Being aware and informed about FASD
Alcohol can cause damage to the developing baby at any time during pregnancy, often before a pregnancy has been confirmed. The level of harm is dependent on a wide range of factors, making it impossible to predict the outcome of alcohol exposure to any individual pregnancy. Factors include the amount and frequency of the mother’s alcohol use, age, health (nutrition, tobacco and other substance use, mental health) and environmental factors such as stress.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe the impacts on the brain and body of people prenatally exposed to alcohol. FASD is a lifelong disability.
Individuals with FASD will experience some degree of challenges in their daily living and may need support to develop motor skills and strengthen their learning, memory, attention and communication skills.
Their physical health requires assessment and monitoring, and they may struggle with emotional regulation and appropriate social skills. However, early intervention and understanding will assist people living with FASD to reach their full potential.
Each person with FASD is unique and has areas of both strengths and challenges.
The importance of the role of Out-of-home care sector workers
People involved in Out-of-Home Care (OOHC) play a central role in recognising and supporting the needs of children and young people with FASD. The new resources for Out-of-Home Care (OOHC) sector workers, highlight the prevalence of FASD in OOHC and the importance of considering that behaviours and challenges experienced by children and young people, could also be due to prenatal alcohol exposure.
In this joinly presented webinar by NOFASD and the Centre for Excellence in Therapeutic Care, the presenters discuss the impacts of FASD and trauma, specifically in relation to the Out-of-Home Care sector.
We know that FASD is sometimes misdiagnosed as ADHD, autism, or other disorders and that young people who are misdiagnosed are at risk of not receiving the right support, being misunderstood, or even being blamed for behaviours caused by their disability. The earlier that appropriate supports can be provided to a child with FASD, the better the long-term outcomes. Listen to this insightful podcast to include perspectives from: Dr Vanessa Spiller, Ms Prue Walker, Dr Robyn Williams, Mr Neil Reynolds and Ms Sophie Harrington.
FASD in the Out of Home Care sector
The hidden disability
Children and young people with FASD are 17-19 times more likely to be placed in foster care. When FASD goes unrecognised, children and young people can be left without the right support, misunderstood, or even blamed for the behaviours caused by their disability. Without assessment and diagnosis children with FASD in OOHC are highly vulnerable to placement disruptions, inadequate supports/interventions, and development of secondary effects (Pelech et al., 2013). You can read more about the implications for children in out-of-home care and the importance of accurate identification and diagnosis in this literature review.
The hidden disability you may see every day
In this webinar, caregivers of children with FASD talk about how the resources for families and people working within the (OOHC) sector will make a difference to help raise awareness and understanding of FASD and assist to get the best outcomes for children at risk of FASD. Watch the webinar here
The effects of FASD
The Characteristic features (physical, developmental and/or neurobehavioural of FASD are seldom apparent at birth unless accompanied by specific facial and growth factors that occur infrequently. FASD is often not noticed until the child reaches school age when behavioural and learning difficulties become more evident.
The effects of FASD vary considerably and it is sometimes referred to as an invisible disability. This is because it can be overlooked, attributed to other more well-known non-genetic disorders, or simply blamed on ‘poor’ parenting or post birth environments.
As a result of these issues, it is common for children and adolescents to be diagnosed with other non-genetic disorders before they are diagnosed with FASD.
Many individuals will be diagnosed with ADHD, Autism Spectrum Disorder, Oppositional Defiance Disorder and/or Reactive Attachment Disorder. In some cases, these descriptions are mis-diagnosed symptoms of FASD.
Many children and adults who have FASD live with significant cognitive, behavioural, health and learning difficulties, including problems with memory, attention, cause and effect reasoning, impulsivity, receptive language and adaptive functioning difficulties.
These difficulties are lifelong and may have a significant impact on how a child responds to situations, resulting in challenging behavioural symptoms. Positive outcomes can be achieved when caregivers are appropriately supported to understand and recognise their child’s behaviour as a symptom of brain damage.
