The Autism GP Diagnosis Study

What we want to find out

This study will investigate whether General Practitioners (GPs) can accurately assess autism in a Primary Care setting when compared to specialist clinicians. We want to see if this change could help shorten the current waiting lists and get people the information and support they need sooner.

Why we’re doing this research

Autism is a set of neurodevelopmental differences and disabilities that are an intrinsic part of human neurological diversity. An estimated 1.1% of adults in the UK are autistic.

Diagnosis rates increased by 787% between 1998 and 2018. The increased demand for autism assessments means that healthcare systems, including the NHS, are struggling to meet the need due to a lack of capacity, resulting in long delays for people seeking a formal diagnosis and support.

As of June 2025, 227,813 people are waiting for an assessment in England.

90% of people wait longer than the three-month limit recommended by the NICE guidelines.

For children, the average time from referral to diagnosis is nearly a full year (352 days).

These delays hinder people’s ability to get the services and support that may come with a formal diagnosis.

This research project is investigating a practical solution: could your local GP, aided by a series of measures and resources, arrive at a similar assessment as a specialist clinician? If successful, we hope this could shorten the current waiting times for an assessment.

Method

We are testing a new model where GPs are empowered to lead the assessment process.

Training: GPs who join this project will complete a new online education module containing guidance materials and a video developed specifically for this research.

Recruitment: We will recruit up to 250 patients (aged 18 months and older) through their local GP practices.

Questionnaires: Before seeing their doctor, patients (or their parents/carers) will complete questionnaires covering topics like autistic traits, sensory processing, and developmental history.

GP assessment: Each patient will have up to three consultations with their GP. The GP will then complete their assessment. Patients will not receive a copy of this report.

Research Clinician assessment: Following the GP appointments, patients will then attend two Research Clinician appointments with two separate Research Clinicians who will assess if the patient is autistic. A copy of the Research Clinician report will be provided to the patient. This will be a research diagnosis and cannot be used to access services or support.

We will evaluate this by:

Checking accuracy: Comparing autism assessments done by GPs with those done by specialist clinicians. This specialist will not know what the GP concluded.
Building confidence: Assessing how confident GPs feel after receiving specialised training.
Testing feasibility: Determining if GP-led diagnosis works well in primary care settings.

Community engagement

We have consulted with autistic people and their family members through a survey and focus group. We received 42 responses from autistic adults and caregivers who read the study overview and provided their feedback on the importance of the study and whether they were supportive of the project.

The feedback was largely positive: the respondents saw this research as highly important. They also provided valuable constructive comments about the study plan, which we explored further in focus group sessions.

We conducted focus group sessions with a group of autistic adults and a group of caregivers. Both groups were supportive of the project overall and saw merit in addressing the long waiting lists for autism assessments.

Potential impact

This research could provide evidence that has the potential to cut the waiting time for an autism diagnosis by diverting patients with clear presentations away from specialist clinics and toward their local GP.

It may also help to reduce the time taken to administer a diagnostic assessment. Empowering GPs with the right tools to make autism diagnoses could help to meet demand and shorten waiting lists.

Results

We anticipate sharing the results in 2027. When ready, the key findings will be shared on this page.

Staff:

Funders:

Back to current projects