2. Improving the lives of persons with FASD and their families/whanau

FASD is considered a neurodisability

FASD is a complex neurodevelopmental disability that can adversely affects many facets of an individual’s life. Secondary disabilities such as mental health disorders, school failure, unemployment, alcohol and other drug dependence and trouble with the law may arise in persons affected by FASD [17].

It is important to know that the adverse social and mental health outcomes for persons with FASD (and their families, etc.) are preventable. Understanding and appropriate intervention is critical across the lifespan for someone with FASD, to optimise their functional competence and reduce the likelihood of adverse outcomes emerging.

Diagnosis of FASD in New Zealand

New Zealand has been slow to develop multidisciplinary team diagnosis and there are very few centres able to specialise and little research. Consequently, FASD remains significantly under-recognised. This leads to the needs of affected individuals and their families inappropriately treated or eligible for existing services.

Parents and caregivers raising children affected by FASD are often judged as poor parents who have failed to properly discipline their child whose behaviour is viewed as wilful disobedience.  For a child with a hidden neurodisability, traditional methods of parenting (e.g. using negative consequences to teach a lesson) are not very effective for a child with a brain-based neurodisability that prevents learning in that way.  It is not unlike punishing a blind child for failing to write neatly.  Raising a child with a hidden neurodisability in a world that does not understand is a stressful and isolating experience for families. To then be ineligible for services available to other types of disabilities adds hugely to their burden of care. 

In a vicious circle of misunderstanding, punishment and failure, lives can unravel.  This status quo is not acceptable nor is it inevitable. It requires a lot more effort on the part of those with influence to firstly understand the need and take the much steps to improve the situation. 

Early accurate diagnosis and appropriate interventions based on the individual neurodevelopmental needs across the lifespan is protective against negative secondary outcomes developing. This firstly requires a trained multidisciplinary team to assess the extent of deficits needing support and areas of strength that can be positively developed. 

New Zealand (and Australian) clinics able to assess for FASD follow the Canadian Guidelines for Diagnosis [18].  However, few health services in New Zealand are currently able to provide an accurate FASD team assessment and diagnosis, leaving individuals and their families adrift to fend for themselves without acknowledgement or support. 

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