When I got my formal diagnosis (see my diagnosis story) I could not wait to tell the members of the Autistic groups I was in on Facebook. I made a joke about leveling up because I got a ‘level one’ diagnosis. Some people received that well, there were even a few laughing reacts, but there were so many more people, pretty much a dog-piling, of people telling me that my language was unacceptable, and the way I was talking about my Autistic embodiment would not be accepted in the group.
The members and admin of this group not only had no sense of humour, they also didn’t think that the way I spoke about myself was for me to choose. They had no idea what experience, intersections or knowledge I came to my realisation with. When someone tells me they know there are Autistic, whether formally or self-realised, I always congratulate them and ask them how they are feeling about it all. I may even add some resources if I feel they may be appreciated or helpful. I had none of this courtesy extended to me within these groups. The overall feeling was that I was part of the group but that I was doing Autistic embodiment wrong.
Every day I hear about the explicit ableism and more subtle microaggressions Autistic people suffer from neuro-normative people and society. Autistic people are rightfully frustrated by this, but this attitude is allowed to reign supreme in some online Autistic spaces. All this infighting and inflexibility of supposed ‘rules’ doesn’t get us anywhere. Adherence to the way people must talk about themselves and their experiences shuts down conversations. Individuals most affected by this are those who may not be able to access the same resources many of us take for granted – Autistic People of Colour, unhoused Autistics, Autistic people with complex medical support needs.
Some people who connect with me online might use ‘Autistic spectrum disorder’ or even ‘ Aspergers’ I will gently educate people without judgement. I have no idea where they are coming from, what their knowledge or sensitivities are. There are issues with these words, believe me, I understand the power of words, but these people are reaching out for connection and if they are doing it in good faith then I won’t spit in their eye.
So many of us must watch what we say in real life, our very safety can depend on us getting communication ‘right’ according to neuro-normativity. These standards should not exist out there andthey certainly should not exist within Autistic spaces. Yes, there should be group created rules and consent must always be adhered to in every aspect of life, what I’m talking about is keeping people boxed into what is perceived as ‘appropriate.’
Tone policing and insistent word correction is white, English speaking and Euro-centric, and punishes anyone who does not neatly fit into, or show complete compliance to, these ideals. The Autistic community loves to use the disability rights movement saying of “nothing about us without us” but only when it suits. Only when people use mouth words, or are light skinned or highly educated. Ideas of being incorrect within your Autistic expression creates hierarchies. Autistic people do not fit into (or we actively reject) neuro-normative society, so why do these obtuse unwritten rules follow us into Autistic spaces? We can create spaces which take a neuro-anarchy approach, appreciating all Autistic and otherwise Neurodivergent people as equally valid and worth listening too.