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.

Reminder: Vaccines have nothing to do with autism. Not a single f***ng thing.

A friend recently asked me to join a discussion on autism and vaccines, in which an acquaintance was parroting, much like our ignorant PEOTUS, the misinformation that vaccines are linked to autism -- and also that anyone who says otherwise has been bought by Big Pharma. Here is my response:

Perhaps a personal story might help.

My high-support autistic son is now a teenager. I initially bought into the message that vaccines caused autism, because in the early 2000s it was not easy for laypeople to get past the media hype on the topic, and find reliable mainstream information.

Post-MIND Institute Session
[image: Leo, a preschool-age white boy,
next to an outdoor picnic table set.]

I enrolled my son in a study on autism and regression at the UC Davis MIND Institute, which was founded by parents who sought cures and believed in a vaccine link. The researchers' conclusion, after reviewing my son's infant, toddler, and preschool-age videos, was that he did not regress or react to vaccines, but rather that he followed a typical autistic path of gaining skills and abilities unevenly, and in some cases more slowly than his peers.

In the meantime, researchers have reviewed data involving millions -- literally -- of kids, and found no link between vaccines and autism. Because there is no link in research, only in anecdotes and testimonials that have never once stood up to scrutiny. Not once.

And even the MIND Institute has shifted its focus to understanding and support, and away from its cure-oriented roots, because the founders' theories turned out to be scientifically implausible.

I've since spend much of my time working with autism scientists and researchers as the senior editor of Thinking Person's Guide to Autism, in order to disseminate the most useful autism information possible. I attend International Meeting for Autism Research (IMFAR) every year, and can happily report that, after years of autism-vaccine papers waning in number, the 2016 conference featured only a single poster on how lingering hoax-based vaccine-autism fears affect the immunization status of autistic kids' younger siblings.

So, no. Vaccines have nothing to do with autism. Not a single fucking thing.

P.S. My son is now fully vaccinated.

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.

Vaccine Advocates: Don't Discriminate Against My Autistic Son

Image: a fully vaccinated autistic teen boy
running towards the camera
in a bright orange sandstone canyon

Public opinion has turned, sharply and loudly, in favor of supporting vaccines. Yay! It took an outbreak of measles at Disneyland for it to happen. Boo! (Your grandmother might have survived her measles, but for others it can be fatal.)

But even though formerly wishy washy types are now joining the previously silent pro-vaccine majority in getting righteously riled about the very real harm from anti-vaccine rhetoric, there's still one part of the argument that needs to change. That I'm asking you to change. Please:

Don't just say: "Vaccines don't cause autism" 

Please say this instead: "Autistic people have always been here. Vaccines don't cause autism"

Simply saying "vaccines don't cause autism" implies that autistic people like my very awesome teenage son Leo should be feared. Which is a really, really hurtful message.  One I'm asking you to help counter. Again, please.

Unless we push back against negative public messages about autistic people -- negative ideas the "autism is vaccine damage" science denialists are largely responsible for and continue to promote -- then the world will continue to be an unfriendly place for Leo and his autistic friends and spectrum-mates. It doesn't have to be that way. As Anne Theriault writes:

"The debate about vaccination should be autism-inclusive, and that means re-evaluating the way we talk about autism and vaccines. Because while it’s great to raise a happy healthy kid, you can do that without turning them into an anti-autism bigot."

Note that I don't hold anti-vaxxers entirely responsible for their initial fall down the misinformation rabbit hole. I blame the media for detonating autism-vaccine fears with its years-long, largely uncontested coverage of Andrew Wakefield's infamous "MMR jab causes autism" article. The article has since been retracted, along with Wakefield's medical license and any shreds of credibility, but even so the media continued to insist on the false balance of "two sides" for years. Even though one side was science and the other was ... Jenny McCarthy's "mommy instinct." (Note that Jenny McCarthy herself is suspiciously silent despite years of fanning autism-vaccine flames for fun and profit.)

Yet I can see why parents who stumbled across the wrong information after their kids were first diagnosed with autism might be confused about who to trust, because I know what it's like to be a scared, misinformed anti-vaxxer. I'm not proud to have once considered my sweet Leo "damaged" because I believed the cure-hawkers who had little interest in Leo's welfare but vested interest in the contents of my wallet. Guilt and anger over being duped when Leo and I both needed so much post-autism diagnosis support is part of what drives my advocacy work now.

