This is my last post as part of this project, I can’t believe it’s come round so fast! It’s also the post I’ve known I was going to finish with right from the start, and I think the most important of the lot. Awareness is one thing, and as I said in the first post, there’s nothing wrong with it whatsoever. However, stopping at awareness isn’t enough; you have to do something with that awareness for it to really mean much, otherwise it’s just another bit of knowledge you don’t use. For autism, I think one of the best and easiest next steps is acceptance, using whatever understanding you’ve gained to feel more comfortable with the idea of autism and not being afraid of getting it wrong.
There are those out there who actually refer to this week/month as Autism Acceptance Week/Month, which really speaks to the thing that we need. Unlike lots of awareness-raising things, it’s not that you necessarily need to be on the look out for symptoms, or getting tested automatically like for some cancers and things like that. It’s not that a simple blood test will allow you to be diagnosed faster, like with some cancers, or that it’s a dangerous thing to have or be around like infectious diseases.
Acceptance is about treading that fine line between treating people equally and accepting that you do need to treat people differently when there’s something going on. No, I’m not saying it’s easy or simple, and I certainly won’t claim perfection on my part. However, if someone tells you they have sensory issues to do with their autism, the acceptance bit is listening to them as to what might help, whether it’s something as small as choosing a different café because the light levels screw up their head less, or making alterations in a workspace to take account of the effects that sensory overload can have. I had a friend whose job included doing accessibility reports for places, and it’s encouraging that part of those reports did include discouraging harsh lights on the basis of sensory issues, which aren’t just restricted to autistic people. The world is getting there on realising how it can make things easier on a grand scale, albeit slowly.
The real acceptance, though, is from people. Individuals are the ones who can make the most difference to making life a bit easier. I’m so used to coping with the sensory stuff when out and about, it’s nice to be somewhere where it’s been considered, but it’s not essential. However, I’ve so far failed to get used to the way friendships seem to fizzle out around me because people don’t talk straight or don’t like it when I do. I still struggle to cope with the social anxiety when sensory stuff and having to talk to people when in combination, and the temptation is to just turn down social engagements full stop. I realise when I go back to University in September I’m going to have to bite the bullet, or end up being that reclusive classmate who never goes to stuff, and that’s my choice. However, what makes it a whole lot easier is not having to swallow or hide my anxiety and sensory overload in front of people. I am learning to “allow myself to be autistic” in public, whether that means I have to flap my hands when I’m stressed out (yes, “high-functioning” people stim too sometimes), get out and go somewhere else fast, or just have a hug and someone telling me it’s OK, that I’m doing alright, and no one’s judging me.
Naturally, my Mum is a pro at this, but she’s had a lot of practice, and it’s actually fairly straightforward, in a lot of ways. It involves listening to autistic people when they say what we need. Yeah, it’s that simple. We are gifted, very often, with the ability to talk very literally, and in a very straightforward, sometimes blunt, manner. If I say “I need to get out of here right now”, that’s honestly what I mean. If I say “the lights are really bright in here, but I’ll be alright for a bit”, it’s not a moment to panic, it’s a forewarning of the fact that my tolerance for that place isn’t limitless. If I say “my anxiety’s kicking up, I need to be outside for a moment”, that’s exactly what’s happening. If I say “please don’t touch me”, or “I can’t deal with this right now”, or “this is too much, please stop talking to me”, I’m not being rude, I’m telling you that I need space. It might seem unusual, and I might look rude while I’m saying it, but if I’m on the edge of meltdown or shutdown, it’s already taking everything I have to stay with it, and I honestly don’t have anything to spare.
Acceptance is not saying “I know about your autism, and I know better than you what needs to happen in this situation”. My Doctor might get to say that, a specialist psychologist might get to say it, and my psychiatric nurse definitely gets to say it, but no one else, not even my Mum. That might seem obvious, but I’ve had it said to me. In a complicated situation involving multiple disagreements, anonymous complaints, and a complete lack of understanding, I was told “the thing you will have to learn with your autism is…”. That would have been all very well if I didn’t already know the thing I was told I had to learn, and if the person hadn’t decided to condescplain (like mansplaining, but without the gender bit) to me about how my autism would work. It was hurtful, and made the autism (and therefore me) a scapegoat for all the problems that were happening at the time, removing my agency in the situation. Bearing in mind, also, that this was one of my peers, it’s doubly insulting that they chose to act high and mighty about autism without accepting their own culpability in the matter. I was not perfect, and nor would I have claimed to be then, or in fact, ever, but the attitude of overriding what I was saying about my needs is the very worst thing you can do with awareness of autism, I reckon.
