The first time I met the young child I’m going to call Mister Lively was at a road crossing where a lolly-pop lady helped schoolchildren across the very busy road. She’s a hard figure to miss, with her fluorescent yellow jacket a her ‘STOP’ sign. Me and a Lady I shall introduce properly at a later date were just walking toward the crossing, the Lady with the seeing-eye stick she uses as her sight deteriorates.
Mister Lively on that day was very upset, red-faced and shouting. He ran straight up to the Lady, gives her a smack on the belly and ran on up the street, his mother (who for this article is named SuperMum) not far behind, apologising all the way. It’s all too easy at times like those to roll your eyes, pass judgement on the parenting skills of the adults, pass comment on how ‘I wouldn’t allow my children to behave like that’ or ‘Leave him with me for ten minutes, he’ll soon learn how to behave’. The lolly-pop lady is a wonderful woman, who will stop and chat with anyone and it wasn’t the first time she had met Mister Lively and SuperMum. She mentioned as we stopped to say hello that the young boy wasn’t a bad boy or a naughty child, he was just afraid of her stick, and of course, the Lady’s seeing eye stick. His temper had been a childish reaction to something causing him great fear.
Many weeks later I stopped to talk to SuperMum myself. I saw her quite frequently walking along the path I take to work, always with her young son. He has an angelic smile and such a gorgeous head of hair, vibrant in colour, it makes me green with envy. It was then that she told me he is autistic, and his fear of sticks had been caused by an elderly lady with a walking stick who got on their bus – long story short, she was very mean.
A word like ‘autism’ is easy to say, but not such a simple concept. The little that I know about it, is that it is a spectrum, meaning that there are a range of symptoms and not everyone will experience all of them, or even similar to those of another person on the spectrum. It’s a sensory overload, and yet even that doesn’t explain exactly what is going on.
“The environment comes crashing down in his little head. The lights are lighter. The sounds are hurting his ears. He’s hearing things we can’t hear, he can smell everybody on that bus [referring back to bus journey where he met the mean lady with the walking stick] stinky people, dirty nappies, he can hear alarms going off, you know, sounds that we can’t hear. So all of that, all at once.”
It already sounds overwhelming and we’re talking about a child who is very young.
“You can see him go like that with his ears sometimes…” Here, she mimes Mister Lively, his hands hovering and waving over his ears, “And now I know what it is. There’s something that he’s hearing and he’ll say to me, ‘What’s that noise, what’s that noise?’. When you go into Tesco’s, you can hear all the refrigerators running, you know? He can hear it really loudly. The more anxious he gets, the more sounds he can hear.”
She goes on to say this is when he starts squawking and lashing out.
As far as support goes, there is some, though SuperMum mentioned that help isn’t offered and that parents need to ask for it.
“I go to Parents With Additional Needs. Now, they’re amazing because they discuss everything and put you in contact with all the organisations you need to be in touch with. Plus, you meet friends because it’s isolating. It’s only because he’s at school now that I can do this,” she gestures toward my coffee cup, and the kitchen table we’re sitting at. “Before that, It was two hours a day I was getting to do absolutely everything.
“Now, when he comes home from nursery we have a routine then. He has his tea. As soon as he comes in he has his tea. He’s not used to eating somewhere else so the school are really struggling with that bit of it. He won’t eat at school because he’s so fussy, he’ll only eat certain things, like he’d only eat beige things. A year ago, everything was beige porridge, easy on the palete, because if he had crunchy food it overloaded the sounds, on his teeth. But gradually, he’ll eat hard things now.
“You’ve got to find all these things out for your child, his experience.”
And there we get a little closer to why autism is such a difficult thing to comprehend. It’s as unique as the person experiencing it, and can’t be truly understood by those who don’t. Add to this the generation for who autism never existed, and you have a society that leaps to conclusions based on a three second meeting with a harassed parent and a screaming child.
“I’ve been shouted at, I’ve been pushed, and you get people just stop, especially older people, stop and stare at him which makes him worse because eye-contact… a lot of the time he doesn’t recognise facial expressions. So, you’ll just get people who stand abruptly, with hand on hip,” and again SuperMum mimes the pose, “looking at him, like that’s going to help! Eye-contact, when you get two people when he’s like that, doing that, he goes absolutely haywire. He goes even worse.”
“I’ve had a lot of negativity. People just don’t see why he’s doing that.
“I bought a dog-lead on a market stall, and they had to make it, so I had to go back. There were quite a few people stood about who worked on this stall, all older people. Now, he was squawking because they were taking so long. He doesn’t do waiting very long and was tired. To somebody who doesn’t know, it’s like he’s just being naughty, but he’s not. There were too many people there, he wanted to go but I couldn’t go until it was done, obviously. Then one of the men did a noise back to him, and they all started doing it! He was going haywire. Then getting him home that day, because of what they had done, he was like that all the way home.”
SuperMum does try to explain, but as she says, people like that are unwilling to listen. They just don’t hear it.
