Autistic-led

Being autistic is a huge part of who I am. The parts of it that show to other people are the communication differences (plus the fact that I get tired and bail out of social events) but really autism is much more. It’s how my whole brain is wired. I’ve been like this all my life and it’s shaped how I think and act, and how other people relate to me. It’s part of me and although I sometimes hate the trouble, stress and suffering it causes me and others, I rarely want to get rid of my autism. I’m not sure who I’d be without it.

Given how important a part of me autism is, it also matters to me that the language and story that society tells about autism should be shaped by autistic people. A problem that many disabilities have had particularly in the past is that other people speak for us. It’s great when people are allies, but it’s not great when others seek to be “parents” almost – to speak for us, to say what we ought to think, to interpret what we ought to want, and not to listen to us.

I don’t know how many of the charities that operate to support autistic people are led by autistics themselves – I suspect not very many. In a way that shouldn’t matter because if their mission is right, then it doesn’t really matter who carries it out. But in another way it feels a bit weird. Suppose a charity wanted to help people from a particular race, but was run entirely by people of another race. That would risk being patronising and deeply inappropriate, wouldn’t it? There’s something very important in having lived experience of the thing you seek to speak about.

I’m emphasising this about autism because moving to a situation where more of the discussion about autistic people is led by autistic people will also help break down the false perception that we autistics are helpless children who need to be looked after by neurotypicals. Sure some of us have high support needs – some autistic people may have a carer or some other form of help to live – but that doesn’t mean that they’re not adult human beings with opinions and desires.

All too often, in order to be heard, I have to “mask” some of the aspects of my autism. If I don’t, showing my autism might get me judged or criticised by neurotypical people, and it could make it less likely that what I was saying would be heard. At work a bit of masking can be a sensible professional response to a situation when trying to win the trust of someone who doesn’t know me; I’ll try to present myself in a way they’re likely to trust. But getting my opinion heard and my needs met shouldn’t depend on my ability to pretend to be someone other than who I am.

All the time the narrative about autism is led by neurotypical people, there is a danger that hiding autism will be valued – we autistics will be rewarded for how well we fit into the neurotypical world and avoid making neurotypical people uncomfortable. I happen to be comparatively good at doing that – but that doesn’t mean I should be rewarded, or someone who can’t do it should be ignored. It’s always going to be difficult to be autistic in society – we’re always going to be the minority and the ones who have to adapt and fit in or be judged. But there are ways in which we can reduce the amount that the autistic people have to adapt. Visible autistic leadership is part of redressing the balance away from there being autistics who can (and should) fit in and stop complaining, and those who need to be hidden away in residential care (the high/low functioning false model). We’re all autistic and some of us are leaders, and that’s OK.