Listening Differently: What Autistic Children, Young People, and Those with Intellectual Disabilities Taught Us About Mental Health Support
Standing beside my poster at the 27th IACAPAP World Congress in Hamburg, I found myself reflecting on why I do this work.
As researchers, clinicians, and academics, we often spend time discussing systems, services, pathways, and interventions. These conversations matter. But the more I navigate research and academia, the more I find myself anchored back to the communities where people are living these experiences every day.
The children, young people, and families who generously shared their stories in this research reminded me of something simple but powerful: if we want to improve mental health support, we need to listen differently.
One story has stayed with me.
Imagine a child tells a doctor they are struggling.
The doctor replies:
“You’re fine. Go back to sleep”
The child stops asking for help.
This wasn’t taken from a clinical record. It came from one of the stories shared by a child participating in our research.
That story raises an important question.
What happens when children communicate distress in ways we are not expecting? And what happens when the systems around them are not equipped to hear it?
Why this research matters
We know that autistic children and young people, and those with intellectual disabilities, experience significantly higher rates of anxiety, depression, and emotional distress than their peers.
Yet many continue to face barriers when trying to access mental health support.
Research has highlighted long waiting times, fragmented services, and difficulties accessing appropriate care. However, much of what we know comes from parent reports, professional observations, or clinical records.
The voices of children and young people themselves are often missing, particularly those who communicate differently.
As both a researcher and clinician, this gap felt important.
If we are serious about developing person-centred services, then the people using those services must be part of the conversation.
Listening in different ways
The aim of our study was to explore the experiences and needs of autistic children and young people, children and young people with intellectual disabilities, and their parents when seeking and receiving mental health support.
But we also wanted to address a challenge that researchers often face.
Traditional interviews do not work for everyone.
If our methods exclude some children from participating, then whose voices are we hearing?
To address this, we recruited 19 participants across England, including autistic children and young people, some with co-occurring intellectual disabilities, aged 5–16 years and parents.
Parents participated in narrative interviews exploring their journeys through mental health services.
For children, we took a different approach.
Using creative narrative story stems, we invited children to continue fictional stories through drawings, figurines, emotion prompts, and imaginative play.
Rather than asking direct questions about mental health, we created opportunities for children to communicate experiences in ways that aligned with their interests, strengths, and communication styles.
What emerged from these stories was both powerful and insightful.
What families told us
One of the strongest themes was diagnostic overshadowing.
Many parents described situations where their child’s emotional distress was attributed to autism rather than recognised as a mental health need.
As one parent explained:
“Doctors kept saying we can’t help because she’s autistic, or it’s not mental health, it’s autism. But autism and mental health are not mutually exclusive”
Families spoke about referral rejections, long waits, and services that often felt disconnected from one another.
Many described feeling caught between systems, repeatedly advocating for support while trying to manage their child’s distress.
What became clear was that barriers to care were not only affecting children and young people.
They were affecting entire families.
Parents spoke about exhaustion, isolation, and the emotional burden of constantly having to fight to be heard.
What children told us
The children communicated many of the same challenges, but often in very different ways.
Rather than describing barriers through clinical language, they expressed them through stories.
One child created a character called Bob.
When Bob went to the doctor for help, he was told:
“You’re fine. Go back to sleep”
After that experience, Bob avoided returning and tried to escape situations that felt unsafe.
Through a fictional character, this child communicated feelings of dismissal, avoidance, and not being understood.
What struck me most was that these stories revealed experiences that may never have emerged through traditional interviews.
The problem was not that children could not communicate.
The problem was that we were not always listening in ways that enabled them to communicate.
What good support looked like
Amid the challenges, there were also stories of hope.
Across both parent and child narratives, positive experiences were consistently relational.
When professionals listened, adapted their communication, showed understanding, and built trust, children engaged more positively with support.
One child described a helper who listened and supported them through difficult emotions.
As the story came to an end, the child simply said:
“It’s calm and peaceful now. The helper listens”
Those words capture something fundamental.
Feeling understood mattered just as much as the support itself.
The message I am taking forward
Across all of the narratives, one message stood out.
Access to mental health support is not only about whether services exist.
It is about recognition.
Recognition of emotional distress.
Recognition of communication differences.
Recognition that autism, intellectual disabilities, and mental health are interconnected rather than separate.
This research also demonstrated the value of creative and flexible approaches that enable children and young people to participate meaningfully in research and service development.
Too often, we assume that some voices are difficult to access.
What this study taught me is that those voices are there.
We simply need to create the conditions for them to be heard.
As I left Hamburg after presenting this work, I found myself returning to the same thought that has guided much of my research and clinical practice.
Perhaps the issue was never that children and young people could not tell us what they needed.
Perhaps the issue was that we were only listening for it in one way.
When we create space for stories, play, imagination, and different forms of communication, children and young people tell us remarkable things.
Their message is clear:
Listen to us.
Understand us.
Adapt to us.
Because when we change how we listen, we change what becomes possible in mental health care.
View the co-designed animated findings from this study below.
