Monday, September 22, 2014

An Open Letter to Radiolab: Stop Your Dangerous Autism Reporting

Dear Robert Krulwich, Jad Abumrad, and the Radiolab team:

Your autism-focused episode Juicervose has destroyed my faith in Radiolab and the integrity of its reporting. Rubbernecking about autism and autistic people is usually the realm of inexperienced journalists, but you don’t have that excuse. In fact, you have a MacArthur "genius grant" recipient on your team specifically because of your focus on "bringing new ideas to people." So why did you choose to amplify the same hurtful, tired autism stories the media always airs? And why didn't you show more compassion for autistic people themselves?

Sure, you talked to Temple Grandin. With respect to both her and your team, every person on the planet has heard what Temple Grandin has to say about autism. Her ideas are not new ideas. And yes, you talked to Owen Suskind. It was wonderful to hear his voice and his perspectives. I am sincerely glad he is doing well.

But you used Ms. Grandin and and Mr. Suskind not just as examples of autistic success, but of unrealistic autistic success. Harmful unrealistic success. The kind that, according to Radiolab’s narrative, drives parents like Issy Stapleton’s mother to kill their non-Temple Grandin, non-Owen Suskind autistic kids — kids like my own autistic son, Leo. Kids for whom your story demonstrated little to no sympathy.

You need to know that such tiresomely biased storytelling robs autistic people like Issy Stapleton not only of their victim status but of of their humanity. It turns autistic people — already the target of sloppy media prejudice — into villains. It perpetuates the dangerous and dangerously contagious notion that it is “understandable” for parents to murder their autistic children, if those children cause too much caregiver stress. You told your fiercely loyal and trusting audience, directly, that “unsuccessful” autistic peoples’ lives are of lesser value.

Your participation in such irresponsible reporting needs to stop. I say this as the parent of a high-support autistic son, and as a parent who absolutely understands caregiver stress. I just don’t write about that stress much because Leo does not deserve to have his most vulnerable moments made public, does not deserve for people who neither love nor understand him to cluck their tongues in pity, or use him as an example of how awful parenting an autistic child can be.

My son is not awful. He’s amazing. He’s sweet, thoughtful, silly, and generous. But thanks to your lazy, stigmatizing, one-sided accounts of high-support autistic people like him and Issy Stapleton, your legions of listeners are now unlikely to ever consider those positive aspects of his personhood.

So, please, I am begging you. Please change your approach to reporting about autism and autistic people:
  • Please ask your readers to consider the reasons why autistic people might behave aggressively:  Is there undiagnosed illness or injury, or are communication tools insufficient? Helping people think differently about autism and aggression will help both autistic people and their parents.
  • Please get out the word that it is not just acceptable but necessary for overwhelmed parents to ask for help. If a child is in a position where they are constantly injuring themselves and their parent, everyone is at risk, and it may be that the best place for that child is outside the home (though, again, parents need to investigate reasons for aggression first and foremost). Protecting and providing for a child by finding them the skilled care they deserve is not a parenting failure, yet options and solutions that benefit both child and family are rarely reported.
  • Please stop portraying autism acceptance advocates as delusional optimists bent on “AUsomeness.” It is reasonable for autistic people of all abilities to have their needs both understood and met. It is reasonable for parents to love their high support autistic children fiercely and without expecting them to be “recovered.”
  • Please stop characterizing autistic people as “lost” or “locked away,” and autism causation as some sort of frightening mystery. Autistic people have always been here; we are just getting better at re-categorizing, detecting, and diagnosing them.
  • Please back up your throwaway mention of Neurodiversity by including the perspectives of  autistic people of all ages and abilities. They are not hard to find. Excellent candidates include Emma Zurcher-Long, Amy Sequenzia, Julia BascomZoe Gross, The Autistic Self-Advocacy Network, or John Elder Robison.
And please, try not to let your curiosity get in the way of recognizing the humanity of the people at the very center of your storytelling. Please tell another story about autism and autistic people, and tell it better.

Sincerely,

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

Monday, August 11, 2014

A Critical Response to "The Kids Who Beat Autism"

Steven Kapp, M.A.

I critically lectured on autism and “outcomes” like "recovery" for my UCLA Autism and Neurodiversity class the day the New York Times article The Kids Who Beat Autism came out, then saw a related statement I wrote* for the Autistic Self Advocacy Network shared widely later that same day -- so I mulled over how much more attention to give the NYT story. 

