York children suffering from ‘catastrophic mental health’ and undergoing ‘huge meltdowns’ show that support services are not working for too many neurodivergent youngsters.
This finding is at the core of Listening to Neurodivergent Families in York, the latest report by Healthwatch York.
It brings together the experiences of those who have had difficulties accessing services and support in the city.
The report will be discussed at a City of York Council health board meeting tomorrow. The council is now working on a new neurodiversity strategy.
Manager of Healthwatch York Siân Balsom said the report was challenging to read due to the extremely difficult experiences York youngsters have faced.
Here are some of those experiences.
‘Catastrophic impact’ – Edward
Edward is nine. He he has autism, generalised anxiety disorder, obsessive compulsive disorder and post traumatic stress disorder, among other diagnoses.
Although he was academically high achieving in primary school, he had significant unmet needs which led to autistic burnout at the start of year 3.
He said: “I became too unwell to go to school. I tried to ask for simple accommodations from my teachers to be told my suggestions weren’t possible.
“My parents were told school would not support an application for an education, health and care plan and that we had to try different stages of support first but these accommodations were sadly too little too late
“The chronic masking had a catastrophic impact on my mental health leading to a complete loss of skills and being unable to function and complete basic tasks.
“I lost control of bodily functions and could not bring a cup of water to my mouth to drink without help when I was previously fully independent.
“I could also not leave the house for over a year and still struggle to talk about school even though I have been out of education for 19 months.”
Two burnouts – Oscar
Oscar went through primary school coping well, with small sensory differences that were dealt with by his parents and teachers.
On transition to secondary school he was placed in a form with no friends.
Oscar was sick several times on every school morning for two weeks.
His parents said: “We contacted his form tutor, house pastoral worker and special educational needs coordinator (SENCO) and were told we needed to practice ‘tough love’, he needed to develop resilience and we should ‘just get him in whatever that takes’.”
Oscar’s mental health deteriorated and he lost a lot of daily functioning skills.
“He masked up for school and exploded when he came through the door at home. It wasn’t until spring, when the early help team got involved and deemed school was the cause of Oscar’s distress and burnout, the GP signed Oscar off as too anxious to attend school.”
Things began to look up for Oscar after his autism assessment, and Year 9 saw him undergo one-to-one teaching at home. He then transitioned to one-to-one provision in school for his GSCE years. His attendance increased and he enjoyed being at school.
However, after a three year wait, he was diagnosed autistic by CAHMS and immediately discharged.
His one-to-one learning was no longer an option, and he was placed in a group with other autistic children, and new teachers, whom he didn’t know. This brought on a very rapid decline in his mental health, and a second burnout.
“An occupational therapist has recently explained to Oscar that he has memory loss regarding some of his life because of the trauma and that his brain has been in such a heightened state of anxiety for so long that it now perceives most things as a threat to his safety,” his parents said.
“Oscar hasn’t left the house since November 2021. He hasn’t been able to wear clothes for over a year and a half. We recently found out that adult social care had closed his case without informing us.”
Understanding remains low
Additional impacts that that the families have a shared with Healthwatch York include financial stress, exhaustion, trauma, and lack of support for neurodivergent young adults during their transition to adult services.
Some of the key findings of the report include:
- Societal awareness and understanding of neorodiversity is still low
- Parents experience stigma from family, friends and services
- Experiences are worsened by poor administration and communication from services
- Capacity in the system is overstretched, leaving many services looking for how to say “no” to providing a service
- Some schools are still not considering the needs of neurodivergent children at times of transition.
Here are some of the changes Healthwatch York wish to see:
- More research into neurodivergent-friendly school behaviour charters
- Improved administration and communication
- More training to improve understanding and awareness of neurodivergence, specifically pathological demand avoidance
- A clear sleep support pathway for York
- Clearer guidance around shared care agreements.
The report was produced in partnership with the Land, York Disability Rights Forum, York Carers Centre and Parent Carer Forum York
The Land in Haxby supports families of children with high anxiety, who struggle to leave their homes.
A spokesperson for the Land said that these changes are essential for neurodivergent children and their families: “The ability of these services to adapt and change will significantly determine a more positive and successful future and life for many neurodivergent children.
“This is vital in preventing ongoing trauma and anxiety to so many.”
‘Services are not working’
Healthwatch York manager Siân said: “The current services and support are not working for too many people in York.
“We’re delighted to see that City of York Council are developing a strategy.
“This is desperately needed, and we hope that our report and the experiences of everyone we heard from will help to shape something that will transform the lives of the city’s neurodivergent children, young people and their families.”
Sarah Coltman-Lovell, York NHS place director, said, “Moving forward the Integrated Care Board is committed to building sustainable and equitable services, balancing diagnostic capacity with appropriate support and ensuring that the right interventions are in place across the system.
“This demands careful planning, collaboration and a long-term strategy. We are working with both regional and national teams to address the demand for autism and ADHD services, while our mental health, autism and learning disability collaborative drives pathway improvements.”
The report will be discussed at the York Health and Wellbeing Board meeting tomorrow (Wednesday).
A copy of the report, including partner statements from YDRF and York Carers Centre, can be found here.