Précis

"It was really hard trying to be like all the other kids but I just I knew I was different." Claire D

Claire D is a vivacious 25-year-old. To the outside world she is just an average young woman:

"She presents so well and convinces people she's fine and she can manage. But in reality there's a lot of areas where she really can't do it by herself without support."

Seth is 31 and has spent a lifetime struggling to cope:

"I look fine, I act fine but nobody actually knows what goes on in my head. Things that my brain does to me without me even wanting to. Makes life very difficult." Seth

They both have brain damage, caused by their mothers drinking alcohol in pregnancy.

"I'm sure there's lots of mothers out there that know that they drank. They're too scared to come forward because it's a shameful thing." Claire H, mother who drank alcohol while pregnant

In this confronting story, we take you into the lives of three everyday families grappling with the consequences of drinking in pregnancy.

The children face a devastating range of problems, from behavioural issues to learning difficulties, collectively known as Foetal Alcohol Spectrum Disorder.

And it's much more common than you might think. Best projections indicate it could affect more than half a million Australians.

"I think the burden... is predominantly in the white middle class." Paediatrician

We go inside Australia's first dedicated clinic where specialists are diagnosing and tackling the disorder, and warn that some children diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) are actually suffering the effects of foetal alcohol exposure.

"We regard foetal alcohol spectrum disorder as being the driver for ADHD." Paediatrician

The doctors also caution that Australia's heavy drinking culture overshadows the concerns we should have about women drinking alcohol in pregnancy.

"A woman does not have to be an alcoholic [to cause damage]." Psychologist

Dawn sky. Morning over suburbs/Holland house

Music

00:14

Claire into Jaimie’s room to wake her

00:25

CLAIRE HOLLAND: Morning, baby. Start wakin' up, darlin'.

00:30

DEB WHITMONT, REPORTER: It's only 6.30 am. But if 10-year-old Jaimie is going to be at school on time, she needs to get up.

00:35

Jaimie comes out of bedroom into kitchen with Claire

CLAIRE HOLLAND: Good morning, baby.

JAIMIE HOLLAND: Morning.

CLAIRE HOLLAND: How'd you sleep?

JAIMIE HOLLAND: Good.

00:43

[shot continuous] Claire hugs Jaimie

DEB WHITMONT: Today, like every day, it's going to take her at least two hours to get ready.

CLAIRE HOLLAND: Look at your hair.

00:48

Jaimie opens fridge

JAIMIE HOLLAND: I'm gonna eat some chippies.

CLAIRE HOLLAND: No, you're not having chippies for breakfast, darlin'.

00:55

Claire and Jaimie in kitchen

JAIMIE HOLLAND: Do you have any chicken pieces left?

CLAIRE HOLLAND: Yeah, but we won't be having chicken pieces for breakfast.

01:01

Jaimie goes outside, plays with dogs

01:04

JAIMIE HOLLAND: Diesel, stop.

01:05

Jaimie returns inside

CLAIRE HOLLAND: It's just a full-on battle every morning. Main challenge is trying to keep myself calm.

01:09

Claire interview. Super:
CLAIRE HOLLAND

I've got to guide her every step, one step at a time.

01:16

Jaimie cuts banana. Brad beside

BRAD HOLLAND: Not too fast.

DEB WHITMONT: For a long time, Claire and Brad Holland couldn't work out why even the simplest things seemed so difficult for their daughter Jaimie.

BRAD HOLLAND: Watch your fingers.

JAIMIE HOLLAND: I know!

01:21

Claire interview

CLAIRE HOLLAND: You know, you'd call her and just say, "Jaimie, could you come and do... Come and get ready for dinner." And she would just scream, "No" and run away. And it was just like a chase to get her. And then she'd throw herself on the floor in a true tantrum. It was so draining. It really was.

01:35

Jaimie and Claire in kitchen. Jaimie has breakfast

DEB WHITMONT: The Hollands took Jaimie to psychologists, counsellors and doctors. She was diagnosed with ADHD and given medication. But there seemed to be something more.

01:55

Claire interview

CLAIRE HOLLAND: Oh, just -- something, for someone who was medicated and the amount of strategies and counselling and help that we did put in place for Jaimie, we knew there was something else. There had to be something else, it was…

BRAD HOLLAND: It wasn't working, yeah.

CLAIRE HOLLAND: It was just something... I just knew as a mother there was something... just not right.

02:09

Jaimie putting on socks

JAIMIE HOLLAND: Here you go. You can do it, missy.

CLAIRE HOLLAND: No, you can do it.

JAIMIE HOLLAND: No, you can do it.

CLAIRE HOLLAND: No, you can do it.

JAIMIE HOLLAND: No, you can do it.

CLAIRE HOLLAND: Come on.

CLAIRE HOLLAND: I'll compromise. I'll do one and you do one.

JAIMIE HOLLAND: Yay.

CLAIRE HOLLAND: OK?

02:32

[shot continuous]

DEB WHITMONT: Jaimie's mother Claire has never hidden

02:42

Sock sequence continues

the fact that she took medication for depression and that she used to be a heavy drinker.

CLAIRE HOLLAND: I was quite a heavy drinker.

02:44

Claire interview

I'd say I was probably drinking seven or eight standard drinks a day.

02:53

Dramatised. Taking beers from fridge, wine pouring, cooking

Music

02:58

DEB WHITMONT: It was a few beers after work and often some wine with dinner.

