Prenatal exposure to alcohol is regarded by many experts as the leading preventable cause of birth defects and developmental disabilities. Here, Dr Carolyn Blackburn, describes the spectrum of conditions linked to it and the implications for those working with affected childrenFetal Alcohol Spectrum Disorders (FASD) is an educational term that recognises the range of effects resulting from maternal alcohol consumption. The medical diagnoses within the spectrum include the most recognised part of the spectrum, Fetal Alcohol Syndrome (FAS), as well as problems with behaviour and the brain with no obvious external signs, when Alcohol Related Neurodevelopmental Disorders (ARND) may be diagnosed. Also included in the spectrum are Alcohol Related Birth Defects (ARBD) and Partial Fetal Alcohol Syndrome (pFAS).
Prenatal exposure to alcohol can lead to intellectual and developmental delays and differences which impact on children’s learning and development throughout life. Possible physical disabilities include facial differences, growth deficiencies, major organ damage, and skeletal damage, as well as hearing and vision impairments. Damage to the brain (central nervous system damage) results in developmental disabilities, which can include general learning difficulties, communication delays/disorders, behavioural, social and emotional difficulties, and sensory difficulties. The severity and type of foetal damage caused by maternal alcohol use depends on a variety of factors including:
- Level and duration of drinking.
- Pattern of drinking.
- Timing of alcohol used (stage of fetal development).
- Blood alcohol level.
- Genetic influences.
- Maternal age and health – physiological effects.
- Use of other teratogens (poly-substance use and abuse).
- Post-natal factors (such as caregiver/child interactions and home environment).
There is no period during pregnancy at which alcohol can be drunk without risk to the developing foetus, although there are sensitive periods for particular organs. The central nervous system (brain and spinal cord) are vulnerable throughout pregnancy.
Diagnosis and prevalence
Children and young people with FASD may account for as many as one in 100 children with difficulties ranging from mild to profound. This means that some children with FASD will have needs that are evident at birth, easily diagnosed and recognisable as being in need of support. However, other children with FASD will have hidden needs, making caregiver’s role more challenging. In addition, under-diagnosis (sometimes referred to as misdiagnosis), when conditions such as autistic spectrum disorder or ADHD are diagnosed instead of FASD, can mean that children are misunderstood.
In some cases, children are misunderstood and labelled as wilful, non-compliant and oppositional. It is not uncommon for children to be diagnosed with Oppositional Defiant Disorder (ODD) as a result of this misunderstanding, when in fact children lack either the ability to understand instructions and requests or remember them for sufficiently long periods to complete them.
Implications for children and young people’s learning and development
The impact of FASD on children’s development changes over time as children mature. If FASD is not recognised in early childhood, difficulties for children increase as they progress through the education system, resulting in so-called secondary disabilities such as poor mental health, disrupted school and ultimately criminal activity. Primary difficulties include:
- Significant delays in achieving developmental milestones such as toileting and hygiene skills, in some cases beyond the primary years.
- Medical and health related difficulties, including organ damage, poor sleep patterns, eating and dietary difficulties, small stature, vision and hearing impairments,
- Understanding cause and effect.
- Speech language and communication delays/disorders including verbosity, poor understanding, poor social cognition and communication skills and a difficulty using sophisticated language in social contexts.
- Cognitive difficulties, including poor short-term memory, and poor concentration.
- Difficulties in understanding mathematical concepts, such as time, and understanding money.
- Impaired ability to organise, plan, understand consequences, maintain and shift attention, and process and memorise data. This has an impact on independence in a range of situations.
- Behavioural difficulties, including hyperactivity, inattention, aggression, obsessions with people and objects, and agitation, can cause anxiety and frustration for children and young people as well as parents and educators. These difficulties, whilst often seen as behavioural issues, can also be related to sensory processing disorders requiring occupational therapy input.
Social and emotional difficulties:
- Difficulties acquiring appropriate social and emotional skills, which impact on relationships, friendships, and any activity that requires an understanding of the state of mind of others and predicting how this might affect their actions.
- Understanding boundaries. Children and young people can be frustrated by their own behaviour, but seemingly unable to control it, leading to challenges in self-esteem and peer relationships.
Secondary disabilities, such as mental health problems, disrupted school experience, trouble with the law, confinement, inappropriate sexual behaviour, problems with independent living and employment can result from a lack of identification and support when children are at primary age.
Case study: Jade – aged 13
Jade (13) is diagnosed with FASD and has strong expressive communication and language skills which mask poor social-emotional and communication skills as shown in Figure 1 below:
Jade attends an Autistic Spectrum Condition (ASC) unit attached to a mainstream secondary school. Jade is a keen learner, when she is confident she will be able to complete tasks. She enjoys school, in particular she likes public speaking, drama, French, history, literacy, dance and gymnastics. This enthusiasm is coupled with extreme impulsivity, hyperactivity, and a propensity to become over stimulated by busy, noisy, tactile environments (due to a sensory processing disorder).
