I am a 38 year old man. I have a day job in retail. I’m a photographer, a husband and a dad. I am also autistic. I was diagnosed as autistic just 6 months ago. The first doctor I saw said “you don’t strike me as autistic”. I was disheartened and gave up for a while. In the meantime my son (aged 8 at the time) got his diagnosis which spurred me on to try again. So I saw a different doctor who referred me straight away.
Since diagnosis, I’ve “come out”, if you like, as being autistic for the sole reason to try and educate people. During my learning process the thing that’s helped me most is hearing autistic people speak and sharing their experiences.
I’m fully aware that when I tell people that I am autistic they are most likely thinking ‘you don’t look autistic’, are really surprised or they think I’m lying!
I spend a lot of time self analysing since my diagnosis because I know it can really help my children navigate their own future.
I’d like to share one experience I have: Shopping.
Here’s what happens to me:
Firstly, I go early and never shop at weekends. I need to know exactly what I want and I must have a purpose to go. I don’t browse, and am in and out as quickly as possible. I avoid aisles with people in and I’m constantly aware of how many people are around. I am acutely aware, to the smallest detail, where people are looking, walking and heading.
I can get very irritated with people if they are walking slowly, get in my way, stop abruptly, or do things like step backwards without looking or swing their trolley around or stand there talking and blocking the shelves. I can’t understand why someone wouldn’t check before moving or be aware that they are blocking someone else who’s trying to get to the shelf. I guess I expect everyone to think like me and I’m always conscious of other people, probably too much.
The thing is, if someone is in the way of the shelf I can’t say excuse me. The words just don’t come out, it’s like a mental block. My stress levels build up and so does the confusion of not knowing what to do. My thought process is simple, I need to get to an item, but this person is in my way. So I just stand there, almost frozen. I wait and get increasingly irritated as they still seem oblivious to my presence. What’s also frustrating and adds to my feelings of stress is that I know what I should do. I should just say, “excuse me”. The person would most likely move and I could avoid all the stress; but knowing what to do and actually doing it are so far apart for me.
In terms of paying I’d use the self checkouts; or, more often now, the SmartShop.
Recently in an Asda near me they have many self checkouts which only take card payments. On one occasion I wanted to pay cash. This put me in an incredibly uncomfortable situation. I was forced to have interaction with people as card tills were becoming available. I had no choice but to turn round and direct people behind me to go in front and explain that I was paying cash. I can’t even describe how stressful it was. An event like that takes its toll on me. Typically, my head goes misty, feels full and heavy, and aches in a dull way. It’s a consequence of the built up stress and anxiety. I’ll feel this for a period of time afterwards. Sometimes just hours; but, at worst, days. This can have a knock on effect on the rest of my family while I process events, which means everyone takes a hit.
But of course on the outside I appear ‘normal’.
Everything I have described is all inside my head. Only my wife really sees that something is not right.
No one would else would have any idea of the number of processes going on in my head just to get through that situation.
‘Masking’ or ‘camouflaging’ is a huge part of my everyday life. It isn’t healthy, but I’m compelled to do it to appear “normal”. Since my diagnosis, I am very slowly beginning to lessen the camouflaging, at least around those closest to me. To an outsider, it might appear that I’m “more autistic” now than before (which of course isn’t possible!), but actually I’m just relaxing how much I mask.
I personally don’t think camouflaging is talked about openly enough. I believe it’s one of the biggest reasons there are so many adults having gone through life undiagnosed.
Now days I find it quite easy to spot autism in a person. Even the best ‘camouflager’ will find it hard to mask against someone who really understands autism. And that’s the real problem: lack of understanding.
I know that most people don’t understand, or maybe don’t even care to understand, about autism. If you’re not directly affected by something it’s natural to be oblivious to it, be it autism or something else.
So next time you meet someone who is autistic, if you find yourself thinking ‘but you don’t look autistic’ please stop and check yourself. Perhaps take the time to learn a little more about what is really going on for them. Because what you see on the outside is pretty much guaranteed not to be what’s going on on the inside.
Some final thoughts:
You may be surprised to hear that I actually work in a supermarket! I’ve changed my job role since my diagnosis and I rarely go on the shop floor now. Most of my hours are very early morning when the shop is closed. That suits me much better.
If I do go on the shop floor, I still find myself still doing all the things I described. I had some very dark days where I really struggled to cope. I always wonder how it may have been different with an earlier diagnoses and if I’d had more knowledge about autism sooner.
It’s also worth remembering that every autistic person is different. I have shared my experience and although there may be some common themes here for other autistic people, every person is unique and sees things differently.
I know that if I were to bring some of my process out into the world I may look odd and draw attention to myself. That in itself could bring its own problems, as people may then intervene or treat me differently which could cause me even more anxiety. There’s no easy solution, but I believe that more understanding of autism would help.