Just before the psychologist told me whether or not the multi-disciplinary team had concluded I was #autistic, she asked me what I thought about getting an #autism diagnosis.
#AllAutistics
#ActuallyAutistic
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While I was being assessed I had done a huge amount of #research on #autism, I’d also joined an online forum and had conversations with many autistic people, and I’d reviewed the whole of my life from an autistic perspective.
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Being autistic was a much better explanation for exceptional aspects of my life than anything else I’d ever found. Not just difficulties, challenges and disasters but abilities, achievements and triumphs.
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When I responded to the psychologist I said the most important thing was being part of a group of people I had things in common with. I’d been accepted and supported by autistic people during my autism assessment, but I felt I needed formal validation to belong. I was wrong.
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It’s nearly two years since my autism diagnosis. If I hadn’t been diagnosed I’d still be autistic. It would have been distressing and confusing but most autistic people would still have welcomed me. After all we recognise each other far more easily than many ‘experts’ do.
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If you think there’s a possibility you might be #ActuallyAutistic, if you’re sure you’re autistic but can’t get assessed; if you’ve been told you’re not autistic but still feel you are; whatever your situation you’re welcome from my point of view.
#AllAutistics
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Being recognised as autistic doesn’t happen on a level playing field. So much depends on how well you fit the stereotypes. It’s a postcode lottery, a game of chance, touch and go, dependent on financial means and social capital, flawed, imperfect and unfair.
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A formal autism diagnosis is largely unnecessary. Self diagnosis is just as valid in most situations. The benefits that follow are extremely limited. There are theoretical rights and privileges but very few of these have any practical impact.
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It could be argued that getting formally diagnosed may even be risky. Shortly after my #autism #assessment a row blew up over proposals to apply additional checks to autistic people who wanted to drive. This was overturned, but it highlighted potentially negative effects.
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Something else to take into account is the impact of deficit based autism assessment processes. Reading reports highlighting our difficulties rather than our strengths is bound to have a negative effect. Afterwards we have to repair our confidence and our sense of identity.
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I’m still glad I went through the autism assessment process. On balance the insights were worth the pain. I feel fortunate that I can be #OpenlyAutistic in my personal life, in the community where I live, and at work. This isn’t possible or safe for everyone. Stigma persists.
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Some people don’t recognise me as properly autistic because of autism stereotypes. And some people think talking about my experiences diminishes struggles other people face. But autism isn’t a zero sum equation, even though competing for resources can make it feel that way.
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The autistic community isn’t a single coherent entity. It’s a swirling, overlapping, shifting mass of constantly changing elements which jar as well as gel. It’s not perfect, but it’s so much better than anywhere else I’ve found. It’s the only place I really feel I belong.
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I hope we’ll continue to be inclusive, welcoming, tolerant and kind to everyone who identifies as being autistic. We all have different histories, experiences and challenges. As long as we’re not being deliberately offensive or hurtful seeing things differently isn’t wrong.
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There are huge inequalities and human rights abuses to address. It’s hard when we’re struggling ourselves but we need to make sure no one is left behind. I’m thinking of autistic people in prisons, ATUs and mental health settings and others who face additional discrimination.
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Being autistic and white can be hard. Being autistic and black, gay, trans, or from a Gypsy, Roma or Traveller background is usually much harder. And although traditional concepts of class are outdated, poverty and lack of social capital have a massive impact on outcomes too.
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So many things need to change. It’s easy to feel overwhelmed, but everything we do makes a difference. It’s important to recognise no one else will do this for us. Autism charities have existed for decades without ever really challenging the status quo. We must drive change.
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We can’t change things unless we challenge them, and we can’t challenge them unless we know what’s going on. That’s why it’s important to be aware of other people’s experiences. Self care comes first of course. Autistic activism takes energy. We can’t help if we burn out.
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If you’d like to connect with other people interested in promoting #autism related social justice please reply or quote tweet. There are many ways of doing this, whether or not you’re #autistic. Allies are hugely important too.
#AllAutistics
#AskingAutistics
#ActuallyAutistic
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So much else is going on (COVID, Brexit) but we mustn’t let this distract us. If nothing changes inequalities will keep on getting worse. Now is the time to make things happen. Now is the time to push for change.
#autism
#autistic
#AllAutistics
#HumanRights
#ActuallyAutistic
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