Monday, February 22, 2010

Aspergers versus Autism - The Great Label Debate (Part 2: The case FOR)

Following on from Part one, which admittedly didn't actually tell you anything about the issue (just provided background), this post will look at some of the arguments for merging the labels. I'll look at "against" in the post after this.

First, I want to clear up a couple of things.

Aspergers *IS* Autism
Aspergers has always been an autism spectrum disorder (ASD). In fact, for a few years, it was popular to refer to it as "Aspergers Autism".

I'm making this point because in reading some of the "negative" posts around the internet, it's become obvious that some people think they're entirely separate conditions.

There have always been people with Aspergers who want to distance themselves from Autism. I can remember struggling with acceptance of the word "Autism" when my son and I first got the label. The reason is simple; we've all be tainted by Hollywood's take on Autism or by our own experiences with severely autistic children. It's very clear that children with Kanner's autism are different in many ways from those with Aspergers Autism. Somehow it seems easier to accept the relatively unheard of label of "Aspergers" than it is to accept "Autism".


PDD NOS *IS* Autism
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) is also Autism. It's a label given to people whom doctors are sure fit on the Autism spectrum but don't really satisfy all the criteria. PDD NOS is also affected by the changes to the DSM. It's probable that if Aspergers is merged with Autism, PDD NOS will be merged too.


Arguments for Merging the Labels

Because the Two are Fundamentally the Same
This is obviously the most important reason. If the two "disorders" are essentially the same, then it follows that the same sorts of intervention and support is required. Pooling the resources should (in theory) generate a lot of centrally administered and positive resources for everyone.

One of the best ways to test this idea is to presume that the word "Aspergers" no longer exists and that the new word is "Autism". A google search for these words makes it clear that Autism provides roughly five times the number of resources - Aspergers gives 2,960,000 hits and Autism, 15,500,000. I had a look at many of the links in the first page of results and found that most of the autism articles which appeared would be equally well suited to aspergers.

I guess this supports the theory.


Political Correctness
No discussion would be complete without at least a mention of the "politically correct" vibe at the heart of so many posts on the topic. Political correctness is a "nice" thing but it never represents reality. You see this kind of reaction in all forms of discrimination. Political correctness corresponds to an ideal. We would like those with more severe forms of autism to feel less discriminated against, so we become "brothers". I don't personally accept this argument but I've seen it quite often lately on blogs and discussion forums. My point here is simply; wishing something does not make it so.

Don't get me wrong. I don't feel superior to people with other forms of autism. Many of these people are everyday heroes and much better people than I. It's hard for me to decide whether joining them will be a vote of support or whether it will simply result in a group of very verbal "auties" drowning out those with lower functioning. After all, isn't that more or less the same effect that so many aspies complain about when it comes to "autism speaks"?


Rubbing off Positives
The rubbing off positives argument suggests that the Aspergers label has benefited from a great deal of positive influence recently. So much so that it's almost become "fashionable" particularly with TV shows like "Bones", "The Big Bang Theory" and "The IT Crowd" promoting "Geek Chic". More recently, aspies have been tackling the theory that we are without empathy with great success. The belief is that by folding Aspergers into Autism, we will be able to bring about positive changes in an area which still carries a stigma.

This idea has merit. If we could channel all of the work that Aspies have been doing recently into Autism, I'm sure that we could "lift the perception" of the label. There are however a few things which need to be taken into consideration.

1. For this to work, the Aspergers activists would need to start promoting "Autism" instead of "Aspergers". It would mean that blogs and forums would need to change names - I've already seen a bit of this happening - and it would have technical ramifications which could cause problems with sites and links for years to come.

2. Classic Autism would need to be preserved; There would need to be a commitment from the "Aspergers" community to ensure that people with other kinds of autism are given an equal voice. This isn't as easy as it sounds because people with severe forms of autism are considerably less vocal than most people with Aspergers. It's dangerously easy to "drown them out".


We ARE disabled
This too is tied up with the whole concept of "Geek Chic". Some of the overwhelmingly positive members of the Aspergers community, probably myself included, often give the impression that Aspergers is not a disability. It's very clear that one's "level of disablement" is impacted by a lot of factors, not just one's label. For example; there are environmental, social and acceptance factors to consider too.

I'm positive that my deafness has prevented me from having some of the worst issues of noise intolerance and distraction. It has also forced me to read more widely than I otherwise would have. Many of my peers with (sometimes) lesser issues have greater difficulty coping with situations than I do. Being freed from one overloading sense seems to have done me a lot of good. I've also grown up in a much more sheltered environment than other people and because of my hearing loss, I got early intervention even though my aspergers was, then undiagnosed.

Those aspies who struggle with their day-to-day lives see the merging of the labels as an opportunity to obtain more funding and better support. It's a fair call and I'm certain that it will provide access to these. My only concern is; where is the money coming from?.


