.

Aside from improving services, one of the most straightforward ways to improve caregivers’ lives is to help them understand the way their autistic people experience the world—different, yes, but also legitimate. We need to increase awareness of freely available autistic-informed caregiver guides like Start Here* by The Autistic Self Advocacy Network, which “cuts through myths and misconceptions and explains autism from an autistic perspective.”

We need to help caregivers understand that autism is inborn, meaning that trying to “cure” autism will not help their child one bit—though it will likely traumatize that child while warping their parents’ attitude towards them. Caregivers should be made clearly aware that the only thing pursuing an autism “cure” will do is make them victims of a mercenary autism pseudoscience industry. 

To help arm caregivers with beneficial autism information, we need more culturally appropriate education materials. We need to make useful autism materials freely available to families who lack autism services due to insurance or financial hurdles, or who cannot access therapeutic and developmental professionals. Such materials can help caregivers learn to proactively support even non-diagnosed autistic people’s sensory, processing, socializing, repetitive, and language traits, and start gaining coping skills to participate in society—however that looks individually.

We need to help caregivers understand that disability is both common and normal. We really need autism caregiver versions of Stacey Park Milburn’s "Disability Doulas" to help ease people into the autism caregiving community. Many of my caregiver friends and I were traumatized after our own kids’ diagnoses, due to being “mentored” by parents who turned out to resent rather than understand their kids’ autism. Our caregivers deserve nurturing community connections, not isolating horror stories.

We need to help caregivers recognize that, per the DSM-5, every autistic person is by definition disabled and deserves supports. When caregivers don’t understand the disabling complexities of autism, they can fall for dangerous stereotypes such as second-guessing the very real support needs of autistic people who don’t have communication or intellectual disabilities. As a result, those caregivers’ autistic people may become hesitant to ask for crucial supports, and can become more likely to experience mental health crises or even suicidality. 

When caregivers of autistic people who have a range of complex and intense support needs doubt their charges’ humanity and agency, and/or mistakenly conflate co-occurring conditions with autism, those caregivers can profoundly limit their autistic person’s quality of life. We need to encourage these caregivers to not give up on communication options and learning opportunities for their autistic people. We also need to help caregivers recognize when “autistic behaviors” are actually due to legitimate environmental or medical issues.  

To improve the chances that caregivers can get the best care for their autistic people, we need to support autistic professionals, for their own well-being and also so we can have more of them available. The autistic professional insider perspective is crucial, as "Autistic people may be at risk for poorer health, and at least part of this is because of being misunderstood by the neurotypical majority." The more caregivers can rely on autistic-informed care, the better their and their autistic person’s lives will be.

We also need to stop overlooking our significant population of autistic caregivers. So many parents find out they are autistic only after their child is diagnosed, and being an autistic parent is hard for many reasons, including competing access needs (kids are loud, messy, and disruptive to routines) and because other parents may not click with you. Autistic caregivers deserve more, and more tailored, supports.

We to help caregivers understand that ABA therapy, though touted as a “gold standard,” has a questionable evidence base, largely misunderstands the needs of autistic children, and that autistic adults who have been through ABA often report deep trauma. Caregivers who are forced to employ ABA need to know that they can continue to advocate for their child.

We need to help caregivers break though misconceptions about education and community: Inclusive education can work, and segregated settings compound isolation not just of our autistic students but of our autistic adults. Caregivers need to be able to make informed choices about where their autistic people live and spend their days.

We need more, and more appropriate, day programs for our autistic adults, as too many existing programs refuse to take clients like my son who have “excessive behaviors.” This dearth of appropriate post-graduation services disadvantages everyone involved, can leave both autistic adults and their caregivers untethered and isolated, and forces many caregivers to leave their jobs.

Most of all, we need to recognize that when our autistic family members thrive, our entire families thrive. And that can’t happen if our caregivers don’t have the resources they need.

Thank you for your time.

