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.