June 16, 2021

Autistic and tired of fighting

By rosieweldon

People say that we ‘fight autism’, that autistic people and their families, ‘fight autism’. I don’t think that’s true. Being autistic in itself doesn’t feel like a fight.

But I do fight. Every day. All the time. I am exhausted from fighting.

So, what am I fighting, if not autism itself?

I’m fighting the system. I’m fighting to be treated fairly. I’m fighting for my seat at the table in a society that finds it easier to exclude me.

Most parents of autistic children will dread the words EHCP, most people in the autism community dread the PIP process. [EHCP is to get educational support and PIP a disability benefit] These are systems that are supposedly built to help and support our community. But instead, they make us beg and plead for any help, a constant burden to ‘prove’ our need.

I was diagnosed as autistic in 2017. I need someone to go with me to go anywhere. I need constant help. I hate it. I hate that I need help. I wish I didn’t. I haven’t claimed PIP until now because I knew the process would be horrendous, it is for all disabled people, but especially for autistic people. How can I prove my disability? How can I prove I need help cooking and leaving the house? Unless you want to fit the house with cameras, I can’t.

But being in a new relationship and realising I was leaning on her so bloody much for every day things I decided to apply for PIP. Surely the system couldn’t be that bad, could it? I guess I was naïve to think that. When I received my PIP assessment back last week it quite literally said that because I have a driving licence (I don’t drive and haven’t since I was 17 due to spatial awareness), and a degree, that I can cook and talk to people fine.

I read it and cried my eyes out. How could they do that? Do they even know what autism is? Having a degree doesn’t mean I can cook for myself every day. They span everything I said against me. If I want PIP I will now have to fight for it. Like many many other autistic people.

I am tired of fighting.

On Monday I turned up to get my vaccine at a Pharmacy2u site. I was nervous but my partner was of course with me, and I was ready and determined to go in, get the vaccine and get home to recover. She would communicate for me so I was just focusing on staying with her, preparing for someone to get close and then it would all be done.

Except it wasn’t. Because I was refused entry to the site on the basis of no mask. Offered a face shield instead. A face shield!? Looking back the notion is quite funny. Oh, so you can’t wear a mask because that causes sensory difficulties with it being on your face, how about this face shield that goes around your head and straight down in front of your face instead? No thanks. I would have lasted minutes (if that) before ripping it off from panic and sensory overload.  

After my partner pushing that it wasn’t right that I couldn’t get the vaccine, we were eventually offered for me to have it around the back. In some break room for staff. The area was not equipped and certainly not sanitary. I was given a seat outside on uneven concrete and gravel floor and my partner instructed to ‘catch me if I fall’.

I felt stupid. I felt humiliated. I was treated like less than because I can’t wear a mask. My partner and I were talked down to and zero compassion was shown as I became visibly distressed in a busy public high street. My dignity was gone. I was stripped down to a begging disabled person trying to get my vaccine, a vaccine everyone in the country has a right to.  

Now I have to decide whether to take further action against Pharmacy2u. I have complained and they have defended their actions. The problem with this decision? I am tired. I am so so tired of fighting.

Every single thing I need help with from a service (even those literally designed to help disabled people) I have to fight for. I needed adjustments to my exams, I had to fight for them. Letters, proof, phone calls, a whole jump through hoops process to just have a level playing field for my exams.

I am not tired of being autistic.

I am tired of fighting to be treated fairly.

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