This week the New York Times published an article about a new study that suggests that the nearly complete revision of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-V, will have an enormous impact on the diagnosis of Autism Spectrum Disorders. Changes in the diagnostic criteria for autism in the DSM-V will literally change the definition of autism. This change has the potential to virtually erase what is considered to be an epidemic of autism by current diagnostic standards.
The pending change itself isn’t a surprise. Those in the mental health field, those with friends or family members with autism spectrum disorders, and those who teach and treat them have known about the coming change for some time and many of us have been dreading it. Why? Because most if not all of those with Asperger’s Syndrome and PDD-NOS will see their diagnoses vanish into thin air and they will no longer be considered to have an autism spectrum disorder, i.e. to the medical community and hence, the larger world, they will no longer have autism. A miracle cure. If only we’d known curing autism was that easy, we’d have insisted the American Psychological Association publish the manual ages ago!
Sorry to be crass. We all know that change can be unsettling, but the opposition to this particular change is understandable. Asperger’s Syndrome and PDD-NOS, considered to be milder forms of autism, in lot of ways can be “invisible disabilities.” Measurements of cognitive and language ability can suggest that kids with these diagnoses are just like anyone else. Yet they aren’t. In nearly every area of their lives, they are challenged and misunderstood. They experience failure constantly and the older they get, the more aware they are of this fact. Having a name for their difference can be an enormous relief for the individual and their families. It allows an opportunity to grieve and to prepare for the road ahead – an opportunity that will be lost when the DSM-V is finally published.
Already, even before the DSM-V has come out, the issue of morphing standards when it comes to autism has already reared its head. Just a decade ago, diagnosis in children under two years of age was almost unheard of. Not so today. I know of a couple of cases of children in my own community who no longer meet the current criteria for autism and are being “released” from the diagnosis as an apparent result of receiving quality, intensive treatment starting at the age of 15-18 months. Traditionally, autism has been considered a permanent, lifelong developmental disability – not something you can be released from. There are those that question the wisdom of “releasing” a child from the diagnosis, to say the least, but the fact is it’s already happening and will happen in spades once the DSM-V comes out.
And that’s just the kids. What about the adults that aren’t diagnosed with Asperger’s or PDD-NOS until they reach adulthood? It can be life changing for some of these individuals to finally understand why they’ve endured a lifetime of struggles and suffering. But if these diagnoses simply disappear in a puff of smoke, so to will treatments appropriately suited to their needs. And that’s a problem. Why? Because adults with normal cognitive ability in all areas except social cognitive skills (i.e. folks currently thought to have Asperger’s or PDD-NOS and have difficulty understanding social rules, initiating and maintaining social interactions, and dealing with the multitude of social problems most people solve with little conscious effort on a daily basis) experience a lifetime of social failure. Not surprisingly, they get depressed. The DSM-V would be happy to diagnose their depression and the pharmaceutical companies would be more than happy to continue to provide psychiatrists with a myriad of chemical options to treat their DSM diagnosed depression. But what kind of help will they get for the genesis of their depression? Without a name, will therapists and educators continue to explore new and innovative therapies for this unique population? No longer considered as having autism, they will be left with labels like unusual… eccentric… different. Unfortunately, these labels don’t come with treatment plans and interventions. They come with social isolation and poor quality of life.
There has to be a better way. Maybe the way we’ve always done things no longer serves us. Maybe our culture has become overly reliant on what a single book has to offer when it comes to the mysteries of the human brain. Maybe it’s time to come up with something better.
Any ideas?





