0:00:02 > 0:00:04As a psychologist, I am fascinated by how the brain develops
0:00:04 > 0:00:08when children grow from babies into adults,
0:00:08 > 0:00:11and why sometimes, things don't follow the typical pattern -
0:00:11 > 0:00:13when they lack the usual social skills,
0:00:13 > 0:00:17when they struggle with learning,
0:00:17 > 0:00:19and when their anxieties mean
0:00:19 > 0:00:22they can't deal with the daily pressures of the world around them.
0:00:24 > 0:00:26Over the last 50 years,
0:00:26 > 0:00:29neuroscience has begun to unlock a new understanding
0:00:29 > 0:00:33of how the brain works and what happens when it develops differently.
0:00:34 > 0:00:37We don't know where we're going with Zaine and how to support him
0:00:37 > 0:00:40or what to do to help his future.
0:00:40 > 0:00:41We can run away or we can fight.
0:00:41 > 0:00:45Some children with autism are fighting for their lives.
0:00:45 > 0:00:48In this film, I want to explore how growing children
0:00:48 > 0:00:53are affected by the common developmental disorder autism,
0:00:53 > 0:00:56through the eyes of children and families affected by it...
0:00:56 > 0:00:59There's just absolutely no emotion whatsoever.
0:00:59 > 0:01:01She's just staring right at you.
0:01:01 > 0:01:04This is exactly what makes these studies so powerful,
0:01:04 > 0:01:09that it's sort of this natural history of the child that we're following.
0:01:09 > 0:01:11..to see what they can tell us about how our brains
0:01:11 > 0:01:15process all the information from the world around us.
0:01:15 > 0:01:17Remember Mummy loves you.
0:01:17 > 0:01:25This programme contains strong language.
0:01:27 > 0:01:29We are all social animals.
0:01:29 > 0:01:33In our hectic, busy world, we need to share, negotiate and cooperate,
0:01:33 > 0:01:37make and keep appointments, control our desires
0:01:37 > 0:01:40and respond to familiar and unfamiliar people.
0:01:40 > 0:01:43If we didn't, there'd be chaos.
0:01:44 > 0:01:48Our brains are constantly monitoring the social situations
0:01:48 > 0:01:49that we find ourselves in,
0:01:49 > 0:01:51attempting to mind-read the people around us
0:01:51 > 0:01:53and to help us to respond appropriately.
0:01:55 > 0:01:58These social skills are partly hard-wired from birth
0:01:58 > 0:02:00and partly learnt in childhood
0:02:00 > 0:02:04and they are absolutely crucial to the world in which we live.
0:02:06 > 0:02:09But there is a group of people for whom social interaction
0:02:09 > 0:02:13is not necessarily hard-wired from birth or easily learnt in childhood
0:02:13 > 0:02:16and, for some, remains completely absent.
0:02:19 > 0:02:21HE SCREAMS
0:02:22 > 0:02:26Tony Miller was diagnosed with severe autism
0:02:26 > 0:02:29at the age of 15 months.
0:02:29 > 0:02:33He is now 15 and lives at home with his mother, Lainey.
0:02:33 > 0:02:34I mean, perhaps it's best to take it
0:02:34 > 0:02:37right back to the beginning, you know,
0:02:37 > 0:02:41and for you to tell me a little bit about how he was as a baby.
0:02:41 > 0:02:43When did you start to notice
0:02:43 > 0:02:46that maybe his development wasn't progressing in the way you expected?
0:02:46 > 0:02:49Well, Tony was my third child, um...
0:02:49 > 0:02:52and a very traumatic birth, a long labour,
0:02:52 > 0:02:56roughly around about the seventh, eighth month mark,
0:02:56 > 0:03:00I knew that something wasn't quite developing.
0:03:00 > 0:03:04He would interact, he would smile and play as a baby would,
0:03:04 > 0:03:08- but if you gave him toys, whereas a baby will explore...- Yes.
0:03:08 > 0:03:11..Tony didn't, he would just look at them.
0:03:11 > 0:03:14And I was having to put his hand on and show him what to do.
0:03:16 > 0:03:20As a child psychologist, I use key developmental milestones
0:03:20 > 0:03:23in order to judge any baby's progress in its language,
0:03:23 > 0:03:26physical development and social and emotional behaviour.
0:03:28 > 0:03:32A first warning sign for autism can be when children like Tony
0:03:32 > 0:03:36fail to reach some of these key milestones.
0:03:36 > 0:03:39A crucial one is when a baby makes eye contact with its mother,
0:03:39 > 0:03:41an early sign of typical socialisation.
0:03:44 > 0:03:49Around about the 12, 13, 14-month mark,
0:03:49 > 0:03:52I lost the eye contact and it seemed to happen overnight.
0:03:52 > 0:03:54I was feeding him breakfast one morning
0:03:54 > 0:03:57- and he was looking everywhere but at me.- And it had gone.
0:03:57 > 0:03:58It had gone.
0:03:58 > 0:04:02We had all of the baby things but, sort of from the sixth month on,
0:04:02 > 0:04:07I started to lose bits... bit by bit of those things.
0:04:07 > 0:04:10HE SCREAMS
0:04:10 > 0:04:12And you, you found yourself having to...?
0:04:12 > 0:04:15HE SCREAMS
0:04:24 > 0:04:26'Autism is a lifelong condition
0:04:26 > 0:04:30'affecting how the brain processes information.
0:04:30 > 0:04:34'It's now thought to affect at least 1% of children in the UK.'
0:04:36 > 0:04:39Four times as many boys as girls are diagnosed with autism.
0:04:39 > 0:04:42Its causes are not fully understood.
0:04:42 > 0:04:46Numerous studies suggest that genes play a significant part,
0:04:46 > 0:04:49but environmental factors seem to play a role too.
0:04:52 > 0:04:55Symptoms fall into three main clusters -
0:04:55 > 0:04:56problems with social interaction,
0:04:56 > 0:05:01with communication and repetitive activities and interests.
0:05:03 > 0:05:07How would you explain what autism is?
0:05:07 > 0:05:10Autism is a disability,
0:05:10 > 0:05:16a developmental disability that affects the way a person thinks,
0:05:16 > 0:05:20communicates and interacts with people.
0:05:20 > 0:05:23And Tony suffers from the severe end of all of that.
0:05:23 > 0:05:27So how Tony thinks and how we think,
0:05:27 > 0:05:29how he sees his perception of the world
0:05:29 > 0:05:32is totally, totally different to what you and I would see.
0:05:32 > 0:05:36And his interaction is only on his terms.
0:05:37 > 0:05:38At the age of five,
0:05:38 > 0:05:42when most children are expected to be almost fluent in their speech,
0:05:42 > 0:05:45Tony had almost no spoken words,
0:05:45 > 0:05:48another warning sign for autism.
0:05:48 > 0:05:51He still has little spoken language.
0:05:51 > 0:05:55So Lainey has had to learn a new way to communicate with her son.
0:05:55 > 0:06:01He's given a picture of a juice and you have the juice there.
0:06:01 > 0:06:03So it's getting him to focus,
0:06:03 > 0:06:06and he gives you the picture and you give him the juice.
0:06:06 > 0:06:09So he understands, if I give you that, then I get that.
0:06:09 > 0:06:12And then you would advance that to biscuits, you would advance that to toys,
0:06:12 > 0:06:15you would advance that to food and, and eventually, you know,
0:06:15 > 0:06:17what we, I would do with Tony is go,
0:06:17 > 0:06:21"I want juice, I want... Say it. Say it, say it. Juice, juice."
0:06:21 > 0:06:25And so, that symbol could then be removed
0:06:25 > 0:06:28and he would then be saying the word juice as he does now.
0:06:28 > 0:06:30So he'd put the words in, he'd use his language,
0:06:30 > 0:06:33- which is what you're ultimately looking for, isn't it?- Yeah.
0:06:33 > 0:06:35- That exchange of words.- That's it.
0:06:35 > 0:06:38- Can I just ask about the feelings ones?- Yeah.
0:06:38 > 0:06:39Cos how do you use those?
0:06:39 > 0:06:43When he has a meltdown, you know, I will say, "Tony, tell me
0:06:43 > 0:06:48"what you're feeling," and he'll tell me, "Angry, angry."
0:06:48 > 0:06:50And then I'll say,
0:06:50 > 0:06:53"What's made you angry, what's made you angry?"
0:06:53 > 0:06:55But if we're out in the community, and he starts to get upset,
0:06:55 > 0:06:58you know, and I...he can't say,
0:06:58 > 0:07:00"It's because there's too many people, Mum."
0:07:00 > 0:07:06At its most severe, autism can cause an extreme form of social isolation.
0:07:06 > 0:07:09Today, Tony spends most of his waking hours
0:07:09 > 0:07:11sat in front of his computer,
0:07:11 > 0:07:14apparently oblivious to the people around him.
0:07:16 > 0:07:19When he was little, he didn't like to be cuddled.
0:07:19 > 0:07:21And I thought, "No, I'm not having this."
0:07:21 > 0:07:24So I'd start off by tickling him and playing with him,
0:07:24 > 0:07:28rough and tumble, and throwing him about, as you do with children,
0:07:28 > 0:07:31and said, "You know what? That's fun," so we did that.
0:07:31 > 0:07:34So now, I have taught him, I had to teach him something that is so natural,
0:07:34 > 0:07:38"I want to hug you, Mum," but it's took years to get there.
