Access to services doesn’t just mean that services need to exist, it means we need to be able to access them.
I’m not good at contacting people. That is an enormous under-exaggeration. I am terrible at contacting people. If it needs to be done by face or by phone, I may never do it at all, but even contact by email can be hard.
Then there’s asking for help. I fear being vulnerable. I fear being ridiculed. I rarely ask for help.
I’m a grown up. I don’t have an advocate to speak for me. People perhaps would if I asked them to, but how would I begin to ask? Who can I blame for that but me?
When I was first diagnosed I asked about services and was told there weren’t any. I asked about help and was told that whilst I would probably benefit from certain structures, there were none designed for me in my area. I wrote about a lack of services.
I feared being wrong. I worried that they were there and that I was making a fuss about nothing. I worried that I didn’t deserve them if they did exist. I didn’t want resources that were needed elsewhere for the most basic of support, to be put towards making my liveable life less of a struggle.
I have recently tried to contact more people. To ask what there is available and what more there could be. It was hard. It took from me. It took energy from other parts of my life.
When you find these things hard, you have to balance that energy somehow. What do you offer? The time you would put into cooking? Eating? Washing? Laughing? Writing? Cleaning? Driving? Socialising? Which? What do you sacrifice when your energy is not limitless? And what is the damage of each?
The results of my exchanges are positive. They’re all good. They’re all movements towards better things and potential new avenues of support.
But none of them are support. None of them are an end product, not yet. More contact is needed, more digging, more subjecting myself to those choices of what to lose in the hopes of gain.
Access to services doesn’t just mean that they need to exist. It means they need to be accessible. Accessible not by neurotypical standards, but by autistic ones.
People make assumptions about my abilities, about my limits, about how able I am to ask for and get to help. People make assumptions based on their own poor theory of mind. They see me mirrored in them and assume I am capable.
And they’re right, I am capable of many things, but not without the sacrifice. Do I choose not to listen to my children read tonight, because I cannot process it? Do I choose not to sit down to dinner with my family, because I cannot cope with the pain of the sound of cutlery on plates? Do I choose not to speak to my husband and hear about his day because speech is too hard tonight?
Or instead, could that choice be taken away? Could that information be there, in black and white. In lists of names and places and even pictures and breakdowns of what happens how? Could it not? Because if it isn’t, if it isn’t offered and available in a format that means I can access it when I need it, then can we ever say that autistic people have independent access to services?