So I have some empathy for anti-vaxxers. I believe, to the best of our abilities (including the ability to resist punching our screens), we should remember that they're human too, and ask them what their questions are, and try to answer those questions. People who knew I was misguided and misinformed but who nonetheless listened to my fears, and talked me through them, helped me along my path to recognizing vaccine-autism pseudoscience for what it is: total BS that not only degrades my son but derails autism conversations into causation, when those conversations should be about rights, accommodations, and support.

I won't stop countering anti-vaxxers efforts to dehumanize Leo and autistic people like him. I want a better, accepting, autism-friendly world for my dude. He and his people have always been here: Science says so, historical researchers say so, and very soon Wired reporter and NeuroTribes author Steve Silberman will say so, too. Leo and his tribe deserve better.
 
Please, please help spread the pro-vaccine message in an autistic-positive way. And if you need more ammo for your autism-supporting vaccine advocacy, follow these links:

• Don't Use My Autistic Son as a Reason Not to Vaccinate: My interview at CafeMom:
  thestir.cafemom.com/big_kid/178084/child_has_autism_still_vaccinates
• I’m Autistic, And Believe Me, It’s A Lot Better Than Measles. Sarah Kurchak, at Medium.com:
  medium.com/the-archipelago/im-autistic-and-believe-me-its-a-lot-better-than-measles-78cb039f4bea
• Busting Autism-Vaccine Myths While Supporting Autistic People: My Voices for Vaccines talk:
  www.thinkingautismguide.com/2014/07/busting-anti-vaccine-myths-while.html
• My autism-vaccine mythbusting Pinterest page:
  www.pinterest.com/shannonrosaftw/busting-vaccine-autism-myths/

Do report back and let me know how it goes.

ASF IMFAR Travel Grants - Applications Due Feb 29th!

I was the lucky recipient of an Autism Science Foundation travel grant to IMFAR 2011 -- the International Meeting for Autism Research. The application process was straightforward, and the experience life-changing -- I saw science in action, asked researchers questions in person, reported on multiple studies/presentations for Thinking Person's Guide to Autism, hung out with several incredibly cool people, and was even featured in a local San Diego news segment about the conference.

Lunchmates at IMFAR 2011. Can you identify any?

This year IMFAR is in Toronto, Canada. If you think the $1000 grant could make the difference between attending and not attending, then I encourage you to apply.


 
Details from the ASF website below; the deadline is this Tuesday, February 29th.

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Apply for IMFAR Travel Grant

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.
Applications must be received by February 29, 2012.
Grant Requirements:

• Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
• Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
• After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

• Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.   
• Grants are awarded to US residents only, over 18 years of age.
• Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.  
• Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, "Arial" font, with standard margins.  
• In the email subject line please write: IMFAR Grant.  
• Letters must be received by February 29, 2012.

Recipients will be announced in late March.

• 2011 IMFAR Travel Grant recipients:
• Geraldine Bliss, Parent
• Matthew Carey,  Parent/Blogger
• Shannon Des Roches Rosa, Parent/Blogger
• Mark Fornefeld, Self Identified Individual with Autism
• Abby Hare, Graduate Student
• Erin Lopes, Parent
• Molly McGrath, Self Identified Individual with Autism/MIT Media Lab
• Brianna Miller, Special Ed Teacher, Newark Public Schools
• Sharman Ober-Reynolds, Parent/Senior Research Coordinator, SARRC
• Megan O’Boyle,  Parent
• Max Rolison, Undergraduate Student

Launching now: MyAutismTeam & ASF's Recipe4Hope

Two autism efforts worth your eyeballs (and one that I hope will open your wallet), with a caveat coda:

MyAutismTeam

We've needed an autism social network/Yelp! hybrid like MyAutismTeam (www.MyAutismTeam.com) for just about ever. So I'm pleased that it's finally here:

From the press release: MyHealthTeams today announced the launch of MyAutismTeam, its flagship social network for parents of children on the autism spectrum. MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.

I encourage you to explore the site, and then send the team feedback about your experience as well as what you'd like to see in the future.

