Case for Change

There are two important components in preventing the harm from Fetal Alcohol Spectrum Disorder:

  1. Preventing FASD by supporting alcohol-free pregnancies
  2. Enabling effective and appropriate care for persons affected by FASD

There is strong evidence that both components are essential in reducing harm from this preventable disability. Click below to learn more or click the button for the Health Promotion Agency infosheet.

ALCOHOL-FREE PREGNANCY KEY MESSAGES

 

FASD is preventable

First and foremost FASD is a preventable disability.

Since the introduction of alcohol into New Zealand by European settlers, Maori society recognised this adverse outcome and called for greater control of the supply to Iwi and hapu [14].

However, it took until the end of the 20th Century before New Zealand authorities accepted that drinking during pregnancy posed a significant risk to public health and well-being and began to take steps to address the problem. 


How many babies may be affected each year?

Although not all alcohol-exposed pregnancies will result in FASD, conservatively the rate is estimated at 1 in 100 live births and up to 1 in 20 in communities that experience higher rates of alcohol use [15,16].

Pregnant women do not deliberately set out to cause brain damage in their unborn child.  There are many wider factors which contribute to drinking in pregnancy:

  • A normalisation of drinking (and heavy drinking) among women has occurred over the past few decades.
  • Many women may not know they are pregnant when they are drinking.  At least 50% of pregnancies in New Zealand are unplanned with the result that many women will be unaware they are pregnant while drinking.
  • Young women are often targeted for alcohol promotion through advertising, social media and alcoholic products which are designed to appeal to their tastes (e.g. RTDs).
  • Many health professionals do not routinely ask women of childbearing age about their alcohol use.
  • There are societal and media myths about the safety of drinking during pregnancy
  • There are no mandatory Government health warnings of the risk of drinking during pregnancy on the product or at the point of sale. 
  • Some women have not been raised in a stable loving home with good role models.  Some may drink alcohol because of partner abuse, post-traumatic stress, depression, and/or addiction.
  • Some women may have been born affected by alcohol themselves impairing their judgement and behaviour. Drinking during pregnancy can be an inter-generational problem. 

Click here to go to the References.

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. 

Click here to go to the References.