Our statement
For immediate release
28 November 2025
Today’s BBC reports on adoption breakdown shines a light on the need for better information and support for families supporting children with complex needs, including FASD (Fetal Alcohol Spectrum Disorder) as mentioned in the report.
It’s time the veil is lifted on FASD, which is caused when prenatal alcohol exposure affects the developing brain and body in utero. With a rate of 2-4% for the general population and more than 27% for looked after children, FASD is one of society’s most pervasive neurodevelopmental conditions. In one area we were told that social care workers believe 100% of those up for adoption have been prenatally exposed to alcohol. In another area research showed it was 70%.
Social care workers, medical practitioners, educators and all those who support children in care and adopted children must have the latest scientific information about FASD, so that they can understand the critical lifelong importance of noting when there has been an alcohol-exposed pregnancy. Traditional strategies do not necessarily work for someone with FASD. While the focus is typically placed on the trauma-based needs, the research shows that without taking into consideration the underlying organic brain damage caused by prenatal alcohol exposure, typical strategies can backfire. Sadly, as today’s news story highlights, this can lead to adoption breakdown. Far too often this is due to families feeling this is the only way to get help in a system that is overstretched and underinformed. Unfortunately, that doesn’t always help the young person.
With any such discussion, we must never forget that at the core of these heartbreaking situations are some of society’s most vulnerable children who are entitled to proper assessment, diagnosis and informed support. The latest guidance emphasises the importance of early diagnosis and appropriate support at home, in school and in society. Trajectories can change. We know many, many people with FASD who live positive lives – but nearly all have stories of the impact on them of not being understood.
Since 2009 statutory guidance on promoting the health and wellbeing of looked-after children has called for medicals to pay particular attention to FASD. Guidelines now in place in Scotland, England, and Wales say that prenatal alcohol exposure should be ‘actively considered’ as a cause for neurodevelopmental delay or an unexplained departure from typical development. In England and Wales a NICE Quality Standard 204 says that children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties should be referred for assessment, and if FASD is found they should have a care management plan and input from FASD-informed professionals. Sadly, National FASD’s research shows that most NHS bodies are not taking action on the NICE Quality Standard and we know from talking with people with FASD and their families across the UK that services and understanding are patchy, quite often non-existent.
People with FASD want to be seen, heard and understood as they have said in the UK FASD Manifesto written by more than 60 with FASD. They ask that people “never give up on us.”
We stand with those on this difficult journey.
Ends
Media inquiries: [email protected] • 07920 747 560 • Case studies available
What are we calling for?
We have lots of ideas on how to improve things. Here are a few of the items on our wish list. We are happy to discuss these and other possible steps forward.
- Policy makers to meet with people with FASD and their families.
- An FASD Prevention and Response Fund equivalent to 0.2% of the alcohol duty. This could help fund a National Centre for FASD Excellence for FASD research and training, a national prevalence study as called for by the DHSC and funding for charities and third sector organisations on the frontline providing support and developing resources around the issues associated with FASD.
- FASD-informed training should be conducted across all sectors, as called for by NICE, and including education and social care. We are especially concerned that any changes to the SEND system and Education, Health and Care Plans should carefully consider students with FASD who will have individualised needs and complex needs.
- Joined up thinking on approaches to neurodevelopmental conditions, ensuring that FASD is included in all of the work being done on Autism and Learning Disabilities – and would encourage instead using the more inclusive phrase Neurodevelopmental Disabilities or Conditions.
- Family Hubs should prioritise FASD prevention and support, starting with training for their staff and provision of resources about alcohol and pregnancy and FASD.
- Digital health records for maternity services need to be updated to include mandatory and consistent coding and prompts for discussing and recording dose, pattern and timing of alcohol- exposed pregnancies.
