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September 17, 2018

Creating equity for young people living with FASD

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To acknowledge the nine months of pregnancy, Fetal Alcohol Spectrum Disorder (FASD) Day is held on 9 September every year. This is a time to raise awareness of the spectrum of neurological conditions that may occur due to fetal alcohol exposure.

With a growing body of research investigating the causal pathways, diagnosis, treatment and ongoing management1 of FASD, it is becoming apparent that proper and appropriate management requires equitable access to diagnostic and management services.2

We take a look at the latest research from Western Australia, focusing on the juvenile justice system, and how early diagnosis and prevention efforts could have a broad and significant positive ripple effect.

What is FASD?

Fetal Alcohol Spectrum Disorder is an over-arching umbrella term that can be used to describe a range of effects from the exposure to alcohol in-utero.3

The effects can vary depending on the person, and can include a range of physical, behavioural and cognitive effects on the fetus, which are life-long.

The most extreme of these effects manifests as Fetal Alcohol Syndrome (FAS), which has varying impacts on the affected individual’s life and their support networks. The less extreme effects will vary depending on the person, as the pattern and timing of alcohol consumption will influence the overall development of FASD.4

Common characteristics of someone with FASD include difficulty in understanding cause and effect, learning from past experiences, and decision making.1,5

What this means is that a young person with FASD may become involved in a criminal activity due to a decreased cognitive ability to understand the consequences of what they are doing. They may also be unable to understand the processes involved in the justice system once they enter it, making it difficult for them to learn from their actions.

This can lead to recidivism and subsequently repeated entry into the juvenile justice system.6

Over-representation in juvenile justice

A 2018 study conducted by Bower and colleagues set out to investigate the prevalence of FASD among young people aged 10-17 years who were detained in Western Australia’s only youth detention centre.6 The study found that 89% of study participants had at least one domain of severe neurodevelopmental impairment, and 36% were diagnosed with FASD.6 This is the highest reported prevalence of FASD in the youth justice system worldwide – with previous recent Canadian studies finding a prevalence of between 10.9% and 23.3%.6

73% of young people in detention who participated in this study identified as Aboriginal, emphasising the ongoing over-representation of Aboriginal youth in custody.6

This prevalence is also presumed to be an underestimate due to several study limitations.

The researchers were not able to assess participants’ abilities in terms of two key cognitive processes, which may highlight FASD symptoms, and they were not able to confirm fetal alcohol exposure for some of the participants. They also were not able to complete neuroimaging to look at the structure of the brain for any of the participants, which may have resulted in additional FASD diagnoses.

This means that the prevalence of FASD is most likely higher.6

Moving towards an equitable approach

A second study was conducted in tandem with the one above looking at the knowledge, attitudes, experiences and practices regarding FASD and other neurodevelopmental impairments among the officers who work at the youth detention centre.7 The aim was to develop training resources to better equip staff at youth detention facilities with the necessary skills to better manage behaviours of young people with FASD and other neurological impairments.

Over half of the custodial officers that participated in the study were unsure whether FASD was permanent brain damage, and unaware that it cannot be outgrown.7

An encouraging finding was that almost all custodial officers were willing to complete training to better understand FASD and how to apply this training when managing the behaviour of young people with FASD in detention.

These studies point to the changes that can be made in the system to better support young people with FASD and prevent the burden of disease on the broader community.

With more equitable access to diagnostic and treatment services, young people with FASD would be better equipped to move through the world.6 Occupational training regarding FASD and other neurological impairments would allow the broader youth justice workforce to manage negative behaviours in detention, and ultimately, better support these young people through the rehabilitation process.

References
  1. Rutman, D. (2016). Becoming FASD Informed: Strengthening Practice and Programs Working with Women wtih FASD. Substance Abuse: Research and Treatment, 10(S1), 13-20.
  2. Bower, C., & Elliot, E. J. (2016, April). Australian Guide to the diagnosis of FASD. Retrieved September 5, 2018, from FASD HUB Australia:
  3. Helgesson, G., Bertilsson, G., Domeij, H., Fahlstrom, G., Heintz, E., Hjerm, A., . . . Hultcrantz, M. (2018). Ethical aspects of diagnosis and interventions for children with Fetal Alcohol Spectrum Disorder (FASD) and their families. BMC Medical Ethics, 19(1), 1-7. doi:10.1186/s12910-017-0242-5
  4. Kapur, B. M., & Baber, M. (2018). FASD: folic acid and formic acid – an unholy alliance in the alcohol abusing mother. Biochem Cell Biology, 96, 189-197. doi:dx.doi.org/10.1139/bcb-2017-0079
  5. Department of the House of Representatives. (2012). Parliament of Australia. Retrieved from House of Representatives Committees – FASD The Hidden Harm – Inquiry into the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders
  6. Bower, C., Watkins, R. E., Mutch, R. C., Marriott, R., Freeman, J., Kippin, N. R., . . . Giglia, R. (2018). Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia. BMJ Open, 8, 1-10. doi:10.1136/bmjopen-2017-019605
  7. Passmore, H. M., Mutch, R. C., Burns, S., Watkins, R. E., Carapetis, J., Hall , G., & Bower, C. (2018). Fetal Alcohol Spectrum Disorder (FASD): Knowledge, attitudes, experiences and practices of the Western Australian youth custodial workforce. International Journal of Law and Psychiatry, 59, 44-52. doi:https://doi.org/10.1016/j.ijlp.2018.05.008