Wednesday, September 25, 2013

Changes in the DSM part 5: Autism

First, let me give you the good news: the Substance Abuse and Mental Health Services Administration (SAMHSA) has just released a toolkit that explains how the new Health Insurance Marketplace for behavioral health patients works, and how to apply and get help. It is intended primarily for organizations, but I imagine individuals will find it useful as well. Register here:;.

Now, to my topic: in the DSM V, 3 diagnoses - Aspergers Syndrome, Autistic Disorder (classic autism), and Pervasive Developmental Disorder Not Otherwise Specified (atypical autism) - have been collapsed into one broad category: Autism Spectrum Disorder. This is a major change that effects many people, and it is controversial.

Some say it is good in that it is more inclusive, and recognizes in its language that mental disorders exist on a spectrum, with “gifted” and “normal” behavior at one end and complete lack of function on the other.  It is probably intended to allow more people, for insurance purposes, to get the support and services they need. For some this will be a blessing.

For others it is a matter for concern: if you widen the pool of people competing for services, but don’t widen the pool of resources, how do they get spread around? Autism actually comes in many different flavors, with some individuals appearing merely eccentric and others being profoundly disabled. If they all have the same label, will those who are most ill be able to get the higher level of assistance they need just to survive? And who will be deciding these money allocations? Are they qualified?

Another problem is the lack of differentiation in terms of treatment. How will we distinguish those who have the ability to converse from those who have only nonverbal behaviors, for instance? These differences are no longer recognized as part of the diagnostic process. Temple Grandin covers many of these questions brilliantly and at length in a book excerpt published by in May. You can read it for yourself here: She points out that due to the symptom reorganization, many patients who would previously have been diagnosed with Aspergers or PDD could end up in another category altogether, such as disruptive, impulse-control and conduct disorders, or intellectual development disorders.

The American Psychiatric Association says that all previously diagnosed individuals will keep their diagnosis. But we have yet to see the results of this new labeling in action, and whether it will be an improvement for patients, which is what this should be all about. I am skeptical, myself. As Grandin says, “autism is not a one-size-fits-all category.”

When it comes to mental illness, I’d say that’s true of all of us.

Deborah is the author of Is There Room for Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness, available at Amazon and other major vendors. Visit her web page at, or see her catalog at