What are we looking for in the field of paediatric ‘neurodisability’?

There have been attempts in many countries to ascertain the number of children with special health care needs and/or chronic health conditions. Chronic conditions in children can comprise various disorders, e.g. allergies, bronchitis, heart conditions or disease, epilepsy, cerebral palsy (CP), kidney conditions or disease, intellectual disability, emotional, psychological or nervous disorders, and learning disabilities. The frequency of chronic conditions in children varies from 3% to 35%, with asthma and allergy often accounting for the main part of the variation. Thus, it is laudable to try to distinguish a disabled child with reduced respiratory or skin functions from a disabled child with a reduction or deviation in neuromusculoskeletal body functions. Re-defining the field of childhood disability may be beneficial for epidemiologists (monitoring trends) and clinical researchers (reproducible outcome), as well as for policy makers (type and amount of specific care required for a particular group of children). This is what Morris et al. have tried to do by proposing a challenging definition of the word ‘neurodisability’ to describe a rather complex field (although the paediatric sub-specialty of neurodisability exists in the UK). The proposed definition of neurodisability is challenging because restricting the field of childhood disability may exclude some children with disabilities, whilst others, (e.g. children with autism spectrum disorder [ASD]), will be categorized in the neurodisability group. A childhood disability attributed to changes in the neuromuscular system would be included in the neurodisability group, whilst a childhood disability attributed to changes in the musculoskeletal system would be excluded from this group. However, the International Classification of Functioning, Disability and Health classifies neuromusculoskeletal and movement-related functions in the same subcategory. Moreover, professionals caring for such children are most likely to consider disabilities in children with myopathy quite different from disabilities in children with CP, and from disabilities in children with ASD. The place of care and the type of care required by these groups of children are not the same, and in most countries the professionals who care for these children are different. Another issue is the attribution of the neurodisability condition to impairment of the brain and/or neuromuscular system, placing emphasis on the changes in body structure rather than on the changes in body function (e.g. movement, learning, and vision). Quite often the changes in body structure leading to the disability may be unknown or remain unrecognized. Disabled children with a similar clinical pattern might thus be excluded from the condition of neurodisability only because their disability was unrecognized or insufficiently explored. Taking the example of CP, the idea of extending the definition of CP to cover other childhood disabilities was suggested during an international workshop 10 years ago. The creditable intention at that time was to allow children with other disabilities to benefit from the same support as children with CP. However, it was acknowledged that CP was not an aetiological diagnosis, but rather a clinical descriptive term describing changes in numerous developing functions. For this reason the intention of widening the definition of CP was not endorsed. Childhood disability is a well-recognized domain, at least in Europe, and it covers various impairments. Specific subgroups of childhood disability are well identified – ASD, CP, neuromuscular diseases, deafness, blindness, intellectual impairment – and it might seem odd to add another category to the subgroups i.e. neurodisability. However, it must be recognized that some childhood disabilities are difficult to assess properly, depending on the scales available for measuring the impaired function and on the severity threshold. Thus, although wide, the spectrum of neurodisability may include only those disabilities that can be assessed in a sufficiently reliable way. This has to be explored further. Nevertheless, the interest of non-governmental organizations and families in such a broad grouping of different types of impairment is of utmost importance. Parents of children with ASD have recently been very active in advocacy and they might not favour ASD being categorized under the wider term of neurodisability, since it risks making the clearly defined needs of their children less understandable. On the other hand, parents with children who have a metabolic disease may be upset not to have their child included in this large ‘neurodisability’ group, since their children also require specific care. This commentary has questioned whether ‘neurodisability’ would be an appropriate new descriptive category in paediatric or public health research. However, future field studies with clear inclusion/exclusion criteria and severity level thresholds are needed to explore the usefulness of this proposal.