Shannon Rosa
Senior Editor
Thinking Person’s Guide to Autism
www.ThinkingAutismGuide.com

My Comment to the October 2022 Interagency Autism Coordinating Committee Meeting

If you're frustrated about the state of government support for autistic people and their families in the United States, one of the most straightforward ways you can speak up about autism policy is to submit a comment to public IACC meetings. What is the IACC, you ask? From their website:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in July 2021 to begin a new session under the Autism CARES Act of 2019.

Every single comment submitted goes on the public record, which can sometimes be ...not a plus because people can and do submit conspiracy theories as well as expletive-filled rants, meaning that the official versions of said comments end up being a series of black redacted bars. But the IACC really does appreciate and take notice of legitimate comments.

I try to submit comments only sporadically because I don't want to be perceived as a gadfly, but it's hard to hold back when the reality is that people either openly (or cluelessly, or misguidedly) working against better futures for autistic people like my son submit the most comments. I did submit a comment for last month's meeting, and the IACC kindly invited me to speak on the record during the meeting (the video and transcript are forthcoming). Here is what I said, much of which I have said before in other arenas but which bears repeating.

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I am writing to you both as the parent of an autistic adult who requires full-time support and supervision, and as the senior editor of Thinking Person's Guide to Autism, which is an autism research and advocacy community with large and active Facebook and Twitter communities—which I moderate. This means that, all day long, I hear from parents, autistic people, professionals, and researchers about their priorities for autistic people to live safe, healthy, fulfilled lives. 

I also participate in several initiatives for best health care practices for patients with neurodevelopment disabilities, in which participants discuss many of the same themes but in more formal ways. The lists of concerns are endless, but priorities include:

• Research on how autistic people can process medications differently than non-autistics. The medical community seems largely unaware that autistic people often have paradoxical or atypical reactions to commonly prescribed medications, such as not reacting to—or being overstimulated by—drugs classified as sedatives. In the worst case scenarios, this lack of knowledge can be (and has been) fatal. 
• Research on why sedation for medical care is an access need. Many autistic people, whether they can communicate effectively in medical scenarios or not, require partial or full sedation to be able to tolerate medical procedures such dental exams and MRIs. Yet this type of sedation is rarely covered by insurance. Research demonstrating the necessity of sedation in these circumstances would not only lead to more access to health care but to better health care outcomes.
• Research on competing sensory access needs. Autistic people don't only have sensory systems that differ from non-autistic people, they often have sensory systems that differ from each other. We need research that demonstrates, for example, why it is not sufficient to hand every student with an autism diagnosis a set of noise-canceling headphones (many autistic kids can't tolerate wearing them, others can still hear disturbing noises when wearing non-professional-grade versions), and it is certainly not appropriate to put autistic people together in classrooms, or other settings, without fully evaluating and accommodating their individualized sensory profiles.
• Research on improving access to autism diagnoses across age, gender, class, and racial gaps. Too many autistic people are being misdiagnosed, categorized as having "behavioral disorders," resorting to self-diagnosis, or being overlooked altogether. They are suffering as a result, leading to avoidable anxiety, depression, isolation, poverty, and suicidality.
• Research on the transition from the school system to the adult world, especially for autistic people with the highest support needs. "The Cliff" is a real thing for students like my son, who is currently facing a complete lack of programs that can enroll an autistic adult with full-time support needs. Even those programs that are *in*appropriate for him currently have interminable wait lists. To compound matters, even though we are fortunate to have funding for home aides, there is currently a shortage of such workers, to the point where my son does not have the staffing he needs and deserves (and has been allocated). If families like ours, which have the language, class, and cognitive advantages that make it easier to navigate often labyrinthine and impenetrable public disability supports systems like Regional Center respite, SSI, and IHSS, still can't find any support, then families that don't have our advantages are certainly worse off.

