What is FASD?
FASD is a condition which can arise from being exposed to alcohol during pregnancy. Alcohol is one of the most damaging substances to a developing baby, which often surprises people.
Many assume that recreational drugs are more harmful. However, while drugs have their own effects, alcohol often does the most harm. There is no safe amount of alcohol to consume during pregnancy and no safe gestational time, and therefore, being entirely abstinent is the only way to completely negate the risk. Not all babies who are prenatally exposed to alcohol will develop FASD, but many do. While the risk is higher for those who are exposed to larger quantities of alcohol, recent research has established that even low-level alcohol exposure can result in neurodevelopmental effects.
Children with FASD can sometimes have sentinel facial features associated with alcohol exposure. While these features can facilitate diagnosis in children who may not have a well-documented history of alcohol exposure, they are otherwise not significant in the diagnostic process. Having sentinel facial features is rare – 90% of children with FASD do not have them.
FASD – the facts
FASD is surprisingly common – more common than ASD. It is estimated that 3-6% of the UK population have FASD, while roughly 1-2% are thought to have ASD. Some groups of children are more likely to have FASD, such as children in care and adopted children. Studies provide different figures in this respect, varying from 25% to as high as 70%, meeting the diagnostic threshold.
FASD is best understood as a syndrome or an umbrella diagnosis under which several co-occurring conditions are often observed. For example, roughly three quarters of children with FASD meet diagnostic criteria for ADHD. Likewise, around half of children with FASD also have ASD. Other associated problems include general learning disability, a spiky cognitive profile, executive functioning impairment, poor emotion regulation and behavioural problems, poor adaptive function, sensory processing disorder, tics, and difficulties with social relationships (with or without ASD).
Many children we see have been exposed to both alcohol and other substances during pregnancy. This is described as poly-substance exposure and can, in some cases, result in more significant neurodevelopmental impairments, so it is always helpful to have as much information as possible in this respect.
Assessment and diagnosis
It is very important that children thought to have FASD are provided with appropriate assessment and diagnosis, because this optimises the likelihood of receiving the right support as they grow older. Adolescents and young adults with FASD are very vulnerable, particularly if their difficulties are not fully understood.
FASD is a lifelong neurodevelopmental condition for which there is no cure but receiving support can make a considerable difference in quality of life. Some aspects of FASD can be treated medically, for example, co-occurring ADHD symptoms can be improved with ADHD medication in some children and young people.
While FASD presents differently in everyone, a child with FASD is likely to have several of the following difficulties or features:
- An uneven pattern of strengths and difficulties.
- General learning disabilities.
- Low academic attainment.
- Poor fine or gross motor skills.
- Sensory sensitivities.
- Hyperactive and impulsive behaviour.
- Behavioural problems.
- Poor emotion regulation.
- Difficulties with attention and concentration.
- Poor memory, particularly short-term (working) memory.
- Difficulties with speech and language, particularly with understanding language.
- Social immaturity or acting younger than their age.
- Difficulties with friendships.
- Being easily led and suggestible.
- Seemingly less independent than their chronological age would suggest.
- Poor reasoning and decision-making skills.
- Vision or hearing problems.
- Joint hypermobility.
- Problems with heart or kidneys.
- Short stature.
- Small eye openings, a thin upper lip, and undefined or ‘flat’ philtrum.
- Flat mid-face and under-developed ears.
How is FASD diagnosed?
For FASD to be diagnosed, there must be evidence of prenatal alcohol exposure or at least a strong suspicion of this. It is essential to rule out other possible causes of neurodevelopmental impairment first. This is done by requesting a genetic screen called a CGH microarray. Fragile X testing is also sometimes completed. These tests mean the most common genetic causes of learning disability and neurodevelopmental impairment can be excluded.
We do not conduct genetic testing at PCEA as we are not a medical clinic, so these would need to be accessed via a GP referral or through a child’s community paediatrician if they have one, either before or following assessment. We can provide further advice about this.
It is difficult to diagnose a child below the age of six unless they have very clear symptoms. This is because many of the challenges associated with FASD become more apparent from school age onwards.
FASD assessments in the UK should follow the NICE guidance, which is based upon the SIGN 156 Guidance. The assessments conducted at PCEA focus on assessing the neurodevelopmental and neuropsychological profile of FASD. This enables us to identify whether a child meets the diagnostic threshold according to SIGN 156 criteria.
What happens at the assessment?
Prior to the assessment, a video consultation is conducted with the child’s parents or carers to gather information about their developmental history, and the parents’ concerns. Evidence of prenatal alcohol exposure is also requested, either to be sent securely ahead of time or brought to the clinic. Any other relevant historical assessments, diagnoses, or reports are also requested for additional information.
With permission, the child’s school is contacted and asked to complete standardised questionnaires in addition to holding a telephone or video consultation to learn more about how they manage in the school environment.
The assessment is conducted at our clinic in Norwich, Norfolk. We have a large building with several clinic rooms and a waiting area. We have a friendly and welcoming admin team to put families at ease. Ahead of time, families will be told which clinician/clinicians they are seeing and whose pictures are available to prepare a child.
The assessment is usually conducted one-to-one with the child, while their parent or carer sits in the waiting area. We are very used to seeing children who may be anxious, and we will do everything we can to reassure them. If they need their parent or carer in the room initially, this can be accommodated. The assessment involves the use of standardised tools, which vary according to the child’s age and ability. The tools all measure different cognitive areas so that an overall picture can be formed.
After the assessment is completed, a debrief session with parents or carers is conducted to discuss how the child managed the session, and to provide an overall impression.
Where else can I read about FASD?
The best places to read about FASD are the National Organisation for FASD, and also FASD South West. It is also helpful to read the SIGN 156 Guidance.
You can also find further information in our white papers or our reading and resources list.
The full report is usually completed within 6-8 weeks of assessment, and following this, a further video consultation is offered to parents or carers to discuss the results and next steps.
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