People from all over have asked me what I think the effect of the changes in the DSM-5 will be, and specifically, whether I think the elimination of the Asperger diagnosis will have an effect. I wrote an opinion piece many months ago on this subject as a guest on Richard Rende, PhD’s blog on Parent.com In that blog post, I said I thought there would be a threat to the services offered, as insurance companies would have an excuse to eliminate people from services, arguing that some people now getting services would be sub-clinical, and so not eligible. I said in that blog post, too, that I thought that the great hope was to band together and lobby our political representatives to prevent services from being withdrawn. I know there are a great number of advocacy groups, and some of them actually represent parents and families, but I have to admit that I do not see any great support coming to families from the large lobbying groups or fund raisers in the Autism community. They seem to focus on biological or genetic research, while offering little support for people who need it.
I have read and thought a great deal since writing the previous blog piece, and have a more militant position than I did then. Of course there will be a tremendous effect on all aspects of treatment of Autism Spectrum Disorders (ASD) because of the new DSM5 criteria. That is the intent of the change. But, the change is not in the diagnosis of people with the disorder. I still think that thoughtful clinicians will make accurate diagnoses. I still think that insurance companies and others will use the new criteria to limit payment. My new belief is in the tremendous effect that the changes will have in WHAT services will be allowed.
Who benefits from the new DSM-5 criteria? First, the new external behavior set of criteria will be embraced by the people who do a certain kind of research. Those studies that require easily measured behaviors, that change external behaviors, that is to say, virtually any study funded by government or the big money raisers in the field, will be easier to do, and will look more relevant. Moreover, the grants to do these more easily measured studies will be easier to write. Never mind that their results will still be non-sensical and irrelevant. They will show that they can stop external behaviors, and this will suddenly, because of the new behavioral criteria for Autism Spectrum Disorders, appear relevant. So, this is a boon to much university research, much of the research funded by the government, and much of the research funded by the big charities and funders in the autism community. Their research will not be more helpful to the autism community, but many people make their livings this way, and that is no small thing.
The second group who will benefit from the new DSM-5 criteria are the test makers. This is also a large community of folks, with some overlap, or considerable overlap, with the previous group. Their tests may become more relevant with this new criteria, they may statistically show better reliability, better validity, and be easier for a wider range of people to score. This will make this kind of testing more marketable, without ANY gain for the Autism community. Still, there are a lot of people who make their livings this way, and as I said at the end of the previous paragraph, that is no small thing.
The third, and largest group who will benefit are those people who are either practitioners or advocates for the Applied Behavior Analytic (ABA) Model of intervention for Autism. They have been doing an entirely irrelevant intervention for Autism Spectrum Disorders for years, ignoring the core deficits of Autism as outlined by the DSM-IV TR and earlier versions of the DSM, as there were virtually no behavioral criteria, and virtually all of the criteria had at their core a lack of social and emotional reciprocity. Despite their success convincing government agencies and other partially informed groups that ABA was the way to go, they must have known that the intervention they believed in was not actually addressing the core deficits of Autism. So now, with a few clicks of the electronic keyboard, and a new set of behavioral criteria, ABA suddenly appears relevant! This must be a great relief to those who believe in ABA. There are lot’s of people who make their money this way, from lobbyists, to fund raisers for charity, to simple ABA therapists, and as I said earlier, that is no small thing.
So, there are many who will benefit from the new DSM-5 criteria for Autism Spectrum Disorder. The Researchers, the Test Creators and the ABA Proponents, including Lobbyists and Fund Raisers, all benefit. So to do the Insurance Companies. But, those facing the challenges, the families, they will not benefit. There will be a greater fight for services. There will be diminished availability of ways to intervene with Autism Spectrum Disorder, other than ABA. Other respectful, developmental, appropriate and effective ways to work with ASD’s will be pushed aside, so that the pseudo-scientific methodologies supported by the new DSM-5 can take the exclusive position they are comfortable in. I, for one, wish to support choice and greater availability, and am loath to see an intervention that I find so disrespectful and ineffective be offered as the only choice.
So, I have gotten more certain in the months since I wrote the first guest post for the Parents.com blog, that the changes that are coming are a problem. Whether you identify yourself as an Autistic, someone with Autism, or a loved one or supporter, the coming DSM-5 changes are not intended to make your life better. They were intended for a very different purpose, indeed.