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Thursday, January 17, 2013

Misreporting the Study of Optimal Outcomes

A previous post described a study showing that some kids with ASD eventually lose the diagnosis.The study is available here.

The press has not always handled autism responsibly, and a number of news reports are inaccurately describing the study:

  • BBC:  "While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism."
  • Fox News:  "New research has found that some children diagnosed with autism actually ‘grow out’ of their symptoms – as well as their diagnosis – when they grow older, BBC News reported."
  • US News and World Report: A new study published in the February issue of the Journal of Child Psychology hints that children diagnosed with autism could grow out of the disorder...The autistic children's original diagnoses were accurately reported, researchers found, leading them to believe that these children may have grown out of their disorders, or perhaps were compensating for their autism-related struggles, reports the BBC. 
  • UPI headline: Study: "Some with autism 'outgrow it'"
  • RTT News: "Some children may actually grow out of autism says a new study from researchers at the University of Connecticut."

The study does not use terms such as "outgrow" or "grow out of," which would suggest that the process is automatic, like losing baby teeth.  The New York Times quotes lead author Deborah Fein:
Dr. Fein emphasized the importance of behavioral therapy. “These people did not just grow out of their autism,” she said. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.” [emphasis added]
Why point out misleading language in news reports?  Very few readers are going to read the NIMH release, much less  the original study.  They will see terms such as "outgrow" and may develop the false hope that the problems associated with autism will just go away by themselves.  An editorial in the same journal urges appropriate caution:
Opening the dialogue on optimal outcomes and using the word “recovery” as a possible outcome must be done responsibly. It cannot detract attention from those who do not fall in this group, those who make less progress than hoped or achieve much smaller gains. How are these children different? How do child characteristics interact with treatment characteristics to foster the best outcomes? Broderick (2009) cautions against a “binary conceptualization of hope” (p. 270) that represents outcomes other than optimal ones as tragic and hopeless. She suggests that other optimal outcomes include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms. Hope for recovery as the only hope would be not only shortsighted, it would be unethical.