Showing posts with label Steven Kapp. Show all posts
Showing posts with label Steven Kapp. Show all posts

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.

Tuesday, June 5, 2012

How the DSM-5 Draft Autism Criteria Will Affect Law, Policy and Service Provision

The Autistic Self-Advocacy Network's Ari Ne'eman and Steven Kapp have released a policy brief: What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft Autism Criteria on Law, Policy and Service Provision [PDF].

The full PDF brief can be found at bit.ly/DSM-5, and "...summarizes the legal and policy details of the program under discussion and attempts to identify the likely implications of the DSM-5’s outlined changes in the criteria for Autism Spectrum Disorder on eligibility, benefits, and access to services and legal rights."

The legal and policy areas in question are described, then followed by analyses of the proposed DSM-5 changes' implications:

  • Individuals with Disabilities Education Act (eligibility criteria)
  • Impact of DSM-5 Shifts on Students with Disabilities Receiving Services Under IDEA
  • ADA/504 Accommodations (guaranteeing non-discrimination re: disability in schools and in the workplace)
  • Impact of DSM-5 Shifts on ADA/504 Protections
  • Medicaid-Funded Developmental Disability Services
  • Impact of the DSM-5 on Individuals Receiving Medicaid-financed I/DD [Intellectually /Developmentally Disabled] Services
  • Supplemental Security Income and Social Security Disability Insurance (income support)
  • Impact of DSM-5 Shifts on SSI/SSDI Applicants and Medicaid Buy In Program Participants
Ne'eman and Kapp outline why you should be concerned [emphases below added -SR]:
Our analysis suggests that DSM-5’s proposed shifts to the definition of the autism spectrum will have both positive and negative implications for children and adults seeking to access services, supports and accommodations. 
With respect to IDEA-mandated special education and related services, ID/DD service provision financed through the Medicaid HCBS waiver program, and possibly the income support and public health insurance offered through the SSI and SSDI programs, the DSM-5’s proposed unification of the major ASD diagnoses into a single diagnosis has the potential to improve access to services. 
The shift of individuals off the autism spectrum into other non-ASD diagnoses, such as the new Social Communication Disorder, or to no diagnosis at all, will likely diminish access to IDEA-mandated services, ADA/504 legal protections, the SSI and SSDI programs and their associated public health insurance, and Medicaid Home and Community Based Services waiver services. These concerns are serious and would have practical consequences to children and adults on the autism spectrum, their families and the professionals who serve them. 
At the same time, it is our belief that the potential problems we have outlined above are by no means inevitable and can be addressed through changes that nonetheless retain the basic structure proposed for the DSM-5. 
We hope readers will submit constructive comments to the DSM-5 working group. Instructions for doing so can be found at AutisticAdvocacy.org's ASAN Talking Points on DSM-5. Comments will be accepted through June 15, 2012. 

Ne'eman and Kapp also noted the following, so stay tuned to AutisticAdvocacy.org for more autism-specific DSM-5 information, recommendations, and action items:
This brief is the first of two focusing on the DSM-5. Our second brief will outline ASAN’s recommendations regarding the draft criteria and proposed severity scale.