7.29.2016

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.

7.27.2016

Rolling Stone: Your Dehumanization of Autistic People IS The Problem

Rolling Stone just published a completely dehumanizing mainstream article about autistic people. Even worse, the article was written by a parent of a high-support autistic young man, and was given the title "Luke's Best Chance: One Man's Fight for His Autistic Son" -- as if the author is his son's champion, when in fact the father is exposing Luke's most vulnerable moments, with little to no understanding or accommodation of his disabilities. And, of course, the obligatory quotes from Alison Singer and Jill Escher about how autistic people need to be housed in group settings for their own safety, as if the autistic self-advocates who fight for desegregated housing don't care about safety as well as rights.

I am, as you might guess, furious that this kind of writing is passed off as brave, honest, and necessary. Not only does it strip people like my (also high-support) son Leo of both their rights and dignity, by depicting them as problematic subhumans instead of addressing the real crisis in the supports and services that both autistic people and their families deserve -- but this kind of ableism perpetuates the kind of socially-enabled violence that led the the murders of nearly 20 people with disabilities in Japan just days ago, as Lydia Brown reminds us:
"Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives -- they must have had it so hard, it must have been such a burden, you musn't judge unless you've walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)"
Here are some thoughts from me and other people on Twitter about the harmfulness of the article. If you feel the same way, please let Rolling Stone know.

7.22.2016

The San Francisco Autism Society Deserves Better Leadership than Jill Escher. Here's Why.


Scott Badesch, President
Autism Society
4340 East-West Hwy, Suite 350
Bethesda, Maryland 20814
July 22, 2016
Dear Mr. Badesch,
I am writing to express my alarm over the unprofessional, divisive, and degrading behavior of San Francisco Autism Society President Jill Escher, and to request that the Autism Society reconsider having her lead our regional chapter.

As a fellow Bay Area parent of a high-support autistic teenager, it is extremely distressing to see Ms. Escher use her position and formal SFASA social media to openly push questionable scientific positions, belittle the needs of autistic people who can speak while making them feel excluded from the ASA community, and frame autistic people in general (and her own children specifically) as catastrophes and “damaged,” rather than deserving human beings with specific needs.
Ms. Escher demonstrated all of the positions above in a recent San Francisco AutismSociety blog post, but I'd like to highlight one passage:
“Autism has degenerated into a philosophy and personality identification rather than as the serious mental pathology. When just about anyone with a quirky or acerbic personality can be placed in the same simplistic diagnostic category as my catastrophically disabled nonverbal children, we have a scientific, moral, and practical problem.”
It is horrifying to see the president of a regional Autism Society chapter display such ignorance and ableism about the very population she is supposed to be serving. It is a basic autism understanding that being able to speak does not preclude having intensive support needs in other areas of life.  

It is also not Ms. Escher’s job to decide who qualifies as autistic. As a chapter president of an organization whose guiding principles include supporting “without regard to a person’s age, race, religion, disability, gender, sexual orientation, income level or level of need on the autism spectrum,” it is her duty to support every autistic person in the Bay Area.
And as Ms. Escher has described herself as a “science junkie,” she must be aware of the research indicating that autistic people have dramatically higher-than-non-autistic suicide rates. When an autism organization official who is supposed to be in service to the autistic population dismisses legitimately autistic people as merely “quirky” – when many of those autistic people’s lives never made sense until they received an autism diagnosis, and who don’t feel like they fit anywhere except in the autism communities – she is compounding the feelings of isolation, alienation, and depression that contribute to those elevated suicide rates.

If the Autism Society is to properly support the San Francisco Bay Area region’s autistic people as well as their families, Ms. Escher cannot be allowed to use the SFASA platform to promote her extremely harmful personal opinions and agendas. And it is simply no longer enough for your organization to issue statements that Ms. Escher's writings "are not the positions of the Autism Society."

Thank you for your time,
Shannon Des Roches Rosa
Redwood City, California
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