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ASAN Statement on Fein Study on Autism and “Recovery”

Recently, an article[i] argued that some Autistic children reach what they call the “optimal outcome” of moving out of autism spectrum disorder (ASD). This study greatly concerns ASAN, both in terms of its inherent scientific limitations and the dangerous values framework behind it.

Adults who clearly met criteria for autism as young children may not show up as Autistic on current behavioral tests, but may by self-report so or appear to by social cognitive testing[ii] or brain scans[iii],[iv]. Moreover, the Workgroup that recently revised the ASD diagnosis stated that current criteria work best for 5-to-8-year-olds[v]. This study’s participants ranged from 8 to 21, with an average age of about 14.

This study stems from an ongoing line of research on “recovery” from autism[vi]. This has shown, however, that the vast majority of those who “lose” an ASD diagnosis retain or replace it with ADHD, anxiety, and/or depression[vii]. The latest article’s editor claims that it begins a “science of hope” for “recovery” from ASD[viii]. Yet the study requires friendships with typically developing peers and normal social communication behaviors to remove ASD, but does not, e.g., exclude suicidal hopelessness, an “outcome” ASAN views as extremely less “optimal” than a happy Autistic person with a full life.

Autistic people do not “recover” and the idea of “recovery” has been profoundly damaging to the Autistic community, encouraging service providers to emphasize normalcy above other more meaningful goals. Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life.

Indeed, the study failed to investigate executive functioning, mental health, academics, or even the current nonsocial behaviors of ASD. It allowed the youth paraded as “optimal outcomes” and the “typically developing” control group to be disabled in any of these and other areas. The authors’ failure to measure distress or specifically report current restricted, repetitive behavior and interests (RRBIs)  are alarming, given that solid measures included in the study cover these areas. The lack of attention to RRBIs is even more concerning given not only their inclusion in the ASD diagnosis, but also that the study reported on RRBIs for all Autistic participants as young children. In fact, the supposedly “optimal” individuals had comparable RRBI scores to the other Autistics. The authors even acknowledge that across the lifespan, Autistics tend to appear more socially typical over time, while RRBIs remain much more obvious[ix],[x],[xi],[xii],[xiii],[xiv],[xv],[xvi],[xvii] ,[xviii]. This means that had the researchers reported them, the youth may clearly demonstrate challenges with flexibility and sensorimotor differences. These challenges of ASD could help to explain that the supposedly “optimal” youth are effortfully, exhaustingly “passing” for normal[xix]; the researchers acknowledge this explicit performance may occur.

While ASAN could go through a much larger laundry list of critiques[xx],[xxi], we will allow the medical, research, and policy establishments to speak for themselves. The Americans with Disabilities Act was amended to define the right to accommodations and protection against discrimination on the basis of history of disability, recognizing that disabled people depend on these rights to function well. Similarly, the upcoming DSM-5 diagnostic manual will define autism’s severity as based on the need for support, recognizing that many Autistics function well in large part because of their current support. It will also allow the ASD diagnosis by history and acknowledge the roles of compensation and social context[xxii]. Some researchers acknowledge the burnout from overcompensation and that such stress can bring back behaviors.[xxiii] As major researchers state, behaviors of ASD “will wax and wane with development[xxiv]…Some children who do well become quite independent as adults but have significant anxiety and depression and are sometimes suicidal[xxv]…We should be aiming to empower both individuals with autism with the skills to cope in the world and non-autistic individuals to accommodate autistic differences, not to reverse the symptoms of autism.”[xxvi]

