Kurt is joined by Professor Anita Gibbs; a Professor at the University of Otago, a registered social worker and a regular facilitator of a parent/caregiver support groups for families with children with FASD. They talk about Anita’s experience with FASD which is two-fold and covers both her teaching and research as an academic, and also her lived experience as a parent caring for two boys with FASD. They also chat about FASD in the criminal justice system and ways we may be able to stop people with this invisible disability from becoming entangled in this system.
For more information about FASD, please go to: https://www.nofasd.org.au/
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewee: Anita Gibbs
The copyright is owned by NOFASD Australia.
All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia.
The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.
Anita Gibbs Biography
Anita was born in the UK where she was trained as a social worker. She completed her PhD at the University of Bristol and, after postdoctoral research at the University of Oxford, she moved to Otago in 1999. She has taught numerous social work, sociology, and criminology courses since then, with a particular interest in teaching in the area of families. Her research studies have included electronic monitoring, mental health, adoption, transcultural parenting, defining social work research, making social work accessible to sociologists, auto-ethnography, fetal alcohol spectrum disorder and its impact on families, and the scholarship of publication.
Interview Transcript
Kurt Lewis (00:03):
How much do you know about pregnancy and alcohol? The reality may surprise you. Alcohol exposure while in the womb may cause fetal alcohol spectrum disorder in unborn children. It may lead to lifelong physical and / or neuro developmental impairments, such as problems with memory, attention, cause and effect reasoning, and difficulties in adapting to situations. For such an impactful disorder. It is rarely spoken about in the popular media. This podcast will take you behind the scenes to chat with the people who understand FASD. This is: Pregnancy and Alcohol: The Surprising Reality
Frances Price (00:43):
In this episode of NOFASD Australia’s podcast series, we are addressing one of the more problematic issues that can confront parents and carers of youth who have FASD – that of interactions between their child and the criminal justice system We must emphasise, that no-one should assume that every individual with FASD will end up entangled in the criminal justice system. However, when executive functioning is affected, when impulsivity and an inability to predict consequences are evident, this can, and does, occur, and is an issue of real concern in the FASD community. The guest on today’s interview mentions a couple of terms that we’d like to clarify at the outset. One of the terms mentioned is ‘abelist’. This refers to the notion of ableism which is discrimination and social prejudice against people with disabilities, based on the belief that typical abilities are superior. This reflects a belief that people with disabilities are inferior and focuses on the disability as defining the person.
Frances Price (01:55):
Another term that is mentioned is “Banksia” – this refers to the Banksia Hill Juvenile Detention Centre in Perth, Western Australia. A specialist prevalence study was conducted there which revealed that 36% of the youth in that detention centre had FASD. This is a much higher incidence of FASD than has been recorded in any other prevalence studies conducted globally on general populations. We hope you find information shared in this podcast useful – and do remember that if this topic raises particular concerns, NOFASD’s Helpline service is available 7 days a week in Australia by calling 1800 860 613. It’s now my pleasure to introduce our interviewer, Kurt Lewis, who will introduce you to his guest for this episode.
Kurt Lewis (02:55):
Welcome, welcome ladies and gentlemen to this brand-new episode of Pregnancy and Alcohol: The Surprising Reality. My name is Kurt Lewis, your friendly neighborhood podcaster. And today I’m interviewing another magnificent guest. In this episode, I’m joined by a Professor of Social Work from the University of Otago in New Zealand. She’s not only a trained and registered social worker, she is a very passionate FASD advocate. You may recognise her name because she’s written a number of research articles and even newspaper articles, demanding better treatment for people with FASD in the criminal justice system. I have the absolute pleasure today of introducing Professor Anita Gibbs. How’s it going? Anita?
Professor Anita Gibbs (03:45):
Oh, Kia ora koutou – hello everyone. It’s a beautiful day here in Otepoti – Dunedin, and it’s lovely to be able to chat to you from New Zealand. So, we are looking good.
