Autism Growing Children

As a psychologist, I am fascinated by how the brain develops

when children grow from babies into adults,

and why sometimes, things don't follow the typical pattern -

when they lack the usual social skills,

when they struggle with learning,

and when their anxieties mean

they can't deal with the daily pressures of the world around them.

Over the last 50 years,

neuroscience has begun to unlock a new understanding

of how the brain works and what happens when it develops differently.

We don't know where we're going with Zaine and how to support him

or what to do to help his future.

We can run away or we can fight.

Some children with autism are fighting for their lives.

In this film, I want to explore how growing children

are affected by the common developmental disorder autism,

through the eyes of children and families affected by it...

There's just absolutely no emotion whatsoever.

She's just staring right at you.

This is exactly what makes these studies so powerful,

that it's sort of this natural history of the child that we're following.

..to see what they can tell us about how our brains

process all the information from the world around us.

Remember Mummy loves you.

This programme contains strong language.

We are all social animals.

In our hectic, busy world, we need to share, negotiate and cooperate,

make and keep appointments, control our desires

and respond to familiar and unfamiliar people.

If we didn't, there'd be chaos.

Our brains are constantly monitoring the social situations

that we find ourselves in,

attempting to mind-read the people around us

and to help us to respond appropriately.

These social skills are partly hard-wired from birth

and partly learnt in childhood

and they are absolutely crucial to the world in which we live.

But there is a group of people for whom social interaction

is not necessarily hard-wired from birth or easily learnt in childhood

and, for some, remains completely absent.

HE SCREAMS

Tony Miller was diagnosed with severe autism

at the age of 15 months.

He is now 15 and lives at home with his mother, Lainey.

I mean, perhaps it's best to take it

right back to the beginning, you know,

and for you to tell me a little bit about how he was as a baby.

When did you start to notice

that maybe his development wasn't progressing in the way you expected?

Well, Tony was my third child, um...

and a very traumatic birth, a long labour,

roughly around about the seventh, eighth month mark,

I knew that something wasn't quite developing.

He would interact, he would smile and play as a baby would,

-but if you gave him toys, whereas a baby will explore...

-Yes.

..Tony didn't, he would just look at them.

And I was having to put his hand on and show him what to do.

As a child psychologist, I use key developmental milestones

in order to judge any baby's progress in its language,

physical development and social and emotional behaviour.

A first warning sign for autism can be when children like Tony

fail to reach some of these key milestones.

A crucial one is when a baby makes eye contact with its mother,

an early sign of typical socialisation.

Around about the 12, 13, 14-month mark,

I lost the eye contact and it seemed to happen overnight.

I was feeding him breakfast one morning

-and he was looking everywhere but at me.

-And it had gone.

It had gone.

We had all of the baby things but, sort of from the sixth month on,

I started to lose bits... bit by bit of those things.

HE SCREAMS

And you, you found yourself having to...?

HE SCREAMS

'Autism is a lifelong condition

'affecting how the brain processes information.

'It's now thought to affect at least 1% of children in the UK.'

Four times as many boys as girls are diagnosed with autism.

Its causes are not fully understood.

Numerous studies suggest that genes play a significant part,

but environmental factors seem to play a role too.

Symptoms fall into three main clusters -

problems with social interaction,

with communication and repetitive activities and interests.

How would you explain what autism is?

Autism is a disability,

a developmental disability that affects the way a person thinks,

communicates and interacts with people.

And Tony suffers from the severe end of all of that.

So how Tony thinks and how we think,

how he sees his perception of the world

is totally, totally different to what you and I would see.

And his interaction is only on his terms.

At the age of five,

when most children are expected to be almost fluent in their speech,

Tony had almost no spoken words,

another warning sign for autism.

He still has little spoken language.

So Lainey has had to learn a new way to communicate with her son.

He's given a picture of a juice and you have the juice there.

So it's getting him to focus,

and he gives you the picture and you give him the juice.

So he understands, if I give you that, then I get that.

And then you would advance that to biscuits, you would advance that to toys,

you would advance that to food and, and eventually, you know,

what we, I would do with Tony is go,

"I want juice, I want... Say it. Say it, say it. Juice, juice."

And so, that symbol could then be removed

and he would then be saying the word juice as he does now.

So he'd put the words in, he'd use his language,

-which is what you're ultimately looking for, isn't it?

-Yeah.

-That exchange of words.

-That's it.

-Can I just ask about the feelings ones?

-Yeah.

Cos how do you use those?

When he has a meltdown, you know, I will say, "Tony, tell me

"what you're feeling," and he'll tell me, "Angry, angry."

And then I'll say,

"What's made you angry, what's made you angry?"

But if we're out in the community, and he starts to get upset,

you know, and I...he can't say,

"It's because there's too many people, Mum."

At its most severe, autism can cause an extreme form of social isolation.

Today, Tony spends most of his waking hours

sat in front of his computer,

apparently oblivious to the people around him.

When he was little, he didn't like to be cuddled.

And I thought, "No, I'm not having this."

So I'd start off by tickling him and playing with him,

rough and tumble, and throwing him about, as you do with children,

and said, "You know what? That's fun," so we did that.

So now, I have taught him, I had to teach him something that is so natural,

"I want to hug you, Mum," but it's took years to get there.

Behavioural observations have always played an important role in autism research.

