I’ve been meaning for a while to write about how I fit with the symptoms of Asperger’s Syndrome/high functioning autism.  I’ve had two formal assessments, which said I wasn’t on the spectrum, but on the other hand, my former psychiatrist said I was.  She didn’t do a formal assessment (and by that stage in my treatment she was saying some unhelpful things e.g. “You’re on the autistic spectrum, so you’re never going to understand people and you should stop trying”), but she had seen me for a long time by then.  Looking at the report from the assessment I had in September 2006 at the Maudsley Hospital, they found no significant symptoms of any developmental disorder whatsoever.  On the other hand, I find when people write about their experience of autism or Asperger’s Syndrome online, I find I share a lot of the experiences and difficulties and when people on the spectrum have produced their own lists of the symptoms that they consider significant, I tend to score more highly.

It is hard to know what to think about this.  I tend to respect the opinion of medical professionals (unlike some people I have encountered on the spectrum, who insist that psychologists have no real knowledge of the experience of autism and are just trying to pathologise people for neurological variation).  On the other hand, since childhood (maybe not early childhood though) I have felt ‘different’ and not just because of my mental health issues, which came later.

I really do feel I think differently to other people, that I have genuine problems with socialising, making eye contact and making small talk (which bores me).  I don’t speak in a monotone, but my voice sometimes seems to come across as flatter than I intend, which sometimes makes me sound angry when I’m not (I was often told off by my parents as a child for looking or sounding angry when it was not my intention).  I can understand non-literal language, but I do like taking idioms literally for humorous reasons.  I learnt to read early and have always been an avid reader with a vocabulary that was in advance of my years, but I can be quite pedantic about language use, although I have learnt to be less so in recent years.

I much prefer interacting one-to-one or in small groups to big ones, although this could be introversion or social anxiety.  I think I get sensory overload sometimes, particularly at busy restaurants and parties (if I can’t avoid going to them) and I think I do stim in various ways, mostly fairly subtle, although there may have been a stimming aspect to my self-harming when the depression is bad.  I’m not sensitive to normal levels of light or sound, but I can’t sleep with the light on (noise is fine; my flat backs on to the A41 and I have no problem with the traffic noise, but the light from my neighbour’s security light, even with blackout blinds, makes it hard for me to sleep and I use an eye-mask).

I have a strong interest in Doctor Who and can reel off lots of lists about it (episode titles, writers, producers etc.).  I’m probably less interested than I used to be, but as a child it was an all-consuming interest.  Judaism might also count as a special interest, albeit a more socially acceptable one where one is actively encouraged to learn, memorise and think about information.

I’m not clumsy, but have never had great hand-to-eye coordination.

I get stressed or even panicked if I have to deviate from my routines.  I think part of me likes to create systematic theories about things that interest me, even as another part is aware that these theories are often not true, or at least simplistic; I certainly love order and clarity.  I can concentrate on things that matter to me to the exclusion of all else for long periods.

I don’t know how I fit in with empathy.  I can feel a lot of empathy for, say, things on the news, particularly anything involving children.  On the other hand, sometimes it is hard to empathise with my family if they are complaining of something I feel is trivial.  Also, even when I do empathise, it is hard to know what to do or say to make someone feel better.  I remember when I was a child and we were on holiday.  I was in bed and my mother leant over me to kiss me goodnight and hit her head on a low beam.  I knew she was in pain, but I didn’t know what to do and my Mum got annoyed with me for not hugging her, which did not occur to me.

I do find it hard to recognise my own emotions, as my therapist pointed out to me.  It’s hard to tell how much is not knowing what I feel and how much is the depression drowning out everything else, especially as I’ve probably been depressed since my mid-teens (at least).  I suspect that at times I have a maelstrom of negative emotions in which it’s hard to identify particular feelings, so I just tell people I’m depressed (by “people” I mean my parents and my therapist and maybe my sister, as I don’t tell other people how I’m really feeling).  I do cry sometimes without knowing why, including at work, but that’s probably the depression again.

