Is the DSM-5 the correct culprit in loss of services?

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.

By Jussi Mononen, via Flickr

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.

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9 Responses to Is the DSM-5 the correct culprit in loss of services?

  1. jillsmo says:

    I’m double commenting 😉

    My concern isn’t with the DSM, it’s with the school districts (and to a lesser extent, insurance companies, but only because I don’t often deal with them) and how they will manipulate this in order to meet their own needs. They already will do whatever it takes to deny services, relying on the very real ignorance and fear of parents who don’t fully understand the laws and how to advocate for their kids. This is just another opportunity for them to do so, and now we hear that “reports are coming in” of it already happening. 😦

  2. jillsmo says:

    Oh, and I need to add that I totally agree with you, our fight should be with the school districts and not the manual, itself. Which mine just happens to be! 😀

  3. Jon Brock says:

    Hmm. First of all, the research on DSM-5 was pretty much all of very poor quality. Huerta et al in particular was deeply deeply flawed.
    http://crackingtheenigma.blogspot.com.au/2012/10/more-dsm-5-confusion.html

    Second, in DSM-5, SCD is considered a language disability, completely unrelated to ASD. There’s absolutely nothing in DSM-5 that implies that autism service providers should do anything for people with SCD.
    http://crackingtheenigma.blogspot.com.au/2013/01/goodbye-pdd-nos-hello-scd.html

    • Jon,

      If the studies were of poor quality, that applies to the ones that found huge losses in diagnosis as well as those that found little loss, the conclusion of overall inconsistency cited in the APA piece continues to be the accurate one compared to AAN’s claims about “all the studies.”

      As for SCD, a social communication disorder will potentially capture those who have social communication issues that fall short of an autism diagnosis, considering that those with issues with social communication are often somewhere on or close to the spectrum, it is not entirely unrelated to autism. I never said, nor I thought implied, that those who supply autism services are the ones who should be responsible for supplying services for SCD (or anxiety, or OCD, or any of the other relevant symptoms and conditions), though that would be sensible nevertheless for some. The point is there are other relevant new and clarified diagnoses that surely should qualify individuals for relevant supports; if supports are taken away because of the DSM-5, under the same rationale, would and should they not also be created for those people with the new diagnoses (even if through other providers)?

      I expect your presumptions (and perhaps my own then?) as regards to what I meant about service providers, is affected by the ways different countries organise and provide services for disabilities. Even if that is a factor here, it doesn’t undercut the point about how services are rationalised and allotted out by governments and private organisations when relying on the DSM.

    • Perhaps it would help if I clarified how some of the core funding and service provision works here: If the individual has needs, they are assessed (by medical professionals, and by NASC which assess on need not just diagnosis), and appropriate services are paid for and organised by the Ministry of Health and Ministry of Education (and charities). When it comes to ASD and related conditions for example, that may include physio, OT, ST, just for starters. There are some autism-specific services of course, but there are also plenty of services that cover autism-like issues that aren’t actually autism or diagnosed as autism. So, here at least, you could still access a range of relevant services that will help with autism, based on your need not just diagnosis, and that includes school supports. If a system relies heavily on diagnosis only, then removing supports for the individuals who “used to have” ASD, would and should be replaced by services for other new conditions they may otherwise newly have or have always had (such as anxiety), to be consistent about DSM5 use.

      None of what I’ve just said even begins to touch on private and insurance covered services, but the core issues for that too remain the same with similar divisions between the funding provider and the actual service provider, and related issues of where funding comes from in the first place.

  4. suburp says:

    I feel it really depends how – and for what reason – the people you actually deal with are using the DSM-5 as a reference. I have been pleasantly surprised that my son’s school (Qld, Australia) included him into the special needs program even before we had the official diagnosis (done by a school psy) confirmed and certified by a paediatrician. They did tell me though, that while they could unburocratically do this, their future funding depended on actual diagnosis that translated into needs covered with the services they were already providing us with.
    Now I have just checked and we did have another confirmation appointment (after a year, the school needed that) with the paediatrician on May 10 (!). He confirmed my son to have Asperger’s (!!). In the school files though, from the beginning, he was always marked as having ASD.
    I think it depends a LOT if an organisation has a genuine interest to actually help with obvious problems whether or not they will read the DSM5, the changes or their own regulations about it in your favour or not. When understaffed and insufficiently funded schools will start to bend it so that LESS kids (or adults) are beneficiaries of the system by pointing to the changes of the DSM-5, it is understandable that parents see the problem there, but I fully agree with you that this is not the case.

  5. confessionsfromhh6 says:

    I think it all comes down to staffing and funding of services. You can have the diagnosis and demonstrate need, but still have school or health insurance deny a needed service or therapy even when the proof of need and diagnosis are hitting them over the head like a sledge hammer.

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