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Prue Walker

Prue Walker

Focusing on FASD for a positive future​

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Why I take FASD training to the NT

Prue Walker · May 6, 2023 · Updated May 6, 2023

Occasionally, I am asked why I provide FASD training in the Northern Territory, despite residing in Melbourne. It’s a valid question, and the answer involves a backstory that I’d like to share with you. Please note that this narrative is rather lengthy, so feel free to skip ahead if you wish.

Jade Scott, me and Dr Annette Connolly at Monash Hospital, FASD Awareness Day 2022
Jade Scott, me and Dr Annette Connolly at Monash Hospital, FASD Awareness Day 2022

In 2006, I packed up and headed to Alice Springs as a child protection team leader. While it wasn’t my first trip to Alice, having been there for the Pine Gap protests in 1987 and attending a cultural program a few years later, it was my first time living there. The job opportunity was too good to pass up, and I felt it was the right time to make the move from Melbourne with my 6-year-old daughter. Little did I know how challenging it would be and how much I had to learn.

Working in child protection with some of the most vulnerable and disadvantaged families in Australia required skills and understanding that I didn’t have at the time. As a team leader in out-of-home care, I was responsible for children living in either foster or kinship care, many of whom were on remote communities, and staff were often travelling. I was in the office supervising staff, going to court, and doing case plans.

A significant number of children who were placed in out-of-home care had been exposed to alcohol in pregnancy. Back then, paediatricians could diagnose Fetal Alcohol Syndrome (FAS) in children who displayed distinct facial features, as well as met specific criteria related to their growth and cognitive abilities. However, children who did not exhibit these facial features were unable to receive a diagnosis of FAS, even if they had significant developmental and learning challenges. In the United States and Canada, there were alternative diagnoses available for such children. However, in Australia, it would take another ten years before the diagnosis of Fetal Alcohol Spectrum Disorder (FASD) would be introduced.

Children were falling through the gaps. There were no guidelines or policies about how to support children affected by prenatal alcohol exposure. There were few Australian resources available, and child protection workers had no FASD training or access to information.

Looking back on that time, it’s hard for me to recall achievements rather than mistakes. In 2007, the intervention started, and it imposed alcohol restrictions even on communities that did not ask for them. However, being new to the Territory, I did not fully understand the negative impact on Aboriginal communities especially in terms of the loss of self-determination. While there was a reduction in alcohol and safer dry communities for children, income management was demoralising, paternalistic and deeply racist which has now shown to have caused low birth weight babies in Aboriginal mothers affected. Fortunately, I had great colleagues among the Aboriginal Community workers like Dawn Ross, Vicky Haddon, and others, who shared their wisdom and experience, provided support, and gave me honest, valuable feedback so that I could learn from my mistakes.

Following a difficult case involving a child with FASD and conflicting professional opinions, I applied for a Churchill Fellowship to travel to the US and Canada and study models of support for children with FASD in out-of-home care. During my 10-week trip in 2009, I visited First Nations agencies, FASD diagnostic clinics, researchers, and other FASD services. I began my journey at the international FASD conference in Victoria, BC, where I met a few Australians who were active in FASD research and advocacy. After the conference, I visited the Asante Centre in Maple Ridge, Vancouver, and attended a 3-day diagnostic clinic with a multidisciplinary team. Chris Rogan was also there with members of her team from New Zealand, who were undergoing FASD training at the centre. Chris went on to establish the first FASD multidisciplinary team training in NZ.

The Asante team – Julianne Conry, clinical Neuropsychologist, Dr Kwadwo Asante, Audrey Salahub, Krystal Bodaly; and with Chris Rogan and team.
The Asante team – Julianne Conry, clinical Neuropsychologist, Dr Kwadwo Asante, Audrey Salahub, Krystal Bodaly; and with Chris Rogan and team.

During my visit to the University of Washington in Seattle, I had the privilege of visiting the Fetal Alcohol Spectrum Disorder (FASD) clinic, which was managed by Susan Astley Hemingway. Along with Sterling Clarren, Susan had created the FASD 4-digit code, which is a classification system that captures the range of impairments that can occur due to prenatal alcohol exposure. I was impressed by Susan’s clinic data, which showed that the rate of FASD diagnosis among children in care had declined in Washington State, as education about the risks of alcohol in pregnancy had increased.  This reduction was attributed to the increased education on the risks of consuming alcohol during pregnancy. I was also struck by the mandatory warning stickers placed on the back of every bathroom door in places where alcohol was sold – it showed how far ahead the States was in raising awareness of risks of alcohol in pregnancy.

In Seattle, I also had the pleasure of meeting Therese Grant, who pioneered the Parent-Child Assistance Program (PCAP) and Nancy Whitney, the Clinical Director. This program has reduced the incidence of FASD by providing a relationship-based home visitation model for women at high risk of an alcohol or drug-affected pregnancy. I was so impressed by this model, which has been implemented all over North America, and I felt this was something I wanted to bring back to the NT. Therese also introduced me to Professor Ann Streissguth, a co-author on the first paper in the Lancet describing the then termed “FAS”. Ann was near retirement but was mentoring the PCAP program.