A final note: I am gladdened about the IACC's current membership, inclusive as it is not only of autistic adults, but of autistics who use AAC to communicate, who have intellectual disability, who are parents, who have family members with intensive support needs similar to my own son, and/or who are people of color. It is hard to have faith in an advisory body that does not resemble the population for whom it is responsible, and it will be useful to see future iterations of the IACC reflect the autism communities to an even greater degree. Also, as someone whose autistic son has limited language, it is important for me to know that autistic IACC members—people who understand my son's life experience in ways that I as a non-autistic person never can—are looking out for his interests as a human being.

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If you want to start submitting comments but need reminders about the submission periods, you can sign up for email notifications at the bottom of the IACC meetings page. I really hope you start participating!

My son, hiking on a blue sky cloudy day.

 

IACC Meeting Tomorrow, January 17

The NIH's Interagency Autism Coordinating Committee, or IACC, will be meeting all day tomorrow, Wednesday, January 17th, 9AM to 5 PM East Coast time. What happens at the IACC meetings? From the site:

"The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call."

So, if you can't attend in person, you can watch the webcast. If don't have all day to watch the webcast, you can choose sessions from the agenda.

The IACC also accepts both in-person and written public comments, which need to be submitted seven business days before the meetings. Below is the comment I submitted for this meeting. Once of these days I'll make it in person.

If you're thinking to yourself, "Oh my comments won't make a difference," then perhaps you should take a look at the wildly varying ... quality of the submitted comments for this session, and also how few they are. Thoughtful, well-reasoned, non-profane, non-pseudoscience, non-self-loathing comments, both public and oral, are in short supply.

I am the parent of a 17-year-old high-support autistic son, and am writing regarding my concerns about his near-future integrated housing options. Those concerns are twofold: 1) I want my son to be part of his community, and 2) I am worried about ongoing efforts to erode existing civil rights safeguards that protect and guarantee integration for people with disabilities. 

As this committee must be aware of the body of research supporting integrated housing options for people with disabilities, in terms of both improved quality of life and wider community disability acceptance, I will instead emphasize the basic decency factor: My son and his adult soon-to-be peers are part of their local communities, and they deserve whatever supports they need to live the lives they want to live—in those communities. I urge the committee to redouble efforts to make those options more readily available, and to identify attempts at segregated housing, veiled or outright, farm-based or "neo-institutional," as the isolating and dehumanizing options that they are. 

I also urge the committee to exercise vigilance and demonstrate opposition to recent Department of Justice rollbacks on disability protections. We cannot allow civil rights for autistic people, including those integration protections upheld by Olmstead, to be decided by business interests (e.g., the sheltered workshop industry suspected to have lobbied for last month's disappointing DOJ actions). My son's housing options need to be determined by what he needs and deserves, and not by the calculations of a profit-minded entity.

I would like to thank the Committee members for both their time, and their hard work.

I may not be able to watch much of it as we're all down with the flu. But I'll try. And I hope you will, if you can, too.

Today! Now! Give the IACC Your Feedback on US Autism Research Priorities!

Today is the last day for Americans to submit feedback to the IACC! Please let them know your autism research priorities. Why should you spend 30 minutes filling out this survey? Listen to Matt Carey, parent of an autistic child and a former IACC member:

"The IACC (Interagency Autism Coordinating Committee) is revising the Strategic Plan for autism research. This is THE document that they produce that can influence how autism research money is allocated.

Do you need something from autism research (almost certainly the answer is yes). Let the Committee know what specifically you want. Do you want better services and educational plans for minimally verbal students? Better job supports for adults (adults who have high support needs or “just” significant support needs)? Let them know.

"This document will shape what we can hope to get in autism research. It is worth spending a few minutes. Go here: https://iacc.hhs.gov/meetings/public-comments/requests-for-information/2016/strategic-plan.shtml. Go now."

And if you need a cheat sheet, I have provided my own answers to the questions, below. Feel free to use my opinions as resources (but please do not copy my answers directly -- that would invalidate both our responses).

