Blogs

One Size Doesn’t Fit All: a blog about Autism from Ross Punton, Autism Staff Network Chair

Hello, I hope you are all well.

The 27th March to April 2nd is Autism Acceptance Week.

This year’s theme is colour and aims to celebrate the uniqueness and individuality of being Autistic and diverse, because we are all individuals.

Many people like to have a 'one size fits all' for neurodiversity and Autism, but that simply doesn’t work. You can’t just use the same approach for everyone. People will not react the same way. People need to understand that this is important.

Autism is not always visible or obvious. Obviously, those with more acute needs may be visible and they may need more support. That is the image most populated by the media. There is a term for it, ‘Hollywood Autism’, and it represents a very low percent of Autistic community.

One of the most infuriating things people say is “you don’t look autistic.” Autism is a hidden disability. There is no autistic look. People need to understand that.

If you are reasonably high functioning Autistic person it can be a hard transition learning the rules of social etiquette as you get older. It’s difficult to process in your head. You know what you think and mean by what you say and do. But others expect you to know what THEY mean and you don’t always get sympathy if you don’t react the way most people do or know what they mean.

It’s like everyone in the world has been given a copy of a rule book “Do and Do Not’s.” You somehow missed your copy and are just expected to know these things. Things other people don’t even pick up on. It’s harder when people get annoyed. It makes you feel that maybe they’re right. That you should ‘just get it.’ But that is simply not true.

I’d like to share a few stories with you know of times I was misunderstood because of my Autism not being visible to demonstrate my point.

1: Get off my dinner: When I was a child I was in a cafe with my dad for tea after a day of shopping. I was tired and wasn’t standing straight; leaning over the railing. A sharp voice said to me “get your arm out of my dinner.”  I started to realise I was quite close to the tray of a lady next to me, so I said sorry. Now what happened next happened because I had not realised that people aren’t always nice. I said I hadn’t seen her and waited for her to acknowledge my apology… She didn’t.

I then said that technically my arm “wasn’t in her dinner but merely close to it” she said I was being cheeky and I pointed out a lack of food on my arm. I was taking her saying ‘my arm was in it’ very literally. She got very annoyed and dad noticed all of this and steered me away. However I was upset to be thought of as naughty so slipped away.

I then tried again to apologise. I said that at school I was told that if you gave a sincere apology it should be accepted. She then said I wasn’t sincere and so it wasn’t accepted. This unfairness was too much emotion for me. Luckily dad came to my rescue. This stuck with me.

Most people I’d met up to then were patient with me and nice. I genuinely thought if I explained myself my apology would be accepted. I now know you can never expect everyone to understand you which is why you have to be grateful to those that do.

2: You can’t sit there: Once I was on the metro going to my dad’s for the weekend. This is when I was 19 or 20; legally an adult but still quite sheltered socially. I was carrying too much stuff just for a weekend and was uncomfortable in the cramped space. Suddenly a seat was free and I gratefully sat in it and began reading my book. Less than a minute later a man with an older lady was glaring at me and gesturing to the seat. I asked if I could help him and he said I had to move. I asked why and he gestured to the old lady. Now I’m not proud of this but I found public transportation so stressful that I got really upset as I had only just sat down. I explained that I had not seen her and noting in my head that she did not look so frail asked: “Could I sit here just for a couple more minutes then I’ll get up” the man glared at me and said to move.

Now I’d had a very stressful day and while I knew I should give the seat up I just felt so tired and did not see why I was being treated like a horrible person for a simple mistake. I even said as much to the man trying to explain my reasoning. He didn’t see that. What he saw was a grown man who did not immediately give up his seat to an old lady. It did not occur to him that I would not immediately know what he meant or that I might find it genuinely uncomfortable to do so. He didn’t know I had Autism so he just saw a rude man. End of story.

These stories are just a couple of examples of how people assumed because I didn’t look Autistic I was playing up or being obtuse. They never even thought to think “Maybe this person doesn’t see things like I do.” So if by any chance you encounter someone who seems rude and you think your being fobbed off with a lame excuse…Think twice. Maybe just maybe it’s actually sincere.

 I hate that people try to pigeonhole what is normal. One bit of advice I can give if you’re on the spectrum and find yourself being misunderstood-  learn from it, file it away and remember it. Also, don’t worry about explaining yourself. I know that is hard ask, I certainly don’t always stick to it!!! However, try not to worry so much after the event what’s done is done.

So what advice can I offer?

To those who know an Autistic person: listen and be adaptable. As I said there is no one size fits all approach for Autism. What works for one person will not work for others. You may think you know what a person needs but you need to make sure the person is happy with this. Don’t just say “this is what we’re doing” talk to them about what they want. They are a person. Don’t assume you know best. Listen and adapt.

To the autistic people reading this. My advice is don’t mask and it’s ok to ask for help. 

Do you know what masking is? It is something many autistic people do to try and hide their traits and appear more neurotypical. No one should have to act in way that’s not true to them. I know why people do it. To fit in and to have friends. Trust me as someone who tried to modify his behaviour in his early twenties, it’s not worth it.

Ultimately it will make you sad and make life harder. Also it makes it harder for people to truly understand Autism as they see an untrue version of it. I never knew I was masking until I read about it. I’m so much happier now. So many people on the spectrum have so many talents and unique views. So if you’re a person with Autism or you know someone I encourage you don’t mask your behaviour or encourage others to. Be yourself!

You can learn more about masking here https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-masking

It’s ok to ask for support too. This ties into not masking. Many autistic people feel they should not ask for support. That they will be judged for it. That others may need it more. Again this is not true. Whilst it is true people will not all require the same type of support that is because we are all different. It might be that you just need more processing time for some tasks or a quiet place to calm down. It might something you don’t need every day but it helps just knowing the option is there.

Again every person is different. So, if you’re struggling or if you feel your life at work could be easier talk to someone. Don’t bottle it up.