The more I read about, hear about and meet other people on the autistic spectrum, the more I realise that I am never going to be fully part of that community.
Autism is a key part of who I am. Because of it, I have a fundamentally different way of thinking from most people. My brain makes different connections. This, plus my experiences of finding ways to navigate through the non-autistic world without knowing quite why I was different, has played a major part in shaping who I am as a person. But it doesn’t define me.
I have no desire to connect at a personal level with other people simply because we share a condition, although I’m happy to share strategies. I feel no real relief in finding ‘others like me’ (perhaps because I haven’t managed to find anyone whose condition manifests itself in quite the same way – I’m sure they must be out there; I’m not egotistical enough to believe I am unique). I do not want my condition to be used as an excuse, with no expectation that I can learn and grow. On the other hand, I don’t want to put on an act all the time in order to conform with the social norms of the neurotypical world where that really isn’t the right thing for me.
This appears to be a fundamentally different outlook to most of the people who ‘go public’ about their autism.
And it’s these people who get the attention – who have started to ‘define’ what being autistic is.
Their definition is not mine.
They do not speak for me.
So I’ve had to learn to speak for myself; to find my own voice.
It’s a hard balance to strike. One of the most difficult things about being diagnosed was almost instantly feeling that I had lost my autonomy and my right to privacy. People suddenly started telling me what to do and how to act. Assuming that either I have no social skills (actually, I’ve developed an excellent understanding of social engagement, even though this isn’t instinctive to me – and, in fact, sometimes I pick up more about the nuances of social situations than people without my condition) and that where there is conflict I am automatically to blame (again, not true). In order to defend myself, I’ve had to share things that – under normal conditions – I would not choose to disclose.
And in finding my voice, I’ve also needed to draw on mental reserves that I didn’t know existed. I’ve become more comfortable in my own skin; better attuned to my own needs and able to be assertive about what works for me and what doesn’t.
Although it feels like an ongoing battle at times. Not so much when people get to know me as an individual. But the assumptions that people make from what they’ve heard, or seen, or read in the news. The assumption that one person’s experience must be true – or at least reflective – of all people with high functioning autism. This is at least understandable (albeit unhelpful) when the person making the assumption is on the autism spectrum themselves. Something we all tend to share is a problem with putting ourselves in other people’s shoes; assuming what is true for us must also be true for others.
It’s still a false assumption.
I can’t speak for other autistic people any more than they can speak for me.
I only know how I feel; what I need in order to function. I can’t understand why other people need different things but I know, intellectually, that they do.
And some of the needs – many of the needs – I wouldn’t have if I wasn’t autistic. And that’s been difficult for me to accept. But some of my needs aren’t really to do with autism at all. They’re simply needs I have as a person; as Julie. Specific to me as an individual, in the same way as everyone else – whether autistic or not – has their own needs that should be considered.
Yet still the assumptions continue. Still people try and talk for me.
And if I have learnt one thing over the last year, it’s this: I don’t need or want someone else to talk for me. I don’t need or want someone to try and tell me, or others, what I need and how – as a person with autism – should feel and act. (Helpful suggestions are always welcome, but I am best placed to know what works for me.) I am perfectly capable of speaking for myself; in fact, I am my own best advocate.
I have found my voice. I’m no longer afraid to use it.
Time will tell whether that’s a good or bad thing. For now – world, watch out!