Educating Children and Young People with Fetal Alcohol Spectrum Disorders

Constructing Personalised Pathways to Learning

Carolyn Blackburn, Barry Carpenter, Jo Egerton

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136303319
• Edition: 1
• Topic: Bildung
• Subtopic: Bildung Allgemein

The range of learning difficulties associated with children who have fetal alcohol spectrum disorders (FASDs) has been highlighted as an emerging but little understood area of Special Educational Needs.

This engaging, timely, and highly practical book will raise awareness about FASDs and their associated difficulties across the entire education workforce. It provides a range of specialist, practical tried-and-tested teaching and learning strategies, from which teachers and support staff may construct personalised learning plans for students with FASDs, and will help improve outcomes for all their children. It also:

• explains the impact that FASDs can have on the child's brain;
• discusses the overlapping and co-existing disorders, such as ADHD and autism spectrum disorders;
• shows how to support and empower teachers;
• provides ready-to-use teaching resources and strategies that can be used directly in the classroom.

Informed by the very latest research and written by leading experts in the field, Educating Children and Young People with Fetal Alcohol Spectrum Disorders will prove invaluable for experienced teachers and teaching assistants who are engaging in Continuing Professional Development, as well as newly qualified and training Initial Teacher Training students.

Chapter 1

Introduction

Fetal alcohol spectrum disorders (FASDs) comprise a broad spectrum of completely preventable intellectual and developmental deficits in individuals resulting from maternal alcohol consumption during pregnancy. FASDs include a range of physical and intellectual disabilities (BMA, 2007). 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, and behavioural, social and emotional, and sensory difficulties (Jones and Smith, 1973; Stratton et al., 1996; Matson and Riley, 1997). These difficulties are summarised by the honesty of CJ, a young adult with an FASD:

I have trouble with some stuff, like maths, spelling, left and right and memory. I try to get good grades so that I can be like smart people, but when I get good grades, they [other young adults] call me a cheater, so I can’t win. I want to be like other adults but I can’t be like other adults because I can’t take the bus and I don’t want to drive and I get worried a lot . . . more than other people . . . it’s frustrating.

(NOFAS-UK, 2010a)

Children and young people (CYP) with FASDs have particular strengths of a practical nature, but the difficulties described above persist throughout life (BMA, 2007) and impact on daily living skills, peer and family relationships, and employment prospects (Blackburn, 2010), and require a particular learning environment and teaching approach. In a typical classroom, CYP with FASDs present educators with the following challenges: hyperactivity; short attention span; erratic mood swings; poor memory; lack of social skills; auditory/vocal processing; visual sequencing; sensory integration difficulties (particularly lack of co-ordination); poor retention of task instruction; and numeracy/mathematical difficulties (Carpenter, 2011).

Fetal alcohol spectrum disorders now account for the largest group of CYP presenting with non-genetic learning difficulties/disabilities (Abel and Sokol, 1987, cited in BMA, 2007, p. 2). The difficulties that CYP with FASDs face in the classroom epitomise that much-used phrase ‘complex needs’ (Dittrich and Tutt, 2008; Carpenter, 2011). FASDs often co-exist with other conditions such as attention deficit hyperactivity disorder (ADHD), autistic spectrum disorders (ASDs), and oppositional defiant disorder (ODD) and may be compounded by attachment difficulties and sensory processing difficulties (Blackburn, 2010; Carpenter, 2011).

Where are the children with fetal alcohol spectrum disorders in our schools?

Children and young people with FASDs may account for as many as 1 in 100 children (Autti-Ramo, 2002), with difficulties ranging from mild to profound (Carpenter et al., 2011), including physical, learning, and behavioural difficulties and disabilities. This means that some CYP with FASDs will have needs that are evident at birth and easily diagnosed, and will be recognisable by educators as in need of support. However, other CYP with FASDs will have hidden needs (Blackburn, 2010; Carpenter, 2011), which make the educator’s role more challenging. In addition, ‘underdiagnosis’ (sometimes referred to as misdiagnosis; see Carpenter, 2011, and Chapters 2 and 5 of this book), when conditions such as ASD or ADHD are diagnosed instead of FASDs, can mean that CYP are presented with a curriculum which is only partially suitable for their needs (see Blackburn, 2010). Do you have CYP with FASDs in your classroom?

