There's a growing recognition that in order to understand autism neuro-typical people need to hear directly from autistic people and realise they are the experts. There are now lots of autistic adults who have been able to share their experiences and this has been hugely helpful. We have heard less from children and young people, although this is starting to change.
My son (who is autistic) once said to me, when he'd been pushed too far, “Adults never listen. I tell you all that I can’t manage something and you still make me do it”. Since then I have tried to remember to ask what is happening for him when he seems stressed - not to make assumptions - and then really listen to the answer. This has been a real turning point for us.
So, in the spirit of listening and learning, I have interviewed an autistic young person about their views and experiences. We both hope that it will be of help and interest to others. For the purposes of the interview he will be referred to as "D".
A: I wanted to start of asking you about some of your favourite things. Can you tell me what they are?
D: DnD (Dungeons and Dragons - a fantasy role-playing game)
A: And why do you like it so much?
D: There’s freedom and yet there are still structured rules. The freedom is that no one tells you what your characters should do, and you can use your imagination to come up with the ideas. But there’s still structure so you can’t just fly to the moon if you don’t have the fly spell, and you can’t just attack however many times you like, because your character has a specific number of attacks. Structure is good.
You also get to experience the different advantages and disadvantages of being different people and characters – say you played a barbarian you would be extremely not very intelligent, but brilliant at whacking things with your axe. But if you were a wizard, you would be brilliant at intelligence but not very strong.
A: Have you got another favourite thing?
D: Warhammer. It’s a fantasy strategy game with lots of different models that you move on the table, and you paint them too which I like.
A: Why do you like painting them?
D: It’s therapeutic. It makes me feel calm and nice.
A: Great! So, moving on, how do you feel about lockdown?
D: Well Mummy didn’t go out of my sight, which is nice. She didn’t go off and I got to see her all the time.
A: Why is it a problem, Mummy “going off”? How does it make you feel?
D: Bad and sad. When she’s not there it’s more worrying. She knows me and understands me and she's predictable. Other people might ask me things and I don’t know what to expect. If she does go, I’m so, so happy when she comes back as I’m always a bit worried that she might not.
A: You’re not in school now, but thinking back to when you were – how did you used to feel?
D: Bad. 8 million trillion on the scared-o-meter, finding it hard to breath – like I was turned to stone.
A: How do you feel now you’re not in school?
D: A lot better.
A: What’s good about having your learning at home and out and about, not in school?
D: I’m with nice, kind people, and I get to do interesting things which I enjoy.
A: So, you get to do different things that you wouldn’t do in school. You also do some learning with your Daddy at home at the moment too – do you like that?
D: Oh yes, Daddy is fun and predictable. He chooses nice, interesting things to do. And there's lots of visual things like videos that we look at together which makes it better. And lessons not going on and on, doing little bits of things instead. Otherwise I start to think about other things like Warhammer, and can't concentrate.
A: You also have tutors, who you’ve said that you like. Can you tell me what makes them good teachers?
D: Oh yes. They’re nice people. They make things fun and don’t make me feel tested. At school there were lots of tests all the time. It made my head scream. My brain said "get it over with", but told me not to scream out loud. You have to pretend to be ok – I would put on my thinking face and my listening face, otherwise you get into trouble.
A: Thinking about other things you do like – why do you love spending time with your support worker? What does she do that’s so good?
D: She really listens to me. She doesn’t treat me as a child. She treats me as an equal. Unlike some people. I trust her and we have lots of fun together.
A: Ok, onto other things – bedtime used to be a big problem but now it's better isn't it? What makes a good bedtime?
D: A structured routine. You need to build down to bedtime, or build up depending on your view.
A: So, if someone just came in and said “right, time for bed” without your long bedtime routine, that you were involved in creating, what would you say?
D: No, I’d literally just say no. I'd feel really stressed. If you build up to it you feel like you’ve had a lot of warning, and less pressure. And I like our cat coming and sitting on my back at bedtime. It’s good to have a pet.
A: Ahh, why is that?
D: It’s therapeutic. They make you feel calm, as they’re quite predictable. They eat, sleep, bed. Maybe walk around abit. Repeat. Unlike people.
A: Do you think children are more unpredictable that adults?
D: Well, you have to know them. Because otherwise you don’t know what they’ll do or how they’ll react, or how to talk to them. If I don’t know someone I want to run away.
A: What about if people come to your house?
D: It depends on who they are. If it's my best friend it's really nice, he's predictable. If it's friend of Mummy’s who I like, then I don't mind, I let them get on with it. If it's someone I don't like I'll tell them to leave. If I don't know them at all, I’d try and get to know them. Then if I didn’t like them I’d need them to leave, but if they were kind and nice I’d say to them “do you know what, you’re actually quite nice”.