Why We Shouldn't Lose the Aspergers Label

There's a possibility that Asperger's might disappear as an official diagnosis in 2012.

Not the Mayan Apocalypse, perhaps, but a very disturbing possibility nonetheless.

As reported here in the New York Times, the committee working on the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is currently weighing the question: Is Asperger's a useful diagnosis as distinct from ASD, or Autism Spectrum Disorder?

The answer to that question would appear self-evident.

The reason so many people with Aspergers seem to identify themselves as Aspergian, and with pride, is that the condition is simply not as debilitating as so-called classic autism.

Watch someone with low-functioning autism and you'll see - there is nothing in common between low-functioning autism and Aspergers.

Why, just as the world has begun to accept and understand this diagnosis, would they be dropping the term altogether?

Says Dr. Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan:

“Asperger’s means a lot of different things to different people... It’s confusing and not terribly useful.”

Upon what assumptions is she basing this opinion?

Asperger's has defined criteria as per 1994's DSM-4. Those criteria seem to be working very well.

To illustrate how apparently absurd Dr. Lord's rationale is here, try replacing the word "Aspergers" with "autism" in her comment...

You'll see it makes an even better point than her original comment did! Yet she's suggesting that we do away with Aspergers and replace it with an even more general, ill-defined term, "autism"!

The real problem isn't distinguishing between Aspergers and classic autism.

The fuzziness comes when trying to distinguish between Aspergers and PDD-NOS (Pervasive Developmental Disease - Not Otherwise Specified).

Aspergers, PDD-NOS and HFA (High Functioning Autism) are almost indistinguishable - other than the age of onset and the fact that Aspergers comes with a physical clumsiness element.

However, these three "higher functioning" conditions are quite distinguishable from so-called "classic autism" which is often accompanied by mental retardation and complete disablement.

So here's what I would propose.

Take these three conditions - Aspergers, PDD-NOS and HFA - and lump them into one "higher functioning" condition called Aspergers.

That way you have a useful distinction between Aspergers and autism.

Aspergers would remain a serious disorder that is distinguished from autism but no less diagnosable and therefore eligible for funding, government services and research money. I know that is a huge fear for some people - that separating Aspergers would decouple us from the research and services currently available for autistics. (And it's a valid fear - but one that should simply be addressed, not skirted around by lumping Aspergers in with autism for that reason alone.)

Instead, Dr. Lord's apparent solution would be to do away with the higher functioning distinction entirely, and lump every person into the Autism Spectrum.

I think that's a mistake for several reasons.

Some of my reasons are based on diagnostic clarity as I understand it.

But perhaps just as important are the cultural ramifications.

Here's what I mean...

Aspergians continue to face challenges in terms of social acceptance, in terms of prejudice and how they are perceived by the culture at large. This fact cannot be ignored - unless the doctors behind DSM are truly so myopic that they care more about one-size-fits-all diagnostic bromides than the real-world effects of their actions.

The DSM people need to realize the cultural and practical significance of the Aspergers label.

Instead of creating one mega label - Autism Spectrum Disorder - which already encompasses too many conditions to be useful, how about this...

Why not simply tweak the criteria for Aspergers to include PDD-NOS and HFA? That way you would be distinguishing between Aspergers and autism, two very distinct sets of functioning and ability?

You would have Aspergers, which would include the higher-functioning individuals.

And you would return the term "autism" to lower-functioning individuals.

This would in no way endanger Aspergers from funding, services, research or any other benefits as long as DSM-5 outlined the challenges appropriately.

Yet it would preserve the useful distinction the term Aspergers provides in the culture (and in the doctor's office).

To tell someone my son has Aspergers is one thing. To tell them my son is autistic is quite another. And the distinction is very useful in terms of telling people what to expect, what the challenges will be, what the ability level is and so forth. In other words, keeping the Aspergers label, I believe, is good for my son.

It's also just simpler - it makes more sense.

Farsighted or "High-Functioning Blind"?

To call my son autistic would, in reality, be like calling me blind.

As a farsighted person, I am "high functioning" blind, yes. But I'm blind.

Blindness and farsightedness are both forms of impaired visual acumen. So just lump me in with people who are "blind" and be done with it.

Autism and Aspergers are both impaired forms of social functioning. So just lump my son in with people who have impaired social functioning and be done with it.

Imagine if I was applying for a job as a truck driver. The interviewer asks me if I have any diagnosed medical conditions that could affect my driving.

I tell him "I am blind."

He starts. The effect sets in. His gut reaction is complete.

"But I'm HIGH-FUNCTIONING blind!"

Too late.

Blind.

Autistic.

Similarly severe terms on a cultural level at least.

I prefer to call myself farsighted. And I prefer to call my son Aspergian.

It has nothing to do with vanity - only accuracy.

I am wondering...

Would it be easier somehow if we labeled people as having Level 1 Blindness if they were totally blind. And perhaps Level 7 Blindness if they don't need corrective lenses but should probably wear them for driving?

Of course not.

And here's something important, too.

I am not saying that nearsighted people are better than blind people. But it's useful as a category to call someone nearsighted if they are nearsighted and not "high functioning blind."

I am arguing a cultural point here, too.

It matters if someone identifies a student as autistic versus Aspergian.

The whole professional teaching community makes this distinction to some degree - as do therapists worldwide.

It is a useful distinction to make.

More to come on this topic in the future.

And while I will keep an open mind (I am a fan of thinking about autism - in fact, human consciousness as one big spectrum), right now I am against losing the Aspergers label.

Please let me know your thoughts.

Peace.