Failing a generation: inside the battle for neurodevelopmental diagnosis and support
Children and young people across the UK are waiting years for assessment for neurodevelopmental disorders such as autism, dyslexia or attention deficit hyperactivity disorder (ADHD).
All parents worry when they send their children to school for the first time. They worry about them making friends or finding their coat peg—but for most children, those worries are fleeting. Yet if you are the parent of a disabled child, you leave the school gate every day, your heart weighing heavily in your chest as if it’s going to explode, wondering if they will cope and make it through that day.
The reality is, most parents and carers of disabled children do not know what their diagnosis is for months, even years at a time. They just have an inkling, a feeling something is wrong, and live under the mental torture of not knowing for certain, with barriers at every turn.
As a parent of a disabled kid myself, I have found the whole process emotionally traumatic. It is a constant battle with authorities, most of whom have never even met your child, in order for them to acknowledge that your kid needs support and deserves to access proper education. I have been told that my child “may develop the skills” needed to cope in a class of 30 children without full-time support—that’s like telling someone with a physical disability that they may develop the skills to walk up a flight of stairs when they are clearly unable to. Children with neurodevelopmental disabilities are often overlooked by society because, somehow, they are still invisible.
Neurodevelopmental disorders are disabilities in the functioning of the brain which can affect the ability to learn as well as to regulate emotions and memory across a lifetime. In April 2008, Wales was considered a trailblazer after it published the ASD Strategic Action Plan, making it one of the first of the nations of the UK to propose a national strategy for meeting the needs of autistic individuals. Now in 2021, children across Wales are waiting two years for an autism assessment despite a set target of six months.
Neurodevelopmental diagnosis is assessed across the country by each individual’s local health authority. Before COVID-19 hit, the North Wales region had a 24-month waiting list for children on the autism pathway. During the pandemic, Screen Shot received information from the service stating that children at the top part of the waiting list were being referred for assessment to private psychologists and providers in the North Wales and North of England regions. We have been told at every turn that there is no support by numerous professionals. It seems as if the service has just ceased to exist there, which only made me question whether this was happening across the UK too.
It is unsurprising that parents, carers and their own children are being pushed to breaking point, and experiencing devastating mental health trauma waiting literally years for a crucial first appointment. This does not include the actual assessment process itself, which is known for being rigorous and prolonged, going through a multi-disciplinary team of health professionals before the crucial diagnosis (which is not always guaranteed). There are health boards within the UK that are not accepting referrals for under-fives, despite the importance of early intervention being in The National Strategy for Autistic Children, Young People and Adults: 2021 to 2026. Instead, there is a postcode lottery across local educational authorities and health boards.
The impact of a delayed diagnosis
A delay in diagnosis affects a child’s access to education, leading many kids to be labelled as ‘naughty’ in the classroom when they are in fact disabled and cannot cope in that environment. A huge amount of stress is being placed on families as well as on the child processing how they fit in the world and why they experience things differently from others. It is estimated that 70 per cent of people with autism have a co-occurring mental health condition. Anxiety disorders occur in 42 per cent of autistic children compared to their neurotypical peers. Sadly, undiagnosed autistic children often are referred to Children and Adolescent Mental Health Services (CAMHS), another service that is currently facing a peak in demand.
The recent increase in diagnoses indicates that people are progressively more aware of neurodevelopmental disabilities across the population compared to twenty years ago when only 3,072 patients had a diagnosis of autism recorded in England, and 65,665 in 2018. A study conducted by the University of Exeter showed that, currently, 9 million people are undergoing autism diagnosis in the UK, however, this does not mean that children are receiving the early diagnosis and intervention they deserve.
Private diagnosis has increasingly become an option for many families who are desperate for answers and, more than anything, support. The diagnosis process for children can be complex, meaning that many children are not being diagnosed early enough, and even when they do, they are at the mercy of their local education authorities’ increasingly selective Special educational needs and disability (SEND) budgets, which again differs across the country.
Special school places or units attached to schools are hard to come by for most families who have a child with a neurodevelopmental disability, as you first need a diagnosis made through the NHS in order to secure a place in most specialist settings. Many children with neurodevelopmental disorders are placed in inappropriate educational settings in mainstream schools, crammed into a class of 30 children, without a full-time one-to-one teacher to help them cope with transitions and sensory overload throughout the day. Their human right to an education is being denied as they cannot access an education that is suitable for them.
Real life experiences and “getting results through the post”
Michelle Crook’s battle for diagnosis started when her son was seven years old. He is now 16 with autism, PDA (pathological demand avoidance) and dyspraxia. She waited six years before seeking a private diagnosis and is based in Lancashire. She told Screen Shot how she felt about the process: “[It was] horrific. My son was suicidal and my partner and I almost ended our relationship—we lost friends and family due to them not understanding or being supportive.” Commenting on service delivery in her area, she described the process, “It’s awful—we went through five paediatricians and East Lancashire Child and Adolescent Services twice along with testing for ADHD.” She went on, “There was zero support at the start. We were told to attend parenting classes, yet during the NHS process, we had no support. After diagnosis there was, again, no support. We have had to find our own way of living with the diagnosis, doing our own research and finding our own strategies and [figuring out] how to make them work for us.”
Aimee Megitt, based in Hull, has a four-year-old son with a rare CTNNB1 syndrome, who was on the waiting list for diagnosis for three years. She described her experience as “very frustrating—getting support for a disabled child without any diagnosis is so hard. It’s a huge fight for anything and so unfair.” She went on to describe the shocking service delivery, “Pretty poor. Everything was done by email because of COVID. Getting results through the post of a very rare syndrome was hard because I had no one to give me any advice or answers.”
After receiving the letter in the post, Megitt did not get much support, “We had one meeting and were given a leaflet.” Understandably, she shared with Screen Shot that she does not feel “heard” by the service in her area, “George’s syndrome is so rare even the doctors don’t know much about it. I have to get support from people who don’t live in the country and do my own research to find parents of kids with the same syndrome.”
Lisa from Norfolk has a four-year-old child who has chromosome deletion and epilepsy. They have received no support and have been on the waiting list since 2020. Lisa told us they have found the whole experience “draining.”
Local education authorities are prioritising financial budgets rather than supporting disabled children in their education and the support they are being given at school. I know this from my own experience with Gwynedd Council which recently refused to give my child full-time support in a mainstream setting, despite having a diagnosis and a clear recommendation from health professionals for a full-time one-to-one.
Disabled children are legally entitled to receive educational support for them to have equal opportunities to learn, yet authorities are stalling and sending parents to appeal and tribunal as they refuse to fully assess disabled children. Kids are left without the full support package they need to reach their potential, which in turn affects their future lives and mental health. Local authorities are not assessing the children’s needs within educational settings, despite them having additional learning needs and disabilities. Even in educational support, one-to-one budgets and special school places are limited early, not meeting the criteria for kids with disabilities or additional learning needs. Regardless of SEND budgets, this is illegal.
We are currently standing at the precipice of a mental health disaster while a generation of disabled children are not being given the diagnosis and educational opportunities they deserve. As waiting lists continue to grow to record levels, it is clear that the current neurodevelopmental system of our country is failing both children and their families. The negligence to diagnose condemns another generation of disabled children to a life of mental disorder and poor life expectancy. Children are in great distress in classrooms across the country right now, desperate for someone to understand and support them—desperate not to be labelled the ‘misbehaving child’. The most vulnerable people in our society deserve to be protected and their families supported but, sadly, this is still far from the case.
