Aethelread is not autistic…probably

In my last post, I made passing reference to the fact that, as a teenager, I had been investigated for autism, and had been found to be ‘normal…probably’, at least so far as that condition was concerned.  J Wibble left a comment suggesting that I might like to have a go at a test that purports to measure my AQ (Autistic Quotient – so far as I can gather, the extent to which I display autism-like behaviour).  Well, I gave the test a go, and I scored 30.

This is quite a bit more than the average score for the normals – 16.4 – and fractionally less than the average score amongst people who have been diagnosed with an Autistic Spectrum Disorder – 32.  Based on these results (which are from a self-administered test, and as such actually prove nothing, except that I like doing self-assessment tests on the internet) I guess it would make sense to group me with the autistics rather than the normals.  But, here’s the thing: despite that, I still don’t think I’m autistic…probably.  Allow me to explain.

To begin with, I think I have to put some faith in the fact that I was put through a formal assessment when I was a teenager, and it was relayed to me then that I wasn’t autistic…probably.  What I was specifically told was that some things in my test results suggested fairly strongly that I might be autistic, but other things suggested just as strongly that I couldn’t be.  I’m not certain, but I think I read somewhere that at that time (this was away back when walkman-wearing dinosaurs roamed the earth: the mid 80s) autism wasn’t so much thought of as a spectrum disorder, but as something with a stable and fixed symptom profile.  I’m not certain, therefore, if these days the same test results might have attracted an ASD diagnosis, even if it was clear that I was too high-functioning to have ‘classic’ autism, and didn’t have the characteristic features associated with Asperger Syndrome.  That said, I’ve always been inclined to think that the conclusion of ‘not autistic…probably’ was the right one.

Let’s look at the things about me that might suggest autism, and the reasons why I think they don’t.

  • It’s true that I’m horribly uncomfortable in social situations, but that’s very probably just simple anxiety.  It’s also true that I tend to find it hard to work out where and how to join in group conversations, with the result that I tend to sit them out, even when I’m no longer feeling anxious (i.e., have drunk enough to be feeling slightly squiffy).  That’s harder, I think, to define in terms of anxiety: but, then again, there are plenty of people who tend to be a listener in company and a talker in private, and not all of them can be autistic.
  • I do have a strong preference for my own company, and have had since I was a child (basing that partly on my own memories, and partly on things older family members have said) – but being a loner is not necessarily equivalent to being autistic.
  • Pretty much my whole life is made up of routines, and I do dislike having them disturbed, and become anxious when I can’t follow them; for example, if I have an appointment in the morning, I’ll always choose to get up in time to follow my usual ‘morning routine’ before leaving the flat, even if that involves setting the alarm, as it sometimes has, for 4am.  On the other hand, I coped with a greatly truncated version of that routine when I was in work, so it would be more accurate to say I have a strong preference for following the lengthy version of the routine, not that I can’t cope without it.  And that pattern of behaviour could just as easily suggest mild OCD tendencies (which I have in regard to other things, like hand-washing) as autism.
  • I do find certain kinds of repetitive behaviour comforting – counting my coin collection into neat piles of equal value arranged in a grid pattern, for example, or carefully tearing a piece of paper into smaller and smaller sections of equal size – but are those ritualistic behaviours, or just something like a form of meditation, a way of focusing on something other than my anxiety, and so diminishing it?  To me, they feel a lot like the relaxation techniques I was taught as a teenager, like focussing on my breath, or counting slowly backward from 100.
  • There are things I’m interested in that other people find decidedly dull.  I’m fascinated by packaging, especially cardboard boxes, and have been since I used to carry discarded cartons home from outside the supermarket and collect matchboxes as a kid.  Even now, I never throw away an interesting or unusual box, even though, sometimes, I’ve thrown away the thing that came in the box.  But packaging is interesting, in historical (what did old Oxo packets look like?) and sociological (what does the design of the packaging suggest about the people expected to buy the product?) and technological (how do they make that do that?) ways.  The fact I can see the interest when not everyone can maybe makes me some species of geek, but not necessarily autistic.  (Or am I rationalising after the fact?)
  • (I’m not really sure this deserves a bullet-point, but I am aware that I strike other people as odd (even a psychiatrist), and I’ve seen ‘seems odd’ listed in field-guides for teachers and other non-professional autism-spotters.  But my mental interestingness is enough on it’s own to make me seem a little odd, I think, and in any case a criterion like ‘seems odd’ is so vague as to risk pathologising pretty much everyone.)

Personally, I’d not be inclined to see any of this as definitive evidence of autism, especially when there are things that suggest the opposite:

  • So far as I know, there was no delay in me learning to speak.  I was slightly late learning to read and write, but that was as much to do with lousy teaching as anything else; in the end, my parents taught me to read.
  • I don’t have a problem empathising with/ understanding what other people are thinking/ feeling – in fact, if anything, I have the opposite problem, and tend to over-empathise
  • I’m not aware of any difficulty interpreting non-verbal communication (i.e. I feel like I can ‘read’ people’s expressions and gestures pretty well, and no-one’s ever told me I’m really slow on the uptake)
  • I don’t have a problem understanding irony, sarcasm or humour in general – in fact, I tend to pick up on sarcasm and irony more readily than other people, and I use it a lot myself, as you’ll know if you’ve followed this blog for a while.

