Precision diagnosis and targeted support for autistic people
Autistic people are a diverse group of individuals who share some core features but differ widely in how autism presents, in their support needs, and in life outcomes. Diagnostic definitions have also changed over time, and these have influenced how people are diagnosed, understood and impacted their identities. This research program aims to study this diversity in ways that lead to better, more targeted support for autistic people where it is wanted.
Some worry that dividing autism into subgroups could narrow eligibility for services and cut people off from support they currently receive. Others worry that treating autism as one undifferentiated category means people with the differing support needs get overlooked. These are both reasonable concerns that cannot be simply argued away.
The aim of this program is not to draw new, fixed lines around “types” of autism. It is to better understand what drives this diversity, including an investigation of developmental, genetic, social and environmental factors, and whether these factors are linked to different outcomes and different kinds of support needs. In the longer term, the hope is that this will mean that tailored support can be offered earlier, and matched more closely to the person rather than to a single diagnostic label.
This program will use longitudinal and cross-sectional data across behavioural and cognitive phenotyping, genetics, transcriptomics, and neuroimaging to understand differences in underlying biology; epidemiological data to link these differences to outcomes; and engagement with autistic people and their families to understand the current diagnostic and support ecosystem and the different types of support that could help.
We believe that such research, conducted responsibly, should be build on strong evidence of real, robust differences that can relate meaningfully to outcomes, with a clear path from diagnosis to care and support. We will work with autistic people and their families throughout, including groups who have been traditionally under-represented in research.
Key publication:
Polygenic and Developmental Profiles of Autism Differ by Age at Diagnosis