The problem is that autism in general has only been recognised relatively recently. It's poorly studied, and badly mis-understood. Aspergers is in an even worse boat. Although recognized in parts of Europe since the 40s, it was only recognised in the US in the 80s. In both cases, effective treatments and therapies have existed for less than a decade, are mostly experimental and many can cause death.
Because of this, I'm wanting to circulate a little more widely a short article I've written on detecting errors in a psych's diagnosis. Don't take this as being 100% fool-proof or "medically approved". It isn't. What it is (and what it is designed to be) is a toolkit for ensuring that your psych is confident in their diagnosis and recommended treatment. That's about the closest to a validation suite you're likely to get, but it's vital - and I can't stress this enough - to ensure that real problems are corrected and that non-existant problems are not.
First, don't take a diagnosis as being necessarily correct. Self-diagnosis is rarely accurate and autistic-related conditions are so poorly-understood that most psychs are not equipt to diagnose it properly, either.
Please note that self-diagnosis by someone with any mental disorder of any kind is almost a contradiction in terms. The point here is that for conditions such as aspergers, which are extremely rare, for which the psych likely has no practical experience and where most standard diagnostics are known to be flawed, you are being just as reckless if you take it on trust. "Professional" does not mean psychic, and even the best are going to mis-diagnose either way.
In other words, validate any diagnosis, before trusting to it. Go to your local bookshop and check the DSM-IV - the manual psychs use for diagnosis - and verify that you meet the criteria. DON'T DO THIS FIRST! It's almost impossible for a person to not find themselves in the manual, somewhere. Remember that the DSM uses technical terms, so if you're even vaguely unsure how a term is intended to be used, check with your psych.
Second, even if you do meet all the criteria, there is an enormous overlap between different conditions, and there is also a risk of certain personality types creating the illusion of meeting a specific diagnosis. There is no easy way to tell these possibilities apart. Psychs generally do this by experimenting on you - trying different treatments, noting the reaction, and then re-moulding the diagnosis to fit the treatment that works.
IMHO, this is a hack-and-slash method, and not one I trust much. So far, though, no cause for Aspergers is known and no neurological tests exist. Given that a possible side-effect for a number of the treatments is "death", I really do strongly recommend making sure your psych knows exactly what they're doing, and that you don't isolate the first time you try these remedies.
Third, here is a short list of typical traits exhibited by Asperger people. I've tried to avoid the over-generalizing I've seen elsewhere, but this is NOT to be taken as a diagnostic tool, but rather as a quick reality-check if you and your psych disagree on a diagnosis.
- Recognition of facial expressions and body-language is difficult to impossible. This one seems to be fairly universal, and most "therapies" that exist for Asperger people concentrate on this.
- A classic symptom of the entire "autistic spectrum" (and one of the reasons it's considered a spectrum) is a phenominal level of sensory data and especially visual data. (I don't know why visual in particular, but it's the one that gets repeatedly documented in case studies.) Autistic people don't like crowds, not because they don't like people (they often do), but because they become super-saturated with data and reflexivly retreat to a more tolerable level. For a better description of this specific symptom, I recommend the book "Somebody, Somewhere". It's the second in a series, but ignore the ones before and after.
- Asperger people think "visually". They picture things in their mind, and respond to those pictures. (Again, note the emphasis on visual data, even if this is in the mind.) If they cannot picture things, or if the picture is self-conflicting, an Aspergers person will typically not respond well.
- Asperger people will tend to resemble bipolar people, with two exceptions. First, the mood swings won't fit any of the bipolar patterns. Bipolar people will have (roughly) oscillating moods. The median can be anywhere, so don't assume that a person isn't bipolar if they never show mania, or never show depression. The key is that oscillation. Asperger people will (often) also have larger mood-swings than normal, but these won't (necessarily) be periodic. They can be completely random, and that's one clue as to whether it's an autistic or bipolar phenomina.
- Asperger people are often pattern-oriented. Anything that disrupts routine will produce a feeling of panic. (The routine can be "change", but that change will typically be at a constant rate, or have some constant component. The problem is not change, per se, but the "failure" of -some- constant, at -some- level.) On the other hand, anything that involves patterned thinking (eg: programming in a re-usable style, cooking/baking/brewing, architecture, etc) are all absolute bliss to an Asperger, and they will typically concentrate on those areas. Asperger people will often be involved in these types of activity for both work and recreation, avoiding anything that requires frequent rapid shifting from one mind state to another.