03:02

BRAD HOLLAND: I mean, like, I'd get home from work, have a beer, have another beer,

03:11

Brad interview. Super:
BRAD HOLLAND

Pan right to Claire

pour Claire a beer, um...

CLAIRE HOLLAND: Yeah, no, not all day every day, but when Brad came home.

03:15

Dramatised. Beer drinking

BRAD HOLLAND: We were never sort of rolling around...

03:23

Brad and Claire interview

CLAIRE HOLLAND: No, my whole...

BRAD HOLLAND: ...blind drunk sort of thing.

CLAIRE HOLLAND: No.

03:26

Claire and Brad with Whitmont

DEB WHITMONT: When Claire fell pregnant, her doctor told her she had to stop her medication.

03:29

Claire interview

CLAIRE HOLLAND: Ah, not excusing myself at all, but, um, I suffer from panic disorder and have been on anti-anxiety and anti-depressive medications for 18 years.

03:35

My GP really just expressed how important it was for me to get off those medications, so I did that and it was difficult. But the thing that I fell into was the old habit of self-medicating. In the last trimester I came down to probably three standard drinks, two or three a day.

03:49

Claire and Jaimie in kitchen. Breakfast time. Claire brushes Jaimie’s hair

CLAIRE HOLLAND: OK. Where were we?

JAIMIE HOLLAND: We were in there, doing compromise.

BRAD HOLLAND: Come on.

CLAIRE HOLLAND: Settle down, bub.

DEB WHITMONT: It wasn't 'til last year that a social worker suggested Jaimie be tested for Foetal Alcohol Spectrum Disorder or FASD.

04:08

Claire read up on it and found that FASD is an umbrella term for brain disorders caused by drinking in pregnancy.

04:26

Claire interview

CLAIRE HOLLAND: It wasn't 'til I came home and started studying myself that I just knew. I knew it was that, as soon as I read the characteristics.

04:37

BRAD HOLLAND: Yeah, ticked all the boxes, didn't it?

CLAIRE HOLLAND: Yeah.

04:47

I just knew. Before the diagnosis I knew that's what we were dealing with.

04:49

Jaimie pours pills onto table. Takes tablet

CLAIRE HOLLAND: There it is. One brown one and one white one.

DEB WHITMONT: FASD meant - to Claire's horror - that her drinking while she was pregnant had left Jaimie with permanent brain damage.

CLAIRE HOLLAND: Good girl.

DEB WHITMONT (to Claire): And how did you feel about that?

04:54

Claire interview

CLAIRE HOLLAND: Just torn apart with guilt and... it was a really dark time.

05:14

It just sort of rocked my world. I was, I was just, um... just mortified at what I had done.

05:21

I just felt so ashamed and... yeah, it was hard. It was very hard.

DEB WHITMONT: What did you think when you heard, Brad?

05:28

[shot continuous] Pan left to Brad

BRAD HOLLAND: I wasn't... um... I dunno. It was... just a bit numbing, I guess. But also...

05:38

Brad and Claire

in a way, I guess I'm sort of kind of to blame as well, 'cause I was there during the pregnancy, drinking with her.

05:47

Jaimie on bicycle, about to ride off to school. Brad and Claire embrace her

BRAD HOLLAND: Have a good day.

DEB WHITMONT: For parents, there can be few things tougher than FASD.

BRAD HOLLAND: I'll see you this arvo.

CLAIRE HOLLAND: Be a good girl.

JAIMIE HOLLAND: I will.

BRAD HOLLAND: Love ya.

CLAIRE HOLLAND: It was a hard decision for us to decide to tell Jaimie or not to tell Jaimie.

05:54

Brad and Claire interview

BRAD HOLLAND: Mm.

CLAIRE HOLLAND: But I think I owed her that.

06:10

Claire

I said, "Mummy drank while she was pregnant with you and... your brain, some parts of your brain didn't form correctly and that's why you have difficulties." And ooh, it was a hard, it was a hard, hard conversation to have. She asked me: if I had've known, would I have drunk and I said, "No, no. I would not have drunk. I didn't know, I honestly didn't know." She accepted that. I remember even saying to her, "Do you still love Mummy?" because it was, it was hard. But she said, "Of course." So...

06:13

Jaimie, Claire and Brad at clinic, Gold Coast Hospital with  Dr Shelton

06:58

DOUG SHELTON, DR., PAEDIATRICIAN: OK. Here we go. Come on in.

DEB WHITMONT: Jaimie was formally diagnosed with FASD in March, at one of Australia's first specialist FASD clinics, run by Queensland Health Department paediatrician Dr Doug Shelton.

DOUG SHELTON: How are things?

JAIMIE:  Good.

DEB WHITMONT: In the last 18 months,

07:01

Dr Shelton and his team have diagnosed more than 40 children from all over Australia.

DOUG SHELTON: What grade are you in now?

JAIMIE HOLLAND: Five.

DOUG SHELTON: Grade five?

DOUG SHELTON: So Jaimie-Lee had particular

07:23

difficulties with communication, and significant problems with her adaptive skills: so that's her skills of daily living, getting organised in the morning.

07:33

Shelton interview. Super:
DR DOUG SHELTON
Paediatrician

And in addition to that, because Jaimie-Lee has the problems with cognition, with the way her brain works, the world to her is potentially a confusing and unpredictable place.