0:07:41 > 0:07:45Behavioural observations have always played an important role in autism research.
0:07:45 > 0:07:49Now, technology is allowing scientists to investigate the link
0:07:49 > 0:07:52between these unusual behaviours and processes in the brain.
0:07:55 > 0:07:59'Psychologists at the University of Nottingham are trying to uncover
0:07:59 > 0:08:04'why people like Tony appear to be so socially isolated.
0:08:04 > 0:08:07'They want to understand how our brains work
0:08:07 > 0:08:09'when confronted with social situations,
0:08:09 > 0:08:13'how we understand the social cues we encounter every day.'
0:08:13 > 0:08:15We're interested in two particular brain systems,
0:08:15 > 0:08:21so if we look on the side in, um, intraparietal sulcus,
0:08:21 > 0:08:24that's an area which we know from many studies it responds
0:08:24 > 0:08:27when you see another person picking up objects,
0:08:27 > 0:08:29interacting with objects,
0:08:29 > 0:08:31that responded exactly the same
0:08:31 > 0:08:34in the typical and the autistic participants.
0:08:34 > 0:08:35But on the inside of the brain,
0:08:35 > 0:08:38there's a region at the front called medial prefrontal cortex,
0:08:38 > 0:08:40which, again, we know from other studies,
0:08:40 > 0:08:43is much more involved in social interaction
0:08:43 > 0:08:48and understanding other people's, beliefs, desires, motivations,
0:08:48 > 0:08:52and that region was the one that was showing different responses
0:08:52 > 0:08:55between the typical and the autistic participants.
0:08:55 > 0:09:00'One of the tests they are using to help spot these differences
0:09:00 > 0:09:03'involves both autistic and typical people viewing some short films
0:09:03 > 0:09:05'whilst their eye movements are monitored
0:09:05 > 0:09:08'to assess how they predict the actions they are watching.'
0:09:10 > 0:09:12So what we're interested in
0:09:12 > 0:09:15is whether your eyes are able to predict these unusual actions.
0:09:15 > 0:09:18'The study is still under way, but initial results suggest
0:09:18 > 0:09:21'that people with autism tend not to look to the face
0:09:21 > 0:09:24'for information to help them predict actions.'
0:09:25 > 0:09:27OK, and so, you've got my results.
0:09:27 > 0:09:30I have got your results, if you would like to have a look.
0:09:30 > 0:09:34'This latest eye-tracking technology is starting to give us real insight
0:09:34 > 0:09:37'into how everyday social interactions
0:09:37 > 0:09:41'rely on the processing of subtle cues by our brains.'
0:09:41 > 0:09:44In terms of brain function, does it seem that people with autism
0:09:44 > 0:09:46are having to call on different resources
0:09:46 > 0:09:49to help them really understand and be in the world?
0:09:49 > 0:09:53It's much harder work to deal with any kind of social situation
0:09:53 > 0:09:55when you're not picking up the social cues,
0:09:55 > 0:10:00and the thing that my research is particularly interested in is these non-verbal behaviours,
0:10:00 > 0:10:05the unconscious things that people just don't realise are going on all of the time.
0:10:05 > 0:10:10Autistic Spectrum Disorder - ASD, as it's known,
0:10:10 > 0:10:14encompasses a range of severity and symptoms.
0:10:14 > 0:10:18Tony has severe difficulties with social interaction,
0:10:18 > 0:10:21with communication and repetitive behaviours.
0:10:21 > 0:10:24He also has severe learning difficulties.
0:10:24 > 0:10:28HE SCREAMS
0:10:28 > 0:10:30So what's... What's he telling us at the moment?
0:10:30 > 0:10:33What he's doing there is repeating videos,
0:10:33 > 0:10:36because he watches Disney videos, It could be Winnie the Pooh,
0:10:36 > 0:10:39his Barney, his Gummy Bears, his Sailor Moon, it's all Disney.
0:10:39 > 0:10:42- Yes, yeah.- He's repeating.- Oh, OK.
0:10:42 > 0:10:46He's reacting what he sees on the videos
0:10:46 > 0:10:48and he'll get up and do all the dancing
0:10:48 > 0:10:50like Barney does and the Teletubbies,
0:10:50 > 0:10:54and then, whatever he is watching, he'll act it out.
0:10:54 > 0:10:57So he's really in his own world.
0:10:57 > 0:11:00Constantly, yeah, and he's oblivious,
0:11:00 > 0:11:03he's just, he's happy and he's playing, he's noisy...
0:11:03 > 0:11:04SHE CHUCKLES
0:11:06 > 0:11:10One explanation for Tony's unusual interests
0:11:10 > 0:11:13is that his brain processes information very differently to mine.
0:11:15 > 0:11:19His narrow range of repetitive activities could be
0:11:19 > 0:11:22because he struggles with the unpredictability of everyday life
0:11:22 > 0:11:25and especially anything that alters his routine.
0:11:25 > 0:11:28We know, because our imagination tells us,
0:11:28 > 0:11:31I know I'm going to get up and have breakfast and I know what's going to happen to my day.
0:11:31 > 0:11:35He has to be reassured, because he doesn't know what's going to happen.
0:11:35 > 0:11:37Sometimes he, you know, it's unpredictable.
0:11:37 > 0:11:40If we can let them know this is what's going to happen to your day,
0:11:40 > 0:11:44this is what's going to happen to your life, your world,
0:11:44 > 0:11:47this is what we need to do to prepare you, um...it's the knowing.
0:11:47 > 0:11:49Good! Tastes good!
0:11:49 > 0:11:53Children with autism's dislike of change in any aspect of their lives
0:11:53 > 0:11:56can include their diet.
0:11:56 > 0:12:01At the moment, the only food that Tony will eat is a particular type of pizza.
0:12:03 > 0:12:06As a baby, I fed him everything, like we ate, he ate.
0:12:06 > 0:12:08And as they get older, it's, "I don't like cabbage,"
0:12:08 > 0:12:10same as, "I don't like broccoli,"
0:12:10 > 0:12:12and they can tell you and you can encourage.
0:12:12 > 0:12:16Tony couldn't communicate that. He would just refuse.
0:12:24 > 0:12:26When Tony was a child,
0:12:26 > 0:12:30any trip outside the home was almost impossible, even to the supermarket.
0:12:33 > 0:12:35Any change in his routine would distress him.
0:12:37 > 0:12:42But after a lot of careful work, Lainey has now accustomed Tony
0:12:42 > 0:12:44to the regular family shopping trip.
0:12:44 > 0:12:49Today... What are we doing today? Are we doing some shopping?
0:12:49 > 0:12:51Doing some shopping?
0:12:51 > 0:12:54OK, put those in the trolley for Mummy.
0:12:54 > 0:12:58- Good boy, put them in the trolley. Well done.- Waiting. - Waiting, good boy. Come this side.
0:13:00 > 0:13:04I like to keep him on this side so I can make sure he's OK. Good boy!
0:13:04 > 0:13:06And he links up with you very well,
0:13:06 > 0:13:08so there's something about having him right there.
0:13:08 > 0:13:12Yes, I need to keep him close cos he can start to bounce around
0:13:12 > 0:13:16- and he can be quite frightening for the children.- Yeah, yeah, yeah.
0:13:16 > 0:13:20And also, if, you know, if he's going to go into a meltdown...
0:13:20 > 0:13:23I don't want him attacking members of the public, which he has done,
0:13:23 > 0:13:26- and that could be quite difficult. - Yeah.
0:13:26 > 0:13:29You've been bringing him here for a number of years now.
0:13:29 > 0:13:31- Yes, yeah.- So he knows the routine, knows the drill.
0:13:31 > 0:13:35Yeah, I have to really time it carefully what time I bring him.
0:13:35 > 0:13:39Normally, I would bring him about eight o'clock in the morning, it's really quiet.
0:13:39 > 0:13:41Sometimes, we've been here at half past six.
0:13:41 > 0:13:42SHE CHUCKLES
0:13:42 > 0:13:45Tony, can I have some Pepsi, please?
0:13:45 > 0:13:48Please, help Mummy. Very heavy!
0:13:48 > 0:13:52OK, put it in...the trolley!
0:13:52 > 0:13:53On the yogurts!
0:13:53 > 0:13:54THEY CHUCKLE
0:13:54 > 0:13:59'Typical brains process and integrate the information we receive from all our senses
0:13:59 > 0:14:05'to enable us to organise, prioritise and understand what is going on around us.
0:14:05 > 0:14:08'But many people like Tony have difficulty doing this.
0:14:08 > 0:14:14'So, for him, everyday life can be a confusing, frightening series of places, sights and sounds.'
0:14:17 > 0:14:20He's quite... Yeah, give him my computer.
0:14:20 > 0:14:22Yogurts. Get Tony some yogurts.
0:14:25 > 0:14:27- Just a bit noisy here?- Yeah. - The fridges?
0:14:27 > 0:14:32Yeah, this is where we, he will struggle here, it's the noise level.
0:14:32 > 0:14:33Tony, do you want to pick some yogurts?
0:14:33 > 0:14:36'Tony suffers from hypersensitivity to noise
0:14:36 > 0:14:38'and other sensory experiences.
0:14:38 > 0:14:42'So, for him, even the hum of a supermarket fridge can be overwhelming.'
0:14:42 > 0:14:44Put them in. Well done!
0:14:44 > 0:14:47But that very slight change in the noise really did affect him.