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Question 1: When Should I Be Concerned? (Diagnosis and Screening

Please identify what you consider the most important priorities and gaps in research, services, and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis.

We need the re-proportion our focus (and research into and policy funding) into better diagnostic tools to find and identify autistic people of all needs, races, cultures, and genders. That means deeper investigation into and better understanding of autistic traits including but not limited to sensory issues, motor issues, learning styles, communication issues (including early access and support for diverse alternative and augmentative communication methods), and how to accommodate individual variations on those needs.

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important research priorities, policy issues and gaps for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD.

Research into understanding co-occurring conditions is crucial, as is promoting the understanding that treating co-occurring conditions is *not* treating autism.

Understanding the mechanisms by which autism manifests is important -- but it is not nearly as important as ensuring that existing autistic people get the supports and accommodations they need.

The emphasis and funding of research, proportionately, needs to shift to reflect real and desperately pressing needs: What are the underlying neurological, genetic, cognitive, and/or developmental reasons some autistic people are non-speaking? Why is it that autistic developmental trajectories are so different from non-autistic arcs, and how can we ensure supports reflect that often explosively punctuated developmental progress? Why are the mechanisms behind visual and auditory processing difficulties, and why do they get mistaken for behavioral difficulties? etc.

Question 3: What Caused This to Happen and Can It Be Prevented? (Risk Factors)

Please identify what you consider the most important research priorities, policy issues, and gaps for Question 3. Topics include: genetic and environmental risk factor

While causation is a legitimate pursuit from the perspective of scientific curiosity and identifying best supports, the framing of this question has worrying eugenicist implications.

Autistic people have always been part of our communities, and inheritance/constellation traits in the family tree are insufficiently emphasized in the research and education materials. Overemphasis on causation in research also directly underlies under-emphasis on areas that benefit existing autistic people.

In addition, there is very little legitimate research (and much questionable or outright fraudulent) research in the causation area, so we need more rigor in evaluating such studies.

Question 4. How can I understand what is happening? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions.

Pharmacologic: We need more and more differentiated research in this area: Which drugs actually help autistic people, and why? Anecdotal evidence from medical professionals, autistic people, and families alike suggest autistic people have greater incidences of atypical and paradoxical reactions to many medications -- why is this, and what are alternative approaches? Does medical marijuana has legitimate applications, and why? What are the mechanisms?

Behavioral: we need better accountability among behavior professionals. Autistic people, their loved ones, and their supporters have long questioned and outright criticized behavioral practices that focus on "normalizing" autistic people -- sometimes through traumatizing means -- due to refusal understand or accommodate autistic processing, sensory, learning, and motor traits. Autistic people need better options.

Educational: Autistic students deserve educational approaches that truly reflect autistic learning styles. We also need to emphasize the difference that simple accommodations can make for autistic students in classroom settings: Providing noise-canceling headphones, respecting the need for breaks, ensuring available quiet spaces or break rooms, allowing students to move, fidget, or "stim" as needed.

Technology: We need a revolution in investigating and developing communication options for autistic people of all abilities, especially those with motor challenges and/or minimal speech. The current options are too limited and have too many hurdles to effective adoption (outdated technology, expense, user-unfriendly interfaces, etc.).

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important services research, delivery, and policy priorities and gaps for Question 5.  Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

We need better streamlining and public messaging regarding services. Too many families are not aware of available options, especially in traditionally under-supported communities. This extends to which children (and adults) are diagnosed in the first place.

Overall, the emphasis on all of these services must center on understand how autistic people think, feel, and perceive the world. No amount of research or effort will be useful if it is based on bashing a square peg into a round hole. It makes no sense to focus on wandering, for instance, without understanding the legitimate reasons why an autistic person might feel compelled to leave an area -- including normalization-based mistreatment, sensory issues such as noise or smells, hunger, need for intense activity, boredom, etc.