Kurt Lewis (03:53):
That makes a change. I hear it’s very cold in New Zealand and me being Australian and all its – I probably have a different sense of these things, I suspect! Anita, you originally came from England though – although you are now a very proud new Zealander. If anyone has ever seen Anita’s backgrounds, they’re always lovely shots of the New Zealand countryside or Lakeside, whichever takes her fancy. So, what drew you to this country? What do you love most about New Zealand?
Professor Anita Gibbs (04:21):
Yeah, I think there were two things – I was looking for work where I could communicate my skills as both a social worker and as, a sort of criminal justice specialist in social work. So, like a kind of criminologist, but with a very strong social work perspective, I could do that here better than in the UK at the time. But also, I got a bad case of ‘New Zealand-itis’ having traveled here on holiday – and I just fell in love with the, the kind of more chilled aspect, the quality of life, and over time, the quality of life, which I think is the open spaces and beauty, which is very good for a neurodiverse family. So, I also like the fact that you can basically meet the Prime Minister or someone of importance, pretty much anywhere – in a cafe or on the airplane waiting at the airport – and you can have a chat with them, and you can tell them exactly what you wish to tell them if, uh, you want some changes to happen.
Kurt Lewis (05:05):
That’s very unique kind of thing, because we can’t do that in Australia. And mainly because yeah, uh, just so far away, I mean, New Zealand is just a probably much smaller country than Australia is, in regards to, you know, land mass and, you know, just everything’s so far away from each other. – you just, we struggle to see anyone really…
Professor Anita Gibbs (05:23):
And population, of course,
Kurt Lewis (05:25):
<laugh> population, yes, bigger population, but getting down to the nuts and bolts of things – Anita, you are a Professor of Social Work at the University of Otago. What drew you to this area of study and research in the field of social work? What drew you there?
Professor Anita Gibbs (05:41):
Well, again, I probably emphasise the sort of social work and criminology combo – because a lot of my teaching is in the criminology area, but it’s informed absolutely by my practitioner focus. My own personal life in a sense, got me into social work. I’d had a challenging upbringing, I had empathy and I felt I could offer hope to others struggling. shall we say when I first got into social work. But as I studied it more and really enjoyed studying, I wanted to apply those theories, frameworks and models to real-life problems that people live, day to day. So, I was basically a practitioner first, you know, with a social justice heart, but I did more research and I wanted to then start using that research to highlight the real lived experience of people who were marginalised. So, most of my research is focused on, you know, marginalised groups, predominant in the criminal justice system and wanting to apply that to decent, sort of real-life strategies and interventions.
Kurt Lewis (06:32):
That’s very important work, especially marginalised groups. How did you first learn about FASD?
Professor Anita Gibbs (06:38):
Well, it does segue nicely into the FASD – in 2005 and six, my husband and I were assessed and approved to adopt, either locally or overseas. In the end, we went overseas to Russia and basically, during that time of considering adoption of our beautiful Russian young men, now, we went down a kind of, wee rabbit hole, you know, the FASD rabbit hole where you’re looking for three facial features and you go like, nah, they don’t look like they’ve got three facial features. That’s pretty much the nub of it. Of course, we know that to be very small percentages – 10%, perhaps at most with 3 sentinel facial features. We knew when we first met our lads, that they had a minimum of ADHD. We just totally could sense that – they were aged two and three – and they were hyperactive and impulsive from absolutely.one day one. And so, we were never surprised that they got an ADHD diagnosis, not too many years into coming back to live with their forever family. Uh, eventually they got the FASD diagnosis and more recently, because we’d always suspected autism for our youngest, that was confirmed, just a few months back.
Kurt Lewis (07:36):
Taking care of children with FASD has kind of given you a very, you know, perspective on as kind of, not only as a professional, but as a carer as well.
Professor Anita Gibbs (07:47):
Yes.
Kurt Lewis (07:48):
So, Anita, you’ve done a lot of work for advocacy, I should say for people with FASD This includes writing many articles, demanding better treatment for people with FASD in the criminal justice system. I’ve read a couple of your articles. They’re really good. You know, they take the professional perspective as well as, you know, the carers perspective and the people with FASD perspective very well and puts it into an informed opinion with information to back it up. What draws you into being an advocate for this particular topic? I know that you you’ve mentioned that you’ve got the, you know, the carer outlook as well as the professional. What drew you particularly into amalgamating all this – into advocating for it.
