On not having Asperger’s

I get stressed about dealing with people, sometimes. Very stressed. I mean, a lot of the day-to-day stuff I can deal with, it’s usually fairly predictable and routine and it’s fine, but when it falls outside of that, or if there’s some conflict which I’m not mentally prepared for, or if I say the wrong thing to someone or misjudge a social interaction, then things can get stressful, and I can get weird (to say the least). I mean, a small social interaction where I think that maybe I misjudged it or did the wrong thing, can leave me breaking out in a sweat with rising panic. I’m more aware of the grimacing and knuckle-chewing these days and flapping my arms about, so I can catch that and hide it from the world, and I have to watch out for the defensive flash of rage (and the terrible adventures that could be started as a result). Now, all of this is not nearly so bad when I have the energy and focus to intercept all of this, because then I can catch it, handle it, fix it, leave everyone happy; but what happens when I don’t? What if I’m distracted or tired, or already stressed? Well, then. That’s a party. And really, all I’m thinking is that I want everyone, everyone, to go away and leave me alone. I say this quite a bit, actually. Out loud. I had presumed that everyone does this, but apparently not…

Anyway, there was this phrase I had come across some time ago, which was “How do I adult”, which had struck me as amusing (as a sort of a benchmark of people who have to ask themselves how to go about being adults when they wake up in the morning) and which I had come across in a web column/blog, probably on Yahoo! or AOL, and which for some reason last year, I decided I would have to track down again, just on a whim. I didn’t find it. However, I did find something considerably more interesting, which was this: https://aspergersandmeblog.wordpress.com/. It’s a blog by a woman who is “an adult woman on the autism spectrum, diagnosed as an adult” – with what used to be defined as ‘Asperger’s Syndrome‘, in the ‘Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition’ – and who writes about her experiences in the world. In the context of her experience, ‘How Do I Adult’ is a real thing, something that takes work, to interact with people.

Something in the experiences that she related and her writing pulled me in and led me to read some more, and from there led to looking up some more, and to thinking about doing tests for Asperger’s. At that point, I really thought, how can a person be diagnosed as having Asperger’s as an adult? Isn’t it obvious long before then? I came next to this page: Life on the Spectrum – Online Tests which has links to a load of different tests (I took a few, but we’ll get to that in a moment). I had already done the Wired AQ Test a couple of years back, and scored highly, but given that I’m a web developer and I had done the test during the day, I saw that as expected (it has a related, sensationalist article about the incidence of austism in Silicon Valley – should them there programmerers be making babies? *1). I did the Wired AQ Test again, and scored exactly the same. That score put me comfortably in a zone shared by people who very probably have Asperger’s. I did read up a little this time about the background, and of course as an area of study it isn’t short of controversy. The Wired AQ test is based on work by psychologist Simon Baron-Cohen (his cousin is Sacha Baron-Cohen: Ali G) and his colleagues at Cambridge’s Autism Research Centre, and his views seem to be considered to be controversial.

Next up was the intriguing RDOS Aspie Quiz. With it there was also a link to a review of this test which led me to http://musingsofanaspie.com/ – where a blogger with Asperger’s took it upon herself to do reviews of the various online tests, and write about what she thought about them, along with plenty of posts of getting and living with an adult diagnosis of Asperger’s (or indeed autism). It’s a good read, actually. The RDOS Aspie Quiz is interesting, because the premise behind it is bordering on solid woo (Asperger’s is caused by Neanderthal genes which supposedly help with hunting *2), although I’m not qualified to say whether or not it actually is. However, the result is a quiz which is apparently excellent and very informative regardless, having evolved over time into a well-regarded test which results in a radar chart rather than a score, showing various metrics, and then two numbers, one for an ‘Aspie’ score and one for a neurotypical score. The profile that results indicates whether you have a profile like someone who has Asperger’s or not. It’s an interesting way to present a result, even if the premise means that there is unfortunately little credibility for it.