Now, technology is allowing scientists to investigate the link

between these unusual behaviours and processes in the brain.

'Psychologists at the University of Nottingham are trying to uncover

'why people like Tony appear to be so socially isolated.

'They want to understand how our brains work

'when confronted with social situations,

'how we understand the social cues we encounter every day.'

We're interested in two particular brain systems,

so if we look on the side in, um, intraparietal sulcus,

that's an area which we know from many studies it responds

when you see another person picking up objects,

interacting with objects,

that responded exactly the same

in the typical and the autistic participants.

But on the inside of the brain,

there's a region at the front called medial prefrontal cortex,

which, again, we know from other studies,

is much more involved in social interaction

and understanding other people's, beliefs, desires, motivations,

and that region was the one that was showing different responses

between the typical and the autistic participants.

'One of the tests they are using to help spot these differences

'involves both autistic and typical people viewing some short films

'whilst their eye movements are monitored

'to assess how they predict the actions they are watching.'

So what we're interested in

is whether your eyes are able to predict these unusual actions.

'The study is still under way, but initial results suggest

'that people with autism tend not to look to the face

'for information to help them predict actions.'

OK, and so, you've got my results.

I have got your results, if you would like to have a look.

'This latest eye-tracking technology is starting to give us real insight

'into how everyday social interactions

'rely on the processing of subtle cues by our brains.'

In terms of brain function, does it seem that people with autism

are having to call on different resources

to help them really understand and be in the world?

It's much harder work to deal with any kind of social situation

when you're not picking up the social cues,

and the thing that my research is particularly interested in is these non-verbal behaviours,

the unconscious things that people just don't realise are going on all of the time.

Autistic Spectrum Disorder - ASD, as it's known,

encompasses a range of severity and symptoms.

Tony has severe difficulties with social interaction,

with communication and repetitive behaviours.

He also has severe learning difficulties.

HE SCREAMS

So what's... What's he telling us at the moment?

What he's doing there is repeating videos,

because he watches Disney videos, It could be Winnie the Pooh,

his Barney, his Gummy Bears, his Sailor Moon, it's all Disney.

-Yes, yeah.

-He's repeating.

-Oh, OK.

He's reacting what he sees on the videos

and he'll get up and do all the dancing

like Barney does and the Teletubbies,

and then, whatever he is watching, he'll act it out.

So he's really in his own world.

Constantly, yeah, and he's oblivious,

he's just, he's happy and he's playing, he's noisy...

SHE CHUCKLES

One explanation for Tony's unusual interests

is that his brain processes information very differently to mine.

His narrow range of repetitive activities could be

because he struggles with the unpredictability of everyday life

and especially anything that alters his routine.

We know, because our imagination tells us,

I know I'm going to get up and have breakfast and I know what's going to happen to my day.

He has to be reassured, because he doesn't know what's going to happen.

Sometimes he, you know, it's unpredictable.

If we can let them know this is what's going to happen to your day,

this is what's going to happen to your life, your world,

this is what we need to do to prepare you, um...it's the knowing.

Good! Tastes good!

Children with autism's dislike of change in any aspect of their lives

can include their diet.

At the moment, the only food that Tony will eat is a particular type of pizza.

As a baby, I fed him everything, like we ate, he ate.

And as they get older, it's, "I don't like cabbage,"

same as, "I don't like broccoli,"

and they can tell you and you can encourage.

Tony couldn't communicate that. He would just refuse.

When Tony was a child,

any trip outside the home was almost impossible, even to the supermarket.

Any change in his routine would distress him.

But after a lot of careful work, Lainey has now accustomed Tony

to the regular family shopping trip.

Today... What are we doing today? Are we doing some shopping?

Doing some shopping?

OK, put those in the trolley for Mummy.

-Good boy, put them in the trolley. Well done.

-Waiting.

-Waiting, good boy. Come this side.

I like to keep him on this side so I can make sure he's OK. Good boy!

And he links up with you very well,

so there's something about having him right there.

Yes, I need to keep him close cos he can start to bounce around

-and he can be quite frightening for the children.

-Yeah, yeah, yeah.

And also, if, you know, if he's going to go into a meltdown...

I don't want him attacking members of the public, which he has done,

-and that could be quite difficult.

-Yeah.

You've been bringing him here for a number of years now.

-Yes, yeah.

-So he knows the routine, knows the drill.

Yeah, I have to really time it carefully what time I bring him.

Normally, I would bring him about eight o'clock in the morning, it's really quiet.

Sometimes, we've been here at half past six.

SHE CHUCKLES

Tony, can I have some Pepsi, please?

Please, help Mummy. Very heavy!

OK, put it in...the trolley!

On the yogurts!

THEY CHUCKLE

'Typical brains process and integrate the information we receive from all our senses

'to enable us to organise, prioritise and understand what is going on around us.

'But many people like Tony have difficulty doing this.

'So, for him, everyday life can be a confusing, frightening series of places, sights and sounds.'

He's quite... Yeah, give him my computer.

Yogurts. Get Tony some yogurts.

-Just a bit noisy here?

-Yeah.

-The fridges?

Yeah, this is where we, he will struggle here, it's the noise level.

Tony, do you want to pick some yogurts?

'Tony suffers from hypersensitivity to noise

'and other sensory experiences.

