Rethinking Sleep Support with Autistic Young People

Sleep isn’t just a health issue—it’s a human one. And for many autistic young people, getting a good night’s rest is anything but simple. But what if the key to better sleep isn't mainstream sleep hygiene rules but a more personalised approach?

That’s the heart of Dr Georgia Pavlopoulou’s research at UCL and GRRAND (Group for Research in Relationships and Neurodiversity). Her work brought together autistic young people, families, and clinicians to co-design meaningful support around one of the most overlooked yet critical aspects of wellbeing: sleep.

“What Does a Good Night’s Sleep Feel Like—for Me?”

This project started by asking a powerful question: What does sleep feel like for autistic adolescents themselves?

The project involved working collaboratively with 54 autistic adolescents to co-produce a study using a novel photo elicitation methodology, during which participants collected images. drawings and photos before the interviews to stimulate discussion and help capture participants' thoughts and feelings.

See an overview of phases (Pavlopoulou, 2021)

Phase 1: Advisory Research Piloting

  • Formation of an Advisory Group (N = 6).

  • Discussed study objectives, research design, procedures, and tools.

  • Identified potential practices and audiences for community engagement.

  • Developed photo-taking tasks and piloted them.

  • Added verbal and non-verbal tasks (e.g., visuals, objects) to make interviews more inclusive.

Phase 2: Recruitment

  • Recruited participants through charities, social media, and local community support centers.

  • Obtained informed consent from adolescents and their parents.

  • Provided training on the ethics of photography.

Phase 3: Participant-Driven Data Collection

Each adolescent was asked to take 10–15 photos and keep notes or drawings for one week about:

  1. The place they sleep and its surroundings.

  2. Activities or objects related to their sleep habits.

  3. Situations or people that affect their ability to fall or stay asleep.

  4. Objects, people, or drawings that represent bedtime thoughts.

  5. Photos or actions that show how they feel or think about sleep.

Phase 4: Participant-Driven Coding

  • Individual interviews followed the "SHOWED" protocol:

    • What do you See?

    • What is Happening?

    • How does this relate to Our lives?

    • Why does this problem/strength Exist?

    • How can this photo Educate others?

    • What can we Do about it?

  • Participants helped interpret and codify their own photos and narratives.

Phase 5: Advisory Group Event Preparation

  • Selected exhibition themes from emerging data.

  • Created PowerPoint slides and collages with participant photos and post-it notes.

  • Designed creative boards to identify stakeholder needs and action points.

Phase 6: Community Event – Open Sleep Day

  • Hosted a community exhibition to share study results and promote action.

  • Included:

    • Panel discussions with parents, school staff, psychologists, and autistic individuals.

    • Two creative science workshops with local students.

    • A critical workshop with families, researchers, and community partners.

    • Creative boards to gather stakeholder feedback and actions.

The participants reflected on their experiences with healthcare practitioners, who often try to impose mainstream sleep hygiene rules (like no screen use before bed). These can be experienced as one more pressure to comply with mainstream rules written by, and for, non-autistic people. Instead, the young people wanted to have the chance to co-create a personalised set of sleep habits. These may include daytime activities that increase predictability, flexibility to achieve sensory comfort, and activities, relationships and objects that promote a sense of worth.

Real Change in Real Places

These findings didn’t stay in the lab. The resources shaped training for over 4,800 professionals via the National Autism Trainer Programme and were shared through NHS services, schools, and national autism networks.

Clinicians, school staff and students in Kent took initiatives to support us to translate data into material for pediatricians, clinicians and young people themselves. 

Building on the initial research findings, the Emotional Wellbeing Team and Dr Georgia Pavlopoulou worked with a group of autistic young people at Rowhill school to turn the findings into an accessible suite of information designed specifically for autistic young people, their families, schools and practitioners. 

As Dr Virginia Lumsden, a collaborating psychologist, put it:

“This work gave us the evidence—and the confidence—to move away from one-size-fits-all advice and build genuinely personalised support.”

“We are delighted to be part of this project where we take findings from Dr Georgia Pavlopoulou’s brilliant co-produced research about autistic young people’s experience of sleep and find a way to increase the impact of these findings.

The process has taken the research full circle – from listening to autistic young people’s real-life experiences as part of the original research, to collaborating with autistic young people in one of our schools to understand their responses to the research, and then for these same young people to work alongside a team of creative professionals to find a way to create resources that will enable the key messages from the research to be shared far and wide to the benefit of as many autistic young people and their families as possible.”

This way of working is co-produced, evidence-based practice at its best. It is multi-disciplinary, multi-agency, collaborative and creative. We have all been learning every step of the way, and I am confident that the finished product will be a valuable resource with the potential make a positive difference to autistic young people and their families.”

Discovery Through Co-Creation

From these insights, the research blossomed into something bigger. Autistic young people didn’t just take part—they led the creation of new resources: self-reflection tools, sleep-friendly music videos, and even educational leaflets for professionals and families.

They weren’t just helping others understand autism and sleep. They were transforming the conversation entirely—from “fixing problems” to “supporting people.”

Their work is now feat on NELFT website and many clinical teams use the leaflets they created inspired by our research.  

What Practitioners and Families Are Learning

Professionals and families alike are discovering that supporting better sleep for autistic young people is not about enforcing the “right” habits—it’s about asking the right questions. About trust. Comfort. Choice. And, most importantly, being kind to your senses.

As one participant described, “For the first time, someone asked me what helps me sleep—not what I was doing wrong.”

Want to learn more or use the resources created?
You can find the materials from this research—including videos and sleep planning tools—featured in NHS guidance and shared via The Sleep Charity and the National Autistic Society. You can also download leaflets here: https://discovery.ucl.ac.uk/id/eprint/10145180/

We receive many messages from professionals and families. Knowing that the paper resonated with many and supported real understanding is exactly why we do this work.
These stories remind us that research is not just data — it’s a lifeline when it’s grounded in real-world struggles and co-produced perspectives.