My son is nearly 22 and was diagnosed with autism/learning disabilities when he was 2. He’s an amazing man. He has a unique and refreshingly direct way of viewing the world.
He lives in adult care where he gets plenty of support from the staff and sees us regularly. The staff is great and he is happy. As a mum, that’s all I want for either of my two sons — happiness.
When my son first moved into his home I felt slightly jealous of the carers. If they took the adults out, people could see that they were a group of disabled adults being supported by carers and would be more forgiving and understanding.
When I took my son out we looked like a lady in her forties with a man in his twenties. People didn’t understand why we were taking longer at the till or stopping to ask questions to people in the middle of the high street. They definitely didn’t understand why we were walking around the shop looking for speakers on the walls!
It was the same when he was little. I felt slightly jealous of the parents whose kids had obvious disabilities like Downs Syndrome or who were wheelchair users. Then I felt bad for the way I thought!
When my son was young I bought some business cards that said something like ‘This Young Person Has Autism’ on the front and on the back it had a brief description of autism. Guess how many I used?
Zero! When we were having a difficult time, I was focused entirely on us and our situation, totally oblivious to the people around me.
Looking back, I’m glad that I never used them. To explain why; I’ll tell a brief story of a lady I met in Costa a year or so ago.
I was sat in Costa with my husband, no kids because they are both grown up and were doing their own thing. There was a lady on a nearby table, with a very unhappy little tot. I’m not good at guessing ages, but I think he was probably about 2. He was having a full meltdown or tantrum. I looked across and could see that the mum was trying to get him into the pushchair and struggling — the pushchair kept tipping backwards as he kicked. I empathised with her. I’ve been there, it’s awful. She was getting cross, stressed and complaining about the people who were staring. I went over and asked if she needed any help. She was grateful, explained that her son was autistic and complained about the staring, grumbling people. I told her about my son, and suggested that maybe some people were apparently staring because they wanted to help but we’re unsure how. Maybe they were looks of sympathy. She was definitely not convinced, but seemed to appreciate the chat.
I didn’t help the lady because her child was autistic. I didn’t know he had autism. I helped her because she was struggling and I didn’t want her to feel judged.
The reason I have never used my ‘This Person Has Autism’ cards isn’t idealistic or principled, it is because I was always too busy dealing with the situation. When we had a problem, I didn’t consider the world around me. I wasn’t capable — I became quite blinkered. By the time I was able to consider giving cards to people, the moment had passed.
But I’m glad that I didn’t use them. I don’t think we need them. I think people have more empathy than we give them credit for. Like I said to the lady in the coffee shop, people are often not judging. They are uncertain or afraid to help. They don’t know what to do, so they don’t do anything. They either stare or look determinedly in the other direction! Cards explaining a person’s behaviour and disability shouldn’t be necessary. We should be tolerant of everybody. We shouldn’t need to know what is ‘wrong’ with them.
I think it can be a problem of perception. The young mum perceived that the other guests were judging. I perceived that people were judging me when I was out with my son. There isn’t much evidence to back that up — it is just how I felt. My distorted imagination. When I’m out with my son and a queue is building up because he’s struggling to count his money, reluctant to use his money (that happens quite a bit — he hopes I’ll pay!) or just having a lovely chat with the checkout assistant — I don’t notice any odd looks or judgement. No one has ever said anything negative to me about his behaviour or how long we’re taking.
I’m not totally naive, I’m certain people must grumble if we hold them up. That’s fair enough, but I’m grateful that people don’t say anything to us. It would make me feel more stressed, and we’d probably take even longer as a result!
I don’t think that people want to be like the critical, judgemental strangers that the mum felt were watching her. We want to be non-judgemental and to accept people with disabilities, but we don’t always know how. We don’t know what is socially expected of us in that situation and look away. We need to be braver in offering help to show support, regardless of the reason, as I did in the coffee shop. It is really hard to talk to someone who appears to be different or having a tough time, but it gets easier the more we do it. It’s not like approaching a lion or stopping a moving train. It is just a quick word with someone or a supportive smile.
It doesn’t matter why the person is struggling. They may be small and having a tantrum. They may have developmental disabilities like autism/learning disabilities. They may be older with mental health problems or dealing with dementia. It may be that no one knows why they are behaving as they are. Maybe they are simply having a bad day!
Staring and judging is awful. Would you judge and stare if the person was wearing a t-shirt with their disability written on it? Probably not. You’d feel sympathetic.
Then…you should use that sympathy and offer a kind word anyway.
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