Fetal Alcohol Spectrum Disorder (FASD)

What is FASD?

FASD stands for Fetal¹ Alcohol Spectrum Disorder. It’s caused when a pregnancy is exposed to alcohol, which affects the brain and body before birth. At its core, FASD is a permanent neurodevelopmental condition (a condition that affects how the brain works). But it is also a spectrum, which means each person with FASD is affected differently. There is no treatment for FASD, but early diagnosis and support can help to limit its impact on a child’s life.  

Research shows that FASD can have over 400 co-occurring medical conditions. These can affect any part of the body, including the brain, which can make it even harder to diagnose and manage FASD. It is particularly important for foster carers to know this, because children and young people with care experience can also experience neurological injuries (like trauma and attachment problems) associated with their previous experiences.

How common is FASD? 

We don’t know exactly how many people are affected by FASD. This is because people with FASD can experience different symptoms, which are often similar to other conditions that are more well-known (autism, for example). One study in Peterborough suggests that as many as three per cent of children could have FASD. This rose to 27 per cent in looked after children.²  

We do know that FASD disproportionately affects children and young people who are in foster care Therefore, it’s really important that foster carers know the signs of FASD, and how to get support for a child who may be affected. 

What are the symptoms of FASD?

People with FASD are affected in different ways, which means it is difficult to list all of the possible symptoms. But the current guidance for diagnosing FASD asks doctors to look for a combination of three things:³ 

1. To actively consider prenatal alcohol exposure as a possible underlying cause for neurodevelopmental delay
2. Characteristic facial features (which occur in less than 10 per cent of people with FASD) 
3. The evidence of severe impairment in three neurodevelopmental areas (the evidence that someone is not as developed as other people of the same age in areas such as language, memory, attention, or motor skills such as balance or handwriting).

Children and adults with FASD may find it difficult to deal with information. They may find it hard to translate hearing into doing, thinking into saying, reading into speaking or feeling into words. They may also find it difficult to apply specific learning to new experiences or situations, for example, in noticing similarities and differences. This means they may not be able to see patterns, predict events or make judgments.

If you have any concerns about a child’s development, or think they could have FASD, it’s important to speak to a doctor as soon as possible. FASD is a permanent condition, but early diagnosis and the right support can help to reduce its impact on a child’s life.

How is FASD diagnosed?

Although it is possible to diagnose some cases of FASD at birth, it usually becomes more obvious as a child grows up. This is because as a child gets older, the gap between their development and the development of their peers becomes wider and more noticeable. For example, a child’s behaviour or learning difficulties may only become apparent when they start school and interact with lots of other children.

The consideration of whether a young person has been affected by prenatal alcohol exposure is already included in the statutory guidelines for looked after children’s medicals in England.⁴ However, it appears that this does not always happen in practice.

If you are ever worried about a child’s development, or think they may be affected by FASD, the first step is to speak to a doctor – in most cases, a GP or paediatrician. To help make a diagnosis of FASD, the doctor will want to know whether the child was exposed to the alcohol before birth.⁵ 

A doctor will carry out an initial assessment of the child, which might involve blood tests or a physical examination. Although professional understanding of FASD is growing, many doctors will still look for distinct facial features in the diagnosis. It is important to remember that less than 10 per cent of people affected by FASD will have distinct facial features, meaning most people will show no physical signs of the condition. The child may then be referred onto other health professionals (for example, a psychologist or a speech and language therapist) to further investigate their needs. 

It is only once all of these tests are complete that the doctor will be able to confirm or rule out a diagnosis of FASD. If the condition is diagnosed, it will be one of two subdivisions: FASD with sentinel facial features and FASD without sentinel facial features. 

Once FASD has been diagnosed, a team of healthcare professionals can support you with how to manage the child’s educational and behavioural needs. In the first instance, you should speak with the child’s social worker to assess what support should be made available to your child, which may include for their education. You should also speak with your fostering service about what additional support and training you might require. 

Where can I find support?

FASD is a lifelong condition, but diagnosis and the appropriate support can help any person living with the condition to live a fulfilled and happy life. Below is a list of some organisations who can offer  help, useful resources and the latest research and policy updates. 

Organisations who can help

• The National Organisation for FASD is the leading organisation dedicated to supporting people affected by FASD in the UK. They have a helpline which can be called on 020 8458 591 or contacted via email on info@nationalfasd.org.uk. They also offer comprehensive online training for parents and carers on how to provide help for a child with FASD.
• We (The Fostering Network) have helplines which offer advice, information and support about all aspects of fostering. 
• Adoption UK have a number of publications about FASD as well as useful information pages for carers and people affected. 
• FASD Network UK is a social enterprise which works with local authorities to offer training and support to foster carers, adoptive parents and birth families who are raising children with FASD. 
• Alcohol Focus Scotland are an organisation who aim to reduce the impact of alcohol on people’s lives in Scotland through the implementation of effective alcohol control policies and legislation.
• FASD Hub Scotland provides a tiered support service for parents and carers across Scotland, and the professional who work with and support these families.

Useful resources

• Anthony and Sue Sharp have co-produced the following publication with the Hertfordshire FASD Support Network and The National Organisation for FASD: FASD & Trauma: Parenting tips for foster carers. 
• Me and My FASD is a website from the National Organisation for FASD. It’s aimed at children and young people, helping them to understand their diagnosis and celebrate their differences, as well as  providing resources for those working with young people with FASD.
• Fostering Difference have produced the following guide for foster carers: Foster parents’ guide to supporting a child with Fetal Alcohol Spectrum Disorder. 

Research and policy

• The Fostering Network's children's unmet needs report based on the findings from our State of the Nation's Foster Care 2021 survey shows that children with FASD are not currently having all their needs met and makes recommendations for change. 
• An article in The Conversation by Cook and Mukherjee, FASD researchers,  is a useful round-up of where the UK is at in relation to FASD research and policy.
• The Time is Now report on the national perspective on ramping up FASD prevention, diagnosis and support services by National FASD.
• England and Wales NICE Quality Standard, published March 2022. 
• University of Salford prevalence study, published in 2021.

1. Fetal (as opposed to foetal) is now the accepted spelling in the UK in relation to FASD.
2. Gregory G, Reddy V, Young C (2015) Identifying children who are at risk of FASD in Peterborough: working in a community clinic without access to gold standard diagnosis Adoption & Fostering 39(3) 225-34
3. Clinical guidance on the diagnosis of FASD was published by SIGN for Scotland (SIGN, 156) in 2019 and adopted by NICE for England and Wales.
4. Department for Education and Department of Health and Social Care (2015) Promoting the health and wellbeing of looked-after children p.16
5. the following types of proof of prenatal alcohol exposure are generally accepted: reliable clinical observation; self-report or reports by a reliable source; medical records documenting positive blood alcohol concentrations, or alcohol treatment; or other social, legal or medical problems related to drinking during the pregnancy.

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