Scenes from an Autistic Childhood

Someone took my seat at shul (synagogue) yesterday.  I didn’t say anything, but I was quite annoyed.  Taking seats is a thorny area in most shuls.  Halakhically (according to Jewish law) one should sit in the same seat in shul every day.  However, one should also be friendly to visitors and new people at shul who don’t know which seats are free and might take one by accident.  Shuls where people throw people out of “their” seats by claiming ownership can get a bad reputation.  So I never know what to do in a situation like this.  I like my seat because I sit with the two people I’m most friendly with in the shul.  I had to sit in a different seat with someone else, which made me a bit uncomfortable.  The silly thing is, the person who took my seat sometimes sits behind me, so I thought he might know that I sit there.  I hope he isn’t planning to make it his seat permanently, especially as the people I sit with actually invited me to sit with them.

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At dinner I had a very long discussion with my parents (a couple of hours long) about autism.  My Mum said she had read the leaflet I lent her and that it sounded a lot like me.  We spoke a lot about childhood events.  My parents didn’t think I really had autistic meltdowns.  They said when I was stress or overwhelmed I would go quiet and go off to the corner or to my room, but I’m not sure if this is really an autistic shutdown.  It doesn’t sound extreme enough.  They felt I avoided the type of situations that might have pushed me into a full-blown meltdown.  I avoided a lot of things as a child and as a teenager.

We spoke about my executive function, which was more textbook.  I said what I wrote here the other day, that I always thought I was organised because I plan, but now I realise I don’t stick to my plans.  My Dad’s response was, “You’re terrible at planning” agreeing that I don’t stick to my plans.  I get distracted from things.  I also spoke about not being good with choices and not liking it when Mum wants me to decide between a lot of things.  If I have to make a big decision e.g. changing my phone contract (something I’ve been putting off for months… procrastination is another trait my Dad brought up), my Mum will love to shop around and get loads of options for me, but I just get overloaded by that.  I prefer to be given a choice of just two or three of the apparently best options and accept that I may miss something even better.

Mum said something interesting about my desire for predictability which I didn’t know.  Apparently when I was young enough that Mum started to let me go out by myself, if Mum was sending me out to do some shopping I would bombard her with questions about what would happen – what should I say, what would the shopkeeper respond, what should I do if the shopkeeper said something else and so on.  She thought it was a bit weird, but as I am her eldest child, she didn’t really have anything to compare it with until my sister came along and was happier with short instructions.  I am still like that.  If I have to do something new, particularly if it involves social interactions, I still plan in detail, but I didn’t realise I did it in such detail from such a young age.

We also discussed my career a bit.  They both think I’ve been much less depressed lately since I started my new job, because I feel I can do it, I feel accepted by my colleagues and I feel my boss understands my issues, which was not always the case in my previous two jobs.  I said I would be happy if my contract was extended past March to stay in this job for a while.  Ideally I would rather be working three days a week rather than two, but I would like to use my non-work days to work on my writing.  They both seemed reasonably happy with that.

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I was really exhausted after this long conversation, but I needed alone time before I could sleep, so I didn’t get to bed until very late, I think after 1.00am.  I actually woke up early this morning and could have gone to shul, but I panicked and didn’t go and went back to sleep instead.  I was worried that people would ask why I’m not normally there, which was a bit of a strange thing to worry about.  I think there must be something about shul that I really don’t like, because since my teens it has been hard to go even though I’m frum (religious) and I don’t think it’s just about sleeping in.  But on the other hand, I do find it easier to go in the evenings.  I think there might be a mixture of sensory overload, social anxiety, and issues with getting up early/depression.  I need to go a few times and become conscious of what is driving me away and work out how to either adapt so I can go or accept why I can’t go, but I don’t know how to actually get to shul a few times to make those observations.  In the past I’ve done it by making myself accountable to an occupational therapist saying, “I will get to shul by 10.00am every other Saturday in the coming month” but I don’t know who I can make myself accountable to now.  It doesn’t seem to work with my parents for some reason and I don’t think it would help doing it here, as I am too used to admitting failures here.

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An aside from that discussion with my parents: the big traumatic events of my childhood that have scarred me so much have largely been forgotten by my Mum and also (I know from another conversation) my sister.  My Dad remembers, but perhaps doesn’t place so much emphasis on them.  It’s strange.  It feels wrong of me to remember them as so difficult, but that is how I remember them, albeit partly because therapy has made them feel so formative.  On the other hand, my Mum said she remembers me running out of the room with my hands over my ears at my sister’s engagement party, which I don’t remember at all.  I remember that I was there for an hour or so and then I got overwhelmed and went to another room, but I don’t remember running out with my hands over my ears.  Strange.