<p><a href=“http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1[/url]”>http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1</a></p>
<p>interesting limitation in the spectrum</p>
<p>"The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”</p>
<p>The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.</p>
<p>The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”</p>
<p>Experts working for the Psychiatric Association on the manual’s new definition — a group from which Dr. Volkmar resigned early on — strongly disagree about the proposed changes’ impact. “I don’t know how they’re getting those numbers,” Catherine Lord, a member of the task force working on the diagnosis, said about Dr. Volkmar’s report. "</p>
<p>In my opinion, this is one of the thorniest issues in cost containment in medicine; “spectrum” diagnosis, which are very prevalent within mental health/psychiatry. Does anyone know how other countries handle this, with regard to single payors or national health care?</p>
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<p>I’m not taking a position on whether the changes are justified, but they wouldn’t be nipping anything on the bud. This is not a drug, a vaccine, or any kind of cure. Nobody who now has Aspergers, but who under the new system wouldn’t have any diagnosis, would get better. They’d still have every single problem they have now. They’d still have difficulty functioning in society. They’d be just the same, but with no diagnosis. Maybe the changes would help some people, but they certainly wouldn’t help most Aspies.</p>
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Yes, I agree with this sentiment completely. Problems don’t just disappear if you decide to look the other way – they’re still there, acknowledged or not, and I would imagine Dr. Volkmar is well aware of that. I’m actually wondering if he wasn’t misquoted in this article. I have a hard time imagining him saying something like this…</p>
<p>As somebody who’s been diagnosed with an autism spectrum disorder and worked professionally in the field (with several members of the DSM V task force, fwiw), I’ve thought about this a fair amount. From my perspective, it definitely seemed like autism spectrum disorders were not only over-diagnosed, but commonly misdiagnosed (i.e. children presenting with mild social anxiety symptoms being diagnosed with ASD, despite not having a history of language delay, unusually intense interests, resistance to change, etc.). </p>
<p>Luckily, with most of the cases I believed to be misdiagnoses, there were plenty of services available, and it was not a case of one child “taking a spot” from another. I think it would definitely be harder to justify in a different environment, where available resources would likely be much more limited. Nobody wants to really say that one child is more “deserving” of treatment than another, but often, the limited resources do necessitate this sort of prioritizing. That’s where it seems to get sticky. Nobody has a crystal ball, and it’s hard to say with certainty that one individual will benefit more from treatment than another. Diagnoses seem to come into play most prominently here. With a lot of disorders, the diagnoses help us sort out common patterns of symptoms, and predict outcomes with a little more accuracy. </p>
<p>The issue, as I see it, however, is that the diagnoses we have today aren’t really all that helpful. There was a fascinating study I saw a few years ago (don’t have it with me, but will see if I can dig it up tomorrow), which I thought really illustrated the point very clearly. In the study, the researchers used a standardized questionnaire (ADI, I believe) to compare symptoms of the research subjects and the diagnoses they received. Not exactly a novel research idea, but the results were quite interesting. What looked like Asperger’s in one part of the country was diagnosed as Autistic Disorder or PDD-NOS in another, and vice versa. There appeared to be very little consistency in diagnoses when comparing from site to site, and sometimes even within the sites themselves. </p>
<p>Naturally, this high amount of variability leads to very heterogeneous groups. Without a necessary level of commonality, it becomes very difficult to form any conclusions about the subset of individuals within each group, and, in my experience, this had led many clinicians to not pay much attention to the diagnostic categories very much at all anymore.</p>
<p>What seems to be much more popular now is a whole person approach, where we focus more on individual symptoms, rather than labels. Instead of trying to fit each person into a specific category to explain all symptoms, we can recognize that such uniformity is unlikely among individuals. </p>
<p>What seems more likely, however, is that all individuals with autism will have at least a few common deficits (i.e. social reciprocity, nonverbal communication, etc.). Ideally, with these common deficits clearly established and defined, we can sort out those who clearly have an autism spectrum disorder from other look-alike disorders (ADHD, for instance). </p>