'So, for him, even the hum of a supermarket fridge can be overwhelming.'

Put them in. Well done!

But that very slight change in the noise really did affect him.

-Yes.

-Just coming round that corner, didn't it?

Mm. You could see it, you could see the, um...

-going for his hands covering up.

-Mm.

-His sensory overload is huge

and he really struggles with it at times, so...

Nearly finished, Tony.

He's telling me, "Waiting, waiting," which tells me,

that's the signal that, you know, "I'm coping, Mum, but not for much longer."

-Don't push it for much longer.

-Not for much longer.

At the University of Cardiff's School of Psychology,

scientists are in the middle of a two-year study

using the latest neuro-imaging technology

to uncover how the brain processes sensory information

and why the brains of people with autism do this differently.

Using a state-of-the-art brain scanner,

they are recording the magnetic fields produced by the brain activity

of both typical people and people with autism

when they are given different sorts of sensations.

So we're recording 275 separate traces

of what's going on in John's brain.

What we do is, we give a certain number of these stimuli

and then, at the end, John will come out

and we will continue testing him in different ways down in the MR.

But we'll take all this data

and, because we know exactly whenever John got those vibrations,

we can reconstruct how his brain responded.

The big response that you get from the area in the brain called the somatosensory cortex,

which is the first area

that picks up the sense of you being touched there,

happens in about 70 milliseconds.

And we build up, essentially, a group response between our autistic group

and our neuro-typical group

and we try and look for differences in there.

We're really interested in trying to get a better handle

on the neuro-biology. In other words, the brain correlates

of what's going wrong with these sensory symptoms in autism.

For some people, it might be loud sounds,

for other people, it might be bright lights.

'And more and more parents are reporting that, actually,

'these are the systems that they first notice with their children.

'That, actually, there's an overload of sensory information.

'That's right.'

If you have the bad communicative problems that we see in ASD,

the problem then is to actually explain why they're responding

because we don't actually know, or we don't have access

to other people's internal states.

I've got no idea really how you're feeling when you're looking at all this.

We assume that we feel the same.

This isn't particularly anxiety-generating for us.

But, you can imagine,

if you go into a place which has all these triggers

for a person on the spectrum,

it's going to be a horrific experience.

The one thing that parents do bring is the question about...

there's something, you know, WRONG with their child.

And actually, you know, lots of young children who do have an ASD presentation,

they're experiencing the world very differently to you and I,

and I think that's an important distinction to make.

No, I would completely agree, you've really hit the nail on the head.

It's the difference that we need to get across.

But it's also a feeling of understanding,

it's to try and get across that the reason that that person

is freaking out or going crazy in the supermarket

is not because they have problems that are behavioural in origin

-or, more than that, they're just badly behaved.

-Yeah.

They're reacting in a profoundly different way to those stimuli than we do.

'So one explanation for Tony's different behaviour

'could be that the constant noises and repetitive movements he makes

'are his attempt to block out all the heightened sensations of our world

'and replace them with his own.

'It could be his way to deal with stress and uncertainty.'

HE SCREAMS

Tony, Tony, hold Mummy's trolley, please. Thank you.

We're going to get Tony some juice.

Get his favourite...

Cranberry juice, his cranberry juice.

Oh, this is heavy, Mummy do that one, OK?

'Tony Miller is now 15.

'Like any teenager, he is also going through puberty,

'with all the usual hormonal changes.'

'He's actually getting to be quite stroppy.

'But along comes, with the stroppiness, comes that he has no boundaries,

'he doesn't understand these emotions.

'My other two children, if we'd have had a disagreement,

'as most teenagers, would walk out, slam the door,

'and go to the bedroom, "Bye, see you," you'll get over it.

'With Tony, it's completely different.

'The meltdown comes because he doesn't understand these emotions.

'And, in between all of that, he's 15, you've got the voice breaking,

'you know, you can't explain to him, your voice is going to break.

'And all as well, there's the sexuality bit comes into it as well.'

Thank you! Be careful with the...

-'He has a routine each evening?

-Yes.

'Same routine every evening. He comes in from school

'and the computer is the first thing that goes on.

-'And then bed?

-Bed at nine.

'Er...nine to quarter past,

'and that's because I'm worn out by then. Because most 15 year olds'

don't go to bed at quarter past nine,

but you cannot tolerate... If I had this all the time,

I won't hear the TV and we won't get any time out.

-So is bed sleep?

-Bed, he goes into bed, he's real...

It's took many years to get him into a lovely routine.

If we're really lucky, he may sleep till six or seven.

But that is a one-off and it doesn't happen that often.

Tony will always have autism and, in his case,

he will always need full-time care.

For the last 15 years,

Lainey has looked after him almost singlehandedly.

At times, it is a 24-hour-a-day job.

She now feels she may have to consider Tony moving into full-time residential care.

-Tony's always been a biter.

-Right.

OK? And it's well documented -

he's bit many school staff, children and support workers.

You know, when he becomes frustrated,

as long as you can keep the anxiety levels low

and nothing upsets the routine,

we can keep the behaviour down.

It doesn't... I mean, the potential and the risk is always there.

Love you! Night-night!

Good night.

Cheese!

UPBEAT MUSIC

The autistic spectrum encompasses a wide range of symptoms and severity.

