Autism: Challenging Behaviour


Autism: Challenging Behaviour

Documentary exploring the controversy around ABA (Applied Behaviour Analysis), an intensive intervention used to treat autism, by meeting people who are both pro- and anti-ABA.


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Transcript


LineFromTo

This is where it is frustrating,

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because I really, really want to know what he's trying to tell me.

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Because he's very intelligent.

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And I just think "Oh, I wish I could understand."

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He doesn't know that he's going to school for the first time.

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He's always seemed to be in his own world.

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Jeremiah and Jack have both been diagnosed with autism,

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a lifelong developmental disorder

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which affects 1% of the population.

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They're about to start at a school which uses ABA,

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an intensive intervention which aims to change autistic behaviour.

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We didn't know anything about ABA.

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But we found out that parents are moving from Belfast, Liverpool,

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Manchester, to this area, to put their children into this school.

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We're hoping there will be

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a lot of changes in him.

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I like to think that he doesn't have autism.

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He goes to Treetop and two years down the line he'll be OK.

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My job as a professional is to choose the method

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that has proven to have the best effect, and ABA is that method.

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'Oh, it's so exciting because I've been waiting for this place so long.

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'I just know it's going to work.'

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I can see from a parent's perspective

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that ABA might be attractive.

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But when people devise interventions

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I don't think they really think about the potential harm.

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Bye-bye, Jack.

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Try this, copy me. We shuffle the cards! Yeah, buddy.

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You can have a crisp, there we go.

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So we build a Lego, we build the Lego. Fantastic, try this one.

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Copy me. Can we build a Lego? Fantastic, dude.

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You can have a sweet. Well done.

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Applied Behaviour Analysis, or ABA,

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uses a system of rewards and consequences to modify behaviour.

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It is based on the discoveries of psychologist BF Skinner

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and his experiments with rats and pigeons at Harvard University.

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Touch white. No.

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ABA was first applied to children with autism in California

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in the 1960s and '70s.

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What do you want? No.

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Right. Go to the corner.

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Ever since it first appeared, it has raised questions

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about the rights of children with autism.

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Naughty, look at me. Naughty, naughty.

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If I had a child who was three years old

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and appeared to be a violin prodigy and I thought,

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"OK, we're going to do 40 hours a week of violin drills,"

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social services would be

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knocking my door.

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But if I have a child with autism,

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it's OK.

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-What do you want?

-I want cookie.

-Good!

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When I first knew of ABA, I remember thinking,

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"Oh, I don't really like it. It's like dog training."

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Having seen it now and seen how you motivate children

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and the kind of results you can get if a child's well motivated,

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to if the child isn't motivated at all,

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now I'm the opposite, and I think anything goes.

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Use what they love to get them doing what you want them to do.

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Tickle, tickle, tickle! Ready?

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ABA has changed radically since its early experiments,

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and is now used widely in the US.

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But not here.

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Jack and Jeremiah are starting their first term at Treetops,

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which is the only state school offering a full ABA programme.

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When the children first start with us,

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we find all of the things they like,

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to get them to want to come to school, to enjoy being here.

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You know, it's all based around fun.

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It's autism heaven, because they're getting everything that they love.

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It's impossible to know

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how Jack and Jeremiah will be affected by autism as they grow up.

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The condition develops differently in every child.

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During this time we do an assessment of the children.

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Eventually they will start actively teaching them new skills.

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I mean, a lot of people would look at this child

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and not really be able to see that much trace of autism in this child.

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But he has got some.

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There's your fishy.

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I actually thought my son hated me,

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because the way he was lashing out,

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I couldn't comfort him.

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It was awful, and that's what nearly

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just brought me to breakdown.

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I would say I was very close, very close,

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during his biting period, very close to breakdown.

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The kind of child that you say is engaged in their own world,

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nobody can really get in on the fun or interact with them,

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because they haven't been taught any other skills.

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Sometimes you have to block that self-stimulative behaviour

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otherwise you can't engage them in anything else.

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They won't be able to learn anything new.

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I'm not very good at looking after him.

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Five minutes is enough for me.

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You know, I get

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really, really stressed.

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There's no speech, no eye contact.

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He doesn't follow any instructions at all.

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And he doesn't know when he's hungry,

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when he wants a glass of water, or anything like that.

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What, for you, is the thing that you find most stressful?

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It's very difficult to say.

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When you think about it, he hasn't called me Dada, you know.

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Erm...

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He hasn't said Mama.

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One of the features of Jeremiah's autism is that he finds it difficult

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when asked to move from one activity to another.

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What's happened is, he's got used to people following him around

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and people not really knowing the skills that you need

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in order to be able to engage a child.

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All you need to do to change behaviours

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is to reward the behaviours that you want to see

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and don't reward the behaviours that you don't want to see.

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If you ask a child to do something

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and they cry to get out of doing it,

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make sure the crying or the biting

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doesn't get them out of doing the task.

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In a demand situation, the demand just stays on the child.

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Nothing else happens in your world, nothing else fun's going to happen

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until you follow through with my request.

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Sometimes that may take five minutes,

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sometimes it might take three hours.

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It might take three hours on one day,

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the next time it'll be less time,

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and then soon you get a child that's complying with all your demands.

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Before coming to Treetops, Jeremiah was at a mainstream nursery,

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where he made very little progress.

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70% of children who have autism

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are able to go to mainstream schools.

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Only those that are more severely affected attend special schools.

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-# Hello, hello

-Say hello

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# Hello... #

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15 miles from Treetops,

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St Christopher's also has a large percentage of children with autism.

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Like the overwhelming majority of special schools in the UK,

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it has rejected ABA.

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I think it's the rigidity that perhaps ABA offers

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over other approaches that maybe we sort of avoid.

