JENNY BROCKIE: Hi, I'm Jenny Brockie, welcome everybody, good to have you with us tonight. Tammy, you had your daughter 21 years ago when you were just 17. How did you find out you were pregnant?
TAMMY PENNA: I was actually involved in a car accident and I was about eight weeks pregnant, but I didn't know at that stage that I was pregnant, and through drink driving, I was involved in this car accident.
JENNY BROCKIE: So you were the driver?
TAMMY PENNA: Yeah, I was the driver, yeah. And then I found out when I got to the hospital when they ran a few tests that I was pregnant.
JENNY BROCKIE: How much had you been drinking?
TAMMY PENNA: I'd been drinking a lot. I'd been"¦
JENNY BROCKIE: In that eight weeks?
TAMMY PENNA: Yes.
JENNY BROCKIE: When you didn't know you were pregnant?
TAMMY PENNA: Yes.
JENNY BROCKIE: What's a lot?
TAMMY PENNA: Um, I guess a typical weekend binge drinker I guess, maybe 10, 15 drinks.
JENNY BROCKIE: So what a lot of teenagers probably were doing at that time?
TAMMY PENNA: Yeah.
JENNY BROCKIE: Yeah?
TAMMY PENNA: Yeah.
JENNY BROCKIE: And how much did you then drink once you knew you were pregnant?
TAMMY PENNA: When I found out that I was pregnant my - I'd stopped drinking for a couple of months because I had to recover from my car accident, but then after that I had a couple, I used to have a couple of drinks maybe every two or three weeks, maybe, I'd have two or three drinks. At that stage I didn't know that it was an issue.
JENNY BROCKIE: Did anyone warn you not to?
TAMMY PENNA: No.
JENNY BROCKIE: Did the doctor talk to you about, they must have known in the hospital you'd been drinking when you had the accident?
TAMMY PENNA: Yeah.
JENNY BROCKIE: Did any doctor talk to you about that once they found out that you were pregnant?
TAMMY PENNA: No, nobody did.
JENNY BROCKIE: I'm interested in what advice people are getting about drinking and pregnancy. Alison, you're 36 weeks, what advice are you getting?
ALISON WILSON: My obstetrician says to stay away from it if you can.
JENNY BROCKIE: So are you drinking a bit?
ALISON WILSON: No, I'm not. I probably had one glass of wine the whole pregnancy and certainly after the first trimester.
JENNY BROCKIE: Zina, what about you?
ZINA EDWARDS: So my midwife did ask me if I was drinking and I said, you know, I have - my husband's having a really nice glass of wine I'll have a sip or a finger but I haven't really had a lot of drinks. So probably do have the occasional half a glass of wine and my midwife didn't think that was a problem.
JENNY BROCKIE: Barri, you're a GP in Bondi in Sydney, what advice do you give?
DR BARRI PHATARFOD: The guidelines are very clear and there's no safe level of alcohol in pregnancy.
JENNY BROCKIE: Now you've been seeing pregnant women for 20 years, have you always given that advice?
DR BARRI PHATARFOD: Well no, the guidelines changed and the guidelines we're talking about now are the most recent ones from 2009 - the guidelines up and until about 2001, they called it low level drinking, which had problems because low level drinking is a very vague term. So what one group will think is low level, might actually be considered quite moderate or high levels.
JENNY BROCKIE: Tammy, your daughter's 21 now?
TAMMY PENNA: Yes.
JENNY BROCKIE: Tell us what she was diagnosed with a few years ago?
TAMMY PENNA: Um, from childhood, well from 17 she was diagnosed with FASD.
JENNY BROCKIE: Which is foetal"¦
TAMMY PENNA: Foetal Alcohol Spectrum Disorder, yes. I had many other diagnosis prior to that.
JENNY BROCKIE: So what was happening, what were you noticing with her as a child?
TAMMY PENNA: Um, it really started when she started primary school. It started off with, she had a number of learning difficulties, she had dyslexia and I took her to a psychologist and had her tested. Attachment disorder was another diagnosis that she was diagnosed with when she was 14.
JENNY BROCKIE: Attachment disorder?
TAMMY PENNA: Yes.
JENNY BROCKIE: Meaning what?
TAMMY PENNA: Basically attachment disorder is something that primarily affects children who have come from abusive families, or are adopted, so for me that was really heart breaking because she came from neither of those situations. So"¦
JENNY BROCKIE: So what was it like for you to finally get that diagnosis?
TAMMY PENNA: For the first time in 17 years I actually felt as though I was a good mum because prior to getting that diagnosis I thought that I was just a bad mum.
JENNY BROCKIE: And how did you feel about it being connected with the alcohol consumption when you were pregnant?
TAMMY PENNA: Initially, initially it was difficult, just for the first couple of days I think I was really quite emotional, just overridden by guilt. But after that I was, I was more concerned about getting her support.
JENNY BROCKIE: And probably relieved you had an explanation for the 17 years of "¦
TAMMY PENNA: Absolutely.
JENNY BROCKIE: Multiple problems?
TAMMY PENNA: Yes, absolutely.
JENNY BROCKIE: Elizabeth, you're a paediatrician, you run a diagnostic clinic on this, on Foetal Alcohol problems. What is Foetal Alcohol Spectrum Disorder or FASD?
PROFESSOR ELIZABETH ELLIOT, UNIVERSITY OF SYDNEY: Well as the name implies, there's a spectrum of disorders that may result from exposure to alcohol in utero.
JENNY BROCKIE: Okay, so just to get this clear, Foetal Alcohol Syndrome, which a lot of people have probably heard of rather than the spectrum disorder, Foetal Alcohol Syndrome is what we're seeing here?