Feedback?
I'm sure that I've hardly scraped the surface of this issue and I plan to cover arguments from the other side in my next post. In the meantime, if anyone has other reasons for wanting the labels merged, I'd be quite keen to hear them.

15 comments:

L said...

I like your take on the pros. What is your take on the cons? I think that a merging will have some positive effects for everyone on the spectrum my worry is that, like in my case, because I'm a good mimic I was hard to diagnose, that some people with Asperger's will go undiagnosed and only people on the "lower functioning" end of the spectrum will benefit.

Gavin Bollard said...

I would have been upset if nobody had objected to the "Politically Correct" term in this post.

There's absolutely no doubt that at least some of the responses to the DSM V do stem from the notion of "political correctness" (I've certainly noticed some) but that doesn't mean that they all do.

I think that the vast majority of DSM V supporters aren't supporting it for PC reasons but there does seem to be small and very vocal minority who are. This was evidenced very clearly in reactions to one person's "bad taste" descriptions of people with autism.

Being politically correct doesn't suggest that one's choice is wrong - only that they're motivated by the wrong reasons.

An easy example is: Denzel Washington who received best Actor for Traffic. The guy deserved best actor - but for a string of films like Hurricane or Glory. Not for Traffic. The award seemed to be given to him because the academy realised that they'd been discriminating against him.

Applied to the merging of the labels, it should be done because the two conditions are clinically similar - not because of any misguided notions of "fairness" or "redressing a balance".

Rachel Cohen-Rottenberg said...

I have to object to the "politically correct" label being applied to those of us who want to make common cause with all autistics. In fact, I wish the term "politically correct" would disappear (along with the Asperger's label) because it's a dismissive term that distracts from the substance of the issue.

I don't consider solidarity with all autistic people to be an issue of politics at all; in fact, it's an ethical imperative. And that means that we listen to each other, and that we don't make assumptions about one another's levels of functioning. The high and low functioning labels are simplistic and misleading, and I've dropped my use of them, along with the Asperger's label.

Each of us is a complex world unto ourselves. All of us have areas of high and low functioning, and they can change from day to day, or year to year, or not at all. They can also change according to context and the point of view of the observer.

The DSM-V will retain the hierarchy of "severity" levels, but having all of us on the autism spectrum is a good start. Now they'll just have to create criteria that actually have something to do with being autistic. Even the updated criteria are both limited and wide of the mark.

John Elder Robison said...

I always enjoy your thoughtful essays.

Best wishes
John

Caitlin Wray said...

I have not taken a 'side' in the controversy at this point, as I am still too new to the realm of Autsim (my son was only recently diagnosed). However, I do know that I am concerned about the transition period. That chasm of time in between the old and new definitions, wherein people working with and making key decisions about kids with Aspergers/Autism lose the reference points they have become accustomed to. Who will fall into that chasm?

For example, we have an interview with a small private school for my young son in a few days, the ONLY school we have found that can meet his needs, and I think we have a far better chance of getting in with the Aspergers label in the current environment, than we would with an Autistic label in the next 5 years. The school sees "Aspergers" and thinks "smart, high-functioning, less need for funding" (not that it's a correct stereotype, but it is one nonetheless). Autism is such a broad spectrum, that without more precise reference points I worry how this will affect institutional (medical, educational) decisions. Are there more precise sub-categories in the DSM that will now become part of the common lexicon?

I recognize that this concern plays directly to the issue of discrimination within the Autistic spectrum, and I respect the argument that in the long term this will level the playing field. But as a mother, it's hard to see past the direct implications for my son, in the short term...

Michael Stuart Sherman II said...

A! I've only recently caught wind of your blog posts as I have only recently been researching Aspergers, of which I have.

To the topic: I think it would be nice for doctors to come to a decision on this matter, for what I've read, it's constantly debated weither or not Aspergers is of it's own disability/disorder. I also think it would be nice for the seperation of the two, Aspergers and Autism, to be dissolved. However, I do think it's important for Aspergers to still be recognized as a different "level" of Autism so that specific needs can be meet. After all, the reason why they haven't been put together is the differences, and though to see things as the same is essentially good, it is just as important to see the differences. That's what makes Aspergers, in the eyes of people as a whole, to be both a beautiful and ugly thing.

fasb rating system said...

I don't consider solidarity with all autistic people to be an issue of politics at all; in fact, it's an ethical imperative. And that means that we listen to each other, and that we don't make assumptions about one another's levels of functioning.

Bill said...

I really enjoyed your post. As someone who has recently started working with a social service agency that helps individuals with Autism and ASD, I appreciate your well thought out post on the positives of merging asperger's into autism.

I look forward to your next post on the cons.

Thanks.

