What do neurodivergent PhD students need?

In May 2023, Eirini Tzouma asked me participate in a panel on Neurodiversity at the Durham Centre for Academic Development post graduate research conference. Sadly, I had prior commitments, but we did arrange to meet afterwards so Eirini could share what happened with me.

I don’t publish guest posts regularly anymore, but after this discussion I did invite Eirini to write up this session. If you’re interested in my ongoing work around neurodiversity/divergence in the PhD, you can join my research news mailing list here.

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My role as an Academic Development Advisor focuses on support of PhD students in Durham in a variety of academic areas, from ethnography to the philosophy of record keeping. During this work, I’d worked with neurodivergent PhD students and helped to put together a panel presentation at our annual PhD students’ conference to discuss the issues and imagine new ways forward:

The panel identified some key challenges for neurodivergent PhD folks:

• The need for support should first be justified by a formal diagnosis.
• Not every neurodivergent PhD students has/can have a formal diagnosis.
• There is a discrepancy between student and staff support, although both can be neurodivergent.
• PhD students are often positioned somewhere between student and staff. So, two different types of support are needed. In their role as PhD student, people need things like support with the Viva and other reasonable adjustments. When acting as teachers, people need help with organising and carrying out teaching.
• There is also definite need for more training for supervisors and support staff, particularly on individualised learning plans
• Need for support when teaching is in recess: PhD students operate on a 48 week year, but the rest of the university has another rhythm.
• Processes need to be less bureaucratic.

The requirement of a formal diagnosis can be the first, and most difficult barrier. Let’s talk theory first. The medicalization of neurodiversity often feels like a double-edged sword. On one side, it offers a path to understanding and support. On the flip side, it risks reducing the rich tapestry of human experience to a mere ‘condition.’ Neurodiversity/divergence isn’t a problem to be fixed; it’s a vital part of the mosaic of who we are.

And then there’s the practicalities. Access to diagnosis is a battlefield, where class, wealth, and yes, even gender, can dramatically skew the odds of receiving timely support. The journey to diagnosis is fraught with hurdles, leaving many to watch precious time slip through their fingers as they wait for the paperwork to ‘catch up’ with where they find themselves. This wait is further tangled in the web of debate over what even constitutes neurodiversity or neurodivergence. Take Obsessive Compulsive Disorder (OCD) as a prime example: Is it a distinct neurodivergence, reflecting a unique brain wiring, or an anxiety disorder nestled under the umbrella of mental health? Or both?

This conundrum has led many to turn to self-diagnosis not just as a stopgap, but as a vital tool for self-understanding and articulating their needs. Self-diagnosis offers a pivot away from a rigid, diagnosis-dependent model of support towards a more inclusive, needs-based approach.

What is a needs based approach? Imagine a world where the question isn’t “Do you have the paperwork?” but “How can we support your journey?” It’s a shift towards a model where support is not a locked door requiring the right key, but an open door, inviting all who need help to step through. It’s about ensuring that support is not only available but tailored, timely, and transformative.

Imagine a system that looks beyond the clinical coldness of medical diagnoses and sees the PhD student as a whole person. This is a system of support tailored not by a one-size-fits-all label, but by the nuanced needs of each individual. This is not just a dream; it’s a practical, inclusive method waiting to be embraced. It starts with the simple, yet profound, power of self-declaration of your own needs as a gateway to support.

And let’s be clear: this isn’t about undermining the value of a formal diagnosis. Far from it. Think of a needs based approach more as a complementary layer, adding richness and flexibility to the support we offer. It’s about making our system robust enough to adapt to the dynamic, ever-changing landscape of higher education. And about recognising that the support a student needs in their first year might look entirely different from what they need as they’re crossing the finish line.

This approach isn’t just a logistical change; it’s a cultural shift. It encourages a dialogue—a real, meaningful exchange—between PhD students, supervisors and the administrators in their institutions (and maybe even the governments that fund them). A needs based approach is all about moving from a static, one-time assessment to a dynamic, ongoing conversation about needs, aspirations, and support… isn’t that what learning and growth are all about?

We can start simply, by blending a needs based approach into our existing systems. Many institutions already have mechanisms for recording and responding to PhD student support needs, often anchored in medical documentation. Let’s expand this framework to include self-declaration forms, allowing students and staff to articulate their current challenges and support needs in their own words. Yes, the specifics might vary from one institution to another, and they will be shaped by existing procedures and policies. But the core principle remains the same: create a more responsive, empathetic, and ultimately effective support system

I hope this piece helps start a conversation on needs based approach to neurodiversity/divergence amongst PhD students to begin and, hopefully, flourish. Because both the panellists and I are working within UK H.E., the perspectives are inevitably related to the particularities of people’s home institutions. However, this is a discussion that can have an international scope as it incorporates local/regional relevance and experiences. As such, I would really like to hear from people about their own experiences, ideas, and contexts.

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Thanks Eirini! You can contact her on eirini.c.tzouma@durham.ac.uk

Anything but X! If you want to talk to me, find @thesiswhisperer on BlueSky, Mastodon, Linkedin, Facebook or Threads or go old skool and shoot me an email – details on my About page.

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