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# How do you do? How do you do? #

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All our children are individual, like we're all individual,

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and it's about educating those people around them,

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whether that's in school or in home, in society.

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I think it's important about learning to accept people

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that are a bit different.

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The fundamental question about the education of children with autism

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is whether to accept these autistic differences

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or try to push children to learn new skills.

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There's a huge clash of ideologies.

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Many people believe that autism

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is a different way of perceiving the world,

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and that we shouldn't necessarily believe

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that there is one normal development trajectory

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that people should be following.

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And on that view, you understand

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that the child has differences and that's OK.

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The aim then is to support that child in negotiating the world

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without trying to fundamentally take the autism out of them.

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No, Ricky, put it on top of the dresser.

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Ricky! That's inside, put it on top. Good boy.

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In ABA, at least historically, one of the main aims

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was to make autistic children indistinguishable from their peers.

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And so if that's your perception of what autism is,

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something that needs to be fixed or something that needs to be cured,

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or made normal, then ABA would be the route to go down.

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Gunnar Frederickson is an independent ABA practitioner

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who works with families all over Europe.

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He believes it is possible for some children with autism

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to be brought out of the condition.

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I don't appreciate autism.

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I cannot see anything good about it, to be honest.

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I think we should fight against it, by all means,

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as early as possible and as intensively as possible.

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SPEAKS OWN LANGUAGE

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OK, clap.

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Tobias has no language

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and finds it difficult to engage with the world around him.

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Gunnar has been working with him for four months.

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Clap! Clap!

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TOBIAS CRIES

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What kind of changes have you seen over the last few months?

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He has opened his eyes

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and he has opened his ears.

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It's easier to give him short messages,

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like "come here", "sit down",

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"give me that" - stuff like that.

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And he is a lot better with the eye contact.

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Tobias? Tobias?

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TOBIAS SCREAMS

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There's a lot out there in the autism industry

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trying to sell to parents that

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you can change your child,

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that the autism is a kind of

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medical, separable appendage.

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But autism is the way your brain's wired,

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the way your brain has developed.

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You can't remove the autism without removing the person altogether.

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He seemed to be angry at me when I offered him sugar milk.

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OK.

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And that's quite unreasonable.

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When a nice man offers you sugar milk

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you shouldn't start to cry or be angry, you should be happy.

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But he wasn't.

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But I enjoy that because I want him to be more angry.

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I want him to show his temper more.

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-Because he will use that to learn and pick up new things.

-Yeah.

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We work with children with autism,

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which have a very, very serious problem

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with a very, very bad prognosis.

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You cannot be afraid of conflicts.

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You cannot be afraid of crying, unhappy children,

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resistance towards demands.

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Then I suggest that you do something else.

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The use of punishment by early practitioners

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gave ABA a reputation for harshness that has been hard to shake off.

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SCREAMING

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But while punishment is no longer used,

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many in the autistic community

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continue to question ABA's basic principles.

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'The science it's based on is the increase or decrease

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'in a behaviour deemed appropriate, or not, by non-autistic people.'

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It can teach the child that it's not OK for them to be as they are,

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and that they have to act differently,

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not like themselves, not naturally,

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in order to be loved and rewarded

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from the people around them.

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Good boy, well done.

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Jeremiah, can you match?

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Jeremiah, can you match?

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See this? See this?

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Good boy. Copy me.

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Excellent, well done, Jeremiah, good boy.

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You can have a raisin.

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Jeremiah, can you match?

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Match, good boy, well done, Jeremiah.

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Can you match?

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Match! Clever boy, well done, Jeremiah.

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There we go, you can have these and you can have your raisin.

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Clever boy. Jeremiah, can you match?

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Yeah, clever boy, Jeremiah.

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You matched. Excellent. Here we go.

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You can have the beads, you can have the bells and you can have a sweet.

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Good boy, Jeremiah. Excellent.

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I think my mum brought me up behaviourally without knowing it.

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If she asked me to do something, I had to do it,

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there was no choice about that. If I was good, I got things.

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COMPUTER VOICE: P-U-M-P-K-I-N.

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Pumpkin. Give me ten, pal. Spud me.

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Whoo! Right, you can have your 14th tick.

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Shall we have some mushrooms? Yeah, we can have some mushrooms.

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There you go, pal.

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It's a very scientific approach, but when it's all broken down,

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to me it just makes sense.

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It's just, you know, it is just good parenting, it's good teaching,

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it's teaching children to gain skills

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and to be free of some of those behaviours that are enslaving them.

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Tuck in your feet and hands.

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-Ouch.

-That's it. Fold your hands. Good boy.

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Jack, touch your hands. Copy me. Copy me.

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Good boy, well done, Jack. Good boy.

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There's your lion.

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Although Jack has good social skills, like many children

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with autism he struggles with routine and has problems with food.

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That is Jack's diet for two weeks.

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That's all I can get into him.

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Yes. Are you going to do it, Jack?

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Will you do it for Mummy?

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Good boy, well done.

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What would happen if you fed Jack anything other than that now?

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He would projectile vomit. Definitely. It would just come out.

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I have tried so many different things. Grinding food up.

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Just trying him with, like, a bit of egg on toast,

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cutting it really small.

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There's just no end of things I've tried.

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He just gags, and that's it. He's just sick.

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I just want to see Jack eating foods that children his age

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would be eating.

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He can't be on this jar food, like, when he's 16.

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Do you know what I mean?

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It's just going to go on and on and on.

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And do you feel it's better for the school to tackle this than for you?

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Definitely.

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I've dealt with many things with Jack,

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but the food situation is a very, very difficult one.

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I'd like to be able to take my son to a restaurant, which is

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just not possible at this stage.

