I am aware of my autism. Sounds are grating, they twang through my ears like over-extended elastic bands, and I wait for them to snap and hit me.
I have things to plan, and I am putting off planning them so that I don’t miss out on what is actually happening now. I don’t want to spend my time in a continuous cycle of minute detail, data analysis, and variable controlling, instead of living.
People are aware of my autism, I have had two such examples of adjustments given to me in the past week. Both were thorough and thoughtful and considered, one was unsought.
Can you guess which weighed less heavily upon me? There is something about listing your deficits to strangers, that is unsurprisingly horrible.
I hate having to say that I find things hard, I hate having to point out what I need to make things easier. It takes me back to what we all have to do to get diagnoses.
I once heard Shona Davison give a great talk on the problems inherent in the Medical Model of Autism. No one else has to go to their GP and list all the negative aspects of their personality to learn how they work.
No one else has to rock up and say, “My logic is rubbish, problem-solving doesn’t come to me naturally, I’m not at all in tune with my senses, I focus on people to the exclusion of all else, and I’m not a natural pattern-finder!”
But that’s what autistic people have to do. They have to examine and remind themselves of all their difficulties, and lay them bare for everyone to pick over.
They have to relive all the times they got things wrong, all their social mistakes and the times they were othered. All the moments of hideous embarrassment and shame.
Only if you can prove your weaknesses can you be given a diagnosis. That’s how it can feel. In a world where you have spent a lifetime doing your best to mask and hide those things, and focus on your positives, that can be a traumatic experience.
It’s not healthy to focus on your weaknesses. It’s not good for your mental health to constantly be telling people the things that you can’t do. No one should be expected to go through life asking for adjustments.
When I received the unsolicited adjustments, it was like a weight was lifted from my shoulders. It was a detailed explanation of what would happen and when, it offered information about the order of events, how I would be met, how I could contact people, and it offered me more if I needed it. I had previously been sent pictures of rooms, now I also had names, times, plans.
The other group had provided the same. In fact I could even say that the other group gave even more tailored information – since I had asked for specific things – and they clearly put a lot of thought into providing it all.
But… I felt lesser for asking. I felt like a pain in the neck. I felt like I was causing people work and getting in the way. I felt vulnerable for revealing my weak points. The world is not always kind, and revealing my soft underbelly doesn’t make me feel secure.
There is a difference between accessible and welcome. Both examples showed excellent practice, one made me feel welcome.
Some would say that you don’t get what you don’t ask for, and that’s true, but there are ways to make things more accessible for autistic people, without them needing to ask.
Websites are useful resources, where possible I would love to see them used to provide photos of rooms, floorplans, photos of reception, photos of the building, photos of staff where appropriate, video walk-throughs. Then all you need to do is have a standard, “Check out our website for more information” when you contact people. No extra work for any individual at any one time.
I would love to see invitations include details of who will be present, where it will be held, a brief breakdown of timings. These are things that need to be decided anyway, why not share where practical to do so?
I have seen places do this admirably. I have seen interview packs that contain all the information I would ever want to know, sent out as standard to every interviewee. No neurodiverse applicant would need to ask for more, or reveal a diagnose they aren’t ready to divulge. No one has to go through their weaknesses, because everyone has already been treated to as much detail as they want. No one is made to feel unwelcome.
I don’t want to be treated like a special snowflake, I want everybody to be treated the same. I want us all to be welcomed in. I want spaces to be made accessible to everyone. I want equality.
With Autism Awareness Month looming on the horizon, I am aware of my autism. I am aware of who I am and all my strengths. Autism Awareness month can be a difficult month for autistic people. It can be a month of having your deficits scrutinised publicly. A month of being spoken about as though you’re not listening. It can be a month when many autistic people step away from social media for a while, to avoid being made to feel less than human by well-meaning, but unthinking, words.
Words are important.
Let’s be a little more aware this year, let’s be thoughtful about how we welcome people in. Let’s be truly accessible.