PROFESSOR ELIZABETH ELLIOT: Exactly. Foetal Alcohol Syndrome is characterised by physical abnormalities including of the face. So if you look at that picture this child has a very indistinct philtrum, the area between the bottom of the nose and the upper lip, has a thin upper lip and has narrow eye openings, and those are due to the toxic effect of alcohol on the brain which then influences the development of the face. And these children are usually exposed in the first trimester when the face is forming and the other bodily organs are forming. However, they also have significant behavioural learning and other development problems.
JENNY BROCKIE: So that's the most severe manifestation?
PROFESSOR ELIZABETH ELLIOT: That's the most severe in that they have physical manifestations. However, the neuro behavioural problems in children without physical manifestations maybe just as severe and that's the difficulty, is that those children are largely invisible because they're not distinguished by having birth defects or an abnormal face.
JENNY BROCKIE: And how much alcohol does it take to cause this?
PROFESSOR ELIZABETH ELLIOT: Well I think that's very difficult question to answer and we're never going to answer that, we can't do experiments in pregnant women, and we know that the amount of alcohol, the blood level that's achieved after a drink is very different in different women. Depending on their age, their body composition, their genetics, the genetics of the foetus.
JENNY BROCKIE: Morgan, you're 18, you're here tonight with your dad Andrew and your step mum Yvonne. How old were you when you were diagnosed with Foetal Alcohol Spectrum Disorder?
MORGAN PHILLIPS: I was about 11 years old.
JENNY BROCKIE: And we visited you at home last week, let's have a look.
MORGAN PHILLIPS: A lot of people, yeah, look at me and definitely don’t see anything wrong or different. Things I find difficult would definitely be anything to do with maths, sometimes it is really hard to figure out the measurements and understand the measurements, I always have to ask questions about the cups even though I know sometimes I can do it easy, but then the next time I cook, I just don’t really get it. It really sucks because I knew I understood it the last time I cooked.
I struggle with reading, especially with really big words I haven’t heard before. Spelling and handwriting are really bad, especially with my texting even auto correct can’t help – they don’t even understand what I am writing. Sometimes I just"¦. If I don’t understand something, I have always just zoned out because I know I am never going to understand it, but I have always just learnt to nod and sort of pretend I am listening and I know what is going on, but I don’t.
JENNY BROCKIE: Now you're at TAFE?
MORGAN PHILLIPS: Yeah.
JENNY BROCKIE: And what were all the head mannequins on the table there?
MORGAN PHILLIPS: I'm studying hairdressing full time and, yeah, so basically they're my practice dolls instead of doing them on human heads and stuff like that.
JENNY BROCKIE: And what's it like at TAFE? Is that hard for you?
MORGAN PHILLIPS: It's actually a lot easier because I'm only studying one subject and I only have to worry about that. It is harder sometimes but not as hard as high school was though.
JENNY BROCKIE: What was hard about high school?
MORGAN PHILLIPS: There's so many different subjects and you've got to remember so much, there's so much different assignments and all that, there's just too much at once.
JENNY BROCKIE: You mentioned numbers that you have trouble with numbers, what's it like telling the time?
MORGAN PHILLIPS: On the phone it's quite easy, but if people are saying like quarter past, half past and stuff like that, sometimes I can't understand it and one I day can, the next day I'll completely forget. Yeah, most days are bad, some days are really good, just really depends.
JENNY BROCKIE: So you're okay if numbers are in a row like if it's a phone number?
MORGAN PHILLIPS: If they don't move I'll remember it really well, but if they move I can't remember them.
JENNY BROCKIE: How important is routine for you?
MORGAN PHILLIPS: Really important. I just feel it's easier to get up in the morning knowing what I've got to do.
JENNY BROCKIE: So do you forget to do things when you get up in the morning, things like having a shower or brushing your teeth?
MORGAN PHILLIPS: If I've got a routine I won't forget, but if it comes to the holidays I will forget it because there's nothing set in place for me.
JENNY BROCKIE: Andrew, tell us about how, how Morgan came into your care?
ANDREW PHILLIPS: Well, we'd separated from her mum and I'd have Morgan a couple of nights a week and alternate weekends, half of the holidays. Morgan was then staying with us full time and visiting her mum and until her mum passed away when she was"¦
YVONNE INGUZ: Eight.
ANDREW PHILLIPS: About eight years old.
JENNY BROCKIE: And why did you suspect foetal alcohol problems?
ANDREW PHILLIPS: Well it was Yvonne that found that out.
JENNY BROCKIE: Why did you suspect it Yvonne?
YVONNE INGUZ: Well I couldn't work out what was going on because I've got three other children and Morgan didn't seem to be developing in the same way. Sort of behaviourally she couldn't manage buttons, she couldn't manage sort of very basic things, she wouldn't remember anything.
JENNY BROCKIE: So you could see she was struggling?
YVONNE INGUZ: I could see she was struggling but I wouldn't work out what was going on and I was just at work one day and Andrew had mentioned, that Morgan's mum had been drinking throughout pregnancy and I just went on the internet. I thought as a midwife I'll just have a look, sort of look at some of the withdrawals of babies, what are their sort of long term effects of this and I just downloaded it and I just went oh, my goodness, it was just all this stuff.
JENNY BROCKIE: It was just like painting the picture?
YVONNE INGUZ: It was just painting this picture and, yeah, I went back to Andrew and I said well, this might be the case.
JENNY BROCKIE: Andrew, did you know how much Morgan's mum drank during the pregnancy?
ANDREW PHILLIPS: No, no, there was, I mean at the time we didn't know. Her mum stopped smoking, we changed our diet and our lifestyle a bit to be, try and get - be good parents. You know, drinks on the weekends with friends or a barbecue, occasionally a bit of drink or alcohol with a meal. It wasn't until after, like in hindsight that there was a lot of hidden drinking. That was, yeah, you just didn't know was happening.