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Look at you.

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Lesley started using ABA at Treetops 11 years ago.

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To make it possible on a state school budget,

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she recruits unqualified tutors who she trains and supervises herself.

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The people that we've got working with the kids,

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they're not super highly-trained people. I think

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you can teach the science to almost anyone if they're intelligent

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enough, but you can't teach people to be around kids and like kids.

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So I try and find people that are naturally good with kids.

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Push! Good boy, ready? OK. Push, good boy.

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The school now has 70 pupils on

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one-to-one programmes.

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I do show parents when they come round that not

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all of the children are going to speak, we're not going to

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cure your children, but I do think everyone's reaching their full

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potential, and that's the important thing.

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Know what this sound is, this is...?

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N.

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Excellent, well done, everyone have a token, brilliant.

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-And this sound is?

-M!

-Brilliant.

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One, two, three, four, five.

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Right, that's five, Joe.

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There is sometimes a really visceral response when you say ABA.

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Some people just really hate it, and others obviously don't.

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Others think it's been highly effective with their child.

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But because ABA is so intensive, you often have to work

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one-to-one with a therapist and child, it's therefore expensive.

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So it costs, either parents if they go privately,

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or local authorities, so taxpayers' money, a lot of money,

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in order to deliver ABA to autistic children.

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-And what did you do yesterday?

-Yesterday.

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Where did you go yesterday with Daddy?

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Where did I go?

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-It starts with A.

-A.

-Aah.

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-Aah.

-What did you see? Tell me.

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-You went to see some fish, where did you go?

-Aquarium.

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We're trying to teach him recall, which is quite hard.

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It's like a new concept.

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He's 13 and he has the functional age of a seven-year-old,

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so we have quite a way.

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But as you know, we have all the time, don't we, Reuben?

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For parents like June, who don't live near Treetops and want ABA

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for their child, the only options are to set up a home programme

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or fight to get funding to attend one of the few ABA private schools.

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My son went to a local authority special school.

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He was failed very badly.

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I got him out of there and started on an ABA programme

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and he started talking.

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So, you know, I mean, since he's been there now for

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many, many years and he's doing very well, as you can see.

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He's doing a lot of writing.

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But I know a lot parents who didn't have...who don't have

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the resources to either run the home programme, to get the evidence

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that the ABA works, and then to mount a tribunal appeal

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to move their child into a specialist ABA school.

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I know a boy called Matthew,

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he was at the same school that my son was at, and he was there

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for six years and he made absolutely no progress at all.

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Actually, in fact, he regressed,

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and his mother wanted ABA but didn't have the resources to make it

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happen, and now she's taken him out of that school

0:20:520:20:56

and she's home-teaching him and trying the best that she can.

0:20:560:21:01

Go on.

0:21:010:21:02

Go on.

0:21:050:21:06

Go on.

0:21:080:21:09

Go on, hold it.

0:21:130:21:15

Well done.

0:21:190:21:20

Do you feel that Matthew's been let down?

0:21:260:21:30

Yes. He's been in that school six years with no progress.

0:21:300:21:35

The school have spent six years - almost nothing. Yeah. You want soup?

0:21:350:21:41

OK.

0:21:410:21:43

So I have to give up everything at my end to look after my son.

0:21:430:21:48

More bread. Here.

0:21:530:21:57

What has happened?

0:22:000:22:02

Since 2005 he's been in that school - what have they done?

0:22:020:22:05

A child who was able to count up to 17

0:22:080:22:11

now only can count up to ten independently.

0:22:110:22:16

That's not progress.

0:22:160:22:18

By now Matthew should be able to count up to 100,

0:22:180:22:21

but Matthew cannot - only one to ten, a 14-year-old.

0:22:210:22:25

What are you hoping for now?

0:22:250:22:28

Well, I just want a full ABA programme for my son.

0:22:280:22:34

You know, I need funding, which I haven't got.

0:22:340:22:37

I'm just trying here and there to get some funding, which is

0:22:370:22:42

not coming through.

0:22:420:22:44

I want him to be independent and be able to pay back the society.

0:22:440:22:49

That's what my aim is, to be fully part of the society, not excluded.

0:22:490:22:56

-Look.

-Frog.

0:22:590:23:02

Frog, well done. Look, Um...

0:23:020:23:07

-Umbrella.

-Umbrella, well done.

0:23:070:23:09

I'm the mouthpiece for him.

0:23:110:23:14

He didn't ask for this disability to come. It just happened.

0:23:140:23:18

So then the least you could do is help him.

0:23:190:23:22

If you talk to people with autism, or

0:23:240:23:27

if you, for those who can't speak, if you spend your time observing

0:23:270:23:30

them, what you'll see is a different cognitive style, a different way

0:23:300:23:34

of learning, which is overlaying a different sensory perceptual system.

0:23:340:23:39

It's not wrong, it's just different.

0:23:410:23:44

These differences can vary dramatically over a wide

0:23:470:23:50

autistic spectrum.

0:23:500:23:51

Are you going to wear your scarf today?

0:23:510:23:54

You should, with that. You had a sore throat yesterday.

0:23:540:23:58

OK, I'll put it on.

0:23:580:23:59

It was only when he started

0:23:590:24:01

going to nursery school that

0:24:010:24:02

I really noticed it.

0:24:020:24:04

He was crying, he was rolling about the floor,

0:24:040:24:06

he was climbing under desks...

0:24:060:24:08

He would get very upset.

0:24:080:24:10

He would have meltdowns.

0:24:100:24:12

He used to lash out.

0:24:120:24:13

'I'd been called into the school lots and lots cos of the problems,

0:24:150:24:18

'and the speech and language therapist sat down,

0:24:180:24:20

'and she said Joss probably has something called Asperger's.'

