Accessible Autism

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?

11 thoughts on “Accessible Autism

  1. This is so true! Thank you for writing about it.

    On an even more basic/personal level, I’m still struggling with knowing when to even ask for accommodations. How do I actually know when it’s difficult enough for me to need them? I have no idea. I’m so used to struggling through it all that I often can’t determine what would help in the first place, let alone how/when it would be appropriate to ask for help.

    The very thought of then, whenever I do figure those things out, having to contact someone to ask for those accommodations – the ones I’m still not even sure I deserve or need *need* NEED – is daunting, while I continue to flounder in other areas of my life.

    On another note, I probably shouldn’t read your blog out in public again because I’m about to cry just thinking about it all, along with the feeling of being understood, and of course happened to not be home right now!

    Liked by 4 people

    1. I’m sorry I’ve made you cry!

      It’s hard, isn’t it? All your life you make do and assume everyone finds things just as hard, then it all changes and you realise it’s all real. All those difficult bits are difficult.

      If you think something would make your life easier then why not ask? I know things like wearing noise cancelling headphones when needed or not facing bright lights can really help me.

      But there’s that problem of asking again. Some places get it so very right. If you tell them you’re autistic they will tell you the things they can do if you want them. Amazing.

      If they’re really good they won’t even ask an open question! They’ll make sure the options are listed choices!

      When struggling to ask for help is part of the problem, inclusion and adjustments need to be visible and offered.

      It is need. Need, and not want. If you’re using energy to cope at a time when an adjustment could help, then that’s when it will make the most difference. Keep that energy for dancing around the house later on 😊

      Liked by 5 people

      1. It wasn’t a bad wanting to cry – more of a feeling understood wanting to cry. Just bad that I was in public when the feeling came!

        You make very good points. I need to think of them as needs even though I’ve (more or less…) pushed through many of these things in the past.

        I think the asking will get easier with practice too. The first time is probably going to be the hardest, especially since I’ve built it all up in my head as a big thing.

        I do enjoy dancing around the house! Singing and playing the piano too 🙂

        Like

  2. “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. ”

    I relate all too well. It's hard.
    I know, personally, I feel like a bit of a failure because I just can't do everything in the same way others do, and I appear lazy. I know that's not the case.
    Things are just hard, and because we are such a small part of the population, the rest of the work has very little reason or desire to even look into providing the help or services in a way that's beneficial to adults on the spectrum.
    We're expected to just cope. And we do. At a price.
    *virtual hugs*
    I can do little to help except let you know you're not alone.

    Liked by 3 people

  3. I have similar issues at times. I found Google is an amazing resource if you can only tolerate print that day. And kill 2 birds with one stone: ask your kids to type the search (with help spelling) and have them read the top three results to you. If you don’t want to enlist your children, you can just do the quick search-after they’ve read to you.

    Like

  4. So true. I have hyperacusis and can’t use phones. I know there are relay services for those of us who can’t use phones. But they require registration. And registration requires using phones. So in the name of reserving them for people who can’t use phones, they’ve barred them to those of us who can’t use phones. And because of the reliance on phones, and the inaccessibility of relay services, I can’t schedule specialist doctors’ appointments, can’t contact poison control, can’t contact government services about their accessibility barriers, etc.

    Liked by 1 person

    1. All these gatekeepers actually ends up creating a system where those with the most support can access most, and those with the least will be blocked from things they might need. I’m so sorry to hear you’re left in that position. It’s very wrong.

      Like

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