Tuesday, March 16, 2010

My Thoughts on the Changing Aspergers Label

In the last few posts, I've looked at the two sides of the controversy over the changes to DSM V regarding the absorbtion of the Aspergers label into the general autism banner.

In this post, I want to give you my thoughts and position on the issue.

Label Recognition
Aspergers is quite obviously on the Autism spectrum. There's absolutely no doubt in my mind that they (aspergers and autism) share many traits and that often, though not always, the intervention required is also the same.

At the same time, I'm confused by all of the sub-labels in the autism spectrum. Like Aspergers, High Functioning Autism (HFA) is a successful "brand" bringing almost instant recognition but who amongst the general public knows how to refer to the other end of the spectrum?

Label Reliability
What exactly does "high functioning" mean anyway? I have met a range of people with this label and they ranged from "rain-man style" savants to people who could barely speak.

The problem with a level-indicating label is that it impacts the "brand recognition" of the other labels. If people meet a "savant", they're going to assume that all HFA's are "savants". If they meet someone who has difficulty talking, they'll write off anyone on, and particularly those "below" HFA, as non-functional. Having words like High, Medium and Low simply encourages people to make guesses about the differences rather than ask. This is the main reason that the autism label is so badly tainted.

This is more or less the same sort of logic we apply to black and white concepts like blindness. In the case of blindness, you're either blind, partially blind or NOT blind. There's no middle ground (actually there is but I'm not going there). We know which condition is "better" and which is "worse" without having to look anything up. Even in the simple case of blindness, neither label truly describes the condition and it has become necessary to introduce new labels, such as "colour-blindness" to deal with cases which don't fall into the usual range of conditions.

Autism is quite different to blindness. It doesn't deal with a single sense and it encompasses a far broader range of attributes and traits. The words "none, partial and full" do nothing to promote understanding, so why do we delude ourselves that high, medium and low carry any meaning either?

Useful Labels
The aspergers label is quite different to HFA even though they generally mean the same thing. With aspergers, you either know what the label means already - or you have to look it up. When you look it up, you don't simply get a rating of high, medium or low, you get a list of possible traits. In this way, aspergers is a far more communicative label than any of the others on the spectrum. It doesn't offer easy comparison with the other labels within the autism spectrum because, like the colour-blindness example earlier, there is no comparative operator (high/medium or low) in the label.

My Feelings on the Whole Label Names Issue
I could go on for a lot longer about the other issues with the label but I know what you've come here to read - so, without further ado, here it is.

I guess my view is based upon a few "rules";
  1. All parts of the spectrum should be recognised as spectrum disorders, therefore all parts should contain the word "Autism".

  2. All parts of the spectrum should be represented by non-referential labels, like "Aspergers" to prevent automatic comparison between labels. In time, as research continues, perhaps these labels too will split into sub-labels.

  3. Labels should describe a group of traits, not just one.

I'd really like to see "High Functioning Autism" disappear entirely to become;
  • "Aspergers Autism"
and perhaps the lower functioning parts of the spectrum should be referred to as;
  • "Kanner's Autism"
I'm sure there's probably quite a few levels in between which could be given names and their own particular spin on traits.

Similarly, I'd like to see the comorbids included in the label. My eldest son would then be described as;
  • "Aspergers Autism" (with LD/ADHD)

Finishing Off
I know that I've ignored all the other issues in this post, such as how funding is allocated but I firmly believe that if you get the labelling right, everything else will follow.

I'm leaving you with this example of cats to show how ridiculous the spectrum is now versus how I'd like it to be.

This is how the spectrum currently is. Low, Medium and High based on one particular attribute level of functioning - or in this example, length of fur. You'll notice that the cat on the end has the word aspergers next to it but that it isn't even recognised as a "cat". You may also notice that the only difference between Aspergers and the high cat is the colour of the fur.

We can infer from this picture that high cats are much better than medium cats and that low cats are really not good at all. In fact, if it's common practice to institutionalise some of the medium cats, then surely, you can presume that all low cats can be institutionalised without further investigation.

It's not a useful criteria.

Below is the means by which these cats are really categorised. If you don't know about Sphynx cats, then there's a wiki page which tells you all about them. The same goes for all the other types of cats. Even better, there's plenty of space for new types of cats; tortoise shell cats, tuxedo cats, calico cats, muchkin cats and the list goes on.

Why do our pets get better labels than us?


"Tarry Home" said...

I have not followed this new move to relabel Aspergers but someone mentioned that they were putting it in the mental illness category as oppossed to the personality disorder category, which is very upsetting. Do you know anything about this?

(I really like your thoughts on the relabeling matter!)

Anonymous said...

I think you're right, and I find the cat analogy immensely entertaining.

Shanti Perez said...

The worse part, to me, is that people make such gross assumptions about things instead of finding out more or recognizing each person is an individual, autism or not. If the general public wouldn't be so lazy when it comes to self-directed learning, things would be easier for everyone.

I enjoyed what you've written. It is organized.

Emma C from Facebook said...

"Tarry Home" I don't think Asperger's has ever been a "personality disorder".

It is a "Pervasive Developmental Disorder".

