Research with ARC East of England shows how using screening tools and including information reported by individuals and families can improve access to appropriate clinical autism assessments.
Many adults who are likely to be autistic remain undiagnosed and there is high demand for assessments, which can help people access suitable support for a better quality of life. Referrals to specialist services need to be appropriate, so people most in need are offered an assessment as quickly as possible. Screening tools can help clinicians decide how to progress assessments and make the best use of limited clinical resources.
Researchers at Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) and the University of Cambridge have been investigating how three screening measures can be used to help clinicians improve autism assessments, funded and supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (ARC EoE).
Findings from their service evaluation suggest that combining personal accounts from individuals (self-reported) and developmental history from their families or caregivers (informant-reported) early in the process can help decide which type of clinical assessment is required. This can support clinical decision-making about who would benefit most from standard or enhanced assessments, and who may need further examination.
Lead co-author and consultant clinical psychologist Dr Janine Robinson applied for a Research Fellowship with ARC EoE and worked with CPFT’s Cambridgeshire Lifespan Autism Spectrum Service (CLASS) Clinic to analyse data from 422 adults referred to the specialist autism diagnostic assessment service over four years. The research team examined three commonly used screening tools: the Autism Spectrum Quotient (AQ), the Empathy Quotient (EQ), and the Childhood Autism Spectrum Test–Relatives’ Questionnaire (CAST-RQ).
Janine said: “We investigated the individual and combined contributions of the measures on diagnostic assessment outcomes linked to age and self-reported gender. These tools can potentially streamline the diagnostic assessment process, enabling clinics to use their time and staff more efficiently without compromising accuracy. Screening tools should never replace comprehensive assessments but help to make diagnostic assessment services more efficient and equitable."
"This project would not have been possible without funding from the NIHR ARC East of England and my supervisors and colleagues in the Department of Psychiatry at Cambridge University.
Thank you to my co-authors, research team and colleagues at the CLASS clinic for all your help and support.”
Dr Janine Robinson, Lead co-author and CPFT Consultant Clinical Psychologist
The main results of the study suggest that combining the three screening questionnaires can reliably identify adults who have a very high likelihood of going on to receive an autism diagnosis. Strikingly, those who met the screening cut-off on all three measures had a 98.3% likelihood of being diagnosed with autism. However, results also indicated that no individual or combined measure should be used to exclude someone from the assessment pathway. Including independent (typically parental) developmental history at this early stage of the pathway may contribute significantly to clinical decision-making.
Clinicians and researchers have expressed interest in the findings and implementing these tools in their clinics and Janine has shared initial findings at international autism research conferences. She has been contributing to a further multi-site NIHR-funded study investigating the three measures with partner organisations and has submitted evidence to present at international conferences.
This project started from internal observations and reviewing of clinical data at CPFT which led to a Fellowship application to run a service evaluation to investigate further. Funding was provided by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at CPFT and the Department of Psychiatry at Cambridge University.
“Our collaboration has transformed routine NHS observations into early evidence for a more efficient assessment pathway, highlighting the need for research to replicate these findings nationally.”
Carrie Allison, Lead co-author, psychologist and Cambridge University researcher
“There is now overwhelming demand for autism assessments among adults, but specialist services have not expanded at the same rate. Our findings suggest that three brief low-cost screening measures could be used to help prioritise cases and streamline assessment pathways, without compromising accuracy.”
Professor Sir Simon Baron-Cohen, Co-author, Consultant Clinical Psychologist and Director of the Autism Research Centre at Cambridge University
The full article can be accessed online from the PLOS One journal:
Investigating the role of three screening measures to support clinical decision-making in adult autism assessments
The ARC EoE Fellowship programme is currently open to applications until 7 January 2026. For more information and guidance on how to apply for support to do applied research projects that can improve health and care services, visit the ARC EoE website.
