Fictitious Thinking: The “New” Definition of Autism

Published on January 21, 2012 by Jennifer Laviano

Do you remember the character Cassandra from Greek mythology?  Her curse was that she could accurately predict the future, but nobody would believe her when she warned them about it.

Today I feel like Cassandra.

In 2009, I wrote a blog post about the impending changes to the definition of “autism” in the DSM-V.  I wrote about my concerns about how these changes would likely impact my clients diagnosed with autism spectrum disorders.  Here we are  in 2012, and all over the news this week is coverage about the changes with the DSM-V…and how they could dramatically impact people diagnosed with autism spectrum disorders.

Sometimes I hate being right.

My personal favorite in the coverage were the claims that the change in the diagnosis would effectively “eliminate the autism epidemic.”  Really?  As if all of those medical doctors and clinical psychologists who have been diagnosing kids with ASD all these years were really just seeing something that didn’t exist?

So do I have this right?  All of those kids that are now diagnosed with PDD-NOS or Asperger’s Disorder are going to suddenly wake up next year on the morning after the American Psychiatric Association passes the DSM-V and they will be cured?  Wow.  That’s some power the APA has!  Let’s think of what we want them to cure next!

Okay, so a reminder that eligibility under the IDEA is separate and apart from diagnosis under the DSM.  The definition under the IDEA for autism is what SHOULD govern eligibility determinations until and unless the IDEA revises the definition in the next reauthorization by Congress.

The federal definition of “autism” under IDEA is:

(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.

(ii) Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section.

(iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied.

Many states have their own definitions and descriptions as well.

That said, I have no doubt that the change in the DSM will result in loads of kids being denied special education eligibility.  Not to mention the insurance coverage that Autism Speaks has done such an incredible job of securing for kids diagnosed with an autism spectrum disorder.

Individuals who have been diagnosed with ASD have very real needs, no matter WHAT you call the disability!

In the meantime, I suggest that many of you who have children with “High Functioning Autism,” Asperger’s or PDD-NOS become very familiar with the IDEA’s definition of “Other Health Impairment.”  Until the dust settles from the DSM-V, it might be the best route for some of these kids to getting, or continuing to receive, special education services.

The IDEA’s definition of an Other Health Impairment is:

Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that–

(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and

(ii) Adversely affects a child’s educational performance.

Remember, once a child is found eligible for special education and related services, the eligibility category is not supposed to drive programming; rather, the “unique needs” of the child do.

Between now and next year when the DSM-V is anticipated to go into effect, I’m going to be doing a whole lot of preparation on this subject, and you should too.

4 Responses to Fictitious Thinking: The “New” Definition of Autism

  1. Rachel Asher
    January 21st, 2012 | 12:03 pm

    I could be wrong on this, but it sounded like Dr. Volkmar was commenting with dismay when he spoke of ending the autism surge through the establishment of new definitions. The New York Times article noted that he had resigned from the DSM revision team early in the process. Perhaps he didn’t like where things were going? If so, it was a confusing comment.

  2. Jennifer Laviano
    January 21st, 2012 | 12:48 pm

    Hi Rachel, that’s what I thought too…the disturbing thing was that it became the lead-in tag on so many news reports!

  3. Carolyn Doan
    June 13th, 2012 | 11:27 pm

    Hi Jennifer,
    I know this piece is dated January, 2012 but am just reading it tonight. I saw the comments and wanted to mention that a friend of mine emailed Dr. Volkmar’s office because she was angry about his comment. He got back to her right away and explained that he was being sarcastic when he commented that the epidemic would end. He DOES NOT support the changing criteria to the DSM-V at all and asked to get the word out there.

    Carolyn Doan

  4. Jennifer Laviano
    June 14th, 2012 | 6:41 pm


    Thanks for your comment; it is greatly appreciated and also instructive. I believed Dr. Volkmar’s comments to be sarcastic; what I was concerned about were the comments made in the high profile, mainstream media by those introducing the topic that were NOT sarcastic at all, but in fact were leading the public to believe that this would end the epidemic. However, since you’re not the first person to have mentioned to me that Dr. Volkmar’s comments were misconstrued, I want to reiterate here that I do NOT believe that Dr. Volkmar thinks that changing the definition will change the kids currently diagnosed. Hope that clarifies! Best, Jen