Fetal alcohol spectrum disorder is frequently undiagnosed, yet can have a huge long-term impact when not spotted early. Journalist Claire Moulds looks at why this stigmatised condition needs to be in the spotlight.
Alifelong condition requiring ongoing support, intervention and management strategies, fetal alcohol spectrum disorder (FASD) can blight a person’s life from birth. For many of those families affected, a lack of clinical awareness and training, and a healthcare system not designed to accommodate the condition, has meant an ongoing battle for recognition, assessment and support. Yet the right level of support can be transformative.
What exactly is FASD?
‘FASD is an umbrella terminology that describes the effect of alcohol on the developing fetus,’ explains Dr Inyang Takon, consultant neurodevelopmental paediatrician at the East and North Hertfordshire NHS Trust, who takes a special interest in FASD.
‘Prenatal alcohol exposure can impact on the child’s physical development and central nervous system, which in turn can result in neurodevelopmental and behavioural difficulties.’
If a woman drinks during pregnancy, alcohol passes in her bloodstream through the placenta to the fetus. As the fetus’s liver is immature, it cannot metabolise the alcohol it has been exposed to and, as alcohol is a teratogen – substances that may produce physical or functional defects in the human embryo or fetus after the pregnant woman is exposed – this can cause abnormalities and defects.
Crucially, FASD is a spectrum, so each person is affected differently, and more than 400 conditions can co-occur, affecting nearly every system of the body (Popova et al, 2016). These include the following:
- Central nervous system
Often people with FASD have multiple diagnoses, but it’s crucial to understand that FASD is the overarching diagnosis.
Can it be prevented?
FASD is completely preventable if a woman doesn’t consume alcohol during pregnancy. As many people don’t realise they’re pregnant for a number of weeks, current advice from the UK chief medical officer is that those trying to conceive should also abstain.
Inyang says: ‘It’s completely unpredictable how much alcohol results in the fetus having FASD or to what degree. That’s why the message “no alcohol = no FASD” is key.’
‘We need to rethink who’s most at risk,’ adds Sandy Butcher, chief executive of the National Organisation for FASD. ‘It surprises people to learn that studies show that educated, white women drink more often in pregnancy. They think that the odd glass of wine is okay, and we need to challenge that belief.’
Partners can also play a key role in supporting an alcohol-free pregnancy by abstaining or reducing their own intake.
‘Knowing a child had prenatal exposure to alcohol is key to a FASD diagnosis and it’s therefore vital that those working with families know how to create a safe, non-judgmental environment where mums can be open about, and find support for, their drinking habits during pregnancy,’ says Sandy.
How FASD presents
‘There are no unique symptoms for FASD. Rather we have a pattern of abnormalities that are commonly seen in children with prenatal alcohol exposure,’ says Inyang, whose work includes carrying out diagnostic assessments for children with suspected FASD, providing regular training on the condition and acting as one of the specialist experts on the NICE Quality Standard on FASD Committee.
‘The symptoms also vary across different age groups,’ she says. ‘Newborns might have a low birthweight, small head size, facial abnormalities [in less than 10% of babies with FASD] and difficulties with feeding and sleeping. In addition, infants and toddlers might have poor growth and be delayed in achieving developmental milestones, such as walking and talking.’
The SIGN 156 clinical guideline categorises the neurological abnormalities into 10 key areas to help with the assessment and identification of children with FASD (SIGN, 2019).
- Motor skills
- Brain structure and functioning
- Academic achievement
- Executive function, including impulse control and hyperactivity
- Affect regulation
- Adaptive behaviour, social skills or social communication.
Inyang says: ‘The neurological impact may not be obvious until the child is of school age. Some will have fine motor difficulties and struggle with feeding, dressing, writing and general day-to-day activities. Poor balance and clumsiness might also be an issue. As the child grows older, many have problems with attention, concentration, hyperactivity and impulsivity.’
