Perspectives in childhood-onset disabilities : Integrating 21st-Century concepts to expand our horizons

Purpose
A powerful aphorism states: “If I hadn’t believed it, I wouldn’t have seen it!” This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings.

Materials and methods
In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability (“What?”); reflect on the impact of these ways of thinking in terms of what we have conventionally “seen” and done (“So What?”); and contrast those traditions with contemporary concepts that we believe or know impact the field (“Now What?”).

Results
Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field.

Conclusions
We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of “childhood-onset disability”.

IMPLICATIONS FOR REHABILITATION
• 21st-century thinking about childhood-onset neurodisability builds on WHO’s ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.

• New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.

• There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.

• These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.

© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.