One of the highlights of my Churchill Fellowship trip was visiting the Lakeland Centre for FASD in Cold Lake, Alberta, for several days with Audrey McFarlane, who is now the executive director of the Canadian research network CanFASD. Cold Lake was a town with a population similar in size to Alice Springs. The centre had a multidisciplinary diagnostic team and served a number of regional and remote First Nations communities by providing visiting FASD diagnostic services, family support post-diagnosis, and other activities such as summer camps. While I was there, Audrey was working on a proposal to build housing for young people with FASD to support them into adulthood. I found this visit inspiring and was impressed by the scope of services offered by the centre.

In Juneau, Alaska, I was hosted by Ric Iannolino, the FASD Clinic Coordinator with the Central Council of the Tlingit and Haida Indian Tribes of Alaska (CCTHITA). Ric had provided training to thousands of Alaskan social workers and was a resource for the whole community. Ric took me to visit the range FASD services available in the region, including FASD services embedded in First Nations Health services and early childhood services.

Ric also introduced me to Morgan Fawcett, a young First Nations man who was a talented flute player and FASD advocate. Ric also explained the 3M model – mentoring, role modelling, and monitoring – a program designed to support First Nation Alaskan young people back home after they had been placed in residential care interstate.

With Morgan Fawcett, Ric Iannolino and Ruby at a Central Council of the Tlingit and Haida Indian Tribes of Alaska ceremony.
Visiting Hoonah, a Tlingit community on Chichagof Island with Ric Iannolino

My focus was on finding innovative models of supporting children with FASD in child protection services. One of the services that stood out was Surrounded by Cedar in Vancouver, which supported First Nations children in out-of-home care and had taken over the guardianship role from the state government. The staff were very proud to have taken on this responsibility, and it was an incredible service. Alberta Children’s Services had initiated a FASD strategy for the province with engagement of 13 government departments and agencies. I also had the privilege of attending two days of training with Donna Debolt, who had trained an estimated 10,000 workers across Canada in FASD-related skills. Her teachings still influence my work today. She introduced me to the work of Dorothy Badry, a social worker and professor, and the Community of Practice, which demonstrated the capacity to improve placement stability for children with FASD.

After my visit to the Fetal Alcohol Spectrum Disorder (FASD) clinic in Seattle, I returned home with a greater realization of the significant need for prevention, diagnosis, and support services for individuals affected by FASD in our community. Witnessing the benefits of multidisciplinary diagnosis, initiatives such as the Parents’ Child Assistance Program (PCAP), and the FASD Key Workers, I came to understand the crucial role of FASD training for all professionals involved in the sector. In addition, I observed that embedding FASD services within Aboriginal-controlled healthcare facilities led to reduced shame and stigma around the condition. Despite my eagerness to share my findings and experiences, my position as a public servant limited my ability to speak publicly about the limitations of government services. Instead, I focussed on sharing what I had learnt with my managers and with community based organisations.

I delivered a paper to the Australia Pacific Conference on Child Abuse and Neglect (APCCAN) in Perth in 2009, and gave a presentation to the Department of Health executive in Darwin, including the CEO and health advisors. Unfortunately, my efforts were met with a resounding lack of interest. I was told that we were only seeing about 5 children born with FASD a year in the Top End, based on Harris and Bucens’ study in 2003, and that the focus should be on prevention rather than treatment. Overall, the response was disappointing and left me feeling frustrated with the lack of urgency and action on FASD by government.

I realise now that I was filled with an idealistic energy and a strong desire to take action – the eye-opening experience had left a significant impact on me, and I became acutely aware of the severe consequences of ignoring FASD. The thought of such injustices kept me up at night, and I couldn’t ignore the urgent need for action. In Canada I had heard some incredibly sad stories of young people and adults with FASD who had experienced tragic events or committed terrible crimes, or had caused harm to others in situations that could have potentially been avoided, had their disability been recognised and had they received the support and supervision they needed.

In 2009, I joined forces with other concerned professionals in Alice Springs who shared my passion for addressing FASD. Together, we formed a steering group that included representatives from various organizations such as Alcohol and Other Drug Services Central Australia (ADSCA), NT Families and Children, Alice Springs Hospital, Central Area Coordination, Congress, Holyoake and the GP Network. ADSCA provided us with some project funding, which allowed us to raise awareness about FASD. Our first event was a stall at Alice Plaza for International FASD Awareness day on September 9, 2009.

We also invited Professor Elizabeth Elliott, an Australian FASD expert, and Vicki Russell from NOFASD to Alice Springs to provide professional development and training. We planned a series of events for February 2010, including five events over three days, for carers, professionals, and Alice Springs Hospital staff. The events culminated in a full-day community forum where Josie Ward and Penny Bridge from the Ord Valley Aboriginal Health Service shared their FASD project. Maureen Carter and June Oscar from Marninwarntikura Women’s Health Service in Fitzroy Valley showed a new documentary film, Yajilarra, about their campaign to reduce the harmful impacts of alcohol in their community.

The working groups generated recommendations, and we submitted a project report to the Department of Health. The report emphasized the need for more information and training for health professionals, as a first step in developing a local action plan.

“The issue of FAS is not new in Central Australia, and had been previously raised … Yet despite a level of awareness among health providers, there appeared to be a lack of resources readily available to inform those in contact with the at-risk population, and no regular training. It was felt that the potential impact of FAS and FASD in the long term may be underestimated and that increased education, awareness and targeted service delivery could both reduce the impact of FASD and improve the lives of affected individuals.“

Alice Springs FASD project report, February 2010

An opportunity arose and I transferred to a new role as manager of the child protection office in Nhulunbuy. It was a significant change for me, as I had to learn about Yolgnu culture and adapt to a new environment. However, I was fortunate to have the support of a team of Aboriginal community workers, who helped me navigate the challenges and understand the local context.