However, you can probably guess where I landed on that and the result of that quiz was very telling. I had a couple of other people take the test as a control, and indeed they profiled inversely to me. I made a point of waiting until I was out of the office, relaxed and not looking at any code, and yet, there it was. I also did a different implementation of the Baron-Cohen test at http://personality-testing.info/tests/EQSQ.php and again, it scored very much in the direction of Asperger’s Syndrome. I went on to read some more about it (true to form, somewhat obsessively) and of course it was possible to find a lot of very familiar attributes in the various lists of criteria that exist, of which I could say in varying degrees, “Yes, that’s me too!” *3. However, I can also do online tests and quizzes that definitively identify which ‘Game of Thrones’ character I am, or which 80s song I am. That doesn’t mean I should approach George RR Martin to find out more about my fate or what have you, it just means that someone has a categorisation system, and has arbitrarily put me into a category. Mind you, if Simon Baron-Cohen puts a test up and I do it and the result suggests that I probably have Asperger’s, then I should pay attention, because he is a renowned authority on the subject.

There’s also the matter of the criteria by which Asperger’s Syndrome is diagnosed, and therein lies another problem of self-diagnosis, which is false identification of conditions. It’s a common phenomenon of the Internet, for people to look up conditions and rapidly establish that they have all sorts of ailments which in reality they don’t have. For example: I have myasthenia gravis, an autoimmune/neuromuscular disorder which is tricky to diagnose. I can imagine, however, that there are people who have identified one or other of the symptoms in themselves, and followed on by convincing themselves that they have myasthenia gravis, which for one reason or another might appeal to someone as a particularly exotic ailment to have. Anyone who genuinely has Coeliac disease will know about this kind of effect, to the point where some people don’t even think it exists *4. And we’re not even getting into actual hypochondria with this, just diagnostic cherry-picking. I’m not, if you’ll pardon the pun, immune to this either; I could be identifying with a set of criteria, and giving myself a ‘free pass’ on what is in fact within the normal range of personality traits or worse still, simply social bad behaviour which could be mitigated by learning to behave differently. Against that, I can weight the lifelong catalogue of incidents and episodes, behaviours and issues which previously had no coherent or tenable explanation, and above all, the actual jibes about being autistic based on my reactions or behaviour in various situations.

I went on to call Aspire Ireland, the Irish Aperger’s Syndrome support group to see what I could or should do next. They were very helpful, and a conversation with the girl there did involve a number of questions for which the answers were telling, and the recommendation was to call and perhaps see one of the psychologists that they had listed on their site about getting a diagnosis. I called them. However, that was a bit disappointing, because they were gently discouraging (some of it amounted to ‘Why don’t you go and read a book about it?’), not particularly interested (I’m an adult with a good job, I can use a phone and work with people, I’m married, so what’s my problem, really?) and if I did go ahead and get a test done then it would quickly go north of €700. I could see part of the problem: The resources for this sort of thing are limited, and if it comes between a guy approaching middle age for whom things don’t seem to be going particularly badly, and a teenager who literally can’t cope with going to school or college or facing the world, then I shouldn’t even get a look in, and I understand that. There are people whose needs are greater, and for me it’s a matter of getting a diagnosis that is not going to have a big tangible effect *5. They also painted it as a more extreme set of traits, so the fact that I had a job or could manage to make a phone call without freaking out was for them an indication that I probably didn’t have Asperger’s at all.

There is, I was told, a joke in autism specialist circles which is this: The autism spectrum runs from autism to male. Boom boom. Because it is hard to tell autism apart from normal male behaviour, ha ha.

So I left it at that, because that’s a lot of money to give to specialists who didn’t seem too keen or believed that it was perhaps a bit of a waste of time and money. Everything I had read up to that point didn’t agree with what they had said, but they are professionals in the field, unlike me, and I always believe that you should respect the opinion of experts when engaging in their field of expertise. I’m not really sure what to do next about it. I’m still fairly sure that results of those online tests were not some random accident, and that the narrative genuinely fits with a diagnosis of Asperger’s *6. As an addendum to that, a couple of people felt that there was a strong possibility of a sort of ‘self-fulfilling prophesy theory’, which is to say that if I were to go and get a diagnosis, I would end up having fully-developed Asperger’s, but if I didn’t, then I wouldn’t. To my mind, that seems like a logic loop but I can sort of see where they are going with it.

