Evidence-based practice and intellectual disabilities and Psychological therapies for adults with intellectual disabilities

Disability studies (DS) has long had a strained relationship with the disciplines of clinical psychology and associated educational practices and therapies. Nevertheless, there is a whole world of theory, practice and evidence within those fields with which disability scholars must engage in order to understand the forms of ‘help’ that might be available to some disabled people. In DS the debates amongst disability theorists regularly turn between an analysis of societal disablism and a call to ‘bring back the body’ – an acknowledgement that impairment does matter (Shakespeare and Watson 2001). The simple dualisms of social and medical model are long gone, and many would call themselves ‘critical realists’ (Gable 2013), often with the explanation that it is the fluctuating interaction between social and personal factors which affects disabled individuals (McKenzie 2013). In any case, we cannot assume any more that disability studies and therapy stand on two sides of a deep chasm; Vehmas and Watson (2014), for instance, have argued in Disability & Society for the idea that disabled people might want to enhance their capabilities, opting for treatments and resources that enable them to be included in society.

With some of those ideas in mind, this review offers a brief commentary on two books about therapeutic practice for people with intellectual disabilities (ID), both published by Wiley-Blackwell within one year. First, I will discuss Peter Sturmey and Robert Didden’s comprehensive and scholarly manual on the evidence base for a range of approaches and interventions, targeted at therapists, clinicians, psychologists and professionals. This is perhaps not the type of book that is ordinarily reviewed in the pages of Disability & Society, since it unashamedly adopts – in fact, unquestioningly assumes – a medical approach to intellectual disability. By contrast, Taylor, Lindsay, Hastings and Hatton have put together an edited collection of chapters that focus almost exclusively on psychological therapies to people with ID. They start from the historic ‘general lack of regard for the mental health needs of people with ID’ and from the assumption that this group of people have a right (often unmet) to generic mental health services, under the Equality Act 2010. These two books, while both addressing the field of therapy, thus have very different starting positions. This review sets them beside each other, in order to show how debates relevant to DS play themselves out in this field.

First, the Sturmey and Didden book. Evidence-based Practice and Intellectual Disabilities is set out in two parts, with the four chapters in Part One providing an overview of ‘foundational issues’, which include some consideration of the notion of evidence, followed by chapters on adaptive and maladaptive behaviour, and an interesting discussion on the need for economic analyses. The second part contains the substantive chapters directed at therapists dealing with specific ‘issues’, which include, for instance, self-injurious behaviour and feeding problems. This book is scarcely a page turner, but rather a reference source that would attract a specific audience for each chapter, depending on their clinical context. Each chapter is densely packed with a review of the evidence, often a review of several different meta-analyses of studies around a particular topic. Conclusions are drawn in a neutral style, going no further than the evidence allows, and generally not offering the opportunity for reflection or consideration of alternative approaches.

The introductory chapters present some interesting argument and rationale for the methods used in evidence-based practice, which could be extremely valuable both to clinicians, and to students in psychology and intellectual disability. For instance, the value of specifying the terms of a research question and of evaluating the quality of research evidence are covered in the introductory chapter, with some thoughtful reflection on the value of including evidence from a meta-analysis of smaller experimental studies, where the gold standard of a randomised controlled trial does not exist. The authors rightly point out that the problem for the therapist is most likely to relate to ‘this specific person here and now’, rather than to the large-scale generic evidence provided by a randomised control trial. However, it is vitally important, as the authors maintain, that professionals have a reliable evidence base, in order to avoid the type of bad science that could actually harm patients (an example is given of psychoanalytic treatments for autism based on unsubstantiated theories about ‘refrigerator’ mothers, resulting in children being wrapped in cold sheets to reconnect them with their bodies, resulting in considerable distress and no benefit to the children). A less extreme, and perhaps more common, situation is where a therapist responds to the immediately presenting problem, by keeping a client safe, without implementing longer term treatments that have been proven effective.

