What are fetal alcohol spectrum disorders and how can educators help combat the potentially devastating effects they can have on a child’s life?
Fetal alcohol spectrum disorders (FASD) is an educational term which 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 (British Medical Association, 2007). 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 in all areas of the curriculum and require a particular teaching approach and learning environment. Possible physical disabilities include facial differences (see figure 1), 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 (Mattson and Riley, 1997). The severity and type of fetal 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)
- postnatal 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 (Autti-Ramo, 2002) 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 by educators as in need of support. However, other children with FASD will have hidden needs, making the educator’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 presented with a curriculum or intervention which is only partially suitable for their needs. 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 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 are shown below.
- 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
- frontal lobe damage to the brain which is associated with FASD. This results in impaired executive functioning leading to deficits, such as 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. Executive functioning impacts on daily living skills.
- 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.
- difficulties acquiring appropriate social and emotional skills, which impact on relationships, friendships, and any activity which 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.
- the need to rely on external prompts from adults can result in low self esteem and frustration
- children and young people can begin to identify the differences between themselves and peers even in special school settings, again resulting in low self-esteem.
As stated above, 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.
Implications for learning
It is a necessity for these children and young people that there is extrinsic motivation to learn or complete skills and tasks such as life skills and hygiene routines and school based tasks, particularly in secondary aged children. This requires repetitive reminders and re-focussing from adults. The amount of time children spend engaged in learning tasks within the classroom in secondary-aged students can be as low as 40 per cent. In addition, social communication difficulties mean that inappropriate interactions with others can leave children with FASD vulnerable to bullying and other forms of abuse, or they may intimidate others with their over friendly or over-powering behaviour.
Challenges and opportunities for inclusion
In a typical classroom, children with FASD present educators with the following challenges: hyperactivity, short attention span, erratic mood swings, poor memory, lack of social skills, auditory/vocal processing difficulties, visual sequencing problems, sensory integration difficulties (particularly lack of coordination), poor retention of task instruction, and numeracy/mathematical difficulties (Carpenter, 2011).
Children and young people with FASD have particular strengths of a practical nature. Many are articulate and have engaging personalities. They enjoy being with other people. Although they have working/short-term memory difficulties, rote learning and long-term memory can be strengths. Many children with FASD have learning strengths around literacy and practical subjects, such as art, performing arts, sport and ICT, although they often have difficulties with comprehension.
These strengths will become the foundations on which to develop personalised curricula, to encourage and develop further strengths, and to build emotional resilience. However, the difficulties described above persist throughout life and impact on daily living skills, peer and family relationships and employment prospects. Children with FASD benefit from a particular learning environment and teaching strategies which are now evidence-based both internationally and in the UK (see Clarren, 2004; Kleinfeld and Westcott, 1993; Carpenter, 2011; Blackburn et al., 2012).
As discussed above, children with FASD can be hyperactive and inattentive, resulting in low levels of engagement with school-based tasks and activities. Often this can be associated with sensory processing difficulties and can be supported by a number of strategies (see boxed out section).
Children with FASD will benefit from consistency of language between home and school, emphasising the need for schools to collaborate closely with families to ensure children’s wellbeing and ability to predict outcomes resulting from their behaviour. Attention to friendships and peer relationships is important to improve children’s emotional resilience; nurture groups have been found to be particularly successful in this respect.
Inappropriate interaction with other (sometimes younger) children can result in police custody and some children may need one to one supervision to keep themselves and others safe. Extreme impulsivity may imply two to one adult supervision and ongoing risk assessment in lessons such as science where equipment has the potential for harm when the risks are not well understood by students.
Support into adulthood
Those with FASD will continue to need provision and support throughout their adult life, which ideally would include:
- ongoing multi-disciplinary assessment leading to appropriate and sensitive support packages
- a commitment to maximising appropriate levels of independence
- the provision of supported/sheltered living accommodation with access to assistance with daily living skills
- supported work and leisure opportunities.