If only I’d known . . .

Educators would do things differently if only they knew. Egerton (2009) points out that CYP with FASDs have no control over behaviours which parents and educators may find unacceptable or undesirable, for example not following instructions, forgetting rules, not relating to others appropriately, disrupting others, displaying emotional outbursts, and inappropriate interactions with other children and adults.

Children and young people affected by FASDs can also face misunderstanding about the often hidden cause of their very challenging learning behaviours, particularly where there are no obvious physical differences, as is most often the case.

The unusual style of learning and extreme challenging behaviour of CYP affected is out of the experience of many educators and, as there has been a significant shortfall in guidance for educators on how to teach children with FASDs in the UK, teachers find themselves ‘pedagogically bereft’ (Carpenter, 2011).

Importance of recognising learners with fetal alcohol spectrum disorders and addressing their needs

The importance of accurate and early diagnosis of FASDs has been recognised by many writers including parents (Fleisher, 2007, cited in BMA, 2007) and researchers (Streissguth and Kanter, 1997; Streissguth et al., 2004; Egerton, 2009; Blackburn, 2010; Carpenter, 2011).

As Carpenter (2011) points out, we have only to listen to the profound words of Elizabeth Russell, a mother of two sons with FASDs, to recognise that people wish that they had been given appropriate warnings upon which they could have based effective personal choices – not only for themselves, but also for their offspring:

If my son, Mick’s, paediatrician had enquired about my alcohol intake when he diagnosed Mick at six months of age as ‘possibly retarded’, Seth (my other son) would not now have Fetal Alcohol Syndrome. We would have two relatively healthy children in whose future was woven the thread of peace and contentment, not fear and apprehension, and I would never again have to look at my son’s terrified eyes hiding behind a make-believe smile.

(Russell, 2011, cited in Carpenter, 2011, p. 6)

Early diagnosis not only supports CYP affected by FASDs within the family context, but can have the benefit of preventing FASDs in those yet to be born.

The often complex family structure for CYP with FASDs, combined with lack of knowledge about FASDs amongst local authorities and social and health services, can imply that parents and carers have difficulty accessing effective and appropriate support to meet the diverse and changing needs of their son/daughter with an FASD.

The importance of valuing the contribution of ‘key family members’, including those related by social ties as well as blood ties (Carpenter, 2010, p. 4), in order to be ‘responsive to the daily context the family finds themselves in’ (ibid.) is crucial if educational settings are to take their responsibilities to CYP and families seriously, particularly where the family structure may change often, as can be the case for children with FASDs. Carpenter and colleagues (2011, p. 18) remind us of the rights of every child to be included as a learner within the curriculum, however great their degree of disability or learning difficulty. Article 29 of the United Nations Convention on the Rights of the Child recognises society’s responsibility to develop children’s personality, talents, and mental and physical abilities to their fullest potential through education (United Nations, 1989).

Hope for children and families affected by fetal alcohol spectrum disorders

Recognition of the need to understand the needs of CYP and families affected by FASDs is increasing. In terms of education, until recently, there was no direct guidance from any government agency in the UK to educators on how to teach CYP with FASDs. However, in October 2010, NOFAS-UK (www.nofas-uk.org) published a significant report offering guidance to teachers in all age phases. In August 2011, the Specialist Schools and Academies Trust (now called The Schools Network) published a report relating to CYP with complex learning difficulties and disabilities (CLDD), of which FASDs were a significant aspect (Carpenter et al., 2011).

The three major parent-led organisations in the UK, NOFAS-UK (www.nofas-uk.org), the FASD Trust (www.fasdtrust.co.uk), and FAS Aware (www.fasaware.co.uk), provide guidance and support for parents. The European Birth Mother Support Network (www.eurobmsn.org/), launched in 2010, is a network of women who drank alcohol during pregnancy and may have CYP with FASDs. The network is a place where mothers can share their experience and support each other.

