Autism support without diagnosis is widely offered – but on what terms?

Universities are increasingly being encouraged to adopt needs-led approaches to supporting autistic students, rather than treating formal diagnosis as a prerequisite for adjustments.

Our recently published national research suggests that many universities already report doing so. The more pressing question may therefore be not simply whether support is available without diagnosis, but what that support includes, how eligibility is determined, and whether students can access it in practice.

Moving away to university can involve leaving familiar routines and support networks while adapting to new academic, social and independent-living demands, which can feel like a pressure cooker. Existing coping strategies may be tested, and previously unrecognised support needs can become apparent. Some students arrive awaiting an autism assessment; others recognise themselves as autistic during their studies, while some self-identify without wishing to pursue a diagnosis. These circumstances are not equivalent when access to support depends on diagnostic evidence.

Recent Wonkhe articles by Sharanya Sivarajah and David Kernohan have brought renewed attention to needs-led provision. Sivarajah considers the implications of the independent review chaired by Peter Fonagy, which advocates a “needs-led plus diagnosis” approach.

Support without diagnosis

In a National Freedom of Information (FOI) study, we examined how UK universities recognise and support autistic students across three diagnostic positions: those formally diagnosed, those seeking or awaiting diagnosis, and those who self-identify as autistic without pursuing formal assessment. Of 142 eligible publicly funded UK universities, 125 provided valid responses (88 per cent).

One finding was particularly encouraging. Of the 125 responding universities, 102 (82 per cent) reported making adjustments immediately at the point of need for students suspected of being autistic but without a formal diagnosis.

This matters in a debate about removing diagnostic barriers. But the headline figure leaves an important question unanswered: what kind of support can students actually access?

A minority of universities reported restrictions, including temporary adjustments or exclusions for provision with budgetary implications. Our analysis also suggested a broader distinction: academic and sensory adjustments were widely reported, while more resource-intensive provision was more closely associated with diagnostic evidence or funding eligibility.

Removing a blanket requirement for diagnosis is one thing; understanding where diagnostic evidence continues to influence eligibility for particular adjustments is another.

Not every student without a diagnosis is awaiting one

The current focus on diagnostic waiting lists risks overlooking an important distinction: not every autistic student without a diagnosis intends to pursue one.

Temporary adjustments may help those awaiting assessment. However, for students who self-identify without pursuing a diagnosis, arrangements framed around eventual clinical confirmation may not reflect their circumstances.

Our FOI findings suggest variation in how institutions respond to this group. When specifically asked about students who self-identify without pursuing assessment, 43 universities (34 per cent) reported providing adjustments immediately at the point of need. A further 41 (33 per cent) described some adjustments on self-declaration, with full support following a subsequent needs assessment, while 14 (11 per cent) reported providing no adjustments without formal diagnosis.

The qualitative responses add another dimension. Among 47 universities providing additional descriptions of adjustments for students awaiting diagnosis, 25 referred to case-by-case or needs-led arrangements. By contrast, eligibility and evidence requirements were the most frequently identified theme among the 26 universities providing additional descriptions for self-identifying students, appearing in 17 responses.

These were different sets of open-text responses, not directly comparable measures of provision, but they show why diagnostic provision matters when considering how support is understood and communicated.

A university needs assessment is not necessarily the same as requiring clinical diagnosis; it may be an appropriate way to identify adjustments. The important question is whether students understand what the assessment involves, what evidence is expected and what support remains available without clinical confirmation.

A needs-led approach should not assume that every autistic student without a diagnosis is simply waiting to obtain one.

Balancing individualised support with consistency

Only three of the 125 responding universities (two per cent) reported having a specific formal written policy outlining the steps staff should take when supporting students suspected of being autistic but not yet assessed or diagnosed.

Nevertheless, 111 universities supplied information about the steps typically taken in such circumstances.

Established practices can exist without specific written policy; the challenge is ensuring that these approaches are understood and applied consistently across an institution.

Related research adds a student-facing perspective. Their review of publicly accessible autism-related policies across 132 UK higher education institutions found considerable variation, with 40 institutions having no policies meeting their search criteria. This does not mean support or internal guidance was absent, but highlights the importance of making information easy for students to find.

Individual staff judgement remains important, yet students’ needs differ, and overly rigid procedures may not accommodate those differences. Flexibility and consistency need not be competing aims. Where decisions about eligibility and adjustments rely heavily upon individual discretion, how can universities be confident that students with comparable needs encounter reasonably consistent arrangements, rather than support shaped primarily by whom they happen to speak to?

This is not an argument for a standardised package of adjustments. Clearer guidance could preserve professional judgement while helping staff recognise when specialist advice is needed, so that students do not depend on encountering the right individual to have their needs considered.

Knowing what support is available

Even where universities offer adjustments without formal diagnosis, students need to know what they can request and under which conditions.

When asked whether they explicitly communicated that students seeking an autism diagnosis could access in-house support without formal diagnostic confirmation, 108 universities (86 per cent) reported doing so, while 17 (14 per cent) did not. This self-reported figure cannot tell us what information students can readily find or understand.

In a separate question about communicating evidence requirements for in-house support and Disabled Students’ Allowance (DSA), 49 universities (39 per cent) selected an option indicating that students were informed only after approaching disability services. Responses were not mutually exclusive, and DSA and university-provided adjustments have different eligibility requirements.

Individual discussions with disability advisers can be valuable in recognising needs and determining appropriate adjustments. However, information provided following initial contact differs from guidance students can locate independently, particularly when uncertain about disclosing their autistic identity or support needs.

Should students be expected to enter a support process before they can establish whether that process is intended for them?

From available support to support that works

An adjustment being available does not necessarily mean that students can access it, and having an adjustment agreed does not automatically mean it is appropriate or works in practice.

In ongoing doctoral research, I am exploring this through focus groups with autistic university students and recent graduates across the three diagnostic positions. Discussions have included accounts of students having to identify their own needs, find services, and repeatedly follow up on agreed adjustments. Some described restrictions without formal diagnosis; others reported more straightforward experiences, where university staff took responsibility for coordinating support.

Our published FOI findings show what universities report offering, but not whether students knew what was available, obtained the adjustments they sought, or found them useful.

An adjustment agreed through disability services may still depend on communication and implementation across other parts of the university. Its existence on paper does not necessarily tell us how it operates within students’ everyday academic lives. Universities could begin by examining the route from recognised need to useful support: what students can learn before approaching services; where diagnostic evidence is required and why; how consistently decisions are made; and whether agreed adjustments are implemented and reviewed.

This would shift evaluation beyond the existence of a policy or reported offer and towards how students encounter the provision intended for them. There is much to welcome in universities’ reported willingness to offer adjustments without formal diagnosis. The challenge now is to establish how these arrangements operate beyond the point at which support is offered.

Availability should be the starting point for evaluating needs-led provision, rather than the measure of its success.

This blog is part of our series on meeting expectations on disability inclusion. Click here to see the other articles in the series.