“It’s so frustrating. It’s hard to see him like that because I know it’s everything.” With a smile she says, “oh he’s naughty! Don’t get me wrong, he is naughty, but it’s that mainly.”
She carries on talking, telling me about how she loves to be at home with him, where she knows he’s safe and feels safe. He’s happy and they play, and he is a loving child who loves cuddles. I can’t help but think back to the times that I’ve seen them, and realise that I’ve seen that in him as he and SuperMum pass me on those walks to work.
“I get a lot of praise as well, because everyone knows him in [Place name] now. When I go in, security guard will give me thumb up and he’s watching him at the disc aisle, because that’s his favourite aisle and he likes the photo booth, so he’ll watch him while I run round and get the shopping.”
Going a little into the daily life, SuperMum says she can’t just nip to the shop.
“It’s ‘Toy shop’. And they’re absolutely fantastic with him in there. We have to go to Toy shop, then to get him out of that shop we have to take him to the next shop. I can’t just go and get a pint of milk and rush home with him. Everything has got to be thought about.
It’s draining sometimes but you’ve got to prepare everything. You can’t get up and say, ‘Let’s go such-and-such today!’ because even though it’s going to be fun, his mind whirlwinds then. Everything takes over, everything’s an issue. But if you do it as a gradual thing, he’s not as anxious.
“The people here, every routine we have, like Tesco’s, the people here know him and they know how to deal with him. The bank, they love him in there, and post office, we go to the front of the queue because it hates it in there, all those lights. People round here are amazing.
“You go on the stalls, the fruit stalls, and they love him to bits! They all show an interest as well, they ask about him when he’s not with me.
McDonalds…! When I first moved here, I didn’t know the place, I got off the train and my (other) son said to me, ‘Meet me at Mcdonalds’. So now, every time we go to town, we have to go to Mcdonalds, whether he’s had his dinner or not. We have to go there first because he associated [Place name] with Mcdonalds. The staff in there all know him. He has an orange balloon every time. He wants to sit upstairs. They opened upstairs for him yesterday! They were all getting cleaned upstairs, but there was no problem they opened it up and let him sit upstairs.
Once you talk to people and try and explain why he does what he does – which I do, I must bore people to death – you get me at a bus stop, you’re getting it all! I didn’t know any of it, now I know people with autistic children. Just the other day someone said to me, ‘do you not discipline him, smack him on his bum?’ and I couldn’t imagine! It’s not about their naughtiness, he’s not being naughty. If you take him out of that environment, he wouldn’t have done that [the hypothetical ‘that’]. It’s frustration and he doesn’t know what else to do.
I have to do these things, because what you have to think of is if I don’t have the specific things Mr Lively eats… I can’t run out of anything. He doesn’t get it. If you say, ‘no, I haven’t got any’, he thinks you’ve got to go get it. At his worst, about 8 months ago, I was frantic because I only had two hours to get everything in place. I was always dashing about. I didn’t brush my hair, some days I didn’t even brush my teeth. Because of his sleep patterns, he power sleeps, so at his worst if I had two hours sleep a night I was lucky. Because he won’t be by himself, when he does wake up during the night…” SuperMum begins to giggle, “he tries to open your eyes! Oh, and I so don’t want to open my eyes, because when you do… ‘Down! Down!’. So, you’re prising your own eyes shut. Even if you’re sleeping, if he opens them, that means it’s up time. You have to get up, doesn’t matter what time it is. At the minute, he’s struggling because it’s dark in morning and it’s dark early in the evening. ‘Is it morning? Is it morning?’ he’s so confused, so I’m trying to show him, it’s morning at the start of the day when you wake up and it’s night at bed time when you go to bed and you go to sleep. He’s got no concept of time. Once he got that in his head, you get up! It doesn’t matter what time it is. Once your eyes are open – and he helps you – it’s time to get up, but you adjust.
“I think it would be really hard if I had a partner. It would be a struggle to survive a relationship and I take my hat off to anybody in that because I couldn’t imagine living with anybody. Sometimes you go days without sleep.”
While it might be tempting to think SuperMum must feel lonely for love, it’s so clear that Mister Lively is her entire world. The love in her voice as she talks about him couldn’t begin to compare to any other person she may have in her future.
“I’ve seen him lay there,” she goes on to say. “I know he’s awake and he just lays there because he knows I’m tired. He’s very loving.”
“One day I’m on phone, gibbering away, when he came in and went ‘Plop!’.
‘Plop, plop, plop!’
“He was giddy and excited, so I put the phone down and went into the front room. It looked like a massacre had happened. He’d put the fan on…” she points to the ceiling fan, “and then thrown strawberries. They’d ricocheted off it! Onto the windows, all over the walls, all over the ceiling, they were dangling off and he thought it was great! And he just stands there and goes ‘Plop!’ because they’re all falling down. There are moments, where’s it’s so hilarious…! For days later, he was saying ‘Plop’, trying to tell people what he’d done.”
SuperMum has a laugh that comes from her toes.