JENNY BROCKIE: You didn't know at the time?
ANDREW PHILLIPS: No.
JENNY BROCKIE: And what was it like when Morgan was diagnosed when she was eleven?
ANDREW PHILLIPS: It was a relief to actually have something to say this is what's been happening. So then we went back to the education system and said well look, can we get a negotiated learning plan to try and help and basically they just didn't want to know, wouldn't do anything.
JENNY BROCKIE: Well there was a problem with a specific teacher, only recently, wasn't there?
MORGAN PHILLIPS: The teacher said that my writing in my English wasn't up to the year level standard and I explained to her basically the reason why it's not and I can't help it at all. And then sort of from there she asked what do I have, I explained to her that I've got foetal alcohol syndrome and she goes I've never had one of those before.
JENNY BROCKIE: And how did you make you feel Morgan?
MORGAN PHILLIPS: A bit awkward because a lot of people don't actually know that I've got it in that classroom.
YVONNE INGUZ: I was driving home and Morgan's telling me this story in the back of the seat and she said: "And she said did your mum regret what she did to you?" And I'm just mortified because we'd got an absolute no blame policy in our family, and then Morgan had to tell her that her mum had died. It was just shocking.
JENNY BROCKIE: That must have been really horrible for you, yeah?
YVONNE INGUZ: It's really difficult.
JENNY BROCKIE: Really horrible?
MORGAN PHILLIPS: Yeah, it was.
JENNY BROCKIE: Marmingee, I want to talk to you because you and your partner Geoff live in Fitzroy Crossing. Now you care for three boys who have Foetal Alcohol Spectrum Disorder. Does any of what you're hearing sound familiar to you?
MARMINGEE HAND: It sure does, in relation to Morgan, not only that we also looked after a 17 year old daughter that we raised, these are my sister's children, young Tristan sitting there. We didn't know about FASD until Tristan came to live with us and he was four months old.
JENNY BROCKIE: And Tristan's your nephew, your sister's child?
MARMINGEE HAND: Tristan's my nephew but he's my son because I raised him from when he was four months old.
JENNY BROCKIE: Hi Tristan.
TRISTAN McCARTHY: Hi.
JENNY BROCKIE: Thanks for coming, really good to have you with us tonight. Now we've seen you in a documentary that was made a couple of years ago?
TRISTAN McCARTHY: Mm-mmm.
TRISTAN McCARTHY: I am 12 years old, I live in Fitzroy Crossing. My dog’s name is Specks and my dog lives with me.
SUSAN, TRISTAN’S BIRTH MOTHER: Well in my way if I was looking after him, I was a piss-tank, couldn’t look after him and"¦ gave him to my big sister to look after so he talk very well. In my problem, I was drinking when I was carrying with him and he got a slow mind, he thinks like he is six years old, you know.
TRISTAN McCARTHY: S"¦ T"¦ E"¦ R. Mr Jay is with me all the time. Sometimes school is hard and a bit boring. I wish I can be a policeman just when I grow up. Just catch bad guys and lock 'em away in jail. Nah, I’ll stay as a policeman"¦if I be "¦. I just want to be normal first. I just want to be normal.
JENNY BROCKIE: How old are you now Tristan?
TRISTAN McCARTHY: Ah, 14.
JENNY BROCKIE: Okay, and do you still go to school?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: What's school like?
TRISTAN McCARTHY: Fun.
JENNY BROCKIE: Fun? Yeah, do you find some things difficult at school?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: When Morgan was saying she finds numbers hard, do you find numbers hard sometimes?
TRISTAN McCARTHY: Oh, yeah.
JENNY BROCKIE: Yeah. Geoff, how does Tristan cope with everyday things?
GEOFF DAVIS: Um, in most cases really well. He's a wonderful kid. He has learning difficulties and that's been recognised by the education system and that's, that was done fairly early on which was good. And he's had a support person with him for just about all the time that he's been going to school.
We were very lucky that when he was in, I think it was preschool, not preschool, day care there was a lady from New Zealand who was aware of these sort of things and actually put in a report to get support for Tristan. But she said to us, came to Marmingee and I and said you've got to sign this, have a read of it and sign it, she said, but don't get angry when you read it because we have to make it really bad to be able to get the support that's necessary.
Tristan 90 percent of the time is terrific, 10 percent of time he faces problems. When his anxiety levels get high because he can't do things and because he gets frustrated or"¦
JENNY BROCKIE: What sort of problems - what sort of things happen?
GEOFF DAVIS: I'm very proud of him the fact that he answered your questions tonight because quite often when put under that sort of pressure and the anxiety builds, then the problems arise.
JENNY BROCKIE: You did really well by the way, it was really good.
GEOFF DAVIS: Tristan struggles with reading and writing and all of those sort of things, he does struggle in that area, and he also, because he stutters a bit, he has a problem with speaking and sort of being public quite often sort of the puts him under, under pressure and with anxiety. Anyhow, we got him"¦
JENNY BROCKIE: Don't say it, don't say it, he's doing really well.
GEOFF DAVIS: We, we went to, we had, we got invited to a school night, I didn't know that he'd been learning dancing with the teacher and he did a three minute dance up in front on the stage in front of about "¦
JENNY BROCKIE: Now you're embarrassing him?
GEOFF DAVIS: About 100, but with it was a solo, it was totally solo, not one of the moves was wrong.
JENNY BROCKIE: We meet get you to do that later, okay, just warning you, maybe later. You wanted Tristan here with you tonight, didn't you, why? Why did you want him here in the room for this discussion?
