The art of autistic self-hood

June 1, 2016 § 21 Comments

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(Uncertain Weather System in Place, 2016)

 

As there seems to be no specific aftercare following my diagnosis of Asperger Syndrome, I’m quite busy working things out for myself.

Fortunately for me this is one of my autistic strengths.

But specialist services would make a huge difference to my life. So going it alone is not entirely desirable, and yet I consider the alternatives. Would I want aftercare designed and provided by neurotypicals? Perhaps not.

It would probably end up feeling like wearing the wrong size shoes. A bad fit.

One effect of diagnosis is that I now recognise my dislike of most organised/group activities as being legitimate. It’s a genuine case of poor neurological fit. What you (the neurotypcial majority) generally like/need from a group experience is not what I like/need – I honestly just can’t relate to most of it. And with good reason.

But this can also happen to me when faced with #actuallyautistic events that somewhat resemble neurotypical ones. Please, please don’t take offence, but an autistic pride picnic in Hyde Park (I hear there’s one coming up in June) isn’t for me. Not that I am not proud to be autistic – I AM. But I don’t want to gather in Hyde Park.

There exist three main reasons for this – all autistic.

1/ Travel is stressful.

2/ I don’t like meeting with strangers (especially en masse).

3/ I have no way of predicting the fine details of the day.

But I have to confess that it isn’t just dealing with the resulting overload that puts me off. I also experience a creeping dread of what I will call neurotypical templates. Subjected to them forevermore – think all school, college and most work settings for starters – I feel nothing short of magnetic repulsion for any event which resembles these formats. Neurotypical templates for group fun or even group displays of pride seem to have the same effect.

And so I ask myself what autistic templates might look like – and I get no clear answers. I just know I don’t want more of the same. Too many uncomfortable associations, too much time spent in exhaustion and recovery. I want my time to count, and I want my pride to show without the usual consequences for me.

Pride in a sense – in my sense of it – is about saying NO. No to neurotypically designed social spaces. Pride, surely, must contain some measure of self-care too.

With this in mind, ( while hoping fervently that the autistic people attending this year’s pride event have a blast) I will be sharing my pride online.

 

 

 

 

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§ 21 Responses to The art of autistic self-hood

  • VisualVox says:

    Sounds reasonable to me. I always have to wonder about these sorts of things – if it’s an attempt to show “See? We’re like you (and hence are just as deserving of respect)”. I don’t know about you, but for me, realizing my differences makes it all the more important to eschew that kind of thing. I’ve spent too many years trying to “shoehorn” myself into them before I knew what’s what.

    And I don’t need affirmation and validation for replicating the norm — just in my own different pattern. It’s subtly undermining. I won’t do it.

    Don’t get me wrong – I applaud folks who are into that (and why wouldn’t there be at least some, since we’re talking about a spectrum?) But it strikes me as ironic that a group gathering in an large open space would be the way to show autistic pride.

    Liked by 2 people

  • soniaboue says:

    Thank goodness! I really like the way you put this. I find it baffling that people want to do this but hey, we are a spectrum as you say!! Check the location it’s overwhelming in all senses! Even getting there is a challenge.

    Like

  • […] Read more at The art of autistic self-hood — The other side […]

    Liked by 1 person

  • hannahkenway says:

    I can’t bear big group gatherings – I’m not sure if this is an ASD thing or just personal preference. Whichever, it does seem somehow ironic that autism pride is celebrated in this way which is surely stress inducing for the majority of those affected!

    Liked by 1 person

  • See, I completely relate to you with this one. My family are part of a local autistic group which organizes social gatherings for autistic people and their families. One of their bright ideas recently was to create an evening for autistic teens and adults (16+). I wasn’t really fussed about the idea, in fact I was pretty adamant that I didn’t want to attend, but my mum’s close with the people who made the event and wanted to “show her support” and thus, her autistic children were dragged along. It turns out I was right and I didn’t enjoy the event at all, no matter how many autistic people I was surrounded with. Instead of interacting with them I sat in the corner with my little brother and bugged my mum until she eventually gave in and took her home.
    Whilst I understand the desperation to get autistic people socializing for the outside world not to see us as antisocial, I don’t understand why this has to be forced socialization in larger groups, and why it can’t be done by choice, as I have done throughout my life. Who cares if it isn’t up to neurotypical standards? I sure don’t.
    (Sorry, I’ve completely taken over and ranted here, feel free to ignore. In short, I agree with you completely. Great blog post!)

    Liked by 2 people

    • soniaboue says:

      Thank you Rebekah – I loved hearing about your experiences, and I’m sorry that this happened to you. It’s very hard for people to get that we don’t necessarily enjoy what they think we should. I get exactly what you mean, and thank you for reading my blog post and your nice comment on it! Sonia x

      Liked by 1 person

  • alexforshaw says:

    I’d feel exactly the same about an event such as the Hyde Park one. I hate travelling into London at the best of times, and once I’m there I usually just look forward to leaving. And the thought of being surrounded by strangers is not a pleasant prospect.

