Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.” (Harding, Flannigan & McFarlane, 2019).
Due to a multitude of factors such as genetics, how much, and how often a person was exposed to alcohol prenatally, there is no single pattern or neuropsychological presentation that is specific to all individuals with FASD (Cook et al., 2016 Appendix, Canadian Guidelines). Each person with FASD has a unique presentation, with their own strengths and weaknesses as a result.
Although this is a life-long condition and comes with a variety of strengths and weaknesses, providing support and strategies can help improve quality of life.
To have a diagnosis of FASD, there should be a history or a strong suspicion of alcohol exposure during pregnancy. We also ask for genetic tests to be completed to rule out other disorders or factors that may contribute to the symptoms the person is exhibiting.
Due to the nature of the assessments used in the clinic, the individual being assessed must be over the age of 6 years old.
To diagnose FASD in the UK, we use the NICE guidance, which has adopted the SIGN-156 (Scottish) guidance.
There are four key areas that are looked at, to be diagnosed with FASD. These are:
1. Central Nervous System (CNS) domains (also referred to as brain domains)
We assess a range of brain domains in the clinic. The person we assess must present with severe impairment in at least 3 of the domains to meet diagnostic criteria. See the ‘What is a Fetal Alcohol Spectrum Disorder?’ booklet for more information on the different brain domains.
2. Physical findings
Some people with FASD have specific facial characteristics, or growth deficiencies. We typically assess the sentinel facial features of FASD in the clinic using both 2D and 3D photographic software, and take height, weight, and head circumference measurements (head circumference is used to measure brain structure, which is a CNS domain). We also gather information about the client’s growth history where possible. However, a diagnosis of FASD can be made without the presence of specific physical findings. See the ‘What is a Fetal Alcohol Spectrum Disorder?’ booklet for more information.
3. Alcohol exposure
We assess the likelihood of the presentation being explained by prenatal alcohol exposure. This involves gathering information to evidence the evidence of risk of prenatal maternal alcohol consumption.
4. Other possible causes
We also assess whether aspects of the presentation could be explained by causes other than maternal alcohol consumption, such as genetic causes, exposure to other substances, or significant post-natal trauma or attachment difficulties.
The following brain domains can be considered: Brain structure, motor skills, cognition, Language, Academic achievement, Memory, Attention, Executive function (including impulse control and hyperactivity), and Adaptive Behaviour, Social Skills, or Social Communication.
Our assessment aims to not only ascertain whether an individual has a diagnosis of FASD, but to identify strengths and weaknesses that a person has and recommend ways to utilise the strengths and support areas which may be more challenging.
The Assessment Process
Before the assessment:
The assessment takes place across 2 separate days. Before the first assessment, a letter will be sent including appointment details and some preliminary questionnaires. Genetics will also need to be underway or completed. Referrals for genetic testing need to be requested locally, such as via the GP.
The first day, the accompanying adult and the individual being assessed will come to our base, Gatton Place, Redhill. The day will start at approximately 9:30am at our base, Gatton Place, and finish at approximately 4:30pm. Here are pictures of some of the different places you will go throughout the day:
There will be opportunities for breaks throughout the day. The timings are approximate and can be adjusted to suit the needs of the individual as required. The day is split into 3 sessions, with breaks in-between each session:
Session 1: Generic Assessment for Fetal Alcohol Spectrum Disorder (1 1/2 hours)
The day will start with one of our FASD Specialist Clinicians. This will involve asking the individual being assessed about their strengths and difficulties, as well as taking some physical measurements and, with consent, photographs to assess facial features.
Session 2: Psychology Assessment of Cognitive and Executive Functioning (3 hours)
The next session will be with a Clinical Psychologist and sometimes a Trainee Clinical Psychologist. This will include doing some activities at a table. The activities include looking at pictures and puzzles, arranging blocks, paper and pen-based activities and answering questions. This will help us build a picture of their cognitive function and what areas are strengths and what areas they may struggle with.
Session 3: Speech and Language Assessment (2 hours)
This will be with a Speech and Language Therapist. This meeting will include listening and talking, with pictures to look at for many of the activities. This aims to look at how the individual being assessed can use and understand different aspects of language.
You will be given some more questionnaires for yourself (or an adult who knows the individual best) to fill out, as well as the individual’s school (if appropriate). These questionnaires will give a more in depth understanding of the individual’s strengths and challenges. Any questionnaires given at the first appointment are completed and sent back within 2 weeks.
The second appointment takes place online (via NHS Attend Anywhere), or in person if requested. The meeting is an interview with an accompanying adult(s) who knows the individual well, and preferably someone who is familiar with their background history. The second appointment will be arranged approximately 12 weeks after the first appointment. This allows time for the assessments and questionnaires to be returned and scored, and for a multi-disciplinary feedback meeting to take place. The second day’s appointment can last up to 7 hours, with breaks throughout.
During the second appointment, results of the first day of assessment and questionnaire data will be fed back. Background information and prenatal alcohol consumption will also be discussed. A developmental history and social communication interview will be carried out, as well as an ADHD semi-structured Interview.
Once a diagnosis has been made, we can offer a range of care management advice as well as specialist clinics to deliver interventions that help people improve their wellbeing.
The life-long implication of Fetal Alcohol Spectrum Disorder can include physical disabilities, mental illness, and behaviour problems. As part of the presentation, individuals may also have learning disabilities, intellectual impairment, issues understanding information and assessing risk, attention problems, hyperactivity, and aggression.
Care Management Plan
The purpose of the clinic is not to replace local services. Rather, as well as carrying out an FASD assessment, the clinic process is designed to identify underlying strengths and difficulties to inform recommendations for the care plan, for local teams to implement in relation to appropriate support, both now and in the future.
There is limited experience and understanding of FASD in the UK and by completing our holistic assessments we are able to give evidence-based recommendations.
We are currently one of the few services in the UK to confidently diagnose Fetal Alcohol Spectrum Disorder, as well as other neurodevelopmental conditions such as Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, Intellectual Disability, and Language Disorder.
Fetal Alcohol Spectrum Disorder
We have seen over 250 complex cases of FASD and so have the experience and knowledge to recognise the subtle deficits seen with this condition. This allows us to make the diagnosis of FASD With or Without Sentinel Facial Features, and if this is not possible, we will advise what the appropriate diagnostic formulation should be.
We diagnose FASD by using a multidisciplinary assessment to identify, understand and evaluate factors such as neglect, prematurity, genetic disorders, pregnancy related issues and the use of drugs during pregnancy. Our assessments provide indicators of verbal function, confabulation (disturbance of memory) and medium-term memory which may not be established in other testing.
Other neurodevelopmental and genetic conditions
We are experienced at recognising, diagnosing, and understanding the causes of other complex neurodevelopmental and genetic conditions including Autism Spectrum Disorders (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Intellectual Disability, Language Disorder and Fragile X syndrome.”
ASD and ADHD occur frequently in those exposed to prenatal alcohol and therefore these form a core part of our assessment. No single approach is used; we evaluate observational and historical information as well as screening tests.
We have published research in these areas, particularly on the relationship between FASD and autism.
Therapy and repeat assessments
We do not provide therapy after assessment, local services are better placed to implement our recommendations.
Situations have occurred where individuals have been assessed at a young age and a re-evaluation has been requested but in general most people are seen only once.