0:14:47 > 0:14:50- Yes.- Just coming round that corner, didn't it?
0:14:50 > 0:14:52Mm. You could see it, you could see the, um...
0:14:52 > 0:14:57- going for his hands covering up. - Mm.- His sensory overload is huge
0:14:57 > 0:15:00and he really struggles with it at times, so...
0:15:00 > 0:15:02Nearly finished, Tony.
0:15:02 > 0:15:05He's telling me, "Waiting, waiting," which tells me,
0:15:05 > 0:15:08that's the signal that, you know, "I'm coping, Mum, but not for much longer."
0:15:08 > 0:15:11- Don't push it for much longer. - Not for much longer.
0:15:13 > 0:15:17At the University of Cardiff's School of Psychology,
0:15:17 > 0:15:20scientists are in the middle of a two-year study
0:15:20 > 0:15:22using the latest neuro-imaging technology
0:15:22 > 0:15:26to uncover how the brain processes sensory information
0:15:26 > 0:15:31and why the brains of people with autism do this differently.
0:15:31 > 0:15:34Using a state-of-the-art brain scanner,
0:15:34 > 0:15:38they are recording the magnetic fields produced by the brain activity
0:15:38 > 0:15:40of both typical people and people with autism
0:15:40 > 0:15:44when they are given different sorts of sensations.
0:15:47 > 0:15:50So we're recording 275 separate traces
0:15:50 > 0:15:52of what's going on in John's brain.
0:15:52 > 0:15:55What we do is, we give a certain number of these stimuli
0:15:55 > 0:15:58and then, at the end, John will come out
0:15:58 > 0:16:01and we will continue testing him in different ways down in the MR.
0:16:01 > 0:16:03But we'll take all this data
0:16:03 > 0:16:07and, because we know exactly whenever John got those vibrations,
0:16:07 > 0:16:09we can reconstruct how his brain responded.
0:16:09 > 0:16:14The big response that you get from the area in the brain called the somatosensory cortex,
0:16:14 > 0:16:16which is the first area
0:16:16 > 0:16:19that picks up the sense of you being touched there,
0:16:19 > 0:16:21happens in about 70 milliseconds.
0:16:21 > 0:16:25And we build up, essentially, a group response between our autistic group
0:16:25 > 0:16:27and our neuro-typical group
0:16:27 > 0:16:29and we try and look for differences in there.
0:16:29 > 0:16:33We're really interested in trying to get a better handle
0:16:33 > 0:16:37on the neuro-biology. In other words, the brain correlates
0:16:37 > 0:16:40of what's going wrong with these sensory symptoms in autism.
0:16:40 > 0:16:42For some people, it might be loud sounds,
0:16:42 > 0:16:44for other people, it might be bright lights.
0:16:44 > 0:16:47'And more and more parents are reporting that, actually,
0:16:47 > 0:16:50'these are the systems that they first notice with their children.
0:16:50 > 0:16:54'That, actually, there's an overload of sensory information.
0:16:54 > 0:16:55'That's right.'
0:16:55 > 0:16:59If you have the bad communicative problems that we see in ASD,
0:16:59 > 0:17:03the problem then is to actually explain why they're responding
0:17:03 > 0:17:06because we don't actually know, or we don't have access
0:17:06 > 0:17:08to other people's internal states.
0:17:08 > 0:17:11I've got no idea really how you're feeling when you're looking at all this.
0:17:11 > 0:17:13We assume that we feel the same.
0:17:13 > 0:17:15This isn't particularly anxiety-generating for us.
0:17:15 > 0:17:17But, you can imagine,
0:17:17 > 0:17:19if you go into a place which has all these triggers
0:17:19 > 0:17:20for a person on the spectrum,
0:17:20 > 0:17:22it's going to be a horrific experience.
0:17:22 > 0:17:25The one thing that parents do bring is the question about...
0:17:25 > 0:17:28there's something, you know, WRONG with their child.
0:17:28 > 0:17:32And actually, you know, lots of young children who do have an ASD presentation,
0:17:32 > 0:17:36they're experiencing the world very differently to you and I,
0:17:36 > 0:17:38and I think that's an important distinction to make.
0:17:38 > 0:17:42No, I would completely agree, you've really hit the nail on the head.
0:17:42 > 0:17:44It's the difference that we need to get across.
0:17:44 > 0:17:46But it's also a feeling of understanding,
0:17:46 > 0:17:49it's to try and get across that the reason that that person
0:17:49 > 0:17:51is freaking out or going crazy in the supermarket
0:17:51 > 0:17:55is not because they have problems that are behavioural in origin
0:17:55 > 0:17:58- or, more than that, they're just badly behaved.- Yeah.
0:17:58 > 0:18:02They're reacting in a profoundly different way to those stimuli than we do.
0:18:02 > 0:18:07'So one explanation for Tony's different behaviour
0:18:07 > 0:18:10'could be that the constant noises and repetitive movements he makes
0:18:10 > 0:18:14'are his attempt to block out all the heightened sensations of our world
0:18:14 > 0:18:16'and replace them with his own.
0:18:16 > 0:18:20'It could be his way to deal with stress and uncertainty.'
0:18:20 > 0:18:22HE SCREAMS
0:18:25 > 0:18:30Tony, Tony, hold Mummy's trolley, please. Thank you.
0:18:30 > 0:18:32We're going to get Tony some juice.
0:18:32 > 0:18:33Get his favourite...
0:18:33 > 0:18:37Cranberry juice, his cranberry juice.
0:18:37 > 0:18:40Oh, this is heavy, Mummy do that one, OK?
0:18:42 > 0:18:44'Tony Miller is now 15.
0:18:44 > 0:18:47'Like any teenager, he is also going through puberty,
0:18:47 > 0:18:50'with all the usual hormonal changes.'
0:18:52 > 0:18:54'He's actually getting to be quite stroppy.
0:18:54 > 0:18:58'But along comes, with the stroppiness, comes that he has no boundaries,
0:18:58 > 0:19:01'he doesn't understand these emotions.
0:19:01 > 0:19:03'My other two children, if we'd have had a disagreement,
0:19:03 > 0:19:06'as most teenagers, would walk out, slam the door,
0:19:06 > 0:19:08'and go to the bedroom, "Bye, see you," you'll get over it.
0:19:08 > 0:19:10'With Tony, it's completely different.
0:19:10 > 0:19:13'The meltdown comes because he doesn't understand these emotions.
0:19:13 > 0:19:17'And, in between all of that, he's 15, you've got the voice breaking,
0:19:17 > 0:19:21'you know, you can't explain to him, your voice is going to break.
0:19:21 > 0:19:25'And all as well, there's the sexuality bit comes into it as well.'
0:19:32 > 0:19:35Thank you! Be careful with the...
0:19:35 > 0:19:37- 'He has a routine each evening?- Yes.
0:19:37 > 0:19:40'Same routine every evening. He comes in from school
0:19:40 > 0:19:43'and the computer is the first thing that goes on.
0:19:43 > 0:19:45- 'And then bed?- Bed at nine.
0:19:45 > 0:19:47'Er...nine to quarter past,
0:19:47 > 0:19:51'and that's because I'm worn out by then. Because most 15 year olds'
0:19:51 > 0:19:53don't go to bed at quarter past nine,
0:19:53 > 0:19:57but you cannot tolerate... If I had this all the time,
0:19:57 > 0:20:01I won't hear the TV and we won't get any time out.
0:20:01 > 0:20:04- So is bed sleep?- Bed, he goes into bed, he's real...
0:20:04 > 0:20:07It's took many years to get him into a lovely routine.
0:20:07 > 0:20:10If we're really lucky, he may sleep till six or seven.
0:20:10 > 0:20:13But that is a one-off and it doesn't happen that often.
0:20:16 > 0:20:18Tony will always have autism and, in his case,
0:20:18 > 0:20:21he will always need full-time care.
0:20:21 > 0:20:23For the last 15 years,
0:20:23 > 0:20:27Lainey has looked after him almost singlehandedly.
0:20:27 > 0:20:29At times, it is a 24-hour-a-day job.
0:20:29 > 0:20:34She now feels she may have to consider Tony moving into full-time residential care.
0:20:36 > 0:20:38- Tony's always been a biter.- Right.
0:20:38 > 0:20:40OK? And it's well documented -
0:20:40 > 0:20:43he's bit many school staff, children and support workers.
0:20:43 > 0:20:46You know, when he becomes frustrated,
0:20:46 > 0:20:49as long as you can keep the anxiety levels low
0:20:49 > 0:20:51and nothing upsets the routine,
0:20:51 > 0:20:52we can keep the behaviour down.
0:20:52 > 0:20:55It doesn't... I mean, the potential and the risk is always there.
0:20:55 > 0:20:56Love you! Night-night!
0:21:00 > 0:21:02Good night.
0:21:02 > 0:21:03Cheese!
0:21:05 > 0:21:09UPBEAT MUSIC
0:21:16 > 0:21:20The autistic spectrum encompasses a wide range of symptoms and severity.
0:21:20 > 0:21:23In a different area of the spectrum
0:21:23 > 0:21:27are people with well-developed cognitive and language skills,
0:21:27 > 0:21:31but who can still struggle with the complexities of social situations.
0:21:31 > 0:21:33Michael Barton is 19
0:21:33 > 0:21:37and a 2nd-year Physics student at the University of Surrey.