In a different area of the spectrum

are people with well-developed cognitive and language skills,

but who can still struggle with the complexities of social situations.

Michael Barton is 19

and a 2nd-year Physics student at the University of Surrey.

Well, I think university has been particularly good for me,

because it's allowed me to focus on all of my strengths.

At GCSE, I particularly know English was difficult.

An example of which, I was given an exam paper

and a question was to "discuss the humour in this passage."

-Obviously, I didn't find it funny, so I wrote, "There isn't any."

-Right.

Well, now I know that that's not the correct answer,

and I should have written a five-page essay or something.

Because of Michael's autism,

when he's confronted with social information,

his brain works differently to mine.

He struggles in social situations

to understand other people's thoughts, feelings and emotions.

What's really interesting to me is to think about

what the differences might be between you and I.

You know, how you see the world compared to me.

Can you explain a little bit of that to me?

Well, people on the autistic spectrum

tend to think very logically and analytically about things.

And I like to think of things in black and white, as the saying goes.

And it's... I think it's a saying, because I'm not actually colour blind.

HE LAUGHS

Yeah, definitely a saying.

-Yeah.

-And what does that mean, sort of logically,

can you give me some examples?

Well, a good example is the fact that I study physics

because I have a very mathematical mind,

and I'm very good at mental addition, for example.

But I struggled at English GCSE

and I found it very difficult

to socialise with people when I was younger.

At the Institute of Psychiatry at King's College, London,

Dr Francesca Happe is an expert on people with autism.

..Saying hello, letting him in...

'So one of the things that autism is really teaching us

'is that social intelligence, if you want to call it that,'

and intellectual ability are very different things.

And you can have an individual who is absolutely brilliant

in terms of their intellect,

in terms of their ability to understand the non-social world,

but socially, is so handicapped, so limited, and has to, as you say,

work so hard to manage even a little bit of neuro-typical life.

It's as if you were living in a completely different country

where you don't speak the language

and all the time, you're struggling to read the signs to know how you should behave,

to try and interpret what people are saying.

To better understand how differently Michael might process a typical social situation,

I wanted to try my own experiment.

'I love art and, in particular, portraiture.

'As a psychologist, I am fascinated how an artist

'can capture someone's character in a painting,

'to convey the story of their lives in an instant.

'I wanted to show Michael my favourite painting

'and see how it affected him, if he saw the same things as I did.

'I couldn't quite believe the face,

'this little girl that was looking out at me.

'I suppose the fact that I am working so often with children and their families,

'I am always looking for the emotional content

'in whatever the situation is.

'But I think that's something that speaks to me in her, in the eyes,

'in the way that she's looking at me.

'Because that's what most people are like, we're sociable beings.

'And even though she's standing there on her own,'

it feels like you could strike up a conversation with her

and that her emotions would become more obvious.

'Obviously, I see the girl just staring at us.

'It's quite a prominent, blank kind of stare.

'There's just absolutely no emotion whatsoever,

'she's just staring right at you.'

Any thoughts that she might have?

I mean, does it say anything to you in that sense?

Um... No, really. It just seems like a blank face just looking at me.

'I found Michael's reaction to the painting quite interesting,'

that actually, he wasn't drawn in the same way as I was to the face,

to find something that spoke to me.

I think that most people do try and put a story

to whatever they're seeing, whatever they're doing.

They try to make it make sense to them.

So to not have that, to have the absence of that,

is quite a curious thing for me,

because it's not the way in which I ever think.

You know, I'm always thinking about

what might be in somebody else's mind.

'Michael doesn't seek complicated motivations or intentions the way I do.

'He can't read the emotions that might be conveyed

'by the girl in the painting.

'His brain processes that social information differently.

'Difficulty understanding other people's minds

'might also explain why people with autism

'struggle with the complexities of the English language.

'Michael has just published a book to explain idioms and metaphors

'to other people with autism.'

Here we have my book, 'It's Raining Cats And Dogs',

written and illustrated by me.

And I think we'll go with this first example -

it's raining cats and dogs, which is an example of a classic idiom.

You cannot possibly get any meaning from the actual expression itself.

Have you got a favourite?

Well, I like quite a few of them, but I particularly like this one -

you're pulling my leg.

Because, obviously, when you say, "You're pulling my leg,"

you're joking about something.

However, this wasn't how I thought of it, and I thought,

"Well, I wouldn't really want someone to be pulling my leg

"if they were joking about something."

-It wouldn't feel like a joke?

-No.

But how important was it to sort of do that translation visually,

you know, to put something together?

-I think it was extremely important because most people on the spectrum are visual learners.

-Yeah.

-And, therefore, they can use the picture to help interpret the phrase.

-Mm.

I think, when talking to people on the spectrum,

it's very important to say exactly what you mean

so that they understand it.

I know it doesn't sound like much, but it can make a huge difference.

I know, it sounds to me as if you've got quite a sort of positive take

on, you know, the sort of person that you are.

Well, I've always thought that having a diagnosis was a positive thing.

I've always been encouraged to go out there and do something about my weaknesses

so that they may even become my strengths some day.

And, as I've shown with my book,

I'm an international author at the age of 19,

despite really struggling with my English GSCE.

I bet my English teacher would never have dreamed of that.

THEY LAUGH

So far, we've met people from different areas of the spectrum.

Both have wildly different symptoms, but share common features.