Autism Science Foundation's Recipe4Hope

I admire the Autism Science Foundation's dedication to and streamlined effectivenes in "funding outstanding science," so I encourage you to participate in their December fundraising drive, Recipe4Hope:

It takes lots of snow, and some helping hands, to build a snowman. It also takes all of us, working together, to support the research needed to understand autism.
Your donation to the Autism Science Foundation, combined with those from families around the world, will snowball into lasting hope for children, teens and adults with autism.

Every dollar you give to ASF’s Recipe4Hope campaign goes directly to fund pre- and post-doctoral autism research fellowships to encourage the brightest young scientists to devote their careers to autism research.

By donating you are fueling scientists’ discoveries into the causes and treatments of autism. You are giving parents and teachers new ways to change the lives of children, teens and adults with autism. Through a gift to ASF, together, we are mixing up a recipe for hope.

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I think both of these efforts have the potential to benefit Autistics and their families. And I would also like to see each of these agencies include Autistics (plural) on their boards or in official advisory capacities. Autistics have autism insights and investments that even parents, partners, or family members couldn't possibly share, and the range of those autism experiences cannot be represented by a single Autistic individual.

These organizations have power and influence and the ability to shape future policy, attitudes, and opportunities for Autistics and their community -- and so could only benefit from heeding the self-advocate mantra "Nothing about us without us."

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Disclosures: I have consulted with MyAutismTeam on two occasions, and have been the recipient of an IMFAR travel grant from the Autism Science Foundation.

Make a Difference for Autism Research, for Only $1

Seymour & Iz atop Orcas Island's Mt. Constitution

Just got the following press release from the Autism Science Foundation (whose cool shirt my husband is wearing in the photo above):

You Can Make a Difference With Only $1 (Yes, That's One Dollar!)

Can $1 really make a difference? You bet! Today the Autism Science Foundation is the featured nonprofit on Philanthroper.com!

Philanthroper has been described as the "Groupon" of the nonprofit world. Each day they raise funds $1 at a time for a selected nonprofit whose work they think is outstanding and today that's ASF!

Philanthroper is about group giving. If everyone gives a little bit it will add up to enough for us to fund another critical piece of autism research. All funds raised through this project will go directly to research.

Please donate $1 today [https://philanthroper.com/deals/autism-science-foundation] and then SHARE with all your friends. After making your donation, post this Facebook update or send an email to your family and friends. This is an easy and simple way to get even more support for ASF's work.

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.

Blogging IMFAR

I'll be at IMFAR, the International Meeting for Autism Research, for the next four days. I'll be blogging as much of the conference as I can, at the Thinking Person's Guide to Autism, starting with today's 11 AM PST press conference -- so stay tuned!

The number of IMFAR sessions and panels [PDF] is incredible. If you want to make a case for a specific session I should report on, leave a comment and I'll do my best.

Thanks again to the Autism Science Foundation for the travel grant that made my attendance possible. And if you're actually at IMFAR, do find me and say hello, or DM me on Twitter: @shannonrosa.

Also -- if you'd like to come to Sunday's San Diego iPad workshop, please let me know ASAP so we can fit you in.

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Apparently Leo is not very happy that I'm gone. Nor that I, uh, took his iPad 2 to lead Sunday's workshop -- guess I should have had that original iPad raffle next week, eh? He does have his iPod touch, but not great planning in hindsight. No (other) regrets -- Leo's former iPad went to a teacher in our very own resource-challenged school district, a teacher who has an included child with autism in her class. So even though folks entered the raffle from all over the country, I got to hand-deliver the iPad, and it couldn't have been a better match.

Poor Leo. I'll miss him too. There will be lots of Skype video chatting going on, methinks -- we'll see if that will make him feel better or just makes him more sad. How do all y'all keep connected with your kids, if and when you travel away from them?

iPads and Autism Resources: Fundraising, Donations, Research, and Education

While so many of us are waiting for our iPad2s, many (too many) kids with autism and other special needs are waiting to get any iPad -- any iPad at all. Families who want to buy iPads privately often don't have the means (these devices are expensive!), and school districts and insurance companies often cite the lack of longitudinal studies supporting the effectiveness of iDevices in special education.