0:21:39 > 0:21:42Well, I think university has been particularly good for me,
0:21:42 > 0:21:45because it's allowed me to focus on all of my strengths.
0:21:45 > 0:21:49At GCSE, I particularly know English was difficult.
0:21:49 > 0:21:53An example of which, I was given an exam paper
0:21:53 > 0:21:56and a question was to "discuss the humour in this passage."
0:21:56 > 0:22:00- Obviously, I didn't find it funny, so I wrote, "There isn't any." - Right.
0:22:00 > 0:22:03Well, now I know that that's not the correct answer,
0:22:03 > 0:22:06and I should have written a five-page essay or something.
0:22:06 > 0:22:08Because of Michael's autism,
0:22:08 > 0:22:11when he's confronted with social information,
0:22:11 > 0:22:13his brain works differently to mine.
0:22:13 > 0:22:15He struggles in social situations
0:22:15 > 0:22:20to understand other people's thoughts, feelings and emotions.
0:22:22 > 0:22:25What's really interesting to me is to think about
0:22:25 > 0:22:27what the differences might be between you and I.
0:22:27 > 0:22:29You know, how you see the world compared to me.
0:22:29 > 0:22:32Can you explain a little bit of that to me?
0:22:32 > 0:22:34Well, people on the autistic spectrum
0:22:34 > 0:22:38tend to think very logically and analytically about things.
0:22:38 > 0:22:41And I like to think of things in black and white, as the saying goes.
0:22:41 > 0:22:44And it's... I think it's a saying, because I'm not actually colour blind.
0:22:44 > 0:22:46HE LAUGHS
0:22:46 > 0:22:47Yeah, definitely a saying.
0:22:47 > 0:22:50- Yeah.- And what does that mean, sort of logically,
0:22:50 > 0:22:52can you give me some examples?
0:22:52 > 0:22:55Well, a good example is the fact that I study physics
0:22:55 > 0:22:58because I have a very mathematical mind,
0:22:58 > 0:23:00and I'm very good at mental addition, for example.
0:23:00 > 0:23:03But I struggled at English GCSE
0:23:03 > 0:23:06and I found it very difficult
0:23:06 > 0:23:09to socialise with people when I was younger.
0:23:12 > 0:23:15At the Institute of Psychiatry at King's College, London,
0:23:15 > 0:23:18Dr Francesca Happe is an expert on people with autism.
0:23:18 > 0:23:20..Saying hello, letting him in...
0:23:20 > 0:23:22'So one of the things that autism is really teaching us
0:23:22 > 0:23:25'is that social intelligence, if you want to call it that,'
0:23:25 > 0:23:29and intellectual ability are very different things.
0:23:29 > 0:23:32And you can have an individual who is absolutely brilliant
0:23:32 > 0:23:34in terms of their intellect,
0:23:34 > 0:23:37in terms of their ability to understand the non-social world,
0:23:37 > 0:23:41but socially, is so handicapped, so limited, and has to, as you say,
0:23:41 > 0:23:47work so hard to manage even a little bit of neuro-typical life.
0:23:47 > 0:23:51It's as if you were living in a completely different country
0:23:51 > 0:23:52where you don't speak the language
0:23:52 > 0:23:56and all the time, you're struggling to read the signs to know how you should behave,
0:23:56 > 0:24:00to try and interpret what people are saying.
0:24:00 > 0:24:04To better understand how differently Michael might process a typical social situation,
0:24:04 > 0:24:08I wanted to try my own experiment.
0:24:08 > 0:24:13'I love art and, in particular, portraiture.
0:24:13 > 0:24:16'As a psychologist, I am fascinated how an artist
0:24:16 > 0:24:19'can capture someone's character in a painting,
0:24:19 > 0:24:23'to convey the story of their lives in an instant.
0:24:23 > 0:24:27'I wanted to show Michael my favourite painting
0:24:27 > 0:24:32'and see how it affected him, if he saw the same things as I did.
0:24:32 > 0:24:35'I couldn't quite believe the face,
0:24:35 > 0:24:37'this little girl that was looking out at me.
0:24:37 > 0:24:41'I suppose the fact that I am working so often with children and their families,
0:24:41 > 0:24:43'I am always looking for the emotional content
0:24:43 > 0:24:46'in whatever the situation is.
0:24:46 > 0:24:49'But I think that's something that speaks to me in her, in the eyes,
0:24:49 > 0:24:51'in the way that she's looking at me.
0:24:51 > 0:24:54'Because that's what most people are like, we're sociable beings.
0:24:54 > 0:24:58'And even though she's standing there on her own,'
0:24:58 > 0:25:00it feels like you could strike up a conversation with her
0:25:00 > 0:25:04and that her emotions would become more obvious.
0:25:04 > 0:25:07'Obviously, I see the girl just staring at us.
0:25:07 > 0:25:11'It's quite a prominent, blank kind of stare.
0:25:11 > 0:25:13'There's just absolutely no emotion whatsoever,
0:25:13 > 0:25:16'she's just staring right at you.'
0:25:16 > 0:25:18Any thoughts that she might have?
0:25:18 > 0:25:21I mean, does it say anything to you in that sense?
0:25:21 > 0:25:26Um... No, really. It just seems like a blank face just looking at me.
0:25:26 > 0:25:30'I found Michael's reaction to the painting quite interesting,'
0:25:30 > 0:25:34that actually, he wasn't drawn in the same way as I was to the face,
0:25:34 > 0:25:36to find something that spoke to me.
0:25:36 > 0:25:38I think that most people do try and put a story
0:25:38 > 0:25:41to whatever they're seeing, whatever they're doing.
0:25:41 > 0:25:44They try to make it make sense to them.
0:25:44 > 0:25:47So to not have that, to have the absence of that,
0:25:47 > 0:25:48is quite a curious thing for me,
0:25:48 > 0:25:52because it's not the way in which I ever think.
0:25:52 > 0:25:55You know, I'm always thinking about
0:25:55 > 0:25:57what might be in somebody else's mind.
0:25:57 > 0:26:02'Michael doesn't seek complicated motivations or intentions the way I do.
0:26:02 > 0:26:05'He can't read the emotions that might be conveyed
0:26:05 > 0:26:06'by the girl in the painting.
0:26:06 > 0:26:11'His brain processes that social information differently.
0:26:18 > 0:26:21'Difficulty understanding other people's minds
0:26:21 > 0:26:23'might also explain why people with autism
0:26:23 > 0:26:27'struggle with the complexities of the English language.
0:26:27 > 0:26:31'Michael has just published a book to explain idioms and metaphors
0:26:31 > 0:26:33'to other people with autism.'
0:26:35 > 0:26:37Here we have my book, 'It's Raining Cats And Dogs',
0:26:37 > 0:26:39written and illustrated by me.
0:26:39 > 0:26:42And I think we'll go with this first example -
0:26:42 > 0:26:45it's raining cats and dogs, which is an example of a classic idiom.
0:26:45 > 0:26:50You cannot possibly get any meaning from the actual expression itself.
0:26:50 > 0:26:52Have you got a favourite?
0:26:52 > 0:26:56Well, I like quite a few of them, but I particularly like this one -
0:26:56 > 0:26:57you're pulling my leg.
0:26:57 > 0:27:00Because, obviously, when you say, "You're pulling my leg,"
0:27:00 > 0:27:02you're joking about something.
0:27:02 > 0:27:05However, this wasn't how I thought of it, and I thought,
0:27:05 > 0:27:08"Well, I wouldn't really want someone to be pulling my leg
0:27:08 > 0:27:10"if they were joking about something."
0:27:10 > 0:27:12- It wouldn't feel like a joke?- No.
0:27:12 > 0:27:17But how important was it to sort of do that translation visually,
0:27:17 > 0:27:18you know, to put something together?
0:27:18 > 0:27:23- I think it was extremely important because most people on the spectrum are visual learners.- Yeah.
0:27:23 > 0:27:28- And, therefore, they can use the picture to help interpret the phrase.- Mm.
0:27:28 > 0:27:30I think, when talking to people on the spectrum,
0:27:30 > 0:27:33it's very important to say exactly what you mean
0:27:33 > 0:27:35so that they understand it.
0:27:35 > 0:27:39I know it doesn't sound like much, but it can make a huge difference.
0:27:40 > 0:27:44I know, it sounds to me as if you've got quite a sort of positive take
0:27:44 > 0:27:47on, you know, the sort of person that you are.
0:27:47 > 0:27:51Well, I've always thought that having a diagnosis was a positive thing.
0:27:51 > 0:27:55I've always been encouraged to go out there and do something about my weaknesses
0:27:55 > 0:27:58so that they may even become my strengths some day.
0:27:58 > 0:28:00And, as I've shown with my book,
0:28:00 > 0:28:03I'm an international author at the age of 19,
0:28:03 > 0:28:06despite really struggling with my English GSCE.
0:28:06 > 0:28:09I bet my English teacher would never have dreamed of that.
0:28:09 > 0:28:12THEY LAUGH
0:28:12 > 0:28:15So far, we've met people from different areas of the spectrum.
0:28:15 > 0:28:19Both have wildly different symptoms, but share common features.
0:28:19 > 0:28:25For instance, that their brains process social information differently.
0:28:25 > 0:28:29Although autism is incurable, there are many therapies that can help,
0:28:29 > 0:28:34and it is likely the earlier the intervention, the better.
