A disorder falling through the cracks

Foetal Alcohol Spectrum Disorder is all too common, particularly among young people who end up in the criminal justice system, so why is there so little support for people suffering from it, asks Te Herenga Waka—Victoria University of Wellington's Dr Dougal Sutherland.

The brain.

The case of Teina Pora and his 2015 acquittal for murder highlighted the difficulties those with Foetal Alcohol Spectrum Disorder (FASD) can encounter, particularly in the criminal justice system.

Individuals with FASD experience learning difficulties, memory and executive functioning problems, communication difficulties, impulsivity and mood problems, and are at increased risk of developing mental health and addiction disorders. In the United States, it is estimated anywhere from 11 to 50 out of every 1000 children may be born with FASD.

We have no idea what this number is in New Zealand, as there are no dedicated FASD services in this country.

Anecdotal evidence suggests it is reasonably common and having a serious effect on New Zealand’s young people. A recent meeting of a group of psychologists in Wellington noted it is all too common for forensic psychologists to carry out assessments for FASD due to the number of young people presenting in court with suspected symptoms.

These young people have not been diagnosed or treated before they reach the courtroom because FASD falls between the cracks of services in New Zealand. It’s not officially considered a ‘mental disorder’, so mental health services do not provide care. It’s also not recognised as a disability the way intellectual disabilities or autism spectrum disorder are, and therefore doesn’t come under the remit of a District Health Board’s Child Development Services. Because FASD doesn’t fit into any system, it doesn’t get diagnosed, and even if it does get spotted early there are no support services available, despite the lifelong nature of this condition.

So why is this disorder overlooked? Perhaps because it’s seen as the fault of the mother for drinking during pregnancy. Yet those most at risk appear to be young mothers, many of whom may be unaware of their pregnancies until a later stage, especially as about a third of pregnancies are unplanned. Older mothers also report being given discrepant information while pregnant, with some mothers even being told to have a glass of stout every night during pregnancy as it’s “good for the bones”.

It seems education and support are crucial for addressing FASD, but who should be responsible for leading this?

At face value, it would seem to fit within the realm of ACC, with the ingestion of alcohol by a pregnant person seen as an ‘accident’. However, psychologists at the recent meeting in Wellington report that ACC has repeatedly turned down claims for cover, with one psychologist told by ACC that the mother should have known she was pregnant before drinking. There is a precedent for ACC to cover FASD, as it has previously provided support for Foetal Anticonvulsant Disorder, although in this case the funding was granted on the grounds of it being an unwanted side-effect of the mother’s medical treatment for epilepsy.

It would be more straightforward if the Ministry of Health and Disability Services funded support for FASD, just as they do for intellectual disabilities. However, to do so would require significant investment in both the capability and upskilling of the workforce. Child Development Services, which provide assessments for intellectual disabilities and Autism Spectrum Disorder, are already over-stretched, with waitlists 6–12 months long. FASD also requires the input of multiple health professionals—paediatricians, speech-language therapists and psychologists—all of whom would need support and training to recognise and treat this complex problem.

Until we see official recognition of FASD within the health system, we are likely to see more Teina Poras in the future, as they careen headfirst into the arms of the police and court system.

Dr Dougal Sutherland is a clinical psychologist and the Clinical Practice Manager in the School of Psychology at Te Herenga Waka—Victoria University of Wellington.

Read the original article on Newsroom.