    I’m trying to think about the kinds of events that would suit my temperament, but without much success yet. Something small, low-key, quiet and with people I already know–not really a group event at all!

    I always used to handle the kinds of event that fit a neurotypical template by drinking: that was my coping strategy. Not ideal and ultimately harmful: I choose not to do that any more. Instead I tend to avoid such situations.

    Liked by 1 person

  • Reblogged this on bunnyhopscotch and commented:
    Again, Sonia has nailed it right where it should be: “neurotypical templates” !!! This explains my discomfort with many activities geared towards autism. We (autistics) need to develop autistic templates. Not that templates are fail proof, but the fundamental modalities need to be native-derived. That is the quest that I have undertaken for my research and praxis. Thank you, Sonia, you’ve again inspired me!

    Like

  • Spent my life avoiding groups/gatherings and gritting my teeth through things I couldn’t avoid.

    Recently understood my autistic status and was referred to a social group for asperger peeps.
    Could not get my head around why I was (along with my also autistic husband) sitting in a room with mostly young adults drinking a cup of tea (I don’t really like tea but I have learned to drink it in company ala Sheldon Cooper hot beverage social interaction protocol) with whom I had little in common and as far as I could work out no common goals and certainly no specific reason for us to work towards.

    It reminded me of youth club when I was in my teens (I’m now 54!!!) but I had a purpose back then= Spend time away from my parents/boring home and try and get a boyfriend + learn how to ‘mix’ with people.

    At 54 I am superlative at mixing with people and socialising which is why it took until now to realise I am autistic. It takes up all my energy and resources ‘faking neurotypical’ and I’ve been doing it forever without realising that it was happening.

    I found spending time with strangers who are autistic seems to make the ‘faking neurotypical’ kick in even harder if anything as I’ve been doing it for my family members who are autistic as somebody needs to be the peacemaker/organiser – or at least that is how my family dynamic works.

    So neurotypical activities with autistic people I don’t know just makes the whole thing worse because on top of doing stuf that doesn’t make sense to me I am now doing them with people I can’t predict and they aren’t even people I love and who love me so there’s no sense of safety net if things go haywire. I have no idea why I would repeat that experience. My husband has the same opinion – we are very alike after over twenty five years together.

    I think my personal template for an event I’d enjoy would be something like a socialising version of speed dating. Speed friending: where I’d get to spend 15 minutes with one person talking to them based on a list of interview questions and then a bell going and us moving onto someone else. At the end of the event I’d then feel like I had more of an idea of who I liked and had a connection with and after that possibly would be better equipped to handle a multi-person situation.

    I like one to one socialising but group-type stuff freaks me out especially if it is unscripted. Yet I’m fine delivering information or teaching people in a group. I suppose it all boils down to feeling in control. I can’t see how that can be achieved for everyone if they are in an unscripted social group situation.

    When I was young I enjoyed crowds but back then I had the energy reserves to bounce back from them, these days my fight or flight has been full-on for decades and my ‘elastic’ doesn’t bounce back it snaps and I collapse in a heap afterwards and need days of recuperation.

    Liked by 2 people

  • SZ says:

    Love it! “creeping dread of what I will call neurotypical templates. Subjected to them forevermore – think all school, college and most work settings for starters – I feel nothing short of magnetic repulsion for any event which resembles these formats” …oh so true! So many times I have deeply groaned inside when these types of get togethers are suggested – the latest was golf with a meal thrown in!!! (team building) I think some NTs might have actually found this too much. But there’s basically TOO MUCH of what NT people think of as enjoyment.

    Liked by 2 people

  • Shannon says:

    I found this via the GRASP Facebook page, and I’m so glad that I did. I feel as though your words mirror my own thoughts and experiences completely. I was recently diagnosed (at age 32) with Aspergers after years of misdiagnosis. Though there was a relief after my diagnosis, there was also a tremendous feeling of “What now?” I don’t do group therapy (or group anything, for that matter) – so most of my “therapy” is done via my own online research and occasional writings in my own blog. In a world where I normally feel quite alone, it’s nice to feel that for once, I am not. Thank you for that.

    Liked by 1 person

  • Aspetrix says:

    Great post. Personally I would rather cut off my own arm than stand around at an organised gathering to celebrate pride in anything in Hyde Park with strangers.

    Even pre-diagnosis I always instinctively shied away from large protests or demonstrations (even about causes that mattered to me) or large festivals (even if bands I liked were playing). It’s the type of activity I just knew I was incompatible with, yet is one of the hardest things to explain to NT friends and relatives.

    What we clearly need is a plurality of events and formats, we are all different of course. Similar to someone above, I have one child who is autistic who loves crowds and busy social events – or at least he loves the idea of them and deals with the fallout afterwards. It’s hard to find a dividing line between doing something that sounds like fun and good self care.

    Also I’m curious whether other things could be experimented with – group meetings but in a pub with low lighting, a pre-arranged duration and format, and no music, for example, would be way more acceptable to some.

    Liked by 1 person

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