Thursday, February 25, 2010

Aspergers versus Autism - The Great Label Debate (Part 3: The case AGAINST)

Last time I looked at and played "devil's advocate" to, the argument to absorb the Aspergers label into the wider Autism label.

In this post, I want to look at the case "against".

The Autism label is Tainted
This is by far the most "vocal" argument against the merge. There's certainly an element of truth to it. I don't think that anyone who really knows autism will try to suggest that the word isn't tainted.

Stop anyone on the street and ask them what "autism" is. You'll get instant recognition. They'll tell you about children who can't function without adult helpers and if adults are mentioned at all, they'll tend to be the "diapered" and "institutionalised" variety. Usually, people on the street don't even think about autistic adults. It's like the "problem" simply goes away.

If you try to suggest that there are adults on the spectrum who don't live in institutions, you'll receive a blank stare and then muttered assent; "oh yeah, like rain man."

Thanks hollywood, thanks autism speaks. You've managed to confuse the world so that an image of 5% of the least able members of the autistic community represents the entire community. The word is most certainly "tainted".

On the other hand, if you ask people about Aspergers, particularly if you don't say "syndrome", you get blank looks and mostly a lack of recognition. If anyone does recognize it, they'll usually respond with words like "quirky", "geek" or "nerd". Believe it or not, this is considered to be a positive stereotype and I suppose that, compared to the stigma of "autism", it probably is.

I read somewhere on a blog of someone claiming Aspergers as a "successful brand". I feel that treating our syndromes as brands is probably carrying recognition a bit too far but I'll leave that for the commenter's to dissect.

The question here isn't whether or not the word "autism" is tainted but rather whether the solution is to abandon it in favour of a new label which while not necessarily "tainted" is certainly beginning to associate with a particular stereotype.

I have two main thoughts on the tainted argument;

  1. Will we feel the need to abandon this new label in another 20 years when it too becomes "tainted"?

  2. Assuming that we "cream off" the diagnosed aspies, what happens to the remainder of the autism community? What about the high functioning autistics - are we simply going to abandon them even though there's almost no difference between "our diagnosis" and theirs.

The Elitist Attitude
This is the "against" camp's answer to the political correctness garbage of the "for" camp - and in my opinion, it's just as useless. In this case, it refers to a very vocal minority group who don't want to be in the same category as people with very severe autism.

It's similar to the "tainted" theory (at first glance, it seems the same) except that in this case the people aren't so concerned with the public predjudice as their own. They're not worried about what other people think. They're worried about what they think about themselves.

In this case, the whole argument is moot because it's clear that these people will continue to refer to themselves as "aspies" regardless of what DSM V says.

One last point on this argument. It's not just aspies. I've actually read some posts from the parents of children with severe autism where they're complaining about high functioning people "stealing" their funding and drowning out their pleas with "high-functioning babble". I'm not sure that such an attitude is warranted but it certainly harks back to one of my earlier points about making sure that all voices on the spectrum are heard - not just ours.

The Strain on Services (and Removal of Services)
The possibility of placing a strain on services is very real. Right now, in Australia, there is greater support for High Functioning Autism than there is for Aspergers even though they are considered to be "clinically identical" once early intervention has ironed out the speech delays.

The "strained services" argument suggests that if the same amount of money is spent on services for autism but the playing field is leveled in terms of requirements, then those who are currently receiving less funding will receive more. Of course, the money has to come from somewhere, so it makes sense to suggest that those who are receiving more funding now will receive less under the new scheme.

This is the crux of the problem. For the most part, people who are already receiving higher amounts of support generally require greater support. It's true that aspies need more support too but not as desperately as people with Kanner's autism.

Of all of the arguments in the "against" camp, this one is unique because it is not discriminating against the more severely handicapped autistic people but is actually supporting their right to greater services.

The other part of this argument suggests that many people who previously fitted under the banner of aspergers may find themselves no longer on the spectrum - and thus no longer eligible for support. This theory comes from the idea that the boundaries between neurotypicality and autism will be solidified and that some of the diagnostic criteria will be revised.

At this stage, I've seen no evidence to suggest that this is definitely the case but there are some interesting rumors. In any case, it's unlikely that anyone will have their existing "labels" taken off them (they'll just be migrated to the new wording) but it is much more likely that new people who would have received a diagnosis and support under the old system may find themselves "too high functioning" to qualify.

Confusing Changeover Period
The last argument I want to cover is the changeover period. It's another good argument. Not that long ago, one of the major Australian banks had a rebranding exercise. They kept their name but changed their logos, slogans, forms, website and general branch appearance. The whole thing was a massive undertaking which pointlessly squandered a huge amount of money. In the end, most people couldn't see how they could justify the expense.

I'm wondering exactly how much money this changeover will cost in terms of re-branding, retraining and redrafting the rules. I know that the majority of the money spent on this activity wouldn't have gone towards services anyway but I'm willing to bet that somewhere, somehow, service disruptions will eat into support funding.

