FETAL ALCOHOL SPECTRUM DISORDER

Fetal Alcohol Spectrum Disorder (FASD) is an overarching diagnostic term for a complex array of physical, cognitive, behavioural and learning issues that can occur for someone whose mother drank alcohol during pregnancy. Such effects have life-long implications. 

There is no known safe amount of alcohol to drink during pregnancy; the health advice is very clear that all expectant mothers should avoid alcohol entirely. However in any individual the risk of FASD does seem to depend on the amount of alcohol consumed, as well as its frequency and timing. Other risk factors may include smoking, diet and women being older.

“FASD affects about 50 percent of children and young people in Child, Youth and Family (CYF) care” (FASD Working Group, 2016, p. 1). This quotation about children and young people in OOHC is from the New Zealand government’s interagency 2016-19 national FASD action plan. A similar statement appears on the current Oranga Tamariki – Ministry for Children practice centre website: “Studies suggest 30–50% of children and young people in care may have FASD”.

However, in my view assertions about such high prevalence rates are not supported by the current research evidence. While one widely-cited Canadian Institute of Health Economics systematic review in 2013 did indeed find that 30-50% of children in care had FASD, this finding was based on only three research studies and likely has limited generalisability beyond children born in former Soviet Union countries i.e. one Swedish study of adoptees from Eastern Europe (52% with FASD), a study from the Netherlands on adoptees from Russia (30.5% with FASD), and another on children in Lithuanian orphanages (39.7% with FASD).

Raising awareness of FASD, and influencing others, is critically important. However, our organisations also have an ethical responsibility to take care in how we present research evidence and the claims that we make or imply. Exaggerating likely prevalence rates risks further stigmatising the mothers of children in care and reinforcing negative societal stereotypes of indigenous people. Having over recent years at last come to expect more for children in OOHC, It could also limit aspirations and be used to justify poor outcomes in relation to education, training, employment, and offending etc.

That all said, from other research evidence, there is little doubt in my mind that New Zealand children in OOHC (and youth justice custody) are likely to be over-represented, and probably significantly so, among those with FASD. As such, all of those working in OOHC have a major role to play in the recognition of FASD and integrating FASD-informed approaches into care and support planning; with the development of more FASD diagnostic and assessment services in some jurisdictions, many now also have interagency training in place for practitioners and their managers, to help them better support children and adults with this condition.

As well as recognising and responding to FASD, those working in OOHC also have a sometimes overlooked role to play in relation to prevention. With some US research suggesting that (children and) young women with an OOHC background are more than twice as likely to get pregnant before the age of 19 than their non-OOHC peers, the importance of them having a close connection to and relationship with at least one trusted knowledgeable adult, and likely a secure and stable placement or living situation as well, is surely particularly important? Maybe that’s a research topic for a later date i.e. what is the relationship between the quality of an OOHC system, and young women with an OOHC background giving birth to babies with FASD?

How is increased FASD-awareness changing how your organisation works with some children and young people in, or leaving, OOHC?