0:28:34 > 0:28:39As autism cannot yet be diagnosed by a biological test,
0:28:39 > 0:28:43diagnosis is a complex and protracted process of behavioural observation.
0:28:45 > 0:28:49On the surface, a child may appear to be acting like any other
0:28:49 > 0:28:53so often has to be observed over a number of months, years even,
0:28:53 > 0:28:56before a reliable assessment can be made.
0:28:56 > 0:29:00For families, this can be a very traumatic process.
0:29:00 > 0:29:04Mandy and Jason Clarke, in Leicester, have two sons.
0:29:04 > 0:29:09Jake, aged six, and Zaine, aged four-and-a-half.
0:29:12 > 0:29:15Jake was diagnosed with autism at age three.
0:29:25 > 0:29:28Take me back a little bit, take me back to the beginning with Jake.
0:29:28 > 0:29:32What are your earliest memories of him as a baby?
0:29:32 > 0:29:3514, 15 months, it was really clear,
0:29:35 > 0:29:39because, at first, he would point at things, but say, "Dat, dat,"
0:29:39 > 0:29:42not build the sentences on words.
0:29:42 > 0:29:45He said, "Dat."
0:29:45 > 0:29:49Um...but then, things quite rapidly... He regressed, didn't he?
0:29:49 > 0:29:52And he wouldn't sleep in his own room.
0:29:52 > 0:29:56We thought maybe the shadows from toys, you'd put little night lights there
0:29:56 > 0:29:59and all the typical things - the singing, changing bottoms,
0:29:59 > 0:30:03nothing worked and, like, he would just scream, scream, scream and not sleep.
0:30:03 > 0:30:05And I mean not sleep.
0:30:05 > 0:30:08- He'd doze through the night. - So he'd catnap, almost.- Yes.- Right.
0:30:08 > 0:30:11And that was the biggest thing, knowing something wasn't...
0:30:11 > 0:30:14could be affecting his behaviour during the day,
0:30:14 > 0:30:17so that's why we didn't do anything, take him to the GP, for instance,
0:30:17 > 0:30:20because we thought, "Well, maybe that's affecting
0:30:20 > 0:30:23"why he doesn't want to go out, doesn't want to do anything."
0:30:23 > 0:30:25'So you were trying to make sense of his behaviour.
0:30:25 > 0:30:29'So he wasn't sleeping very well at night
0:30:29 > 0:30:32'and that might explain his behaviour during the day.
0:30:32 > 0:30:34'But it sounds as if he was a boy'
0:30:34 > 0:30:36who was communicating in his own way
0:30:36 > 0:30:40and initially, that didn't alert you to feeling concerned?
0:30:40 > 0:30:44No, I thought he was just different, doing things differently.
0:30:44 > 0:30:47You know, you can't compare each child you've had.
0:30:47 > 0:30:48No, because they're all individuals,
0:30:48 > 0:30:51so we thought, maybe he's just doing things his own way.
0:30:51 > 0:30:52Fuck you!
0:30:52 > 0:30:55Jake, that's inappropriate, sweetheart.
0:30:55 > 0:30:59Unlike Tony Miller, Jake is in a mainstream primary school.
0:30:59 > 0:31:03His form of autism means he can function in general society,
0:31:03 > 0:31:06but it is a huge strain on both him and his family.
0:31:09 > 0:31:12Think of a child with autism in a mainstream school
0:31:12 > 0:31:15and the teacher's saying, "John, look at me when I'm talking to you!"
0:31:15 > 0:31:18And the poor child, now they have to look at this face,
0:31:18 > 0:31:21try and interpret what the hell all this information in the face is,
0:31:21 > 0:31:24as well as listening to the intonation and the actual words
0:31:24 > 0:31:27and the fact that neuro-typicals don't say what they mean,
0:31:27 > 0:31:31so she's going to say, you know, "hop to it" or "lend me a hand,"
0:31:31 > 0:31:35or so many things that literally don't make any sense.
0:31:35 > 0:31:38A common symptom amongst children with autism
0:31:38 > 0:31:43can be sudden mood swings, bursts of extreme aggression.
0:31:43 > 0:31:45'And for a child in a mainstream school,
0:31:45 > 0:31:49frustration could well be made worse by having to act "normal."
0:31:49 > 0:31:52It does seem to be a real sense of their frustration that,
0:31:52 > 0:31:55you know, almost as if they're in a glass box
0:31:55 > 0:31:57and then they can't let you know what's going on.
0:31:57 > 0:32:01So I think that the anger and frustration in autism
0:32:01 > 0:32:05come about, of course, from lack of understanding on both sides.
0:32:05 > 0:32:07You can see a problem with translation.
0:32:07 > 0:32:09Er...they can't read our minds,
0:32:09 > 0:32:12but we're also having difficulty seeing how THEY view the world.
0:32:12 > 0:32:15And that frustration that builds up,
0:32:15 > 0:32:17often from problems of communication
0:32:17 > 0:32:20and, of course, the anxiety and the frustration go hand in hand.
0:32:20 > 0:32:24When we're really frightened, you know, we can run away or we can fight.
0:32:24 > 0:32:26And some children with autism are fighting for their lives.
0:32:26 > 0:32:30And, of course, that's just layering upon layering their frustration.
0:32:30 > 0:32:33Yeah, and what happens often is that the poor families get it,
0:32:33 > 0:32:36because the child has been maybe at school
0:32:36 > 0:32:39and they've been keeping a lid on their behaviour
0:32:39 > 0:32:42and they've managed to do that act of acting neuro-typical
0:32:42 > 0:32:43and it's cost them hard,
0:32:43 > 0:32:46they come in through the door and THEN they explode
0:32:46 > 0:32:47and the mum gets it all.
0:32:47 > 0:32:49I don't want to take my shoes off!
0:32:49 > 0:32:51- Well, you need to take your shoes off.- Fuck off!
0:32:51 > 0:32:54- Now, stop swearing.- Aaah! - Why can't you take your shoes off?
0:32:54 > 0:32:56I don't want to!
0:32:56 > 0:32:59Well, I'll help you. Now, there's no need for that.
0:32:59 > 0:33:02Jake, get your trousers off.
0:33:02 > 0:33:04Jake, can you...?
0:33:04 > 0:33:07'When he overloads and it all gets too much,'
0:33:07 > 0:33:11and he'll start lashing out and throwing, screaming and shouting,
0:33:11 > 0:33:13'just trying to make sense of it all...'
0:33:13 > 0:33:15Are you going to get changed, Jake?
0:33:15 > 0:33:17- Are you going to get changed? - Fuck off!- Stop swearing.
0:33:17 > 0:33:19Fuck off, fuck off, fuck off!
0:33:19 > 0:33:22That's the difficult bit, to try and hold it together for the rest of the family.
0:33:22 > 0:33:24Jake, Jake, Jake!
0:33:24 > 0:33:28Jake! Jake, let go! Jake!
0:33:28 > 0:33:30SHE MOANS
0:33:30 > 0:33:32Jake, sit down.
0:33:32 > 0:33:33Sit down, Jake.
0:33:35 > 0:33:36Listen...
0:33:36 > 0:33:39'Autism is not an excuse for bad behaviour, you know.
0:33:39 > 0:33:43'We're trying to say that you need to control, we all have to control out temper.
0:33:43 > 0:33:45'We could all put our fists through a wall from time to time,'
0:33:45 > 0:33:48but, you know, it's how, when and where.
0:33:48 > 0:33:50I fuckin' hate it!
0:33:50 > 0:33:51HE SCREAMS
0:33:51 > 0:33:53Can you slow him down though?
0:33:53 > 0:33:56Do you think he knows that you're trying to understand?
0:33:56 > 0:33:59'More so.
0:33:59 > 0:34:01'We talk to him, make things simplistic,
0:34:01 > 0:34:03'but he knows everything that's going on
0:34:03 > 0:34:06'so he's not wound up about them or stressed out.
0:34:09 > 0:34:12'It's a strange area when your son said to you,'
0:34:12 > 0:34:14"Well, what's going to happen to me when you die?"
0:34:14 > 0:34:17So I said to Jake, "Well, we have a lovely family."
0:34:17 > 0:34:21"OK, then." But no emotion, after anything else.
0:34:21 > 0:34:26I said, "But I'm going to be here for a long time. So that's OK."
0:34:26 > 0:34:29But there's no...real feeling.
0:34:31 > 0:34:33Owing to the genes they share,
0:34:33 > 0:34:37it's now generally accepted that the brothers and sisters of children with autism
0:34:37 > 0:34:41have a higher risk of having the condition themselves,
0:34:41 > 0:34:44possibly as high as 18%.
0:34:44 > 0:34:48Mandy and Jason are now worried that Jake's younger brother Zaine
0:34:48 > 0:34:52is also exhibiting distressing symptoms.
0:34:54 > 0:34:56Five minutes.
0:34:56 > 0:34:58No, this is not our room.
0:34:58 > 0:35:02Zaine has just moved from nursery to a mainstream primary school.
0:35:02 > 0:35:06According to Mandy, every day, he is getting more and more anxious
0:35:06 > 0:35:10because he has to cope with interacting with lots of new children.
0:35:10 > 0:35:15- Are you looking forward to school today? Yeah!- No!
0:35:15 > 0:35:18No? Oh, why's that?
0:35:18 > 0:35:19Tell me why you don't like school!
0:35:25 > 0:35:27You can't do with all the school. OK.
0:35:31 > 0:35:33Do you?
