FASD
Foetal alcohol spectrum disorder (FASD) is a lifelong neurodevelopmental disability caused by prenatal alcohol exposure, which disrupts the development of the foetus’ brain and central nervous system. It is an umbrella term for a range of effects, including physical, mental and behavioural issues. There is no safe amount of alcohol consumption during pregnancy and FASD is 100% preventable.
FASD is a white-matter disorder of the brain. It causes midline and interconnectivity problems, affecting processing speed and the linking of information. It is the primary cause of the person’s presentation. According to Professor Raja Mukherjee, leading FASD expert and clinician, if alcohol damages the parts of the brain involved in social communication, the presentation is autism; if alcohol damages the parts of the brain involved in inhibitory control, the presentation is ADHD.
Read the NICE guidelines on FASD at https://www.nice.org.uk/guidance/qs204.
For detailed clinical and other information about FASD across the lifespan, watch the videos making up Raja and Neil’s FASD Book Club, at https://nationalfasd.org.uk/learn-more/resources/raja-and-neils-fasd-book-club/.
For research on FASD and the transition to adulthood, read Siann Gault et al. (2023) ‘Transitions into adulthood for people with fetal alcohol spectrum disorder: a scoping review of promising practices’, Children and Youth Services Review 155, available at https://www.sciencedirect.com/science/article/pii/S0190740923004358
The presentation of autism and ADHD in cases of FASD differ in a number of respects from classic presentations. There may be increased eye contact and social reciprocity.
People with FASD may or may not have the associated facial features, and may or may not have a learning disability. Language disorders are likely to be pervasive.
A diagnosis of FASD is given when the prenatal alcohol exposure has caused sufficient damage to cause a problem in functioning (i.e. it is possible to have experienced prenatal alcohol exposure that causes little damage and therefore has little negative effect on functioning).
The prevalence of FASD in the general population is estimated to be approximately 3-5%, or up to 1 in 20. Among care-experienced children and young people, it is significantly higher, perhaps 1 in 3, or even higher; some estimate prenatal alcohol exposure among this population as high as 75%. Adoption UK’s Adoption Barometer 2023 survey reported that 8% of adopted children had a formal diagnosis, and another 17% were suspected to have FASD. However, due to low awareness and lack of screening, these figures are likely to be an underestimate.
As the young person becomes older, the behavioural presentation is exacerbated at each developmental stage, as they are challenged or support is removed, increasingly exposing their difficulties and vulnerabilities. For most people, transitions are part of a progression. For those with FASD, it is important to identify their support needs and put appropriate support in place for the transition to be successful. If we don’t put the support in place, it all falls apart.
Parents often describe a situation in which the young person can understand things intellectually, but is unable to apply that knowledge to real-life situations and daily living skills. For this reason, simple skills for living instruction and training may not be effective, and the young person may continue to need support into adulthood.
The people with FASD who have the best outcomes are the ones who accept their strengths and weaknesses and accept the support that they need. The support should build on strengths and scaffold difficulties. The length of an intervention may be less relevant than the ability of the person to engage and the intervention’s outcomes.
There is no cure for FASD and no medication to treat it. It is only possible to manage the associated symptoms, such as depression or ADHD. Medication just to sedate someone to make them manageable, e.g. in a residential setting, is not ethical.
The cause of FASD is the mother’s alcohol consumption during pregnancy. The father’s alcohol consumption cannot cause FASD but it can cause a vulnerability in the foetus to the impact of alcohol.
Prevalence of secondary disabilities
Disability %
Psychiatric problem....................90
Disrupted school experience........60
Trouble with the law................... 60
Confinement..............................50
Inappropriate sexual behaviour....50
Alcohol/drug problems...............30
When FASD is followed by neglect and/or abuse, as in many cases of care-experienced children and young people, we see increased difficulties over cases of FASD or neglect/abuse alone.
If people aren’t diagnosed and supported early, this increases the possibility of secondary disabilities.
It is possible to ‘age’ a young person’s ability in different domains. The infographic shows the spiky profile of a typical 18-year-old with FASD, whose skill acquisition in different domains can vary significantly, leaving some of them with high support needs into adulthood.
Young people with FASD often experience challenges while transitioning to the expectations of adulthood. Research has demonstrated that appropriate supports in the transition to adulthood and throughout the lifespan may help mitigate these challenges.
Outcomes are improved by focusing on strengths, accepting difficulties and support. Planning for adulthood should start at around age 14. By 16 things should be in place for capacitous decisions. It is important to ensure that by 18 they are receptive to the necessary support.
Research highlights the importance of programmes and supports that demonstrate an understanding of FASD and emphasise relationship-building, the benefits of obtaining an FASD diagnosis, the notable gap in services for individuals who have transitioned to adulthood, and the importance of consistent advocates in the lives of young people with FASD, in particular to support the transition to adulthood.
Among the team at ATTACH-Manchester there is lived experience of FASD, the diagnostic process (very late diagnosis) and navigating systems for support. We are using this experience to create both therapeutic educational and social care provision for this cohort of young people.