Asking everyone else to be accepting of autism is one thing, but actually, the biggest thing I’ve had to do is accept autism in myself. I thought I was OK with it for a long time, particularly in the early months after the diagnosis. I was very (too?) open about it with literally everyone, and I probably became a bit of a bore on the subject (she says having churned out over 11,000 words on the subject in a week, and with no hint of irony). It took me years to realise that I was actually compensating for my own fears and the hurt that being undiagnosed had caused me. I railed against the man who said he didn’t want “children like that” (he was my fiancé at the time) and proudly declared how much I would love any autistic child I had.
Then, some months ago, it crashed in. I hated autism in myself. I hated it, and I hated myself for being autistic. I realised that I had been over-compensating for my autism in conversation, covering myself so that people wouldn’t find out my biggest secret, that I hated the thing that meant my brain was built that way. I realised that I didn’t want autistic children, not because of them being autistic, but because I couldn’t have had a child with a condition I hated so much in myself and not ended up projecting that towards them in some way, and that would be an intolerable thing to do to a child.
That was a long while ago, now, and I’ve been working on how to accept my autism as the defining factor it is on my brain and my life. I’m learning that it wasn’t my fault that nearly all my friendships over my life haven’t lasted, and were often a complete sham at the time too. It wasn’t my fault that I didn’t fit in, and there wasn’t much I could have done. I’m getting there, accepting who I am, finding people who I can trust enough to let them see my true self, and I’m being pleasantly surprised all the time at just how brilliant people can be over this sort of thing. I’m about to move somewhere new, and for the first time, I’m confident that I can be myself from the off, rather than hiding behind the confident front that I’m far too good at putting up. I’ve met some of the people I’ll be hanging out with already (hurrah for the folk world!), and found myself instantly accepted and, I daresay, even liked. I am more in touch with my proper self than at any other point in my life, and I have learnt that actually, autism might just be one of the best things about my brain. It gives me logic, intelligence, the obsessive tendency to pursue a single subject for a long time (which, as an academic, is often no bad thing), the ability to process facts fast, and the years of practice at reading people and situations that makes me insightful and sensitive.
Part of the reason I hated autism so much in myself was because of the rhetoric of organisations like Autism Speaks, telling the world that autism is a tragedy that needs to be cured and eradicated. It’s taken me a long time to stand up and say “actually, sod off, I don’t want a cure for being myself”, and to embrace the fact that my brain works this way rather than fighting it and trying to be normal. I had forgotten a vital thing that someone said to me during my diagnostic process. “You can be normal. You can fit in. But you will have to cut off bits of your brain to do it, restricting your natural tendencies, and it will involve sacrifices. It’s your choice, but you have to decide whether it’s worth it. You can’t be both.”
For a long time, I thought it would be worth it to fit in. I would put the effort in in public, often collapsing when I got home, in total sensory overload and unable to function. Then I realised that, actually, it’s alright to be me, and it takes far less effort than trying to be a neurotypical version of myself. I am sure that those who’ve known me over this process will have seen the change even if they didn’t register it, but I feel myself growing more confident in my autistic self all the time. I would never have dared do these blog posts this time last year, that much is for damned sure, and it still does feel a bit scary baring this much about autism and me in one go. However, I’m glad I’ve done it now. I like speaking up about autism, and the feedback I’ve had has been unanimously good and encouraging, which is even better.
It is easier to be myself in a world that doesn’t treat my self like an oddity. I am very much like other humans in a lot of ways, and in my case, I like to think my differences aren’t huge, though they are much more pronounced for some, including those who are more profoundly disabled by their autism. I want to be loved, accepted, heard, understood, listened to, and to feel safe in the world. As I said in the first post, it might just take a different approach.
That’s the end of my Autism Awareness Week 2016 series. Thank you so much to everyone who’s followed along and read these, or caught up later on. This is just a tiny part of the experience of autistic people at large, but it’s all my experience, and I understand from some of the comments that there’s plenty in there that people didn’t know previously, which makes my inner teacher go all warm and fuzzy. Yeah, I’m raising awareness, but we’re at the point where we know enough, mostly, to move on to the next bit, which is acceptance. That’s the bit we need to carry out of this week and into life in general.
Thanks for reading, and I’ll be back soon with, mercifully, something other than autism for a while!