The community had its own system of alcohol restrictions that applied to everyone, and had been in place prior to the Intervention. To purchase alcohol, permits were required for all residents and take-away liquor was limited, resulting in a reduced volume of alcohol in the community. However, despite these restrictions, FASD remained an issue due to the availability of alcohol from outlets in town.

When I returned to the 4th International FASD conference in Vancouver in March 2011, I had the opportunity to meet more Australians who were working in the field of FASD including Kerryn Bagley, a social worker from New Zealand who was doing her PhD on FASD and social work. We shared a common practice approach and were eager to disseminate this information. Kerryn attended training with Diane Malbin in Portland, Oregon, on the Families Moving Forward model, and became the only accredited facilitator in Australia at that time.

While in Nhulunbuy, I discussed the need for FASD training for child protection workers with my manager who agreed that I could run some FASD training workshops at different sites. I also proposed a research project to review the files of children who had open child protection files and those in care to determine how many children had experienced prenatal alcohol exposure. The project was approved, and I continued it even after I moved back to Melbourne at the end of 2011.

In 2011 the Australian Government House of Representatives launched an inquiry into FASD. I made a submission based on my findings from my Churchill Fellowship. Although I was no longer employed by the NT government, I still felt strongly about the issue and wanted to contribute to the inquiry. There were several submissions from NGOs, peak organizations, and individuals in the NT, but surprisingly, there was nothing from the NT government. The report, titled “FASD: The Hidden Harm,” was released in November 2012, and its first recommendation was the development of a national FASD action plan based on the report’s findings.

After returning to Melbourne, I found work in child protection since there were no FASD jobs available. Even though it was a full-time job, I would occasionally take leave and travel back to the NT to conduct FASD workshops in Alice Springs, Darwin, and sometimes Nhulunbuy and Katherine.

I decided to start a FASD consultancy in 2014 after resigning from my job in child protection. Even though FASD was a significant issue in Victoria, it was much less recognized than in the NT. To generate interest, I sent information sheets about FASD to every child protection office, school, foster care agency, and peak body in Melbourne. I even met with training coordinators in child protection and youth justice to discuss training. Although people seemed interested in FASD, they didn’t follow through with attending workshops despite my efforts to advertise and promote them at conferences and events. To continue spreading awareness about FASD, I scheduled workshops in Alice Springs, Darwin, and occasionally Nhulunbuy and Katherine, traveling up three or four times a year. I was sometimes self-conscious about why I was doing this work and if people knew anything about me. I made sure to respect the local agencies and not duplicate what was already in place, but also knew that there was a demand for more FASD training from policy makers, teachers, disability workers, lawyers, therapists, and child protection workers who didn’t receive adequate FASD education in their basic training.

I had a regular training arrangement with Berry Street in Melbourne, where I presented a full-day workshop that I had been running for about four years. The workshop covered the basics of FASD diagnosis, the lifespan approach, and case studies for case management. I drew on what I had learned overseas, particularly in relation to children in care and in the justice system.

In one workshop, I was really challenged by one of the participants, Tony. He was getting agitated with some of the things I was saying. Looking back, I was probably being too black and white about things, and now I would qualify my statements a bit more. But I was explaining that we can’t expect young people with FASD to learn things the same way other kids learn things. Tony was saying, “You can’t say that. You can’t say they can’t learn.” So we talked through the issue, and I tried to explain it differently, but I could see he wasn’t happy. At the end of the day, when we went around the room and everyone was saying something they would take away from the workshop, we got to Tony, and he said, “Well, I’m really angry,” and I just went cold inside. And then he said, “I’m angry this is the first time I’m hearing about this.” He couldn’t believe that with so many children affected, we weren’t doing more about it.

Tony was concerned because one of the things we talked about in the workshop was that the young people they worked with needed to be independent at 18, and my view was that young people with FASD can’t be. The participants said, “Well, there’s no other option,” and I said, “That’s the point. That’s what we need to advocate for, and what we need is for workers like yourselves to understand FASD, so you can talk to your managers and gather the evidence to take to government, to demonstrate that young people with FASD cannot be independent at 18, and that our system needs to change. Our options need to change.” That’s a hard message to deliver, because I’m sending people away from training feeling like they don’t know what to do. They know that the young person they are supporting can’t manage in private rental, but they don’t have any other option for them. Back then, the aftercare options were limited, and a young person might get a bit of support to get set up in housing and a worker they can contact but not much more. That’s why the Home Stretch project extending care was so important for all young people, but especially young people with FASD.

Drumming up interest in FASD in May 2014

After the workshop, Tony reached out to me and expressed his desire to do more to address FASD. His agency worked in partnership with Rumbalara Aboriginal Coop in Shepparton and he asked me to help design and facilitate a full-day workshop at Rumbalara in November 2014. Tony organized the logistics of the workshop, while I co-facilitated with a colleague, Jody Barney. Jody is a Deaf Aboriginal/South Sea Islander woman who is a leader in the disability field, and we had previously met and run workshops together for VACCA.