07:42

Jaimie in clinic. She pulls down a height ruler

JAIMIE HOLLAND: Hee!

BRAD HOLLAND: Come on, please. Come on, Jaimie.

CLAIRE HOLLAND: No, don't pull it right down, bub.

DEB WHITMONT: Doug Shelton says that Jaimie's attention deficit hyperactivity disorder - her ADHD - was caused by her mother's drinking during pregnancy.

07:59

Shelton interview

DOUG SHELTON: We regard foetal alcohol spectrum disorder as being the driver for ADHD, and ADHD is commonly diagnosed amongst Australia's population, but seldom do people - clinicians including myself - ask the question: could there be something else causing the ADHD? And in Jamie-Lee's case, we think FASD is clearly the causative factor in her attention control and hyperactivity problems.

08:17

Jaimie moving around in clinic, picks up toys

DEB WHITMONT: Dr Shelton says that most children diagnosed with FASD have previously been diagnosed with ADHD.

DOUG SHELTON: A lot of parents come to us and their child already has a diagnosis of ADHD.

08:49

Shelton interview

And when we diagnose them with FASD, it's like the penny drops and they go, "Oh, now we understand why our child is the way that they are." It's an explanation of the whole of their child, not just an isolated diagnosis that only explains part of their problem.

09:07

Brad and Claire

DEB WHITMONT: FASD has explained a lot for Claire and Brad Holland.

09:28

Claire interview

CLAIRE HOLLAND: Before the diagnosis, this household was in constant chaos. I would just presume that Jaimie was being defiant.

09:33

Super: CLAIRE HOLLAND

I would, in my mind I'd think: she's 10 years old. Why won't she do that? Why won't she go and get her shoes? Why won't she go and brush her teeth? But now... now we realise she can't. It's not that she won't: she can't.

09:42

Bagley interview. Super:
DR KERRYN BAGLEY
Clinical social worker

KERRYN BAGLEY, DR., CLINICAL SOCIAL WORKER: So FASD we know is a brain-based physical disability. Alcohol causes physical changes to the brain. It can kill cells. It can make cells migrate to different areas. It can disrupt neural pathways. So what we're actually talking about, even though we can't see it - it's invisible - is a physical disability.

09:57

Bar in hotel

DEB WHITMONT: It's hard to know how widespread FASD is in Australia. But it is known that about half of all pregnancies are unplanned and that half of all women drink while they're pregnant. It's also known that Australians are among the world's heaviest drinkers.

10:20

Bagley interview

KERRYN BAGLEY: Certainly if we look overseas, we know that FASD is quite common: more common then Down syndrome, spina bifida and cerebral palsy combined. And that if we look at Australia's drinking culture and the amount that we're drinking and we compare that to international prevalence studies, it's highly likely that we have a very significant issue in Australia.

10:43

Shelton interview. Super:
DR DOUG SHELTON
Paediatrician

DOUG SHELTON: Look, I think FASD is a lot more common than anybody realises. There are no accurate prevalence data in Australia, but overseas data in societies like Australia put it at between two and five per cent of the population.

11:08

Drinkers in bar

DEB WHITMONT: That means conservatively that FASD could affect at least half a million Australians.

11:25

Shelton interview

DOUG SHELTON: I think the burden of FASD disease, if you like, in Australia is predominantly in the white middle class.

11:35

Shelton and colleague in front of computer

DEB WHITMONT: What's surprising is that, though FASD is still only relatively rarely being diagnosed in Australia, it's been diagnosed and recognised for decades in the US and Canada.

11:46

Shelton interview

DOUG SHELTON: It's really just part of the fabric of life there. Every paediatrician would know about FASD. Schools know about FASD. We're probably 20 or 30 years behind North America in terms of our diagnostic capabilities, but also our capabilities to look after these children once they've been diagnosed.

12:00

Julianne Conry speaking to reporters

JULIANNE CONRY, DR., PSYCHOLOGIST: FASD exists wherever women drink...

DEB WHITMONT: One of Canada's leading FASD researchers, Dr Julianne Conry, was recently in Australia. Dr Conry says the difficulty with FASD is that no one knows how much alcohol - if any - is safe during pregnancy.

12:19

Conry interview. Super:
DR JULIANNE CONRY
Psychologist

JULIANNE CONRY: A woman does not have to be an alcoholic to affect her newborn child. But four drinks on an occasion, twice or more during the pregnancy, we know can have an effect on the child. Drinking one to two drinks, per day for most of the pregnancy seems like a small amount. And we know that can affect the child.

12:39

Conry addressing conference)

JULIANNE CONRY: So we first of all start out by asking: how big is the problem?

DEB WHITMONT: Dr Conry helped develop the international guidelines for diagnosing FASD.

13:02

JULIANNE CONRY: It isn't just that the children are severely developmentally delayed, but it can be this whole range where they have normal abilities in terms of IQ but their ability to learn from consequences, their memory, their good judgement is all impaired. Their school learning is impaired and then they have quite significant behavioural problems.

13:12

Riley and Whitmont around laptop

EDWARD RILEY, DR., PSYCHOLOGIST: Foetal alcohol syndrome is diagnosed primarily on the basis of facial characteristics, all right? So...

DEB WHITMONT: American psychologist Dr Ed Riley has spent three decades studying the effects of alcohol in pregnancy.

