Autism diagnosis – one year on

I set out writing this post with the intention to reflect on the last 14 months or so since my autism diagnosis; however I’ve found a lot more to reflect about than I had expected(!) so this is going to end up as a series of posts, each with a particular theme. (Or more likely, it will be one post and then get forgotten.) This particular post is about how my diagnosis has helped me to manage the social interactions in my life, and reframe some of the negative beliefs I held about myself as a person.

Since being diagnosed with autism just over a year ago, I’ve been fairly open about it, both in my online life and my ‘real’ one. I feel the need to talk about it in a way that I never have with sexuality, mental health, or other aspects of my personality. Autism has become part of my identity.  

Some people think that we autistics shouldn’t define ourselves by our neurology; they will either tell us we are so much more than just a ‘label’, or that the fact that we find comfort in being part of a community of like-minded others means that we are demeaning the struggles of ‘proper’ autistics, for whom it’s a disability, and nothing as frivolous as an identity.

For me, I started to write about being autistic because I hadn’t seen myself reflected in anything I’d read about autistic people. I studied autism during A level psychology, during my degree, my PGCE, and I researched it extensively when I realised my daughter was autistic – but still I didn’t see myself. For 38 years I believed I was a poorly-functioning neurotypical person.

I hid this side of me from almost everyone. I tried hard to be a good person and make people happy; some people saw and understood that, and some didn’t. I still don’t know why it is that different people see me so differently – some people tell me I’m amazing and an inspiration, and if I’m honest I don’t really understand that any more than I understand why some people say I’m manipulative and rude. Being diagnosed autistic has meant I’ve been able to gain a new perspective on this though, one I’ve never had before – it’s OK that I don’t understand. I always thought perhaps there was something intrinsically bad in me, that some people saw, and some didn’t, and that the reason they didn’t was because I was constantly trying really hard to NOT be like that. I don’t think I can find the words to describe how devastating it feels to be consciously trying so hard to be a good person and for someone to turn around all call you manipulative. I mean, do most people even think about whether they are a good person from one minute to the next? And here I was, really trying to be the best person I could be, and every so often spectacularly failing and having no idea what had happened or why. It’s the same sort of shock and bafflement I imagine you’d get if someone walked up to you, punched you in the face and blamed you, saying they’d only done it because you did it first.

This last year it’s been a huge comfort to me to know that my brain is wired differently from yours. I don’t understand, because I can’t understand. I can forgive myself, both for being different and for not understanding why.

Socialising is something I find really difficult. I have always been fascinated by people, always craved connection and interaction, but never found it an easy or natural thing to do. A couple of years ago I had a sudden realisation that I didn’t really have many ‘friends’; everyone who I socialised with regularly I saw within the context of some sort of work – either voluntary committees for various things, or musical activities like workshops or running community choirs. Don’t get me wrong, I liked these people and counted them as my friends, it was just a bit of a shock to realise I needed such a lot of social scaffolding around me in order to comfortably interact with others. Obviously, I interpreted this as yet more evidence of my dysfunctional human status, and it didn’t even cross my mind that I might be autistic. It was only when I confessed this to the psychologist who was doing my autism assessment that I realised it could be viewed in another way; that as an autistic person who really wanted company but found unstructured interactions difficult, I’d managed to engineer a way in which I could safely spend – and enjoy – time with other people. 

As part of my job now I teach four community choirs every week, and I love it. There is very little unstructured social time, just a small amount at the beginning and end of a session. Some of the choirs I know well enough to be comfortable with a few minutes of ‘chat’ at the beginning, and in the others it’s easy enough to avoid by filling up my water bottle, getting out my music, popping to the loo etc. Once rehearsal starts, any uncomfortable feelings are gone; I now have a clear objective in this situation, and I know exactly what my role is and what is expected of me. In addition, I’m almost entirely in control of the space and what happens within it. It’s hard to write that without feeling like it’s a negative thing to say, but I’ve come to realise it’s really important for helping me to feel safe. It means that if something happens within that space then I know how to deal with it, because I’m in control. It means I can insist on certain things, like people being nice to each other, because it’s my space and I can make the rules. I find it incredibly hard being in someone else’s space, particularly in a group situation; I feel anxious, self-conscious, and like I might unknowingly do something wrong or break a rule that I don’t know exists. This is also why I love being self-employed; working for other people is incredibly stressful as I invariably exhaust myself trying to be what I think they want me to be, only to realise I have completely misinterpreted the whole situation in the first place.

My identity as a neurodivergent person has allowed me to finally make peace with the fact that I don’t ‘fit’ in most normal work environments. I no longer feel guilty that I can’t hold down a ‘proper’ job, or that I can’t face doing the same thing day in day out for years on end. (And yet paradoxically, I’ll happily eat the same food for lunch every day for years on end…) I’ve also realised that I give too much of myself away, putting myself out and often working myself to the point of shutdown in order to please other people.

It’s all very well being all introspective, and spending hours analysing the way I feel about things, but it’s important to put this knowledge to use in real life too. An opportunity to do just that has popped up in my life only this week: my husband has a big birthday coming up very soon, and we’ve been able to have a really open conversation about what I might and might not be able to manage in terms of helping him celebrate it. Perhaps unsurprisingly, he wants to go to the pub. (Really, he wants to do a pub crawl but I’ve talked him out of that because – love him – twenty one again he definitely is not.) For me, pubs equal noise, crowding, and small talk, and I don’t see the point in them unless I’ve got a fiddle with me. Husband and I have talked about the fact that I definitely want to be there for the celebration, but that I might not manage more than an hour or so in a pub on a Saturday night. He’s fine with this, but I think I’d feel really awkward walking out in front of all of our friends, so I can imagine I’d either force myself to stay the distance and need three days in bed to recover, or I’ll get really anxious beforehand and not be able to go at all – and I really don’t want to make his birthday all about me having a meltdown. However, if I take my fiddle (and encourage other friends to bring instruments) then I’ll manage much better, probably manage OK for most, if not all of the evening, and need minimal recovery time. It’s really liberating being able to talk about all of this upfront, and find solutions that work for everyone, but it can only happen with open – and open-minded – dialogue.