MARMINGEE HAND: Well I guess for us it was just people to know and understand what a FASD child looks like and also knowing and understanding about FASD because it is a new area for all of us to understand it. And"¦
JENNY BROCKIE: Can you explain a little bit more about everyday things, the kind of everyday things that Tristan struggles with?
MARMINGEE HAND: Every day I have to remind the boys to have a shower at a certain time, it's like when they wake up in the morning, like well I've had two normal children that automatically go and have a shower, brush their teeth and do all of those normal things that normal children do.
JENNY BROCKIE: This is what similar to what were you saying Morgan, yeah? Just the difficulty of remembering unless you have the routine?
MORGAN PHILLIPS: Yeah.
JENNY BROCKIE: Are there many kids with foetal alcohol problems in the Fitzroy Valley?
PROFESSOR ELIZABETH ELLIOT: All the children born in 2002 and 2003 and each of them have had a four day examination by a multi-disciplinary team.
JENNY BROCKIE: All the kids in the valley?
PROFESSOR ELIZABETH ELLIOT: In that age group, in the region, 45 different communities in the valley because we'll felt that the community invited us in to help with this study we felt that unless we can document a problem, it's very difficult to persuade the Education Department, the Health Department that we need services.
JENNY BROCKIE: And have you discovered the results of that survey yet?
PROFESSOR ELIZABETH ELLIOT: We're about to publish those results and we know, for example, that 55 percent of children in that age cohort were exposed to high levels of alcohol throughout the pregnancy. So that might be, what, 10 or 15 drinks a day in some cases. And we know therefore that there's a big group who is at risk.
JENNY BROCKIE: Claire, you've been diagnosed with Foetal Alcohol Spectrum Disorder. What's life like for you?
CLAIRE DULEY: Um, it's really difficult. I mean every day is a constant struggle because I get very angry, very frustrated and it's just never ending.
JENNY BROCKIE: How often do you feel angry?
CLAIRE DULEY: All the time basically.
JENNY BROCKIE: Do you?
CLAIRE DULEY: Yeah, it's, you know, I have a very short fuse and you know, anything can trigger it off. I get sensory overload.
JENNY BROCKIE: And when you listen to what Morgan was saying earlier, did you relate to any of that, did you feel similar to any of that?
CLAIRE DULEY: Yes, I always knew that I was different as a child, like I've been diagnosed with ADD, ODD, because I was diagnosed with Foetal Alcohol Syndrome at 15 and I always knew I was different and that was the hardest part.
JENNY BROCKIE: So when you found out that you had Foetal Alcohol Syndrome, what was that like for you?
CLAIRE DULEY: In a sense there was relief because like finally I knew that there was a reason behind the way I was. But at the same time I was very sad and frustrated knowing that I could never, you know, be the normal person I guess.
JENNY BROCKIE: And I just want to emphasise how impressive you are, because I know how hard this is for you, isn't it?
CLAIRE DULEY: Yeah it is.
JENNY BROCKIE: And the same for you Morgan and for you Tristan as well, yeah? Neroli, you've been Claire's foster carer for nine years, what's it's been like living with what she just described?
NEROLI ENDACOTT: The biggest challenge of my life. I actually had Claire and her brother in the initial stages and two of them together was like living with total chaos. They actually came to me for a weekend and I recognised what I believed that they had and I went scouting around to doctors and paediatricians and anybody that wanted to listen, or didn't want to listen, to try and get them diagnosed. So that was, in the end it was like I was trying to educate the educators.
JENNY BROCKIE: So you'd come across it before?
NEROLI ENDACOTT: Absolutely.
JENNY BROCKIE: You saw the signs?
NEROLI ENDACOTT: Because there was always these children that you knew were different from the rest and so you had to help them differently than the normal run of the kids and so it was quite easy to see. So.
JENNY BROCKIE: And Claire, you wanted to be here tonight as well?
CLAIRE DULEY: Yeah.
JENNY BROCKIE: To talk about this, I know, and we have a recording of you getting very angry recently and you're okay "¦
CLAIRE DULEY: Yes.
JENNY BROCKIE: "¦ for us to play that. Just to show what it's like for you as much as anything else.
CLAIRE DULEY: Yeah, definitely.
CLAIRE DULEY: I don’t care.
NEROLI ENDACOTT: Are you going to blame me or are you going to take responsibility for your actions? You just yelled and screamed in a shopping centre, do you want to carry on and do this Claire or you not.
CLAIRE DULEY: Carry on and do what.
NEROLI ENDACOTT: Get the things that you came here for.
CLAIRE DULEY: Yes, that’s what I came here for and you stuffed it up.
NEROLI ENDACOTT: No, you are by your abuse.
CLAIRE DULEY: You love to push my buttons to see how far you can push me so you can be in control and I am not having that any more, not having it. It’s finished. It’s not. Shut up.
NEROLI ENDACOTT: The police will come soon Claire.
CLAIRE DULEY: I don’t care anymore – alright - this is what you pushed me to.
NEROLI ENDACOTT: No Claire, your pushing yourself.
CLAIRE DULEY: This is what you pushed me to.
NEROLI ENDACOTT: Fine.
CLAIRE DULEY: Nine fucking years. Do you want me to put you in hospital because I will do that. You bitch, you fucking bitch. I fucking hate you. I’m not living with you anymore. Fuck off and get out of my life, this is your very last day with me and you pushed me to the bitter end.
JENNY BROCKIE: How often do you feel like that?
CLAIRE DULEY: Um, almost daily. Like just anything can trigger it off. It can just be from the most stupid, most simple thing, you know, my anger escalates so quickly and I, I'm just not able to calm myself down and that's what makes it really hard.
JENNY BROCKIE: Tracy, you're Claire's mum?
TRACY DULY: Yes.
JENNY BROCKIE: How much did you drink when you were pregnant?