The workshop was a huge success, with approximately 200 attendees, including Andrew Jakomos, the Aboriginal Children’s Commissioner, and Sharman Stone, a local MP who had chaired the FASD Senate Inquiry in 2012. The workshop was well received by the Aboriginal community members and it was clear this was an issue that was impacting the community. Later the Goulburn Health FASD clinic was later established in Shepparton through Patches Paediatrics.

Rumbalara Aboriginal Co-operative FASD forum, November 2014

Unfortunately, a few weeks before the Rumbalara workshop, I had a personal setback, being diagnosed with breast cancer. I had undergone surgery a few weeks earlier and began treatment right after the workshop. Although I recovered, it was not an ideal time to be self-employed. My old colleague and manager at child protection, Deb Nillsen, had also been through cancer and helped me find a flexible part-time role back in the department. I was extremely fortunate and still very grateful today for her help, even though it meant no longer focusing on FASD, and I was terribly sad when Deb passed away a few years later due to a recurrence of her own cancer. Vale Deb.

Meanwhile, interest in FASD was growing and the opportunities for advocacy were increasing. In August 2013, the Labor government under Kevin Rudd announced plans for a national FASD action plan committing $20M to FASD. Everyone was thrilled, but only for about 6 weeks. Abbott won the September election and when his government announced its version of the FASD action plan in June 2014, the budget was $9.2M. While some great initiatives were funded through the plan, including the FASD research network and diagnostic services, it was disappointing that there was no funding for training professionals or support services for people with FASD.

The first Australasian FASD Conference was held in Brisbane in November 2013 and I had a paper accepted based on my NT research. The findings were striking. Of the 230 children sampled, 86% of children in care in the NT had been exposed to harmful alcohol use by one or both parents, and 1:5 children with open cases had been exposed to alcohol before birth. This number rose to 2:5 for children in care. At the conference, delegates endorsed a Call to Action urging all health professionals, service providers, governments, and communities to work together to reduce the prevalence of FASD and improve the quality of life of individuals and families living with FASD.

At the First Australian FASD conference in Brisbane, 2014

In March 2014 the Legislative Assembly of the Northern Territory established a Select Committee on Action to Prevent Fetal Alcohol Spectrum Disorder. Since I was still in touch with my DCF manager, I prepared a submission to the Committee based on this research on behalf of DCF. The Northern Territory Council of Social Service (NTCOSS) also engaged me to work on their submission, and I made a personal submission to the inquiry, which allowed me to incorporate ideas from my Churchill Fellowship report. Ultimately, the three submissions were referenced extensively in the report, The Hidden Disability, published in February 2015.

In the lead up to the Action Plan, the Australian government ran a consultation in Melbourne which was the first time some of the people working in FASD in Victoria had come together. This included Kerryn Bagley who was now living in Victoria, Jane Halliday and Evi Muggli who were working on the Asking Questions about Alcohol in Pregnancy (AQUA) study at MCRI, Cheryl Dedman, NOFASD Board member and carer, Dr Katrina Harris (who had written the first study on FAS in NT in 2003) who headed of Developmental Paediatrics at Monash Health, and Kellie Hammerstein from Aboriginal Health at Monash. A loose network was formed, and later formalised in 2017 as the Victorian FASD Special Interest Group (or SIG) with the goals to raise awareness of FASD and in Victoria, to collaborate and share information, and to support development of FASD research and program development.

Members of the Victorian FASD SIG attended a FASD Roundtable at Shepparton in October 2019.

In late 2015 I resumed FASD training for child protection workers and youth justice workers in the Northern Territory as part of the professional development calendar for DCF. I would come up for a week, run a child protection workshop, offer a general workshop for the public, and provide a free in-service to a local organisation such as the Northern Australian Aboriginal Justice Agency (NAAJA).

I was now working in the community sector, managing out of home care programs including permanent care and adoption for Uniting Vic Tas. Overseeing the permanent care program brought me into contact with many children affected by FASD, mostly undiagnosed, and placement stability was a real concern. This experience reinforced the importance of professional training, so I delivered workshops for my colleagues including other permanent care teams. We also integrated FASD screening in our processes. I spent 4 years in this role and met some amazing colleagues. However it was almost impossible to access diagnosis, other than through private providers such as Dr Harris.

Things really took off in 2016, with the publication of the Australian Guide to the Diagnosis of FASD, the establishment of the FASD hub, the funding of diagnostic clinics, research, and funding for organisations such as NOFASD to deliver services and develop resources under the National FASD Action Plan. The VicFAS SIG arranged several events to raise awareness of Fetal Alcohol Spectrum Disorder (FASD) on International FASD Awareness Day. In 2018, the team organized a full-day workshop at the Royal Children’s Hospital, which was attended by 280 people. In 2020, Kerryn Bagley, who now works at the Living with Disability Research Centre at La Trobe Uni, obtained funding for a webinar targeting professionals. We co-facilitated this webinar, which was attended by more than 600 people from Australia and New Zealand.

International FASD Awareness Day, Royal Children’s Hospital, September 2018

In 2019, Dr. Katrina Harris approached me with an exciting opportunity to help set up the first statewide FASD diagnostic service in Victoria at Monash Children’s Hospital. I was thrilled to join the team and be a part of this important initiative, which was my first actual job in a FASD role. At our launch event, we had the pleasure of hosting Dr. Dorothy Badry from the University of Calgary, and I also organized a forum with Dr. Badry and senior practice leaders from DFFH Child Protection.

