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Proposed Definition of Autism Will Not Exclude High Functioning Individuals: Preliminary Results

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Proposed Definition of Autism Will Not Exclude High Functioning Individuals: Preliminary Results

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Despite concerns to the contrary, preliminary results of a study released last week show that the proposed definition of autism might not be as limiting as many first thought it would be. It’s been a hot topic throughout 2012—the proposed definition of autism for the upcoming diagnostic manual (DSM-5) has caused many parents, advocates, and health professionals to wonder whether the new definition would exclude high functioning individuals with autism and result in a loss of autism services. 

Earlier in the year, AOTA talked to our autism experts to get their thoughts and opinions about the proposed definition of autism and although they saw many potential positives from the change (e.g., more clarity, better criteria means better outcomes, etc.), they agreed that it was difficult to anticipate the effects until they were put in practice. Read that article here.  

Because so many people had similar concerns, Autism Speaks announced in March that they would fund a study with a large sample of children with autism recently diagnosed with the DSM-IV criteria and reassess the children with the proposed DSM-5 definition of autism. The scientifically rigorous study was one way to determine the effects of the proposed definition before the American Psychiatric Association finalized and published the DSM-5.

Autism Speaks announced last week that the proposed definition of autism in DSM-5 does not reduce the number of individuals who receive an autism spectrum disorder diagnosis. Not only did the vast majority of children in the study diagnosed with autism by the DSM-IV criteria retain their diagnosis with the DSM-5 criteria, but also some children who did not meet the criteria of DSM-IV were “captured” by the new criteria. This gives credence to those who argued that the clarification in the proposed definition will lead to better diagnoses.   

More than 600 children participated in the field trial study and researchers will review the data and videotapes to ensure accuracy. The head of the work group and senior researcher at the National Institute of Mental Health, Susan Swedo, told the Wall Street Journal that the concern that children who need services for autism will be denied them because of the proposed autism definition is “not true.” We will continue to monitor the discussions and study results to provide updates for our members.  

What is your opinion of the new study results? Do you agree with Autism Speaks that this is encouraging news? Tell us in the comments.

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  • From what I have read, they only released studies reporting kappa values for diagnostic stability for children, and I have not yet seen anything for young adults.  That is obviously a very important population because you don't require DSM classification to receive school-based services; classification for those services is dependent on the decision of educational teams that may or may not rely on 'medical' diagnostics.  You REALLY start relying solely on DSM once you are out of the school system.

    Of course it is still an important issue for kids who also receive supports from state/Medicaid based programs that require DSM diagnosis - but the rubber will meet the road on this issue when we find out about diagnostic stability for adolescents and young adults.

    Christopher J. Alterio, Dr.OT, OTR

  • Adding onto Chris' points.  I remember when I was diagnosed, the neuropsychiatrist probably used the DSM IV criteria to see if I fit with the criteria of Asperger's.  In turn, I was able to bring the results to my OT school's disability services in regards to my needs for accommodations for my FW right now (and probably residency for my OTD).  So, DSM is probably more important for those who seek their diagnosis in their teens or older.