TRACY DULY: Well I didn't know I was pregnant till I was three months pregnant with both my children but even throughout my pregnancy I did drink. I suppose being, not as an excuse but people in Australia do drink a lot.
JENNY BROCKIE: They sure do.
TRACY DULY: It's a drinking society and there wasn't anything really said about drinking.
JENNY BROCKIE: That's what I was going to ask you, did you get any advice about "¦
TRACY DULY: No, none of the doctors said anything to me either.
FEMALE: Can I just ask how many units you were drinking a week?
TRACY DULY: Well I was probably, you mean before I knew or after?
JENNY BROCKIE: Both, before you knew?
TRACY DULY: Right, I would say probably two to three glasses a day and not always that many but around that time.
FEMALE: But fairly continuous?
TRACY DULY: Yes, yes.
JENNY BROCKIE: And why isn't Claire living with you now?
TRACY DULY: She's not living with me now because I could not handle her situation. I just can't handle her situation, Neroli can. It takes a long time for Neroli, I've been there, I've been there at Neroli's place when Claire's had outbursts and even today, you know, we had an outburst too and it takes a long time for Neroli to calm Claire down, you know?
JENNY BROCKIE: I saw Claire though, that when you were listening to that, you were talking to Neroli just now, what were you saying to her about that?
CLAIRE DULEY: I just feel really, you know, embarrassed and bad about it but I always know that, you know, with sensory overload and whatever triggers me off that it's always going to be an on-going thing and even though I don't mean to be like that, it just comes on and that's just a part of me that I can't change.
JENNY BROCKIE: Don't feel bad about it. It's an important part of telling the story of this condition, it's a condition, you know, so don't feel bad about it. Doug, you're Claire's paediatrician, what was your first reaction when Neroli brought Claire to you?
DR DOUG SHELTON, PAEDIATRICIAN: Well, I trained in the era when there was only foetal alcohol syndrome and the spectrum, the continuum of the disorder wasn't recognised, so I was one of those people that Neroli had to educate and I suppose I was reluctant at first.
JENNY BROCKIE: And you were at that stage not so sure?
DR DOUG SHELTON: Initially I wasn't so sure but"¦
JENNY BROCKIE: So what changed your mind?
DR DOUG SHELTON: I think I educated myself and I, with Neroli's urging, just learnt more about FASD and that there was a spectrum and that Claire and that children don't necessarily have the facial features and they look normal, but they can have an incredible constellation of different difficulties in different areas..
JENNY BROCKIE: Can Claire's anger, the anger that she feels, be directly attributed to Foetal Alcohol Spectrum Disorder?
DR DOUG SHELTON: I think it's probably a little bit more complicated than a simple yes or no answer in that one of the big problems with FASD is that people have difficulty with self regulation and they do that from when they're tiny babies.
JENNY BROCKIE: Morgan, when we talk about things like impulses, do you feel like that anytime?
MORGAN PHILLIPS: Sometimes, as I've gotten older I've sort of taught myself to handle my anger and what's angering me and walk away from it. So if I am actually angry I walk away. People don't like it but I honestly think it's better for them, maybe.
JENNY BROCKIE: What about friends, what's it like with friends?
MORGAN PHILLIPS: Hard. Basically I've got one friend that's stuck with me because she struggles with schooling as well. Would be probably the only reason we're still friends.
JENNY BROCKIE: What about you've Claire, friends, what's it like with friends?
CLAIRE DULEY: Yes, it was like particularly in school very difficult. I'd like make friends but then like I'd do something or say something and that would make them think, well, what's sort of wrong with you or you're weird so it was always hard keeping friends. But I also had a real, like one loyal friend who'd also stuck by me when I was wasn't there for her. But otherwise, you know, actually keeping friends, that was the hardest thing.
JENNY BROCKIE: Tristan, do you have friends?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: Yeah, good friends?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: Yeah, good.
GEOFF DAVIS: Tristan, it's interesting the discussion the spectrum is really a spectrum. Tristan, for instance, doesn't have the same anger problems that some people have, whereas the two boys that we've got, just listening to your tape, one of the boys that we've got, he reacts exactly the same. Tristan's not like that at all, totally different, he has different difficulties in different areas. So that's, I think, part of the problem, nothing ever the same.
JENNY BROCKIE: That's why it's called a spectrum disorder I guess because it covers so many different kinds of things. Andrew, when you were raising problems, what were you being told?
ANDREW PHILLIPS: Occasionally we had mention of ADH and one of the issues we had with school was that she didn't have outbursts and they said look, if she was trouble and if she threw the chair the at the teacher she would have had all the help she would want.
JENNY BROCKIE: Well that's not encouraging, is it? That's encouraging entirely the wrong thing.
ANDREW PHILLIPS: Because, yeah "¦
NEROLI ENDACOTT: That's true because Claire was - her brother was noisy and he was disruptive whereas Claire was a very, how would you say, quite and vindictive?
CLAIRE DULEY: Vindictive.
NEROLI ENDACOTT: They thought she was doing her work.
JENNY BROCKIE: So very different behaviours from one person to another?
NEROLI ENDACOTT: But the school was actually got funding to help both the children. But sadly, it didn't happen, they were still top of the list if anything went wrong and we had a talk at the school. We invited all the teachers there so that they could learn about it, not one person turned up.
JENNY BROCKIE: Wow. Okay. Courtney, you're fostering a six year old with Foetal Alcohol Spectrum Disorder, what was it like for you trying to get a diagnosis?
COURTNEY: It was very hard but I think we just got really lucky in the end coming across the paediatrician who knew something about it.
JENNY BROCKIE: You had a doctor who told you to go to a parenting course, is that right?
COURTNEY: I did, I was told to go and take some parenting courses.