Question 6. What does the future hold, particularly for adults? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services, and policy issues, relevant to Question 6. Topics include: health and quality of life across the lifespan, aging, transition, andadult services, including education, vocational training, employment, housing, financial planning and community integration.

We need more research into these areas. Period. We need the proportion of research to reflect the real need in these areas.

With regards to housing, we need to ensure that options like supported decision making are emphasized, and that autistic people live in, and are not segregated from, our communities -- while still getting the supports they need and deserve, regardless of level of need.

The lack of available, affordable, accessible, and appropriate long-term housing for autistic people of all abilities needs addressing immediately, and on a national scale.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important research priorities, policy issues and gaps for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

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.

Lobbying My Congresswoman on Behalf of Autism and Vaccine Policies: If I Can Do It, You Can Too

At Congresswoman Jackie Speier's San Mateo office,
with staffer Samantha Roxas.

It's funny, really, that I've been doing in-person policy advocacy lately. Personality inventories usually recommend I live in a cave by myself, and avoid selling real estate or doing any kind of political lobbying. So the fact that I've been  lobbying on autism and vaccine policies anyhow demonstrates how much I care about both topics.

Which is why I went to Congresswoman Jackie Speier's office today and talked with staffers including Samantha Roxas. Well, not the only reason. Last month, when Shot@Life sent me to talk about global vaccine policies with Senators Boxers and Feinstein's teams, they also sent me to Congresswoman Anna Eshoo's office. Which was a great meeting! Except I live 200 feet inside Rep. Speier's district. So I wanted to have a chance to talk with my own Rep's team.

From my perspective, the meeting went well. I spend my days so deeply involved in autism and vaccine advocacy that it's sometimes hard to calibrate my information firehose appropriately. Fortunately the staffers were interested, and asked good questions.

First we talked about the re-authorization of the Combating Autism Act, which expires in September of this year. The CAA is a matter I view guardedly. It's not that I don't want more government funding to go towards autistic people; I'm just worried about how that funding is allocated. As my concerns align closely with those of the Autistic Self-Advocacy Network (ASAN), so I explained my concerns using the five talking points from ASAN's CAA memorandum:

1) Re-Balance the Autism Research Agenda to Include Research on Effective Services, and Adults

We need to focus on supporting the autistic people who are already here. My son is starting to use assistive technology to communicate, there are many autistic people whose unaddressed sensory needs interfere with daily living, we need better housing, education, employment. The CAA budget is too heavily focused on causation research.

2) Prioritize Funding for Autistic Adults

Most autistic people are not children; most autistic people are adults. And my own autistic son is already a teenager. We need to prioritize supports and resources for the autistic adults who are already here, who have always been here.

3) Transfer primary responsibility for management of the Interagency Autism Coordinating Committee (IACC) from the National Institutes of Health to the Administration on Intellectual and Developmental Disabilities (AIDD) within the Administration for Community Living (ACL)

Another way to focus less on causation research and more on supporting existing autistic people -- make the department administrating the IACC one already focused on the interests of autistic people, rather than one that tends to view autism as a disease and fund causation research.

4) Change the composition of the IACC to require that at least half of the public members be autistic people and to add representation by DOJ, NCD, HUD and other relevant service-oriented federal agencies.

There are more than enough qualified autistic individuals to serve on the IACC. Busting the myth that such individuals are rare, and they myth that individuals who are non-speaking or have multiple disabilities could not effectively serve, were particularly rewarding areas of discussion with Rep. Speier's staffers. (I recommended they review TPGA's current Autism Acceptance Month interview series.)

5) Change the name of the Combating Autism Act to end the use of stigmatizing language. 

Some might dismiss this as quibbling over semantics, but I disagree. Language matters -- it influences thinking and attitudes. I don't want the government to tell people they should combat my son, or my autistic friends. Autistic people themselves don't like the language, either, and have started a #StopCombatingMe social media campaign.

