Am I more disabled than I thought I was?

On the 6th anniversary of my Autism Spectrum Disorder diagnosis I look back and wonder whether I'm doing OK now or do I need more help?

Pete Carr

Pete Carr

— 5 min read
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An overcast day at Barmouth Estuary. Hills lead off into the distance.

Am I more disabled than I thought?

In a few days, it will be the 6th anniversary of my Autism Spectrum Disorder (ASD) diagnosis. A diagnosis that has changed my life. It helped me let go of trauma, come to terms with food issues, accept that I need sensory tools and make adjustments in my life to better function in a world that isn’t for me. The diagnosis gave me an insight into a part of me that, for decades, I thought was broken and led to many regrets in my life. I could see those moments through a different lens and accepted that I was not broken, just different. The experience enabled me to happily grow into my 40s.

Since the diagnosis, I’ve seen myself less as the introverted geeky weird kid who could only talk about Star Trek and more as someone who could talk to people. I embraced my ADHD side as it helped me socialise when my autistic side wasn’t too overwhelmed. ADHD also helped me be curious about new experiences like cold water swimming, and that led me to gain confidence in who I was. I no longer compared myself to others in a competitive way. Instead, I realised that I could do things others couldn’t and that I should talk openly about those experiences. My labels became my strengths and I started living in a way that enabled me to be a better writer and photographer. That kid that did not know who they were or why they could not function in the world, that was no longer me.

Or was it?

Recently I’ve been seeing myself as that geeky Star Trek kid who only talks when a recognised keyword is mentioned. At events over the past few weeks, I’ve struggled to talk to people, and when I could talk it was more at someone instead of an actual conversation. keyword triggered initiate oversharing sleep mode activated There have been people I wanted to talk to but how do you talk to people, not at them? I just sit places playing with my phone until activated, even with people I have known for years. I can wear sparkly bikini bottoms to the beach, have my photo taken for a national newspaper, and struggle to talk to people all on the same day.

After 15 years of being a freelance photographer, it feels like I’m still struggling with every aspect of it. I’ve yet to find a way to do only the things that trigger excitable ADHD me so that I can be productive every day. When commissioned and placed into a space to work, my ADHD is curious and my autistic side is planning photos. It works but getting to those places is draining me and it feels harder and harder. A part of me wonders if I would function better by being employed by a company as an in-house photographer rather than freelance. I could do the thing I enjoy all the time without the business stuff I struggle with.

This may be overthinking leading to depression caused by a lack of work over the past 2 months. My joint issues and post-viral fatigue are holding me back from going out. Though when I do I’m battling the patriarchy because I wear shorts with the middle bit missing, aka a skirt and men freak the funk out. Everything is exhausting which leads back to what I wrote recently about autistic burnout.

Maybe the reason why I feel this way is that I forget I’m disabled enby in an ablest world. Am I more disabled than I thought or is the world getting to me? A few times this year I’ve been to places that have been liberating. Places where I fit in and function. But these are few and far between leaving me to wrestle with “normal” daily life. It isn’t that I want to continually be on holiday, more that I want to continually be myself and function. Again I wonder, do I have the energy to live the rest of my life?

All this leads me to a vision of myself as I was at 20. Overweight. Shy. Alone. Broken. Think of a cliched Star Trek geek stereotype and that was probably me. At 45 I’ve worked hard to change that vision of myself in my head and I’m not who I was in my 20s. Except, in recent times, that is how I feel. I’ve seen some autistic folk go around with carers/assistants. My internalised ableism tells me “Well at least you’re not that disabled”, but maybe I am?

Do I need to accept my limitations and start to find ways around them? I’ve heard that the UK’s ‘Access to Work’ scheme can pay for an assistant to help with day-to-day business tasks. That could be useful. Maybe I need to do a 4-day week instead of 5? Create a special interest day. Change is needed because right now I don’t feel like I can handle running my life. If I could only be easily paid to be super into things, engage with like-minded folk and not have to deal with 1000 paper cuts a day maybe I could get by.

I thought I was making coping, but perhaps not. Is it time to accept that I am more disabled than I first thought when I received the ASD diagnosis 6 years ago? Living with this condition is having a serious impact on my life. Maybe I need more help than the autistic powerpoint presentations on Instagram can provide?

A person walks along the water’s edge towards their friend. To the left is an old railway bridge / footpath bridge. Across the water are mountains shrouded in low level cloud.
A person walks along the water’s edge towards their friend. To the left is an old railway bridge / footpath bridge. Across the water are mountains shrouded in low level cloud.

Transporter room

People walk across an old wooden footpath / train bridge that stretches over Barmouth estuary. In the distance clouds cover the tops of mountains.
People walk across an old wooden footpath / train bridge that stretches over Barmouth estuary. In the distance clouds cover the tops of mountains.
Lots of little boats rest in low water as the tide goes out. It’s overcast.
Lots of little boats rest in low water as the tide goes out. It’s overcast.

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