Fetal Alcohol Spectrum Disorder (FASD) will be in the spotlight this weekend when experts on FASD, parents, caregivers and professionals convene in Wellington to discuss the consequences of a diagnosis of FASD and approaches to assist those living with this lifelong disability.
The workshop on Saturday is being organized by FASD-CAN (Care Action Network), the national organization set up to support families with individuals with FASD. Claire Gyde, Chairperson for FASD-CAN, says the organisation is a not-for-profit charity set up seven years ago to unite caregivers, strengthen families and educate communities about FASD.
The conference is timed to mark International FASD day, the 9th day of the 9th month to reflect the 9 months of pregnancy when women should avoid alcohol to prevent the risk of FASD. The conference will be addressed by a range of speakers including Paula Tesoriero, the Disabilities Commissioner, Dr Valerie McGinn a neuropsychologist prominent in New Zealand for diagnosing and advocating for individuals with FASD and the patron of the organization, Judge Tony Fitzgerald. Other speakers will cover emotional regulation, Maori models of care and progress of the government’s 3 year Action Plan on FASD, which has just been completed.
FASD is recognized as one of the leading causes of developmental disability in the western world, with an estimated incidence of 3-5% in New Zealand, which means out of 70,000 annual births, at least 3000 children could be affected every year. “Over a 20-year cohort that’s 60,000 children and young people,” says Claire. “It is a huge and largely ignored problem in Aotearoa.”
FASD is often described as a ‘hidden disability’ as it is often undiagnosed. The effects of prenatal exposure to alcohol are variable and every individual affected is different. Different parts of the brain may be affected resulting in variable effects on IQ, emotional regulation, ability to plan, executive functioning, impulsivity and connecting consequences with actions. Individuals with FASD can be emotionally dysregulated which makes them volatile. They often have memory issues and can’t recall events in sequence which looks like they are lying. They can struggle to pay attention and have spiky learning patterns so appear to have heard something one day and forget it the next day.
Claire says “Without appropriate support and understanding, those with FASD often end up leaving school with no qualifications and with damaged self-worth. This can then lead on to depression and mental health issues. Sadly, many end up on the wrong side of the law. We need a circle of care around parents and caregivers. They are the ones doing the hard yards”.
One key goal of FASD-CAN is to have the disorder recognised as a disability. The organization continues to work alongside professionals, with the support of the Children’s Commissioner Andrew Beecroft and the Disability Commissioner Paula Tesoriero, to raise awareness and push for FASD to be formally recognized as a disability, as autism is.
“It opens up the pathways to service provision,” Claire says, which means those diagnosed can receive help and support to live as independent a life as possible.
“However, I’m conscious that service providers won’t know what to do if we get an influx of people so there also needs to subsequent funding to carry out systematic training.”
Details of the workshop are on the FASD-CAN website www.fasd-can.org.nz