Autism: Challenging Behaviour


Autism: Challenging Behaviour

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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

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

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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

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