DSM-5 and autism.

The DSM is the Diagnostic and Statistical Manual of Psychiatric Disorders. The fifth edition will be published in May of next year. The Manual is very important since it is used by practitioners and policy makers in making important decisions about diagnosis, treatment and public policy. It  has significant implications for decisions about programs for Special Needs students in schools

This past week it has been a topic of conversation, particularly because of the proposal to redefine autism in DSM-5.

I’m not an expert on autism. I have taught children with autism for almost 30 years, the past dozen years in a public school which struggles to carry out an inclusion program for students with autism, Down Syndrome and other Special Needs.

A dialogue erupted  on my Facebook page yesterday when I said that the change in definition was mainly about money.

“Totally correct…if this happens so many kids could lose speech, OT, PT and social skills programming…everything that will help them become productive members of society,” a friend commented.

“I’m an advisor to the DSM-5 child and adolescent disorders workgroup. Although I am not part of the specific group working on Autism, having seen and participated in the DSM-5 process of revising and developing criteria for disorders, I’d be shocked if saving money drove their revisions,” responded another FB friend.

“As a parent, I want ALL available resources for my child to be a productive, active member of society. I also believe it is safe to say that many changes and lack of changes have happened because of the almighty dollar,” came the response.

“In general it’s safe to say that not all psychiatrists and psychologists are mainly concerned with getting things right rather than the almighty dollar. however, in this case, we are talking about a small number of psychiatrists and psychologists who have no financial incentive to change the criteria in a certain direction, but who do have a track record many years long of dedicating countless hours to better understanding and treating autism and related disorders ….. of course as a parent you rightly fight for everything your child needs. i’ve seen this through the eyes of my parents; many years ago my younger brother was diagnosed with PDD when he was 5. that said, i think you and the dsm-5 share the same aims: the most accurate diagnosis that leads to the best research and the best treatments.”

I came back into the discussion:  ”I agree with you that I do not believe what is driving individual research professionals in changing the definition of autism (students I have taught for nearly 30 years) is personal enrichment. However, they must most certainly be aware what will be the results of their findings, and knowing that autism is a spectrum disorder in which rigid definitions are problematic, the results will be disastrous. It does not require a great deal of suspicion to wonder what the financial and political pressures might have been.”

Responded my FB friend: “I definitely agree with the above: a major issue is that academics/researchers are not the best at understanding how their well-meaning revisions can affect policy and healthcare for the general public. There are examples of this having happened with the DSM-IV reformulation in 1994. This is, however, a different concern than viewing DSM-5 workgroup members as corrupt and motivated by money more than a desire to be accurate and helpful. I think energy put into the first concern would be extremely productive and important. Perhaps DSM-5 could develop a way for public health officials, school officials, parents, and other concerned parties to formally give input on this issue. (There was already a long general public commenting/feedback period that ended in June 2011.)”

Me again: When I said it was about money, it wasn’t meant to be a suggestion of individual corruption. But the identification of disabilities has specific and direct financial implications. Autism is in many ways subjectively identified. It is based on how many boxes need to be checked and correlated to observable behaviors. DSM-5 simply changes the number of boxes needed to be checked. The entire history of DSM is full of examples impacting people in just this way: women and homosexuals for example. The first requirement of anyone doing research, treatment o4 teaching is to do no harm. The exclusion of people from services as a result of a change in definition (which will be the main practical result of DSM-5) violates this basic requirement.”

The mom:  ”Autism being a spectrum disorder is never going to lend itself to accurate “diagnostic criteria”. If your child has Autism-high functioning or low functioning, they should be eligible for as many services as necessary to give them quality of life and most importantly vocational skills.”

The Doc: “Of course it would be a disaster if changes to the criteria were inaccurate. there is urgency to get the science and diagnostic criteria right. being over-inclusive or under-inclusive would each be associated with a misallocation of critical resources and services to children in need.”

It is not often that my Facebook page becomes a place for this kind of powerful conversation.*

Interestingly, this morning’s New York Times has this.

“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”

I think that is what I said.

*I actually edited the Facebook posts. I hope the abridged version was fair to the participants. I tried to be.