Evaluating a Standardised Post-diagnostic Strengths and Needs Assessment for Autistic Adults: an Acceptability and Feasibility Study

Research Question: Is a standardised post-diagnostic strengths and needs assessment acceptable, feasible, and potentially beneficial for autistic adults receiving NHS diagnoses in the UK?

Background: Diagnoses of autism in adulthood are increasing substantially, yet provision of post-diagnostic support is highly variable, inadequate and inequitable across the UK.

A balanced strengths and needs assessment tailored to the individual could significantly improve post-diagnostic support by providing a personalised and holistic profile of an autistic adult's day-to-day operating (functioning) across domains.

An assessment based on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) CoreSets for Autism has been adapted for application in the UK context by our research team via an SBRI Healthcare grant.

This ICF-based assessment now needs in-depth evaluation to assess whether it is acceptable, feasible and potentially beneficial if implemented widely within NHS adult autism diagnostic services.

Aims and Objectives: The primary aims of this study are to assess the acceptability of our strengths and needs assessment for autistic adults and to evaluate feasibility of trial design for a future definitive randomised control trial (RCT) via a pilot trial.

This will assess whether proposed recruitment, randomization, data collection and intervention methods for a definitive RCT, comparing the ICF assessment plus questionnaires to questionnaires only, are acceptable and feasible for use within NHS adult autism diagnostic services.

Secondary aims are to gain a thorough understanding of the characteristics and mental health status of the population receiving autism diagnosis in adulthood.

Methods: This two-arm, multi-site, randomised pilot trial will recruit 72 autistic adults who have recently received NHS diagnoses across 3 services.

Participants will be randomly allocated to either complete the ICF assessment plus questionnaires or the questionnaires only, at baseline and 3 months later.

Comprehensive quantitative and qualitative methods will be used to evaluate key feasibility outcomes including recruitment, randomization, data completion rates, usability, acceptability, potential benefits and harms, and sample characteristics including demographics, mental health status and service use.

Progression criteria for deciding whether to proceed to a full-scale RCT will be evaluated.

Timelines for Delivery: Months 1-6 will focus on obtaining approvals, writing a protocol paper, and pre-registering the clinical trial. Months 7-12 will mainly comprise participant recruitment and data collection.

Months 13-18 will mainly involve data analysis, conducting qualitative interviews, writing up and submitting findings for publication, and preparing a funding application for the definitive RCT.

Anticipated Impact and Dissemination: If shown to be acceptable and feasible, wide-scale implementation of the standardised ICF assessment could significantly improve self-management and tailored service provision for autistic adults post-diagnosis.

Patient and public benefit would be anticipated to arise from the proposed definitive RCT demonstrating clinical and cost-effectiveness, which would lead to commissioning and adoption of the assessment within NHS services.

Research findings will be actively disseminated through open access peer-reviewed publications, plain language summaries, stakeholder engagement events, and targeted funding applications, in order to optimise real-world impact.