13:31

FAS graphics on computer

He says the altered facial features in extreme cases of FASD can be caused by just one binge of alcohol on one of just a few crucial days, early in pregnancy.

13:45

EDWARD RILEY: Here we see that a normal mouse foetus and next to it is a foetus that was exposed to alcohol on gestation day seven, which is equivalent in the first trimester in the humans. And you can see that that mouse has all the facial features of the child with foetal alcohol syndrome.

13:58

Riley at computer

And if you wait a day and a half, two days, and do exactly the same experiment, you wouldn't produce that face. So the facial characteristics develop during a very critical time, but the brain continues to develop throughout gestation, so exposure any time can impact brain development.

14:17

Foetal alcohol rat experiment

DEB WHITMONT: Ed Riley has shown that exposure to foetal alcohol can make baby rats hyperactive and aggressive.

EDWARD RILEY: Well, I was very sceptical initially that

14:34

Riley interview. Super:
DR EDWARD RILEY
Psychologist

there were these behavioural, teratogenic effects of alcohol, or these changes in brain that occurred, because there were so many other factors that could account for abnormal behaviour.

14:48

But the animal studies, where all that's controlled, produced the same types. And it convinced me that there was this common change in behaviour as a result of prenatal alcohol exposure.

15:01

Claire Duley riding bicycle down street)

Music

15:12

DEB WHITMONT: For most of her life, people have expected Claire Duley to behave normally. But she can't always manage it.

15:18

CLAIRE DULEY: Starting from when I was in primary school, since I could remember, I always wondered why, like, all my peers and classmates were different. And I was diagnosed with ODD, ADD, ADHD: all the sort of diagnosis in that regard under the sun. So it was really hard trying to be like all the other kids. But I just... I knew I was different.

15:29

Photo. Claire D as child

DEB WHITMONT: When Claire was little, her mother, Tracey Dinn, couldn't cope with her.

15:57

Tracey interview . Super:
TRACEY DINN

TRACEY DINN: Oh boy. It was bad. It was really bad. Claire would destroy her whole room. She would destroy everything.

16:04

Photo. Claire D as child

I couldn't take her to the grocery store. I couldn't take her shopping or anything because she just would run around and

16:17

Tracey interview

do anything for attention. And most of it was bad things to get attention, not good things.

16:24

DEB WHITMONT: Tracey Dinn says she drank for the first three months she was pregnant.

16:31

TRACEY DINN: I didn't know I was pregnant until I was three months.

DEB WHITMONT: Did you drink a lot?

TRACEY DINN: Yes, I did.

DEB WHITMONT: How much?

TRACEY DINN: Enough.

DEB WHITMONT: Three glasses a day, four glasses?

TRACEY DINN: Probably three glasses, about three glasses a day.

DEB WHITMONT: More, maybe, sometimes?

TRACEY DINN: Um... ah, maybe, maybe a whole bottle.

16:36

Claire Duley walks in through the front door of home to Neroli in kitchen

CLAIRE DULEY: Hello?

DEB WHITMONT: Outwardly, Claire Duley looks like any other young girl. She has an average IQ. But although she's 25,

16:56

her social and emotional age is assessed as somewhere between 12 and 15. For the last 10 years she's lived with a foster carer, Neroli Endacott.

NEROLI ENDACOTT, FOSTER CARER: Ah, Claire's probably her own worst enemy because she presents so well

17:09

Neroli interview

and convinces people that she's fine and she can manage. But in reality there's a lot of areas where she really can't do it by herself without support.

17:27

Neroli Endacott shows Tracey Dinn a cartoon drawn by Claire D

TRACEY DINN (reads): "What happens at home: anger..."

NEROLI ENDACOTT: Well, I should think that that's fear at what was happening; the anger, the fights...

TRACEY DINN: That's exactly what happened. That's what was happening.

17:41

DEB WHITMONT: Over the years, Neroli has fostered more than 100 children. She soon recognised Claire's behaviour as typical of foetal alcohol.

17:51

Neroli interview

NEROLI ENDACOTT: Well, she was still very childlike and she was still tantrumming like a two or three year old if she wanted to get her own way. And when you see a child of 15, 16 tantrumming, writhing on the floor - really - and, and tantrumming like a, a two-year-old, you know their brain's not where it should be.

18:04

Claire D interview. Super:
CLAIRE DULEY

CLAIRE DULEY: Once I'm angry, there's really no stopping it until in my mind I'm ready to calm down. That could take hours; sometimes even days.

DEB WHITMONT: And how do you feel afterwards?

18:22

CLAIRE DULEY: Normally I can feel even angrier or guilty and, like, I wonder what all the fuss was about because half the time I don't remember what I'd said or done, so...

18:34

Home video footage. Tracey arguing with Claire

DEB WHITMONT: As Claire got older, she became even more difficult for both Tracey and Neroli.

TRACEY DINN: Claire, that's not what I asked you to do. I... What we're trying to ask you to do is to clean up your mess. That's all.

CLAIRE DULEY: Get out.

TRACEY DINN: We just want you... clean up the mess.

CLAIRE DULEY: I'm not cleaning it up. Get out!

TRACEY DINN: Give me the plate.

18:51

[shot continuous]

DEB WHITMONT: Neroli started filming Claire's outbursts to convince doctors that she needed assistance. But they had little to offer.

19:13

Home movie footage continues

CLAIRE DULEY: Get out!