Thanks to ASAN Research Committee Chair Steven Kapp for drafting this statement.
[i] Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schultz, R.T….Tyson, K. (213). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 195-205
[ii] Lai, M., Lombardo, M. V., Pasco, G., Ruigrok, A. N. V., Wheelwright, S. J., Sadek, S. A., MRC AIMS Consortium, & Baron-Cohen, S. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE, 6, 1-10.
[iii] Ecker, C., Suckling, J., Deoni, S. C., Lombardo, M. V., Bullmore, E. T., Baron-Cohen, S., … & Murphy, D. G. (2012). Brain anatomy and its relationship to behavior in adults with autism spectrum disorder: a multicenter magnetic resonance imaging study. Archives of General Psychiatry, 69, 195-209.
[iv] Ecker, C., Ginestet, C., Feng, Y., Johnston, P., Lombardo, M. V., Lai, M. C., … & Murphy, D. G. (2013). Brain Surface Anatomy in Adults With AutismThe Relationship Between Surface Area, Cortical Thickness, and Autistic SymptomsBrain Surface Anatomy in Adults With Autism. JAMA Psychiatry, 70, 59-70.
[v] Swedo, S.E., Baird, G., Cook, E.H., Happé, F.G., Harris, J.C., Kaufmann, W.E.,…Wright, H.H. (2012). Commentary from the DSM-5 Workgroup on Neurodevelopmental Disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 347-349
[vi] Helt, M., Kelley, E., Kinsbourne, M., Pandey, J., Boorstein, H., Herbert, M., & Fein, D. (2008). Can children with autism recover? If so, how? Neuropsychology Review, 18, 339–366.
[vii] Doheny, K. (2009, May 11). Researchers see recovery from autism: Study shows some children may “move off” the autism spectrum. p brain agile. WebMD. Retrieved from http://www.webmd.com
[viii] Ozonoff, S. (2013). Editorial: Recovery from autism spectrum disorder (ASD) and the science of hope.Journal of Child Psychology and Psychiatry 54, 113–114.
[ix] Fecteau, S., Mottron, L., Berthiaume, C., & Burack, J.A. (2003). Developmental changes of autistic symptoms. Autism, 7, 255-268.
[x] Fountain, C., Winter, A.S., & Bearman, P.S. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129, e1112-e1120.
[xi] Gotham, K., Pickles, A., & Lord, C. (2012). Trajectories of Autism Severity in Children Using Standardized ADOS Scores. Pediatrics, 130, e1278-e1284.
[xii] Guthrie, W., Swineford, L. B., Nottke, C., & Wetherby, A. M. (2012). Early diagnosis of autism spectrum disorder: stability and change in clinical diagnosis and symptom presentation. Journal of Child Psychology and Psychiatry.
[xiii] Lord, C., Luyster, R., Guthrie, W., & Pickles, A. (2012). Patterns of developmental trajectories in toddlers with autism spectrum disorder. Journal of Consulting and Clinical Psychology, 80, 477-489.
[xiv] Norbert Soke, G., Philofsky, A., Diguiseppi, C., Lezotte, D., Rogers, S., & Hepburn, S. (2011). Longitudinal changes in scores on the Autism Diagnostic Interview — Revised (ADI-R) in pre-school children with autism: Implications for diagnostic classification and symptom stability. Autism, 15, 545-562.
[xv] Pellicano, E. (2012). Do autistic symptoms persist across time? Evidence of substantial change in symptomatology over a 3-year period in cognitive able children with autism. American Journal on Intellectual and Developmental Disabilities, 117, 156-166.
[xvi] Piven, J., Harper, J., Palmer, P., & Arndt, S. (1996). Course of behavioral change in autism: A retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child & Adolescent Psychiatry, 35, 523–529.
[xvii] Richler, J., Huerta, M., Bishop, S.L., & Lord, C. (2010). Developmental trajectories of restricted and repetitive behaviors and interests in children with autism spectrum disorders. Developmental Psychopathology, 22, 55-69.
[xviii] Seltzer, M.M., Kraus, M.W., Shattuck, P.T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders, 33, 565-581.
[xix] Kapp, S., & Ne’eman, A. (2012). ASD in DSM-5: What the research shows and recommendations for change. Autistic Self Advocacy Network. Retrieved from http://www.autisticadvocacy.com
[xx] Fein et al. (2013)
[xxi] Gray, J. (2013, January 17). Optimal outcome: I don’t want my kids to ‘outgrow’ their autism. Babble. Retrieved from http://www.babble.com
[xxii] King, B. (2012, July). Autism and the DSM-5. Presentation at the 2012 National Conference and Exposition of the Autism Society of America, San Diego, CA.
[xxiii] Allen, K. (2013, January 13). Autistic children who ‘lose’ diagnosis seem no different than peers: study. Toronto Star. Retrieved from http://www.thestar.com
[xxiv] Landau, I. (2012, May 1). Forever impaired by autism? For some, maybe not: Autism symptoms aren’t static but “wax and wane,” says new research. Everyday Health. Retrieved from http://www.everydayhealth.com
[xxv] Carey, B. (2013, January 16). Some with autism diagnosis can overcome symptoms, study finds. The New York Times. Retrieved from http://www.nytimes.com
[xxvi] Landau. (2012).

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