I want to stop hiding my autism.
I had a friend who was partially sighted. At the time I knew her, she did not always want to be identified as visually impaired and often refused to carry a white cane. She bumped into a lot of lampposts.
I am just like her because I don’t disclose my autism, only the lampposts I bump into are metaphorical social lampposts. They give me less of a headache but still leave me in psychological pain. I try to do the right thing but it backfires. I upset people. I blunder around. I feel stressed, drained and miserable because I spend so much of my life trying to look normal.
Take what happened last weekend
My mother fell over and I had to take her to the hospital. Although I was feeling overloaded and out of energy after a difficult week at work, I managed to find reserves of energy in an emergency situation and I coped well.
The emergency department was hard though.
We had a long wait to see a doctor. The waiting room was busy and noisy with bright lights and humming vending machines. We were not given any indication of how long we were going to have to wait.
I don’t mind waiting when I have a clear indication of the time involved but with an indeterminate wait in a hostile environment, I became anxious and began to fret that we’d been forgotten.
I didn’t want to make my mum’s day any worse by having a meltdown but I was very stressed. I tried to hide it but it was obvious to her I was getting anxious and she sent me out a couple of times to give me a break. She felt guilty about ruining my day by falling over and I felt guilty because I wanted to be calm and support her but I was having trouble controlling my anxiety.
Eventually I went to check we were on the list. I didn’t express myself well and, I think, came across as an impatient person wanting my mother to be bumped up the queue. This probably didn’t go down well with the busy nurse. I heard other people in the waiting room whispering about me.
I was left feeling ashamed of myself and worried I had behaved badly or been rude (although this was not my intention).
Mum was OK, thank goodness, nothing broken, but the experience left me worn out and I had a bad meltdown a few days afterwards.
If I had been open about being autistic, would it have been any better?
I could have told the staff I’m autistic and it would help me support my mum to know the length of the wait and that we’re definitely in the queue. Maybe they could even have found us somewhere quieter to wait. It would not have been too much trouble for them and it could have made the difference for us.
I would have been calmer. I could have just settled down and read my book. I could have supported my mum and not given her the additional worry about me as well as the worry that she had broken her arm.
If I had a visible disability, it would have been obvious that I needed support. Because I don’t have a visible disability and because I default to hiding my invisible disability I don’t get the support I need. Support which would help me support my mum.
But in order to get my needs met, I need to communicate them. One of the key autistic traits is problems with social communication. At times of stress, when I need help, my communication skills are not up to the job of explaining my social communication disorder in a way that would give me the help I need.
It’s a catch 22 situation.
If people around me were more aware of my autism, somebody might know how to help me. Because I don’t explain about it, they don’t know. Even my mum who knows I am autistic didn’t realise my anxiety was autism-related. She knows I have trouble in that sort of situation and is supportive but doesn’t know why so she can’t communicate it for me.
I could get an autism card that I could show in times of problem. I haven’t bothered to get one because I haven’t got round to it and also because I feel I can cope.
I can cope. Until I can’t. Then I hit a lamppost.
I have a lot of fear around disclosure.
Will people treat me differently? Will they talk down to me? Will I appear weak?
And the big one: What if they don’t believe me?
My autism diagnosis is important to me. It has given me a sense of self after years of wandering in a wilderness of doubt and confusion and not having a clue about who I am.
It has changed my life. I don’t want to have to justify it to anyone.
That’s why, even though I spend a lot of time reading about autism and thinking about it, I don’t often talk about it in real life.
When I have disclosed to family and neurotypical friends, people haven’t understood. They’ve told me stories of their autistic relatives who are different from me. They’ve asked if there’s any treatment. They’ve talked about the bullshit diagnoses that psychiatrists come out with, in an attempt to comfort me. They’ve told me I don’t look autistic as if that is a compliment.
They don’t really understand how validating the diagnosis is to me. And I don’t have the words to explain it properly. I tried to write a blog post to show them to explain it and after about 15 drafts I gave up.
It feels less painful just to rely on my ability to pass as neurotypical. It’s what I’ve done all my life.
But I started this post by saying “I want to stop hiding my autism”.
And I do.
I don’t have to stop hiding my autism. My partially-sighted friend had the right to use her cane without being judged but she had an equal right to chose not to use her cane and not be judged for making that choice (this post is not intended to judge her in any way). The consequence was she walked into lampposts but she knew that would happen. I have the right not to disclose my autism but I know this means I’ll still walk into metaphorical lampposts.
I feel I want to disclose because I constantly feel that I’m one lamppost away from a massive mental breakdown at the moment. I’m stressed at work and the pressure of appearing neurotypical is putting a strain on me.
I need to stop hiding so I can support my mum. I need to stop hiding for my mental health. Passing, pretending to be someone I am not, is damaging. I hold it in, appear controlled and calm but inside I am full of turmoil.
It doesn’t mean I have to do a big coming out declaration The drama queen in me is drawn to that but the more sensible side in me wants to do it a little at a time.
I started by talking to Mum about it. She listened. I’m not sure she’d be in a position to help me in an anxiety situation but at least she knows why I get some anxiety in situations like the hospital.
I’ve downloaded the form to fill in for the autism card.
The next step is to talk to the wider family. I’m not sure how I’ll overcome their objections yet, but I will try.
One day I want to be completely out about my autism. Put my real name to my blog. It will be so freeing after spending my life feeling like I always have to hide parts of myself. I want to be honest. I want to tell people who I am.
I’m still not sure exactly how I will get there. I’m scared of doing it and there will be plenty of lampposts to walk into on the way, but it will be a huge relief.