For instance, that their brains process social information differently.

Although autism is incurable, there are many therapies that can help,

and it is likely the earlier the intervention, the better.

As autism cannot yet be diagnosed by a biological test,

diagnosis is a complex and protracted process of behavioural observation.

On the surface, a child may appear to be acting like any other

so often has to be observed over a number of months, years even,

before a reliable assessment can be made.

For families, this can be a very traumatic process.

Mandy and Jason Clarke, in Leicester, have two sons.

Jake, aged six, and Zaine, aged four-and-a-half.

Jake was diagnosed with autism at age three.

Take me back a little bit, take me back to the beginning with Jake.

What are your earliest memories of him as a baby?

14, 15 months, it was really clear,

because, at first, he would point at things, but say, "Dat, dat,"

not build the sentences on words.

He said, "Dat."

Um...but then, things quite rapidly... He regressed, didn't he?

And he wouldn't sleep in his own room.

We thought maybe the shadows from toys, you'd put little night lights there

and all the typical things - the singing, changing bottoms,

nothing worked and, like, he would just scream, scream, scream and not sleep.

And I mean not sleep.

-He'd doze through the night.

-So he'd catnap, almost.

-Yes.

-Right.

And that was the biggest thing, knowing something wasn't...

could be affecting his behaviour during the day,

so that's why we didn't do anything, take him to the GP, for instance,

because we thought, "Well, maybe that's affecting

"why he doesn't want to go out, doesn't want to do anything."

'So you were trying to make sense of his behaviour.

'So he wasn't sleeping very well at night

'and that might explain his behaviour during the day.

'But it sounds as if he was a boy'

who was communicating in his own way

and initially, that didn't alert you to feeling concerned?

No, I thought he was just different, doing things differently.

You know, you can't compare each child you've had.

No, because they're all individuals,

so we thought, maybe he's just doing things his own way.

Fuck you!

Jake, that's inappropriate, sweetheart.

Unlike Tony Miller, Jake is in a mainstream primary school.

His form of autism means he can function in general society,

but it is a huge strain on both him and his family.

Think of a child with autism in a mainstream school

and the teacher's saying, "John, look at me when I'm talking to you!"

And the poor child, now they have to look at this face,

try and interpret what the hell all this information in the face is,

as well as listening to the intonation and the actual words

and the fact that neuro-typicals don't say what they mean,

so she's going to say, you know, "hop to it" or "lend me a hand,"

or so many things that literally don't make any sense.

A common symptom amongst children with autism

can be sudden mood swings, bursts of extreme aggression.

'And for a child in a mainstream school,

frustration could well be made worse by having to act "normal."

It does seem to be a real sense of their frustration that,

you know, almost as if they're in a glass box

and then they can't let you know what's going on.

So I think that the anger and frustration in autism

come about, of course, from lack of understanding on both sides.

You can see a problem with translation.

Er...they can't read our minds,

but we're also having difficulty seeing how THEY view the world.

And that frustration that builds up,

often from problems of communication

and, of course, the anxiety and the frustration go hand in hand.

When we're really frightened, you know, we can run away or we can fight.

And some children with autism are fighting for their lives.

And, of course, that's just layering upon layering their frustration.

Yeah, and what happens often is that the poor families get it,

because the child has been maybe at school

and they've been keeping a lid on their behaviour

and they've managed to do that act of acting neuro-typical

and it's cost them hard,

they come in through the door and THEN they explode

and the mum gets it all.

I don't want to take my shoes off!

-Well, you need to take your shoes off.

-Fuck off!

-Now, stop swearing.

-Aaah!

-Why can't you take your shoes off?

I don't want to!

Well, I'll help you. Now, there's no need for that.

Jake, get your trousers off.

Jake, can you...?

'When he overloads and it all gets too much,'

and he'll start lashing out and throwing, screaming and shouting,

'just trying to make sense of it all...'

Are you going to get changed, Jake?

-Are you going to get changed?

-Fuck off!

-Stop swearing.

Fuck off, fuck off, fuck off!

That's the difficult bit, to try and hold it together for the rest of the family.

Jake, Jake, Jake!

Jake! Jake, let go! Jake!

SHE MOANS

Jake, sit down.

Sit down, Jake.

Listen...

'Autism is not an excuse for bad behaviour, you know.

'We're trying to say that you need to control, we all have to control out temper.

'We could all put our fists through a wall from time to time,'

but, you know, it's how, when and where.

I fuckin' hate it!

HE SCREAMS

Can you slow him down though?

Do you think he knows that you're trying to understand?

'More so.

'We talk to him, make things simplistic,

'but he knows everything that's going on

'so he's not wound up about them or stressed out.

'It's a strange area when your son said to you,'

"Well, what's going to happen to me when you die?"

So I said to Jake, "Well, we have a lovely family."

"OK, then." But no emotion, after anything else.

I said, "But I'm going to be here for a long time. So that's OK."

But there's no...real feeling.

Owing to the genes they share,

it's now generally accepted that the brothers and sisters of children with autism

have a higher risk of having the condition themselves,

possibly as high as 18%.

Mandy and Jason are now worried that Jake's younger brother Zaine

is also exhibiting distressing symptoms.

Five minutes.

No, this is not our room.

Zaine has just moved from nursery to a mainstream primary school.

