SOAPBOX The Developmental Psychiatry Manifesto

JEREMY TURK
University of London, UK

T H E T I M E H A S come for a manifesto arguing for the mutually benecial merging of traditional general child and adolescent mental health services (CAMHS), and more specialized mental health services for children and adolescents who have intellectual disability, under the rubric of developmental neuropsychiatry. Actually, this time is long overdue and we should question why change has been so slow in coming. The arguments for this are persuasive and logical. On a personal level, I have long believed in a biopsychosocial approach to child and adolescent (or more properly developmental) psychiatry. The disciplines of learning disability psychiatry and child and adolescent psychiatry have much to learn from each other, have much in common goalwise, and can help address serious shortcomings in each of their traditional perspectives of conceptualization, evaluation and intervention by coming together. Having set out this stall, we need to ensure that we do not sell ourselves short by falling for benevolent and even sympathetic, but ultimately reactionary, resistant and defensive responses from establishment camps within mental health sciences and services. In my experience, arguments that young people with intellectual disability and mental health problems are young people rst and foremost are often met with a benevolent, acquiescing and disdainful acknowledgement, along the lines of Of course we agree with your opinion, but they are different after all, arent they?! Or to put it even more offensively

J E R E M Y T U R K is Reader in Developmental Psychiatry, St Georges Hospital Medical School, University of London, Consultant Child and Adolescent Psychiatrist and Clinical Team Leader, Child Mental Health Learning Disability Service, Southwest London and St Georges NHS Trust, Consultant Psychiatrist, National Autistic Society, and President of the Royal Society of Medicine Intellectual Disability Forum. He is a member of professional advisory panels for the Foundation for People with Learning Disabilities, Contact-a-Family, US Fragile X Federation, British and French Fragile X Societies and Smith-Magenis Foundation. He sits on the editorial board of the Journal of Intellectual Disability Research and is co-author of the standard textbook Child Psychiatry, A Developmental Approach. Professional interests relate to problems experienced by children and young people with developmental disabilities and their families. He has lectured, researched and published extensively on behavioural phenotypes. C O N TA C T : Jeremy Turk, Psychiatry Corridor, Jenner Wing, St Georges Hospital Medical School, Cranmer Terrace, London SW17 0RE, UK. E-mail: j.turk@sghms.ac.uk

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and to coin a clich: dont get me wrong, some of my best friends have intellectual disability. This objectionable, yet still widely held, view is now thankfully being challenged a bit. Witness the clear statements emanating from the National Strategic Frameworks that children and young people with intellectual and other psychological and/or physical disabilities are children and young people rst and foremost and must be helped by services with expertise for this age group. Witness also the development of special interest groups from within child psychiatry (Child and Adolescent Learning Disability Psychiatry Network) and clinical psychology (British Psychological Society Learning Disability Special Interest Group), as well as the establishment of departments of developmental psychiatry (e.g. in Cambridge University) and chairs in developmental psychiatry (e.g. at the University of Northumberland). As a start, I wish to emphasize the following points which are also worthy of attention. 1. It is better to refer to children and young people with intellectual disability/mental health problems rather than the intellectually disabled/mentally ill. I have at times been referred to as a mental childrens doctor, or worse still the mentally subnormal childrens doctor. I have also been told that I work in a disabled clinic. Believe me it feels like that often. We have even had it logged that we have a disabled toilet facility whatever that may mean. 2. Our clients are served or supported by us rather than serviced by communitybased professionals. To use the newspeak, power needs to be returned to the consumers. One could argue who the hell do we think we are to know what is best for the customer? Yes, of course there are exceptions that no doubt some of you will tub-thump about. But think about it. When you go to the supermarket, who knows best what to buy, you or the supermarket manager (who may have majored in chocolate clairs at the University of Groceries but knows little and cares less about the pragmatism and therapeutic properties of pepperoni pizza and four-leaf salad)? 3. Similarly isnt it better to refer to client or individual rather than patient? Believe it or not psychotherapeutic encounters are a two-way process. Which one of us has not been moved or affected in some way by the predicaments of and stories told by their clients? 4. Furthermore, we need to distinguish between the use of abnormal meaning statistically distant from average, and the common social derogatory use of the word to mean something different, strange and inappropriate. I am abnormal. I am only ve foot six inches tall somewhat below average for white not-so-western European males. At least I know why this is. My father is approximately ve foot eight inches while my mother is approximately ve foot four inches, so I am in effect regressing elegantly towards the mean. At least I know that my being vertically challenged is not the consequence of early abuse and neglect or dysfunctional intrafamilial transactions . . . I think. But what I really, really want to deliver, and what is long overdue, is a far stronger, clearer and well-structured broadside against the glaring shortcomings of general CAMHS. These shortcomings have led to them frequently becoming the laughing stock of the mental health (not to mention education and social services) communities because of their denial of any neurodevelopmental or, lets face it, other developmental contribution to psychopathology (and often an equally great denial that any psychological approach other than systemic family therapy simply isnt cricket). Call me a radical if you like. I wish you would. I would like to see this point becoming a watershed in the evolution of sophisticated, progressive, evidence-based, cost-efcient developmental mental health services for all. Why, for example, do we still nd it
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Table 1.
Client/Needs led 1. 2. 3. We go to the client (literally and metaphorically). We listen to and collaborate with the client. I shall need to enlist your help so that I can see things from your point of view (Grieve, 1998). What are your perceptions of the assistance you receive?. We need to work out together what is best. Interventions are symptom led (Donaldson et al., 1998). Service led The client comes to us (literally and metaphorically). The client listens to and collaborates with us. I shall be helping you to see things from my point of view. What are my perceptions of the assistance I offer to you? (Garcia et al., 2002). Nanny knows what is best. Interventions are service led.