Dr Katrina Harris, Dr  Kerryn Bagley, me, Professor Dorothy Bagley and Dr Ali Crichton at the VicFAS launch.

Currently, I work part-time in the diagnostic service and have contributed to the assessment of over 100 children, with more than half of them being in out of home care. As part of my role, I recorded a video discussing the role of social workers in FASD diagnosis, which is available on the FASD Hub. Additionally, I provide regular education sessions to community agencies, including child protection services in Victoria. I find this work incredibly fulfilling and am grateful to be part of a team making a positive impact in the lives of children and families affected by FASD.

In 2022, I began a project with the Australian Childhood Foundation to integrate Fetal Alcohol Spectrum Disorder (FASD) into the organization’s well-established trauma-informed practice. As part of this project, we established a FASD clinic in Darwin, organized webinars and events, and facilitated sessions on FASD and trauma at the International Childhood Trauma Conference in 2022. I am involved in the FASD Guidelines Development Group, working alongside Natasha Reid and her team at UQ to provide a social work perspective to the review of the Diagnostic Guidelines.

Dr Natasha Reid, Nicole Hewlett, Dr Liz Elliott and me at the APSAD Conference Darwin October 2022
With Dr Vanessa Spiller at the International Childhood Trauma Conference, Melbourne 2022

Now, for the first time since COVID, I have been able to resume training practitioners in the NT. I feel fortunate to work alongside other educators who are passionate about FASD, such as Sophie Harrington from NOFASD, Psychologist Dr Vanessa Spiller who offers excellent online training and resources. I’m indebted to friends like Jess Birch, a FASD advocate and lived experienced educator. I also want to acknowledge the ground-breaking work of colleagues like the deadly Nicole Hewlett, who led the development of the Australian FASD Indigenous Framework. I highly recommend reading this publication, which is the first of its kind in the world. We are incredibly fortunate to have a dedicated community of individuals committed to mitigating the effects of FASD.

“It is critical to redress the harms from colonization, which have laid the foundations for FASD in Aboriginal communities. While by no means a panacea to addressing FASD in every Aboriginal community, the Australian FASD Indigenous Framework presents stepping stones to guide Aboriginal and non-Aboriginal peoples’ journey together to heal these harms. Such solidarity requires changes in non-Aboriginal and Aboriginal ways of knowing, being and doing, to enable space for two-way learning, respect and trust to occur. By deeply listening to and drawing from both Aboriginal and Western wisdom, this article presents a way forward to create new knowledge and practice that offer immense benefits to the quality of assessment and support for all Australians living with FASD.“

Hewlett, N., Hayes, L., Williams, R., Hamilton, S. et al (2023).

As a Churchill Fellow, my aim is to bring valuable overseas insights to make a difference in local contexts. I enjoy discovering innovative approaches that practitioners can test in their work. However, our knowledge of what works for FASD individuals, especially young people and adults, is lacking in some areas. Research-based evidence is crucial but may not always apply or be effective in Aboriginal communities due to cultural factors and historical trauma.

Therefore, instead of solely relying on evidence-based practices, I think it’s important to implement evidence-informed practices that take into account local knowledge, the expertise of practitioners, and the preferences of the individual and their family. By incorporating these factors, we can develop culturally appropriate strategies that are more likely to be effective in improving outcomes. I summed this up in a quote I gave to FARE for their FASD Awareness Month campaign in 2021:

“There’s nothing I enjoy more than sharing knowledge and learning from others about what is working well. My approach is that any professional who learns more about FASD can come up with better strategies in their own area of practice. I can provide the information, research, evidence and some suggestions – but firmly believe the best suggestions come from the ground up.”

References:

Hewlett, N., Hayes, L., Williams, R., Hamilton, S. et al (2023). Development of an Australian FASD Indigenous Framework: Aboriginal Healing-Informed and Strengths-Based Ways of Knowing, Being and Doing. International Journal of Environmental Research and Public Health, 20(6), 1–25. https://doi.org/10.3390/ijerph20065215

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Being a FASD detective – connecting brain and behaviour

Prue Walker · July 25, 2021 · Updated August 10, 2021

It’s the same every night…when Sophie (10) gets in the shower, I tell her to use shampoo. I ask her if she’s washing her hair and she says yes … then she comes out of the bathroom and her hair is dry. When I confront her, she gets upset and says she’s not lying…. Is this FASD?

If you sometimes feel that you have no idea why your child is behaving a certain way – you are not alone. This week I had talked to Carmel, a kinship carer who was struggling to make sense of Sophie’s behaviour. Carmel felt tired, frustrated and a bit cross – was Sophie trying to push her buttons? Why else would she do this, night after night?

Children with FASD can’t tell us why they behave the way they do – they are not aware that their brain works differently so they can’t explain their impulsivity or their difficulties understanding instructions.  Children with FASD need adults to do the detective work around behaviour and figure out the ‘why’.

Being a FASD Detective*

Making the connections between your child’s brain and behaviour takes curiosity, patience and a calm approach. It’s not always something that we can do in the heat of the moment. To understand your child’s unique brain, it can help to look back on their test results or talk to their therapist/s.