TRACEY DINN: Claire, stop it.

CLAIRE DULEY: Don't fucking record me.

TRACEY DINN: Claire, what's wrong with you?

CLAIRE DULEY: Get out.

TRACEY DINN: You going to pack-

19:21

CLAIRE DULEY: Yes, I'm going to pack my stuff and get the fuck out of this place!

TRACEY DINN: Where are you going?

DEB WHITMONT: At one point, Neroli had to be hospitalised after Claire jammed her in a doorway.

CLAIRE DULEY: Get out!

32:10

Claire D interview

CLAIRE DULEY: Just before I turned 18, I had a really violent and destructive attitude towards life and I made Ma suffer along the way, with the yelling and the screaming. I'd put her in hospital, which I really regret.

19:43

DEB WHITMONT: Claire Duley's now been formally diagnosed with FASD.

19:59

Claire texting on phone

But in Australia, it isn't considered a disability. And there are very few services for Claire and others like her. The danger is that, without help, FASD can easily lead to depression, anxiety - and worse.

20:05

Shelton interview. Super:
DR DOUG SHELTON
Paediatrician

DOUG SHELTON: The problem with FASD is one of diffuse brain damage. And the brain damage doesn't actually get better. And what happens as time goes by is that, when you're supposed to develop certain skills about how you manage yourself in the world, it's very difficult to do that if you have permanent brain damage. So some of the difficulties that we see emerging are depression, anxiety, suicidality problems with the law: shoplifting, stealing, right through to very significant crimes.

20:21

Seth and Anne Russell fishing sequence

Music

20:58

DEB WHITMONT: Life has held few pleasures for Seth Russell and his mother, Anne. Seth Russell is 31. Until he was 17 and diagnosed with FASD by a doctor in Canada, he didn't know what was wrong with him. Seth's school days hold little but bad memories.

21:06

SETH RUSSELL: I didn't learn anything at school. I remember a primary teacher who used to

21:29

Seth interview

grab my arm so tight that he'd leave bruises and marks on me.

ANNE RUSSELL: Because he...

SETH RUSSELL: I don't know why. I can't remember why but it was probably 'cause I didn't understand something and...

21:35

DEB WHITMONT: When Seth was born, his parents lived in a Queensland mining town. His mother, Anne, says she hates herself for what at the time was considered social drinking.

21:46

Anne interview. Super:
ANNE RUSSELL

ANNE RUSSELL: We didn't  drink any more or any less than anybody there at the time. When I got pregnant

22:04

Dramatised. Beer drinking

with Seth:  three to four drinks, two to three or four times a week. And

22:10

Anne

those social few drinks made the difference between Seth having a life that he should be leading right now and having the life that he currently does lead.

22:19

Dramatised. Hotel  drinking

Music

22:32

DEB WHITMONT: Anne Russell says, back in the '80s, her doctor told her there was no harm in having a few drinks in pregnancy. When she found herself with two uncontrollable children, she was told to go and take a course in parenting.

22:35

Anne interview

ANNE RUSSELL: Nothing seemed to make any difference: no punishment, no reward system, no tough love, absolutely nothing worked. It didn't matter if I took away a toy. It didn't matter if I said, "If you do this then I'll get you something." Nothing mattered.

22:51

Photo. Seth and brother as children

They would, you know, jump on furniture, break furniture. I couldn't go out.

23:13

Anne interview

People, in fact, stopped coming around.

23:20

Photo. Seth as child

DEB WHITMONT: Life was equally miserable for her younger son, Seth.

SETH RUSSELL: I never knew when I was tired. I never knew I was getting tired.

23:24

Seth interview. Super:
SETH RUSSELL

My brain would go a million miles an hour, constantly: 100 different things at a time. Always thinking, always running around. I could never stop.

23:33

Seth in workshop

DEB WHITMONT: By his early teens, Seth was sleepless, frustrated and failing at school. He started getting into trouble, drinking and taking drugs.

23:44

Anne interview

ANNE RUSSELL: I think he needed to have something that made his head slow down, made his mind slow. And because we didn't know what was wrong, he had a lot of stimulation. He had a lot of frustration at school, because he was always in trouble but he never, ever knew why. Every time the police siren, every time we saw the police go past, every time we heard an ambulance, it was Seth.

23:58

Seth interview

SETH RUSSELL: I've had many people who were saying, "There's nothing wrong with you. Get over it." It's not the case. I look fine, I act fine. But nobody actually knows what goes on in my head. Things that my brain does to me without me even wanting to. Makes life very difficult.

24:29

Anne interview

ANNE RUSSELL: And then when he started becoming suicidal, which was quite early in his school years, because his frustration at not being able to do what other children could do. A child suicidal at 10 is just not right.

24:51

Seth interview

SETH RUSSELL: I've been  suicidal my whole life.

DEB WHITMONT: Do you still feel like that sometimes?

SETH RUSSELL: All the time, every day.

25:08

DEB WHITMONT: How do you stop it?

SETH RUSSELL: I don't think about it. Drugs. Drugs and alcohol.

25:15

Seth in workshop

Music

25:24

DEB WHITMONT: Anne Russell believes that if Seth had been diagnosed sooner, she might have been able to help him avoid some of the pain of drugs and depression.

25:28

Anne interview

ANNE RUSSELL: It just escalates from puberty on. It escalates without a diagnosis. It can escalate until prison. And prison and, or suicide are the two sort of end games, really, for people with FASD who haven't been diagnosed.

