“It’s blooming now; another child’: the struggle to educate neurodivergent students

WWhen Blaine was six, he was diagnosed with dyspraxia. As he neared the end of his time at West Midlands primary school, the class teacher suggested there might be a lot more going on. “Anything that disrupted his routine was an absolute nightmare,” Joanne Terry says of her son, now 14. ‘He was at least two or three years behind his peers. His teacher could tell when he was losing concentration. That is why we decided to conduct research into autism.”

That was the beginning of a kind of Kafkaesque saga that will be familiar to hundreds of thousands of families in England whose lives involve both neurodivergence and the world of special educational needs and disabilities, or Send.

There was an initial assessment process that would decide whether Blaine needed to be assessed, for which there was an approximately two-year waiting list. Even if he were moved to the next stage, an autism diagnosis would still be a long wait. “I wasn’t having any of it – it got to the point where he was going to go to high school, and I knew he needed help,” Joanne says.

Thanks to a Midlands-based charity called Caudwell children, Blaine was offered an independent diagnosis, which accelerated things. But then there was another problem: the extra support he needed at school – individual help with some lessons, physiotherapy, specially tailored chairs and writing aids – meant an application to the municipality for an Education, Health and Care Plan ( or EHCP), which would set out what would be provided as a set of legal rights. But when Joanne applied to start the process, she was rejected, even though reports from some of the council’s specialists seemed to strongly support her case.

Her son had now started at his new school, without any special help. “He was on the verge of self-harm,” she says. “He raised his eyebrows one by one and picked at the skin of his fingers. It was all because of his fear.” Meanwhile, Joanne tried to navigate her way through endless layers of bureaucracy and paperwork. “It was horrible,” she says. “It has taken over my life.” Blaine’s school was very supportive, but in the absence of any professional legal help, she came to the conclusion that this would only work if she quit her job and devoted herself to the task full-time.

Ultimately, the national Send tribunal ruled in their favor. With the right support, Blaine is now “absolutely thriving – he is a completely different child”. Joanne, meanwhile, leads the Send Parents group at his school and provides advice to people going through the same process. “The worst part is that the vast majority of parents accept the ‘no’ and don’t realize they can fight it,” she says. “They don’t get any information from the local government, apart from jargon in a letter, and their child ultimately suffers as a result.”

I I have an autistic child with a legally guaranteed school provision that had to be fought for, and I know large numbers of parents who have had much the same experiences. What happened to Joanne and Blaine is an example of long-standing problems in the special needs system and, more recently, of a worsening financial crisis that appears to be leading municipalities to simply refuse requests for special needs assistance, in a desperate attempt to keep their costs down. .

Official figures show that in some areas the share of applications for an EHCP declaration is very high turned down is currently over 40%. The percentage of appeals to the Send Tribunal that are successful is set at 98%. The people to whom the system says no usually turn out to have an unanswerable case.

“We have a situation where local authorities appear unable to meet their obligations to children and young people,” said Catriona Moore, director of policy at the charity. Independent provider of special education advice (IPSEA). “But instead of going back to the government and saying, ‘Look, we have these obligations, we can’t do it, and these are the reasons why’, they pass the problem on to children and young people and their families. creating an environment where it becomes very difficult to navigate the system – to be persistent enough to get what children need.”

The number of children and young people with EHCPs has increased dramatically: recent figures show that there is one 72% increase in the past five years. Part of this is due to the Children and Families Act 2014, which extended the classification of special educational needs to include both preschoolers and young people up to 25 years of age. But there are other factors at play: an ongoing shortage of teaching assistants means that ad hoc support is often impossible to get, and children’s problems sometimes escalate to the point that an EHCP becomes the only option.

At the same time, the English school system’s embrace of an educational model often based on ‘performance’, conformity and old-fashioned discipline appears to be pushing neurodivergent children out of mainstream environments altogether. This has been going on for a long time: between 2012 and 2019, the number of children with Send in regular schools taught in English dropped by a quarter, while the number attending special schools has increased by almost a third. By 2023, figures suggested that the proportion of Send pupils in secondary schools who were regularly absent was approximately 40%.

Talk to a Senco – or special needs coordinator – in a regular setting, and these are the kinds of pressing issues they talk about. Deborah, who will speak to me on the condition that I do not use her last name, did that work for ten years at a high school in the northwest, where her municipality is in serious financial trouble. How is the current situation compared to ten years ago? “It’s even worse,” she says. “There’s just not enough money. It is becoming increasingly difficult to recruit sufficient support staff and access to speech and occupational therapists is a lot more difficult than before.”

She talks about larger class sizes and a curriculum that leaves little time to “get to know your children and do pastoral things.” And there is a clear problem: children’s needs are becoming increasingly complex. “We’ve seen a huge increase in school avoidance based on emotions,” she says. “That partly comes from the lockdown – where students are used to being in a small, quiet, quiet environment and then come back to school and find social interactions difficult.” Not surprisingly, she says these children are often neurodivergent.

Meanwhile, the need for extra help – which politicians often describe as ‘demand’ – is only increasing. The fact that we know more about autism, not least among girls, means that more people are asking for diagnoses and school support, an increase that is also driven by advances in the understanding of physical and learning disabilities.

Outwardly, these are certainly signs of social progress, but they require both changes in education policy and increased government spending. National and local politicians tend to reject such suggestions; Now that the increased expenditure for Send is contributing to the difficult financial situation of many municipalities, the Ministry of Education is doing the same cooperate with some local authorities on the so-called ‘safety valve’ and ‘delivering better value’ programs that are usually built around cuts in healthcare spending.

This means that many families not only become anxious and frustrated, but also increasingly look for a way out of the system. Jungle with special needs is the online community par excellence for people at the sharp end of the Send offering. Its founder, Tania Tirraoro – who has two adult autistic children and was diagnosed herself at the age of 46 – says she senses a nascent shift. Until recently, the most common search term on the site was ‘Senco’. Today, she says, this is ‘Eotas’, the acronym that stands for ‘educated differently than at school’, forcing local councils to fund children with special needs to be home-schooled.

As we head towards an election, all this begs the question: if a Labor government is elected, will things get better? “They’ve talked about early intervention – and yes, of course everyone wants that,” says Moore. “You also hear a lot about ‘greater inclusivity’; Everyone wants that too, if it’s done right. But those are slogans, not policies.”

It seems that for the foreseeable future, thousands of families will have to continue as usual: struggling, fighting and waiting for change.