Evidence-Based
Fetal Alcohol Spectrum Disorder

Understand. Recognise. Support.

FASD is one of the most common neurodevelopmental conditions in the UK, and it is often missed. Early recognition and the right strategies make a lifelong difference.

What is FASD?

🧠Definition
FASD is a lifelong neurodevelopmental condition caused by prenatal alcohol exposure. It affects brain structure and function, leading to challenges across cognition, behaviour, communication, and daily living. FASD is categorised into two presentations based on the presence or absence of sentinel facial features — both are equally significant diagnoses.
FASD with Sentinel Facial Features FASD without Sentinel Facial Features

Both presentations are equally valid diagnoses of FASD. The absence of facial features does not mean a milder condition — neurodevelopmental impairment can be equally significant in both.

Key Facts

📊Prevalence (UK)
SIGN estimates that about 3.2% of babies born in the UK are affected by FASD, and that up to 172,000 people in Scotland may be affected (SIGN). In a small study of three primary schools in Greater Manchester, 1.8% of children had FASD, or 3.6% when possible cases were included. None had been diagnosed before (McCarthy et al., 2021). FASD is often missed or misdiagnosed.
⚠️No Safe Amount
There is no known safe level, safe type, or safe time during pregnancy to drink alcohol. This is the advice of the UK Chief Medical Officers and is the basis of NICE QS204 Statement 1.
🤝Support, Not Blame
Many people drink alcohol before they know they are pregnant, and many were never told the risks. FASD is nobody’s fault. What matters is recognising it early and getting the right support for the child and family.

Diagnostic Classifications

📚 SIGN 156 (Scottish Intercollegiate Guidelines Network, 2019, revalidated 2022). SIGN currently notes that some recommendations may be out of date. NICE QS204 (2022) is a quality standard for England. SNOMED CT codes implemented 2024.
FASD with Sentinel Facial Features
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SNOMED CT: 1894471000000108

Per SIGN 156: All three sentinel facial features must be present. These are highly specific to prenatal alcohol exposure and, when all three are present, confirmation of alcohol exposure through other means is not required.

The Three Sentinel Facial Features:

  • Smooth philtrum — ranked 4 or 5 on the University of Washington Lip-Philtrum Guide
  • Thin vermillion border (upper lip) — ranked 4 or 5 on the Lip-Philtrum Guide
  • Short palpebral fissures — palpebral fissure length 2 or more standard deviations below the mean

Plus:

  • Prenatal alcohol exposure confirmed or unknown (not when exposure is confirmed absent)
  • Severe impairment in 3 or more of the 10 areas of assessment, or microcephaly in infants and young children

Note: Features such as flat midface, low nasal bridge, or short nose are associated features, not sentinel features. Only the three above are sentinel.

FASD without Sentinel Facial Features
▼

SNOMED CT: 1894461000000101

This is the most common presentation. National FASD estimates fewer than 1 in 10 people with FASD have all three sentinel facial features. Facial features are absent, or fewer than three are present.

Diagnostic Criteria (both required):

  • Confirmed prenatal alcohol exposure — documented evidence of alcohol use in this pregnancy is required where facial features are absent (SIGN 156)
  • Pervasive brain dysfunction — severe impairment in 3 or more of the 10 SIGN 156 neurodevelopmental domains (see below)

There is no 'mild' FASD — neurodevelopmental impairment in this presentation can be equally or more severe than in the facial-features presentation.

The 10 SIGN 156 Neurodevelopmental Domains
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Per SIGN 156: Severe impairment in 3 or more of these domains = pervasive brain dysfunction. Each domain must be assessed by a qualified professional using standardised tools. See the full SIGN 156 criteria for each area.

  • Brain structure / Neuroanatomy / Neurophysiology
  • Motor skills (fine and gross motor, coordination)
  • Cognition (intellectual ability, processing)
  • Language (receptive and expressive)
  • Academic achievement
  • Memory (overall, verbal and visual memory)
  • Attention (sustained and selective attention)
  • Executive function (including working memory, impulse control, hyperactivity, planning and flexibility)
  • Affect regulation (diagnosed mood and anxiety disorders)
  • Adaptive behaviour, social skills, and social communication
At Increased Risk of FASD
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SNOMED CT: 2078801000000102

SIGN 156 and NICE QS204 recognise a third category for children who do not yet meet full diagnostic criteria but remain at increased risk:

  • Confirmed PAE with some signs of neurodevelopmental difficulty, but the assessment cannot yet meet full criteria (for example, the child is too young or the assessment is incomplete)
  • All three sentinel facial features present, without yet meeting the criteria for 3 areas of assessment or microcephaly. Never used when exposure is confirmed absent
  • Should receive monitoring, support, and re-assessment as the child develops

NICE QS204 states: support should not wait for a formal diagnosis — children at increased risk should receive early intervention.

Brain & Neurodevelopmental Signs
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  • Memory difficulties (especially short-term and working memory)
  • Poor cause-and-effect reasoning
  • Difficulty with abstract concepts
  • Impulse control challenges
  • Attention and concentration difficulties
  • Language delays or processing difficulties
  • Inconsistent performance — 'good days and bad days'
Behavioural Signs
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  • Difficulty understanding consequences
  • Emotional dysregulation / meltdowns
  • Confabulation (apparent lying — neurological, not intentional)
  • Difficulty with transitions and change
  • Social naivety / over-friendliness with strangers
  • Sleep disturbances
Physical Signs
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  • Growth restriction (height, weight, or head circumference)
  • Microcephaly (OFC ≤ 3rd centile) — particularly significant in infants
  • Sensory processing differences (over or under-responsive)
  • Poor fine and gross motor coordination
  • Feeding difficulties in infancy
  • Hearing or vision problems

Pregnant or Planning a Pregnancy?

🤰Alcohol and pregnancy
The UK Chief Medical Officers advise that the safest approach is not to drink alcohol at all if you are pregnant or trying to get pregnant. National FASD's alcohol and pregnancy information explains why.

If you drank before you knew you were pregnant, try not to panic. Stopping now still helps your baby, and you can talk to your GP, midwife or health visitor. Read National FASD's non-judgemental guide. If you are dependent on alcohol, speak to a healthcare professional before stopping.