Publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is still three years away in May 2013 – but the proposed draft revisions were released for public comment on Friday. It has hardly been a well-kept secret that the 600-or-so reviewers from around the globe would propose that Asperger’s syndrome be eliminated as a separate disorder.
Instead, it is proposed that Asperger’s will be placed into a general category known as Autism Spectrum Disorders. Clinicians will then rate the severity of clinical presentation of ASD as severe, moderate or mild – with the assumption that “the condition previously known as Asperger’s” will typically will typically present as “mild autism”.
Asperger’s syndrome was first listed separately in DSM-IV in 1994. It was then described as a mild form of autism involving social and physical awkwardness, sometimes but not always combined with verbal precocity and intense but limited learning interests.
On the face of it, this change could be dismissed as mere semantics – but of course the implications are far greater than a simple tweak in an academic categorization. It has not been surprising to see the avalanche of opinion on this proposed change in the few days since the release of the proposed revisions.
The comments seem to fall into five broad camps:
Many in the Asperger’s community who are advocating for preservation of the Asperger’s identity. There is a large degree of pride amongst adults with Asperger’s syndrome. And why not, as their company is rather esteemed - sharing traits with the likes of Albert Einstein, Isaac Newton, Benjamin Franklin, Leonardo da Vinci, Vincent van Gogh, Beethoven – and perhaps Bill Gates and Henry Ford. The opinion from these groups over the past few days seems rather vocal against an absorbtion of their Asperger’s identity into the wider autism group.
Those parents who recognise that a diagnosis of autism is more likely to result in funding and resources for their child. While some folk are advocating against the proposed changes, many parents recognize that formal inclusion of Asperger’s as an Autism Spectrum Disorder could lead to increased assistance for children with Asperger’s syndrome. Asperger’s syndrome is not recognized in the current DSM-IV-R as a form of autism.
Those professionals who agree that Asperger’s is indeed a subset of Autism Spectrum Disorders and that it logically belongs as part of that continuum. Presumably the majority of the 600 or so reviewers from around the world who have been working on revising the current DSM-IV-R fall into this camp.
Those who argue that the weight of existing convention shouldn’t be swept aside lightly. After all, there are mountains of books, literature and resources targeted to Asperger’s syndrome which serve parents, professionals, teachers and adults with Asperger’s very well indeed. Much of this may be made obsolete or less accessible by abolishing a separate DSM diagnosis for Asperger’s. Any shift in status could cause distress and confusion for those who have received an Asperger’s diagnosis – and negatively impact on their ability to obtain services.
Those who argue that Asperger’s syndrome and autism may well be biologically different conditions. This camp would argue that the scientific world has not had enough time to test for these differences and that a removal of Asperger’s syndrome as a separate diagnosable condition would discourage research which would help gain a clear understanding of the potential differences and similarities. Professor Simon Baron-Cohen (Director of the Autism Research Centre, University of Cambridge, United Kingdom) has made comments which appear to include him in this camp.
The closing date for comments on the proposed changes is 20 May 2010. It will be interesting to see which of the above bodies of thought prevail, and whether these proposed changes to the Asperger’s diagnosis survive to the final version of the DSM-V due for release in May 2013. If you would like to submit a formal comment to the DSM-V Workgroups, the official DSM-V development site is at http://www.dsm5.org
Here’s hoping that the final decision is rational and evidence-based rather than a response to lobbying or political pressure. Feel free to leave your own comments right here.
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I am an adult who would currently have an Aspergers Dx. I am VERY happy that the ASD dx is Subsuming the Aspergers Dx. There is no reason that people wouldn’t keep calling “ASD, Mild in severity” “Asperger’s” outside the medical community after this- this is just the Diagnostic Manual, it is not what uniformly defines the way that our culture as a whole addresses a particular disability. For example, many people still use the term “Manic Depressive” for those with Bipolar Disorder, even though that is not the Valid diagnostic language set down by the DSM IV.
As for me, when I introduce myself to people who will need to know my disability such as the owner of the store I use regularly, my neighbors who check in on me, and those who I volunteer with, I say “I am Mildly Autistic. . .” followed by what that will mean in that circumstance. For example, the lady at the store knows that if I take a long time wandering around the store without picking anything up, I might be having an overwhelming day and might need my focus brought back to the purpose of my visit, or even help figuring out what to get.
I do not use the term Aspergers, in part because I feel like it is un-necessarily divisionary, potentially bigoted, and quite frankly I find it demeaning of the personhood of my friends who are less likely to “pass” as NT, as well as of myself on the days when I CANNOT pass. Also, because the PR work some “aspies” have done means that people assume that I will exhibit the same way as the famous ones do.
When I did use Aspergers, People assumed I was good at math or science- But I have Dyscalclia! I even got the “computer Programmer” thing tossed at me, and while I admire the programming of others, my own issues make it exceedingly difficult to generate original code. It does not occur to them that I could have a special interest in something like Anthropology, or in the histories of Oppressed people, or that just as there are certain skill sets learned by those with other special interests like math and science, I have learned skill sets relevant to my own special interests.