Professor Anita Gibbs (08:28):
Well, I think ultimately, I was forced into it in some ways, because of all the combination of those many hats. I mean, I wouldn’t have described myself as a natural advocate many years ago, but I effectively – what happened to our family, or what did not happen, meant that I had to become an advocate. I mean, we were asking for helps and supports over the years for our young men, our lads, when they were younger; as soon as they reach puberty, of course, things get a, a whole lot worse and chaotic. Uh, we didn’t get assessed early enough. And in particular, with my youngest son who’s had most involvement with the youth justice processes is, you know, his welfare and sensory needs and communication needs ultimately were not catered for early enough. So, we kept asking and asking, of course during that time, I would upskill myself immensely, gleaning as much knowledge as I could, finding out the lie of the land, trying to, you know, understand all the aspects of brain domains.
Professor Anita Gibbs (09:16):
And my own son, youngest son, was starting to get into trouble, and he was becoming exploited, victimised, and essentially became entrenched in the youth justice system. And I realised during that time, so many professionals, court officials support workers didn’t have a clue about FASD, didn’t know what I was talking about and even neuro-disabilities more broadly. So, they basically, classically punished my son over and over with unreasonable expectations and complex plans that he couldn’t ever follow. So, we had, you know, several years of chaos, with his needs not being met, and to ensure his wellbeing and, you know, positive growth potential. you know, I had to advocate – I had to use my position as a social worker, a criminology researcher. I had privilege in that respect because I had time, actually, to undertake extra research and education. I had time to develop some interventions and supports.
Professor Anita Gibbs (10:05):
I had time to run workshops and make a difference. I had time to write those newspaper op-eds and, and assorted commentaries. So, I think that all coalesced into me being able to, not by choice necessarily, but eventually by choice, because I was almost like the last person standing. So, I had a position where I could actually reach all these different media articles, newspapers, you know, soundbite, radios, whatever. I had an opportunity. So, I had, you know, I had a privilege that I had to operate because of my vast knowledge, having done 30 years research in criminal justice and welfare, and looking a lot at mental health as well, coercive practices across those systems, understanding those systems intimately, and then seeing how they were played out in my own lived experience. And for many, many others, obviously who were having that mirrored experience. Sometimes I’ve seen good practices, obviously in my advocacy and seen that people do well and I try to encourage that, and want to see more of that. And then sometimes poor practices. But I basically want to highlight in my advocacy how we can move forward and, you know, understand vulnerable youth better, who are being criminalised quite often because of their neurodisabilities.
Kurt Lewis (11:16):
I find that incredibly frustrating, that we are doing that. We have all this information now it’s the 21st century. We should be doing better, especially for people with FASD who are at a disadvantage at every level of the criminal justice system.
Professor Anita Gibbs (11:28):
Mm. Correct.
Kurt Lewis (11:30):
And it just, I imagine you’ve seen a lot of frustration, but have you seen any positive progress when it comes to in New Zealand, on pressing the issue in recent times? Has there been any positive progress?
Professor Anita Gibbs (11:43):
Thinking back in fact, how people become entrenched and involved in criminal justice systems. When I think about that kind of predictable trajectory – school to care to prison pipeline. And we’re seeing that mirrored in some of our survivor stories during our current Royal Commission for Abuse in Care inquiry, you know, where there’s three or four generations. And what you’re seeing is the unidentified group with neurodisabilities who are incredibly vulnerable and then they get locked-in to the criminal justice system, you know, through failing education or education, failing them. I must say that, absolutely, education failing them. They’re not picked up early enough, are they to, to get the support that they need? And there’s a certain group of people. And so, it’s whether or not we can actually highlight what’s going on for a certain group of people. And there’s some great researchers in Australia, Eileen Baldry, Ruth McCausland, Leanne Dowse, I think – and they write a lot about criminalisation process from care to prison pipelines.
