Scientists, or Service Providers; Critiquing the Choice of Targets in the Attacks on DSM-5 Autism Changes

Today, I found myself reading yet another attack on the scientists in charge of the changes to the criteria for autism, that are due to come in with the DSM-5. And again, the attacks were made on the scientists because of the consequences of the changes to the services received by autistics. Specifically, the possibility that fewer people with a current diagnosis of autism, would be entitled to much-needed services that are funded by the government and insurance companies.

There are various reasons one might attack the new criteria (such as not liking the removal of Aspergers, or thinking the severity criteria is flawed), but it is this particular and highly popular line of attack – targeting DSM scientists because of consequent changes to services – that I want to critique in this post.

It’s easy to target the scientists, because they are the ones creating the change; the service funding providers are just going about business-as-usual. So when you see an upsetting change coming, you don’t naturally aim at those maintaining the status quo, you target those who are rocking the boat.

But you must always ask why the boat is being rocked: What is the purported and actual aims of the scientists? At its core, they are trying to improve and clarify this thing called “autism.” Theirs is a search for accuracy and truth. Which is why attacks on whether they are improving the accuracy of the diagnosis, are always going to be relevant. Yes, the decisions of such scientists can and will impact on service provision, and people might legitimately expect that to be part of their reasoning and decision-making (and my understanding is that they are aware of their role in this). But they are not the actual service funding providers, and the impact of the changes to the DSM-5 go much wider than the country of origin and their specific funding issues. The changes to the DSM-5 will impact on and are relevant to a world-wide audience, they are meant to reflect the universal truths of autism, not some sort of American-only version; autism should look the same in New Zealand as it does in America.

Even if I was an American, I wouldn’t be fighting the scientists to change their criteria based on an argument about service funding provision; I would be targeting the service providers themselves. For a couple of stark reasons as least: First off, services and funding for those services should be supplied on objective need, regardless of confirmed diagnosis. This is particularly true for a condition like autism where a blood test or brain scan (or whatever) is not yet available to rule-out or rule-in a diagnosis. The diagnosis – and the need for services – depends on the symptoms and their severity. A diagnosis of autism from one clinic may not have been granted from another, and a diagnosis of “autism” doesn’t itself (currently) explain the level of need of the individual: There is clearly a need to respond to the individual, taking the confirmed diagnosis into account where there is one (since a diagnosis in this case is like a short-cut to figuring out how to best help the child, it is not a box ticked to then be able to get a cure).

Of course this is more difficult for an insurance company or government to respond to than a simple tick-the-box diagnosis approach. More difficult, but not impossible. More difficult, but best (in my opinion). The fact is autism is such a diverse and complicated condition, that to truly respond to an individual with autism, requires a somewhat diverse and complicated system.

If there is a problem with the service provision, then the people who should be in the public’s firing line are those who provide and fund the services, for using inaccurate or unhelpful approaches to who should receive help. The service providers are not driven by some higher ideal of a search for universal truths, they choose how to respond to truths. These companies and governments are run by people who make decisions or laws; people who can be (at least in theory!) reasoned with and influenced. It may seem easier to publicly attack a group of scientists than a seemingly faceless company or government organisation, but it is still people you are dealing with, and only one of those groups is motivated by a search for objective and accurate truths. Why attack those with the pure(r) motives?

There are other problems with attacking the DSM scientists instead of targeting the service providers too. One of the common outcries is that the autism criteria changes will move those at the higher functioning end of the spectrum (such as Aspergers, or PDD-NOS), out of the autism spectrum altogether, and therefore they won’t be able to access the services provided for those with an autism diagnosis. However, my understanding is that this “high functioning” group of people already classically struggle to receive any or appropriate services. So they’d just continue to not receive adequate services, rather than necessarily be in a worse off position.

That’s if it’s true that they won’t fit the new autism criteria in the first place. Most parents haven’t actually looked at the new criteria (a fair chunk don’t even know the changes are on the way, obviously that doesn’t include us bloggers). In so many news items and posts I see people using the very worst alarmist figures about who will drop off the spectrum, completely ignoring and not citing the far more conservative estimates that are also out there.

Even accepting that some will inevitably “fall off” the spectrum, one has to surely take into account the creation of new diagnostic criteria which are likely to capture those who were once at the higher end of the spectrum, such as Social Communication Disorder. The fact that we don’t know how the service providers will respond to this new category – or if they will respond at all – is not the fault of the DSM scientists. Again, that is the service and funding providers who should be targeted. I am yet to read a single piece asking for the service providers to publicly respond to what services and funding they are contemplating bringing in, in response to that new diagnostic category. Perhaps the service providers are sitting on their hands, waiting to see what the DSM-5 will actually be. But that is not a reason for the public to also sit on its hands: For the same reason that parents are attacking the DSM scientists, they should be attacking the service providers (only more so); the parents are concerned about uncertainty and what services will remain available for their child. Doesn’t it make sense to shout these concerns at those who must react (and must do so quickly) to the changes once they take place?

It strikes me that the problems the public seems most concerned about, are problems already existing in the service provision sector: Problems with the amount of funding and services available, and the lack of flexibility and responsiveness of the existing system. It makes little sense to argue for a change in “reality” (the effort to figure out what autism is and what autism isn’t), instead of arguing for a change in the responses to that reality.

