Autism, Disco & Me: How Dancing Saved My Son
But watching the programme highlights that living with autism is not just a challenge for the children who are diagnosed, but that it affects the whole family. Parenting one child with autism must be hard enough but all three of the children in Sheila Hobley's family have been diagnosed as autistic. After watching the show I was keen to talk to her about filming the documentary and her experiences of living with autism.
Sheila, what motivated you to be part of the documentary?
Until recently people thought that autism was quite rare but with better diagnosis experts now think that as many as one in a hundred people are autistic and possibly even more. So I feel it's very important to raise awareness of autism so that people can learn more about it.
You allowed the film-maker Liz Bloor to have intimate access to your family, were you concerned about how that would affect all three boys?
When we first agreed to make the documentary we did think really long and hard about it because it's strange when you open up your life to potentially millions of people. We've always been quite private as a family and very anonymous up until now. I did wonder how it would affect the boys but in a strange way it's been really good for them. They got to know Liz and Alan who came to make the documentary really well, so in a few weeks it was like they weren't there or they were just part of the family. The boys were quite natural, it was me and Andy who were sort of trying to act or sort of show our best side for the first few weeks. Then I think we just got used to them as well, you know. It was actually quite sad when we said goodbye, I actually cried a bit because they had become part of the family.
Let's talk about the dancing, in the documentary you talk about the physical differences that it made but you also believe that dancing re-wired James' brain. Tell us more about that...
Before James started dancing he was actually the most autistic, if I can say that, the most classically autistic out of all three boys. Jimmy was always there locked inside somewhere but it's almost like someone switched the light on when he started dancing. It's about the only way I can describe it and he's just found a personality. It's almost like he seemed void of a personality and his life was very simple. He was eight years old and he was still not reading and writing but six months later he was reading and writing and it was full words and then full sentences. It all happened so quickly - it's like something clicked suddenly. It wasn't a gradual thing. The other thing that happened through the dancing was that he started giving eye contact to people and actually smiling at people. And he had to do this because when they're in competition they've got to try to give a cheeky wink or a smile to the judge on the way past. And now it's almost become second nature to give us eye contact at home all the time which he never did before.
In the film, you visited Elmhurst School for Dance and Jimmy started ballet classes. Since filming is he still doing both ballet and disco?
He's doing both at the moment. We found a RAD (Royal Academy of Dance) school and he's gone right through his RAD 2 syllabus in just three months even though it would normally take a year. If he got into Elmhurst or a special ballet school, I don't think he would have any regrets about dropping the disco dancing as ballet is actually where his heart lies.
In the documentary we see you trying to encourage his twin brother George to take up dancing or another hobby. Has he managed to find something that he's really interested in?
It's always caused problems as the twins are very close and very competitive with each other. George is desperate to find something and he thought it would be ballet so he started modern ballet with Jimmy. They did a Christmas show and he absolutely loved it. But after the Christmas show that was it, he didn't want to go back anymore. Then he tried the clarinet for about three months. Now he's still thinking about rugby so we're thinking of starting him after the summer, unless he finds something else in the meantime.
But we try to give the kids as many experiences and opportunities as possible because with Jimmy he showed no inkling in being interested in music or dancing. It was just a pure chance thing that he found that. So I always say if we can afford it, if it's humanly possible then we'll push the boat out to try and let the boys experience as much as they can.
You know it may be that George never finds that special thing, a lot of us don't, but I'm going to give him every chance to.
And finally, I'm sure lots of people who have contact with autistic children will be interested in the documentary. Do you have any advice for other parents?
I think the thing I was most conscious about when we did the documentary was that I didn't want everyone with a child with autism to think I was saying every child should dance. Obviously it's a really large spectrum and every child's different and all of my three are completely different. But I think that the main thing is to raise the awareness that a child with autism has dreams just the same as any other child out there and with the right help and support they can actually achieve those dreams. They can reach their potential; they just need the right support and understanding.
The other thing I always think of is that the world is set up for mainstream people and it doesn't mean that autism is wrong or that that they are inferior to anyone else. It just means that they operate differently and I think it's up to the rest of the mainstream world to make allowances and to give them that chance. Operating differently, as in Jimmy's case, can be a really good thing. I didn't expect him to be able to dance or want to dance but it just shows what they can actually achieve.
So I just think more awareness is the most important thing. Parents with a child with autism should know it's not the end, it's just the beginning. You don't know what they're capable of.
Sheila Hobley features in Autism, Disco & Me which is on Thursday at 9pm on BBC Three. You can also watch it on iPlayer shortly after.
You can also read a blog post from the director and producer Liz Bloor on the TV blog.
- Also on the BBC Three blog: The Autistic Me - One Year On: Interview with Tom and Kirsty
- More information about upcoming Autism programmes on BBC Three.
- BBC Health: Autism
- Take the OU Autism Quiz
- More information about the Disco Kid Dance competition
Dana Stevens is content producer for BBC Three online.