FASD Assessment and Diagnosis

Diagnosis of FASD
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Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability caused by exposure to alcohol before birth. It is the most common preventable non-genetic cause of developmental disability in Australia. 

Although the use of ‘fetal’ may imply that it only relates to babies, the effects of FASD may not be seen at birth. It is a lifelong condition and can be diagnosed in children, young people and adults.

In Australia, FASD is underdiagnosed and often misdiagnosed for a number of reasons, including health professionals feeling uncomfortable asking about prenatal alcohol exposure, and families wanting to avoid potential ‘stigma’ from a formal diagnosis.

However we know that an accurate diagnosis is important because it helps people with FASD – and their families – understand their unique limitations and strengths, and be able to access appropriate services and support.

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Frequently asked questions about the assessment and diagnosis of FASD in Australia

The first step towards a diagnostic assessment for FASD is to make an appointment with your:

  • Paediatrician
  • General Practitioner (GP)
  • Psychiatrist

A referral will then be made to other health professionals for screening and assessment.

Visit the FASD Hub Service Directory for a list of FASD-informed clinicians working across Australia.

Going through an assessment and learning you/or your child has FASD can be a very challenging time, but people with FASD and their parents & carers also report benefits from finally understanding the cause of their child’s difficulties.

Read more about the benefits of a FASD diagnosis

Your doctor will need to record some information about you/or your child. As a parent or caregiver you may be asked to complete a form before you come to the appointment or to bring the information with you to the appointment. The following is a list of the type of information you may be asked to bring.

You may not have all of this information but bring as much as you can.

  • Birth records – date of birth, weight, length
  • Child health records – history of growth, weight, height
  • Medical history such as illnesses, surgery, vision or hearing problems
  • School reports and any issues that have been raised by teachers or the school
  • Photos of the child where you can see their face at different ages

The doctor will complete a medical assessment which will take about one hour. This will include testing hearing and vision, measuring height and weight and reviewing the documents you have brought to the appointment.

During your appointment tell the doctor about the child’s strengths and weaknesses, behaviour, any memory problems and how they relate to other people. Depending on the age of the child, let them talk about their own experiences.

The doctor may take a photo of the child’s face or look at the face and take measurements.

You/or your child may be referred to other health professionals who are skilled in doing different assessments.

Health professionals that may be involved in the assessment and diagnosis of FASD include:

Occupational Therapist (OT)
The occupational therapist will assess motor skills (such as walking, running, tying shoe laces), sensory processing (how we receive, organise and understand visual and auditory messages) and visual perceptual skills (making sense of what we see). For a young child this may involve doing things with their hands, like drawing, writing letters, matching shapes, cutting with scissors, threading beads, asking about the things they like or don’t like to play with because of the way they feel, taste, move or sound. This assessment may take about an hour.

Speech Pathologist
A speech pathologist will assess understanding of language, use of language, verbal reasoning and use of speech sounds. For a young child this will involve talking with them and showing some pictures or toys, finding how many words they know, how well they can talk about things and how well they can understand words and questions. This assessment may take an hour.

Psychologist
The psychological assessment involves tests of memory, problem solving skills, academic abilities and cognitive abilities (how we think, remember and learn). To assess a child, a psychologist, who has had special training in how children learn and how the brain works, will assess what your child knows and test their memory and understanding. This will involve answering questions, and for a young child working with puzzles and blocks and doing some writing activities. This assessment may take 2 hours.

Other health professionals and specialists
A range of other health professionals could be consulted for their expertise, for example a geneticist or radiologist.

Test results will then be sent to the initial referring doctor.

Usually you/or your child will have another appointment with the doctor. You may like to ask a support person, friend or relative to accompany you to this appointment.

The doctor will share and discuss the medical assessment and test results and final diagnosis which may be Fetal Alcohol Spectrum Disorder or another diagnosis.

You or your support person should ask questions and request a copy of the findings and diagnosis. These may be in the form of a letter or a report and the doctor may be able to provide this to you at the appointment or if not, post it to you after the appointment.

Discuss with the doctor what the ‘next steps’ are and plan where to go for treatment and services. Also ask if you can phone the doctor with questions once you have had time to read the information and discuss the diagnosis with members of your family.

The number of appointments and how these are arranged will also depend on where a person has their assessment conducted e.g. hospital, community clinic, paediatrician in private practice.

Depending on your personal circumstances the cost will vary. In a public system the cost of each assessment may be covered but you will need to ask if there are any extra expenses. If you have a diagnostic assessment in the private system you will need to ask the clinic or doctor’s practice about the cost of all the assessments and how much is covered by Medicare. If you have private health insurance contact them to find out how much you will be able to claim.

Learn more about FASD and Medicare

If you would like to talk to someone before, during or after the diagnostic assessment the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD Australia) provides free and confidential support, information for families caring for people who have or are suspected of having FASD.

Australian families with children who have a confirmed FASD diagnosis and are under 15 years old are invited to participate in the FASD Australian Registry (FASDAR).

A registry is a collection of information about individuals with a specific diagnosis or condition. The FASDAR aims to maintain a central database of FASD cases in order to develop a greater understanding of FASD, inform new research, and help provide information to families regarding new services, effective treatments, peer support, and resources.

Find out more and register your interest on the FASDAR website.

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Why is a diagnosis for FASD important?

Hear from people with FASD – and their families – about how receiving a diagnosis for FASD helped them better understand themselves and access supports and services to help them thrive in their day-to-day lives.

FASD Hub Service Directory

Find FASD-informed health professionals across Australia to help with the assessment, diagnosis and management of Fetal Alcohol Spectrum Disorder.

The Australian Guide to diagnosis of FASD

Access the The Australian Guide to the diagnosis of FASD including the diagnostic tool, forms, resources and information sheets.

Brain Impairments with FASD

Read about the 10 neurodevelopmental domains involved in the diagnosis of FASD and the different challenges that people with FASD may face.

eLearning Opportunities

View the FASD Hub eLearning modules designed for health professionals involved in Fetal Alcohol Spectrum Disorder (FASD) assessment and diagnosis.

Medicare and FASD

Learn more about how to navigate the Medicare system for FASD-related services.

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Disclaimer

Information provided on the FASD Hub Australia website is for educational purposes only and is not meant to substitute for the advice of a doctor or other health professional. You must not rely on this website as an alternative to seeking an appointment with a health professional. If you have concerns about your own health or that of your children, consult with a registered and qualified health professional.

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Acknowledgement of Country

FASD Hub Australia acknowledges Aboriginal and Torres Strait Islander peoples as the Traditional Custodians of Country throughout Australia, and we recognise their connections to land, water and community. We pay our respect to their elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples.

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