25:40

Fitzroy Valley. Car on road

Music

26:00

DEB WHITMONT: It's in Indigenous communities that FASD has been the most devastating.

26:05

Kids walk and ride bikes

So far, only one place in Australia has been brave enough to confront the extent of the problem. For the Fitzroy Valley, it was a matter of survival.

26:11

June interview. Super:
JUNE OSCAR
CEO Marninwarntkura Women’s Resource Centre

JUNE OSCAR, CEO, MARNINWARNTIKURA WOMEN'S RESOURCE CENTRE: We're a people that rely on an oral tradition, heritage. So our history, our languages, our ceremonies, our songs and dance requires us to have an ability to retain in memory all of these important things. So if our children's brains are being damaged by alcohol, then it places at huge risk the survival of our cultures and our traditions.

26:24

Maureen and June with Whitmont at table in front of photos on display

DEB WHITMONT: Research in the Fitzroy Valley revealed one of the highest FASD rates in the world, with one in every five children now aged between 12 and 13 affected by foetal alcohol. But even doing the study has begun to make a difference.

26:55

Super:
MAUREEN CARTER
CEO Nindilingarri Cultural Health Services

MAUREEN CARTER, CEO, NINDILINGARRI CULTURAL HEALTH SERVICES: There's a lot more awareness around the dangers of drinking during pregnancy. And a lot of our women now are abstaining from drinking alcohol.

27:17

Tristan, Quaden and Tylon on trampoline

DEB WHITMONT: There could be up to 300 children with FASD in the Fitzroy Valley -

27:31

among them, 16-year-old Tristan Hand and his younger cousins, Quaden and Tylon.

27:38

GEOFF DAVIS, GRANDPARENT: Tristan must be the loveliest person in the world. His

27:49

Geoff. Super:
GEOFF DAVIS
Grandparent

disability sometimes means that he loses control of his emotions, so he can, he can, he can really lose it if he gets really anxious or something really upsets him.

27:53

Tristan riding bicycle

GEOFF DAVIS: Righto, show us your style, Tristan.

28:05

DEB WHITMONT: But in remote communities there are few services, little hope of a job and, so far, no strategies for the future for Tristan and hundreds of others like him.

MARMINGEE HAND, GRANDPARENT: You know, for this community,

28:10

Geoff and Marmingee

one of the things that we really should be is having our, um, a strategy in place.

28:26

Marmingee. Super:
MARMINGEE HAND
Grandparent

We hope that people will understand that these children are different. They are different from other people and they've got needs and we need to look after them in a certain way.

28:33

Irrigation system/ Meeting

DEB WHITMONT: It's estimated that, at some point in their lives, 60 per cent of people with FASD get into trouble with the law.

28:47

Riley interview

EDWARD RILEY: These kids need help. They need services.

28:58

Super:
DR EDWARD RILEY
Psychologist

They often try to please other people, so they can be easily persuaded to do things that they probably shouldn't do. So they run into problems with the juvenile justice system.

29:02

Children's Court session

CLERK OF COURT: All rise.

DEB WHITMONT: Perth Children's Court Magistrate Catherine Crawford worries that many of the children she sees in court are affected by FASD.

29:15

Crawford interview. Super:
CATHERINE CRAWFORD
Magistrate Children’s Court WA

CATHERINE CRAWFORD, MAGISTRATE, CHILDREN'S COURT WA: FASD in the Children's Court I think is a significant issue. I think there's a significant proportion of children and young people who appear in the court, who are likely to be affected by FASD.

29:30

Banksia Hill Youth Detention Centre

Music

29:45

Irrigation system at detention centre

DEB WHITMONT: Those concerns are being taken seriously.

29:53

Inmates at detention centre

At the Banksia Hill Youth Detention Centre, researchers are trying to find out how many young detainees have FASD. A study in Canada suggests it could be as many as one in four.

29:55

Crawford interview

CATHERINE CRAWFORD: Failure to diagnose and intervene early means, generally, behaviours escalate. They breach bail, they breach community based orders, other sentences, and so the penalties escalate.

30:11

Crawford in court

CATHERINE CRAWFORD: Three weeks' time has been lost in implementing the court's order.

DEB WHITMONT: The day we filmed, Magistrate Crawford had ordered that a child appearing before her be assessed for FASD before he was sentenced. But the assessment hadn't been done.

30:28

CATHERINE CRAWFORD: I'm very unhappy about the way this has been conducted.

30:46

Crawford interview

CATHERINE CRAWFORD:  In some of the cases there appear to be impairments, so that would appear to merit proper assessment by qualified clinicians. And we're not able to get that at the moment, so there's a serious risk of injustice to the child.

30:50

Supreme Court exterior/Martin in office

DEB WHITMONT: In Western Australia, concerns about FASD are being raised at the very top of the legal system. Wayne Martin is the state's Chief Justice.

31:11

Martin interview. Super:
WAYNE MARTIN
Chief Justice Supreme Court WA

WAYNE MARTIN, CHIEF JUSTICE, SUPREME COURT, WA: People who suffer from the condition are especially vulnerable at various points in the criminal justice system. They're vulnerable at the point of police interview, because they have less capacity to understand whether they should in fact participate in the interview. They're also vulnerable in what is a fairly complex trial and criminal justice process. And they're also especially vulnerable if incarcerated.