To address both areas, I've been updating our iPad Apps for Autism spreadsheet with links to iPad Fundraising & Donations, as well as Research & Education links. I've pasted in the current listings below, but will be updating and expanding the list as more resources come in -- or are brought to my attention (hint, hint).

If you want to help a child get an iPad, look through the Fundraising & Donations section for ideas on agencies that are donating iPads to kids in need, or for instructions on how to run your own fundraiser (another hint: fundraising is really easy).

If you are hitting roadblocks with insurance companies or school districts that want official research to justify getting a child an iPad, look through the Research and Education links. Though, as I've said before -- the irony in Leo's case is that he probably wouldn't have qualified for an iPad as an AAC device, since he speaks "fluent requesting" -- yet his iPad has improved not just the quality of his learning but increased his learning opportunities -- he can learn anywhere he can take his iPad

If you'd like to help out a specific child in need of an iPad, consider donating to the Sahara's Voice iPad campaign. Her family is trying to raise funds not just for their own child, but for five other families as well.

I'm very proud of SEPTAR, the local Special Ed PTA I helped co-found -- because of our own successful fundraising, we were recently able to donate ten iPads to our district's Special Ed department! We're doing real good and making a real difference on a local but district-wide level -- more reasons to consider starting a Special ED PTA in your own area.

iPad Resources - Fundraising and Donations                                                                       

• Conover Mobile Technology Grant: www.conovercompany.com/grants
• Danny's Wish: How to Apply for an iPad Grant: www.dannyswish.org/news-events.cfm/id/86386
• HollyRod.org iPads for Communication campaign: www.hollyrod.org/ipads-for-communication
• iHelp for Special Needs www.ihelpforspecialneeds.com
• iPads 4U: Does your family need an iPad? a4cwsn.com/ipad2-4u/
• Squidalicious: How to Get Your Kid With Autism that Wonderful iPad: www.squidalicious.com/2010/11/how-to-get-your-kid-with-autism-that.html

iPad Resources - Research & Education                                                                        

• Helping autistic children with iOS devices: www.tuaw.com/2010/08/18/helping-autistic-children-with-ios-devices
• iPads for Learning - 21 steps to 1:1 success: asp-uk.secure-zone.net/v2/index.jsp?id=639/684/1625&utm_source=ipadsummary
• Learning: Is there an app for that?: Cynthia Chiong & Carly Shuler: www.joanganzcooneycenter.org/Reports-27.html
• Mobile Devices and Autism: Autism News of Orange County [PDF]: www.autismnewsoc.org/docs/AutismNewsWinter11.pdf
• Moms With Apps: Teachers Discuss iDevices in the Classroom: momswithapps.com/2010/12/21/teachers-part-ii
• SETT Framework for AAC evaluations: edweb.tusd.k12.az.us/assistive_technology/AT_SETT.htm

Friends Don't Let Autism Families Read Jenny McCarthy's Mother Warriors

A friend with a child on the spectrum recently tweeted her dismay in seeing numerous parents at her child's ball game reading Jenny McCarthy books. I understand, because I read Ms. McCarthy's Mother Warriors, and am myself distressed by how misinformed the author and her featured parents are regarding legitimate autism research, treatments, and literature.

Mother Warriors is not a book new autism families should be reading, so please don't recommend it to them. Parents and caregivers who don't know any better -- or whose libraries aren't stocking any other autism books -- are going to be stuck with a pitifully skewed, and largely unhelpful take on autism treatments and possibilities.

The main problem is that Mother Warriors is a compilation of testimonials. Ms. McCarthy really does believe what she's saying, and so do the other parents featured in her book. But if this was a book we could take seriously, someone would have edited the self-contradictory statements and omitted the factual errors that riddle its pages. If this was a legitimate information source for autism families, it would list resources besides the ones the author is promoting.

Trusting Jenny McCarthy with your autistic child's welfare and future is like asking an American who spent a couple of years working in an Israeli Red Sea Resort -- and thinks that's all the experience she needs -- to guide you through Gaza. She might be passionately dedicated, she may have even even weathered an attack or two. But she simply will not have the background or breadth of experience to speak for all of the people involved, or to guide you through areas of severest conflict. If you rely on her, there's a good chance you're going to be very, very sorry.