In terms of medical and health-related initiatives, the World Health Organization adopted a global strategy to reduce harmful use of alcohol at the 63rd World Health Assembly, May 2010. Item 21c of the section ‘Policy Options and Interventions’ states goals of ‘improving capacity for prevention of, identification of, and interventions for individuals and families living with fetal alcohol syndrome and a spectrum of associated disorders’ (World Health Organization, 2010, p. 12).

In the UK, the first FASD clinic, run by Dr Raja Mukherjee (www.sabp.nhs.uk/services/specialist/fetal-alcohol-spectrum-disorder-fasd-clinic), offers specialist advice on the diagnosis of FASDs. It carries out detailed assessments of young children’s speech, language, and brain functions relative to their age. These assessments include photographic analysis of the child’s facial features to complete the diagnosis.

The ‘Alcohol in Pregnancy – Training for Midwives Project’ is an initiative of NOFAS-UK (2010a) designed to provide useful positive health information about the consumption of alcohol in pregnancy to midwives, who play an important role and can help prevent FASDs. The project has been reviewed by the Royal College of Midwives and the International FASD Medical Advisory Panel.

The advice to women relating to alcohol consumption during pregnancy remains controversial. The 2008 update to the NICE (National Institute for Health and Clinical Excellence) guidelines advised women to refrain from alcohol consumption during the first trimester and limit their consumption to one or two UK units per week thereafter (Royal College of Obstetricians and Gynaecologists, 2008, p. 16). NOFAS-UK through its Baby Bundle project advises ‘no alcohol consumption during pregnancy’, a view echoed internationally by the eminent medical researcher, and Professor of Paediatrics at the University of Washington, Dr Sterling Clarren (NOFAS-UK, 2010b). For a full discussion of the range of advice given to women on these issues see BMA (2007).

In terms of social care, The Adolescent and Children’s Trust (TACT) is the UK’s largest charity and voluntary agency providing fostering and adoption services (www.tactcare.org.uk).

In some countries, such as Canada and the USA, there is extensive guidance and a well-developed system of provision for these children. This depth and extent of provision is needed in the UK with some urgency.

About this book

This book aims to inform educators and the range of multi-disciplinary professionals who support CYP in educational settings about the implications of FASDs on:

• learning and development;
• attachment with others;
• family life;
• life outcomes;
• society.

It will also be useful to those working in social care, fostering and adoption services, respite care, and extended service settings such as short-break provision and holiday provision.

The chapters in this book can be read and used and referred to in any order; however, in order to use the teaching and learning strategies most effectively, the background and complementary information contained in the preceding chapters will be most usefully read first.

Chapter 2 looks at the history and effects of alcohol use on the developing baby in the womb. It also discusses how FASDs are identified and the likely numbers of affected CYP.

Chapters 3 and 4 discuss the impact of FASDs on learning and development, including an overview of some of the compounding factors such as attachment difficulties, sensory processing difficulties, and poor mental health. Chapter 4 provides some evidence-based teaching and learning strategies for educators and other professionals to use when designing appropriate curricula for CYP. Case studies provide an insight into how individual CYP have been supported in educational settings in the UK in various aspects of their learning and development.

Chapter 5 looks at the complex pattern of learning presented by children with FASDs. It defines their learning behaviour in the context of the overarching diagnosis of CLDD. Through a profile of the uneven and inconsistent patterns of learning in children with FASDs, the chapter recommends a new pedagogical framework in which to plan effective learning experiences. These are built on the tenet of ‘engagement’. A case study details how the use of the ‘engagement profile and scale’ can illuminate pathways to progress for a child with an FASD.

Chapter 6 outlines the complex family dynamics, and provides educators and professionals with a platform for understanding the nature of difficulties faced by families affected by FASDs. Birth and adoptive families are discussed and the importance of early attachment is highlighted in order for educators to understand the underlying nature of difficulties faced by CYP with FASDs in their early ...