Autism and Asperger Syndrome

The question arose as to whether one could, or should, label a certain individual "autistic".  Here are my thoughts on the matter.

Autism vs. Asperger Syndrome

I think this reflects an unfortunate problem with terminology. This is nothing new with the medical profession, which is always redefining ailments, sometimes for good reasons based on research and clinical observations, but sometimes with an agenda – typically having to do with things like research funding, medical insurance, certifications (of doctors, hospitals, medical schools), etc. – even politics. Everyone wants to “belong” – to be part of the “in group” – and medical professionals, being only human, are no different.

Autism:

It wasn't all that long ago (as recently as the 1960s, and maybe more recently) that “autism” described a well-known set of symptoms and conditions. It was typically diagnosed at an early age (pre-school or even infancy), and found more in boys than in girls for some reason (I don't think they've figured out that part of it yet – it probably has to do with differences in brain and neurological structures). Typical symptoms included inability to relate emotionally (and therefore socially) to others, including one's own parents... no signs of affection... minimal or no verbal communication... low threshold for over-stimulation (by lights, sounds, other people, activities, etc.)... what verbalization there was tended to be “flat”, i.e. uninflected or monotone... a tendency toward repetitive activity (concentrating on one thing for hours at a time)... physically passive in some cases, in other cases a tendency toward rapid, random and unfocused movements... basically just out of contact, in their own world much or all of the time. (Paradoxically, while not showing signs of obvious affection, some autistics can be physically “clingy”, which I take to be based on need for contact comfort.) (Think about it – if you don't understand the world and it doesn't understand you, some sort of physical comfort and security can be good.)

And this was – as one might imagine – a pretty easy condition to spot. The problem came not with diagnosis but with notions as to causality. For a long time, blame was placed on “cold, uncaring, non-nurturing” mothers – this has been debunked, fortunately, but it caused a lot of stress and heartache in many families. (If anything, there might have been some degree of causality in the other direction, i.e. the mother of an autistic child might have distanced herself to some degree as a matter of emotional defense, as if to say “if the child doesn't care about me (or anyone else) why should I care, or pretend to care, about him?” Thus, a way of avoiding or lessening chronic emotional stress and frustration.)

In terms of relating to the world, autistic people typically showed little or no competence, and therefore could never be left to their own devices for long, and certainly could never have been expected to live independently or make a living. So they always had to be cared for by others – and since they were incapable of showing much appreciation for that care, it could be a cause of frustration on the part of the caregivers.

But here's an interesting part. Some autistic individuals showed remarkable talents in certain very narrowly defined areas – especially music, and particularly piano playing. They could do things like hear a piece played on the radio or a record, and reproduce it perfectly on the piano after just one hearing. Some were also very good at certain mathematical operations, figuring out calendar dates, counting by just glancing at an array of objects, etc. – all having to do with numbers, you'll notice. Numbers in the basic sense, not concepts or theories or models, just plain numbers and things that had a mathematical basis. They may also show remarkable abilities in memorization – things like sequences of cards, phone books, train schedules, etc. So in that sense they (some, but not all) had extraordinary abilities in a very limited area, but when it came to everyday things not so much (being unable to dress themselves or perform any but the most rudimentary personal care actions, e.g.).

So this was the picture when it came to autism and autistic individuals – easy to spot, well-defined set of symptoms, incapable of independent living, and so on. And as to treatment, the best bet was always to find things that they would respond to, that would “wake them up”, so to speak – and let them spend time with those things, and not worry about the rest. And the condition, however it came about, was not amenable to cure – it was a fixed condition, basically, which would persist throughout adulthood.

Asperger Syndrome:

Now – somewhere along the line, someone decided that that substantial group of people who were, among other things, socially awkward, “shy”, over-sensitive to sounds and light, who avoided crowds (and other people in general, in some cases), who enjoyed finely-detailed activities and could concentrate on them for long periods of time, who tended to be socially isolated or prefer the company of others like themselves, who tended to be uncommunicative or, on the other extreme, talk people's ears off about some very narrow topic, who could be somewhat OCD – and so on – had a “syndrome” called Asperger Syndrome.

Now, this was all well and good, in that it, for one thing, provided a basis for understanding that there were people who were simply “that way”, and that while intensive therapy or interventions weren't generally called for, certain kinds of support and, if you will, “benign tolerance” would make life easier for everyone. The danger, however, was that once you define something as a “syndrome”, you, by implication, are saying that a person isn't “right”, or that they're handicapped in some way, or need help, etc. In other words, they're no longer on the same spectrum with “normal” people but need to be given special attention (which should be positive, but which can also be negative). On the plus side, Asperger “types” can be relieved of the burden of thinking that something is seriously wrong with them, or that it's their fault, or if only they'd get their act together, etc. And in the social sense, Asperger types can form interest groups of various sorts without feeling like a bunch of geeks and losers.

