Foetal Alcohol Spectrum Disorder: What doctors and schools need to know

With Sandra Butcher, Chief Executive of The National Organisation for FASD and Brian Roberts, consultant and former Virtual School Head

We assume that most women know that drinking alcohol in pregnancy is not recommended, because of the potential impact on the unborn child. Sadly, for whatever reason, babies are still being born with their development affected by the in utero effects of the consumption of alcohol.

These effects include a spectrum of disability of structural, behavioural and neurocognitive impairments that can vary between children. It's a preventable disability known as Foetal Alcohol Spectrum Disorder (FASD). FASD remains very under-recognised in both the medical and education professions.

Sandra Butcher is Chief Executive of The National Organisation for FASD and has written this article for us today to raise awareness of FASD and new assessment guidelines have just been published by the government

FASD comes into the sunlight, by Sandra Butcher of National FASD

What if there was another neurodevelopmental condition that might be twice as prevalent as autism and which is preventable? What if in classrooms and homes across this country there were thousands of people who faced undiagnosed or misdiagnosed brain-based challenges that are linked with some 400 related conditions that can impact everything from, bones, organs, sensory processing and more.

What if once this condition was recognised, diagnosed and appropriately supported, it could lead to significantly brighter life chances for those affected, avoiding the negative outcomes that can make you weep: mental health problems, addictions, homelessness, problems with the justice system, sexual vulnerabilities, unemployment, and more.

What if we knew the rates were higher among some populations like those who are in care or who have been adopted?

We’d take action, right? 

Finally, nearly five decades after the first FASD diagnosis appeared, we are. 

September is Foetal Alcohol Spectrum Disorder Awareness Month
September is FASD Awareness Month

Official recognition will lead to more diagnosed with FASD in classrooms

FASD (Fetal Alcohol Spectrum Disorder) is coming into the official sunlight nearly 15 years after the British Medical Association (BMA) first issued its seminal report on FASD, and five years after the Chief Medical Officers changed their guidance in 2016 to say that it’s safest to avoid alcohol in pregnancy to keep risks to the baby to a minimum.

The Department of Health and Social Care released its first FASD Health Needs Assessment for England on September 9th, International FASD Awareness Day, during a special session of the All-Party Parliamentary group on FASD. It was linked with a virtual National Dialogue on International FASD Day Conference, from Sheffield Safeguarding Children Partnership, which had nearly 700 people registered.

Sophie - book cover
Picture is by Sophie, age 11. She wants people to know she has found different ways to cope with FASD, and “You can find ways to control it.”

What is Foetal Alcohol Spectrum Disorder (FASD)?

Foetal Alcohol Spectrum Disorder results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum.

Each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong neurodevelopmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning.”

(Source: FASD: Preferred UK Language Guide, Seashell Trust/National FASD, 2020)

Scientific consensus is in: FASD is real and it’s pervasive

The UK’s first active-case ascertainment study (currently awaiting peer review) showed that in schools, between 1.8%–3.6% of students have FASD, all of those identified in the study had been undiagnosed previously. This study is in line with international figures and begs for funding for a wider scale UK study.

It’s time for schools to train up on Foetal Alcohol Spectrum Disorder

These figures should make every local authority, SENCO, social worker, teacher, Clinical Care Group and NHS Trust take note. FASD is a leading cause of neurodevelopmental disability. Most affected remain undiagnosed or misdiagnosed, wasting critical resources on strategies that do not work when there are tools to support people with FASD.

Too often professionals use dated thinking, not realising that less than 10% of those with FASD have sentinel facial features and that most often the full impact of alcohol exposure in utero might not be obvious until the child is in school, with the transition to secondary school being a key moment.

The draft NICE Quality Standard includes a care management plan for those with FASD. Therefore, educators will need to better understand how to support those with FASD.

“The Misunderstoods: Living FASD” game being released this month, developed under a DHSC grant.
“The Misunderstoods: Living FASD” game being released this month, developed under a DHSC grant.

Recent case: FASD should have the same access to support as other neurodevelopmental conditions

Some with FASD have IQs under 70 and qualify as learning disabled, but the majority do not. Yet according to diagnostic guidelines, all with FASD have “pervasive and long-standing brain dysfunction, which is defined by severe impairment…in three or more … neurodevelopmental areas.” 

Denying people with FASD access to services only for those with “autism or learning disabilities” has been recently highlighted. The Local Government and Social Care Ombudsman (LGSCO) criticised a local council for ‘gatekeeping’ services and criticised them for delaying access to appropriate assessment and schooling for a child with FASD. 

CCGs and NHS Trusts have to ‘have regard’ for NICE Quality Standards. The Quality Standard on FASD likely will have an emphasis on training and new care management plans for those with FASD. CCGs and Trusts will have to show how they are making progress on improving the quality of care for those with FASD. 

New resources available about Foetal Alcohol Spectrum Disorder

The good news is that there are new resources available (co-created with experts and those with FASD), as part of a partnership between The Seashell Trust and National FASD funded by the DHSC. A new Best Practice in FASD Training Guide is available alongside the FASD: UK Preferred Language Guide.  

New training was created under this grant, including a three-day ‘child-centred training’ built around a ‘world-class’ Me and My FASD Toolkit. It has been designed to help SENCOs, learning disability nurses and others work with young people with FASD, so that they understand and own their diagnosis, featuring The Misunderstoods game (being launched this month), a “Break it Down Board,” an interactive comic and other resources.  National FASD also has created a new Intro to FASD e-learning developed with support from the Greater Manchester Health and Social Care Partnership. 

Other groups in the FASD UK Alliance have been gearing up their resources and training in local areas and regions across the UK. Notably, the FASD Hub Scotland has new resources for education. NHS Ayrshire and Aran FAAS team in Scotland has a resource for educators too. 

Times are indeed changing. Everyone in the special needs community should be now asking themselves, how can I create brighter futures for those with FASD?

Sandra Butcher is chief executive of The National Organisation for FASD. Brian Roberts is a consultant and former Virtual School Head. Both parent children with FASD.

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