And then the meeting's focus shifted to my other priority, Global Vaccines. I told the staffers that I advocate for vaccines, in part, as penance for the harm the anti-vaccine autism contingent causes with regards to public health, global health, and autistic people like my son. We talked a bit about how it's reasonable to ask questions about vaccines and autism, but how frustrating it is when people won't accept the answer that vaccines do not cause autism. About how hard it is to unscare people who fell for lazy media vaccine-autism fear mongering, and how silly it is for anti-vaccine blowhard Jenny McCarthy to pretend she bears no responsibility for the current outbreaks of vaccine preventable disease.

And we also talked about why our congress should continue to support global vaccine initiatives:

1) It's the right thing to do

A child dies every 20 seconds from vaccine preventable disease. Emphasis on preventable. Vaccines are a low-cost and effective way for the US to continue its tradition of international goodwill and support, in the best way possible -- by helping to save lives.

2) Diseases like Polio are just a plane ride away

Vaccine uptake in our country has been reduced, mostly due to irresponsible stoking of false autism/vaccine concerns. All those unvaccinated kids have no protection against vaccine preventable disease -- as recent measles outbreaks have demonstrated. If we help eliminate vaccine-preventable diseases in other countries, that helps protect American children whose misinformed parents are putting them at risk.

3) It's cost effective

The cost of vaccinations are so, so much less than the cost of treating a person who has a vaccine-preventable disease -- it costs $20 to vaccinate a child against polio, pneumonia, measles, and diarrhea, but can cost $100 to treat a child who contracts those diseases.

The conversation ended with warm affirmatives all 'round and me unable to keep in a "yay!" which I am guessing is not how many congressional staff meetings conclude. Again, I am not a professional lobbyist. But I did feel I made a difference.

Please believe me: if I can lobby, you can, too. Shot@Life has Global Vaccine Advocacy Guidelines, ASAN has guidelines for joining its #StopCombatingMe campaign. You don't have to meet with anyone in person if you don't want to -- you can write, donate, tweet, call, and just plain agitate. So, what are you waiting for?

My Public Comments for Today's IACC Meeting

I missed watching the live videocast of today's Interagency Autism Coordinating Committee (IACC) meeting because Leo's (really good, details later) annual IEP was held at the same time. But as the IACC meetings are for advising on policy, and as they welcome public input both in person and submitted in writing, I submitted comments to be included in the official public meeting record.

I did this to counter the anti-vaccine autism zealots who would rather put other people's kids at risk from vaccine preventable disease than face the fact that autistic people have always been here. These angry denialist parents tend to mob the proceedings, so as to give their fringe perspectives disproportionate and on-the-record exposure. They need countering.

If you would like to provide reasonable perspectives to balance the belligerent torch-wavers for the IACC's next meeting in July, please send in comments or (even better) ask to give them in person. The meetings take place in Washington D.C. I suspect the IACC members get rather tired of listening to conspiracy theorists, and would like some legitimately helpful input from autistic advocates, parent advocates, and autism professionals.

Here's what I wrote:

Thank you for reading my comments today. My name is Shannon Rosa, and I am the parent of a thirteen-year-old, thoroughly wonderful, autistic young man who does best with 1:1 support. I believe it is the responsibility of all those involved in autism policy to work towards guaranteeing autistic people like my son the support they need to succeed in life, no matter their abilities.

For that reason, I would like to thank the IACC for the positive work it does in advising on autism policy. However, I'd like to speak out about what the IACC can do to help people like my son, and families like ours:

1) Focus on getting supports and resources to autistic people and their families. The CDC's new 1 in 68 numbers for autism prevalence are an excellent opportunity to reinforce the message that autistic people of all abilities have always been part of our society, and that we will all benefit if the proper autism resources are allotted -- whether for housing, employment, respite, education, health care, or therapies.

