We are actually on the cusp of new official diagnostic criteria for autism and related disorders. The diagnostic “bible” for neuropsychiatric disorders, in which Autism has been place, is the so called Diagnostic and Statistical Manual of Mental Disorders (also called the DSM), it has had several revisions over the years and the upcoming version 5 will make significant changes in how “Autism” is diagnosed.
Before I get into that, it’s important to understand that the diagnosis, no matter which version of DSM is used, is based on symptoms. There is as yet no chemical or imaging test that helps doctors make the diagnosis of autism.
In general terms, autism and its related disorders share several general problems, each with varying degrees depending on each case. The common areas of dysfunction involve socially engaging with others, communicating (with verbal and nonverbal cues) as well as repetitive behaviors and restricted interests.
Back to the DSM. In version 4, there were several diagnostic categories possible; autistic disorder, Asperger’s, childhood disintegrative disorder, Rett’s disorder and pervasive developmental disorder, not otherwise specified (PDD-NOS). Each had an extensive set of symptom criteria that had to be met in order to justify the diagnosis.
In the proposed version 5, PDD-NOS and Asperger’s as separate diagnosis will be removed as well as Rett’s and childhood disintegrative disorder. The diagnostic label that will be used will simply be “Autism Spectrum Disorder”. It too will have an extensive set of criteria that must be met to justify the diagnosis.
On the surface this seems to simplify things, which should be a good thing. However, on closer inspection, there is potential for many patients who presently carry either the PDD-NOS or Asperger’s diagnosis (which are probably the fastest growing segment of the “autism” community”) to NOT meet the diagnostic criteria for “Autism Spectrum Disorder”.
The problem is that this patient community may lose vital educational and medical benefits by losing their diagnosis. On the one hand it seems good. These people actually are not “autistic” according to the new criteria, but the reality is that many patients now excluded, still have significant impairments in social and behavioral function and need help.
It is not clear yet what the insurance and other health care coverage issues will be till the new DSM is in place, but many in the Autism community are rightfully concerned.
Most people in the autistic community have used the term “autism spectrum disorder” or ASD for many years now. We have recognized the high degree of variability of the disorder; some deeply effected and others only “quirky” and very subtly effected. With the new DSM-5, the term will have a more specific, and perhaps a more restricted definition.
I anticipate this will result in an apparent decline in the rate of diagnosis of autism and perhaps a false sense of security that the problem is not as bad as people say.
My deeper concern is what will become of those who will not meet the official criteria. Will they lose ongoing support services? Will another label be applied? Will this have a greater or lesser stigma? Will school assistance programs like special education services be available to these kids or will they fall between the cracks?
Lots of questions and concerns. We can only wait for the new DSM and observe for any fall out. Meanwhile, we must continue to support, in all ways possible, all our children, young adults and adults who are affected by the wide spectrum of symptoms that who, up to this point in time, have been referred to as having an autism spectrum disorder.
With the new DSM, that term will have a very different meaning. Let’s pray for the best.