31:25

New Zealand city GVs

Music

31:46

DEB WHITMONT: The problem of FASD in the criminal justice system has recently been highlighted by a dramatic case in New Zealand that's likely to have major implications for courts in Australia.

31:51

3 News, NZ news report

NEWSREADER: A few minutes ago, the Privy Council in London announced it had quashed Pora's convictions because of the evidence of two forensic experts.

32:03

Pora release

DEB WHITMONT: In March, New Zealand man Teina Pora celebrated his release after 22 years in prison. Pora's conviction for murder

32:12

Privy Council sitting

had been unanimously quashed by New Zealand's then-highest court of appeal, the Privy Council. The reason was that Teina Pora was diagnosed with FASD.

32:2

Kerr addresses council

BRIAN KERR, BARON KERR OF TONAGHMORE, PRIVY COUNCIL: This condition could explain why Mr Pora had made what are now claimed to be false confessions and why those confessions could not be regarded as reliable.

32:35

1993 Police interview video

POLICE OFFICER: Have a seat over there, Teina.

DEB WHITMONT: In 1993, Teina Pora, who was then 17, confessed, after four days of police questioning, to a brutal murder.

332:49

McKinnell

Former detective Tim McKinnell, who campaigned for Pora's release, has always believed the confession was unreliable.

33:00

McKinnell interview

TIM MCKINNELL, PRIVATE INVESTIGATOR: There were some pretty troubling features right from the very beginning of Teina's story.

33:08

1993 Police interview video

He was cooperative. He was compliant. He was very much trying to please, I think, those that were interviewing him.

33:13

McKinnell interview. Super:
TIM MCKINNELL
Private investigator

And the most obvious example of that is when the police asked him to take them to the scene of the murder. He couldn't do that.

33:20

Police video with Pora at murder scene

POLICE OFFICER: It's obvious you just don't know exactly which house. Would you agree with that? Would you agree with that, or... OK.

33:27

Well, this is the house here, I'm showing you, at 105 Pah Road, with the hedge here. All right? Does that mean anything to you? What does it mean to you?

TEINA PORA: It's the house I came to.

POLICE OFFICER: It's the house you came to.

33:36

Music

33:57

Police officers escorting Pora to prison

DEB WHITMONT: Though Teina Pora later claimed he was innocent, he could never explain why he'd confessed to the murder.

33:59

Pora in court

Then, two years ago, a neuropsychologist who specialises in FASD, Dr Valerie McGinn, suggested that Teina Pora be tested.

34:09

McGinn interview

DR. VALERIE MCGINN,  NEUROPSYCHOLOGIST: So I went down and spoke with his family and did find out that his mother was drinking in pregnancy.

34:20

And then I did extensive testing with him. And Mr Pora,

34:28

Super:
DR VALERIE MCGINN
Neuropsychologist

his reasoning, judgement and thinking were impaired. And this is why he was susceptible to being led to say things that weren't in keeping with the actual facts. And that's common in people with FASD.

34:34

Privy Council sitting. GFX text:
…unquestionably establishes the risk of a miscarriage of justice.

DEB WHITMONT: The Privy Council agreed. It found the FASD diagnosis "unquestionably establishes the risk of a miscarriage of justice." And it quashed Teina Pora's conviction.

34:50

McGinn interview

VALERIE MCGINN: The highest court has accepted that FASD is a very important factor in fair justice being dispensed. It needs to be recognised. It needs to be accommodated and that there are risks involved in not doing that.

35:06

Martin. Super:
WAYNE MARTIN
Chief Justice Supreme Court WA

WAYNE MARTIN: The Pora case is certainly a precedent. It applied conventional principle to the facts of that case, and if the same circumstances occurred in Western Australia I'd expect exactly the same result.

35:21

Plane, evening traffic passes Warnecke cross on side of road

DEB WHITMONT: Four Corners has discovered there is a case in Western Australia that's remarkably similar.

35:30

Photo. Josh Warnecke

Late one night in 2010, 21-year-old Josh Warnecke was beaten to death while walking home after a night out in Broome.

35:39

Photo. Gene Gibson

A young Aboriginal man, Gene Gibson, has spent the last three years in jail for the murder.

35:49

Bishop interview

But even the victim's mother, Ingrid Bishop, believes Gibson is innocent.

35:56

Super:
INGRID BISHOP

(To Ingrid Bishop) Do you believe that the police have the right man for your son's murder?

INGRID BISHOP: Absolutely not. No way. Do I think Gene Gibson is innocent? Yes.

36:01

From the way he was behaving throughout the court process, I don't even know if he was actually aware of what was going on, let alone those interviews that took place at the very beginning.

36:11

Floral tribute to Josh at side of road

DEB WHITMONT: Gene Gibson confessed to the murder after nine hours of police questioning. Ingrid Bishop says his confession was unconvincing.

36:23

Ingrid interview

INGRID BISHOP: We were led to believe that the confessions that Gene Gibson had made matched the crime scene identically - and that wasn't the case.

36:39

When he was taken on site, the detectives said, "Take us where" - the detectives said, "Take us to where, Josh was- where you killed Josh." So Gene Gibson took them to the wrong place.

36:48

Casuarina prison exterior

Music

37:02

DEB WHITMONT: Gibson's confession was thrown out of court for being involuntary. But though

37:07

Photo o/lay of Gibson

the murder charge against him was dropped, the police charged him with manslaughter.