Sandy adds: ‘FASD can become more apparent as children age and the gap with their peers widens. It is sometimes, though, diagnosed in babies and toddlers, especially if they have the three sentinel facial features – short palpebral fissures [a shortened distance between the inner and outer corners of each eye], smooth philtrum [diminished or absent ridges between the upper lip and nose] and thin upper lip – although these affect less than 10% of the FASD population.’
How is it diagnosed?
A comprehensive FASD assessment takes a developmental history from the child’s carer, and carries out physical examination, facial assessment, and neurocognitive assessments – including screening for attention difficulties and social communication concerns. It is carried out by several professionals such as clinical or educational psychologists, speech and language therapists and occupational therapists. Information from the school about the child’s learning profile and behavioural differences is also considered when doing the assessment.
Inyang explains: ‘Unfortunately, most areas in the UK do not have pathways for FASD so parents struggle to have their child seen for a comprehensive assessment. Many children have been given several diagnostic labels from regular outpatient developmental review, which do not reflect the extent of their difficulties, hence they are not able to access appropriate interventions.
a diagnosis of FASD transforms your understanding of your child and the challenges they face
‘Referrals for FASD are rejected by a lot of CAMHS [child and adolescent mental health services] and paediatric services. Children with neurodevelopmental difficulties (some of whom may have FASD) may secure development assessments but these won’t include the additional assessments required to conclude on a FASD diagnosis.’
It’s one of the key issues which the new NICE quality standard, based on the SIGN 156 clinical guideline, aims to address. Importance is placed on considering prenatal alcohol exposure when children and young people present with developmental problems to ensure that, where required, a comprehensive FASD assessment is carried out. There’s also significant emphasis on the need for additional FASD training for key healthcare professionals and the need to establish multidisciplinary teams and develop referral pathways (NICE, 2022).
‘While we welcome the recognition of the condition that the new NICE quality standard brings, and the steps it and the Department of Health and Social Care needs assessment outline to improve prevention, diagnosis and long-term care, these changes will take years to work through the system,’ says Sandy. ‘In the meantime, diagnosis in the UK remains a postcode lottery and the most worrying aspect is that we know that the earlier a diagnosis is made, and the sooner support can be put in place, the better the outcome.’
FASD parenting strategies you can share with families
While parents often learn these by trial and error in time, it can be empowering to learn how they can be proactive from the start while waiting for a diagnosis
- Routine and structure are key so the child always knows what’s coming next
- Be consistent with them
- Use clear and simple language
- Repetition is key, especially with new information
- If you need them to focus, remove distractions
- Break tasks down into smaller steps
- Provide more supervision than other peers/siblings in the same age group
- Have a calm space they can go when they feel overwhelmed; this needs to be seen as a positive, not a punishment
- Use positive reinforcement.
What can you do?
Inyang advises: ‘If there isn’t a specific FASD pathway in your area you can:
- Write to the local commissioning team about the impact of not having a diagnosis on the outcome for children with FASD. Express the importance of establishing an assesment pathway. Request funding to refer children to the tertiary or specialist assessment service
- Liaise with the child’s GP to also advocate for referral to an FASD assessment service
- Set up multiprofessional meetings with the child’s clinician, social care (if relevant) and school to discuss the child’s needs and formulate an action plan on advocating for an FASD assessment
- Approach the looked after service team/ adoption services team to advocate for a referral to the tertiary FASD centre, if no local or regional service is available.’
‘It’s important to keep pushing,’ adds Sandy. ‘Many children, like my own son, are diagnosed with one condition, such as ADHD, and then there’s a sense of ‘job done’ amongst the team. Having a diagnosis of FASD, though, transforms your understanding of your child and the challenges they face and is essential to securing the right support.’
Inyang says: ‘Sadly, there are many healthcare professionals who are sceptical about FASD, or who lack awareness and training, so you may find yourself the FASD champion in your area. If so, consider running a local campaign or linking up with midwives, paediatricians and nurses to form a steering group to develop pathways for local assessment.’
