Saturday, February 20, 2010

Aspergers versus Autism - The Great Label Debate (Part 1)

Unless you've been hiding under a rock lately, you're probably aware that the DSM V due out in May 2013 but under review now, is considering dropping the "Aspergers" label and simply lumping it under the general category of Autism. There's naturally a great deal of online debate about this decision.

I've been (mostly) holding my tongue because I'm not entirely certain how I feel about the change. I can see positives and negatives on both sides and in a direct contradiction of my non-empathetic label, I can appreciate and empathise with several points of view. I've got three main aims in this post,

1. To talk about the manual and the change.
2. To provide some points of view
3. To discover (and discuss) my feelings on the merge.

I suspect that I won't be able to cover all this in a single post. If not, they'll be covered in a sequel post.

A Bit about the DSM
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is essentially the "textbook" for diagnosing mental disorders. It includes all manner of disorders, ranging from Alzheimers and Autism all the way through to Voyerism. There doesn't seem to be anything starting with "Z". The list of "disorders" is here. It's quite interesting.

Over the years, the manual has had its fair share of controversy including, famously, the removal of "Homosexuality" as a disorder in 1974 following quite a bit of criticism from activists. Strangely enough, it's never generated quite the debate that the merging of Aspergers and autism seems to be causing.

It's interesting to note that the changes being discussed are to DSM V (The fifth iteration). The manual has only been around since 1952 with new versions released in 1968, 1980 and 1994. There have been few minor revisions between versions - in fact, the DSM-IV only has a single TR (Text Revision) version dated 2000. It didn't make any major changes to specific criteria for diagnosis but simply changed a few codes and provided additional information.

My point here being that we're now talking about a medical text which is effectively sixteen years old.

16 Years of Change
A lot has changed in 16 years in terms of diagnosis, intervention and social integration but arguably the biggest change of all has been ... the internet.

Sure, the internet isn't a mental condition (although some may care to differ). What it does do though is provide an amazing forum of feedback which was never available to previous "authors" of the manual. Of course, everyone knows that you can't trust everything you read on the internet and just as we have difficulty distinguishing between real professionals and "quacks", readers on the internet have no idea whether or not people really have the conditions they describe or whether they're simply "self-diagnosed" or, incorrectly diagnosed.

There are two major types of places on the internet where recent changes have driven "social reformations" in terms of the perception of aspergers and autism. The first of these are forums, such as WrongPlanet, Aspies for Freedom, Asperger and ASD UK Online Forum, Asperger Services Australia).

There are also other types of forums, specifically to do with medicine, psychology, parenting and special needs which have large sections dealing with aspergers. (examples include; Natural Parenting, MedHelp, PsychForums).

All of these forums are collecting and concentrating the experiences of groups of individuals of all ages with aspergers, parents of children with aspergers, teachers with special needs asperger pupils and people involved in various support services for people with aspergers.

In the days before such forums, doctors who were handing out diagnoses and advice might find that only a very small percentage of their interactions with special needs people were with aspies. Since appointments are often quite far apart, it's unlikely that many comparisons between the same individual over time were possible - and certainly, comparisons with others on the spectrum only occurred in research, not in day-to-day practice.

Now, the same doctors can spend an hour per day reading through these forums and get the concentrated feedback and experiences of hundreds of people on the spectrum at once. More importantly, parents who regularly read these forums are likely to find themselves considerably better informed than at least the doctors of the recent past - perhaps even, the doctors of today (depending on how much reading and specialization they do).

The other major internet influence on the aspergers knowledge is blogs, like this one and like many others (Try a google search).

Unlike Forums which collect and concentrate the experiences of large numbers of people, blogs tend to collect and concentrate the experiences of an individual over time. Of course, one of the best things about blogs is that the comments against specific entries provide a great "reality check". After all, if the majority of the commenter's disagree with something then it's likely that it's not part of the aspergers condition but results from either a comorbid, a environmental factor or something else entirely.

The other thing about blogs is that you can quickly sort out the honest ones from those which carry a heavy bias. After all, if you find false or biased information on a blog, you can always stop "following" it.

The main point I'm trying to raise here is that due to the internet, discussion on this revision of the manual is reaching a far wider audience than ever before and it's this which is driving the controversy.

Moving On.
In my next post, I'll be covering the different points of view and examining the reasoning behind them.


The Rambling Taoist said...

I had no idea there was any discussion on this. I look forward to Parts II & III.

Laura said...

Great post! Great explantion. I am a mother of an Aspie and a nurse. I am also trying to figure out where I stand on this. The internet and the ability to get a bigger veiw about Aspergers has really changed my perceeption and emotions about it since my son was diagnosed 1 year ago.

budgenator said...

Quite simply most Aspies and Auties recognize far too many similarities to each other to not except the definitions as being different in only the most subtle manner. I think the only things we are leery of is how it will the stigmatization of the diagnosis or how it will effect the disability payments to the more severely effected.

RAnn said...

I'd like to invite you to check out my blog this week as we discuss autism. I'll have a different post every day next week.

Caitlin Wray said...

Gavin, this is a remarkable blog. My 6 year old son was diagnosed with SPD last fall and with Aspergers/Giftedness just a week ago. I have been reading your posts and there is so much eloquent and useful information here, that I find myself wishing I could just download it all into my brain! I am also struggling to fully comprehend the ramifications of this DSM change for my son as he grows up. As a parent I deeply appreciate your first-hand insights, and I look forward to your upcoming posts.

I have been chronicling our experiences at, and referenced your post on Intolerance a few days ago. Do stop by if have a spare moment :)

Rachel Cohen-Rottenberg said...

Gavin, I hadn't realized that the current version of the DSM is essentially 16 years old. Time for some updating, I think. As you know, I'm all for the proposed revisions, despite (and perhaps because of) the fact that they will force people diagnosed with AS (like me) to confront the stigma of autism without hiding behind the AS label.

I wish I were as optimistic as you are about professionals learning from us bloggers. Personally, I think that the medical/scientific community is quite threatened by autistic adults because we are able to describe our experiences and directly contradict the "accepted" wisdom. It's ironic that people everywhere are trying to get autistic children to speak, but ignoring autistic adults who can advocate for themselves.