Abstract
Reviewed by Rena Phillips, Independent Practitioner, Co-ordinator, Post Adoption Central Support (PACS), Scotland, UK
In 2004 I edited a book for BAAF titled Children Exposed to Parental Substance Misuse: Implications for family placement (Phillips, 2004), where the effects of drinking during pregnancy were discussed. A decade later, I am struck by the increasing magnitude and seriousness of FASD and the extent to which it is repressed by society. Crucially, there is a lack of knowledge and understanding of the subject by social work, health and education professionals. A colleague who is a clinical psychologist referred to the condition as a ticking time bomb – it is not out of place to say that it has exploded.
There is only one published piece of UK research on the experiences and needs of carers of children with FASD (Mukherjee et al., 2013). It concludes that they feel unsupported and blamed for poor parenting. I am a member of adoption and foster care panels and co-ordinator of a post-adoption support service in central Scotland. My reading of the BAAF Form E on children registered for permanence indicates that social workers under-respond to alcohol misuse as compared to drug misuse and, importantly, fail to get the accurate alcohol history that is often denied by the birth mother. Prospective substitute families thus miss out on reliable information, advice and guidance to help them parent an affected child. More alarming, some families are parenting in the dark having taken on children without being told about possible alcohol brain damage. They struggle to access specialist services that are vital to placing disabled children successfully. This book is therefore very welcome.
The authors offer a good combination of medical expertise and direct practical experience. The book is described as intended for parents and carers, for whom it provides an empowering and supportive resource, but it is equally essential reading for social work, health and education professionals, as well as extended family members and friends. Although FASD is a complex and at times confusing subject, it is presented here in a clear and accessible style. The chapters are brief, convenient for busy families and professionals and easy to dip in and out of. The authors offer a great deal of advice and guidance, referred to as strategies rather than solutions.
The cover features a somewhat bewildered octopus. Its tentacles represent the maze of multiple diagnoses that families can find themselves embroiled in, with resulting conflicting explanations and advice. As there is no one test for FASD, it is recommended practice that an assessment leading to a diagnosis is carried out by a multidisciplinary team. The Scottish Government put out information on the availability of such teams in Health Boards in Scotland. I spent some time searching for this to be eventually told they did not exist. As the book indicates, it can still be very difficult for parents to find a doctor who is prepared to diagnose FASD. This not only requires professional knowledge and support but also action at government and policy level. The UK is clearly disadvantaged by a lack of political will to resource such work.
The book begins by looking at the unpredictable impact of alcohol on the developing brain and its lifelong influence. Mary Mather consistently advocates for carers to have a comprehensive birth family medical history, as well as a personal child medical history, and this is strongly emphasised in her chapter on FASD in relation to adoption and foster care. The core of the text deals with what does and does not work in parenting children with FASD and why. Traditional behaviour strategies such as time out, grounding, money as a reward and talking therapies are deemed unsuccessful. General strategies that can help include consistency in daily routine, a structured environment, constant high level of supervision and the building up of a local network of support for the future. Later chapters offer ideas for tackling more specific behavioural issues such as hypersensitivity to touch, light and sound, eating and sleeping difficulties, aggression and the management of discipline. The section about communication is particularly relevant from an assessment perspective. As Julia Brown reiterates elsewhere in this journal, affected children are described as chatty, but are behind with spoken language: ‘This difficulty with understanding and processing information which is given verbally is at the heart of the massive frustration felt by carers, teachers and others. How can this apparently bright, intelligent, chatty child not follow and obey a simple adult-led instruction?’ (p.79). The concluding chapters on growing up with disability focus on education and the transition to adolescence in relation to issues such as independence, arrested social development and friendships.
I was interested in the guidance offered in the book to ‘own the diagnosis’; it is advised that the earlier affected children know and understand in age-appropriate ways about FASD, the more positive are the outcomes for them as adults. This subject encompasses potential painful and distressing themes around identity, difference and stigma that merit further exploration.
Some children would have experienced the double jeopardy of being exposed to alcohol damage before birth and of remaining with birth parents incapacitated by their continued substance misuse. Those separated from their birth families will experience loss and guilt. The move to a substitute permanent family could trigger the question of whether they were adopted because of their disability. Their need to understand the past can be hampered by a lack of full background information, including medical information in relation to FASD. For some, a sensitive issue will be the fact that their impairment was caused by their birth mother, which can generate distressed and angry feelings. This poses extra challenges when there is post-placement contact with birth families. Such vulnerabilities will require responsive and skilled intervention to help children affected by FASD to obtain a clear and positive sense of personal identity.
This small volume packs in an impressive amount of advice and guidance. An adoptive parent whose opinion I sought remarked that while this was very positive, it could be experienced as too prescriptive. Nevertheless, the impressive spirit of the book is that it promotes the individuality of affected children, stressing there is no right or wrong way to parent them. It very much seeks to hold on to the potential and strengths of affected children as well as those of their parents and carers, and it does so in a loving and sympathetic way. Needless to say, it is highly recommended.