For me, though, the real clincher is that I knew someone with Asperger (call him…Norman) in real life, and I know that I’m fairly different to him as a person, and also that I didn’t (and don’t) have the same difficulties he did.

I became friends with Norman at 6th form college, I think partly because I knew who Sir Nigel Gresley was, even if I couldn’t list all the locomotives he designed (I know, what a stereotype – the train-obsessed Aspie – but it’s true).  It’s the case that we became friends sort-of by default – we were the ones who sat quietly nursing a coffee waiting for lessons to start while everyone else was having hilarious group conversations in the middle of the common room – but that’s not to say we were excluded (or excluded ourselves) for the same reasons.  If he felt under pressure to be sociable, for example, Norman had some speech problems, and he could respond aggressively to people who tried to talk to him (including, sometimes, me).  Next to Norman it was always pretty obvious that I was just shy.

So, as I say, I’m still fairly convinced that I’m not really on the autistic spectrum.  And the thing is, even if I am, I’m not really sure what difference getting a formal diagnosis would make.  It’s clear that if I do fit on it somewhere then I’m very much towards the ‘high-functioning’ end, so much so that I would probably gain little benefit from any interventions that resulted from the diagnosis.  So I think, all in all, I’ll treat that online test as  an interesting and fun diversion, and carry on making my way through life without having that particular label stamped on my forehead.

(That’s assuming, of course, that I haven’t already been provisionally diagnosed as autistic.  As some of you may recall, my psychiatrist described my difficulties and then suggested that ‘some people are just like that’.  I’ve always worked on the assumption he was fitting me up for some kind of personality disorder, but the references to my ‘struggle’ to understand other people and to have them understand me (not to mention the fact that he called me ‘odd’), would fit into a narrative of autism, too.  In fact, I’m fairly sure the possibility of an ASD diagnosis has been raised in the comments here a couple of times – by people who have such diagnoses themselves, and recognised the language that was being used by people as they talked about my difficulties – but I haven’t been able to track those comments down.  I don’t think I imagined them, though.)

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5 Responses to Aethelread is not autistic…probably

  1. Clare says:

    I know the AQ. It’s a screening test that professionals use before the assessment, to decide whether it’s worth assessing you at all. Nobody bases a diagnosis of autism on the result as there are several other conditions out there that also cause you to get a high score – depression, schizophrenia, social phobia, and a whole bunch of others. The AQ has to be scored against some other pre-assessment questionnaires that your parents fill in. I was diagnosed with Asperger’s Syndrome as a child, but I’ve been a participant in research projects that used the AQ, which is how I’m familiar with all this.

    People with autism can differ from one another quite significantly. My AS is classed as moderate to severe, and I went to a special school for autistic kids for most of my educational career. You could tell that everybody in the unit had the same condition, but it did manifest differently from person to person. You don’t have to be just like your old friend Norman to be autistic. Then again, if you had a full assessment as a child and got told you weren’t autistic then it’s pretty unlikely that you’re on the spectrum.

  2. aethelreadtheunread says:

    Hi Clare, and thanks for commenting. :o)

  3. Interesting.

    I would agree with Clare that I don’t think everyone with whatever flavour of ASD will be the same. You could both be weird in different ways! ;) That said, if you were assessed properly when you were young, even if it was before all the latest research, then you probably don’t meet a full diagnosis.

    That said, you do seem to have some tendancies that would lean that way, but as you say, I think a lot could be explained by general mentalism/anxiety/shyness etc.

    You are probably right that it doesn’t really matter either way. It is unlikely to change things much.

    Interestingly – I did the test and scored 20. So higher than “normal” but not up near the threshold. I think that just shows my anxiety and inner geek though.

    It has been mentioned that my mother may be on the spectrum. My old psych was aware of the struggle I have with my relationship with my mother and we had a meeting with both my parents. In the short one hour session in which she met my mother, my psych had enough of a suspicion to tell me that she felt that a lot of her weirdness could actually be autism. I didn’t know that much about it at the time and did a bit of research and decided that it was definitely a possibility as she certainly met a lot of the criteria I read about. I decided to fill in the above just now, answering how I would think my mother would answer or at least how she should if she was being honest with herself. The score was well above 40. Not sure how much use knowing that is though. It is not like I can just tell her I think she may be. I have no idea what use a diagnosis would be to her either.

    I wonder though if that may explain my score being just a little over normal – adopting some of her traits.

    hmm.. long comment lacking usefulness – sorry!

  4. beetrootsoup says:

    Interesting stuff Aethelread. You said at one point that you’can’t write about yourself’ but when you do I find it fascinating. I want to go and do the AQ test now! Hope you doing well, lots love Zoe

  5. rachel says:

    I got 8, even though I’ve eaten the same thing for lunch for about 9 months!

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