0:24:200:24:25

And she said, "Well, you'll know because you're autistic as well."

0:24:250:24:28

And I was like, "No, no, I'm not. I'm not autistic."

0:24:280:24:33

She said, "You are autistic and you need to get checked now."

0:24:350:24:38

I had no idea what autism was.

0:24:400:24:43

For me, when I got the diagnosis, it made everything make sense.

0:24:430:24:47

With Joss, it made things easier.

0:24:490:24:52

All I knew was he was going to grow up knowing that he was just

0:24:560:24:59

great who he was and he was his own wee person.

0:24:590:25:02

I wasn't going to change him.

0:25:020:25:04

I wasn't going to force him to be something or someone he wasn't.

0:25:040:25:08

You experience the world differently.

0:25:110:25:13

I'm being social right now.

0:25:160:25:19

I'm conforming right now.

0:25:190:25:21

If you see me...

0:25:210:25:23

..at home or things like that, I might not look at you.

0:25:250:25:29

I might rock more.

0:25:290:25:31

Hand flapping, I still do,

0:25:310:25:32

or I walk round in tiny circles or my hands'll go...

0:25:320:25:36

Is that stress? Does it relieve the stress?

0:25:370:25:40

I think so. It seems to happen when I'm under stress,

0:25:400:25:43

so it must be doing something or my body wouldn't

0:25:430:25:46

naturally do it.

0:25:460:25:48

Repetitive and self-stimulatory behaviours are defining

0:25:520:25:56

characteristics of autism.

0:25:560:25:57

Whenever you look at what the goals of an ABA programme are, you'll see

0:25:590:26:03

things on there about lessening or eliminating repetitive behaviours.

0:26:030:26:07

These are things like hand flapping and watching your fingers -

0:26:080:26:12

the things that mark someone out and parents find them

0:26:120:26:15

embarrassing or strange.

0:26:150:26:17

And that's considered a perfectly good thing to use

0:26:170:26:20

ABA to get rid of.

0:26:200:26:21

On the other hand, if you talk to people with autism

0:26:230:26:25

you find out that these behaviours are actually functional.

0:26:250:26:28

They're things that allow them

0:26:280:26:29

to cope with sensory perceptual difficulties that they're having.

0:26:290:26:33

They allow them to cope with stress. The behaviours work.

0:26:330:26:36

Gunnar has now been working with Tobias for six months.

0:26:400:26:44

Hi, Tobias.

0:26:440:26:45

HE SPEAKS OWN LANGUAGE

0:26:450:26:47

This is an activity he doesn't learn anything from,

0:26:540:26:59

just the self-entertainment without any progress or development.

0:26:590:27:05

Other people might think that this is a necessary activity for a child,

0:27:050:27:09

so they leave them doing it.

0:27:090:27:12

The point is, having worked with a lot of kids,

0:27:120:27:14

I can't see it makes them happy.

0:27:140:27:16

I can't see it causes development,

0:27:160:27:19

and I see lots of motivation problems and learning problems.

0:27:190:27:26

SHE SPEAKS OWN LANGUAGE

0:27:260:27:28

Gunnar has trained the parents

0:27:350:27:37

so that they can work intensively with Tobias as his tutors.

0:27:370:27:41

SHE SPEAKS OWN LANGUAGE

0:27:410:27:43

Fantastic.

0:27:510:27:53

HE SPEAKS OWN LANGUAGE

0:27:560:27:59

It was fantastic.

0:27:590:28:01

He is receivable, for your instruction.

0:28:010:28:04

And your influence. He'll watch you, he watches you a lot.

0:28:040:28:08

Just a few times you say, "Look at me," and he looks at me immediately.

0:28:080:28:12

HE SPEAKS OWN LANGUAGE

0:28:120:28:15

You are not a happy parent of a child doing...all the day.

0:28:210:28:25

So, er, it's much better to work and see the progress.

0:28:270:28:31

Some days you go back, and I don't think that I smile every day,

0:28:310:28:36

but it's much better when we see we help him,

0:28:360:28:40

than see him being worse every day.

0:28:400:28:44

I try to learn parents to be focused on defining the behaviour as I do -

0:28:500:28:55

reasonable or unreasonable -

0:28:550:28:56

and if it's unreasonable behaviour, you should demand some other

0:28:560:29:00

behaviour from the child.

0:29:000:29:01

Some people might think that you're being unreasonable.

0:29:010:29:05

I don't think so. I think I'm quite reasonable.

0:29:050:29:09

The point is, he has to perform, he has to...

0:29:090:29:14

do something to gain,

0:29:140:29:17

to reinforce the wanted object.

0:29:170:29:20

And I don't care if that stresses him today,

0:29:200:29:23

because the goal is not today, the goal is many years ahead.

0:29:230:29:27

And if he cried towards me at the age of three-and-a-half year,

0:29:290:29:34

when he's six, that doesn't matter - he would never remember it even.

0:29:340:29:41

So, I don't really see the dilemma.

0:29:410:29:44

Look, we've got the snake.

0:29:470:29:49

Halfway through Jack's first term,

0:29:490:29:52

Lesley is ready to start tackling his food issues.

0:29:520:29:55

The whole food thing is a really difficult issue.

0:29:560:29:59

You can't force children to eat food against their will.

0:29:590:30:02

We wouldn't want to do that.

0:30:020:30:04

But sometimes you have to encourage children to do things

0:30:040:30:06

they don't want to do, in order to be able to move them on.

0:30:060:30:09

Here comes dinner.

0:30:090:30:10

It's a big, red lorry.

0:30:140:30:16

The first thing that we're doing is getting Jack used to

0:30:220:30:24

sitting at the table with food in front of him.

