October 8, 2021

Invisible disability of autism

By rosieweldon

The pandemic has put a spotlight on invisible disabilities, as some of us are unable to wear masks yet look physically okay. This has got me thinking a lot about my disability and what it looks like to the outside world.

I know that I can stand in a room and ‘pass’ as abled. But the question is, do I want to? I wore the sunflower lanyard when masks were mandatory, and it gave me a sense of freedom. While some argued that we shouldn’t need to identify ourselves as disabled, I quietly liked it. I liked being able to walk into a busy shop and it be obvious I struggled with things. This is, of course, predominantly down to living in a country that has an expectation on businesses and employees to be accessible to everyone, including those with invisible disabilities.

I have spent my life being judged for being rude and ignorant. For the first time I felt like I could be myself and any decent person would make allowances for that based on my lanyard showing I had a disability. I have always been keen to disclose my disability because my theory is that most people are kind, and they want to understand and help. Anyone that doesn’t, really isn’t worth my worry.  

But masks aren’t mandatory anymore.  That protective shield I felt wearing a lanyard has slipped away. I’m back to looking ‘normal’ but being unable to do many things, especially outside of the home. While I could still choose to wear a lanyard, this is something I didn’t want to do prior to the pandemic and still don’t want to do.

Last week my partner and I made the most of me having a Thursday off and went to Pizza Hut. My partner is incredible and while the world scares me, I know she will communicate for me and be right with me. She doesn’t hesitate to go with me to the toilet or jump in if someone tries talking to me. But the downside was, it was a buffet.

We both got our plates and walked to get food from the central area. Others were around us and would also be getting food from the same place. Something in me got stuck. I started to quickly get overwhelmed as I stood, plate in hand, unable to do continue the task. My partner realised what was happening and took me to sit down. She asked me what I wanted, but I was unable to talk. She reeled off foods she knew I liked, and I nodded. I knew what I wanted, but I was unable to communicate to her what it was.

I looked ‘normal’. I was stood with my partner in the middle of pizza hut. But I was stuck. An experience most people will never have. To feel trapped between your current state and where you want to be, unable to continue because of a mental block.

A few days later we were in a shop and a child I was with bumped into a lady. She got annoyed and turned to me, clearly expecting an apology. But I could not talk. I didn’t know her. The situation happened so quickly. I could not talk. She got annoyed and turned away from me. I quickly caught up with my partner and struggled to hold back overload from the frustration of the situation.

I look ‘normal’. But I am not. Not really. There are many things I can’t do when I’m out in the world. But you wouldn’t know that from looking at me.

A lot of us may have stopped wearing the lanyards, but the disability is still there. Invisible, but very much still there.

Please stop to think if someone’s behaviour seems odd. Please stop to think that they may be autistic and struggling in that situation.

Have patience and kindness with us, it really does change our lives.

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