- Autistic people in general (and, again, this is part of why it's viewed as a spectrum) will have a phenominal, but very selective, memory. Many people file or throw away tech manuals. Some because they don't think they need them, others because they can't understand them. Asperger and Higher Functioning Austistic people may well do the same, but if they do, it's usually because they could write a better manual in their sleep.
- Finally, Autistic people are generally either hoarders or keep places phenominally clean. So, in the above case, they may well have boxes of dusty, unread manuals for products they don't even have any more.
- Hoarding things is one way of minimizing change. Plenty of people hoard, though, and it's not all for the same reason. Autistic people may even periodically clear out the junk that's accumulated. The key is "periodic". The odds are, there's a constant element. The way to tell autistic hoarding from other kinds is whether the person becomes seriously stressed if the constant is removed.
- Keeping things meticulous is another way to minimize change. If everything is clean, tidy, in its place, perfect and organized, then the illusion of changelessness can be achieved. Again, not all people who are fanatical cleaners are autistic, and again the key is in how they clean. Spontaneous, random acts of cleaning are not typical of an autistic person. If it's truly obsessive, it's much more likely somewhere in the realm of OCD. If it's more a case of "hey, this needs doing", then it's just being a regular person. Mechanical, methodical, patterned behaviour is much more typical of autistic people, and is where the name originates.
In short, autistic people often have problems interpreting variable sensory data (usually visual), but are often much better than average interpreting constant sensory data. They have problems with variable conditions, but are often much better able to utilize constant conditions.
The autistic spectrum can then be defined as being a measure of the level of "constant-ness" a person needs to function.
Low-functioning autism requires a very high degree of constant-ness. Almost no variability is possible. Their lack of ability to function is in part because the world is too "noisy" - too much change, all the time - and because functioning is itself adding to that change.
The more variability you can cope with, the more "functional" the autistic person is deemed to be. This goes through various labels, but ends up with "Aspergers", where the person is actually able to exploit the properties of their condition to function and to live.
Not everyone who likes consistancy is autistic, and some people actually have phobias of change which are totally unrelated to this condition.
Also, not everyone who has a perfect ear for music, or a perfect eye for detail, is autistic, and there are plenty of artists in all fields who have achieved legendary status without being the least bit autistic.
This is why these are not diagnostic tools. But because these types of characteristic are so common with autism, they can be used to check that someone else's diagnosis is correct.
If you're diagnosed as autistic, aspergers or anything related, but create or enjoy a lot of variability then there's a good chance the diagnosis is incorrect, and it should be re-examined. "A lot" is defined by where you're placed in the spectrum. For an LFA, "a lot" can be someone walking across the room. For Asperger people, you might not even be close to "a lot" in the middle of a rampaging mob of a hundred thousand rioting social workers. All you know is that there's an upper limit, and once you hit that, your reaction will be disproportionate, sudden and reflexive.
However, if your upper limit is sufficiently high that most normal change just doesn't faze you at all, then for all intents and purposes, you are not on the autistic spectrum.
This is not an exact science, there are going to be exceptions, but over-diagnosis is just as much of a problem as under-diagnosis. If, when you go through the check-list above, you simply don't see you, then question the psych. Determine with them if they made a mistake, or if maybe you are one of those exceptions.
If the psych won't talk, or won't reconsider, then change psych. Sure, you can always find someone who'll give you the answer you want, but the idea here has nothing to do with finding one who'll agree with you. The idea is to find one who'll back their conclusions with more than a "cos I say so", and who is willing to actually show they know what they're talking about.
The tests above, then, are as much to test the psych as to test you. If the psych will neither accept nor talk to you about any of the facets I listed, then you might as well be diagnosed by i-ching, for all the good it'll do you. There's nothing useful in a term, if the term isn't backed by a reason and a reasoned response. If you've anything less, then just invent your own words and call yourself those, instead. They'll mean as much, medically, and at least then you can pick words you like.
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