According to Mandy, every day, he is getting more and more anxious

because he has to cope with interacting with lots of new children.

-Are you looking forward to school today? Yeah!

-No!

No? Oh, why's that?

Tell me why you don't like school!

You can't do with all the school. OK.

Do you?

What do they say to you?

You don't like the people. OK, OK.

Don't get upset. Listen. Calm down, listen.

The people want to be your friends.

-You're sure about that?

-Yes.

Have you thought about going up to them and saying, "Hi! Can I play?"

You don't think of saying that?

You like what?

Oh, why don't you say to the kids, Zaine,

"Can I play? Can I play?"

So tell me about Zaine

and when you started to have some worries about his development.

But it was again about the 14th, 15th month bit

where he'd do things that were totally off the wall for no reason,

like the banging the head on the floor.

His elder brother didn't do that, but he would do it.

And there are people that would say, "Well, let him do it,

"and then if it hurts, he'll stop," but he didn't stop.

-A much higher pain threshold.

-That's right.

'A lower sensitivity to pain or heat or cold can be a symptom of autism,

'another sign the brain is processing sensory information differently.'

Three minutes and coat time...

And his behaviours were different, very different from his brother's, what he was doing.

Were there any sort of typical autistic-type behaviours

that you, looking back now, you can think, OK?

-Head shaking, a lot of head shaking.

-Yeah, just the...

-Really, really aggressively shaking it from side to side.

-Side to side.

They both did that, didn't they?

They did both do that, but the eyes were somewhere else

when they were doing it.

Why not?

Zaine!

CAR TYRES SQUEAL

Sorry!

Listen, you could have got run over, sweetheart.

You know this is a main road and...

All right, sweetheart, listen...

'You blame yourself, you go through a process of,

'"What have I done wrong? Why is my child'

"not responding in a typical way

"that you would expect from what I'm doing?"

We like school!

We do, once we're there!

There are lots of children who've got a bit of a tummy wobble.

They're a little bit nervous, it's their first day.

All right. But, listen, then they make friends.

And they do lots of good lessons.

What do you hate about it, Zaine?

The people. Well...

Too noisy. OK, shall we let them go in?

-Now, listen. Listen.

-No!

'Mandy and Jason now feel that

'in order to get the best support and care for Zaine,

'they need to start the difficult process

'of having him formally diagnosed.'

So the diagnosis for Jake opened...

I mean, obviously, it had its impact, but it opened some doors.

It's the best thing that ever happened to us, personally,

because for the family, we could deal... We knew what it was,

we can move on, work with it and move on.

-And you had an explanation.

-That's right.

And I suppose, in some ways, that the beginning of an understanding

that all of the, well, I don't know,

everything you'd seen in your little boy

could be thought about in a different way.

-Definitely, definitely.

-Yeah.

Yeah.

-You all right?

-Yeah.

That's strange, because we don't go back there, we never look back,

we go forward.

I think Jake's future is more positive than Zaine's.

-Right.

-Because we don't know where we're going with Zaine

and how to support him and what to do to help his future,

to reach his full potential.

-We don't know what his potential is...

-As yet.

-..as yet.

I'll give you a hand, I'll give you a hand.

At Birkbeck College in London,

scientists are now engaged in the most comprehensive long-term study

of the brothers and sisters of children with autism

who, because of their genes,

are known to be at a higher risk of developing the condition.

They are conducting a wide variety of tests

to try and discover new clear biomarkers,

specific physical differences

between autistic and non-autistic children

that will make future diagnosis of autism much earlier and easier.

One of their studies involves making recordings

of the electrical activity of brains in babies as young as eight months old.

The babies are shown various pictures and sounds

to test how they respond to any variation.

So what happens here is that we try to, um...

bore the brain, or habituate it

to repeated sounds, then we expect,

because it gets bored, that when a new sound comes in,

they will notice the difference.

MACHINE BEEPS

And what we see, um, in the babies at risk for autism

is that they are always alert,

they don't habituate,

and that's why when something changes,

they don't notice that change as well.

-Cos they're always in a high state of alert.

-Always, yeah.

'The Birkbeck team have found very subtle differences

'in the way the babies at higher risk of autism respond to these sounds

'to those who are not.'

So this is giving us a real opportunity

to push things right back to their beginning.

Exactly, wouldn't it be wonderful?

So, basically, what Kim is trying to do is, um...

to prompt Noah to, er, play with her,

to connect with her, to maintain eye contact,

to focus together on a joint activity.

Um, and this is one of the key skills that we think

help children develop these amazing set of skills

over the first few years of life.

And things like language and several other parts of cognition

that depend, depend on their ability to learn from other people.

So a way of looking at his behaviour?

-Yes, exactly.

-Alongside some of the other experiments that you're doing here?

Yes. Yes, so it's absolutely critical for our project

that, um, when we see some changes at the level of brain development

when we're in these artificial laboratory settings,

that we're able to tie this back to something that's actually more real

in the child's environment and their relationship with others.

'This extraordinary study hopes to run for the next five years.

'It aims to build up the most comprehensive set of data

'about the siblings of children with autism,

'and, hopefully, to come up with a new set of early markers

'to enable doctors to spot autism,

'at least in at-risk children, as soon as possible after birth.'

This is exactly what makes these studies so powerful,

that it's sort of this natural history of the child that we're following.