0:30:240:30:27

He needs to be able to tolerate the food being there without panicking.

0:30:270:30:32

Don't do that.

0:31:060:31:08

We have seen quite a few cases where children would only eat

0:31:140:31:17

orange food or only eat baby food.

0:31:170:31:20

I've left that there thinking he may have gone for that.

0:31:200:31:25

That's not going to happen in a month of Sundays.

0:31:250:31:29

You do have to consider he's a little child

0:31:320:31:35

and it's a person who doesn't want to do something.

0:31:350:31:38

They're not just being difficult.

0:31:380:31:40

They may have sensitivities or feel or think things differently

0:31:400:31:43

to how you do.

0:31:430:31:45

But I don't think you can let that stop you trying to teach them

0:31:450:31:48

new skills.

0:31:480:31:49

I think you just have to be careful how you introduce it.

0:31:490:31:52

# Put your coat on

0:31:540:31:56

# Put your coat on

0:31:560:31:57

# And come along out to play

0:31:570:32:00

# Put your scarf on

0:32:010:32:03

# Put your scarf on

0:32:030:32:05

# Make yourself nice and cosy

0:32:050:32:08

# Put your boots on

0:32:080:32:10

# Put your boots on

0:32:100:32:12

# Now come along out to play. #

0:32:120:32:15

St Christopher's take a different approach to

0:32:160:32:19

children's issues with food.

0:32:190:32:21

Cameron is one of the few that refuses to eat anything.

0:32:210:32:29

He's never eaten a solid thing in his whole entire life.

0:32:290:32:32

So he has six milkshakes a day that bulk him up.

0:32:320:32:35

He will be given exactly the same as all the other children,

0:32:370:32:40

and then it's down to him to then make those choices

0:32:400:32:42

if he wants to put it to his mouth.

0:32:420:32:44

If you try and push the children too much,

0:32:450:32:47

you then lose that trust with them.

0:32:470:32:49

So we try and take steady steps with them to build that

0:32:490:32:53

trust and allow them to sort of make further progress like that.

0:32:530:32:56

And what will happen with someone like Cameron,

0:32:560:32:59

because I guess that can't carry on?

0:32:590:33:00

No, I mean, he's 11 years old now

0:33:000:33:03

and so Mum is discussing about medication,

0:33:030:33:06

anxiety medication and trying to reduce the anxieties around food.

0:33:060:33:10

Hopefully we'll be able to then take that window of opportunity to

0:33:100:33:15

make him feel comfortable enough to then try and eat solid food,

0:33:150:33:18

but it probably will end up being that he'll be tube-fed.

0:33:180:33:22

Treetops have been working with Jack on his food issues for

0:34:080:34:12

three weeks, but at home his eating has got worse.

0:34:120:34:15

Bye-bye.

0:34:150:34:17

He wouldn't even touch his custard last night.

0:34:170:34:20

He just tipped it over the side, as if, so, you know,

0:34:210:34:25

he couldn't then eat it.

0:34:250:34:27

So, have you spoken to the school about it?

0:34:290:34:32

Well, I didn't know what to do,

0:34:320:34:34

and they said about coming out and showing me what to do at home.

0:34:340:34:37

Because I did want to know.

0:34:370:34:39

But I just didn't quite realise, he's got to sit there

0:34:390:34:43

and he's not allowed to be sick,

0:34:430:34:45

and then if he's sick he doesn't get his custard as a reward.

0:34:450:34:50

-And what happened? Was he sick?

-Yes.

0:34:500:34:53

And the two times I tried to do it, he was just projectile vomiting.

0:34:540:35:00

You know, it wasn't good. I just don't know the answer.

0:35:010:35:07

There's no way you'd have dealt with it, Mum.

0:35:070:35:09

No. Just don't know what to think,

0:35:090:35:13

but he won't eat something so you'll give him, like,

0:35:130:35:17

chocolate custard and he'll eat that, and then he'll decide what

0:35:170:35:22

else he wants to eat and he's going, "Lovely, that's what I want."

0:35:220:35:25

So then when you try him with ordinary food, he's not going to -

0:35:250:35:30

he's trying you out.

0:35:300:35:31

Well, they said he's doing OK at school,

0:35:310:35:34

but I do need to go in and see that for myself to decide

0:35:340:35:37

whether I will continue with the programme

0:35:370:35:40

because I can't do it if it's the way it was here,

0:35:400:35:44

Friday, I just can't do it.

0:35:440:35:47

Come on!

0:35:480:35:49

-Bye-bye.

-Good boy!

0:35:510:35:54

Say bye-bye, Nana.

0:35:550:35:57

Bye-bye, Nana.

0:35:590:36:01

Nan's gone. Going to come back in now?

0:36:020:36:06

Going to come back in? With me. Going to come back in?

0:36:060:36:13

Come in. Come in, Jack.

0:36:130:36:15

Quickly. Quickly.

0:36:170:36:20

Quickly!

0:36:200:36:22

HE LAUGHS

0:36:330:36:35

Come on.

0:36:350:36:36

HE CRIES

0:36:360:36:37

Oh!

0:36:410:36:42

HE CRIES HARDER

0:36:420:36:45

HE CRIES

0:36:560:36:58

Where's your pass?

0:37:050:37:07

OK, give us a cuddle.

0:37:090:37:10

HE CRIES

0:37:120:37:14

Oh!

0:37:210:37:23

HE CRIES

0:37:240:37:27

HE CRIES HARDER

0:37:320:37:35

Woh-ah-ah.

0:37:510:37:54

Ah, hey.

0:37:560:38:00

-Hello, June.

-Hi, Patience, how are you?

