Neurodiversity and Data

If it does not get measured it does not get done.

Abstract

Inadequate data, acts as a barrier, making it difficult for public bodies, to measure the impact of neuro inclusion policy.

The Neurodivergent (ND) community suffers from a problem of triple invisibility.

-ND people are frequently not visible to themselves - Most ND people are never diagnosed and therefore do not know they are neurodivergent.

-ND people are not visible to other people. You cannot tell if someone is ND by sight or casual observation.

-ND people are not visible in public policy. Without good data it is hard for public policy to measure differences between the experiences of ND people and other members of society.

While this issue of visibility is significant to the ND community, failure to recognise the significance of neurodivergence has a wider impact on the economy and society. For example, in the UK around 9m working-age people are not in employment. 2.6m are not working for health reasons. (Sky News , 2024) Many in this category are ND, not diagnosed at school and wanting to work. If they were able to work it would increase economic growth, reduce benefit bills and lift a pressure on the NHS. However partly because of lack of quality data Neurodivergence is rarely identified as a focus for employability policy.

This paper concludes with a call to action to researchers and advocates. The ND community should pragmatically build a data toolkit, which would embrace shared definitions, a shared approach to estimating the incidence of neurodiversity in the population, a shared approach to using survey data to estimate the incidence on neurodivergence in various settings and a shared convention on how to benchmark data.