0:35:33 > 0:35:34What do they say to you?
0:35:36 > 0:35:37You don't like the people. OK, OK.
0:35:37 > 0:35:40Don't get upset. Listen. Calm down, listen.
0:35:40 > 0:35:43The people want to be your friends.
0:35:48 > 0:35:49- You're sure about that?- Yes.
0:35:49 > 0:35:53Have you thought about going up to them and saying, "Hi! Can I play?"
0:35:53 > 0:35:55You don't think of saying that?
0:35:57 > 0:35:58You like what?
0:35:59 > 0:36:02Oh, why don't you say to the kids, Zaine,
0:36:02 > 0:36:04"Can I play? Can I play?"
0:36:06 > 0:36:08So tell me about Zaine
0:36:08 > 0:36:11and when you started to have some worries about his development.
0:36:11 > 0:36:14But it was again about the 14th, 15th month bit
0:36:14 > 0:36:19where he'd do things that were totally off the wall for no reason,
0:36:19 > 0:36:22like the banging the head on the floor.
0:36:22 > 0:36:25His elder brother didn't do that, but he would do it.
0:36:25 > 0:36:28And there are people that would say, "Well, let him do it,
0:36:28 > 0:36:31"and then if it hurts, he'll stop," but he didn't stop.
0:36:31 > 0:36:34- A much higher pain threshold. - That's right.
0:36:34 > 0:36:38'A lower sensitivity to pain or heat or cold can be a symptom of autism,
0:36:38 > 0:36:43'another sign the brain is processing sensory information differently.'
0:36:47 > 0:36:48Three minutes and coat time...
0:36:57 > 0:37:01And his behaviours were different, very different from his brother's, what he was doing.
0:37:01 > 0:37:05Were there any sort of typical autistic-type behaviours
0:37:05 > 0:37:08that you, looking back now, you can think, OK?
0:37:08 > 0:37:11- Head shaking, a lot of head shaking. - Yeah, just the...
0:37:11 > 0:37:15- Really, really aggressively shaking it from side to side.- Side to side.
0:37:15 > 0:37:16They both did that, didn't they?
0:37:16 > 0:37:19They did both do that, but the eyes were somewhere else
0:37:19 > 0:37:22when they were doing it.
0:37:26 > 0:37:27Why not?
0:37:30 > 0:37:31Zaine!
0:37:31 > 0:37:33CAR TYRES SQUEAL
0:37:33 > 0:37:35Sorry!
0:37:35 > 0:37:37Listen, you could have got run over, sweetheart.
0:37:37 > 0:37:40You know this is a main road and...
0:37:40 > 0:37:42All right, sweetheart, listen...
0:37:42 > 0:37:45'You blame yourself, you go through a process of,
0:37:45 > 0:37:47'"What have I done wrong? Why is my child'
0:37:47 > 0:37:50"not responding in a typical way
0:37:50 > 0:37:52"that you would expect from what I'm doing?"
0:37:52 > 0:37:54We like school!
0:37:54 > 0:37:56We do, once we're there!
0:37:56 > 0:37:59There are lots of children who've got a bit of a tummy wobble.
0:37:59 > 0:38:01They're a little bit nervous, it's their first day.
0:38:03 > 0:38:07All right. But, listen, then they make friends.
0:38:07 > 0:38:10And they do lots of good lessons.
0:38:10 > 0:38:12What do you hate about it, Zaine?
0:38:15 > 0:38:17The people. Well...
0:38:19 > 0:38:21Too noisy. OK, shall we let them go in?
0:38:23 > 0:38:25- Now, listen. Listen.- No!
0:38:28 > 0:38:29'Mandy and Jason now feel that
0:38:29 > 0:38:33'in order to get the best support and care for Zaine,
0:38:33 > 0:38:35'they need to start the difficult process
0:38:35 > 0:38:36'of having him formally diagnosed.'
0:38:39 > 0:38:42So the diagnosis for Jake opened...
0:38:42 > 0:38:45I mean, obviously, it had its impact, but it opened some doors.
0:38:45 > 0:38:48It's the best thing that ever happened to us, personally,
0:38:48 > 0:38:52because for the family, we could deal... We knew what it was,
0:38:52 > 0:38:54we can move on, work with it and move on.
0:38:54 > 0:38:57- And you had an explanation. - That's right.
0:38:57 > 0:39:00And I suppose, in some ways, that the beginning of an understanding
0:39:00 > 0:39:03that all of the, well, I don't know,
0:39:03 > 0:39:06everything you'd seen in your little boy
0:39:06 > 0:39:09could be thought about in a different way.
0:39:09 > 0:39:12- Definitely, definitely.- Yeah.
0:39:14 > 0:39:16Yeah.
0:39:16 > 0:39:18- You all right?- Yeah.
0:39:18 > 0:39:22That's strange, because we don't go back there, we never look back,
0:39:22 > 0:39:23we go forward.
0:39:25 > 0:39:29I think Jake's future is more positive than Zaine's.
0:39:29 > 0:39:32- Right.- Because we don't know where we're going with Zaine
0:39:32 > 0:39:36and how to support him and what to do to help his future,
0:39:36 > 0:39:37to reach his full potential.
0:39:37 > 0:39:41- We don't know what his potential is...- As yet.- ..as yet.
0:39:41 > 0:39:43I'll give you a hand, I'll give you a hand.
0:39:54 > 0:39:56At Birkbeck College in London,
0:39:56 > 0:40:00scientists are now engaged in the most comprehensive long-term study
0:40:00 > 0:40:02of the brothers and sisters of children with autism
0:40:02 > 0:40:04who, because of their genes,
0:40:04 > 0:40:08are known to be at a higher risk of developing the condition.
0:40:08 > 0:40:12They are conducting a wide variety of tests
0:40:12 > 0:40:15to try and discover new clear biomarkers,
0:40:15 > 0:40:18specific physical differences
0:40:18 > 0:40:20between autistic and non-autistic children
0:40:20 > 0:40:23that will make future diagnosis of autism much earlier and easier.
0:40:28 > 0:40:31One of their studies involves making recordings
0:40:31 > 0:40:35of the electrical activity of brains in babies as young as eight months old.
0:40:35 > 0:40:38The babies are shown various pictures and sounds
0:40:38 > 0:40:41to test how they respond to any variation.
0:40:43 > 0:40:46So what happens here is that we try to, um...
0:40:46 > 0:40:48bore the brain, or habituate it
0:40:48 > 0:40:50to repeated sounds, then we expect,
0:40:50 > 0:40:53because it gets bored, that when a new sound comes in,
0:40:53 > 0:40:55they will notice the difference.
0:40:55 > 0:40:58MACHINE BEEPS
0:41:00 > 0:41:04And what we see, um, in the babies at risk for autism
0:41:04 > 0:41:08is that they are always alert,
0:41:08 > 0:41:10they don't habituate,
0:41:10 > 0:41:13and that's why when something changes,
0:41:13 > 0:41:15they don't notice that change as well.
0:41:15 > 0:41:18- Cos they're always in a high state of alert.- Always, yeah.
0:41:18 > 0:41:22'The Birkbeck team have found very subtle differences
0:41:22 > 0:41:26'in the way the babies at higher risk of autism respond to these sounds
0:41:26 > 0:41:28'to those who are not.'
0:41:28 > 0:41:30So this is giving us a real opportunity
0:41:30 > 0:41:32to push things right back to their beginning.
0:41:32 > 0:41:34Exactly, wouldn't it be wonderful?
0:41:40 > 0:41:42So, basically, what Kim is trying to do is, um...
0:41:42 > 0:41:45to prompt Noah to, er, play with her,
0:41:45 > 0:41:49to connect with her, to maintain eye contact,
0:41:49 > 0:41:52to focus together on a joint activity.
0:41:52 > 0:41:54Um, and this is one of the key skills that we think
0:41:54 > 0:41:57help children develop these amazing set of skills
0:41:57 > 0:41:59over the first few years of life.
0:41:59 > 0:42:03And things like language and several other parts of cognition
0:42:03 > 0:42:07that depend, depend on their ability to learn from other people.
0:42:07 > 0:42:10So a way of looking at his behaviour?
0:42:10 > 0:42:13- Yes, exactly. - Alongside some of the other experiments that you're doing here?
0:42:13 > 0:42:16Yes. Yes, so it's absolutely critical for our project
0:42:16 > 0:42:20that, um, when we see some changes at the level of brain development
0:42:20 > 0:42:22when we're in these artificial laboratory settings,
0:42:22 > 0:42:27that we're able to tie this back to something that's actually more real
0:42:27 > 0:42:30in the child's environment and their relationship with others.
0:42:30 > 0:42:34'This extraordinary study hopes to run for the next five years.
0:42:34 > 0:42:38'It aims to build up the most comprehensive set of data
0:42:38 > 0:42:41'about the siblings of children with autism,
0:42:41 > 0:42:44'and, hopefully, to come up with a new set of early markers
0:42:44 > 0:42:47'to enable doctors to spot autism,
0:42:47 > 0:42:52'at least in at-risk children, as soon as possible after birth.'
0:42:54 > 0:42:56This is exactly what makes these studies so powerful,
0:42:56 > 0:43:01that it's sort of this natural history of the child that we're following.