0:38:010:38:06

June works as a volunteer adviser for parents of children with

0:38:060:38:09

special educational needs.

0:38:090:38:11

She has stayed in touch with Patience since Matthew

0:38:110:38:14

and Reuben were at school together.

0:38:140:38:16

Yes, you've grown.

0:38:160:38:18

Wah, oh, ah, ha.

0:38:180:38:20

Hello.

0:38:200:38:22

Sorry.

0:38:220:38:23

Hi.

0:38:230:38:25

-Reuben is 13 now?

-Yes.

0:38:270:38:29

And Matthew's near to 15. So it's only a two years' gap.

0:38:290:38:33

But you know, when Matthew started, as you say, he could count to 20.

0:38:330:38:37

Reuben didn't, couldn't. He didn't know his numbers.

0:38:370:38:42

Maybe one, two maybe.

0:38:420:38:44

Matthew knew more than that when he started, yes.

0:38:440:38:46

Yeah. Reuben hadn't. He had maybe five words.

0:38:460:38:49

He'd learned fantastically.

0:38:490:38:52

As you see, you know, he can read, he can write.

0:38:520:38:55

You see, this is one of my worries why I don't want him

0:38:550:38:58

to go to any more special schools, whereby he picks up more

0:38:580:39:01

negative behaviour and then, you know, he will be very unmanageable.

0:39:010:39:08

So that's why I said I feel a little bit...

0:39:080:39:10

But you, no, you've got him at home, but he's not...

0:39:100:39:13

because you don't have the money to have tutors in, he's doing nothing.

0:39:130:39:17

He's un...you know, he is just bored!

0:39:170:39:21

We do work. There are these two things. Some cutting.

0:39:210:39:25

We do coupons.

0:39:250:39:27

But, Patience, it's a lot of work because, you know,

0:39:270:39:30

he needs to be stimulated six hours a day.

0:39:300:39:33

If you imagine a child at school, you can't manage at home, because

0:39:330:39:37

at the moment you don't have the funding, you need to push that side.

0:39:370:39:41

You do.

0:39:410:39:44

You obviously work with loads of parents,

0:39:440:39:46

and I wonder how unusual Patience's experience is?

0:39:460:39:50

It's not unusual at all. It's becoming more frequent.

0:39:500:39:58

And there are lots of families around the country doing home

0:39:580:40:01

programmes and funding it themselves,

0:40:010:40:03

so you don't hear of them at all,

0:40:030:40:05

but they are, they're there.

0:40:050:40:07

It's this kind of hidden community of parents doing ABA at home.

0:40:070:40:12

Gunnar considers one of his most successful home programmes to

0:40:180:40:21

have been with a family who live in Stockholm.

0:40:210:40:25

We're going to say hello to Richard, a Swedish boy, he's 16.

0:40:250:40:30

He got an autism diagnosis at around age three.

0:40:300:40:35

The official system told the mum and dad not to be too optimistic,

0:40:350:40:39

and they should prepare themselves for sending Richard

0:40:390:40:43

to a special school,

0:40:430:40:45

but the parents thought otherwise.

0:40:450:40:47

Richard plays badminton for the Swedish national junior team.

0:41:030:41:07

The parents contacted me

0:41:180:41:20

and we started development training when he was three and a half.

0:41:200:41:23

It was a struggle.

0:41:230:41:25

Most of all, it was a struggle for the parents,

0:41:250:41:28

not always agreeing on how to do things.

0:41:280:41:32

THEY SPEAK IN SWEDISH

0:41:370:41:40

THEY LAUGH

0:43:390:43:40

So this is his birthday, is it?

0:43:490:43:51

This is his two-year birthday.

0:43:510:43:54

HE LAUGHS

0:44:090:44:11

THEY LAUGH

0:44:130:44:15

This is in November, he was born in April... Three and a half.

0:44:380:44:41

So at this point speech hadn't really started?

0:44:410:44:45

No, no, no, not at all.

0:44:450:44:47

OK, OK... Shh!

0:44:480:44:52

SHE SPEAKS IN SWEDISH

0:45:000:45:02

HE CRIES

0:45:170:45:19

THEY SPEAK IN SWEDISH

0:45:420:45:44

He doesn't want to watch more.

0:45:470:45:49

He's a really happy child right now,

0:45:510:45:54

and it's great that you have done this,

0:45:540:45:56

but it's, yeah, hard to see.

0:45:560:45:59

Yeah, it is very surprising.

0:45:590:46:01

And I never think it was so hard.

0:46:020:46:06

And I think I was just sick, but not so sick.

0:46:060:46:11

He had a condition that tells him to try to avoid demanding situations.

0:46:140:46:22

It was very difficult to find anything you could use

0:46:220:46:26

as a proper reinforcement.

0:46:260:46:28

There was a couple of things he could like,

0:46:280:46:30

but nothing he was willing to climb Mount Everest to get.

0:46:300:46:35

You see what I mean? So we had to be firm.

0:46:350:46:38

If not, he wouldn't take us seriously.

0:46:380:46:40

And seeing the result today,

0:46:400:46:42

I don't personally feel very, very bad about it.

0:46:420:46:44

Listening to Richard telling that he really doesn't recall

0:46:440:46:47

anything from that period.

0:46:470:46:50

So it's a little bit... In a hospital, when we get hurt,

0:46:500:46:54

it looks like a mess.

0:46:540:46:56

There's blood all over,

0:46:560:46:58

it's sweat and tears, it's sadness,

0:46:580:47:01

and then they fix you.

0:47:010:47:03

-Where's it gone?

-Have we got our bus with the doors today?

0:47:270:47:30

Shall we shut them?

0:47:300:47:33

I can't believe him. Why did he give me all that grief?

0:47:330:47:37

-Yes, good boy.