I’m obviously not as familiar with the system in America (I only know what I have read over the years in news pieces and posts), as I am with that in New Zealand. But it seems to me that the changes need not scare the pants off New Zealanders, since our system doesn’t require a confirmed diagnosis at every point, to be able to access much-needed services (though of course it can and does help). If there are things that need changing here in New Zealand, it is in the overall funding and provision of services as they already exist. A change in the criteria for autism under the DSM-5 won’t make that better or worse; the underlying problem will remain.

I would like to think all the public outcry over how this will impact on services, will not influence those who make decisions about the criteria for autism, though I know full well that they are aware of and also concerned about the impact on services too. The search to accurately define and identify autism should not just be a local and time-specific issue (say, “most States in America, in the service provision of the year 2013”). It is bigger than that. It is more important than that. It is about research and understanding, about autism in itself. Of course services and everyday reality of our families, matters, and it is because those service and everyday realities matter, that we should make sure we’re correctly targeting those who are failing us. Don’t accept the status quo, if it screws you over today or will screw you over in 2013: Fight so that no matter how the scientists label your children’s challenges, there will always be adequate and responsive provision to help the individuals that need it most.

***

Some of my other posts on the DSM-5 changes to autism criteria:

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6 Responses to Scientists, or Service Providers; Critiquing the Choice of Targets in the Attacks on DSM-5 Autism Changes

  1. Rachel says:

    The purpose of the DSM is not to accurately define and identify autism (or anything else). The purpose of the DSM is to provide diagnoses for insurance coverage for services. That is why the current revision of the diagnostic markers for autism have to do with the level of services needed, not with the condition itself. There has been no thorough-going attempt to understand and identify what autism is. How can there any such attempt be when the criteria are entirely based upon behaviors, and no adults with autism were involved in the development of the criteria?

    • Rachel, I’m sorry but I take huge issue with your claims here:

      First off, you can’t have autistic adults involved with the development of the criteria, unless you already know they are autistic adults; the criteria takes precedent. And if the function of the changes is to improve the criteria, that may mean many who are already diagnosed as autistic, received an inaccurate diagnosis; it doesn’t make sense to take an error group and use that as the basis for change. Secondly, the DSM is meant to be a scientific endeavour, not a social document about what people wish autism was or wasn’t.

      As to your comment about its purpose being solely for insurance, this is incorrect (as I understand it, and as they state it). That is not how they describe their goal in creating and adjusting the DSM-5, and it doesn’t nearly capture the ways the DSM is used by the scientific and worldwide community. It is only one piece of a much larger whole.

      “There has been no thorough-going attempt to understand and identify what autism is.” Surely a huge over-statement. The team working on the DSM-5 have spent years trying to do just that, both in regards to the DSM-5 and in their own work as clinicians and scientists.

      Clearly your comment is highly political, and intended to be such – and I understand some of the broader points you’re trying to make – but you’ve over-stated your points, to the point of largely undercutting your own arguments.

      I’d also add that you seem to have ignored the main themes of my post, almost entirely: That the true target should be the service providers, and that the impact and aims of the DSM-5 go – intentionally and actually – far beyond “America in 2013.”

  2. amanda cabrera says:

    In america it also has to do with obamacare. Which has already mandates aba should be covered. But again I think there are exceptions.

    • Hi Amanda, yes, I remember reading recently about that momentous change for the better. I expect the DSM-5 impacts on many levels (sometimes every level..?) of the government and health system, at least where the DSM is seen as a – or the – authoritative guide to who has what condition (which would be particularly true of the US, but the DSM is also treated as a key reference here in NZ and many other countries). Though of course the DSM doesn’t state what should be done about each condition, that is outside of its scope. Maybe you can tell me if the ABA change is only for those with a confirmed autism diagnosis, or is it broader than that – does it respond to an individual child’s challenges (regardless of confirmed diagnosis)? (Or perhaps someone else knows; I would like to know more than I do about how these sorts of specific services are alloted, both in the States and by governments and insurance providers elsewhere).

  3. RA Jensen says:

    Your implication that it is parent groups, internet bloggers and special interest groups who are ‘attacking’ DSM5 scientists for the DSM5 proposal is not completly accurate. These ‘attacks’ are also coming from autism researchers whoses credentials are far superior to any member of the DSM5 working group for autism. They include Fred Volkmar who resigned from the DSM5 working group in protest to the direction of the DSM5 working groups propsalsn. Volkmar is the current editor of of the Journal of Autism and Developmental Disorders. Sir Michael Michael Rutter who chairs the ICD11 working group for autism and is a retired past editor of the Journal of Autism and Developmental Disorders. In the past the working groups for autism in DSM-IV and ICD-10 have worked closely together to insure that these two worldwide accepted diagnostic manuals are in agreement with diagnostic criteria for autism. There is a disagreement between the DSM5 working group and the ICD11 working group chaired by Sir Michael Rutter who disagrees with the concepts and methodolgy contained in the DSM5 proposal.

    You can follow the details on the SFARI blog in an interview Eric Fombonne on autism prevelance rates and in the comments section the impact of DSM5 may have with respect to diagnostic losses for Autistic Disorder, PDD/NOS and Asperger syndrome here:

    http://sfari.org/news-and-opinion/q-a/2012/q-a-with-eric-fombonne-are-autisms-rising-rates-real

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