F words in Childhood Neurodisability

This is Day 30 for the 2019 99 Days to FASDay

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The ‘F‐words’ in childhood disability: I swear this is how we should think!

 P. Rosenbaum and J. W. Gorter

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The 21st century is witnessing a sea change in our thinking about ‘disability’. Nowhere are these developments more apparent than in the field of childhood disability, where traditional biomedical concepts are being incorporated into – but expanded considerably by – new ways of formulating ideas about children, child development, social‐ecological forces in the lives of children with chronic conditions and their families, and ‘points of entry’ for professionals to be helpful. In this paper, we have tried to package a set of ideas, grounded in the World Health Organization’s International Classification of Functioning, Disability and Health (the ICF), into a series of what we have called ‘F‐words’ in child neurodisability – function, family, fitness, fun, friends and future. We hope this will be an appealing way for people to incorporate these concepts into every aspect of clinical service, research and advocacy regarding disabled children and their families.

Childhood disabilities are conditions that do, or are highly likely to, affect the trajectories of children’s development into adulthood. Many have a neurological basis and are commonly referred to as ‘neurodevelopmental’ disabilities (or simply as ‘neurodisabilities’). Additional impairments often include musculoskeletal conditions or genetic syndromes, and cognitive, behavioural and communication disorders, reflecting the complexity of most of these conditions.

The field of childhood disability (what we like to refer to as ‘applied child development’) is still in its infancy as an academic discipline. For this reason, traditional views of childhood disability have been influenced very strongly by approaches taught and practised in biomedicine.

In this way of thinking, we work towards ‘fixing’ (one of the ‘F‐words’ traditionally used in childhood disability, as elsewhere). ‘Fixing’ refers to the expectation that the appropriate diagnosis will lead to the right interventions and that the underlying biomedical impairments will be ameliorated to the patient’s advantage. We believe that there are a number of significant limitations to the idea of ‘fixing’ in childhood disability.

The good news is that in the 21st century there are important new ideas about health and childhood disability that are helping us to expand our thinking. International health experts recently published a discussion paper about the limitations of the current World Health Organization (WHO) definition of health and proposed a new, more dynamic and empowering definition: ‘health is the ability to adapt and to self manage’ (Huber et al. 2011). Informed by our own ‘development’, the evolution of the field, endless discussion with colleagues and over two decades’ of childhood disability research at CanChild and more recently NetChild, we have formulated these ideas as a set of six ‘F‐words’, presented in a way that people will hopefully find both fun and memorable. Our purpose is to encourage people in the childhood disability field to apply these concepts in their work with children with disabilities and their families.

All children, including disabled children, are in a constant state of ‘becoming’. We believe that service providers need to think about the future – in a positive way – right from the start, and encourage parents to do so as well. This in no way implies that we should ignore the child’s and family’s present realities. Rather, we need to keep this horizon in view at all times. Addressing function, family, fitness, fun and friends will constantly remind us of what is important in the development of all children. We can ask parents and children with disabilities, at any time, about their expectations and dream for a future that is possible – and not decide for them what is impossible. These ideas present a challenge to professionals to acknowledge that ‘modern’ thinking provides many points of entry in our work with disabled children and their families.

The above is a summary from the original Open Access article. © 2011 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.

You can find more information and videos about the F words on the CanChild  website, including a PDF of the Six F Words poster.

Check back tomorrow for Day 31 on our 99 day journey to International Fetal Alcohol Spectrum Disorder Awareness Day.

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