An important point raised in the introductory chapter, which underpins much of the book, is that of how to determine the value of an outcome. Simply because two treatments ‘work’, this does not mean they are equally valuable, since the outcomes they relate to might have a different value for the disabled individual. One of the key controversies rightly raised at the start of the book is that various therapists align to differing understandings of the problems experienced by people with ID. Nevertheless, all of these services are often expensive, and Chapter Four brings into the equation the question of economic evaluation. There is a glimpse here of debates amongst psychologists, with Taylor et al.'s (2013) text set beside Sturmey’s. The former are cited as stating that psychological therapy is not fundamentally aimed at saving money, but at improving health and well-being of people with mental health needs. Sturmey attempts to reconcile this view with his own argument, by showing that client outcomes and quality of life are indeed at the heart of everything, but that this does not preclude an economic analysis. This thread is pursued throughout the book, with early intensive interventions being favoured, since they will prevent problems at a later stage. Toilet training is a clear example given in Chapter Four. There is also an embedded assumption throughout the book that practitioner-determined behavioural outcomes and treatments are most beneficial (i.e. adapting behaviour towards a perceived social norm), and that increasing the intellectual functioning of individuals is also inherently beneficial. This can translate on occasions into the goal of providing for the ‘possibility of recovery from ASD [autistic spectrum disorders]’. Those who adopt a view of autism as neurodiversity, and who may value their autistic brains (Kapp 2011), would find some of this very unpalatable. One cannot help but recall the much re-quoted phrase used by a mental health survivor: ‘I consume mental health services like cockroaches consume Rentokil’ (McLaughlin 2009, 1109).

Sturmey and Didden’s book continues through its various substantive chapters to address problems relating to aggressive and then self-injurious and stereotypic behaviour, followed by feeding problems, sleep problems, anxiety disorders, mood disorders and, finally, offenders with ‘developmental disabilities’. The strict standards for what counts as evidence remain in force throughout, and so there are some areas in which the reader will find that most clinical approaches are in fact ‘unproven’. Despite the robust nature of the evidence, however, there are many sloppy proofreading errors. For instance, on the final two pages of the book there are three errors at least, which include ‘medication skills’ for ‘meditation skills’!

An underlying assumption in this book is that the individual presents with what is essentially a medical problem, which is treatable by some form of intervention instituted by psychology. The case of depression is a typical one; we know that there is a high prevalence of depression amongst people with ID. Yet the reader will conclude from Chapter 11, on mood disorders, that most of the psychotherapeutic treatments available have no proven case when applied to people with ID. Additionally, those of us who know people with ID who are depressed will recognise that much of the initial problem is contained in social factors, including low income, lack of intimate or personal relationships, low levels of participation in ordinary community activities, and perhaps also a lack of opportunity to achieve and contribute to society.

These ‘social determinants’ of emotional difficulties are given more space in the second volume Psychological Therapies for Adults with Intellectual Disabilities, edited by Taylor, Lindsay, Hastings and Hatton, which focuses almost exclusively on mainstream psychological therapies that can be adapted and used with a range of people with ID. Taylor and Knapp in the introductory chapter start from the position that the mental health needs of people with ID have often been disregarded, and that mental health services should be available to them, and in fact should be ‘reasonably adjusted’ to meet their needs as a matter of equality (Equality Act 2010). In the past, there has been resistance amongst clinicians towards therapies such as cognitive behaviour therapy (CBT) because of the presumed inability of people with ID to manage these often verbal techniques. However, the authors perceive a recent change in professional attitudes. Emerson and Jahoda then proceed in Chapter Two to explore some of the ‘upstream’ factors which predispose people with ID towards mental health problems, and argue persuasively that we need both to think across these wider social determinants, knitting them together with the more proximal, immediate causes of mental health distress. For instance, there is evidence that exposure to poverty in childhood has a pervasive negative impact on health and well-being, and that people with ID are more likely to be amongst the poorest in society. This may account, according to these authors, for 20–50% of the increased difficulties experienced by children with ID. Factors such as acute life stresses, abuse and poor family functioning will compound these children’s experiences, as will ongoing disablism, discrimination and hate crime experienced by people with ID. Adam Smith, from 1790, is brought in here to lend weight to an argument that has much current relevance: ‘If social and interpersonal exchanges are a means by which people learn who they are then there is the possibility that individuals with mild ID might internalize stigmatized views about themselves’ (Psychological Therapies for Adults with Intellectual Disabilities 21).