Behaviour is communication of something the child/person can not verbalize…and usually the message is some variant of “I am overwhelmed, please help me” Be a BRAIN DETECTIVE! Understand FASD and your child’s brain differences. Step back, OBSERVE, and ask yourself what your kiddo needs!

> Always Remember the Brain:30 Strategies for parents of a child with FASD, Indiana NOFAS

If Carmel interprets Sophie’s behaviour without understanding her brain, she might jump to the conclusion that Sophie is:

  • lazy – she can’t be bothered washing her hair so she’s lying about it
  • unmotivated – she doesn’t care about hygiene
  • avoidant – she won’t do anything if she can get away with it
  • attention seeking – she wants me to do it for her
  • deceptive – she just can’t tell the truth
  • selfish – she only does things she wants to, not what I need her to do.

All these assumptions are based on the idea that Sophie is in control – that’s she making a choice. But what if it’s can’t, not won’t? If we recognise the behaviours as symptoms of a brain-based condition, we can see other possibilities. Sophie might be:

  • distracted – she really means to wash her hair but once she’s in the shower, she started thinking about something else
  • forgetful – she meant to do it, but when Carmel called her to get out of the shower, it was too late
  • struggling to process information – she couldn’t really hear Carmel with the water running, so she just yelled out “yes”
  • overwhelmed – she really doesn’t like the feeling or smell of shampoo
  • confabulating – she can’t remember whether she washed her hair or not, but once Carmel asked, she said yes, and now that feels like a real memory.
  • sensitive – she knows she’s done something wrong but isn’t sure what, and now she’s in trouble, so she feels defensive.

I asked Carmel if she could think of a time when Sophie behaved differently – were there days when she can remember all the steps, and follow them?

Carmel said no, that this happens all the time.

I asked whether Sophie would behave differently if Carmel told her they would be doing a fun activity after her shower. Would this motivate her?

Carmel felt that it would make no difference, and that Sophie would be more likely to rush her shower and miss other steps too, like forgetting to use soap.

Just by taking time to reflect, Carmel was able to notice that Sophie had never independently remembered all the steps involved in showering, even when there was an incentive. Even though she felt Sophie should know better, she realised that the behaviour wasn’t within Sophie’s control.

We reviewed what Carmel already knew about Sophie’s brain and how it might be affecting her behaviour. Carmel knew from past assessments that Sophie has difficulties with:

  • attention – she loses focus easily and gets distracted
  • memory – she doesn’t always retain information
  • verbal processing – she can’t always understand verbal instructions
  • sensory processing – she doesn’t like strong scents
  • planning and organisation – remembering steps in order.

Carmel realised that Sophie needed more help to keep focused on the steps involved in the task, and needed reminders. She was aware that Sophie processes visual information better than verbal information so it made sense to use a visual chart. Carmel also agreed that Sophie needed Carmel to check she had done all the steps before getting out of the shower.

Carmel said that Sophie didn’t need reminders to turn the tap on or off, or to dry herself, so we came up with a picture chart with just the steps she needed help with. Because Sophie can be a concrete thinker, Carmel agreed it would be better to use take photos – that way Sophie wouldn’t confuse the shampoo and the lotion. 

By making the connection between brain function and behaviour, Carmel felt more accepting of Sophie’s behaviour and was able to come up with a new strategy. She could also see that Sophie would need help to use the chart which we broke down into:

  1. teach
  2. remind
  3. supervise.

Carmel put the chart up in the shower and we worked out the next steps:

  1. Carmel would show Sophie the chart and explain it.
  2. When it was time for Sophie’s shower, Carmel would indicate the chart and remind her of the steps.

When it was time for Sophie to get out of the shower, Carmel would check if she had done the steps – if not, she would wait while Sophie did them.

The final step for Carmel will be to watch and see if it works. If the visual schedule doesn’t work, Carmel might need to use her detective skills to work out why. Sophie might need more teaching, more reminding or more supervision.

*The idea of a FASD detective isn’t original – if you search online you will find other examples of this concept as a helpful approach for parents and carers.

Prue Walker is a social worker and FASD consultant who has been working with and advocating for those with FASD since 2008. She provides FASD education, coaching and consulting services to families and organisations. Contact Prue to discuss your needs.


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Parenting and FASD: 3 steps that can make a difference

Prue Walker · July 14, 2021 · Updated August 21, 2021

If your child has received a diagnosis of FASD, you are probably thinking – what next? What do I do? What is going to make a difference?

When a child has difficulties understanding instructions, following routines, and managing their feelings, you are probably seeing meltdowns, aggression or oppositional behaviour – which can make family life hard. Therapies can be helpful, but what can you do as a parent?

Here are 3 steps you can take to help you parent your child, and hopefully make life a bit easier and more fun.   

> 1. Learn about the brain and behaviour

> 2. Follow some simple guidelines

> 3. Assemble your parenting toolkit

1. Learn about the brain and behaviour

When a child has a physical disability, we make accommodations. We don’t expect a student who uses a wheelchair to be able to get up steps to their school – they need a ramp. No-one expects the child to change.

When a child has FASD, the first thing we usually notice are behaviours. Common indicators of FASD include:

  • Repeats mistakes
  • Difficulty controlling emotions
  • Easily distracted
  • Can’t see another person’s point of view
  • Doesn’t follow instructions
  • Can’t sit still
  • Has trouble playing with others
  • Behaves younger than their actual age.