It is very confusing to know what to do with all of this.  It clearly is important to me to think of myself as potentially being on the spectrum, because I still go on about it eleven years after being told that I’m not on it.  I used to say that it was enough that I know who I am without having a label, but I think I do want a label.  I guess some of it is the desire for neatness and being systematic, to know for sure who I am.  Some of it comes from worries about dating, feeling I should tell the shadchanit (matchmaker) everything about me and therefore needing to know where I stand as well as wondering if I would be a good match for a woman on the spectrum.  Less positively, perhaps part of me wants an excuse to feel bad about my difficulties socialising and my burn out afterwards (although my depression and social anxieties arguably already provide this).

I would particularly like to hear from other people on the spectrum about this post.  Please do comment!

(Ideas about autistic traits from people on the spectrum from here and here.  I also found this useful.)

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5 thoughts on “Asperger’s Syndrome and Me

  1. I’m self-diagnosed, because I’ve never been able to get an actual diagnosis of Asperger’s. I don’t know what good it’d do me now as a 30-something who has missed the boat, but it might prevent “wrong diagnoses” from occurring and it might allow me certain protections when I re-enter the workforce. I struggle with many of the same issues, particularly when it comes to social skills and getting very stressed out by any change in routine / situation.

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  2. I’m sorry that you have similar issues. I’m not sure what wrong diagnoses it would prevent, but I can see why you would want protection in the workplace, that would seem like one of the biggest incentives to getting diagnosed.

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  3. There is so much of me that ?I see here, plus some things you said that I had not previously realised/remembered, but when ?I read, thought, ‘oh my, that too!’ which was a very good(in the sense of reassuring) feeling….

    ”I was often told off by my parents as a child for looking or sounding angry when it was not my intention”

    That was a real flashback…..and as an adult, too. I remember my mother saying ”But why are you so *angry*, Cal?”(her nickname for me, which I loathed)….and I wasn’t, stall…..just bantering with my husband.

    And I was an early reader, too…..I have a very fond memory of my grandmother (I was very close to her…..lived with her till I was five, then saw her every day) holding my hand, when I was four, as we walked down to the tiny local library in the east end estate where we lived(I mention that to make the point that reading wasn’t much of a popular activity in that area. We were considered outsiders, for the most part, though accepted (which we were, really – outsiders – it was the sort of place where generations lived snd had lived; my grandparents ended up there purely by chance, it being the place my grandfather was sent when he retired )

    Anyway, Nin – my grandmother – took me to join the library. I was four, and they didn’t allow membership till five, but they made an exception for me because she was a regular and a friend of the librarian snd assistants. It’s a memory I treasure. Most of my early memories are if my grandparents…..very few of my parents. That came later, and for the most part weren’t good ones, but that’s nother story.

    I’m self diagnosed, in my 60s, and dont feel a need to pursue a formal diagnosis….being retired, a pensioner, and pretty much pleasing myself these days, Im OK with it being that way. Different if I was still working, perhaps, but that’s hypothetical. I’ve had comments such as ”Oh, you can’t be ……you can make eye contact”(which is actually not true …..well, I can, just about, when I really have to – I’ve learned to – but it takes a lot out of me, I hate doing it(much as you describe)and find it very difficult. Years ago I learned that if i take off my glasses, people seem to think ?I’m doing it. When in fact I’m not – just looking in their general direction, as ‘I’m extremely short sighted and am basically looking at a kind of scifi blob shape rather than the actual person. It seems to work ( though ?I shouldn’t have to…..these days I feel more snd more that that I shouldn’t have to force myself to fit in for the sake of social expectation, in things like that. I am as I am, and it isn’t ‘wrong’. I accept myself, I’m not hurting anyone else, so, let them accept me too……

    Finding it hard to recognise my emotions, how I feel – yes! Another realisation. Thank you again. And much more, but I dont want to go on too much…..

    Hoping this isn’t too long and rambly. You really got me thinking, and it helped to read your words on this. Very much. And apologies for any typos etc…..don’t have the concentration to go over things (lose track easily, but that’s ‘stroke brain’ more than autism/Asperger’s, or a bit of both, perhaps. And ME brain fog, too. Quite a pot of soup, my head is…..)

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