University support for autistic students still waits for a diagnosis
Many of the young people I see are on a waiting list for an autism assessment when they start university. Families ask me whether the university will help before the diagnosis comes through. A new national study suggests the answer depends heavily on which university, and on which member of staff.
What the study did
Karen Cross, Fiona Knott and Alana James at the University of Reading used Freedom of Information requests. Under these, publicly funded bodies must answer. They sent a 77-item questionnaire to all 142 publicly funded UK universities. They received 125 valid replies, a response rate of 88%.
They asked about three groups of autistic students:
- those with a formal diagnosis
- those seeking a diagnosis
- those who identify as autistic and do not want a formal diagnosis.
What they found
Half of universities (50%) kept records on students with a formal autism diagnosis.
Only 16% kept records on students seeking a diagnosis. Only 7% did so for students who self-identify.
Only 2% had a formal policy to guide disability staff on supporting autistic students without a diagnosis.
In most universities, support for undiagnosed students was left to staff judgement and discretion. It often depended on diagnostic or medical evidence.
Why this matters
The authors point out that the law expects support to be based on need, not just on diagnosis. In practice, the study shows that diagnosis still acts as the gate.
The difficulty is the gap. A student's needs do not wait for the assessment. In my experience, the move to university is often the hardest point. New routines, shared housing, group work and less structure all arrive at once. A student without a diagnosis may reach that point with no agreed plan.
When support rests on one person's judgement, it varies. Two students with the same needs can get different help at different universities. They can get different help within the same university, depending on who they see.
What a university does not record, it cannot easily plan for. If only 16% record students awaiting diagnosis, most cannot say how many such students they have.
What the study does not show
This study describes what universities report about their own policies and records. It does not measure what students experienced or how well they did. The authors say that should be the next step.
Take-home
For students on a waiting list, and their families:
- Contact the university disability service before term starts. Do not wait for the diagnosis.
- Ask directly what interim adjustments they offer to students awaiting assessment.
- Take a letter from your GP, school or clinician. It should describe the difficulties and confirm the referral. A description of needs is often more useful than a label.
- Ask for any agreed adjustments in writing.
For clinicians and teachers:
- When writing for a young person on a waiting list, describe their needs in practical terms. Universities can act on that.
- Flag the referral date. It shows the need is recognised and the process is under way.
Dr Odet Aszkenasy is a Consultant Community Paediatrician and the author of The Genetics of Autism: A Guide for Parents and Professionals.
Reference
- Cross K, Knott F, James AI. Invisible needs and uneven recognition: a national FOI study of autism support across diagnostic stages in U.K. universities. Autism. Published online 8 October 2026. https://doi.org/10.1177/13623613261489841