Professor Anita Gibbs (12:37):
And they’ve sort of identified, not only is it sort of trauma, not only is it certain factors in terms of being out of home care, it’s those who have cognitive disabilities, it’s those in specialised placements and residential care in particular who have obviously stints in residential placements, whether they’re justice or care and protection, these are our vulnerable children. And you’ve got researchers like that. You’ve got my own experience where I’m sort of pointing out those sort of ableist norms and expectations in society. And we’re trying to educate more broadly to put it out there, to see if we can actually see positive change. And so that those get children get diagnosed earlier. So, what I’ve, I guess I’ve seen in terms of some of the positive progress, I guess, is we had an action plan developed 2016 to 2019. It’s still being operated, even though we haven’t actually updated the plan.
Professor Anita Gibbs (13:24):
A lot of those categories of supports and helps there are actions occurring, and we’ve all been improved in that process. You know, NGOs, individual parents, advocates, individual agencies. We need to see more action systemically of course, but what I’ve seen is that things like we had a, a bill that was going to be far more punitive, it was called the demerit bill, I think it was, for 16 to 18 year olds, some more young ones, and it was going to punish them more basically. And it was brought by somebody who was trying to create this impression that there was just all these feral youth on the streets causing crime. And we know that’s not the case in terms of the statistics. So, loads of us submitted to that. So, lots of those opportunities to submit around FASD in particular and make a point that children with FASD and youth with FASD become criminalised too easily, because their needs are not meant early enough.
Professor Anita Gibbs (14:14):
And then they’re fast tracked, because they’re often in these other circumstances, like out of home care where they’re going to be more surveilled and picked on by the police and more arrested and more tracked to formal processes. So, I’ve seen submissions, I’ve seen websites improved, like the education websites improved to give specific information around FASD. Again, those sorts of websites have had other people in our FASD-can community submit, and give their time, and actually improve those websites to actually talk about real-life practice and strategies for those living with FASD. I’m seeing stuff coming out now about having new residential provisions, potentially in the future, so that children are not locked away in large detention centers or even care and protections centers that are not fit for purpose, that staff are not well trained enough. So, there’ll be changes there, lots and lots of workshops and training, caregiver courses, the development of FASD navigators.
Professor Anita Gibbs (15:06):
We’ve got a few in New Zealand, not many, but specialists who actually are focusing on specifically on helping families get assessments, helping families get ongoing support, helping families be heard, listened to and supported in multi-agency meetings rather than being disbelieved. I’m seeing judges be more aware, giving out sentencing statements and, or decisions, where they’re actually highlighting the need to include FASD or actually use FASD to truly understand the background of the young person coming into the court system or providing, you know, being edicts around being provided communications assistance more frequently for family group conference processes or court processes. Yeah, I mean, I’ve developed my own new course at Otago, which is basically a course on neurodisabilities across health welfare and justice systems. And that course I’ve got some great corrections people attending and other professionals attending, who are taking back materials straight back into their places of work to implement changes.
Professor Anita Gibbs (16:06):
So, it’s fantastic. We’ve had fantastic support from the Disability and Children’s Commission, and there’ve been a whole raft of research projects here in Aotearoa that have got some funding and they’re all underway, like revising the diagnostic guidelines specifically for Aotearoa. So that will take account of our bicultural context, Te Tiriti o Waitangi, the treaty, and the principles behind that, so that we can prioritise better, you know, improve our practice for indigenous Maori as well as improve practice across the board in Aotearoa. Lots and lots of different research data has been implemented or halfway through, more PhD and Master students undertaking studies, my own sort of studies with stakeholders and parents have – just haven’t got time to write it up because obviously you can tell from what I’m saying, I’m a wee bit busy at times! But, um, there have been progress. I mean, obviously we’ve got a long way to go, but it’s good to see between perhaps 2016, when I first started making trips to Canada to learn more and now, I’ve definitely seen progress, but I want a lot more
Kurt Lewis (17:04):
Here’s a random question, but do you think we’ll ever get to the point where the needs of people with FASD will be met by the criminal justices, that they won’t find themselves constantly entangled with it?
