Putting child development back into developmental disabilities

In the heady, early days of my training as a developmental paediatrician at the Wolfson Centre, London, my mentor, Professor Kenneth Holt, introduced me to the idea of cerebral palsy and other neurological disorders as ‘developmental’ disabilities. I had difficulty grasping that concept – a result not of Kenneth’s patient teaching but of the power of the traditional biomedical model of ‘assessment–diagnosis–treatment’ that had been ingrained into us as 1960s medical students. It has taken many years to realize the obvious simplicity of what I was being taught. At a basic level, ‘neurodevelopmental disabilities’ are conditions involving the developing nervous system that have, or are likely to have an impact on the trajectory of that child’s development. This self-evident truth might have been apparent to others for a long time, so I hope people will forgive me for exposing my own delayed development of a conceptual understanding of this important idea. Let me offer three implications of this concept as a way of suggesting an expanded and perhaps refocused approach to intervention, treatment, and management of neurodevelopmental disorders of childhood. The first idea concerns the importance for us as service providers to attend to children’s development as the primary goal of whatever we are trying to accomplish with any advice we offer to parents. We need always to ask questions such as: What are the developmental (as distinct from the biomedical) goals we hope to achieve with this treatment? Will a change in the body structure and function aspects of this child’s status be associated with changes in function and development that matter to that child and family? What are the developmental stages that are important to the child at this time – and what are we doing to help the child realize those activities? Our traditional assumptions have been that we need to work on ‘impairments’ in order to promote function – assumptions that are somewhat questionable in light of recent work that has explicitly explored this question.1 At the same time, unless we strive to promote function with all the means at our disposal, we may be missing opportunities to enhance overall development, as was done with Butler’s pioneering work.2,3 The second idea is the essential need to counsel parents about the developmental as well as the biomedical aspects of neurodevelopmental conditions. Parenting is a dance led by the child; I encourage everyone who is a parent to reflect on this idea. What I mean is that as parents most of what we do in our interactions with our children is essentially reactive to their constant initiatives throughout childhood. Think of a typical toddler’s relentless mobility, or the 3-year-old’s development of language through constant explorations with questions that ask ‘Why?’ When children cannot ‘dance’ easily (i.e. develop in a typical manner) parents can be puzzled and seriously challenged about what they can do to help their child whose ability to initiate is constrained by their disorder. Traditional beliefs about therapy must be complemented by constant discussions with parents about what a child at a particular age or stage would typically be doing. We must then challenge ourselves and parents to accommodate the child’s functional differences and limitations to enable the child to achieve as much as possible of those developmentally appropriate activities as a bridge to learning – even when the function is achieved differently from ‘normal’. Finally, these approaches have important considerations for research. If we accept this expansion of the conceptual foundations on which we base our treatments, and increase the focus on developmental achievements, oughtn’t we to evaluate both children’s and parents’ development? It is my guess that we are missing opportunities to assess aspects of our interventions as they affect families – both their physical and emotional well-being,4 and their understanding of how to meet the challenges of parenting a child with a disability. This is in no way to suggest that we have had it all wrong until now. Rather I believe that there are opportunities both to make a difference for children with developmental disabilities and their families, and to evaluate these broader perspectives of our work.

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