The other day I wrote about why I can’t seek formal diagnosis. I’m clear about that but it also makes me very sad. Not only because I have to live with the constant scrutiny and questioning of myself, but also because it makes me feel like I don’t belong in an autistic community. I participated in #autchat on Twitter once and felt very welcome and this feeling of not belonging isn’t because other autistic people are shutting me out. Quite the opposite, many autistic people recognize self-diagnosis as valid and my sense of not belonging is certainly not something I blame other autistic people for.
It has do with me. I write about myself as autistic in this blog and on Twitter but in my everyday life I’m not open about it. My partner and one of my friends know and when I talk to my child about autism I talk about it as me being autistic too, but otherwise I’m vague. I’m open about having ADHD and in some discussion groups online I’ve said that I think I’m autistic. However, I lack a sense of belonging in my everyday life because the adults around me aren’t autistic. I feel like I’m not entitled to claim an autistic identity and it hurts because I’m so obviously not neurotypical either and I need accomodations in many situations. I don’t really belong anywhere. I feel isolated.
Some days I feel more and more at piece with who I am. I’m fighting for my rights to accomodation, mostly for my sensory issues but in some other ares too. It makes me feel better about who I am, without a doubt. But still, this loneliness, this feeling of being unrelatable, of being a none-person. It’s extremely painful. It’s like a monster eating me from inside, telling me I’m worthless.
This is the price I pay for ableism. Being out of context. Not really knowing who I am.