I don’t have Asperger’s Syndrome. I can only say that I may have it, until such time as I get a diagnosis, but until then, I don’t have Asperger’s Syndrome. I would have written more about the historical narrative, the various indicators which until recently didn’t have a context for me other than being incidents or odd traits, the more recent problems which I’ve encountered, but this might get into the zone of sharing far, far too much. If you know me and you’ve read this far, you may probably have reached some sort of conclusion either way already *7.

  1. Wired was running with an idea at the time that had just breached the mainstream, which was that there was a sudden rise in the number of autistic children in the Silicon Valley region, and that when all these software developers and engineers and scientists are going to work together and then start hooking up and then breeding (because it’s not like they can hook up with normal people, ha ha), there will be a generation of autistic children as a result, and then when they grow up, they’ll be in charge of everything and force everyone else to be weird or who knows what. This would very bad for one reason or another, and not that anyone is suggesting neutering these people or anything, but you know, maybe the norms should keep an eye on them, maybe discourage them from breeding or something. Naturally, this can’t be proven in any way to have been the case, and it veers very close to being a subset of eugenics.
  2. An example of a discussion about the RDOS Aspie quiz with the creator, which highlights why it probably works, and where the credibility problem lies: Undiagnosed Aspie–RDOS Aspie Results Attached (I’ve even experienced the point made near the end of the thread, which is that people with Asperger’s understand some of the questions, while neurotypical people don’t, so the questions act as a filter, even while they may themselves be somewhat meaningless.). tl;dr: Some posters question the science behind the quiz, and the creator gets defensive. Both sides get into circular arguments and fail to find a reasonable middle ground. It clearly works, but it clearly isn’t based on accepted science.
  3. If it amuses you, here is the patient.co.uk description of Asperger’s Syndrome. Or, have a look at the diagnostic criteria for Asperger’s Syndrome, as listed on Wikipedia. Or the newer DSM-5 diagnostic criteria (where Asperger’s doesn’t exist anymore, it is part of a spectrum) on Autism Speaks.
    But this is the older DSM-IV criteria list:
    1. Qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
      4. lack of social or emotional reciprocity
    2. Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects
    3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
    4. There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
    5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
    6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
  4. Coeliac disease is a real autoimmune system disease (It was apparently first diagnosed by the ancient Greeks.) that has serious consequences for people, but is often treated as though it is some form of woo or invented illness. It isn’t. The problem with autoimmune system diseases which don’t cripple people outright is that they are very hard to diagnose, and even harder for people to accept that they exist or should be taken seriously. After all, if you can’t see it, is it really there?
  5. Getting a diagnosis isn’t without financial consequence. For a family with children, a diagnosis for a child can mean getting additional teaching resources (even if it is mild Asperger’s) and moreover, additional welfare payments for a family on welfare. This can be critical for a family where a child has a real problem with autism, because that is no joke at all. It can be a living hell for the rest of the family. On the other hand, it can be subjected to what I can only describe as a ‘shake and try again’ strategy, to try over and over to get a positive diagnosis in order to unlock the money. Yes, it does happen, there are people who do this, even if it isn’t terribly frequent. Don’t tell me it doesn’t happen.
  6. Something that I came across as a theme, is that many adults with Asperger’s have learnt how to hide it over time, getting better at pretending to be like everyone else, learning behaviour and recognising cues in situations by force of intellect. It sounds very familiar to me, because that’s something which I know that I’ve done. Watching people, analysing tone, taking cues from those around me, studying the structure of conversations rather than the content, occasionally getting it all terribly wrong and appearing to be rude or insensitive as a result. It’s balanced out by age and stress. Certainly, I’ve found a marked difference between my behaviour when I’m rested and in control, and when I’m tired or stressed, and as I get older I have less energy to spare.
  7. The alternative explanation is that, in fact, I’m an asshole. There doesn’t seem to be a guiding line between the two, and I doubt that there’s an officially recognised diagnosis for that. Again, I’m quite sure that if you know me then you’ve already reached a conclusion for yourself.