How disco helped my autistic son

Autism left Jimmy Hobley unable to read, write or make much sense of the world. But then his mum, Sheila, came across dancing classes for children

Before Jimmy Hobley discovered disco, he was desperate. He couldn’t read, couldn’t write, couldn’t make head or tail of the world. Then he began dancing. Jimmy is one of Sheila Hobley’s three boys, all of them autistic. It would be nice to be able to say that once he learned to swing those hips, the family never looked back, but the world is rarely as simple as that.

The family home is eerily calm as his parents talk about the havoc their children have wreaked upon it. Alex is 16, and the twins, George and Jimmy, are 10. When Alex was born, Sheila’s life was turned upside down. She was 26, didn’t know anything about autism, and was expected to bring up a boy who bit and scratched and tore his hair out, who had epilepsy, who found everything hard to learn, and had a number of obsessive compulsive disorders. It wasn’t easy, and Sheila and Alex’s father split up.

A while later, she got together with Andy. They both wanted children, and Sheila didn’t want to worry Andy by suggesting they might be autistic, too. Anyway, the experts said the chances were minimal – she was told there was a 1 in 1,000 chance of having another autistic child, figures that have nowadays been revised to between one in 80 and one in 100.

But, sure enough, the twins were autistic. Like Alex, they were born early, were dramatically underweight, and didn’t meet any of their developmental goals. The one thing they were good at was fighting. “They both had terrible screaming fits, and they were biters,” Sheila says. “And when you left, they’d just hold on to your leg like a dog mating, and you’d be trying to walk away and they’d be on it with their teeth, biting through your jeans. They didn’t sleep. Absolutely exhausted, we were.”

It got worse. “Even my childminder said she’d seen nothing like it. They were three to four months old, rolling around on the floor, holding on to each other’s hair, screaming.” Soon it was impossible to get childminders, and Sheila and Andy couldn’t go out socially together. How did it affect their relationship? “We’ve had rocky times,” Sheila says. “It made our relationship quite volatile at times, because the whole family setup was.” They both think it’s a considerable achievement that they’ve stayed together for 11 years.

When Sheila told doctors that she was convinced the twins were also autistic, they told her she was an over-anxious mum. But soon they were forced to admit they had been wrong.

By the age of three, George was hiding scissors and kitchen knives under his bed. He’d tell his parents they were to kill Jimmy with. “We’ve got hack marks from the breadknife all the way up to Jimmy’s room. And George had done that when we were asleep,” Andy says.

“Sometimes we were scared to go to sleep if we knew there was something missing,” Sheila adds. “We had to tip the mattresses up, and usually we’d find it under a mattress – knives, forks, scissors, sharp pencils.”

She couldn’t cope, and started to take antidepressants. “I’d be driving, and they’d be tearing the seatbelts off, getting into the front and biting me. They ripped books up, destroyed toys, wrecked everything. If Postman Pat was on telly, they’d try to destroy the telly. They just hated certain programmes.”

However aggressive George was, there was an equally tender side. “He is probably the most loving and the one who most needs affection,” Sheila says. “But he’s like Jekyll and Hyde. He can be so bloody nasty and he loves to upset people. He wants to see people cry. It makes him feel better. Then he wants a cuddle after he’s told me he hates me and he wants to kill me.”

She was desperate to find something to occupy the twins. And that’s where the dancing came in. They were about seven when she came across a leaflet encouraging children to disco dance. “I thought we’ll give it a go,” Sheila says. George wasn’t too impressed, but James adored it.

The front door opens, two high-pitched voices are squealing and it feels as if we’ve been hit by a tornado. The boys are home from their special school. Two things are immediately obvious: despite their problems, both are extremely likeable, and it is virtually impossible to chat to one of them when the other is in the room.

Sheila says strangers assume Jimmy was a natural on the dance floor – in the same way people like to think all autistic children have a “gift” – but he wasn’t. “When he started, he was wobbly. He couldn’t even link three moves together. You could see the teacher was fed up.” But soon he shone with his extraordinary high kicks and gyrating hips. He began to win local talent shows. Then regional talent shows. And before long he had reached the finals of the national Disco Kid championships. He became a little bit famous, and a TV film about him and the family was commissioned. The documentary, made by Liz Bloor, is funny, desperate, and often moving as it shows how Jimmy’s dancing talent affects the family.

The great thing is that his dancing has helped him in many ways – it taught him how to socialise and how to deal with success and failure; his reading, writing and maths improved. In short, his brain’s wiring, which had been so horribly twisted in his early years, started to straighten itself out. “It’s transformed his life,” Sheila says. “Jimmy was the most profoundly autistic one, whose future I feared most for. Now he’s planning ahead, has broadened his dancing range, and hopes to go to ballet school.”

I ask Jimmy how he thinks the dancing has changed him. First, he lifts his top to show off his six-pack. But that’s only the start of it. “In lots of ways, physically and mentally. Mentally, I didn’t know what was what. I didn’t really understand anything, but now I can understand George’s writing. I think it’s made me way more normal”.

Sheila says it’s benefited Jimmy 100%, but there’s been a price to pay for the family. Dancing lessons are expensive, especially with neither Sheila nor Andy working, and she admits the other boys have probably not had their share of the attention. “We’ve got less time together because there’s always one of us with Jimmy at ballet or disco,” Sheila says. In the film, we see George being dragged reluctantly to disco events. At one point he says if Jimmy were on the edge of a cliff, he’d help push him off.

Does he mean it when he says things like this? “Yes. I wouldn’t place it as harsh as that, but a lot of the time I’d rather not be with him. Sometimes even when I’m happy at school, I wish I was alone. I’d like to be an only child because when we get money we have to split it. I hope that mum and dad leave all their money to me.”

The boys are eloquent about their problems, particularly George. “Autism means you have learning difficulties,” he says. “You have trouble knowing stuff that mainstream kids pick up easy. Certain lessons are a lot harder to learn even though you want to. My behavioural problems are I just can’t keep my emotions in, I’ve got to let them out. And I’m working on that with my dad. Every time I want to cry I’ve got to try to keep it in.” There is also a positive side, he says. It might have taken him ages to learn, but now he’s a brilliant reader. “I’ve got hyperlexia, which means I can read a lot – words that I’ve not even heard before. I can read pretty much the entire English dictionary without much of a problem. And words upside down and backwards. It’s basically the opposite of dyslexia.”

“Do you wish you had something like Jim had?” Sheila asks him gently.

“Yes, but not dancing. I’d rather be a whizz at something else, maybe like the creative side of computing. Jim always boasts about his dancing and sometimes that really annoys me because I wish I could find something … Mam says I could maybe do rugby because I’ve got that kind of build.”

Anyway, George says, things will change soon if Jimmy gets into ballet school in Birmingham. Then they will lead separate lives and things will be easier. As Jimmy shows me some of his moves, and Andy and Sheila talk about the future, George mooches about. Suddenly, he drops a bombshell. “I suppose I’d secretly miss him,” he mutters. “It would be pretty odd because I’ve lived my whole life with Jim so far, but if that’s what he wants to do … “ And then the tears come.

ANNE AGBAJE