JENNY BROCKIE: What sort of things had the six year old been doing?
COURTNEY: Very, very active, no impulse control at all, no understanding of personal safety for themselves.
JENNY BROCKIE: A kitchen burnt down?
COURTNEY: A kitchen was burnt down, yes.
JENNY BROCKIE: You were run over?
COURTNEY: I was, the children were just hopping in the car, he hopped in his seat, I walked around the car and in that five seconds he had hopped over the front and released the hand brake and I was run over.
JENNY BROCKIE: So did you feel your parenting was being questioned much?
COURTNEY: Very much so, very much and even until just very recently that has continued, those feelings.
JENNY BROCKIE: And what did you know about the birth mother's drinking history?
COURTNEY: Nothing at all to start with and then a few years into our relationship she told me that she drank most days of her pregnancy and the father confirmed that that was the case, yeah.
JENNY BROCKIE: Tell me, what was it like getting your daughter diagnosed, how difficult was it?
TAMMY PENNA: It was very difficult. I - a friend of mine in South Australia who is a social worker, she actually rang me one day and she asked if I drank alcohol when I was pregnant and I said I did, and she said well, go and Google this and I Googled and as soon as I read the information I knew straight away that that's what it was.
JENNY BROCKIE: Like Yvonne?
TAMMY PENNA: Absolutely, absolutely, and I started ringing around trying to find out what the next step is, you know? I rang a number of psychologists and one psychologist that I spoke to said to me that basically they're diagnosing Asperger's because that's the only way that they'll get supported.
JENNY BROCKIE: So you don't get the support if it's foetal alcohol?
TAMMY PENNA: No, and I went to Disability Services Queensland and basically they said that she had an intellectual impairment and not an intellectual disability and that she doesn't qualify for support with an intellectual impairment.
JENNY BROCKIE: Courtney, you're also fostering a four year old, I mean you've got three altogether, is that right?
COURTNEY: That's right.
JENNY BROCKIE: And the four year old is the sister of the six year old?
COURTNEY: That's right.
JENNY BROCKIE: Who's also just been diagnosed?
COURTNEY: Just last week.
JENNY BROCKIE: Last week with Foetal Alcohol Spectrum Disorder. Why was it so important to you to get that diagnosis?
COURTNEY: She's supposed to go to school next week so we're heading into working with the Education Department, trying to get her extra support. The day care where she is at the moment needs a diagnosis to get her an aide because they can't facilitate her learning and manage the rest of the class because of her lack of impulse control.
JENNY BROCKIE: And is her behaviour similar to the six year old?
COURTNEY: It's becoming very similar. She's not as violent, like her outbursts aren't as big but maybe that will come in two years time.
JENNY BROCKIE: And there's a younger child as well?
COURTNEY: A two year old, yes.
JENNY BROCKIE: Who isn't affected?
COURTNEY: At the moment we feel that that child is developing very appropriately.
JENNY BROCKIE: And how marked is the difference between that younger child and the other two?
COURTNEY: The two year old now has probably cognitively surpassed the four and the six year old. Developmentally doing things that are appropriate for his age and things like that.
JENNY BROCKIE: Elizabeth, given your own diagnostic work, how well acquainted do you think the average doctor is with Foetal Alcohol Spectrum Disorder?
PROFESSOR ELIZABETH ELLIOT: Many doctors and nurses and other health professionals were totally unaware of it until recently. We've done surveys of health professionals in Western Australia, we know that they don't understand how to make the diagnosis. And it's not a simple diagnosis to make, it is a diagnosis of exclusion so you've got to make sure that the children haven't got another syndrome, a chromosomal abnormality or some other cause for their developmental problems.
JENNY BROCKIE: Do you think some doctors would be unaware of it all together?
PROFESSOR ELIZABETH ELLIOT: I think many of them are unaware of it all together and resistant to actually acknowledging that it exists.
JENNY BROCKIE: Why?
PROFESSOR ELIZABETH ELLIOT: I think many doctors, doctors we've interviewed have said that they're concerned about stigmatising the mother and children; that they don't know how to make the diagnosis, they don't know what to do with the children, what the treatment is or where to refer the child. So I think there's "¦
JENNY BROCKIE: It's a difficult conversation to have, isn't it?
PROFESSOR ELIZABETH ELLIOT: It is a very difficult conversation, although if you speak to mums and foster mums, as we've heard, they're often very relieved to have a diagnosis.
JENNY BROCKIE: And how confident can you be of a diagnosis, given that there's overlap with a lot of symptoms of other things?
PROFESSOR ELIZABETH ELLIOT: Absolutely. These symptoms that we're hearing about, such as attention deficit, hyperactivity disorder, aggression, other obsessional compulsive disorders may be seen in children with a whole range of developmental problems. So we've taken the tack that we can say there's nothing else to explain this, there is alcohol exposure and this child has functional problems in at least three domains of central nervous system dysfunction.
JENNY BROCKIE: Barri, what do you say to women who might have been binge drinking without knowing they were pregnant?
DR BARRI PHATARFOD: Yes"¦
JENNY BROCKIE: People like Tammy?
DR BARRI PHATARFOD: That's a difficult one because most of the time, especially in planned pregnancies, women find out they're pregnant quite early, there are women who don't find out they're pregnant until say much later, I think you were talking about it beforehand.
JENNY BROCKIE: Eight weeks?
DR BARRI PHATARFOD: Eight weeks, ten weeks and that's not uncommon, and it's tricky because on one hand we're saying, the current guidelines say no alcohol during pregnancy whatsoever, but even though you've been to your cousin's wedding and your friend's 30th, oh that's all fine, you know don't worry you haven't done anything wrong because it's after the fact and you don't want to cause them anxiety.
