Before I go into anything else, I want to preface this essay by stating that I have read a small amount of the texts offered by one Amy Sequenzia, and I admire this woman’s bravery as well as her willingness to speak up against the curebie menace. But when I read yet another tirade about “functioning labels” (their words), I feel compelled to step in and offer a few comments.
The first thing that needs to be understood here is that diagnostic labels as written in the DSM-whatever are not, never were, and never will be written with the people the diagnostic labels are applied to in mind. There is just no way to do that and serve the kind of scientific purpose that manuals like the DSM were intended to serve. These textbooks, for all of their faults (which are legion), were intended to make the clinician’s job a bit easier to perform. And make no mistake. Every job in the world, from clinician to plumber to airline pilot, has one common characteristic. None of them desire their job being made harder. Every single one of them wants their job made easier (but not less effective) wherever possible.
Now, let us combine this insight with a dirty little secret about how autism as a diagnosis was treated during my childhood. Basically, it was a pervasive, all-aimed label where anyone who was autistic was unable to even carry out the simplest, most basic of life’s functions. It was thought of as one thing, one all-encompassing label. A huge stereotype was presented to the world with the caption “this is autism”, and we were supposed to just accept that. The reason I am saying all of this is because I would like to ask Amy and the anti-label brigade one simple question. Do you want to go back to that? Because if the DSM ends up consisting of only one “autism”, that will end up being the result. We have come too far in terms of understanding that there is not just one all-encompassing thing we call autism. That it can be as wide and varied as the Human species was intended to be by nature. Not only that, but the cruel and recognition-denying stereotype we call the Rain Main caricature was at best a deliberate curebie propaganda effort.
Without the diagnostic label of “high-functioning”, we would not have made this progress. We would still be suffering under that stereotype, being told this and nothing but “is autism”. When criticising functioning labels, it is very important to remember both that fact and the earlier-cited fact that they are for diagnosticians, not the diagnosed people.
Now, having said all of that, do I believe that diagnostic labels could not stand to receive some improvement? Hell, no! But here is the thing. Contrary to what the elimination lobby that wants no more diagnostic labels thinks, we need more, not less diagnostic labels.
Let us look at this from an X-Men analogy perspective (I am listening to the X-Men: First Class score right now). Now, in the small fraction of the X-Men canon that I have seen to date, two pervasive views of Mutants appear. The curebies and Nazis simply speak of “Mutants” in a third-person, all-encompassing manner. One Mutant is every Mutant, to them. But when Mutants gather in social groups or confront each other in matters of survival and business, they are very concerned with how they differ from one another. In X-Men (the film), Professor X (Patrick Stewart) makes damned sure that Wolverine (Hugh Jackman) understands that he can implant suggestions or echoes of thoughts into peoples’ minds. In X2, Professor X even makes it clear that unless Wolverine respects that there are limits to where he will tolerate Wolverine’s smoking of cigars, Wolverine will end up believing he [Wolverine, that is] is a six year old girl. By contrast, Rogue (the ever-amazing Anna Paquin) is shown as being able to “steal” the powers of other Mutants and make use of them. Whilst Magneto (Sir Ian McKellen) is able to neutralise any threat Wolverine poses simply through focusing his own power. The parallel this presents to the world of the autistic may be coincidental, but you better believe the people behind both the X-Men comic book canon and the film adaptations are, consciously or otherwise, incorporating such real-world things into new stories.
The point here is that whilst the norms are very impersonal and non-specific about describing Mutants in public, Mutants are extremely specific about what they are and what they can or cannot do in their own company. And that, friends and neighbours on the spectrum, is my point. Not only do we need to be more specific about this with each other, we need to put pressure upon the norms to repeat this behaviour. Let me concrete this with some examples of why.
People who have read enough of my writings or know me know that I have no love of the “disability advocate” who generally refers to herself as Donna Duncan. She refuses to listen when she is told vital information about the person she thinks she is helping, often by that very person. I was mortified when she told me, not knowing how she sounded, that in her experience all of the autistic people are “good at math” and such. I tried to be polite and tell her that autism is defined by variation, but the truth is I was only trying to be polite at the time. The popular saying among autistic self-advocates is that when you have met one autistic person, you have met one autistic person. My mother can consider herself forgiven for not understanding that just because her son could read at a university level when he was starting school does not mean he will suddenly start solving Newtonian math equations when teachers start trying to introduce the concept of multiplication. Or that he will respond to their teaching methods in exactly the same manner as his peers. But a so-called “disability advocate” should know better. It is kind of a part of their job.
Specificity and variety are not just the defining characteristics of autistic individuals. They are important tools of survival, in the same sense as the sharing of knowledge is.
Hence, not only do I believe that autism as a group of structural mutations in the brain should be removed altogether from the DSM, I believe that it should be given a DSM equivalent all of its own. Lack of labels is not, never has been, and never will be the problem. I believe that people suffering from neglect by services, people labelled with Borderline Personality Disorder being a good example, will agree with me here. The problem is that we need to be even more specific than has previously been the case. The cry and complaint that being labelled “high functioning” means being denied help or services that are sorely needed is loud and heavy, but how is collapsing the different groups back under one all-encompassing “this is autism” label going to help with that?
I am also very convinced that when we do get our heads on straight and tell the authority behind the DSM that autism is unique, and thus demands unique consideration, it will also do a lot of cutting curebies and their propaganda off at the knees. Presently, curebie-ism relies very heavy on there being only one autism. Thrives on it, in fact. When they present their doom and gloom caricature of the autistic spectrum to the public, they even take great pains to say “this is autism, this is all autism is, and this is all autism ever will be”. That is for a reason. Relying on the gullibility of your audience can only carry you so far. So what would it do to this tactic if a clinical psychologist could open a book called, say, The Spectrum Of Autistic Mutations, and show the tooth-gnashing parent of a five year old autistic child a specific diagnostic name and a researched list of things it could mean or will mean? The curebies would be finding themselves standing on one leg upon a very rapidly-shrinking platform of ice.
And let us be honest here. No matter how the clinicians chop and change and reapply their little labels to us, it all comes to naught if they are unwilling to take the necessary action to improve our situation, as has been my experience ever since I was formally diagnosed. Not one effort that is not lacking even a plausible rationale as to how it will improve my present situation has been offered. Thus, autistic adults are often finding themselves in the horrible situation where they are being made to wonder if they have to further disable themselves in order to receive any kind of assistance that they might already be in need of. This, needless to say, makes the “children, children, children” out of many, many mouths even more insulting than it already is.
But all of this is basically an adjunct to a very simple point. You might not like diagnostic labels. You have a right to dislike them. But clinicians love them because it makes their job a lot easier than it otherwise would be. Add to this that the solution to many problems we currently face is expanding, not eliminating, the choices of diagnostic labels, and you can see that I have a very big problem with the current political correctness trend.