37:13

Ingrid interview

INGRID BISHOP: The lesser charge of manslaughter was put in place because of the botched investigation. So that almost gave the Western Australian Police an out. They could still get this one. They could still tick the box. So they said, "If you plead to manslaughter, this thing will go away. Instead of being imprisoned for anywhere from 15 to 20 years,

37:20

Police at crime scene

you'll be lucky if- you know, you'll get a lesser sentence."

Music

37:40

Whitmont to camera. Night. Super:
DEBBIE WHITMONT

DEB WHITMONT: Though Gene Gibson's confession was ruled inadmissible, he ended up pleading guilty to manslaughter and is now serving seven and a half years in prison. But two experts have told Four Corners there's good reason to believe that Gene Gibson suffers from foetal alcohol spectrum disorder. And if he does, that raises real questions about his capacity to plead guilty, and whether he had anything at all to do with the murder.

37:51

Aerial. Aboriginal community/Overlay photo of Gibson

Music

38:17

On screen GFX text:
depression
self harm
and drug use

DEB WHITMONT: Gene Gibson, who grew up in a remote Aboriginal community, has a history of depression, self-harm and drug use.

38:20

Gibson family members

Gene Gibson's family told Four Corners that he struggled at school and that his mother is a long-time alcoholic.

38:30

Maisie interview. Super:
MAISIE GIBSON NAPURRULA

MAISIE GIBSON NAPURRULA: Yeah, she was drinker. She been drinking when she was pregnant, yeah. Yeah, that's why Gene: look, he's sick, you know.

38:39

McGinn in office with colleague

DEB WHITMONT: Dr Valerie McGinn, whose evidence was accepted by the Privy Council, says she sees parallels between Gene Gibson's case and Teina Pora's case in New Zealand.

38:52

McGinn interview. Super:
DR VALERIE MCGINN
Neuropsychologist

VALERIE MCGINN: Certainly there's confirmed alcohol exposure, I believe -- heavy alcohol exposure. So that's immediately a red flag. And there's a history of developmental and learning problems. And it seems that, that he was led into making some kind of confession that was disallowed. So I can only assume that that wasn't considered an acceptable confession. So that indicates, perhaps, he made a false confession. And so I think, you know, that's a lot of red flags to warrant an FASD assessment.

39:08

Martin in office reading case

DEB WHITMONT: Western Australia's Chief Justice Wayne Martin can't comment directly on Gene Gibson's case. But he says that, in theory, with a FASD diagnosis, a case like it could be reviewed despite a guilty plea.

39:44

Martin interview. Super:
WAYNE MARTIN
Chief Justice Supreme Court WA

WAYNE MARTIN: Just because somebody has entered a guilty plea doesn't mean that the case can't be reviewed by the Courts of Appeal. If the guilty plea is entered because the person doesn't understand what they're doing, then certainly that can be reviewed by a court. So there are systems available to review these processes. But in practical terms, we first need the diagnosis.

40:01

Gibson family members

DEB WHITMONT: So far, though Gene Gibson's family believe he's innocent; they have no way of getting him a FASD diagnosis.

40:22

Photo. Ingrid and Josh with fish

For Ingrid Bishop, who's already lost her son, it could be a double injustice.

40:32

Ingrid interview

INGRID BISHOP: You know, we need to have some sort of resolution here. So if Gene Gibson is innocent and he's freed, and we've been able to contribute to that, well, that's, that's worthy of celebration. It's still not going to bring Josh back, but we don't need to have two victims here. It's shameful, absolutely shameful.

40:42

Anne Russell addressing support group

ANNE RUSSELL: I'd like to make a point here. For me, I think, because of my early life,

41:02

Super: ANNE RUSSELL

nothing anyone says or does seems to help me feel less guilt about what I've done to my children.

41:09

DEB WHITMONT: Whether they're black or white - and wherever they are in Australia - there's little recognition and few services for families and children struggling with FASD.

41:16

Support group morning tea

In Southport, Queensland, Claire Holland has set up a support group. She already has more than 160 members. And with estimates of around 500,000 Australians affected by foetal alcohol disorders, she believes there could be many more people like her needing help.

41:31

Claire H interview

CLAIRE HOLLAND: Oh, because I wish I had someone like me, with me, when I got the diagnosis. It's just, I'm sure there's lots of mothers out there that know that they drank. They're too scared to come forward because it's, it is a shameful thing and, and the guilt you hold is... it's just... overwhelming.

41:55

Anne interview

ANNE RUSSELL: All I wanted for my children were for them to be happy. And I'm afraid I've failed, you know.

42:24

Anne and Seth hug

My son isn't happy, he's not happy, I don't see a point in time where he is likely to be completely happy.

42:32

Anne interview

And that's all parents, mums, want for their children, isn't it?

42:40

Jaimie on playground equipment

Music

42:46

CLAIRE HOLLAND: We don't know if Jamie's going to live independently. We don't know if she's going to hold down a good job.

42:52

Brad and Claire

We don't know if she's going to be able to cope with relationships to the point of marriage and having children.

42:57

Jaimie rides bike

I've done something that has made Jamie's life difficult, challenging. But I can't wallow in it. I've got to use these energies in making her life as best I can.

43:04

Claire interview

And that's the best way I can explain how I feel to other people.

43:17

43:6