PROFESSOR ELIZABETH ELLIOT: Some studies suggest that 49 percent of pregnancies in Australia are unplanned so that makes it very difficult. But I think that we've got to give a clear message, but we've got to try not to create over anxiety in women where it's unnecessary.
JENNY BROCKIE: How does alcohol exposure in pregnancy compare to other drugs, being exposed to other drugs in pregnancy?
PROFESSOR ELIZABETH ELLIOT: Well fortunately in Australia we don't see nearly as much in the way of heroin and methadone and cocaine use as they do in the United States. I've just come back from a meeting at the WHO and there's no doubt that alcohol has much more severe effects on the developing brain than these other drugs.
JENNY BROCKIE: And lasting effects?
PROFESSOR ELIZABETH ELLIOT: Lasting effects.
JENNY BROCKIE: I mean you hear about the other drugs, you hear about the withdrawal, you don't necessarily hear about problems beyond that.
PROFESSOR ELIZABETH ELLIOT: That's right. I mean we've got very good evidence that alcohol is toxic to the developing brain.
JENNY BROCKIE: So more damage than other drugs?
PROFESSOR ELIZABETH ELLIOT: More damage than other drugs.
MAN: It was only two years ago that the guidelines said it was two glasses of wine a day was okay. But I mean I don't agree with anything, I agree with the zero tolerance, but two years ago they said two glasses of wine a day was fine in pregnancy.
PROFESSOR ELIZABETH ELLIOT: Exactly, and I think that's - what we've tried with the guidelines in 2009 is to make a very clear message so that at least people know, and this is one of the difficulties, women, doctors say, some doctors say but we can't ask women about alcohol use in pregnancy.
JENNY BROCKIE: Tonight we're talking about drinking alcohol and pregnancy. Patrick, you're a Public Guardian in the Northern Territory, where do some of the kids that you see who have foetal alcohol problems end up as adults?
PATRICK McGEE: Well they end up in the justice system.
JENNY BROCKIE: Can you give an example of how that happens? Like just"¦
PATRICK McGEE: Sure. So you've got the a kid on a community, so by the time they're 17 they've had a number of outbursts like Claire's and they've impulsively clocked the local copper and have done it one too many times and that's it. So they come into the justice system and they come before the same Judge who now has seen them three or four times.
There are very few judicial options for Judges to exercise and so they end up in our prisons. And in the Northern Territory those prisons happen to be maximum security prisons because that's the only type of prison that there are. In Western Australia there's a particular piece of legislation which governs how people with these types of cognitive impairments are dealt with and they are, you know, treated in a way that is different to any other person who comes before the justice system.
JENNY BROCKIE: So do you think that could partly explain the over representation of indigenous people in prisons in Australia?
PATRICK McGEE: It certainly explains the over representation of indigenous people with cognitive impairments in prisons, absolutely. I think there's a larger issue there.
JENNY BROCKIE: Lorian, you're from central-western Queensland. You've been running workshops on foetal alcohol problems in the communities you visit. What do you think, Lorian?
LORIAN HAYES: I actually agree with that. You've got children who are chronologically 18, and developmentally they might be 12 or 13. Their peers are 12 - and 13-year-olds, so they will interact with these younger children and get into trouble because they're 18.
JENNY BROCKIE: Courtney, I know you're worried about this, aren't you, with the 6-year-old - you're worried about him getting into trouble when he gets older?
COURTNEY: I do. Just that he's so loving and compassionate. I always joke that he'd be the getaway driver, because someone would talk him into it and he would go along with it.
JENNY BROCKIE: Geoff, how are you feeling about Tristan's future?
GEOFF DAVIS: Well I think it varies. Sometimes when Tristan's functioning well and he's a master potter for instance.
JENNY BROCKIE: A dancer and a potter, Tristan?
GEOFF DAVIS: Yeah, he's made these wonderful pots that he gave one to James Fitzpatrick who is the paediatrician who's worked with Tristan and those times you think, there's a pathway. But then when things go pear shaped, the pathway disappears very quickly. And the whole sexuality thing is another issue which is, and then you throw consumption of alcohol, sexuality, all those things that start to come to the surface when you're 14, 15, 16, 17, people without Foetal Alcohol Spectrum Disorder have enough problems dealing with those sorts of issues, young people - these guys that don't have any brakes on.
JENNY BROCKIE: Marmingee, what sort of support have you had for Tristan?
MARMINGEE HAND: In relation to what Jenny?
JENNY BROCKIE: Financial support, disability support, any kind of support really?
MARMINGEE HAND: None, none whatsoever.
JENNY BROCKIE: Now Foetal Alcohol Syndrome or Foetal Alcohol Spectrum Disorder isn't recognised officially as a disability, is that right?
MARMINGEE HAND: That is correct, not in our country. We've taken on this young fellow because I was thinking of stolen generation in relation to our family and we didn't want Tristan to be put somewhere else. That's a decision that both Geoff and I made in relation to taking care of Tristan.
JENNY BROCKIE: And others?
MARMINGEE HAND: Yes, and the others we have looked after, so"¦
JENNY BROCKIE: Do you qualify for any respite care? Do you and Geoff get respite care at all?
MARMINGEE HAND: No.
JENNY BROCKIE: Carers allowance, anything like that?
MARMINGEE HAND: No.
JENNY BROCKIE: Nothing?
MARMINGEE HAND: No.
JENNY BROCKIE: Yvonne, do you qualify for any disability services or any kind of support with Morgan?
YVONNE INGUZ: Morgan is 4 point symptoms of the IQ, they cut off at 70, Morgan's 74.
JENNY BROCKIE: This is disability cut off?
YVONNE INGUZ: Everything.
JENNY BROCKIE: Has this happened to you too?
