The DSM-V Quandary

There is a proposal to group together some of the sub-types of autism such as Asperger Syndrome and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) under one diagnosis which would be autism spectrum disorders. Asperger Syndrome (AS) only made it into the DSM IV in 1994 so it is a relatively new diagnosis but we have come a long way in helping those that fall into the AS category since the diagnosis came into being.

Autism is such a broad spectrum. You see people ranging from the very severe with no language skills and require round the clock care to those that speak very well and can lead independent lives. When a disorder is this broad it seems logical to have sub-types to better help this wide range of functioning. There was a time pre – 1994 when those that fell under the AS diagnosis were not being diagnosed at all and were thought of as eccentric or “different”. We did not recognize the need for social skills training or supports for successful independent living. They spoke well and many excelled academically so maybe they were just preoccupied with their special interests.

One thing I don’t think that is being taken into account if the diagnosis of AS is removed is the culture and identity that has sprung up around this group. I speak with many young adults who have this diagnosis and have a strong identity around it. This label has helped them to understand themselves better and appreciate their differences. They have their own “norms” and ways to celebrate their different ways of thinking. Our society often under estimates the contribution people with this diagnosis have made. To really be an expert in anything, you have to have the ability to focus on details and be prepared to put thousands of hours into that interest. I see our AS folks doing that level of work.

I have had the pleasure of meeting many talented artists like Kaitrin Beechey. Kaitrin and I spoke last month about the possibility of AS being lumped under ASD and not a separate diagnosis. She panicked at the thought because she has a strong identity around being a person with Asperger Syndrome or Aspie. So do many of the adults I know and they are not ashamed of having such a label. They’ve been able to access supports to help them be successful in their adult lives.

John Simpson, my UK friend whom I’ve written about many times, is one of the most eloquent speakers I’ve ever met. I am in awe of his intelligence yet here is a man who would have difficulty living on his own and being able to attend to his daily needs. He has struggled with employment. John was institutionalized as a teen with mental health issues and finally received his diagnosis at age 16. What would have happened to him without the AS diagnosis? Would the psychiatric profession have labeled him with an autism spectrum disorder? I have my doubts because of his level of intelligence.

I like what Simon Baron-Cohen had to say in his recent article in the New York Times:

We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.

I know we have to think in scientific terms when it comes to diagnosing people with any mental disorder. We need criteria, standardized tests and assessments. I think we also have to take into consideration the human condition as well. It would be interesting to hear what the families who live with AS have to say or even the professionals that work with this group. Asperger Syndrome is still under diagnosed even with the criteria we have in place, especially in females.

I’ll be interested to see where we go with this. Sensory Processing Disorder is also fighting for a place in the next DSM V. Those of us who live with children who have sensory dysfunction know this is a real thing and not something in the child’s head. We shall have to wait 2 years to see what the DSM V holds.