2) Focus on research that helps the autistic people who are already here. We need to know more about autism and sensory issues, autism and anxiety, autism and co-morbid medical issues, and so on. This should be a higher priority than research into causation.

3) Recognize the agency of autistic people, and include more of them on the IACC itself. I have spent many years working with and learning from autistic adults regarding what my son needs and how he experiences the world. While I support the involvement of parent advocates and autism professionals on the IACC, autistic people themselves should be the majority representation when it comes to advising about autism policy.

4) Finally, stop accommodating pseudoscience. I still keep seeing mentions of vaccine or mercury autism causation theory in the IACC proceedings. Such theories have been debunked repeatedly by legitimate research. Setting aside any time to discuss them is a waste of the IACC's resources, and does not help autistic people.

Thank you for your time,

Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism

For more on what the IACC does, and why it's so important, see my TPGA interview with IACC member Dr. Matthew Carey.

At IMFAR

The photo above was taken by a green hairy monster. How many folks can you identify?

I've written two IMFAR posts for TPGA already: one about yesterday's tapas-style press conference overview of IMFAR research and presentations, and also this morning's IACC overview by NIMH director Tom Insel.

More to come, head over to www.ThinkingAutismGuide.com and LeftBrain/RightBrain to stay updated.

Must-Watch Autism Videos

Here is my current autism video queue. This queue should be your queue, too.

The IACC [InterAgency Autism Coordinating Committee] Full Committee Meeting April 11, 2011. This is a long, long video -- but it's broken up into easily-accessed sections if you view the video through the site. My favorite part so far is Lindsey Nebeker's public comments on safety and the need for support for people with autism like her, but especially for people like her younger brother James, who also has autism but whose needs are more "severe," who lives in a group home, and who will become her legal responsibility when her parents pass away.

The MacNeil AutismNow series is this week's most prominent must-see. Though the madness of spring break means I have yet to see them, their viewing is next on my list (after sleeping, helping Leo sleep too, and wishing fervently for our cheerful but unsettled-stomach son to go 24 hours without projectile vomiting).

Distressingly, feedback from trusted sources is not great. Seth Mnookin called the series "An embarrassing, reckless, and irresponsible coda to Robert MacNeil’s career," as MacNeil let his daughter Alison state, on camera, that "Paul Offit and former CDC director Julie Gerberding 'have lost touch with their humanity. ...I don’t know how either of them manage their guilt and complicity in hurting so many babies.'"ASAN, the Autistic Self-Advocacy Network, is concerned that MacNeil "Leaves Out Key Stakeholders, Relies on Old Stereotypes." Dr. Vincent Iannelli at About.Com Pediatrics worries that "we don't need another show to falsely increase fears of vaccination."

I suspect that the series is made from the perspective of a worried grandfather with a less-than-deep understanding of and experience with autism, whose emotional investment knocked his reporting gears out of balance. If my parents had made a documentary about autism when Leo was little, it would have had a similar tone -- especially if they had filtered it through my then-beliefs about vaccine causation.

Since the series is in the bag, I hope that MacNeil does a follow up in a year or two, after he's talked with adults with autism and -- well -- families like ours, who put respect and love for our kids before their labels and challenges. No one can deny our kids need support, but, as Rivka Iacullo said in today's Thinking Person's Guide to Autism essay, Randomness, "[My child] doesn’t need to be fixed; he needs help in ways I didn’t anticipate."

Here is Robert MacNeil himself, talking with Hari Sreenivasen about the genesis of the series. I think it is important to hear Mr. MacNeil talk about coming at the series as a reporter yet crossing the line into personal territory.



The entire six-part series plus additional interviews and study materials can be found at www.pbs.org/newshour/news/autism.

I've also been enjoying Holly Robinson Peete's series on The Talk, about Teens With Autism. Holly's approach on these segments is all about love, acceptance, and being proud of folks like Winfred Cooper and Carly Fleischmann for their successes.



Have I missed any other recent autism video must-sees?