They expect to see social Awkwardness, and maybe hyper focus and clumsiness. They do not seem to expect Melt downs, or abnormal structure of sentences on my bad days, or that I might say something that sounds poetic to the NT ear but is actually a rather literal description of what I see in my head.
To me, the PR done in the name of Aspergers has separated us out from what the reality is for most of us, and from who we are on our bad days, and even subliminating our actual NEEDS to the point where in places like CA, USA, whole swathes of the population cannot get NEEDED services because they have an Aspergers Dx.
Right now, The backlash seems to come from two places- fear that it’s an elimination rather than subsumption of Aspergers, or plain old Pride. The first makes sense- the language is vague enough that unless you read the notes/official commentary, you might be scared that it is stricter than the old criteria, and that you might loose the services you were lucky enough to get. not technically accurate, but could in practice happen, even though those with Aspergers and PDD-NOS are, in the literature and commentary, by default a part of the new ASD criteria.
The second- Pride- is shameful, and the rhetoric from these proponents smack of ableism.
Having a 23 year-old son who has Asperger’s, I was dismayed to see that they may not continue to classify Asperger’s separately. It was bad enough that my son was on an IEP for Autism from 7th grade until graduation, which made him even harder to teach. He is brilliant in certain areas, yet has the lack of social skills which caused so many of his problems in school and today. Even in a therapeutic school he was often misunderstood and labelled by some as a trouble maker. Even “they” did not understand Asperger’s, and were frustrated by his rather “mature” humor and unwillingness to participate much of the time. They would often call me, to talk him through a “melt-down”.
Asperger’s needs to be better understood & changing the DSM-V will hinder that. Our Asperger’s children need to be accepted and understood, not made to feel like they are “Bad” for their “Misbehavior”. Through it all I can honestly say that having Matt has taught me so much about patience and non-judgement, and compassion. At age 23 he lives at home and struggles to fit into society’s mold.
My prayer is that someday he will see himself as I do an amazingly strong, intelligent, good, human being.
@boniru comment via twitter
Autism and asbergers are mislabeled as diagnoses. They are all SYMPTOMS of Temporal Lobe Epilepsy:
poppetree.blogspot.com/2010/01/imagin-study-reveals-hidden-epileptic.html
This is a checklist of the symptoms of TLE: poppetree.blogspot.com/2010/01/temporal-lobe-epilepsy.html. For a diagnosis you need a minimum of ten symptoms
As an Aspie individual, I completely agree with Savannah’s comments. I hope that by being formally included into the Autistic fold not only will there be more support for programs and funding for those of us who do not technically fall under the general concept of ‘disabled’, but that we can also help to widen the public’s awareness of autism from a perspective of advocacy (both adult and child-centered) and not shame.
I believe the Asperger’s dx should be maintained but put under the autism umbrella.
My son is an aspie, and his abilities are very different from even someone dx’d as hfa.
Tighter diagnostic criteria is what is needed.
Asperger’s isn’t meant to be a label of pride or expectation, rather a label of distinction.
It sounds like what you had was more an issue of your son’s IEP NOT being INDIVIDUALIZED! That is the key element for an IEP to work, and too many times parents are pushed into short cuts that are NOT individualized by child, but by Dx. Because schools pressure parents to go through their one-size-fits-all-with-that-dx plans, VERY FEW kids actually benefit.
To all parents whose kids are still in school: remember! IEP means INDIVIDUALIZED education program! DO NOT let a school pressure you into just doing what they want if something better can be done, or if it ISN’T working for your child. If you need help standing up to the schools, you can usually find an advocate in your area to help you. (My mother was involved in this sort of advocacy, and still is.) Here are some sites to get you started:
http://www.theparentaladvocate.com/
http://wrightslaw.com/
http://www.ehow.com/how_2062558_advocate-childs-iep-meeting.html
If any one tells you that so and so can’t attend a meeting, ask why. ANYONE can be invited by the child or parent. if they tell you differently (without something like “that person has a Sex offense history and thus is not allowed to come withing x of the school!”) they are lying, and possibly breaking the law.
Who cares…it’s just another label
Is it a stretch to wonder why both sides can’t be satisfied? A hyphen would solve the dilemma neatly…i.e. Aspergers- Mild Autism..
I really have never understood why there’s a difference in diagnosis between high-functioning autism and Asperger’s. I could show exactly the same behaviours that I do, and something in my past could show the difference. The main reason I don’t refer to myself as autistic is that I don’t want to cause peopel to expect a similiarly high level of functioning from everyone on the spectrum. There are days when I can completely understand the people who do not/cannot communcate with others.
I think it’s odd to complain that they (AS and autism) might be caused by completely different things, when we don’t even know for sure that all autism has the same cause. I know my mother prefers Asperger’s as a diagnosis (after I was diagnosed we have realised that she likely has Asperger’s too), because back when she was growing up autism was recognised only as a really severe disability, and so she has negative connotations associated with “autism”.