Professor Anita Gibbs (17:14):
I think we’re still waiting for our opportunity to have a prevalence study. So, if we can get, you know, of the Banksia kind, if we can get a prevalence study in our youth justice systems, we might be able to then have leverage to talk about the sheer, vast numbers of those with neuro impairments in criminal justice. We still haven’t got FASD as a fundable disability for our disability support services criteria, if it’s a alongside ID or if it’s intellectual disability, or if it’s a alongside autism, yes. That can attract funding. But fundamentally we don’t have core funding for FASD we, even though it’s accepted by the ministry of health as a disability. So, some things have to change. You know, we have to change the culture of New Zealand to recognise the vastness of the problem. And so that includes, you know, the general public doesn’t, it includes not just, you know, people working in the field, it’s the general public who will eventually go, you know, when I’ve done generic talks like to alumni, the University of Otago, it’s ordinary people that come up to me and say, well, I think I’ve got somebody in my family that probably has got FASD and then you see that repeated and repeated and repeated.
Professor Anita Gibbs (18:16):
Then you go, there’s a big, it’s a social problem that we need to address coherently, um, at a bigger level, as well as obviously individuals coming through the criminal justice system, who will be disproportionately likely to have FASD.
Kurt Lewis (18:31):
In Australia, we do fund, or we fund aspects of FASD, the deficiencies rather than the disorder itself. Yet we have not done a prevalence study. We don’t know how the issue is. And there’s still a lot of stigma. There’s still a lot of work that needs to be done. Yeah. That’s, I mean, that’s probably the same with a number of different countries. My last question, my big question. This is, this is the one I ask all my podcast guests – what more could we be doing as individuals, or we could be doing as a whole society to minimize, or remove, disadvantage for people with FASD who may become entangled in the criminal justice system. I’ve I know you’ve mentioned a few. Is there any more you wanted to add to that or reinforce?
Professor Anita Gibbs (19:11):
Yeah. Well, I mean, obviously I’m a great obviously advocate of making a difference across the board. So, it’s that, that prevention, we still need to be doing the whole advertising challenges to alcohol marketing and advertising, and the accessibility to alcohol and the impacts of alcohol, broad, sweeping, and education of the entire population as to the impacts, obviously, the dangers of drinking whilst pregnant. So that’s a broad education, isn’t it? After that I’ve mentioned, we need to accept FASD as a disability. We need to do a lot more early identification. So that’s the preschool stuff, but that means we need preschool teachers – we need social workers, doctors, occupational therapists, speech language therapists, support workers. We need them more trained and knowledgeable. So, in every single curriculum of training, we need at least FASD-101. And for others, who are going to spend a lot of time with children and youth living with FASD, we obviously – they need more intensive training, you know, so that they can actually get to the nub of what it is to live with this disability and what are the best interventions to make a positive difference.
Professor Anita Gibbs (20:06):
And so, then we need to train everyone in the criminal justice system, of course, because that naturally follows. If you’re trying to, first of all, we obviously need to divert the UN Convention General Comment 19, I think it is, for convention of rights of children talks about the fact that we absolutely need to divert from justice processes, those who have FASD, autism, other neurodisabilities. So that needs to be a mission of the police. You know, they really at the outset need to be working really hard to divert children, but of course, if we don’t identify them, it’s difficult to divert them. So, we do need them identified as having neurodisabilities specifically FASD, but then we need all of those criminal justice folks to get up with the play, trained and knowledgeable specifically for FASD and understand the processes of their alienation and criminalisation through the court processes, which is why we need to get them diverted and, and also operate plans of diversion through family group conferences or other ways.
