10 Surprising Facts About the "New" Autism Spectrum Disorder

The Diagnostic Criteria for Autism Changed in 2013

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In May, 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders (DSM), Version Five, better known as the DSM-5. The new DSM, like all its predecessors, adds new disorders; eliminates others; and makes changes to criteria determining diagnoses.

As with the last two versions of the DSM, this version makes significant changes to autism. The new version eliminates the four prior autism spectrum diagnoses: Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Childhood Disintegrative Disorder, and Autistic Disorder), and shifts Rett syndrome, a genetic disorder, into a different category.

Instead of five diagnostic categories, therefore, we have just one: Autism Spectrum Disorder.

What does all this mean to people with autism and those who love, support, teach, or treat them? To find out, I interviewed several major people involved with its creation and/or interpretation; here are ten of the most surprising, significant, and/or useful answers I received.

1. Are Clinicians Required to Use the New DSM-5?

No. The DSM has no legal authority over anyone. It is a "guide." Thus, while practitioners are "highly encouraged" to use it, and are expected to understand it, they are legally and morally entitled to use any designations they prefer. In fact, according Alicia Halladay, Autism Speaks' Senior Director, Environmental and Clinical Sciences, "Because of some of the backlash over this version of DSM, there has been effort from various states to make use of the DSM5 optional. There's no law behind use of DSM - rather a sort of guidance."

2. Do Top Mental Health Experts Agree that the New DSM-5 Represents the Best Thinking of the Day?

No. There are many major thinkers, including the head of the National Institutes of Mental Health (Thomas Insel) and one of the creators of the DSM IV, who think the DSM 5 is poorly conceived. Dr. Allen Frances, of DSM IV fame, has this to say to clinicians in an article in the Huffington Post: "My recommendation for clinicians is simple.

Don't use DSM-5 -- there is nothing official about it, nothing especially helpful in it, and all the codes you need for reimbursement are already available for free on the Internet or in DSM-IV. New codes will go into effect in Oct 2014 -- but these will also be free online." Clinicians do have that option.

3. Will People Who Have Existing ASD Diagnoses Lose Those Diagnoses Under the New DSM-5?

Yes and No. The new ASD diagnosis replaces five prior diagnoses: Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Childhood Disintegrative Disorder, and Autistic Disorder. If you have a pre-existing diagnosis of any of these disorders, you are automatically considered to have an ASD diagnosis. In fact, Dr. Bryan King, who helped write the DSM-5, says "There is a statement written into the DSM5 that 'individuals with a well-established diagnosis of any ASD disorder should be given the diagnosis.'"

4. How Will Medical Codes Work with the New ASD?

We don't really know. The new ASD carries a single medical code (as opposed to the multiple codes provided under DSM IV).

This should help people with prior Asperger Syndrome and PDD-NOS diagnoses to get the level of services they need - fingers crossed. But it is not yet clear how insurers and other providers will handle claims under the new ASD. Since it incorporates all the diagnoses of the old ASD, things should remain more or less static - but the jury is still out on that issue.

5. Is the New Social Communication Disorder Likely to Be a Positive Addition to the DSM?

It's unlikely. People who are being newly diagnosed or re-evaluated, and do not fit into the new criteria for ASD, may wind up with a new diagnosis: Social Communication Disorder. This seems to be a sort of "lite" version of ASD (without sensory issues or repetitive behaviors) - and is similar in many ways to the old PDD-NOS. There are serious concerns that people with this diagnosis may NOT have access to services and legal supports provided to people with ASD diagnoses.

6. How Will Differences Among People with Autism Be Described Under the New DSM-5?

Carefully, or not at all. Distinctions among levels of ASD are to be described individually, by clinicians, using a fairly complex set of "functional levels" and "specifications" (such as non-verbal, intellectually disabled, hyperlexic, and so forth). While the idea is great -- after all, people with autism do differ from one another radically -- there is a real danger that clinicians won't take the time to gather all the information needed to create unique diagnoses for each patient. Even if they do, there's a danger that schools, therapists, and service providers will see "ASD," and stop reading.

7. What Will Happen to Asperger Syndrome?

Asperger syndrome is not gone, but it no longer carries a medical code. Everyone, including Autism Speaks, expects that the term will be used for the foreseeable future as a tool to define and describe a community of people with particular strengths and challenges. Here's how Halladay describes the future of Asperger syndrome: "People with Aspergers who want to maintain that diagnosis and label - because there is a community that identifies with that label - we support that. If they want to use that label and identity, they should be able to do that. It has nothing to do with DSM5. It may not be a diagnostic label. We have an Aspergers toolkit, and we're not changing the name: we're adding new information and explaining how that maps onto the DSM5. As time goes on, that term may or may not be used in the future."

8. Will the Number of People with ASD Rise or Fall with the DSM-5?

It depends on who you ask. It is not yet clear whether the number of people with ASD diagnoses will rise, fall, or remain static with the DSM-5. Several fairly large studies have come out with completely different answers to that question. The first indications are that the number is falling slightly, but once again the jury is still out.

9. How Will Clinicians Determine Whether Symptoms are Severe Enough to Warrant an ASD Diagnosis?

Good question. The diagnostic criteria state "Symptoms need to be functionally impairing and not better described by another DSM-5 diagnosis." What does this mean? Apparently, the answer will be different for each clinician, and each patient. For example, being non-verbal is obviously functionally impairing -- but is difficulty in understanding idioms or sarcasm also functionally impairing? Some clinicians will say yes, others will say no.

10. Is The DSM-5 Version of Autism Likely to Change Yet Again?

The DSM definition of autism has changed in the past, and will change again. At one point, there was only "autism" and no "autism spectrum." Later, with DSM IV and DSMIV-TR, Asperger syndrome and PDD-NOS were added to the mix. Interestingly, the reason why this version of DSM is written as the Arabic "5" rather than the Roman "V" is so it will be easier to create versions. Expect to see DSM 5.1, 5.2, and so forth!


Interview with Dr. Brian King, June 2013. Dr. Bryan H. King is the director at the Seattle Children's Autism Center and director of child and adolescent psychiatry at the University of Washington and Seattle Children's Hospital. He was a member of the work group responsible for revising the definition of autism and related disorders.

Interview with Alicia Halladay, June 2013. Alicia Halliday is Senior Director, Environmental and Clinical Sciences at Autism Speaks.

Allen Frances, M.D. "Two Fatal Technical Flaws in the DSM-5 Definition of Autism" The Huffington Post. June 16, 2013.

Susan L. Hyman, M.D. "New DSM-5 includes changes to autism criteria." The American Academy of Pediatrics, June 2013.

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