Why is FASD diagnosis important?

What is FASD?

Fetal Alcohol Spectrum Disorder (FASD) is a term describing a range of life-long effects on a person due to prenatal alcohol exposure.^{1, 2}

These effects range from mild to severe. This depends on the amount and frequency of drinking during pregnancy, and other factors like the parent’s nutrition and genetics.³

The main impacts of FASD are on a person’s learning, memory, behaviour and development.⁴

We've known for a long time that high levels of drinking during pregnancy can result in FASD.⁵ But we now know that even low levels of drinking during pregnancy can have an impact on a child’s development.⁶

You can read more about FASD prevention in our Mini Bulletin report.

And read our insight to find out more about alcohol and pregnancy, or visit the Every Moment Matters website.

International FASD Awareness Day

September 9 is International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day.

It’s a day to raise awareness about FASD and inspire positive change for those impacted.

The day also highlights the importance of being alcohol-free during pregnancy to prevent FASD.

FASD is a community-wide issue that requires community support. You can find out more on the NoFASD Australia website.

Why is it important to identify children with FASD?

For people living with FASD, the impacts are lifelong.⁴

Being diagnosed is important because it means that the person affected, and their family, can be provided with support. Early diagnosis and support results in better social and physical health.⁴

It also means families can be provided with help to manage the challenges they might experience.

Why does FASD often go undiagnosed?

In Australia, FASD is under-recognised and often goes undiagnosed.⁷

FASD may also be more common than previously thought or currently reported.^{8, 9}

The reasons why include:

• even low levels of drinking can impact development and may cause FASD.⁶
• capacity of service providers and capability of practitioners to diagnose it has been limited.²
• there’s a lot of stigma associated with FASD. Women don’t speak about drinking during pregnancy for fear of being judged. Clinicians also may not ask for fear of stigmatising the parent-to-be.^{10, 11}

In 2020, the Australian Guide to the Diagnosis of FASD was updated to help define what’s needed for a FASD diagnosis.⁸

A diagnosis requires:

• evidence of pre-natal alcohol exposure, and
• severe impairment in three or more areas of brain structure or function.⁸

Supporting diagnosis in Victoria

Until recently, clinics that diagnose FASD in Victoria were limited. This meant that families were either waiting a long time to access the services, or they had to travel interstate to receive a diagnosis.

The Victorian Fetal Alcohol Service (VicFAS) is a state-wide service consisting of a team of clinical experts who:

• help services diagnose and meet the needs of children (3-10yrs) with FASD
• provide training to local clinicians so they can deliver diagnostic services in the future.

How is FASD assessed?

At VicFAS, children are referred to the service by their paediatrician.

After a referral to VicFAS, the team gathers information about the child from a range of people, such as their doctor, school and family.

Then VicFAS brings together a range of specialists to meet with the child and their family/carers to help support the assessment process.

It is through this process that a formal diagnosis can be made, and information given about how to best support the child at home and at school.

Support may include:

• helping families understand their child’s behaviours
• simplifying routines and providing structure and supervision
• referrals to the NDIS for speech therapy, occupational therapy or psychological supports
• FASD education for parents, carers, teachers and professionals.

Supporting children across regional Victoria

To support families living in regional Victoria, VicFAS provides diagnostic services and training in regional areas. In January 2022, VicFAS received further federal government funding to expand these services to more regional areas over the next 3 years.¹²

Existing local health care providers are included in the diagnosis process. This helps the VicFAS team get to know each child better. It also gives existing health care providers a chance to learn about FASD diagnosis and support.

VicFAS engages with paediatric community health teams who are keen to develop skills in this area.

VicFAS also support regional community health teams to make FASD diagnosis through secondary consultation – providing advice, guidance and expertise remotely.

Want to know more about FASD diagnosis?

The FASD Hub provides current information about diagnosis, training and education, and supports for health professionals. Current training opportunities are here and a directory of services is located here.

If you would like further information about supporting children with FASD, you can find a summary on the Australian Institute of Family Studies website.

There’s more information for parents/carers located on NOFASD.

If you want to access diagnosis services for your child in Victoria, you can speak to your GP, and take a look at the VicFAS service.