Open Doors Navigation System

What is FASD?

Fetal Alcohol Spectrum Disorders (FASD) is a term used for a spectrum of conditions caused by fetal alcohol exposure. Each condition and its diagnosis is based on the presentation of characteristic features which are unique to the individual and may be physical, developmental and/ or neurobehavioural.

Alcohol can cause damage to the unborn child at any time during pregnancy and the level of harm is dependent on the amount and frequency of alcohol use which may be moderated by factors such as intergenerational alcohol use, parent age and health of the mother (nutrition, tobacco use) and environmental factors like stress (exposure to violence, poverty).

Characteristic features (physical, developmental and/or neurobehavioural) within the FASD spectrum are seldom apparent at birth (unless the facial and growth factors related to Fetal Alcohol Syndrome are observable) and may not be noticed until the child reaches school age when behavioural and learning difficulties become problematic. Fetal Alcohol Syndrome is considered the most serious end of the spectrum and is the only diagnosis within the spectrum which carries with it characteristic facial features in addition to the neurobehavioural symptoms that affect individuals across the spectrum.

FASD is referred to as the ‘invisible disability’ as it often goes undetected, whether it be overlooked, ignored, attributed to another known non-genetic condition or even simply blamed on ‘poor’ parenting or post birth environments. There is a lack of understanding of FASD in the service provider community. Assessment and service provision is evidence based. The presentation of ‘problem’ behaviours and the absence of biomarkers will typically result in assumptions about the individual which are unfair rather than helpful strategies based on knowledge that FASDs are a physical brain-based condition with behaviours as symptomatic of the brain.

Click here to see the affect that alcohol has on the developing fetus during the different stages of gestation.

Diagnosing FASD

In 2014-2015 clinicians across the country trialled a FASD Diagnostic Instrument. The Diagnoistic Instrument is part of the Australian Guide to the Diagnosis of FASD that was developed by an Australian FASD Collaboration led by Professor Carol Bower from Telethon Kids Institute and Professor Elizabeth Elliott from the University of Sydney. As the Australian Guide to the Diagnosis of FASD was finalised, a revised Canadian guide on the diagnosis of FASD was published. The Australian Guide was reviewed and modifications made.

In early 2016 the Australian Expert Review Panel decided to harmonise the Australian diagnostic subcategories with those recommended in the Canadian Guidelines and to accept the overarching term of FASD and the diagnostic subcategories relating to the presence or absence of the three sentinel facial features.

Australian Diagnostic subcategories

  • FASD with three sentinel facial features (similar to the previous diagnostic category of Fetal Alcohol Syndrome)
  • FASD with less than three sentinel facial features (which encompasses the previous diagnostic categories of Partial Fetal Alcohol Syndrome and Neurodevelopmental Disorder-Alcohol Exposed)
click here for further information

Living with FASD

The primary conditions common to FASD last a lifetime and may include the following which vary from person to person:

  • learning difficulties
  • impulsiveness
  • difficulty relating actions to consequences
  • social relationships
  • attention/hyperactivity
  • memory
  • developmental delays
  • major organ damage

 

Typically, unrecognized brain impairment with primary symptoms result in misunderstanding by those with authority who cast individuals with FASD as defiant or lazy. In an effort to meet unrealistic expectations, the individual develops secondary defensive behaviours which are then paradoxically used to stereotype and label the individual according to the observed behaviour. This unfairness reinforces the invisibility of the brain-based condition and perpetuates the individual’s sense of failure as they ‘can’t do’, rather than ‘won’t do’. Failure to meet expectations and the development of defensive behaviours leads to an increased risk of tertiary conditions.

These tertiary conditions can include:

  • incomplete education
  • involvement in the criminal justice system
  • family and economic dependence
  • poverty and homelessness
  • alcohol and other substance abuse
  • sexual victimisation
  • unplanned and early parenthood
  • difficulty parenting and subsequent risk for children.

 

Environmental Accommodations and Early Intervention

FASD as a physical brain-based condition requires environmental accommodations as we would expect in the case of any other physical disability. With a correct diagnosis and/ or early neurobehavioural intervention, coupled with appropriate support for parents and carers during childhood, the learning and quality of life outcomes for individuals with FASD can be vastly improved.

For many adults living with FASD, ‘interdependence’ rather than a goal of ‘independence’ acknowledges the need for appropriate supports to sustain the capacity of the individual to engage in social and economic life. It is crucial that accommodations are developed in full consultation with the person living with FASD as the needs of every person are different.

Some useful support strategies and case-management approaches may include:

  • Non-traditional education approaches that recognise individuals living with FASD do not learn in mainstream approaches which implicitly rely on functioning memory, cause and effect reasoning, filtering of external stimuli, planning, sequencing and the acceptance of unexpected environmental change
  • Short term goal setting with realistic expectations, intensive support and follow-through
  • Memory prompts
  • Simple visual tools used for planning and sequencing activities within timelines
  • Concrete language, structure and routine
  • The use of the public trustee for financial management

 

For more information on strategies you can check out the selection of NOFASD Australia Fact Sheets. Please let us know if you have any suggestions which will help other parents and carers. NOFASD Australia Fact Sheets

For more in-depth information and academic references on FASD check the selection of publications and resources in the NOFASD Australia Research Library

The following short films provide an insight into living with FASD from the perspective of birth mothers and adoptive and foster families.

Recovering Hope – Mothers and Children on FASD: A four part series.

 

Part 1:

Part 2:

Part 3:

Part 4:

Latest news

You are invited to take part in an online consultation on the NDIS Code of Conduct

12-May-2017 : You are invited to take part in an online consultation on the NDIS Code of Conduct and to promote the consultation among your membership. The NDIS repr..

Your feedback

We are interested to hear your feedback on our new website. If you are searching for information about FASD that is not currently on this website please .

Please contact us

Share your story

We are inspired every day by the personal stories of individuals and families living with FASD. Help advocate for an improved quality of life for people living with FASD by sharing the highs and the lows of your personal story and strategies that others may find useful.

Share your story