This has particular implications for practical lessons such as science, food technology and physical education, where close supervision is required to ensure her safety and the safety of other students and staff. For example, in science lessons she can easily become overwhelmed by equipment such as Bunsen burners, bright liquids and noisy experiments. When she is over stimulated, she may pick up or touch equipment (Bunsen burners, ovens, chemicals) and move around the room with them before a member of staff can react. When in noisy changing-rooms, over-stimulation can lead to her climbing on top of equipment such as lockers. This can be interpreted by uninformed staff as a behavioural issue and result in sanctions rather than understanding.
It has been possible to include this child in a mainstream secondary setting and provide access to the national curriculum through a combination of careful and thorough risk assessments, adult support and scaffolding, personalised teaching and learning and partnership with parents. For example:
- Before practical sessions such as food technology or science take place, the science teacher or ASC unit teacher (accompanied by a teaching assistant) will walk and talk the student through the equipment, providing her with clear demonstrations and explanations of the safe use of equipment. She is then in a position to attend a lesson alongside her peers armed with a basic understanding of the principles and expectations. This will always be supported by at least 1:1 and sometimes 2:1 adult supervision.
- The student has a visual timetable located in the ASC which she looks at each morning on arrival at the unit.
- A smaller version of the timetable is copied into her individual planner so that she can view it during lessons as necessary.
- Teaching assistants monitor her anxiety and arousal level throughout the day through discussions with her and liaise with her and each other, as well as the ASC unit teacher about those lessons where more support may be necessary. They can then discuss the nature of support necessary to ameliorate the effects of her sensory processing difficulties as far as possible.
- The ASC unit teacher (and school SENCo when appropriate) corresponds daily with parents by email regarding issues arising.
- In addition, the student is provided with access to occupational therapy and music therapy to address sensory processing and social and emotional difficulties, combining a therapeutic approach with a differentiated national curriculum. These measures ensure that this student is able to access the national curriculum in a mainstream educational setting alongside her peers.
Supporting children with FASD
There are a number of ways that educators can support children and young people with FASD.
- Early diagnosis is important, but diagnosis at any point will ensure that children receive the best support in school and throughout life. A referral to a geneticist, paediatrician or specialist FASD consultant will be necessary for this. Following diagnosis children may need support from range of professionals including speech and language therapists, occupational therapists, Child and Adolescent Mental Health Services (CAMHS), play therapists and other medical professionals.
- Work closely with families to ensure that children with FASD receive consistent messages about boundaries and rules. This reduces the likelihood of confusion and unpredictability about acceptable behaviour.
- Provide consistency and predictability in whole school and classroom routines to avoid children becoming overwhelmed and frustrated when things change suddenly without explanation or children have too much unstructured time, which can cause anxiety.
- Provide guidance about appropriate social interactions with other children and expect to have to repeat the guidance periodically.
- Be realistic about expectations in terms of behaviour and achievement.
- Support social and emotional development with social stories, scripting and role-play, especially in relation to safety considerations, e.g. road safety.
- Break instructions and requests down into small manageable steps.
- Provide visual support to reinforce auditory instructions and requests (photographs, pictures, symbols).
- You may have to demonstrate tasks and instructions and reinforce with concrete resources if you are asking children to do something new.
- Allow children plenty of time to process any requests, questions or instructions and provide you with an answer.
- Provide plenty of opportunities for physical activity and involvement in hobbies. Children and young people with FASD tend to be very sociable and have strong practical skills such as art and design, amateur dramatics, gardening, sport.
- Expect children with FASD to be functioning at approximately half their chronological age and modify your expectations accordingly.
Blackburn, C., Carpenter, B. and Egerton, J. (2012) Educating Children and Young People with Fetal Alcohol Spectrum Disorders, Constructing Personalised Pathways to Learning. London: Routledge
For help and guidance contact the following organisations:
European Birth Mother Network
FAS Aware UK
FASD Network UK
National Clinic for FASD
National Organisation for Fetal Alcohol Spectrum-Australia
National Organization on Fetal Alcohol Syndrome-USA
European FASD Alliance
Too young to drink
Carpenter, B., Blackburn, C. and Egerton, J. (2013) FASD: Interdisciplinary Perspectives. London: Routledge
Dorris, M. (1989) The Broken Cord: A Family’s Ongoing Struggle With Fetal Alcohol Syndrome. Harper Collins
The European FASD Alliance
The European FASD Alliance was founded in February 2011 to meet the growing need for European professionals and NGOs concerned with FASD to share ideas and work together. It is a non-profit international organisation registered in Sweden.
In September 2016 the Alliance will hold its international conference in London. For more information please visit its website here.