-Clever boy.

0:47:370:47:41

You know, I've been reading in the book that he's not

0:47:410:47:44

been sick for the past two days,

0:47:440:47:47

so obviously it is me.

0:47:470:47:51

It's got to be me, ain't it?

0:47:510:47:52

It's going to be a long process,

0:47:520:47:55

and that emotional attachment makes it so much harder,

0:47:550:47:58

cos you don't want to see him upset and distressed, you know,

0:47:580:48:02

and he's not used to you doing things like that with him.

0:48:020:48:06

So it's almost he's got a whole new learning process.

0:48:060:48:09

Where's that truck? Who's that?

0:48:090:48:12

SHE LAUGHS Hello!

0:48:120:48:14

"What are you doing here, Mummy? What's Mummy doing here?"

0:48:140:48:18

-What's she doing? Did you come to speak to Michaela? Wow!

-Mummy!

0:48:190:48:25

Have you been eating food? You been eating food?

0:48:270:48:31

I think we might get tears.

0:48:310:48:33

Yeah. Just go and sit over there with Michaela.

0:48:330:48:36

We're nearly finished now, ain't we? Where's the last one?

0:48:360:48:39

Where's the truck gone?

0:48:390:48:42

Where's the truck gone?

0:48:440:48:46

People have to think very carefully about exactly what compliance

0:48:480:48:52

is teaching their children,

0:48:520:48:54

because you're giving way to an adult.

0:48:540:48:58

You are complying with an adult, all the time,

0:48:580:49:00

and that can leave you extremely vulnerable, extremely vulnerable.

0:49:000:49:04

Yeah, we're done for today.

0:49:040:49:06

So he's tried two bits of everything and no...no gag at all.

0:49:060:49:12

Come here, you cuddle Mummy.

0:49:120:49:14

Aw!

0:49:140:49:17

I think the argument is, it's the child's right to say no.

0:49:170:49:21

But we believe that it's the child's right to be able to experience

0:49:210:49:24

other things, and they don't really know what they're saying no to

0:49:240:49:27

because they've got a barrier

0:49:270:49:29

so it's about removing those barriers and retraining their brain

0:49:290:49:33

so that actually they can access a whole lot of other things

0:49:330:49:36

and enjoy a much fuller life.

0:49:360:49:38

Although I wasn't diagnosed as a child,

0:49:540:49:58

it was obvious that I was different.

0:49:580:50:01

You know, there's no blame, there's no hard feelings,

0:50:040:50:09

but this drive to make me

0:50:090:50:14

look, appear, behave, think, feel...

0:50:140:50:17

..experience everything in a normal way

0:50:190:50:25

was...

0:50:250:50:26

it-it broke me inside.

0:50:260:50:30

It is a form of cruelty to deny a person who they are.

0:50:320:50:36

Erm...

0:50:360:50:38

There was no cruel intent there, the best interest was

0:50:380:50:42

always there, but it wasn't right for me, and I couldn't put

0:50:420:50:49

Joss into a system or a programme

0:50:490:50:54

that wasn't designed for him.

0:50:540:50:56

I couldn't rob Joss of who he was, of his soul, of his essence.

0:50:570:51:04

And if part of that was autistic, then fair enough.

0:51:040:51:09

It's not necessarily a bad way of living.

0:51:090:51:13

But there's other people who are profoundly autistic

0:51:130:51:18

and I can't... I can't speak for them.

0:51:180:51:21

# Happy birthday to you

0:51:210:51:25

# Happy birthday to you

0:51:250:51:29

# Happy birthday, dear Jeremiah

0:51:290:51:35

# Happy birthday to you. #

0:51:350:51:39

Ready, steady...

0:51:390:51:42

THEY CHEER

0:51:420:51:44

Some people suggest the goal of ABA is compliance with social norms,

0:51:450:51:50

with rules, and that is in fact true.

0:51:500:51:54

But everybody expects that from their children. Nobody wants chaos.

0:51:540:51:58

We are who we are, due to some genetic endowment.

0:51:580:52:03

But most of who we are is in fact the result of a set

0:52:030:52:08

of environmental events completely out of our control

0:52:080:52:11

and unwittingly applied by people around us.

0:52:110:52:13

But the fact that we're unaware of it doesn't make it

0:52:130:52:16

any less effective.

0:52:160:52:18

Dr Vince Carbone is a leading ABA practitioner

0:52:180:52:21

and researcher from New York.

0:52:210:52:23

He constructed the programme that Treetops follows

0:52:230:52:26

and visits the school twice a year.

0:52:260:52:28

-Who's that?

-This is Jack.

0:52:280:52:31

Jack, huh?

0:52:310:52:33

That was funny, huh, Jack?

0:52:350:52:37

Look at him sign.

0:52:370:52:41

In a book!

0:52:410:52:43

Nice, Jack!

0:52:430:52:45

That's great.

0:52:470:52:49

I think it's important that people pay attention to what people

0:52:490:52:53

with autism say about ABA therapy.

0:52:530:52:57

But we're not trying to change the soul or...

0:52:570:53:00

the essence of the person,

0:53:000:53:03

what we're attempting to do is change their behaviour patterns so

0:53:030:53:06

that they garner more reinforcement during their life than they do

0:53:060:53:09

negative attention and punishment from the social community.

0:53:090:53:12

And...a biscuit. Well done!

0:53:120:53:16

Hey, do some exercise or else you'll freeze.

0:53:250:53:29

Matt, go on, go on the bike.

0:53:290:53:31

I'm not regretting what I did

0:53:340:53:37

because any mother in my position would do the same.

0:53:370:53:40

It breaks my heart to watch him growing up, you know,

0:53:530:53:58

not getting any better.

