Talking About Autism: Identity and Community

Recently I have become very aware of autism as an identity rather than a disorder. From speaking with autistic people and reading their blogs, taking note of the rejection of person-first terminology (“a person with autism”) and the preference for identity-first wording (“an autistic person”); the posts listing “that autistic feeling when…”; the visual stim boards showing different stims people do and stim toys people use to heighten sensory stimulus or satisfy sensory needs; the activism and campaigning; the encouragement and advice shared, I have become aware that as an autistic person my son has an identity outside of being my son, his father’s son, a grandson, a nephew, his family name, his city, his nationality or his gender. He is Autistic with a capital A. He belongs to a community. If he so wants, he can meet other autistic people, he can talk with them on social media, he can go to a specialist autistic school, he can take part in campaigns and activism. As an autistic person he shares a way of being, a way of perceiving the world with a whole group of people just like himself. He is part of a tribe, a community, a group of people with the same experiences and either he can be part of it or he can reject it but it is there for him, nevertheless. There is a population of people in this world to whom he belongs and I find that incredibly moving.

It’s not so much that I have denied his autism but we have very much lived life despite his autism, simply because it is a fact of life and you have to get on with life

I have always understood and accepted my son’s autism, I have loved him despite the challenges his behaviour and needs may have presented, and got on with life as it is, loving the boy in front of me and never wishing he were anything different than what he is. There was the inevitable brief mourning period after diagnosis where we as parents had to alter our expectations and accept that we were going to be walking a different path to all our friends and their children, that we were heading into the unknown without a map or a torch and that we were going to have to do this alone, without guidance and with little support. But after shaking off the shock and fear, it was life as usual. Thomas is gorgeous, hilarious, loving, kind, well meaning, earnest, sneaky, mischievous, all things that boys are. Whatever his quirks or needs, we rolled with it and moved on. We “felt” his autism deeply some times and other times it wasn’t a factor. As he got older and coped better, we felt the effects of his autism less and less. It’s always there, in the way he speaks, the way he stands, the way he acts but it’s just him; it’s Tom being Tom. His autistic-ness gets swallowed up in the everyday-ness of life. We work with it and round it. It’s no biggie. It is what it is, no judgement value attached. Shrug and get on with the day. It’s not so much that I have denied his autism but we have very much lived life despite his autism, simply because it is a fact of life and you have to get on with life.

I never realised how much he needed community or how integral to his sense of self him being autistic was

I have concentrated on celebrating him and his achievements, on raising him to be confident. Boy is he confident: he is in no doubt that he is awesome! But in so doing, I haven’t really stopped to think about it from Tom’s point of view. While we may no longer “feel” the effects of his autism, I know Tom “feels” his autism at times. For all his confidence and happiness at home and his solitary nature by choice, I know he feels lonely. I know he wants to be treated like every other child, like his friends. I know he hates his difference being pointed out. But until I read the blogs by autistic writers, until I told him that I thought I might be autistic, I never realised how much he needed community or how integral to his sense of self him being autistic was. Ever since I have mentioned I might be autistic, he has seemed really happy. He often laughs and says how great it is to be “an autistic son and an autistic mum”. He laughs when I point out how I stopped myself telling him off yet again for not putting his DVDs away yet again because I realised I hadn’t put the laundry away for exactly the same reason – because there was something else to do and I had forgotten. Three days in a row! Even though it’s right there in front of me, I’ve gone blind to the pile because I’ve seen it too often, just as he is blind to his pile of DVDs right in front of him because they’ve been there for days too. We laughed at how our brains get distracted so easily and how we find a big pile too much to handle and how we don’t think to put a small bit away each day because we’re busy having fun doing something else. And I suggested maybe we work together to create a list or a visual timetable to encourage each other to do our chores. He and I are a team, solving these issues together: we always have been and we might be even more so now.

I’ve spent so long helping him to fit into the allistic world, I’ve neglected his autistic world. I’ve attended to his autistic sensory needs but not to his autistic identity needs.

Seeing how happy he is now, it has really struck me that all the feelings I have carried for so very long, he shares. The sense of not belonging, not understanding, feeling apart even in a crowd of friends, the loneliness of never truly connecting with anyone, of being weird and quirky and funny but not always in a good way: all those feelings that have dogged me all my life, he feels them too. There is no-one like him and the few that are, they are either younger or older and have moved to other schools. We don’t socialise much because I have withdrawn from my social group due to depression and because we don’t have a car, and because he gets travel sick which makes long journeys a trial. As a result he hasn’t met other autistic boys, he hasn’t been able to relax in the company of people who “get” him, who are like him and see the world his way. Now I see how important this is and I realise that it’s time for him to start meeting other people like him. I’ve spent so long helping him to fit into the allistic world, I’ve neglected his autistic world. I’ve attended to his autistic sensory needs but not to his autistic identity needs. It’s time to start looking into what being autistic means to Tom and introducing him to his autistic peers. If that means he might be happier in a specialist autistic school, then that’s what I’ll consider. If it means putting myself through the effort of having to get us both ready and drag our reluctant selves out to an autism support group on the other side of town to socialise with other autistic people on a Saturday morning, then that’s what we’ll do. It’s time to let Thomas explore what being autistic means to him.

And if it turns out I am autistic too, then I’ll finally have a home too and that would be quite something.

Picture by geralt on Pixabay.com

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