I finally decided to write an updated response for my students, focusing on the cited research, including Catherine Lord's critiques of Deborah Fein, my critiques of Lord, and my critiques of the new article. I otherwise sat on the response for days but decided to share it on Facebook as a status update and then, with my friend Amy Sequenzia’s encouragement, as a public Note. Now, following several TPGA editrixes’ well-deserved vacations, I am honored to give the response wider exposure through my first publication on TPGA.

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The New York Times Magazine article The Kids Who Beat Autism abandons pretenses of objective journalism in its headlining confidence that some autistic children “beat” autism. It makes such proclamations despite admissions that the two separate research studies led by Deborah Fein and Catherine Lord that form the basis of this article do not determine what the apparent behavioral change means and that no one knows how to predict “outcomes” of autistic individuals. It also has a biased concept of autism. It discounts the possibility that strengths of individuals who supposedly “beat” autism, such as in robotics and computer programming, may be related to autism. It discounts that continued, if not additional, disabilities in such individuals, such as ADHD and social anxiety are often associated with autism and may be related to how their autism manifests at this stage in their lives.

All families interviewed participated through the Fein article, which was designed for widespread media exposure, with many problems related to its convenience sample (noted by Lord in a commentary for the Simons Foundation). The researchers recruited through media outlets (e.g., newspapers and radio interviews) and clinical reports of children “known” to have “optimal outcomes.” The study did not require rigorous or uniform early diagnosis, and we know community practices vary greatly in type and quality; maybe the children were misdiagnosed (e.g., simply had a developmental delay). The clinicians making assessments knew into which category participants were classified, and parents’ report of their child’s behavior from many years earlier is subject to biases. That study of course further reveals its biases in labeling autistic children who apparently blend in as “optimal outcomes.” Thus the publicity from this later article puts further pressure on youth to keep up an act that may drain energy and cognitive resources that could go toward better use as coping skills, and as Lord notes, autistics may be particularly susceptible to the pressure of “getting to perfect.”

Individuals paraded as “optimal outcomes” demonstrate the dangers of pursuing normalization even within an article that spins and sensationalizes “beating” autism. One such individual admits that suppressing his harmless, natural expression of “excitement” through hand-flapping was “frustrating” for years -- “It was like smiling and then someone telling you that you shouldn’t smile, that smiling was wrong. Remembering to put my hands in my pockets made me less excited because I had to think about it so much.” Is his learned “habit” of suppressing the “urge” (his words) to flap -- this pathologization of unguarded happiness -- “optimal”? Another former participant from the flawed Fein study reveals his internalized ableism in denying that he flaps his hands when, again, feeling genuine excitement. That he only expresses his excitement in this way when by himself reveals denial and shame that may result from a lifetime of having his natural ways of being ingrained in him as wrong. The declaration of such “outcomes” as “optimal” encourages misguided values that lead families to take extreme measures at great emotional and financial costs, with all too many examples of such in the article.

The article led by Lord, meanwhile, had stronger methodology and she is more careful with discussing the results and the implications of this area of research in both the article and the media, but it is not without problems. That study followed up on children diagnosed at age two by her research team, so the longitudinal research by the main author of the autism field’s most recommended diagnostic instruments offers a more systematic approach. Eight participants no longer seemed to meet diagnostic criteria for ASD by age 19 even though six of them met criteria at the previous assessment at age nine and another had other diagnoses. Lord has noted as part of her work on revising the diagnosis of autism in the DSM-5 that the criteria work best for young children (five-to-eight-year-old white boys). She also agreed in the article and in personal communication (November 2, 2012 at luncheon for UCLA’s Center for Autism Research and Treatment, or CART, lecture on developmental pathways in autism) that these young adults she describes as “very positive outcomes” may struggle more and exhibit more apparent ASD later, for example after graduating from college, an institution that provides structure and allows students to tailor programs to their interests. I noted that an autism specialist had offered to remove my ASD diagnosis when I was an undergraduate, but with the increased demands and less supportive environment of graduate school, I have become more stressed and my autism has become more obvious. The support that I continue to receive related to my autism diagnosis has been invaluable to my personal and career growth.

Autistic people, and our families, deserve better than this irresponsible, appalling article. The struggles of print media and various unchecked opinions regarding autism do not justify accounts of autism that perpetuate problems like quiet hands and warrior parenting. We should aim to help equip autistic people with practical coping skills that build on their strengths and mitigate, compensate for, or accommodate challenges -- from a place of acceptance rather than stigma, fear, and desperation.

*Ari Ne'eman wrote the most popularly shared part, the paragraph without citations.