Most people would look at this checklist and think – well, the child needs to learn these skills. How can they function at school, at home or in life if they can’t follow instructions? And you’re right, this is what makes life so hard for children with FASD. When we expect children to learn these skills – and despite our best efforts, they don’t – parents can be left with a sense of frustration, and the child, a sense of failure.  

When we focus on changing behaviour, we are making assumptions about what the child can or can’t control. But FASD is a disability, and its effects are lifelong. So why are we expecting the child to change?

Is it that they won’t or that they can’t?

If these words are familiar, then you have probably come across the work of Diane Malbin, even if you didn’t know it at the time. Her book Trying Differently Rather Than Harder explains FASD as a “brain-based physical condition with behavioural symptoms”. Understanding the connection between brain and behaviour is the key to supporting children with FASD.

Diane Malbin uses the example of a boy who leaves his bike outside in the rain, instead of putting it away. As a consequence, he’s sent to his room for time out with the expectation that he will learn from the experience and not repeat his mistake. This strategy assumes that he can remember what happened, understand why he is getting a consequence, and next time he’s riding his bike he will act differently. But the boy’s brain can’t do all these tasks, so he is likely to repeat the mistake. The parent gets frustrated.

If the boy’s parent can understand that he can’t remember to put his bike away, they can come at the problem from another angle.  They might focus on finding ways to remind him without punishing him for a mistake he couldn’t help.

Diane Malbin calls this the neuro-behavioural or “NB” approach.

This book is recommended reading for any parent who is starting to learn about FASD, and you will find the NB approach mentioned in many other FASD resources.

2. Follow some simple guidelines

The second step is to learn some simple principles that help children and young people with FASD manage daily life. Eight Magic Keys by Deb Evenson and Jan Lutke were developed to help students, but have been used by parents and carers to understand why their child might be challenged, and how these challenges can be reduced or prevented.   

Credit: Pop FASD

1. Concrete – use concrete words, avoiding abstract ideas or figures of speech.

  • Instead of “get dressed” say “put your pants on”.

2. Consistency – keep things the same as much as possible in different environments, and reduce changes.

  • Use the same words for things at home and school.

3. Repetition – you will need to repeat ideas and information many times before they enter long term memory.

  • Repeat instructions using the same words each time, every day. 

4. Routine – keeping things the same helps children know what to expect and reduces anxiety.

  • Keep meal times the same every day, even on holidays and weekends.

5. Simplicity – reduce stimulation and overload from too much information.

  • Use short sentences, give one instruction at a time, and wait for the child to process.

6. Specific – say exactly what you mean and describe each steps involved.

  • Instead of “tidy your room” say “put all the toys in this box”.

7. Structure – this helps the world make sense for children with FASD.

  • Have a place at home for shoes, for schoolbags, for readers. Use picture labels, and put things in the same place every day. 

8. Supervision – children need supervision as for a younger child, to help them learn appropriate behaviour.

  • Be close by when your child is playing with a friend so you can teach and model social skills. 

The Eight Magic Keys also help us understand why unwanted behaviour might be happening – was there a change in routine? Was the task too hard? Were there too many instructions? Did the child need more supervision? This kind of tool helps you take a step back from blame or shame to apply a ‘scientific’ lens and consider your options for what you do next.

If you search online for “Eight Magic Keys” you’ll see these ideas presented in a range of videos articles and graphics.

3. Assemble your parenting toolbox

The third step involves looking for practical FASD strategies and tools that you can try at home, to see if they make a difference to your child. One size won’t fit all, so it’s worth putting together a tool box to draw from.  

NOFASD Australia has collected helpful strategies that have been tried and tested by parents and therapists in Fetal Alcohol Spectrum Disorder: An Australian toolkit for parents, caregivers and families. These include:

  • ideas to manage shopping, restaurants, and outings
  • suggestions for daily routines – bathing, mealtimes
  • calming strategies
  • ways to help your child express emotions.

Here’s an example of a visual schedule to support a child.

Credit: NOFASD Australia, 2021.

Visual schedules are great for children who have trouble remembering routines, have anxiety about what comes next, or have trouble with verbal language and processing. Many children with FASD process information better when it’s visual – if you have a therapist involved, they can help with these strategies.  

If you feel overwhelmed, choose one or two things to try, and don’t feel you have to make too many changes to your daily routine at one time. What is causing the most stress at the moment? You might want to start with the morning routine, or the weekly shopping trip. Your child will have individual strengths and challenges, so not all strategies will be a perfect fit. You could print off a few pages of the Toolkit that cover the morning routine and circle the things that are worth a try, and cross out the ones that won’t.

It’s important that the strategies you use are a good fit for your child, and are presented in a way you relate to, and that are going to fit into daily life. Some parents enjoy reading about ideas in depth, others like checklists and tip sheets, while you may learn best from real life examples. If you can’t find exactly what you need, try typing a question into google, for example:

  • how can I help my 10 year old with FASD make friends
  • strategies to help teenagers with FASD manage money

Or just use some keywords – eg FASD tips parents ownership/lying/anger etc.

In my blog FASD essentials I talked about key Australian FASD sites, including NOFASD and the FASD Hub. Take some time to explore these websites – you’ll find lots of helpful information.

