There is a concerning statement released from the Autism Action Network (AAN), that claims there have been losses of services to autistic individuals because of the DSM-5. In response to this loss of services, AAN are trying to block the use of the DSM-5. I have a lot of issues with the claims AAN make in their statement, and I do not think the DSM-5 is the key culprit; allow me to explain why.
First, a brief attack on AAN’s claim that “All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis.” That is a misleading claim at the best. Compare the following statement from the American Psychiatric Association:
“DSM-5 criteria were tested in real-life clinical settings as part of DSM-5 field trials, and analysis from that testing indicated that there will be no significant changes in the prevalence of the disorder. More recently, the largest and most up-to-date study, published by Huerta, et al, in the October 2012 issue of American Journal of Psychiatry, provided the most comprehensive assessment of the DSM-5 criteria for ASD based on symptom extraction from previously collected data. The study found that DSM-5 criteria identified 91 percent of children with clinical DSM-IV PDD diagnoses, suggesting that most children with DSM-IV PDD diagnoses will retain their diagnosis of ASD using the new criteria. Several other studies, using various methodologies, have been inconsistent in their findings.”
OK, we can get past that hiccup and focus on the rest of the points made in the AAN piece; what is going on with the loss if services to people with autism? I have no doubt there has been loss of service, but is it the DSM-5’s fault?
At the most superficial level, the answer is “yes,” because various organisations are claiming it is under the DSM-5 that they are making these changes. But I suggest it is not a correct – or at the very least, a highly debatable – application of the DSM-5 criteria, specifically because of a particular provision that was introduced to the DSM-5 criteria that addresses such concerns. That provision was that anyone with an established DSM-IV autism diagnosis, could still be considered to have a DSM-5 autism diagnosis; which is to say, meeting the DSM-IV autism diagnosis but not the strict DSM-5 criteria, shouldn’t have meant a loss of diagnosis (and therefore, of services).
The exact application and meaning of that provision is debatable and highly controversial, but it nevertheless exists (unless it’s recently been changed, but I am unaware of any such change) and should have protected many people from the loss of services. So have the organisations that have taken away the services perhaps misapplied the new DSM-5, and if so, is it because the DSM-5 is too hard to understand and apply, or is it the intentional fault of the organisations that are choosing to read-down the DSM-5 criteria?
We can ignore all that and still I take issue with the aims of organisations like the AAN that want to shut down the application of the DSM-5 because of loss of services. I take issue because the DSM-5 is intended to be a scientific manual not a political one (even though it has an eye to public application and political pressures). I have written before about how attacks should be aimed at political and private organisations in the way they choose to use otherwise scientific manuals. For example, should those governmental and insurance (etc) organisations be addressing actual and real need, not simply diagnostic labels? I suggest that a system that requires and depends completely on a diagnosis before providing needed services is the flawed one that should be receiving political and public pressure to change. I write that coming from a country where need is treated as primary when it comes to services – the diagnosis is helpful but not definitive for what help is received (for example, through the special education and beneficiary system).
Don’t get me wrong please, I’m not saying the DSM-5 is perfect and only the organisations applying it are problematic, but I do strongly think and feel that the change needed here and at issue here, is around those who decide how to dish out services. Those are public or private (and either way, publicly paid-for) organisations; why attack the professional scientists whose work is being misused? Does the DSM-5 need to be clearer and better researched? Yes. But even the best researched and constructed diagnostic manual would not solve the problems of a public system that insists on a confirmed diagnosis before it helps people in clear need.
My final point of contention with ANN’s claims, and with this area of concern in general, is that the new categories invented and clarified by the DSM-5, need to be taken into account. For example, many of those who may no longer get the DSM-5 autism diagnosis, will now come in under the Social Communication Disorder (SCD) area, or may find themselves better fitting under other headings (perhaps around anxiety or related symptomatic areas). If an organisation has stopped providing autism services to these people, has it also taken the DSM-5 seriously and created new services for those who now come under SCD? If they haven’t shifted these people from one support system to the other, is that not again the problem of the organisation denying the service, and not with the DSM-5? Is it not inconsistent and unethical to deny services based on the DSM-5, but at the same time refuse to create services for new diagnoses created by the DSM-5?
This what I’m trying to say here: The DSM-5 is problematic, but the deeper problem surely lies with the organisations that either misapply, under-apply, or solely rely on the DSM-5. It is my opinion that public attention and pressure should be placed on how those organisations run themselves, rather than pressuring the scientists behind the DSM-5 based on how public organisations then use their (otherwise intended for scientific purposes) manual. At the very least, does it not make sense to pressure these organisations to change how they are being run, alongside complaints about the DSM-5 itself?
Regardless, the situation is unacceptable, and the human need cannot be ignored. Something has to change, but we need to be very thoughtful about what that is, otherwise the underlying problem will not go away, no matter how many manuals are created.
My thanks to Jill at “Yeah. Good Times” for sharing the piece by ANN and thereby bringing my attention to it in the first place.
I have written a lot on the DSM-5, both prior to and after its release, you can find my other posts about it through the search terms “DSM-5,” here is a link to that search term applied to my blog. My piece looking at the “Primacy of Diagnosis” is of particular relevance.