IMHO Asperger's is being overdiagnosed. I know of four people with the diagnosis now, that I don't think have actually been assessed or diagnosed properly. I base this on anecdotally the assessments are too "quick", there's no testing being done in areas like recognising non verbal signals, and the same "report" has been written for four people that I personally know of.

The other one I find amusing is now they are wanting to put NVLD into the DSM V.

M said...

do you mind if i link to several of your posts?

you and i disagree on several points...but i appreciate your perspective and the your sense of optimism. i'd like to link to your writings abour this, as a counter-point to my own.

thanks for the post, hope you're well.

M said...

do you mind if i link to several of your posts?

you and i disagree on several points...but i appreciate your perspective and the your sense of optimism. i'd like to link to your writings abour this, as a counter-point to my own.

thanks for the post, hope you're well.

Gavin Bollard said...


I have no objection whatsoever to being linked to, quoted etc.

... and I'm happy to be disagreed with as well, since every disagreement makes me consider different options and perhaps a different picture. I take all disagreement as constructive criticism and new ideas.

outoutout said...

You've got some good ideas here. I also enjoyed the cat analogy. :-)

Thraesja said...

The cat analogy really slammed your points home. Well done.

Caitlin Wray said...

This is an excellent post Gavin. So concise. If I had tried to express the same thoughts it would have taken 8 pages of abstract reasoning to get to my point. I completely agree with your assessment of the need for labels - completely reconceived, not preconceived, ones.

Of course if I had used an animal metaphor... it would have been dogs. You must be a cat person :)

Have you considered sending this post in comment form to the DMV folks who are currently accepting feedback on their proposed changes? I really think you should. If not, I will be sending them a link to your post!

Rachel Cohen-Rottenberg said...

Love the cat visuals. I don't know if you've ever seen a sphinx cat in real life, but the first time i saw one, I thought it was very sick and would attack me if I came too close to it. Kinda the way people think of LFAs until they get a clue.

While I support the proposed changes simply because they appeal to my sense of equity (as in, why should people with an Asperger's diagnosis get excluded from the autism label?), the DSM definitions are still based on an implied hierarchy, and changing the names to "Asperger's autism" and "Kanner's autism" will not change that. Asperger's and Kanner's imply a hierarchy as well. It's ironic, because most of my autistic friends, like me, are allergic to hierarchy.

The medical establishment, however, seems quite fond of ranking people. I think that their obsession with hierarchy ought to make its way into the DSM at some point, with a spectrum of severity levels. But I'm not placing any bets on it. ;-)

Gambeli said...

I've always been good for labels and lists and organizing. I agree with your assessment of placing AS right in with autism spectum. I was diagnosed as an adult but always knew there was something askew in my head. Living with it makes a difference.
The cat comparison, well done!

aspiemom said...

As a psychotherapist I always warn my clients that a diagnosis does not tell anyone who they are. Someone who has been dx'd bi-polar is not bi-polar. It is really a short cut for categorizing a group of traits, behaviors or symptoms, so that we have a general idea of what we might expect.

I don't think the term Asperger will disappear even if it is eliminated in the DSM. For some people the picture fits so clearly. However, I personally get annoyed because my daughter who is very bright, talkative, emotional and disinterested in most school subjects does not clearly fall into the category of Asperger. I don't even think she appears as HFA. She certainly could be classified as PDD. But PDD is so broad, it only addresses certain deficits. She was formally diagnosed Asperger/PDDNOS at about 6 years of age by a child psychiatrist, but we've had so many professionals argue with the diagnosis. After many years of struggling with myself, I think I could make an argument for a diagnosis of Asperger, but I see that it is not apparent. I guess my point is that any professional needs to look closely at the individual and try to understand the experience of the individual in all cases. This true for a lot of individuals who "need to be" diagnosed in order to get proper services or perhaps medication.

DJ Kirkby said...

I've always explained Asperger's as a form of Autism so I'm quite comfortable with the change in classification. What I wonder is, once they do that does it mean that all of us who've been diagnosed with Asperger's syndrome prior to the re-classification will suddenly be without a diagnosis?

Anonymous said...

Very well written! The cat analogy is a great way to describe the labeling system.

Anonymous said...

Love the cat analogy. I've been thinking a lot about the "spectrum" idea, and I think the problem is that when people think of a spectrum, they only think of a single axis: high to low functioning. In reality, there are multiple axes: verbal ability, spatial reasoning, social interaction, and so on. Every person, whether on the autism spectrum or not, has his or her own complement of abilities.

Paul Dean said...

I've started a new blog at http://aspieawe.blogspot.com

I really like this blog and hope mine will be as cool. I've bookmarked this so I can come back and read it all! :)

Anonymous said...

I love the cat post.

Miguel Palacio said...

One problema with clasificación as a "mental illness", or even, "personality disorder" is that it forces people like me to go underground with my condition.

Most bosses don't want to hire anyone into their team which might even show hints of mental derangement, let alone actually being labeled as such.

While I find myself to be compromised in some areas, other aspects surpass the abilities of many of my peers. As such, I feel that I would be a valuable member to any work team and I wouldn't want to be discounted before I even had the chance to demonstrate this.

Also, this is an extremely sensitive matter for positions of public trust or positions that require a security clearance, which is another reason, at least until the attitude changes about us, that I keep this between me and the lamp post.