<p>And, from there, we can add clinically significant and meaningful descriptors to identify more homogeneous sub-groups. What seems most powerful about this (to me, at least) is the realization that people can belong to more than one diagnostic group. Instead of focusing on vague diagnoses like Asperger’s vs Autistic Disorder, we can focus on specific symptoms like sensory sensitivities, language delay, etc. </p>
<p>This approach reminds me a lot about how we can now “tag” documents, pictures, emails, etc. rather than sorting them into discrete folders. When sorting into static categories / folders, the folders have to be reasonably specific (so as to limit the amount of files you need to sort through) and clear (so that you know in which folder to start looking for the file). If you make them too specific or unclear, you’ll probably have to look through multiple folders to find what you need. And, if you want to see only files created by your boss? You probably have to sort through all of the folders and files, if you didn’t choose to categorize by author… kind of a pain!</p>
<p>Link about the current inconsistencies with regard to autism diagnoses: [Autism</a> tests struggle to balance accuracy and speed ? SFARI](<a href=“http://sfari.org/news-and-opinion/news/2011/autism-tests-struggle-to-balance-accuracy-and-speed]Autism”>Autism tests struggle to balance accuracy and speed | Spectrum | Autism Research News)</p>
<p>I think it’s all about cost containment. The financially strapped public schools are desparate to get kids out of special services. My son was diagnosed in 4th grade and from 6th grade on, we could tell that the purpose of every meeting at school was to get him out of special services. By 9th grade we relented, and I depended on begging each individual teacher to exercise grace.</p>
<p>I don’t see how the DSM revision is about cost containment. The APA isn’t a government agency and doesn’t work for any government. As so helpfully explained above by anon1989, the revision is a genuine attempt to get a better handle on an area where misdiagnosis and over diagnosis are rampant. But yes, the money aspect is important. The NYT article notes that 10% of children are now diagnosed as having a spectrum disorder. The nation can’t afford to provide special services for 10% of the population! There have to be ways to distinguish between those who are seriously disabled by their condition and those who are merely quirky, difficult or socially inept. We don’t all come into this world with the same attributes, and the government can’t be the great equalizer.</p>
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<p>In my experience, you still have to show an academic need for special services. If you are quirky, difficult or socially inept, but do well in school, you don’t get special services that cost money. Many of the accomodations that high functioning kids receive cost nothing.</p>
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<p>Did I miss something??? 10% would truly be an epidemic! The actual statistics are closer to 1/100…</p>
<p>Another reality check: about 90% of adults with high functioning Aspergers are under/unemployed despite the fact that individuals with Aspergers are typically of average to above (sometimes way above) average intelligence… The same individuals who are, apparently, “merely quirky, difficult or socially inept”.</p>
<p>Can you share where those numbers come from?</p>
<p>Those numbers or numbers very similar have frequently been cited in literature on autism. A rate of 1/110 is reported by the Center for Disease Control in the following article from last fall (the first thing I found when I just googled and an article I had never seen before). It also cites a 74% unemployment rate (presumably for all individuals on the spectrum not just Aspergers), and also notes that of those employed about 74% work only part-time. This does not take into account under-employment. Or the current economy.</p>
<p><a href=“http://asperger-employment.org/wp-content/uploads/2011/04/ASTEP-Article-ASN-Fall-2011-1.pdf[/url]”>http://asperger-employment.org/wp-content/uploads/2011/04/ASTEP-Article-ASN-Fall-2011-1.pdf</a></p>
<p>This is from the Times article:</p>
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<p>One in 100 is certainly not 10%! It’s 1%.</p>
<p>^^Thanks for the link! So is the 90 percent unemployment for high functioning folks, or all Autism diagnosis?</p>
<p>Oh, I see; unemployed OR underemployed.</p>
<p>According to a recent ScienceDaily article ([Autism</a> redefined: New diagnostic criteria more restrictive](<a href=“http://www.sciencedaily.com/releases/2012/01/120120184525.htm]Autism”>Autism redefined: New diagnostic criteria more restrictive -- ScienceDaily)), the study by Dr. Volkmar will be published in the April issue of Journal of the American Academy of Child and Adolescent Psychiatry, but may be available online as early as late February… will be interesting to see the full article, for sure!</p>
<p>“I Had Asperger Syndrome. Briefly.”</p>
<p><a href=“Opinion | I Had Asperger Syndrome. Briefly. - The New York Times”>Opinion | I Had Asperger Syndrome. Briefly. - The New York Times;