0:43:07 > 0:43:09For the past eight months,
0:43:09 > 0:43:11Tony Miller has been spending a few days each month
0:43:11 > 0:43:15at a publicly funded residential care home, Flexicare,
0:43:15 > 0:43:17to allow Lainey time on her own
0:43:17 > 0:43:20and to see whether it might provide a solution
0:43:20 > 0:43:23to the problem of Tony's long-term care.
0:43:23 > 0:43:26Lainey is preparing him for this major change.
0:43:28 > 0:43:29Tony!
0:43:29 > 0:43:31Tony listening? You want to come and see?
0:43:31 > 0:43:33No!
0:43:33 > 0:43:34Tony!
0:43:34 > 0:43:38Tony listening. Come over here.
0:43:38 > 0:43:43Tony. Good boy, good boy. Come here, come and see Mummy.
0:43:43 > 0:43:46Well done, let Mummy show you social story.
0:43:46 > 0:43:49Headphones off. That's good listening.
0:43:49 > 0:43:51Come round here. Come and have a look.
0:43:51 > 0:43:55OK, look at Tony's diary. OK?
0:43:55 > 0:43:59OK. Now, tomorrow... Tomorrow, which is Friday,
0:43:59 > 0:44:02Tony is going into Flexicare.
0:44:02 > 0:44:08So we have blue, Flexi, pink for school, yellow for home.
0:44:08 > 0:44:14And tomorrow, Tony is going into Flexicare...
0:44:14 > 0:44:16Yeah?
0:44:16 > 0:44:18..for eight sleeps.
0:44:18 > 0:44:22School on Monday, school. And then...
0:44:22 > 0:44:25Tony comes home...
0:44:25 > 0:44:28Looking... Home.
0:44:28 > 0:44:29Yeah?
0:44:31 > 0:44:32..on Sunday.
0:44:34 > 0:44:36- Is that good, Tony?- Yes.
0:44:36 > 0:44:37Tony listening?
0:44:40 > 0:44:43- Want to see? You want to see? - No see.- No see?
0:44:46 > 0:44:50- How much of that has registered? - Mmm.- I think he's took some in.
0:44:50 > 0:44:52- No, I think he did. - Yeah, he's done well.
0:44:59 > 0:45:01'So something different lies ahead.
0:45:01 > 0:45:04'For me, yes, and for all of us, for all of us, it is...
0:45:04 > 0:45:07'And the dynamics of the family will change...and Tony will change,
0:45:07 > 0:45:09'he's growing up.
0:45:09 > 0:45:12'He's trying to tell me, in his non-communicative world,'
0:45:12 > 0:45:16"I don't want you around, Mum, I want my friends," which is normal.
0:45:18 > 0:45:20Good waiting, Tony!
0:45:21 > 0:45:25'When he was younger, I was probably just the object to him.
0:45:25 > 0:45:27'For whatever he wanted, or what he needed.'
0:45:27 > 0:45:31Wow! And it's... Oh, no...
0:45:31 > 0:45:34'I really had to work hard with him, to get him to...
0:45:34 > 0:45:36'that I'm Mum, I am a person.
0:45:36 > 0:45:40'Now he understands. It's took a long time, but now he understands.
0:45:40 > 0:45:42'But it's took me 15 years.'
0:45:42 > 0:45:45Pull the string, like Mummy showed you. Pull the string.
0:45:47 > 0:45:50Good boy, here it goes.
0:45:50 > 0:45:51Hold your string.
0:45:51 > 0:45:55Woah! Run, Tony, run!
0:45:55 > 0:45:58HE SCREAMS
0:46:05 > 0:46:09'It doesn't matter, once Tony's placed,'
0:46:09 > 0:46:13if I get killed in a car crash next week, he's fine.
0:46:22 > 0:46:27- That's it, keep tucking. - It's very high, isn't it? Very high!
0:46:27 > 0:46:29- There you go!- Wow!
0:46:29 > 0:46:32Come on!
0:46:32 > 0:46:35'You're searching to bring that child back,'
0:46:35 > 0:46:38back to you, whether it's, you know, emotionally, psychologically,
0:46:38 > 0:46:41you're having to do it to bring it back
0:46:41 > 0:46:44and it does take an awful lot of time.
0:46:46 > 0:46:48HE SCREAMS
0:46:48 > 0:46:50It's OK. Listening. What's the matter?
0:46:50 > 0:46:52What does Tony want?
0:46:52 > 0:46:53What does Tony want?
0:46:53 > 0:46:56- Home.- Home. You want to go home?- Yeah.
0:46:56 > 0:47:00- Tony finished?- Finished.- OK.
0:47:00 > 0:47:03OK, let's get your kite, get your kite. Wrap it up.
0:47:03 > 0:47:05Wrap it up.
0:47:13 > 0:47:15It's the day of Zaine Clarke's assessment.
0:47:15 > 0:47:18Mandy and Jason are taking him to Purley, in Surrey,
0:47:18 > 0:47:21to see a private clinical psychologist
0:47:21 > 0:47:24who specialises in diagnosing children with autism.
0:47:29 > 0:47:33Dr Amitta Shah will spend the day observing Zaine
0:47:33 > 0:47:37and talking with Mandy and Jason about his developmental history.
0:47:37 > 0:47:41She and the family have agreed that I can observe the process.
0:47:41 > 0:47:45It is the first time in the UK that it has ever been filmed.
0:47:47 > 0:47:49Which one do you think it might be?
0:47:51 > 0:47:55Dr Shah has collected all the previous reports made on Zaine
0:47:55 > 0:47:59by various doctors, paediatricians and his school.
0:47:59 > 0:48:01She has also viewed all the videos
0:48:01 > 0:48:03Mandy and Jason have made of his behaviour.
0:48:07 > 0:48:09She must weigh up all the evidence
0:48:09 > 0:48:12before she can make a proper diagnosis.
0:48:14 > 0:48:17What happened at about a year? That's when you first felt, "Oh..."
0:48:17 > 0:48:21Yeah, he began to scream and cry a lot.
0:48:21 > 0:48:23And could you establish reasons for that, or...?
0:48:23 > 0:48:24No.
0:48:24 > 0:48:26Has he had a real regression,
0:48:26 > 0:48:29a setback, you know, has he, did he start talking
0:48:29 > 0:48:32and then he stopped talking, or did he...?
0:48:32 > 0:48:35- He did it with food.- With food? - I noticed with the way he was eating.- Yeah.
0:48:35 > 0:48:39- His skills were very, very good from the high chair, from the fingers. - Yeah.
0:48:39 > 0:48:40Progressing with, you know, the cutlery.
0:48:40 > 0:48:44And then he seemed to go back and he became very clumsy.
0:48:44 > 0:48:47Oh, interesting. What age did he go clumsy?
0:48:47 > 0:48:49About 14 months on.
0:48:49 > 0:48:52Where do you live?
0:48:52 > 0:48:57- I live in England.- In England? But what place in England, do you know?
0:48:57 > 0:48:59I think I live in...
0:48:59 > 0:49:02- A very nice place. - Do you go out and play?
0:49:02 > 0:49:06Yeah, in my house, sometimes...
0:49:09 > 0:49:12'Dr Shah's assessment is based on the internationally accepted
0:49:12 > 0:49:17'Diagnostic Interview for Social and Communication Disorders,
0:49:17 > 0:49:21'a specially designed informal interview that helps her build
0:49:21 > 0:49:24'a detailed picture of Zaine's abilities,
0:49:24 > 0:49:28'problems and atypical behaviour from birth till now.'
0:49:28 > 0:49:31Oh, it's going to come back to me, is it?
0:49:31 > 0:49:35'She will also make direct observations of Zaine's behaviour
0:49:35 > 0:49:38'both as he plays and performs various specialised tasks.'
0:49:40 > 0:49:43You've seen him, haven't you, Laverne?
0:49:43 > 0:49:46What situation did you see?
0:49:46 > 0:49:48He was on the climbing frame.
0:49:48 > 0:49:50And I think, from a distance,
0:49:50 > 0:49:54it looked like he was playing with the other children,
0:49:54 > 0:49:57but, actually, he was chattering away to himself or ordering them around.
0:49:57 > 0:50:00From a distance, it looks as if he's playing alongside and...
0:50:00 > 0:50:02- Yeah.- ..interacting, but...
0:50:02 > 0:50:04When you look closely...
0:50:04 > 0:50:06- You hear him talking. - You hear him talking.
0:50:06 > 0:50:09- You hear him telling other children what to do.- What to do.
0:50:09 > 0:50:11'Dr Shah is trying to assess
0:50:11 > 0:50:14'whether Zaine's behaviour falls on the autistic spectrum.
0:50:14 > 0:50:17'She needs to be sure that this isn't related
0:50:17 > 0:50:19'to other problems in his life.
0:50:19 > 0:50:23'She is looking for anything that suggests impairment
0:50:23 > 0:50:26'of social interaction, language and imagination.'
0:50:26 > 0:50:28OK, are you warm, warm enough?
0:50:28 > 0:50:31Oh... Hello, you're running away!
0:50:31 > 0:50:33Zaine?
0:50:33 > 0:50:37- What's he like generally at home? Can he get quite moody?- Yeah...
0:50:37 > 0:50:40- Do his moods go up and down? - Yeah. Oh, mood swings. Yeah.
0:50:40 > 0:50:44- Is it, yeah?- At the drop of a hat, he will just kick off, he can kick off.
0:50:44 > 0:50:45I know it sounds really strange,
0:50:45 > 0:50:48but it's almost like he gets depressed.
