my experience of autism 2 - turmoil

Anger
So now I have a diagnosis everything's falling into place isn't it? Nope. Life is never clear, and this is pretty big, pretty fundamental. Sure, I've known something was up since at least 16. And for close to 20 years I've suspected that something might be autism. But that's exactly the point.

30 years suspecting something's up. 20 years with a potential cause. Around 37 years struggling socially. That's a lot of history, a lot of pain, and a lot of thought, discussion and sporadic attempts to get help and answers. You don't just roll that up neatly and put it away in a fortnight.

'We don't want to put a label on it.' That's what a clinical psychologist told me in 2005/6. I'd been referred by my GP for assessment. I had symptoms of stress, anxiety, and potentially mild depression. Throughout the appointment I kept emphasising that I had few friends, few social outlets, and that I struggled in social situations. This was the deeper, underlying concern that needed addressing. Maybe it was autism? It seemed to fit.

But no. 'We don't want to put a label on it.' It's stress and anxiety. Here's 12 weeks of cognitive behavioural therapy (CBT).

When I got my autism diagnosis I was told, and expected, it would be emotional. One of those emotions might well be anger. To me, though, it seemed unlikely. I was simultaneously upset, happy and relieved. But angry? As I said, 'It's a little late to get angry.'

But a couple of weeks on I still have a difficult churn of emotions. And one of those is anger. I'm angry I was fobbed off with, 'We don't want to put a label on it.' I'm angry I didn't fight it and push harder for an assessment for diagnosis.

As a result it was another 10 years before I was diagnosed.

But I'm still human, still flawed, still struggling. Not all my emotions are rational or focussed productively in the right direction. And so it is with my anger.

Last year I left Facebook, in part because I found I was getting annoyed at some friends' posts. Not because they were generally saying anything particularly offensive or stupid. More because some things they'd posted in the past had annoyed me. That might be because of a high-handed virtue-signalling tone, because muddled and asinine thoughts were being offered as meaningful insights, because they were constantly babbling on about how WONDERFUL AND EXCITING!!! their life was, or because I'd said exactly the same thing more clearly some time earlier to widespread indifference while a later and less articulate reiteration was showered with likes and comments. As a result I started to find that in some cases almost every post by those friends became irritating.

I don't want to be annoyed at friends, so it seemed healthier to withdraw. I wouldn't have the same unfounded anger towards people I like, and it would be less hurtful to me.

Looking at Facebook had become almost a form of self-harm. Not just the anger, but also the unhelpful comparisons. Everyone seemed to be happier and more successful than me, they had more opportunities, they travelled more, they got out more, they had more friends, they were rewarded with more likes and comments, and so on. There seemed to be no positives to the platform anymore, so I left.

Let me emphasise, this was largely irrational, unreasonable, unfounded, and nobody's fault but mine.

I returned earlier this year. The main reason being to find out about gigs and other events I'd been missing out on. No-one much was inviting me to anything outside of Facebook, so I just didn't know what was going on. Aside from work, maybe a gig every month or so, going for walks and doing my big grocery shop I was in danger of becoming a shut-in. Back to Facebook then.

And while it's been helpful, and I have been out a little more, the same problems have crept back. I've muted a few people, I limit my time there, but still the comparisons can't help but arise.

Like any other social space Facebook feels like somewhere I don't fit, where I'm excluded and marginalised because I simply don't have as many intimate friends, and because I don't see, don't understand, and can't follow the social codes and rules. Like gigs, like parties at friends' houses, like clubs and pubs I become invisible, easily ignored because I don't have the right tools to fit in. Being on the margins of any social space has a way of amplifying loneliness.

Anger almost certainly isn't the right response. On the other hand when you see a pattern repeating itself, when you know the cause, but you don't know how to address it, you become frustrated.


Upset, happy and relieved
Obviously that isn't the whole picture. Anger's really only a very small part. But it is important, and I wanted to demonstrate how confused and sometimes misplaced my emotions can be. There's a lot more going on, though.

I mentioned that when I received the diagnosis I felt upset. It's hard to pin down exactly why. Perhaps it's a sense of loss - a loss of time and opportunities for help I was never able to get, or progress I was never able to make until I had the diagnosis. That, of course, comes with its positive counterpart. With diagnosis comes clarity and the chance to get support.

But back to the question in hand, also factoring into my upset are two unrelated events. The first is the death of Muhammad Ali, the second is my mother's death around 15 months ago.

Now I didn't know Muhammad Ali, I don't feel any links to him, and I'm not a fan of boxing. However, my father was very interested in the 1960s civil rights movement - partly, I think, informed by his love of folk and blues music, and the progressive politics practiced  by many of the artists. I'm certain his religious vocation and sense of justice also played a role. Consequently Muhammad Ali was a very familiar figure through my childhood.

Unusually for a white kid growing up away from major metropolitan centres in the 1970s I had a lot of black role-models. I knew the music of Big Bill Broonzy, Sonny Terry, and above all Leadbelly. I was aware of Jesse Owens and his defiance in the face of the Nazis. Most importantly my father would tell stories of, and recite quotations from Paul Robeson, Dr Martin Luther King, and Muhammad Ali. These were all strong people who believed in something, and were willing to stand up for it.

As an aside, although I'm an atheist and my father was an Anglican vicar, Ali's Islamic faith was never a problem. Remember, this is the 1970s. Quite apart from my father's intelligent, questioning, undogmatic faith and openness to others, Islam didn't have the same cultural associations it does now. Many artists and others, both people of colour and white, converted to Islam during the late 1960s and through the '70s. Especially to Sufism.

Anyway, with that essential background you may be able to see why Ali's death upset me. A major part of my childhood, and a link to my father was lost; it was almost like another bereavement; almost being orphaned all over again.

That upset, and the other emotions beginning to be stirred by the diagnosis, opened up a gap to allow me to feel the pain of my mother's death again. I'd largely dealt with it by throwing myself into long projects like my walk (and this year my run) around the M60. And by watching rubbish on YouTube. For most of that time my emotions had been pretty subdued.

The re-engagement with this grief can only be a healthy thing in the long run.

Again, there was also happiness and relief at the autism diagnosis.

There’s less to say about these. It’s pretty self-evident why I’d be happy and relieved to have at least one point of clarity after such a long time. Also, honestly, I’ve run out of things to say this time. I’ll try to write about the actual process of getting diagnosed in another part at a later date. And I’ll try to keep it interesting.

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