Consider for example, your local community support services centers. These operate with very limited funds and will need to spend time, money and resources coming to grips with the changes in the DSM. Instead of spending money trying to improve their programs for support, the money will go towards less useful (essentially pedantic) training.

I also wonder exactly how many people will "slip through the cracks" when the labels change? Caitlin added a fascinating comment against my last post which highlighted exactly this problem. Some schools won't accept "autistic" children but will still accept ones with "aspergers". What happens when the label changes? Will the schools make allowances? Probably not.

The Solution?
I've thought long and hard about the solution to the problem and I've come to the conclusion that neither camp is correct. I'll save my opinions on this for another post though.


xine said...

I have a feeling that "Asperger's" will remain the primary label for people who used to/already have/would recieve that as their diagnosis. The only thing I really worry about coming out of this is the further implemenation of ultra cookie-cutter ABA programs for kids who would benefit from a less restrictive, more flexible and "typical" environment. Here in Utah, "higher functioning" ASD kids very often get placed in the same programs as those on the other end of the spectrum, to the benefit of no one.

That said, I'm feeling optimistic about the label change.

Rachel Cohen-Rottenberg said...

Hey, I have a great idea! Let's take Asperger's and autism out of the Diagnostic and Statistical Manual of Mental Disorders altogether. They're not mental disorders, so logic dictates that they be removed. And of course, as we all know, logic always wins when it comes to science, right? ;-)

Anonymous said...

I think that if you fold such a wide range of behaviors into one label, you destroy the value of the label. It's like dividing the world into the blind and the sighted. (I'm only sighted if I wear my glasses, so what would that make me?)

Also, I think if you've got just the one label, you'll scare away parents whose kids are of the high-functioning type. I mean, if a parent has a high-functioning kid who gets along pretty well most of the time, will she want to have him tested for autism? No way. Too much stigma. She'll say, You're crazy to suggest it! and the kid will go unaided.

-- Jennifer

Leslie said...

Hi Gavin,

A couple of weeks ago, one of my friends posted a link to the Aspie Quiz with her results on her LiveJournal and I decided to take the quiz myself, not even knowing what Aspergers was. I had some vague idea that it was similar to Tourettes.

Much to my surprise, my results came back in the 132AS/71NT. That was even with me not answering several questions, as I didn't understand what they meant, or were things I hadn't thought about before and didn't know how to answer.

I’ve spent the past couple of weeks voraciously reading everything I could find online. A whole lot of stuff from my past makes sense now; I have no doubt that I am an aspie.
I am a 40 year old woman living in Dallas, Texas, USA. I am married with no kids. I am an administrative assistant, a belly dancer, and a pagan. My special interests are belly dance, ancient Egypt, and historical costume. And I am an aspie. 

I still have a lot of questions, and I hope you can help me with a few here and there. Would it be better to post comments on your blog entries pertaining to my questions, or just newer posts?

Nice to meet you, and thank you for this blog!

Gavin Bollard said...

Hi Leslie,

Welcome to the blog.

It probably does make a lot of sense to post against the most pertinent topics since people often "follow" particular topics.

In any case, where things are direct questions, I'll usually get involved though sometimes I miss them because I've got a busy schedule.

If you do need to contact me directly, you can do so via the form.

Anonymous said...

Leslie -- thank you for that link to the Aspie Quiz. I am self-diagnosed after reading Tony Attwood's books. At 55, it is a great relief to understand why I feel the way I do and why my behaviors always have been so odd. But, without knowing what my problem was, I set about to correct a few things myself. Gavin, thank you for your blog, too. You have some great information here.

Miguel Palacio said...

Autism 2.0. New and improved! Now with Aspergers and NOS. Act now and be reclassified while supplies last! -or at least until DSM VI.

If you call in the next 20 minutes or become patient number 99 you will be diagnosed with 2 other co-morbid conditions for absolutely free!!

Sinclair C. Maxwell said...

I'm an aspie, I suppose you could say (my mum prefers the term over "Autistic"). However, since I was diagnosed after the DSM change and since although I'm considered "high functioning" (I actually really hate functioning labels) there are many things in not able to do that many other aspies can like driving and working outside of my home, etc, I tell people simply that I am Autistic. I have meltdowns, at times debilitating anxiety and panic attacks that caused me to leave the last few jobs I had though since coming to work from home it has improved by bounds though only because I've removed myself from the situation that caused the stress rather than working to solve the problem. I'm having a service dog trained for me currently though and it's my hope that one day I'll be able to go to a movie or the mall by myself without stress and anxiety. :) I guess my point is that even though I have other Autie friends who hold tight to the Aspergers label despite the merger, I personally prefer to say, "I'm Autistic and I'm not ashamed or embarrassed to say so. I'm proud of who I am even though it may not be the standard and even though it may be hard at times. I'm awesome as I am!" :)