0:50:48 > 0:50:51It's very strange and he said, "Bear's going to die,"
0:50:51 > 0:50:55and he'll cry real tears, real, real.
0:50:55 > 0:50:57- But is this just out of the blue? - Out of the blue.
0:50:57 > 0:50:59Nothing, nothing will console him until he comes out
0:50:59 > 0:51:02of this really, really low mood in his own time.
0:51:05 > 0:51:06At the end of the day,
0:51:06 > 0:51:09after she has spent several hours talking to Mandy and Jason
0:51:09 > 0:51:13and observing Zaine, Dr Shah is now ready to make her diagnosis.
0:51:17 > 0:51:19OK, OK. Mandy and Jason,
0:51:19 > 0:51:24I'm now going to give you some feedback from...
0:51:24 > 0:51:28what the assessment has shown us.
0:51:28 > 0:51:31It's not just based on today, but, as you know,
0:51:31 > 0:51:35I've had a lot of reports beforehand from the paediatrician.
0:51:35 > 0:51:38I've seen those DVDs, the films of Zaine.
0:51:38 > 0:51:41All those questions we asked you this morning.
0:51:41 > 0:51:45And then, of course, meeting Zaine himself has made it all
0:51:45 > 0:51:49very, very clear to us.
0:51:49 > 0:51:52You know, all his, all his early behaviours and, uh...
0:51:52 > 0:51:55all the, what is functioning now
0:51:55 > 0:51:58shows clearly that he is on the autistic spectrum
0:51:58 > 0:52:02and he fits into the sub-group of children
0:52:02 > 0:52:04who have Asperger's syndrome
0:52:04 > 0:52:06because of the quality of his social interaction.
0:52:06 > 0:52:11But what he is showing is very high intelligence
0:52:11 > 0:52:17and he's showing a lot of very normal sociability as well,
0:52:17 > 0:52:19which is very positive.
0:52:19 > 0:52:23And the difficulties are to do with his own frustrations
0:52:23 > 0:52:26because he is extremely intelligent.
0:52:26 > 0:52:30There are lots of people who have very satisfying lives
0:52:30 > 0:52:32and have a career, and so on.
0:52:32 > 0:52:36But the important thing is that with someone like Zaine,
0:52:36 > 0:52:40you know, the emotions are a little bit disarranged.
0:52:40 > 0:52:43And he, he can become anxious, he can become stressed.
0:52:43 > 0:52:45That's what we have to bear in mind,
0:52:45 > 0:52:50and actually make sure that life is arranged for him in such a way.
0:52:53 > 0:52:58So I think that's, uh, it's time for you to maybe...
0:52:58 > 0:53:01Do you want some time just to take it in?
0:53:01 > 0:53:04And then maybe we can have another chat in a few minutes, or, um...
0:53:04 > 0:53:06Just, it's a lot, isn't it?
0:53:06 > 0:53:09- Are you all right?- Yeah, I'm fine, yeah.- Are you OK?- Yeah.
0:53:11 > 0:53:15Zaine has been diagnosed with autism and having Asperger's syndrome.
0:53:15 > 0:53:20This means that, although his cognitive and linguistic skills are relatively well developed,
0:53:20 > 0:53:24he'll have significant difficulties in social interactions.
0:53:26 > 0:53:29'I was trying to hang on to not being emotional, I suppose.'
0:53:29 > 0:53:31Just having something clarified,
0:53:31 > 0:53:35- I was trying to hang on to keeping it all together, really...- Mmm.
0:53:35 > 0:53:38- Yeah. You know, thinking, this is it. - It was emotional.
0:53:38 > 0:53:41- It was an emotional... - It was really emotional.
0:53:41 > 0:53:44It's a long, exhausting road to get here.
0:53:44 > 0:53:47Yeah, and it's the beginning of something as well, isn't it?
0:53:47 > 0:53:49There might be a chance
0:53:49 > 0:53:53that everything will be typical in his world.
0:53:53 > 0:53:57Yeah, yeah. So it's time to move on with Zaine.
0:53:57 > 0:53:59- Yeah.- Who I think has had this day...- He's loved it.
0:53:59 > 0:54:02- Devoted to him. - Has he even known what's...?
0:54:02 > 0:54:04The attention's been amazing, he's loved it,
0:54:04 > 0:54:07Well, thank you. I mean, I do feel, you know,
0:54:07 > 0:54:09there I was sitting on the edge of it,
0:54:09 > 0:54:11not going through it with you but, you know,
0:54:11 > 0:54:14having my own emotional response to it, but, um...
0:54:14 > 0:54:17I'm very pleased that we have some answers.
0:54:17 > 0:54:21- Thank you.- OK.- Brilliant, thank you.
0:54:21 > 0:54:24I'm all right now.
0:54:24 > 0:54:28I'm all right till she... She has a way, Laverne has a way.
0:54:30 > 0:54:32If you include the wider families,
0:54:32 > 0:54:37autism affects the lives of over two million people in the UK every day.
0:54:37 > 0:54:43At its most severe, it is a serious, lifelong and disabling condition.
0:54:43 > 0:54:46Its effects are often hidden and, without the right care,
0:54:46 > 0:54:49it can have profound, sometimes devastating effects
0:54:49 > 0:54:52on individuals and their families.
0:54:52 > 0:54:55But, for others, like Michael and Zaine,
0:54:55 > 0:54:58autism needn't be a barrier to living a full life,
0:54:58 > 0:55:00just a different way of experiencing the world
0:55:00 > 0:55:04that we are only just beginning to understand and appreciate.
0:55:07 > 0:55:10'Where's the future going for Tony?
0:55:10 > 0:55:14'The future for Tony now is residential care.
0:55:14 > 0:55:18'We've had to choose it because, with puberty,
0:55:18 > 0:55:21'the behaviour's become really quite challenging.
0:55:21 > 0:55:25'Well, I need to let Tony go, so he can learn and progress, because...
0:55:25 > 0:55:28'all our children leave home, it's a natural process.
0:55:28 > 0:55:30'With Tony, we always knew, I knew from the age of two,
0:55:30 > 0:55:33'he was going to end up in residential care,
0:55:33 > 0:55:34'so it was very accepting.
0:55:34 > 0:55:37'And I always said that the day it became too much,
0:55:37 > 0:55:42'that it became too challenging and it became unmanageable,
0:55:42 > 0:55:46'I would really have to think about putting him into residential,
0:55:46 > 0:55:49'so it was a huge, huge decision.'
0:55:55 > 0:56:00Yeah, wow! Wow, here's Tony's new house!
0:56:00 > 0:56:02HE SCREAMS
0:56:09 > 0:56:13'What struck me was how peaceful and serene it is here.
0:56:13 > 0:56:17'You know, someone like Tony can come out and jump and flap'
0:56:17 > 0:56:19and scream for England and...
0:56:19 > 0:56:21the only people that are going to hear him are the cows.
0:56:21 > 0:56:25'And it's just so good, it's, you know, you've got this home here,
0:56:25 > 0:56:26'which is a four-bedded bungalow,
0:56:26 > 0:56:29'and Tony will be living with three other young people here
0:56:29 > 0:56:31'in the same age bracket, um...
0:56:31 > 0:56:33'Over there, you've got an education centre
0:56:33 > 0:56:35'and in there, they've got a lovely sensory room,
0:56:35 > 0:56:37'they've got a kitchen where'
0:56:37 > 0:56:38they'll be teaching Tony life skills
0:56:38 > 0:56:43and how to make sandwiches, and just be really independent of me.
0:56:45 > 0:56:49Remember Mummy loves you. I see you in eight days.
0:56:53 > 0:56:55No.
0:56:57 > 0:56:58Oh, no.
0:56:59 > 0:57:02'I know he's happy, this is the right thing, and, um...
0:57:02 > 0:57:08'There's a lot of adjustment to be doing for Tony, and for me...
0:57:08 > 0:57:11'But this is the right thing to do.
0:57:11 > 0:57:13'Really happy, I'm really happy.'
0:57:13 > 0:57:18He's starting a new phase in his life now, and so are we, and that's good.
0:57:18 > 0:57:20I'm really pleased for him.
0:57:31 > 0:57:34Jake is still at a mainstream school.
0:57:34 > 0:57:36With Dr Shah's advice,
0:57:36 > 0:57:38Mandy and Jason can now start to arrange
0:57:38 > 0:57:41more care and support for his brother Zaine.
0:57:43 > 0:57:46Michael Barton is planning another book about autism
0:57:46 > 0:57:49and is hoping to find a job using his physics degree
0:57:49 > 0:57:51when he leaves university.
0:57:53 > 0:57:56Autism is still an incredibly puzzling disorder of the brain
0:57:56 > 0:57:59but, over the last 50 years, we have started to unlock
0:57:59 > 0:58:03some of the meaning behind the more bizarre behaviours and symptoms.
0:58:03 > 0:58:06And we are beginning to understand what happens in the brain
0:58:06 > 0:58:09as we process all of the sensory information in the world around us
0:58:09 > 0:58:17and to comprehend how this affects the way that children think, act and grow into social beings.
0:58:19 > 0:58:20To learn more about autism,
0:58:20 > 0:58:22and to separate fact from fiction,
0:58:22 > 0:58:23go to...
0:58:27 > 0:58:28Follow the links to
0:58:28 > 0:58:30the Open University.
0:58:53 > 0:58:56Subtitles by Red Bee Media Ltd