4. 5. 6.

problematic to move from a service-led organization to a client-needs-led organization? Of course I do not mean that all intellectual disability services are client/needs led and that all CAMHS services are service led. However, we would do well to consider the contents of Table 1 and ponder on how our own services score. The fact is that much of child mental health can be usefully conceptualized within a disability framework. And vice versa. Towards this end we are right to point out that, for example, autism is a disorder of developmental delays rather than purely of deviances. It is not a psychiatric disorder any more than intellectual disability is whatever ICD10 and DSM-IV may stipulate (Haddon, 2003). We also need to celebrate and emphasize the fundamentals of social acceptance and social acceptability (two different constructs) even in the face of persisting primary disability. Prevention is a fundamental aspect of our day to day clinical work, not just secondary prevention (minimizing the duration and severity of dysfunction) but perhaps even more importantly (but enormously difcult to explain persuasively to managers and commissioners) tertiary prevention the prevention of avoidable secondary impairments, disabilities and handicaps in individuals and families with chronic disabilities and/or adversities. We too can and must take our part in Celebrating Diversity and Bringing About Change. Perversely, it would seem to have been intellectual disability services which, although often branded as old medical model in emphasis, have broken free and celebrated this diversity rather than pursuing the holy grail of cure. Conversely, child mental health services, for all their rhetoric of process over diagnosis, still often behave as if they are treating disease entities. The question needs to be agged up: who are the last of the true biopsychosocial generalists in these elds? Certainly not child mental health services, by and large; and they need to change, and soon. Basically we need to expand the argument about the importance of genetics and other biological, psychological and social inuences on development to include data on continuous temperamental and other psychological variables, in order to make the point that it is all of us, and not just those with intellectual disability, or those with medical-modellike diagnoses such as attention-decit hyperactivity disorder (ADHD) and autism who are inuenced psychologically by their genetic and social inheritance. Religious belief needs to be replaced with scientic evidence-based understanding. Finally, I wish to challenge the orthodoxy that we do not have a meaningful data set for evidence-based practice in the eld of mental health problems in young people with learning disabilities. We are at extreme risk of nding ourselves in a state of sophist inertia created by misunderstandings regarding the nature of, and what is meant by, evidence. I believe this has been brought about, in part, by qualitative and
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quantitative misunderstandings. Qualitative misunderstandings need to be rectied by acknowledging that evidence is not just gold-standard randomized controlled trials, but a substantial spectrum including meta-research, literature reviews, single case studies, clinical series and consensus statements regarding what constitutes reasonable practice given current knowledge levels. Quantitative misunderstandings are based on the fact that we apply inappropriate and punitive thresholds to what constitutes good-enough evidence in our specialist elds. If these same tough thresholds were applied to other areas of clinical practice (say general surgery), then I suspect they could well be largely decimated! The main needs and issues seem to me to be the requirements for a clear, unambiguous and agreed evidence base within our specialisms, deference to the need for cost effectiveness, systematic and consistent recognition and application of the available evidence in our day-to-day clinical work, and an end to ignorance of available evidence with the associated risk of carrying on old approaches regardless. Among the database of psychological approaches with a reasonable evidence base I would include functional analysis, analogue ratings and behaviour modication for challenging behaviours, cognitive-behavioural psychotherapies for depression, WebsterStratton group cognitive-behavioural approaches for conduct disorders, and behavioural programmes for sleep disorders. Pharmacological approaches with reasonable databases include psychostimulants, tricyclics and clonidine for hyperactivity and attentional decits, selective serotonin reuptake inhibitors for depression, anticonvulsants for cyclical (and not so cyclical) mood and behaviour disorders, melatonin for sleep disturbance and maybe even atypical antipsychotics for social impairments but beware the short- and long-term adverse effects. Educational approaches with a reasonable evidence base include structured and focused programmes for autistic spectrum disorders, for example TEACCH, and awareness and understanding of behavioural phenotype-related variants such as gaze aversion, characteristic uneven cognitive proles and developmental trajectories, and frequently associated problem behaviours. We must also parade, name and, where necessary, shame those approaches, which frankly are lacking in any meaningful evidence base. These include individual psychodynamic psychotherapy for autism and ADHD, facilitated communication for investigation of alleged abuse, secretin for anything psychological or psychiatric, Domen-Delacato patterning (unless you like spinning round and round vigorously upside down while attached by your ankles to a twisted rope), auditory integration training, and anything involving dolphins.