This is not to compare autism to a war zone, but to reiterate that new autism "recruits" are best served by veterans with extensive experience. This is especially true for families whose children are not as high-functioning as Jenny's son.

Autism families, you want better than Mother Warriors. Your autistic child deserves better. Please spread the word.

Update: My extended review of Mother Warriors elaborates on the statements above.

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Seymour suggested that we blog and RT books that families of autistic children should be reading instead. Here are my top six:

Autism From Autistics' Perspectives:

• Born on a Blue Day -- Daniel Hammet
• Thinking in Pictures -- Temple Grandin

Autism From a Parent's Perspective:

• Making Peace With Autism -- Susan Senator

Autism Approaches and Therapeutic Techniques:

• Overcoming Autism -- Lynn Kern Koegel
• Behavioral Intervention for Young Children With Autism -- Catherine Maurice
• Functional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior -- Beth A. Glasberg

The Lupron Protocol: One of the More Repugnant Autism Treatments

I don't tweet as many autism articles per day as Ms. Ditz does -- in fact it appears she's given up the Blogosphere for the Twitterverse; come back to us, Liz! -- but I do forward the ones I've read and found worthy of notice. (You can follow me on Twitter or check the Tweetstream on this blog sidebar to see the latest on what's gotten me hopped up and/or thinking harder.)

One popular Twitter autism topic that deserves a more widespread smackdown is the Lupron Protocol, in which Mark & David Geier "treat" autistic children while incidentally charging thousands of dollars more per month than that chemical castration drug actually costs. Financial exploitation aside, experimenting with such a powerful hormone therapy on children who already have developmental issues makes me feel physically ill. Many parents swear that it has helped their children, but I worry -- as I now do with most non-evidence-based autism treatments -- that those parents are being victimized by yet another chapter of the Society for Scamming Credulous Autism Families.

My favorite anti-Lupron Protocol stance so far (i.e., the one you should forward to all of your friends) is not a blog post but a recent article in the Chicago Tribune. In it, Cambridge Autism researcher Simon Baron-Cohen comes out swinging about just how harebrained and morally questionable the Lupron Protocol is. I've included some standout quotes, and emphasized what I consider to be the most important one:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror," he said."

Several parents whose children are on Lupron told the Tribune that it works, saying their children are better-behaved and show cognitive improvement. "It was an obvious, undeniable result," said Julie Duffield of Carpentersville, whose 11-year-old son has autism. "I wish you could see what he was like before."

Experts said such beliefs are common among parents who try alternative autism treatments. It's easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.

"It has become a cottage industry of false hope, and false hope is no gift to parents," said Autism Science Foundation President Alison Singer, whose daughter has autism. "A lot of these therapies have no science behind them. You are using your child as a guinea pig."

No Brain Scan for You!

Say you have a cute four-year-old girl whose older brother has a few developmental issues.

Say you have become a sucker for researchers who want to run tests on your little girl, as long as those tests are free, and do not involve injecting radioactive materials into her veins because even though that's how you paid for your second trip to West Africa while you were in college*, you haven't entirely worked through your feelings about irradiating children. As long as those tests are part of developmental evaluations that will reassure you that your tiny monkey is fine, just fine.

Say you've hit the jackpot: a study that provides not only a small stipend, but also thousands of dollars' worth of free developmental evaluations -- including an MRI and genetic screening.

The researchers are excited, they think your daughter might be perfect for their needs. Then they tell you what the study is about: Reading acquisition/pre-readers. And this is your daughter:



This is the same kid whose preschool teacher told me, during today's parent/teacher conference, that they'd had to break out new reading learning books for my girl, because she'd already blasted through all the levels they have at her school. (A school which includes kindergarten).

What do you do?

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I have a few scruples, so I sent the study coordinator a link to the above video. She told me that, alas, since Mali can already read, we no longer qualify for the study.

I would be a ball of conflicted but amused irritation if she hadn't already pointed us towards a different researcher and a different study.

*Oh my god this must be why Leo is autistic!

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Clarification: I am much more amused than irritated. I am used to being told that Leo doesn't qualify for such-and-such; it didn't occur to me that Mali might be disqualified for very different reasons.

Please know that I am helping the original researcher find Mali substitutes who are at a different point on the reading learning curve.