Posted on: 23 June 2023
Brunel University hosted CNWL's Year of the Child Conference (23 June 2023); exploring neurodiversity in children and young people.
Chaired by Hayel Watermberg, Co-Founder and Managing Director at Word on the Curb, it was a chance for children’s services from across the Trust to come together to share best practice and reflect on how they can improve the care they deliver.
Claire Murdoch, CNWL Chief Executive, opened the conference by speaking about how the Year of the Child was born out of Covid – a time when healthcare focussed more on older people.
"People were still having babies,” she said. “But they didn’t have access to the usual socialisation and support.
“Youngsters were missing school and their normal routines were being severely disrupted.
“So I just want to thank everyone in this room for continuing to offer this vital support to children, young people and, of course, their parents and families.”
Attendees watched a short film that gave an overview of the Camden Child Development Team, outlining what support is available to children, young people and their families within CNWL.
Georgia Griffin, Lead Occupational Therapist at Lavender Walk (a mental health unit for young people) spoke about the development of a sensory room for patients who were finding the hospital overwhelming.
"Feedback has been incredibly positive," she said.
It was important that staff are fully trained and confident using the tools in the sensory room, and they were invited to use an ‘autism reality experience’ machine, that puts the user into the shoes of someone with sensory problems.
We then heard from Karen and Emma, from the Community Paediatrics Team in Milton Keynes, who explained how they improved pathways for children to reduce wait times.
You can read more about the project here. The results have been so stark and so positive that the team has been shortlisted for an HSJ Patient Safety Award.
Ian Hall, Neurodevelopmental Specialist Crisis Practitioner for the CAMHS Urgent Care Team then gave an insight into supporting people with autism in crisis at A&E.
Ian said that a lot of the people he sees are young women who have a late autism diagnosis and who have suffered some sort of trauma or abuse.
“The world it’s set up by neurotypical people and that makes it very difficult or neurodiverse people,” he said. “It’s like being left-handed in a right-handed world.”
He’d like to see more, better-funded services so neurodiverse people can be discharged from A&E faster and more safely.
Maddy Burnet and Marwa Sediq from Ealing Community Partners spoke about being neurodivergent in the workplace.
Using their own lived experience, they raised the point that neurodiversity doesn’t stop once you reach adulthood and so the treatment available also shouldn’t stop.
They set up a neurodiversity group within their team for all type of neurodiverse people to get together to discuss strategies, obstacles and experiences, as well as sharing useful resources.
The Conference’s keynote speech was given by Professor Francesca Happe, Professor of Cognitive Neuroscience at King’s College London, who spoke about girls and women on the autistic spectrum.
She busted some myths about autism in females and highlighted the fact that thousands of women and girls are either misdiagnosed or not diagnosed at all.
Indeed, girls are on average diagnosed later than boys and often only because they are showing other ‘red flag’ behaviours.
But why is this?
Professor Happe explained that there is a deep-seeded unconscious bias in society that means people tend to attribute some social behaviours in boys to autism, whereas in girls they might assume it is social anxiety, shyness or depression.
Not to mention the fact that much of the early research into autism was conducted exclusively on males.
Healthcare as a whole has started to correct this trend and there are now more diagnoses in girls than boys. However, Professor Happe stresses that this is us “catching up” with previous misdiagnoses, rather than us now over diagnosing girls.
Looking to the future, she would like to see more of a focus on diagnosing vulnerable women and research into the autistic experience of things like pregnancy and the menopause.
We were then joined by Aimee Taylor, an 18-year-old service user at Harrow CAMHS who was recently diagnosed late with ASD (Autism spectrum disorder) and generalised anxiety.
She spoke passionately and with great humour about her experiences with mental health and how her friends experienced very different pathways to her own.
“After going to 25 cognitive behavioural therapy sessions with no results, I was finally referred to a psychotherapist,” she explained.
“She was so real. She helped me realise so many things and suggested that I wasn’t allowing myself to feel my emotions because I was trying to hide my ASD.”
After lunch, attendees split into the following breakout rooms:
- Communication and neurodiversity
- Introduction to neurodiversity
- Neurodiversity and assessment pathways
- Developmental trauma and neurodiversity
The conference was closed by CNWL's Chief Operating Officer, Graeme Caul, who said:
“People don’t often think of CNWL as being famous for children’s services, but I see such expertise in front of me. And we can use this expertise to further Year of the Child.
“Think about what you can take away from the day and take back to your teams. Think about how we can promote community and help staff and the community work together.”