Bibliography
Dew-Hughes, D. (2004). Educating children with Fragile X syndrome. London: Routledge Falmer. Donaldson, C., Tarrier, N., & Burns, A. (1998). Determinants of carer stress in Alzheimers disease. International Journal of Geriatric Psychiatry, 13, 248256. Emerson, E., Hatton, C., Bromley, J., & Caine, A. (1998). Clinical psychology and people with intellectual disabilities. Chichester: Wiley. Garcia, R., Joseph, T., Turk, J., & Basu, R. (2002). A comparison of parent and therapist ratings of outcome in a child mental health clinic. Child & Adolescent Mental Health, 7, 168172. Graham, P., Turk, J., & Verhulst, F. (1999). Child psychiatry, a developmental approach. Oxford: Oxford University Press.

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Grieve, T. (1998). Continence promotion among children with severe disabilities. Nursing Times, 94, 5859. Haddon, M. (2003). The curious incident of the dog in the night-time. London: Jonathan Cape. Turk, J. (1996a). Tertiary prevention of childhood mental health problems. In T. Kendrick, A. Tylee & P. Feeling (Eds.), The prevention of mental illness in primary care, pp. 265280. Cambridge: Cambridge University Press. Turk, J. (1996b). Working with parents of children who have severe learning disabilities. Clinical Child Psychology and Psychiatry, 1, 581596. Turk, J. (1998). Children with learning difculties and their parents. In P. Graham (Ed.), Cognitive behaviour therapy for children and families, pp. 110126. Cambridge: Cambridge University Press. Turk, J., & OBrien, G. (2002). Counselling parents and carers of individuals with behavioural phenotypes. In G. OBrien & M. Bax (Eds.), Behavioural phenotypes in clinical practice, pp. 150166. London: MacKeith Press. Turk, J., & Sales, J. (1996). Behavioural phenotypes and their relevance to child mental health professionals. Child Psychology and Psychiatry Review, 1, 411.

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