Some of the best insights come from therapists who have also parented children with FASD – they know first-hand what doesn’t work, and also bring a professional lens.

  • Dr Vanessa Spiller is an Australian clinical psychologist and also the parent of a young person with FASD. You can watch her talk about her experience on the FASD Hub. She has developed a suite of FASD educational resources  “Explained by Brain” including workbooks, videos and training for parents, carers and professionals.
  • Eileen Devine is a Canadian clinical social worker and FASD specialist who is the adoptive mother of a child with FASD. She coaches families in the neurobehavioural approach, and blogs about parenting and FASD.

Ideally, your child’s therapists will be able to help you find and use effective parenting strategies. But we know that many typical parenting strategies don’t work for children with FASD – so if your child’s psychologist, speech therapist or OT hasn’t had the opportunity to learn about FASD, you may need to refer them to these FASD resources. Once professionals can understand FASD, they can be more a more effective support – and help you make a difference to your child.

Prue Walker is a social worker and FASD consultant who has been working with and advocating for those with FASD since 2008. She provides FASD education, coaching and consulting services to families and organisations. Contact Prue to discuss your needs.


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Essential FASD resources

Prue Walker · July 7, 2020 · Updated August 16, 2023

If you are looking for good quality information about fetal alcohol spectrum disorder, it can be hard to know where to start. When I first started learning about FASD in 2006, there was very little information available in Australia – nearly all the resources I found were from the US or Canada. Fortunately that’s changed, and we now have some great Australian sites and resources to help parents, families and professionals learn more about FASD and most importantly, what works.

> Australian FASD information

> FASD resources for parents and carers

> FASD resources for educators

Australian FASD information

The FASD Hub is the place to start.

What is it?

An online hub for all things FASD in Australia, including diagnosis, facts about alcohol and pregnancy, and a directory of services around Australia.

Highlights

To hear the voices of children, young people and families affected by fetal alcohol spectrum disorder, navigate to the videos to hear about some of the challenges and successes of these families.

Sleep is a huge problem for kids and young people with FASD and can really affect family life. Have a look at this fact sheet on sleep problems, for advice. 

FASD resources for parents and carers

For parents and carers, you can’t go past NOFASD Australia for reliable information, and most importantly, help.

What is it?

NOFASD supports individuals and families living with FASD and brings their voices to government, researchers and policy makers. Sue Miers founded a volunteer organisation over 20 years ago, when she couldn’t find support for her family. The organisation now provides a carer helpline, training, and lots of resources along with webinars and podcasts.

Start with the Resources to see what’s available. The FASD Toolkit for Australian Parents, Caregivers and Families* for families and caregivers pulls a lot of FASD info into one place, and includes strategies that may help with daily life – shopping, bedtime, routines. You can also complete the free online course, Foundations in FASD.

If you are dealing with the NDIS, have a look at the NDIS fact sheets and download a sample plan for a young person with FASD.

Highlights

Home schooling due to COVID-19 has been a huge stress for families. Kids with FASD have missed out on important schooling, parents haven’t had a break, and there is no sign that lockdowns are a thing of the past. NOFASD has worked with parents to produce a series of webinars to help you support your child in home learning, while not forgetting your own self-care.

Adults with FASD (and anyone who wants to understand them) should read CJ Lutke’s blog. CJ lives with FASD and has used her experience to become a well known speaker and presenter. In her post Going for Coffee she shows how the sensory challenges of FASD make this ‘simple’ task into an obstacle course.   

FASD Resources for Educators

As more children are being diagnosed with FASD in Australia, teachers and preschool educators are keen for information to help in the classroom. The good news is that new resources for Australian schools are currently being developed under the National FASD Action Plan. In the meantime, here are a few Australian resources (and one from Canada).

The South Australian Department of Education has some guidance for supporting students with FASD –  the information on the site is introductory, but it’s a good start.

Schools may be interested in the FASD training modules developed by the Department of Education in WA These explore how learning is affected by FASD and are designed to be delivered within a school team.

This podcast features Australian FASD experts discussing how the classroom can be adjusted for students with FASD. 

Recommended:

If you are looking for more detailed information,  I recommend two Canadian resources –  What Educators Need to know about FASD and What Early Childhood Educators Need to know about FASD. These provide a wealth of evidence-based strategies for the kinder and classroom to help teachers understand the needs of students with FASD and provide accommodations.

I hope these help you start on your journey of learning about FASD. Once you start exploring the resources available, you’ll find many others. I’d love to hear about your favourites. I’ll be featuring other resources in future blogs.

*full disclosure – I revised the Parent/Carer Toolkit for NOFASD in 2021 so I think it contains some good info! Full credit to the many resources used to compile the toolkit – any mistakes or errors are mine alone.

Prue Walker is a social worker and FASD consultant who has been working with and advocating for those with FASD since 2008. She provides FASD education, coaching and consulting services to families and organisations. Contact Prue to discuss your needs.


8 magic keys behaviour brain and behaviour FASD FASD education FASD Training fetal alcohol spectrum disorder Neurobehavioural approach parenting strategies toolkit

Contact

+61 419 878 260
Email Prue

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We acknowledge the Traditional Owners of the country on which we work, the Wurundjeri people of the Kulin Nations, and we pay respect to their Elders past, present and emerging. We recognise that sovereignty was never ceded.

Copyright © 2021 Prue Walker · Log out

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