For the past eight months,

Tony Miller has been spending a few days each month

at a publicly funded residential care home, Flexicare,

to allow Lainey time on her own

and to see whether it might provide a solution

to the problem of Tony's long-term care.

Lainey is preparing him for this major change.

Tony!

Tony listening? You want to come and see?

No!

Tony!

Tony listening. Come over here.

Tony. Good boy, good boy. Come here, come and see Mummy.

Well done, let Mummy show you social story.

Headphones off. That's good listening.

Come round here. Come and have a look.

OK, look at Tony's diary. OK?

OK. Now, tomorrow... Tomorrow, which is Friday,

Tony is going into Flexicare.

So we have blue, Flexi, pink for school, yellow for home.

And tomorrow, Tony is going into Flexicare...

Yeah?

..for eight sleeps.

School on Monday, school. And then...

Tony comes home...

Looking... Home.

Yeah?

..on Sunday.

-Is that good, Tony?

-Yes.

Tony listening?

-Want to see? You want to see?

-No see.

-No see?

-How much of that has registered?

-Mmm.

-I think he's took some in.

-No, I think he did.

-Yeah, he's done well.

'So something different lies ahead.

'For me, yes, and for all of us, for all of us, it is...

'And the dynamics of the family will change...and Tony will change,

'he's growing up.

'He's trying to tell me, in his non-communicative world,'

"I don't want you around, Mum, I want my friends," which is normal.

Good waiting, Tony!

'When he was younger, I was probably just the object to him.

'For whatever he wanted, or what he needed.'

Wow! And it's... Oh, no...

'I really had to work hard with him, to get him to...

'that I'm Mum, I am a person.

'Now he understands. It's took a long time, but now he understands.

'But it's took me 15 years.'

Pull the string, like Mummy showed you. Pull the string.

Good boy, here it goes.

Hold your string.

Woah! Run, Tony, run!

HE SCREAMS

'It doesn't matter, once Tony's placed,'

if I get killed in a car crash next week, he's fine.

-That's it, keep tucking.

-It's very high, isn't it? Very high!

-There you go!

-Wow!

Come on!

'You're searching to bring that child back,'

back to you, whether it's, you know, emotionally, psychologically,

you're having to do it to bring it back

and it does take an awful lot of time.

HE SCREAMS

It's OK. Listening. What's the matter?

What does Tony want?

What does Tony want?

-Home.

-Home. You want to go home?

-Yeah.

-Tony finished?

-Finished.

-OK.

OK, let's get your kite, get your kite. Wrap it up.

Wrap it up.

It's the day of Zaine Clarke's assessment.

Mandy and Jason are taking him to Purley, in Surrey,

to see a private clinical psychologist

who specialises in diagnosing children with autism.

Dr Amitta Shah will spend the day observing Zaine

and talking with Mandy and Jason about his developmental history.

She and the family have agreed that I can observe the process.

It is the first time in the UK that it has ever been filmed.

Which one do you think it might be?

Dr Shah has collected all the previous reports made on Zaine

by various doctors, paediatricians and his school.

She has also viewed all the videos

Mandy and Jason have made of his behaviour.

She must weigh up all the evidence

before she can make a proper diagnosis.

What happened at about a year? That's when you first felt, "Oh..."

Yeah, he began to scream and cry a lot.

And could you establish reasons for that, or...?

No.

Has he had a real regression,

a setback, you know, has he, did he start talking

and then he stopped talking, or did he...?

-He did it with food.

-With food?

-I noticed with the way he was eating.

-Yeah.

-His skills were very, very good from the high chair, from the fingers.

-Yeah.

Progressing with, you know, the cutlery.

And then he seemed to go back and he became very clumsy.

Oh, interesting. What age did he go clumsy?

About 14 months on.

Where do you live?

-I live in England.

-In England? But what place in England, do you know?

I think I live in...

-A very nice place.

-Do you go out and play?

Yeah, in my house, sometimes...

'Dr Shah's assessment is based on the internationally accepted

'Diagnostic Interview for Social and Communication Disorders,

'a specially designed informal interview that helps her build

'a detailed picture of Zaine's abilities,

'problems and atypical behaviour from birth till now.'

Oh, it's going to come back to me, is it?

'She will also make direct observations of Zaine's behaviour

'both as he plays and performs various specialised tasks.'

You've seen him, haven't you, Laverne?

What situation did you see?

He was on the climbing frame.

And I think, from a distance,

it looked like he was playing with the other children,

but, actually, he was chattering away to himself or ordering them around.

From a distance, it looks as if he's playing alongside and...

-Yeah.

-..interacting, but...

When you look closely...

-You hear him talking.

-You hear him talking.

-You hear him telling other children what to do.

-What to do.

'Dr Shah is trying to assess

'whether Zaine's behaviour falls on the autistic spectrum.

'She needs to be sure that this isn't related

'to other problems in his life.

'She is looking for anything that suggests impairment

'of social interaction, language and imagination.'

OK, are you warm, warm enough?

Oh... Hello, you're running away!

Zaine?

-What's he like generally at home? Can he get quite moody?

-Yeah...

-Do his moods go up and down?

-Yeah. Oh, mood swings. Yeah.

-Is it, yeah?

-At the drop of a hat, he will just kick off, he can kick off.

I know it sounds really strange,

but it's almost like he gets depressed.