A theme running through this chapter, and to some extent the whole book, is that a sense of control, mastery and self-esteem are important to counter the effect of poor socio-economic position and societal discrimination. What, then, are the implications for the work of therapy? Clinic-based approaches might unfortunately compound the disadvantages faced by people with ID, and so systemic, multi-disciplinary approaches are argued for instead. However, an interesting point is made here that the more skilled therapists tend to be allocated to people with the most complex needs, and so are drawn towards ‘crisis interventions’; working at this intense individual level means that it is often difficult to tackle the systemic, social causes of psychological distress.

The remaining 15 chapters of the book consider a range of different therapies and therapeutic functions. For instance, there is a chapter on assessment of mental health problems, preparing people for psychological treatment, and then adapting particular therapies for people with ID. Cognitive behavioural therapy is explored in several different contexts, and so is psychotherapy and psychodynamic therapy. In some cases, the reader is offered specific evidence about an approach as it is adapted for a particular group, such as CBT for inappropriate sexual behaviour in men with ID. Just as in the Sturmey and Didden book, there is a systematic presentation of evidence about each of these therapies, as used with people with ID. For instance, Chapter Nine focuses on anger control, starting with a consideration of the many functions that anger can fulfil. It then moves on to briefly consider evidence about drug treatments and behavioural treatments, followed by a full listing of the evidence about cognitive behavioural therapy. From the vast number of small studies of CBT since 1985, Taylor and Novaco conclude that this approach can be assumed to be effective for people with mild or moderate ID.

There is just one chapter by Jones and Dowey that examines behavioural approaches, challenging therapists to look at behavioural approaches in a fresh light, both by adopting a more systemic view of the problems encountered, and also taking on more of an ‘advocacy-based role’. There are well-aired differences of opinion between Sturmey (2006) and Emerson (2006) on the relative benefits of CBT itself, and the behavioural components of interventions that have been included in studies. However, rather than dwell on these, the present authors go on to discuss practical ways to improve the quality of life of people with ID, including for instance by increasing activity levels through Active Support. The implication for therapists is to intervene less with the client directly, but ‘instead with the client’s best interests targeting the contexts or systems within which the client operates’ (Psychological Therapies for Adults with Intellectual Disabilities 233). For instance, if a client (sic) complains of bullying, the therapist should naturally tackle the source of that bullying, rather than just provide individual therapy to the person being bullied.

These two books thus represent a live debate within the field of psychological therapy, namely that between adherence to a behavioural approach, based on the evidence from large-scale control group ‘experiments’, and the belief that the full range of mainstream psychotherapeutic practice should (as a matter of right) be open to people with ID. Unfortunately, for those supporting the latter position, there is less ‘gold standard’ evidence to back up their claims, and so Taylor, Lindsay, Hastings and Hatton end with a renewed call for more research efforts to undertake large-scale trials of psychological therapies with people with ID. They also acknowledge that most of the therapeutic approaches discussed in their book have been carried out with people with mild or moderate ID, not those with more profound needs.

So we are left with the real divide here: are we to accept that behavioural methods, with scant concern for individual feeling and insight, are appropriate for one group of people with ID, those with more complex and profound needs? Is the right to mainstream psychology restricted to those who can speak for themselves, or who have higher levels of cognitive ability? Yet it is precisely those with the most complex needs who have been shown to benefit most from individual, personalised social care solutions. Instead of accepting group home solutions, or even specialised ‘treatment’ centres, for these individuals what might help most is some joined-up thinking between health and social care, with a recognition that both can contribute to the mental well-being of those who have the most urgent needs for a supported lifestyle. A personalised solution is one that is individually tailored to each person, will accept and support their humanity and will help them develop a lifestyle that suits them with exactly the right type of relational support around them.

Finally, what of therapy and disability studies? Many clinical psychologists would baulk at the theoretical debates that are conducted in DS; for instance, in the pages of this journal, where critiques and counter-critiques of critical approaches to disability are argued. Nevertheless, on reading the Sturmey and Didden book in particular, I felt that what is most needed is to inject just an ounce of critical theory into ‘practice’, as well as to inject some more practical concerns into theory. Fortunately, in the pages of the second book by Taylor and colleagues one can glimpse that critical awareness. It is that critique which might enable practitioners to question their own deeply ingrained assumptions about problematic individuals, and to recognise that human emotions are the same throughout the population, albeit mediated through different types of cognition, and in vastly different social circumstances.

Val Williams
University of Bristol, Bristol, UK
[email protected]
© 2015, Val Williams
http://dx.doi.org/10.1080/09687599.2015.1014670