MARMINGEE HAND: To Tristan.
JENNY BROCKIE: So where does he fall?
MARMINGEE HAND: He sits on 71.
JENNY BROCKIE: 71? So he's one over.
MARMINGEE HAND: Right on the"¦
GEOFF DAVIS: Tristan on his good day functions as, you know, his age bracket. When he's on a bad day, when he's got a stress, when he's got anxiety, a lot of those things, it drops dramatically. So if you get him on a test on a good day, everybody goes oh, he's fine.
TAMMY PENNA: That's one of the problems that I had with my daughter as well in that some days she could function very well and then on other days she would, she would do quite, quite bad.
JENNY BROCKIE: And now you're looking after her children?
TAMMY PENNA: Yes.
JENNY BROCKIE: Do you get any support for doing that?
TAMMY PENNA: I do for that. I didn't get my support with my daughter growing up, but I do with my two granddaughters.
JENNY BROCKIE: And you're looking after them full time?
TAMMY PENNA: Yes.
JENNY BROCKIE: Neroli, support for you for Claire?
NEROLI ENDACOTT: We eventually did get the, for Claire the carers support and Claire on the disability but that was a very disturbing and difficult time for Claire.
CLAIRE DULEY: She kept saying to us, you know, show us proof that you have a disability and, um, because this was in a CentreLink meeting and I told this lady well, because my mum was three months pregnant with me when she got married to my dad and at the time there were photos of - in each photo there was a glass of wine in every photo when she was three months pregnant. And then the CentreLink lady turned around and said: "Well just because you've mum had a glass of wine in her hand doesn't mean you have a disability."
NEROLI ENDACOTT: And prior to.
JENNY BROCKIE: So you had to justify yourself?
CLAIRE DULEY: Exactly.
JENNY BROCKIE: What a horrible thing?
CLAIRE DULEY: And she was still saying well, that's not good enough, show us proof and we have, you know, papers this high.
NEROLI ENDACOTT: And others, yes.
CLAIRE DULEY: With all the proof that was there and it still wasn't.
JENNY BROCKIE: Doug, this business of having to convince people, prove that you're the"¦
DR DOUG SHELTON: Well even once the diagnosis has been delivered it doesn't strictly qualify under CentreLink guidelines or Education Department guidelines, I've had to argue backwards and forwards with various organisations to try and get some level of support.
CLAIRE DULEY: The Queensland health system I think overall has let me down. I mean we've gone to Disability Services, you know, and they said that they could do things to help but then it ended up being too complex and then, you know, we turn to CentreLink, too complex and it's kind of like because it is classed as an invisible disability, I mean you look normal and if people can't see past and you know, I've had to ask myself so many times to, you know, the kids who have Down Syndrome or Spina Bifida, they're able to get help because that's obvious.
JENNY BROCKIE: Because it's obvious?
CLAIRE DULEY: Yeah.
JENNY BROCKIE: Morgan, you're doing the hair dressing course now?
MORGAN PHILLIPS: Yeah.
JENNY BROCKIE: How's it going?
MORGAN PHILLIPS: Yeah, really good. I'm not far off being fully qualified as a hairdresser and I do want to do a lot more in it. I want to do some make up as well. It is going to be a real big struggle for me but I want to do it and I don't really care how long it takes me.
JENNY BROCKIE: And what are the things that you think are going to be most difficult for you to deal with once you're out there doing that job?
MORGAN PHILLIPS: Probably find it when I get there, really.
JENNY BROCKIE: Yeah?
MORGAN PHILLIPS: That's sort of you how it works with me, just find out how hard it's going to be when I get there. I'll just keep going the way I am now.
JENNY BROCKIE: But it's what you want to do?
MORGAN PHILLIPS: Yeah, it is, it's really what I want to do.
JENNY BROCKIE: Claire, what about you, what do you want to do?
CLAIRE DULEY: Well I have been pretty undecisive in the past but I'm thinking towards something like either creating writing type thing, it's something I'd like to do.
JENNY BROCKIE: And what would have made it easier for the two of you do you think?
CLAIRE DULEY: I think that the fact that people can be more receptive and understanding to the fact that even though we look normal, we're not able to cope like other normal people do.
JENNY BROCKIE: What would have made things easier for you Morgan?
MORGAN PHILLIPS: Probably a few more supportive teachers, I guess. Because you've got your family at home which are always going to be there for you and support you, but once you're not there you need that support from teachers, you've just got this one teacher that you can go to but they're not always going to be there.
JENNY BROCKIE: And Tristan, don't hide behind your hat, you said in that film, you said you wanted to be a policeman?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: Do you still want to be a policeman?
TRISTAN McCARTHY: No, changed my mind.
JENNY BROCKIE: No, changed your mind?
TRISTAN McCARTHY: Yeah, changed my mind.
JENNY BROCKIE: Why did you change your mind?
TRISTAN McCARTHY: : Change for like"¦
JENNY BROCKIE: Is there anything you want to be now? You want to do? Job?
TRISTAN McCARTHY: Yeah, I want to get a job from, I want to get a job for a shop, a cafe, yeah.
JENNY BROCKIE: And what do you want to do in the cafe, cook or serve people food?
TRISTAN McCARTHY: Yeah, serve.
JENNY BROCKIE: You want to serve people food?
TRISTAN McCARTHY: Yeah.
JENNY BROCKIE: Well good luck with that. Yeah, good to meet you, thank you so much for coming, really glad you came along. Very glad you came along Claire, thank you so much for joining us. And Morgan, special thank you to you as well, for the three of you actually, I think it's terrific you've been here and round of applause, yeah. We do have to wrap it up here but you can keep talking on-line, go to our website, Twitter or Insight's Facebook page. Thank you everybody.