0:53:580:54:00

The love for my child, is it right?

0:54:100:54:12

Nothing else. It's that love that I have for my son that drives me

0:54:120:54:17

to do anything, anything that it takes.

0:54:170:54:20

If I don't fight for him, nobody does.

0:54:230:54:26

Thank you. Shall we go home?

0:54:340:54:37

Matthew, come on.

0:54:420:54:44

It's getting dark, look. Night-time.

0:54:440:54:48

Night-time.

0:54:480:54:49

Listen, five, four,

0:54:510:54:55

three, two, one! Home time.

0:54:550:55:01

Home time.

0:55:010:55:03

Going home, going home...

0:55:030:55:06

-You want me to leave you?

-Yeah.

0:55:060:55:08

I'm going now, Matt. I'm going. Bye-bye.

0:55:080:55:12

OK, I'm going, bye-bye!

0:55:120:55:14

I'm going, are you coming?

0:55:160:55:18

Are you coming? Come on!

0:55:180:55:20

Let's go.

0:55:220:55:23

Come on.

0:55:240:55:25

He never used to look at me.

0:55:430:55:45

Even if you called for him, he never used to come.

0:55:450:55:48

Things changed for me.

0:55:490:55:50

He does come to me now.

0:55:500:55:52

I'm much happier than what I was.

0:55:520:55:56

That stress level is, you know, reduced enormously.

0:55:560:56:00

BOY LAUGHS

0:56:010:56:03

You can have it later, OK?

0:56:060:56:07

The changes are always going to be slow. There is no quick fix.

0:56:090:56:14

But the changes are very positive, and if he is going to

0:56:140:56:17

a mainstream school, I don't think it would have happened.

0:56:170:56:21

Do you feel that you're just able to communicate better with him?

0:56:220:56:28

Yeah.

0:56:280:56:29

Jeremiah, how do you say sweeties? How do you say crisps?

0:56:290:56:34

Crisps, good boy.

0:56:340:56:35

How you say raisins?

0:56:350:56:37

Raisins.

0:56:370:56:38

How do you say biscuits? Biscuits. How do you say bubbles?

0:56:380:56:41

Bubbles. How do you say up? Up.

0:56:410:56:45

Good boy. Show his nose, eyes.

0:56:460:56:50

Touch your nose. Touch your nose.

0:56:500:56:53

Touch your nose.

0:56:530:56:55

Look. Touch your head. Head.

0:56:550:56:58

Touch your head. Good! That's a good boy!

0:56:580:57:01

Spin!

0:57:010:57:02

Spin!

0:57:030:57:05

There is this fine line about knowing when to allow children to,

0:57:060:57:10

kind of, step out of their comfort zone and when not to.

0:57:100:57:13

And this is, I think, the case for all children,

0:57:130:57:16

but it's particularly difficult for children with autism,

0:57:160:57:18

who are often very set in their ways.

0:57:180:57:21

Can they be pushed at this moment in time in order to experience

0:57:210:57:24

something new, or should we just, kind of, hold back?

0:57:240:57:27

And parents and teachers are making these really quite subtle,

0:57:270:57:30

ethical decisions all the time.

0:57:300:57:32

Yeah, I know. It'll be here in a minute.

0:57:350:57:38

Dinner come in a minute.

0:57:380:57:40

We'll watch the children first. Yeah?

0:57:400:57:44

Look. Look, Jack.

0:57:440:57:46

Wow!

0:57:470:57:49

Yeah, Mummy's going to cut it up for you.

0:57:500:57:54

There you go.

0:57:540:57:55

Look at him. I never thought this day would come.

0:58:050:58:08

Never. Nothing makes him sick any more.

0:58:080:58:11

Oh, it's just absolutely fantastic.

0:58:110:58:15

Documentary which explores the controversy around ABA (Applied Behaviour Analysis), an intensive intervention used to treat autism. Parents who want ABA for their children passionately believe that it is the best way to teach a child new skills and to help them function in mainstream society, but critics of ABA argue that it is dehumanising and abusive to try to eliminate autistic behaviour.

The film follows three-year-old Jack and four-year-old Jeremiah through their first term at Treetops School in Essex - the only state school in the UK which offers a full ABA programme. Neither boy has any language, Jeremiah finds it hard to engage with the world around him and Jack has severe issues with food. Both their parents have high hopes of the 'tough love' support that Treetops offers, but will struggle with their child's progress.

We also meet Gunnar Frederiksen, a passionate and charismatic ABA consultant who works with families all over Europe. His view of autism - that it is a condition that can be cured and that families must work with their child as intensively and as early as possible if they want to take the child 'out of the condition' - is at odds with the way that many view autism today.

Gunnar is working with three-year-old Tobias in Norway and has trained the parents so that they can work with him at home as his ABA tutors. He also introduces us to Richard, a 16-year-old from Sweden who was diagnosed with autism at the age of three and whose parents were told that he would be unlikely ever to speak. Today, Richard is 'indistinguishable from his peers' and plays badminton for the Swedish national team. In an emotional scene, Richard and his family look back at video recordings of the early ABA treatment and we are confronted both by the harshness of the method and the result of the intervention.

These and other stories are intercut with the views and experiences from those who oppose ABA and who argue that at the heart of ABA is a drive to make children with autism as normal as possible, rather than accepting and celebrating their difference. Lee, an autistic mother of a son who has Aspergers, describes how the drive to make her behave and act like a 'normal' child broke her, and how she was determined to accept her son for who he was.

The question of how far we accept autistic difference and how much should we push people with autism to fit into society's norms raises wider questions that affect us all - how do we achieve compliance in our children, how much should we expect children to conform and how far should parents push children to fit in with their own expectations?


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