So it's a mixed bag, but overall I'd say the definition of the syndrome has had beneficial effects. It enables people with the syndrome to feel better about themselves, to pursue their interests and emphasize their strengths without feeling like underachievers in other respects... and it enables other people to accept them as they are, and likewise appreciate their strengths and talents, and be willing to overlook areas in which they aren't quite up to par.

The Bad Marriage Between the Two

Everything could have been fine at this point, except that someone – over-functioning in the “syndrome” and terminology department – decided that, because of the observable similarities in symptoms (some, but not all – and certainly not in severity) between autism and Asperger's, they had to be lumped together on a “spectrum”, which became known as the “Autism Spectrum”. So, number one, they're taking a rare subset of people (autistic) and grouping them with a not-at-all-rare subset (Asperger's) and, in effect, calling them all autistic. What sorts of motivations went into this? Well, for one thing, there's the simple matter of money, i.e. funding for research, treatment, therapy, etc. – not to mention health insurance. There was always money in autism, because it was rightly considered a serious condition – but there was little or no money in Asperger's, other than the opportunity to sell books. But lump them together and call it autism, and the money starts to flow. (This may sound a bit cynical, but the extent to which “science” can be tempted by money has been demonstrated many times over the years – and more than ever in these times, with obsessions like “climate change”, gender fluidity, etc.)

Secondly, there's a political, or let's say social, angle to it all, the notion being that autistic people, and their parents and caretakers, won't feel so bad about their situation if they now feel more “mainstreamed”, and therefore accepted. If the truly autistic were a small minority before, they can now feel like members of – still a minority, but a substantial one.

(One could ask, terminology-wise, whether rather than coming up with the “autism spectrum”, they couldn't have just called autism “high-level Asperger's”. It would have made no less sense, but the political and social impact would have been less.)

Plus, there's a pretty good chance that most truly autistic people don't care one way or the other what “spectrum” they're on; some of them don't care about much of anything at all. But the much larger number of people who are Asperger's types, and who know it, and now find themselves on the “autism spectrum”? I can't imagine that's very good for their morale or self-esteem. But we're talking politics here, right? So non-preferred groups always have to make sacrifices, like it or not, in order to benefit preferred groups. (And the fact that this is all about naming, and nothing else, makes it especially cruel and unjust. Terminology can change overnight, and someone who is “sick” one day can be declared “well” or “normal” the next, and vice versa.)

But is it true that autism and Asperger's are similar? Well, yes – in terms of the types of symptoms, but certainly not in degree – and also not in terms of the nuances, or fine points. And also not in terms of the variety of symptoms that might be exhibited by any one individual – Asperger's types have a much more varied repertoire, if you will, within the bounds of that syndrome, whereas true autistics are much more limited. Overall, you can point to social issues, attention factors, mathematically-based interests, responses to the environment, preferred vs. non-preferred activities, and so on. But in terms of self-care, ability to operate in society, ability to earn a living, and so on, it's a world of difference, and it does no one any favors to pretend that it's nothing more than a matter of degree. Plus, one can point to many examples of high-achieving individuals – world-class achievers, in fact – in things like math, physics, music, chess... even the performing arts... and also art, engineering, computing and automation (a veritable den of Asperger's types), and so on. Many have risen to the top of their field. Can the same be said of the truly autistic? No. Some have made contributions – Temple Grandin comes to mind – but this is exceptional. (There's a history of what have been called “idiot savants”, or “calculating boys” who can perform remarkable math operations in their heads with amazing speed – and the chances are those have been largely autistic individuals. The question in those cases was always, given that they have amazing talent in one specific area, is there anything else they can do well, or do at all? And the answer was frequently no. All their brainpower was focused on one thing.)

I also suspect – although exactly how one would measure this is a good question – that if you arrayed all the Asperger's types and the truly autistic along the same scale, you'd get a gradually downward-sloping curve starting at the low end (next to the “normal” population), and there would eventually be a gap, followed by a “bump” or miniature bell curve representing the truly autistic (with their own spectrum, although much narrower than the Asperger's spectrum). In other words, you would find few if any cases where a person was part-Asperger's and part autistic – and I think this would reflect significant differences in brain physiology.