Professor Anita Gibbs (21:00):
So that those plans end up in discharge in court. They don’t end up in convictions. They always end up in discharge. Doesn’t matter how many times they need to keep doing that for youth, so that we don’t actually have any kids with FASD with, you know, serious criminal records before they’re 18. And so therefore they’re at high risk of them being sent to prison if they do one thing post 18. So, people also generally need patience, you know, huge amounts of patience. Caregivers should be training I reckon and should be appreciated for that unpaid labor and love in a sense they’re giving all of their time, but they’re experts in their own, you know, situations. They can train professionals and professionals need to be humble and want to learn from them, because people are generally in the criminal justice system are incredibly intolerant and they get angry when kids just fail a few rules, or break a few conditions.
Professor Anita Gibbs (21:44):
And so, they penalise them and punish them for that, those breakages of rules. Yet we know, as parents, that those children are just more likely to break the rules. It’s just a natural thing, you know, with their impulsivity and their executive functioning challenges. So, we need to stop putting barriers in disabled children’s paths that increase punishment and exclusion for them. We need to stop before they’re getting into trouble, and we need to keep these children in their homes for longer, at school for longer and meaningfully occupied. So, they’re not discriminated, they’re not fast-tracked to being locked up. All of us want the best for our children. So yeah, those are some of the things that I would try and want to see happen on a more regular basis.
Kurt Lewis (22:26):
I definitely think we need more knowledge about FASD there, because the lack of knowledge causes a lot of caregiver stress, as well as it would be difficult to help someone with FASD for someone like a speech pathologist or paediatrician who knew nothing about this disorder.
Professor Anita Gibbs (22:43):
Yeah.
Kurt Lewis (22:44):
That’s really common. That’s, it’s stupidly common, I think in some respects.
Professor Anita Gibbs (22:47):
Yeah, yeah. So, it goes back a lot to base training. So, you know, I’m offering a new course now, it’s not necessarily at the base training level yet, but, uh, it will hopefully filter into base training for social workers and other would be professionals, but we need to see that mirrored across every training establishment for every possible type of profession, more and more, not just an hour on this thing that most people call fetal alcohol syndrome, which is so outdated. As we know, we want to actually have full courses on what FASD is, or certainly, you know, neuro diversion conditions, but really looking at that from a critical disability perspective utterly.
Kurt Lewis (23:21):
And not only that, just as well as law enforcement police, public defenders, prosecutors, that kind of thing should be brought up to speed with what fetal alcohol spectrum disorder is, how it impacts. Because I remember back when 2019, when I – FASD was just another disorder – I didn’t realise what it was. Yeah. I mean, this was me prior to yet to doing this podcast. And I really didn’t understand the connections there. I didn’t really understand what it meant and how it impacts so many different things. Like people who get entangled with criminal justice, it just, it really opens your mind. And it really opens your perspective on and looks at your kind of your actions, how you judge people in a house.
Professor Anita Gibbs (24:10):
Oh yeah.
Kurt Lewis (24:11):
How, you know, the stigma can really hurt people.
Professor Anita Gibbs (24:12):
Mm-hmm yeah. Yeah. And I mean, ultimately, I know we’re, we’re finishing up soon, but you know, when I think about being a parent of children with FASD is that it changes you forever. I mean, sometimes it can crush parents, but more often than not, it helps you become a better person. You become more tolerant of everyone around you. You, things that used to be important are less important. You don’t sweat the small stuff, you just actually embrace the beauty of life around you. And you look for the beauty, always in your children. And you, you try to share that with others and hope that others will join you in that journey of tolerance and inclusivity.
Kurt Lewis (24:41):
Anita, I’d like to thank you so much for coming on the podcast and sharing your knowledge, your perspective, and your energy with the podcast. Thank you so much.
Professor Anita Gibbs (24:51):
Thank you so much. It’s always a wonderful privilege to hang out with you, Kurt, and look forward to other opportunities in the future.
Kurt Lewis (24:57):
I’m sure there will. Thank you,
Professor Anita Gibbs (24:59):
Kia ora.
Kurt Lewis (25:02):
Thank you for listening to this episode of Pregnancy and Alcohol: The Surprising Reality. Please tune in next week for another episode of our little podcast. If you like this podcast episode, then please show your support by leaving a rating and review on iTunes. Every little bit helps. All rights reserved. For more information about FASD, then please go to www.nofasd.org.au