M said...

nice break down, thanks for delving into this.

i'll say this, but i have no real conclusion, i'm still struggling with where to come down on the issue.

i've always avoided associating asperger's and autism...not because i personally want to distance myself from it, but because i worry that referring to any of my traits as "autistic" would minimize the experiences of those with classic autism.

to someone who has trouble speaking, feeding themselves, managing daily life...to hear me refer to an awkward social interaction as "autistic", that might be offensive.

so, i've always used asperger's exclusively just to make clear that i'm referring to social deficits, not the more debilitating deficits of classic autism.

but again, i can't reach a conclusion about this issue...whether or not the asperger label should be grouped under one broad label. just trying to read posts like yours, sort it all out.

Kristi said...

I have found your blog recently, and enjoy your succinct way of putting together your thoughts on autism and asperger's. Very enlightening and very enjoyable to read.

As a mother of an 11 year old son with asperger's, I try to instill in him the confidence to speak openly about his diagnosis, so that he can help others understand one facet of autism.

I haven't come to my own conclusion on the merging of labels as of yet, however, if this means that children on the spectrum can receive the help they need in school, or possibly be eligible to receive more, than I would be ecstatic.

I look forward to your thoughts on the "cons".

spot_loves_me said...

I am in support of the changes, for a few of the reasons you mentioned-- primarily that high functioning autism (my own diagnosis) and asperger's syndrome are the same thing when it comes down to it. My aspie friends complain that the term is "tainted" as you put it, but I don't think that's any reason to make a medical decision and it does imply elitism to me when people with asperger's insist that they do not have autism. They will simultaneously admit that they have asperger's and asperger's is a type of autism but will not say they have autism. I am sorry if it bothers them to be lumped in with me, someone with the exact same symptoms they have, but it's not inaccurate to do so.

I also think that the aspies who are rejecting the change because they fear the stigma of the word "autism" and being associated with those that are lower functioning is reinforcing the idea in front of NTs that autism DOES mean lower functioning when it does not. I have a 125 IQ, a job, a place to live, friends, a college degree in progress, and a happy and healthy relationship. I am not low functioning and nobody should be led to think otherwise.

sue said...

i get the impression u were diaognosed as a child instead of an adult what joy to grow up knowing u have a condition instead of being weird aspergers is not something u can control it controls your life well thats life i just feel sorry for people that have not got a loving understanding family because social sevices dont care unless its physical ps cant spell am what social sevices class as normal if i had aspergers then i would be abe to spell xxxx

Gavin Bollard said...

Sue,

Not sure if you're referring to me or to one of the other commenters but I wasn't diagnosed with Aspergers until I was in my mid-thirties.

I did have hearing difficulties as a child though and that was what made my family more accepting of my differences.

Maggie Harris said...

I'm worried about the stigma. It may be a stigma that shouldn't be there, but heck if I want to deal with it. Why make more people suffer in the same way auties do? It's just cruel... Asperger's can have a positive connotation, and you're saying that should be taken away just so we can "help" people with Autism?

I'm not that self-sacrificing! I just want to live my life with minimal issues-- is that so wrong?

On the scientific side, merging everything into one big label would impede research for the various individual conditions. Suppose our brains are structured differently-- well, too bad then, because apparently we're pretty much screwed.

We're already on the Autism Spectrum. We can access those resources.

I see absolutely no benefit to aspies whatsoever here, and I refuse to be taken down alongside auties and have to deal with that stigma just because they thought that we should-- I don't know, help them? have to suffer as much as they do? why??

I don't want to be an advocate for Autism. I want to be left alone to live my life without having to deal with it.

And a cure-- well, if you have Asperger's and you want one, then it looks like you're outta luck unless it DOES turn out to be just like every other ASD. Heck, if you have anything...

That's another thing. It isn't proven either way, so how would it be scientifically sound to pool everything together? It really doesn't make sense to do things that way.

I'm basically in constant fear now that I'll have to tell potential employers that I have Autism instead of saying I have Asperger's. I don't want to deal with more discrimination than I would otherwise.

Miguel Palacio said...

I am pretty "high-functioning", as I guess my day to day battles are less pronounced than some of my other autie peers. But one thing I do notice. There is a perception by NTs that auties have a hard time "connecting" with others. But what NTs don't seem to get is that auties often times have a decent time connecting with each other.


It's almost like, hey, I get you, or, I speak that language, or, we come from the same planet. Hello comrade! And there is almost a sense of relief. One can put one's guard down and be themselves and not to feel like one is on the grand stage before an NT audience. Especially if both auties are relatively self-aware, then one can relax, stimm all they want, not feel pressured by matters of too much or too little eye contact and be more considerate about things that overwhelm the senses. It can be a good zone. An affinity that allows auties to open up to each other more than to NTs because of the commonality that is shared.

And the more that we become self-aware, the more we become aware of each other as well.