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As the mother of a child with ADHD, Toni Cooper knows all about the importance of getting early support as well as the complexities of the disorder.
With ADHD referrals to the Child and Adolescent Mental Health Service increasing by 686% between 2020 and 2022, and Autism referrals increasing by 276%, the Government is also all too aware that it has an issue to address.
It has acted by appointing Mrs Cooper head of a new ‘Neurodevelopmental Service’ within CAMHS to help children and parents to firstly get the right diagnosis and then access the right services.
Express spoke to her about the new service, and how her family navigated ADHD diagnosis and support...
The new service also reflects an evolution in thinking around ‘neurodiversity’ – the concept that no two brains are the same and having an atypical view of the world is not an abnormality but something that needs to be understood, supported and even celebrated.
Despite the shift, it is widely accepted that stigma still exists, as does the view that medication is the only answer. Mrs Cooper’s own experience is that while medication has its place, it will only work for some people.
The new Neurodevelopmental Service launched in the spring and Mrs Cooper has been busy developing services, courses and building relationships with schools and other agencies to form multidisciplinary teams.
She was previously a Senior Youth Worker and Team Leader in the Youth Service.
With her own now-11-year-old son diagnosed with ADHD when he was eight, Mrs Cooper also founded ‘We Believe You Belong’ – a support service for parents and carers of children with the disorder.
The role of the new service is to provide immediate support at the point of referral, which is usually made by a GP or Special Educational Needs Coordinator. It also aims to reduce waiting times for diagnostic assessments, and work with children, families and professionals to provide joined-up, post-diagnosis support.
She said: “The help was there before but I don’t think people were necessarily aware of the processes you go down. There is a lot more understanding about autism, I think, than there is in other areas. It is about making sure we grow that education and being able to detect if we think something is going on with a child.
“Before, people were put into boxes; now we are more accepting of neurodiversity. We have recognised that there is no ‘one-size-fits-all’. No one has the same brain in the same way that no one has the same colour eyes."
"I know exactly how challenging it can be to get the support you need"
She continued: “The service is about people recognising and understanding their brains and their own needs in order to reach their full potential. A lot of children who are neurodiverse feel as though they don’t belong in our neurotypical world.
"We need to make sure we are providing them with opportunities to feel as though they do belong, because they do.”
She added: “I know exactly how challenging it can be to get the support you need after a diagnosis: neurodiversity is complex, and each child and young person needs tailored support. I am enjoying combining my personal and professional experience to support other families.”
Practical changes being made by Mrs Cooper and her new team include introducing dual assessments for both ADHD and autism, which used to be assessed separately; and holding surgeries, where families can come in and create their own self-care plan for their child or talk about issues which concern them.
Other changes include developing self-care plans that incorporate services beyond CAMHS, launching a group to allow children to voice how they think the service should develop, and delivering a course for siblings of neurodiverse children in collaboration with the Youth Service.
Asked what she would define as ‘success’ for the new service, she said: “It would be islanders understanding themselves and/or their child, and feeling supported and not isolated. Children need to understand who they are and feel safe in themselves - and for the wider world to understand who they are, too.”
She added: “Early intervention is the key. If I look at my boy, if we had picked this up when I was getting pulled into his classroom at the age of three, we wouldn’t have got to where we were.
"We got to a stage where he felt that he didn’t belong in the world, at aged eight.
“If we’d have known more about ADHD then, rather than it just being ‘hyperactive children’ – and it’s way more complex than that – then I would have probably picked that up. But I didn’t and I kept questioning things but never getting an answer."
“If you look at the statistics, we are looking at a quarter of the population being neurodiverse – and I have traits, no doubt," Mrs Cooper continued.
"It is about celebrating that and using those strengths.
"If we recognised everyone’s strengths rather than focusing on the negatives, we could be a really powerful force moving forward, as an island.”
In 2020, there were 51 ADHD-related referrals to CAMHS, but this had increased to 350 last year. Autism referrals grew from 81 to 224 over the same period.
Mrs Cooper said: “There is a lot of research being done on why we have seen a huge increase in referrals. It could be because we are more accepting of diversity and understanding ourselves.
“There is also better recognition within schools and early childcare providers, maybe influenced by social media and the news. We are much more open about speaking about ourselves, and our struggles as well as our strengths.
“More adults are also recognising the signs and symptoms, and better understanding why they perhaps can’t sit and concentrate, always lose their keys or have sensory issues. For some people, that diagnosis is life changing because they have been living in a neurotypical world which hasn’t been designed for them.”
She added: “From my own personal experience, as soon as you recognise those traits, you should be able to access support from that moment.
"If there is a waiting list, you cannot simply turn off your neurodiversity for six months until your appointment.
“We are planning our new service so we will be able to provide that much-needed support for children from the moment it is required.”
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