Early detection and intervention
People involved in the Out-of-Home Care Sector play a key role in early detection and intervention. Early intervention, combined with appropriate supports and strategies, has been identified as a factor leading to better life outcomes and the reduction of difficulties with daily living skills and secondary conditions. Children and young people entering out-of-home care should routinely be screened for FASD if substance use and misuse was a consideration in their removal.
Assessment and diagnosis of FASD is important as it will provide direction and help guide case managers, support workers and caregivers to appropriate services to provide specialised case management.
The process of seeking and obtaining diagnosis may take time. Therefore, being aware of the possibility of the presence of FASD and implementing appropriate strategies using a ‘FASD-informed’ approach can help with case management approaches and support placement success.
Being FASD-informed and having the right knowledge and understanding of FASD can enable parents and carers to work more effectively with case managers to support the children in their care. Without a formal diagnosis it can be difficult to provide suitable supports and interventions for those affected by FASD, however, early interventions can also help mitigate the risks of adverse life outcomes.
In Australia, being FASD-informed means that the following activities should be undertaken:
- Read and review credible websites such as NOFASD Australia, the FASD Hub and Every Moment Matters
- Undertake accredited online learning such as the Australian Foundations in FASD, Australian diagnostic guide
- Read peer-reviewed literature
- Formal study through the Graduate Certificate and micro-credentials
It is important for out-of-home care workers to be aware of the many additional challenges that caregivers may face when caring for a child or adolescent with FASD.
Having a shared understanding of the complexities of FASD and an awareness that the child or adolescent’s behaviours are a symptom of brain damage, can greatly improve the outcomes for both the young person and the caregiver.
Download the Behavioural Support Strategies resource to learn more.
Sensory Processing Disorders
While sensory disorders are not currently assessed during a FASD diagnosis, research suggests 80% of affected individuals will have sensory disorders. Having a better understanding of the triggers and impacts of sensory disorders for children and adolescents can significantly reduce issues with emotional regulation and escalating behavioural symptoms.
Download the Sensory Processing Strategies resource to learn more.
In this webinar, Managing the Toll of Caregiver Trauma and Building Resiliency, Eileen Devine, a therapist based in Oregon USA, speaks honestly about the experiences which parents and carers face when raising a neurodiverse child.
She looks at some of the processes behind burnout and trauma, then provides strategies and ideas to make positive changes to increase carer health and wellbeing.
Adverse Childhood Experiences and FASD
Researchers from CanFASD, the leading research group in Canada, have found that rates of Adverse Childhood Experiences, (ACEs), are exceptionally high in children and adolescents with FASD.
The interrelatedness of trauma and FASD, the impact on the developing brain, and strategies to support individuals, are explored extensively in the book published by the Marninwarntikura Women’s Resource Centre as part of the Marulu FASD Strategy.
Download the resource Fetal Alcohol Spectrum Disorder (FASD) and complex trauma: A resource for educators
Training for Out-of-Home Care Sector workers
Research has highlighted a significant need to improve support for FASD in out-of-home care. Few professionals working in out-of-home care understand and recognise FASD, or know how to effectively work with people with FASD.
However, these skills are critical to the prevention of adverse life outcomes, often known as secondary conditions of FASD. Secondary conditions are the effects that can occur due to a lack of support and understanding; this may include disruptive school experiences, substance misuse, contact with the criminal justice system, difficulties with independent living, employment and mental ill health concerns.
Micro webinar series for OOHC sector workers
NOFASD Australia have created 3 micro webinars to help OOHC sector workers to become more FASD informed. These short sessions will provide background information on the prevalence of FASD in Australia, looking at the benefits of a FASD diagnosis and the impacts that may be experienced by people with FASD, as well as strategies and resources for supporting people who may be at risk of FASD.
We’d love to hear from you
We are conducting a survey to evaluate these resources and we’d love to hear your views. Let us know what you think and you’ll go in the draw to win one of four $75 e-gift cards.
This study titled Consumer perceptions of alcohol and pregnancy health education materials has been approved by the University of Adelaide’s Human Research Ethics Committee (Approval Number: H-2022-153)