It's very strange and he said, "Bear's going to die,"

and he'll cry real tears, real, real.

-But is this just out of the blue?

-Out of the blue.

Nothing, nothing will console him until he comes out

of this really, really low mood in his own time.

At the end of the day,

after she has spent several hours talking to Mandy and Jason

and observing Zaine, Dr Shah is now ready to make her diagnosis.

OK, OK. Mandy and Jason,

I'm now going to give you some feedback from...

what the assessment has shown us.

It's not just based on today, but, as you know,

I've had a lot of reports beforehand from the paediatrician.

I've seen those DVDs, the films of Zaine.

All those questions we asked you this morning.

And then, of course, meeting Zaine himself has made it all

very, very clear to us.

You know, all his, all his early behaviours and, uh...

all the, what is functioning now

shows clearly that he is on the autistic spectrum

and he fits into the sub-group of children

who have Asperger's syndrome

because of the quality of his social interaction.

But what he is showing is very high intelligence

and he's showing a lot of very normal sociability as well,

which is very positive.

And the difficulties are to do with his own frustrations

because he is extremely intelligent.

There are lots of people who have very satisfying lives

and have a career, and so on.

But the important thing is that with someone like Zaine,

you know, the emotions are a little bit disarranged.

And he, he can become anxious, he can become stressed.

That's what we have to bear in mind,

and actually make sure that life is arranged for him in such a way.

So I think that's, uh, it's time for you to maybe...

Do you want some time just to take it in?

And then maybe we can have another chat in a few minutes, or, um...

Just, it's a lot, isn't it?

-Are you all right?

-Yeah, I'm fine, yeah.

-Are you OK?

-Yeah.

Zaine has been diagnosed with autism and having Asperger's syndrome.

This means that, although his cognitive and linguistic skills are relatively well developed,

he'll have significant difficulties in social interactions.

'I was trying to hang on to not being emotional, I suppose.'

Just having something clarified,

-I was trying to hang on to keeping it all together, really...

-Mmm.

-Yeah. You know, thinking, this is it.

-It was emotional.

-It was an emotional...

-It was really emotional.

It's a long, exhausting road to get here.

Yeah, and it's the beginning of something as well, isn't it?

There might be a chance

that everything will be typical in his world.

Yeah, yeah. So it's time to move on with Zaine.

-Yeah.

-Who I think has had this day...

-He's loved it.

-Devoted to him.

-Has he even known what's...?

The attention's been amazing, he's loved it,

Well, thank you. I mean, I do feel, you know,

there I was sitting on the edge of it,

not going through it with you but, you know,

having my own emotional response to it, but, um...

I'm very pleased that we have some answers.

-Thank you.

-OK.

-Brilliant, thank you.

I'm all right now.

I'm all right till she... She has a way, Laverne has a way.

If you include the wider families,

autism affects the lives of over two million people in the UK every day.

At its most severe, it is a serious, lifelong and disabling condition.

Its effects are often hidden and, without the right care,

it can have profound, sometimes devastating effects

on individuals and their families.

But, for others, like Michael and Zaine,

autism needn't be a barrier to living a full life,

just a different way of experiencing the world

that we are only just beginning to understand and appreciate.

'Where's the future going for Tony?

'The future for Tony now is residential care.

'We've had to choose it because, with puberty,

'the behaviour's become really quite challenging.

'Well, I need to let Tony go, so he can learn and progress, because...

'all our children leave home, it's a natural process.

'With Tony, we always knew, I knew from the age of two,

'he was going to end up in residential care,

'so it was very accepting.

'And I always said that the day it became too much,

'that it became too challenging and it became unmanageable,

'I would really have to think about putting him into residential,

'so it was a huge, huge decision.'

Yeah, wow! Wow, here's Tony's new house!

HE SCREAMS

'What struck me was how peaceful and serene it is here.

'You know, someone like Tony can come out and jump and flap'

and scream for England and...

the only people that are going to hear him are the cows.

'And it's just so good, it's, you know, you've got this home here,

'which is a four-bedded bungalow,

'and Tony will be living with three other young people here

'in the same age bracket, um...

'Over there, you've got an education centre

'and in there, they've got a lovely sensory room,

'they've got a kitchen where'

they'll be teaching Tony life skills

and how to make sandwiches, and just be really independent of me.

Remember Mummy loves you. I see you in eight days.

No.

Oh, no.

'I know he's happy, this is the right thing, and, um...

'There's a lot of adjustment to be doing for Tony, and for me...

'But this is the right thing to do.

'Really happy, I'm really happy.'

He's starting a new phase in his life now, and so are we, and that's good.

I'm really pleased for him.

Jake is still at a mainstream school.

With Dr Shah's advice,

Mandy and Jason can now start to arrange

more care and support for his brother Zaine.

Michael Barton is planning another book about autism

and is hoping to find a job using his physics degree

when he leaves university.

Autism is still an incredibly puzzling disorder of the brain

but, over the last 50 years, we have started to unlock

some of the meaning behind the more bizarre behaviours and symptoms.

And we are beginning to understand what happens in the brain

as we process all of the sensory information in the world around us

and to comprehend how this affects the way that children think, act and grow into social beings.

To learn more about autism,

and to separate fact from fiction,

go to...

Follow the links to

the Open University.

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