By Michael John Carley

When my son and I were diagnosed with Asperger Syndrome, or AS, one week apart in late 2000, I had no idea what kinds of debates were ongoing in the autism world. I thought initially that the autism world would all think the same: “How can they not, given that there's so much at stake?”

But they don't. There are hot debates about methods, ethics, and theories —many more so than those Alison Singer and I will touch on with this exchange. And these conflicts are probably a good thing, not a bad thing, even if it complicates matters. For in the grand scheme of things, we still know relatively very little about “all this autism stuff” and these discussions are really the correct, Darwinian road that we should all be on. The problem has only been where the debates have become so divisive; where one side's opinion has so invalidated the experiences of the other. How the disputes are played out can be vastly improved upon. And this exchange with Autism Speaks is a welcome opportunity to rectify some of the hurt that folks on both sides of this debate have experienced.

What I'm going to try to do is outline where we see the divisions existing, and then tell you why GRASP, and maybe other peer-run autism organizations (in other words, organizations run by adults on the spectrum) believe the way we do.

Where the disagreement lies

Yale's Fred Volkmar once used the words “lumpers” and “splitters” to define the two camps. I like these terms.

On one side are the splitters who think Autism and AS can be clinically separated. On the other, the lumpers, who feel the autism spectrum is all one and the same only with extreme ends, and a vast gradient in between.

Both lumpers and splitters would agree that if Albert Einstein (among many others) really did have AS, as people now say he did, then that's certainly not what people normally associate towards someone severely autistic who may be completely non-verbal. But while no one would want to have “cured” Albert Einstein of anything; if the lumpers are right, then that is exactly what we are saying — and this is where the two disagreements become one.

Splitters use the word “cure” believing that autism is a terrible thing to happen to a person, whereas AS, while presenting difficulties, is believed to be not so terrible, and maybe doesn't warrant use of the word. Lumpers (like us) do not believe in the opposite, i.e. that AS is somewhat terrible and/or that autism is not. Rather, they/we believe that the answers are far more complex.

The word “cure,” like the word “disease,” has historically reflected conditions, syndromes, and diagnoses that are acquired, meaning that you got it from somewhere after you were born. Now granted, genetic alteration — as proven by a Welsh lamb a few years ago — is not the impossibility we once thought it to be. And depending on what dictionary you're consulting, the descriptions of these words may not match the populist manner in which they are used. But in general, most people who believe that autism and AS are genetic do not use the words “cure” or “disease” because they feel primarily that what you were born with, i.e. your genes, you will die with. However, if you do believe that autism is acquired, then the word would seem to be medically appropriate.

Who decides on the terms?

That's the medical side to the terminology. But there's an ethical side too: Who gets to determine what words are used?

This answer too may reflect one's identity as a lumper or splitter. In other words, if our ideas of autism strictly revolve around those who are primarily non-verbal, then in an age when we have not yet learned to communicate with the non-verbal autistic, we do not know what terms they would like us to use. Therefore, under these ideas, they have to be spoken for by others.

But confusing things further, what if, through therapies and treatments, they become verbal? Has their diagnosis then changed?

The authors of the DSM-IV (The Fourth edition of the Diagnostic and Statistical Manual, the clinical reference book used to diagnose us all by psychologists, psychiatrists and the like), for instance, will readily admit that the definitions described for AS and autism do not accurately reflect the world of adults being diagnosed late in life. These adults, coming from pasts of misdiagnosis, or being thought of previously as quirky, schizophrenic, eccentric, things far worse, these adults can be identified for the symptoms they have, and, for the symptoms they don't have as described in the book; much the same way children are diagnosed. But the book fails the diagnosed adult in that a third category of behaviors — the symptoms they once had, but that either through peer pressure, labor, etc. they somehow altered or ironed out of their system — can't be taken into consideration with 100 percent accuracy.

If that individual doesn't have the symptoms anymore, the question then becomes: Are they to be thought of as cured?

Is your head spinning yet? After three years in this job, I promise you: My head never stopped.

I won't profess to you, as someone with AS, that I clearly know what's going on inside the head of what might be your non-verbal daughter or son sitting there in their own world. But I do feel there's more going on inside that head than we, myself included, usually give their credit for being. We just don't see it, so it's hard to believe. Furthermore it's not on a level we understand (yet), and because we love them, this hurts. Obviously, we want to bond with those we love, not think of them as, at best, awe-inspiring mysteries.

Mixed messages

As is our nature, organizations of people on the spectrum will focus in on the suffering of people on the spectrum, just as parents organizations will hone in on the suffering of other parents. Both sides learn a lot from one another (which is why GRASP proudly partners with many parents organizations) but what helps parents is often mistakenly spun as helping the autistic or “aspergian” individual (and, to be fair, vice versa). No one can know for sure but many people from our community believe that many non-verbal individuals are quite content in their world, especially if they have good supports and are encouraged to think positively about themselves.

The burdens of the families, however, revolve around a myriad of potentially traumatizing circumstances: Financial concerns, deteriorating marriages, addressing neglected siblings, one parent having to quit a job to stay at home to take care of the affected individual; and this is all exceedingly hard, traumatic, life-altering stuff. But the tragedy is so often due to our expectations. There is no fault in this — I face it too as a parent — but you could frankly argue that our problems might have more to do with the playing field autism found itself on, and not with autism itself.

Lastly, are all these diagnoses terrible things to have, or not so terrible things to have? We're certainly getting mixed messages these days. For examples, there's:

• the movie about the autistic boy making the track team
• email groups that heavily criticize verbal adults on the spectrum who call themselves “autistic”
• stories describing autism as an epidemic
• books describing Thomas Edison, Thomas Jefferson, Emily Dickinson, Andy Warhol…etc. as being on the autism spectrum
• an educational Internet campaign describing the various contraptions a very affected person with autism wears inside the white-walled room where she is pictured
• ESPN showing footage of an autistic kid hoisting 20 in a basketball game.