DSM-5 Good or Bad for Autism?

Pinocchio DSM 5

Pinocchio DSM 5 (Photo credit: Leonard John Matthews)

I really wish that people would not change things concerning the diagnoses of Autism, and the different categories on the Autism Spectrum. I researched a bit to find answers to some of my questions about the new DSM-5.

The clearest and most understandable answers to my questions about DSM-5 came from About.com. I always try to give credit where credit is due. Below is the list of Q and A. It was really helpful to me and I hope it will be to you also.

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 singlemedical 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. So, 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!

It is VERY IMPORTANT to know that the new DSM specifically states that anyone with a well-established autism spectrum diagnosis — including a diagnosis of Asperger syndrome or PDD-NOS — need not be re-evaluated.  Their diagnoses should simply be re-coded under the new Autism Spectrum.  If anyone tells you otherwise, be sure to refer them to the DSM-5.  If anyone insists that you are wrong, be sure to report the incident to the autism organization of your choice (Autism Speaks, Autism Society, etc.), most of which are collecting patient anecdotes relative to the new DSM.

Don’t let anyone run over you. I am sorry to say that many professionals may try to tell you that you are wrong. Remember nobody is a better advocate than you are for your child. I would like to express my appreciation to Lisa Jo Rudy for putting this information in a much better prospective.

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One thought on “DSM-5 Good or Bad for Autism?

  1. Pingback: DSM-5 Good or Bad for Autism? | Sarah's Voice

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