‘We’ve seen time and time again the impact that one or two forward-looking individuals can have on helping ramp up local services,’ says Sandy. ‘That’s why we’re working with colleagues in government and experts to explore setting up a multidisciplinary community of practice to overcome the sense of isolation that practitioners too often feel.’
It’s particularly important that professionals, including community practitioners, who support at-risk
groups have the correct training. Such groups include looked after, care-experienced and adopted children, those known to mental health services and those involved in the criminal justice system (National Organisation for FASD, 2022).
FASD is a lifelong condition, requiring lifelong support, and this needs to start as early as possible to help prevent/reduce outcomes associated with the condition including:
- Mental health issues
- Disrupted school experience
- Trouble with the law
- Alcohol/drug issues
- Inappropriate sexual behaviour
- Difficulty sustaining employment
- Problems living independently (Centers for Disease Control and Prevention, 2020).
‘The support put in place depends on each child’s particular difficulties and might include speech therapists, occupational therapists and physiotherapists,’ says Inyang. ‘An education, health and care plan, or equivalent, should also ensure they have their learning needs met.’
Teachers also need training on how to support pupils with FASD. While many have normal IQs, they may have a patchy learning profile, experiencing difficulties with subjects like maths, but proving capable in other areas. Children with FASD also experience sensory difficulties and environmental adjustments may be required to help a child perform to the best of their ability.
there are many healthcare professionals who are sceptical about FASD, or who lack awareness and training
Any management plan should also include non-academic activities, address specific impairments while also building on the child’s strengths, support the transition to adulthood, and address future learning and employment needs.
‘Most importantly,’ says Inyang, ‘young people with FASD can live successful, healthy and happy lives with the right level of support.’
- The National Organisation for FASD provides a range of information, resources and training for those living with FASD and everyone involved in their care nationalfasd.org.uk
- It has also published FASD: preferred UK language guide to avoid stigmatising or blaming language bit.ly/FASD_language_guide
- Me & My FASD is a website to help children and young people with FASD to better understand and live alongside their diagnosis fasd.me
- The FASD UK Alliance is a coalition of independent groups across the UK who provide local, regional and national support fasd-uk.net
Centers for Disease Control and Prevention. (2020) FASDs: secondary conditions. See: www.cdc.gov/ncbddd/fasd/secondary-conditions.html (accessed 9 August 2022).
McCarthy R, Mukherjee RAS,Fleming KM et al. (2021) Prevalence of fetal alcohol spectrum disorder in Greater Manchester, UK: An active case ascertainment study. Alcoholism: Clinical and Experimental Research 45(11): 2271-281.
National Organisation for FASD. (2022) The time is now. See: https://nationalfasd.org.uk/wp-content/uploads/2022/03/National-FASD-RT-Report-v004-INTERACTIVE-singles-2.pdf (accessed 9 August 2022).
National Organisation for FASD.(2020) FASD: preferred UK language guide. See: https://nationalfasd.org.uk/wp-content/uploads/2020/11/Seashell_NationalFASD_FASDLanguageGuide.pdf (accessed 9 August 2022).
NICE. (2022) Fetal alcohol spectrum disorder. See: nice.org.uk/guidance/qs204 (accessed 9 August 2022).
Popova S, Lange S, Probst C et al. (2017) Estimation of national, regional, and global prevalence of alcohol use during pregnancy and fetal alcohol syndrome: a systematic review and meta-analysis. The Lancet Global Health 5(3): e290-99.
Popova S, Lange S, Shield K et al. (2016) Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. Lancet 387(10022): 978–87.
Scottish Intercollegiate Guidelines Network (SIGN). (2019) Children and young people exposed prenatally to alcohol. See: www.sign.ac.uk/media/1092/sign156.pdf (accessed 9 August 2022).
Image credit | Justin-Metz