- In response to NICE QS 204 Statements 1-2, National FASD calls for greater efforts nationally, regionally and locally to raise awareness of the risks of alcohol in pregnancy at least on scale with smoking in pregnancy public health campaigns, including posters and banners about the risk of prenatal alcohol exposure in maternity waiting areas and adverts about alcohol-free pregnancies in NHS social media channels and in which NICE QS 204 recommendations are followed that women are given information about prevention of further harm if PAE stopped and referrals to appropriate service/ specialist midwife.
- With regards to NICE QS 204 Statements 3 and 4 steps needs to be taken to increase local and regional diagnostic capacity including FASD training, staffing and commissioning for diagnostic pathways either via paediatric or neurodevelopmental services. Special attention should be given to training, hiring and licensing of clinical psychologists and other professionals to conduct the neurodevelopmental assessments called for in NICE QS 204. Funding should be made available to implement the DHSC FASD Health Needs Assessment recommendation for a Hub and Spoke working model, including support for the national FASD clinic in Surrey, on a spend-to-save basis to help jump-start services.
- NICE QS 204 Statement 5 calls for management plans for people with FASD but this is not happening. Each area needs to have a plan in place for post-diagnostic support
Background about FASD
“FASD 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)
“There is no known safe level of alcohol consumption during pregnancy. NICE, Fetal Alcohol Spectrum Disorder Quality Standard 204(2022).
“If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all, to keep risks to your baby to a minimum.” Chief Medical Officers guidance(2016)
“There is no known safe level of alcohol consumption in pregnancy. Even low to moderate levels of PAE [prenatal alcohol exposure] can negatively impact a fetus and these adverse consequences can persist into adulthood.” SIGN 156, “Children and Young People Prenatally Exposed to Alcohol” (2019)
Over 40% of womenin the UK use alcohol during pregnancy, making the UK the 4th highest rate of alcohol exposed pregnancies in the world. (This is higher than the rate of tobacco-exposed pregnancies.)
A gold-standard studyby the University of Salford showed that 2-4% have FASD. That’s a higher rate than autism. Most people with FASD are unrecognised, undiagnosed or misdiagnosed.
“The government recognises the importance of FASD.” Department of Health and Social Care, “FASD Health Needs Assessment for England” (2021)
“There is no ‘mild’ FASD.” “FASD Health Needs Assessment for England” (2021)
“Prenatal alcohol exposure should be actively considered as a possible underlying cause for neurodevelopmental delay.” SIGN 156, “Children and Young People Prenatally Exposed to Alcohol” (2019)
“The needs identified for this population group focus on: a lack of robust prevalence estimates in England; the importance of multi-sector working to support individuals through the life course; better training and awareness for health professionals; better organisation of services to improve accessibility; a need to develop innovative approaches to support those living with the condition.” “FASD Health Needs Assessment for England” (2021)
NICE Quality Standard 204 (2022) identifies areas for improving quality of care regarding: advice on avoiding alcohol in pregnancy; prenatal alcohol exposure; referral for assessment; neurodevelopmental assessment; and management plan. Unlike guidance, local areas in England and Wales have to ‘have regard’ for Quality Standards and report on progress in improving care.
“No specific public health messaging on fetal alcohol spectrum disorder (FASD) has been undertaken in the last five years.” Maggie Throup, Parliamentary Under-Secretary for Health and Social Care, Hansard, 21 Sept 2021 (Note this coincides with the 2016 release of the CMOs’ guidance, there has still not been any national public health campaign about alcohol-exposed pregnancies.)
National FASD has co-produced FASD: A Preferred UK Language Guide–we encourage anyone reporting on this issue to please avoid negative phrasing and to note there are new diagnostic terms in the UK. Fetal Alcohol Syndrome is no longer used, it is now called FASD with sentinel facial features.
National FASD has done research that shows the majority of NHS health boards, ICBs and Trusts are not taking action on NICE Quality Standard 204. Not Commissioned: Systemic confusion in NHS services for alcohol, pregnancy and FASD
National FASD has also produced a report that highlights best practice and actions that can be taken, even in the context of tight budgets. The Time is Now: The National Perspective on Ramping up FASD Prevention, Diagnosis and Support Services