Without appropriate diagnosis and effective and appropriate support and education, children with FASD will experience social and emotional vulnerability leaving them at risk from developing secondary disabilities. Educators are ideal advocates for children and families with FASD. It is crucial, therefore, that they familiarise themselves with the nature of the condition and understand the diverse and complex needs which are a feature of the spectrum of effects resulting from prenatal exposure to alcohol.
Symptoms of FASD and resulting behaviour:
- sensory processing difficulties
- emotional outbursts/aggression
- poor memory/organisation skills
- dysfunctional social skills (overfriendly/overpowering)
- information processing difficulties
- poor understanding and retention of task instruction
- difficulty with sequencing events
- difficulty with abstract concepts
- receptive language difficulties
- poor understanding of cause and effect.
Reducing behaviour issues in the classroom
By applying the following to the learning environment and teaching approaches, behaviour problems can be reduced:
- provide a calm ordered learning environment
- ensure frequent breaks with physical movement to aid sensory seeking and calming behaviour
- ensure predictability and routine to avoid anxiety
- support social and emotional development with social stories, scripting and role-play
- break instructions down into small steps
- provide visual support to reinforce auditory input
- demonstrate tasks and reinforce with concrete resources
- allow more processing and thinking time and expect to have to repeat instructions, tasks and learning objectives
- plan for strengths, which tend to be practical.
Carolyn Blackburn is a member of the early childhood research group at Birmingham City University. She was the project lead for projects investigating the educational implications of FASD in the UK and she is co-author, with Barry Carpenter and Jo Egerton, of the first UK text on the education of children and young people with FASD (see References).
Resources to assist educators with inquiry based reflective approaches to teaching, including observation and engagement focussed intervention tools, can be found at:
- Autti-Ramo, I. (2002) Fetal alcohol syndrome: a multifaceted condition, Developmental Medicine & Child Neurology, 44: 141–144.
- 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.
- Blackburn, C. (2010) Facing the Challenge and Shaping the Future for Primary and Secondary Aged Students with Fetal Alcohol Spectrum Disorders (FAS-eD Project). London: National Organisation on Fetal Alcohol Syndrome (UK).
- BMA (British Medical Association) (2007) Fetal Alcohol Spectrum Disorders: A Guide for Healthcare Professionals. London: British Medical Association.
- Carpenter, B. (2011) Pedagogically bereft! Improving learning outcomes for children with Fetal Alcohol Spectrum Disorders, British Journal of Special Education, 38 (1): 37-43.
- Carpenter, B., Egerton, J., Brooks, T., Cockbill, B., Fotheringham, J., and Rawson, H. (2011) The Complex Learning Difficulties and Disabilities Research Project: Developing Meaningful Pathways to Personalised Learning Final Report. London: Specialist Schools and Academies Trust (SSAT).
- Clarren, S.G.B. (2004) Teaching Students with Fetal Alcohol Spectrum Disorder: Building Strengths, Creating Hope. Edmonton, Canada: Alberta Learning.
- Jonsson, E., Dennett, L., and Littlejohn, G. (eds) (2009) Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan (Proceedings from an IHE Consensus Development Conference 2009). Alberta, Canada: Institute of Health Economics.
- Kleinfeld, J. and Wescott, S. (eds) (1993) Fantastic Antone Succeeds! Experiences in Educating Children with Fetal Alcohol Syndrome. Fairbanks: University of Alaska Press.
- Mattson, S.N. and Riley, E.P. (1997) Neurobehavioural and neuroanatomical effects of heavy prenatal exposure to alcohol, in Streissguth, A. and Kanter, J. (eds) The Challenge of Fetal Alcohol Symdrome Overcoming Secondary Disabilities. Seattle: University of Washington Press, pp. 3-14.
- Morleo, M., Woolfall, K., Dedman, D., Mukherjee, R., Bellis, M.A., and Cook, P. (2011) Underreporting of fetal alcohol spectrum disorders: an analysis of hospital episode statistics, BMC Pediatrics, 11 (14).
- Mattson, S.N. and Riley, E.P. (2011) The quest for a neurodevelopmental profile of heavy prenatal alcohol exposure, Alcohol Research and Health 34 (1): 51-55.