FAQ’s about FASD Diagnosis and Assessment

It is much better if your child has the right diagnosis, as this means they will receive appropriate services and supports. Research has found that misdiagnosis can have a negative impact on your child’s development and mental health.

FASD is currently under-recognised and under-diagnosed. Many health professionals are not trained and lack confidence in assessing and diagnosing FASD. See NOFASD’s information about diagnosis and the FASD Hub Australia’s guide to diagnosis.

People also ask:

• What is needed to make a FASD diagnosis, and where can I go?
• I think my child might have FASD, how can I find out?

A diagnostic assessment for FASD is conducted by a multidisciplinary team, to enable accurate assessment of the range of outcomes that may be associated with prenatal alcohol exposure. You will need a referral from a General Practitioner (GP) or another medical professional before you can get an appointment with a FASD clinic or FASD-informed service. There are a number of specialist FASD clinics that are currently operating in Australia. See the FASD Hub’s service directory of professionals with FASD experience and expertise. You can also call NOFASD on 1800 860 613 (free call) or contact us for information on referral options. The NOFASD website has links to a range of support services that may be helpful.

A multidisciplinary team at a Specialist FASD Clinic is the best option for diagnosis, however, if you are not able to get to a clinic there are lots of other options available. Read our information on FASD diagnosis, check the FASD Hub’s service directory of professionals with FASD expertise, and contact NOFASD if you have more questions or need support with the diagnostic process.

Assessment and diagnosis of FASD is important. Receiving an accurate diagnosis provides understanding for families, improved access to services, and better life outcomes for the individual. Research has found that early diagnosis of FASD is a protective factor, reducing the likelihood that your child will develop secondary conditions in addition to their FASD symptoms. Secondary conditions include difficulties such as poor mental health, trouble at school, trouble with the law and challenges living independently. A medical diagnosis of FASD will help anyone who is working with your child to better understand that their learning and behavioural issues are a symptom of FASD, and this helps when making plans to support your child with the challenges they face.

 Your unique child will always be more than their diagnosis. Watch adult with FASD Myles Himmelreich talk about being more than a label. 

 When children or adults have no visible signs of prenatal alcohol exposure, their problems may be wrongly blamed on poor parenting or on other disorders (for example Oppositional Defiant Disorder, ADHD or Autism Spectrum Disorder). FASD is a unique and complex disability, meaning the interventions that work best are often specific to FASD. See the FASD Hub’s information on why diagnosis is important.

The FASD Hub maintains a service directory of professionals with FASD experience and expertise. If you cannot see your specialist listed in the directory, you are within your rights to ask them or their reception staff how much training they have had in FASD. NOFASD Australia offers a free Foundations in FASD Course which comes with a certificate – you may choose to ask your service provider for a copy of their certificate before you make an appointment.

If you are having trouble finding a doctor, paediatrician, or other clinician who is FASD-informed contact NOFASD for advice.

In Australia, the options are currently limited. At this time there are few diagnosticians and access might depend where you live in Australia, waiting lists, the age of your child, what school communities might offer, how well we can jointly advocate. Even so, we can try to connect you with professionals in your community.

As outlined in this brochure – Fetal Alcohol Spectrum Disorder (FASD) the preventable disability:

• Infants may have a low birth weight but not be premature; they might experience irritability, sensitivity to light, noises and/or touch, feeding problems and a failure to thrive.
• Toddlers may exhibit memory problems, hyperactivity, a lack of fear, a poor sense of boundaries and impairment in gross or fine motor skills, which may result in poor balance or clumsiness.
• Children may develop more slowly and have a difficult time learning and controlling their behaviours. Most children with FASD have developmental delays and they may also have intellectual impairment, although their IQ may be in the normal range (70 – 130). They may master a new task one day, and not remember the next day. They may also have problems with attention span and/or hyperactivity (ADD/ADHD), have limited and/ or appropriate communication skills and experience difficulties with learning such as the concepts required to do maths. A minority of children with FASD may also be small in stature, their faces may look different, and they may have vision and/or hearing problems.
• Older children may have low self-esteem because of an awareness of “difference”, or because they have trouble keeping up or fitting in at school. Teenagers may exhibit the social skills of a 6–8-year-old; show poor impulse control; may not distinguish between appropriate public and private behaviours; may not follow rules. Concepts must be re-taught daily. Most become isolated because they find it difficult to sustain friendships with their peers and truanting from school, mixing with ‘unsafe’ individuals and groups, criminal behaviours, higher risk of alcohol and other substance use, and separation from family support can result.

Please remember that these are indicators only – it takes a multidisciplinary team to diagnose FASD. If you have concerns, speak to your GP or paediatrician or contact NOFASD. You may choose to complete the FASD checklist or check out NOFASD’s common behaviours and features and characteristics across the lifespan.

Speak to your Family Doctor, request referral to a FASD specialist from the FASD Hub’s service directory or call the NOFASD Helpline on 1800 860 613.

People also ask:

• What do I do if I am worried my child might have Fetal Alcohol Syndrome?

Fetal Alcohol Spectrum was a diagnosis used from 1973 until the Australian guidelines came into effect in 2016. The correct terminology is Fetal Alcohol Spectrum Disorder or FASD:

Fetal (the accepted spelling in the medical community. The word Foetal is not used. Some people think ‘fetal’ is an Americanisation of ‘foetal’, but this is not the case).

Alcohol

Spectrum (not syndrome)

Disorder.

The practitioner who made the FASD diagnosis will be able to provide you with information and support on the next steps to take. You may find valuable guidance in NOFASD’s parent/carer toolkit and other resources. You may have feelings of shock, grief, anger and a range of other emotions – these are all normal and it’s important that you take care of yourself. You may find these webinars on carer resilience or online support groups valuable.

When you are ready, you and your family will benefit from learning more about FASD. You may like to contact NOFASD to request a support pack, download the FASD-informed book Strategies not Solutions, or order the highly acclaimed book Trying Differently rather than Harder, which many parents describe as life changing.

People also ask:

• What can I do if my child has been diagnosed with Fetal Alcohol Syndrome (FAS)?

You could print and complete this FASD checklist and take the results to your GP or paediatrician to discuss. This is just a simple tool to start the conversation, it cannot provide a diagnosis. Using this information, your GP can refer you to a FASD Clinic who can conduct an assessment with your child. You may also like to discuss your concerns with the FASD Helpline staff on 1800 860 613.