When Blaine was six he was diagnosed with dyspraxia. Then, as he neared the end of his time at his West Midlands primary school, the class teacher suggested that there might be a lot more going on. “Anything that disrupted his routine was an absolute nightmare,” says Joanne Terry of her son, who is now 14. “He was behind his peers by at least two or three years. His teacher could see when he was losing his concentration. So we decided to get an assessment for 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 should be assessed, which had a waiting list of around two years. Even if he was put through to the next stage, there would then be another long wait for an autism diagnosis. “I was having none of it – it was getting to the point where he would be moving on to secondary school, and I knew he needed help,” says Joanne.

Thanks to a Midlands-based charity called Caudwell Children, Blaine was offered an independent diagnosis, which sped things up. But then came another problem: the extra support he needed at school – one-to-one help in some lessons, physiotherapy, specially tailored chairs and writing aids – meant an application to their local council for an Education, Health and Care Plan (or EHCP) which would set out what would be delivered as a set of legal entitlements. But when Joanne applied to start the process, even though reports from some of the council’s own specialists seemed to strongly support her case, she was turned down.

By now, her son had started at his new school, with no dedicated help. “He was borderline self-harming,” she says. “He was pulling his eyebrows out individually, one by one and picking at the skin on his fingers. That was all due to his anxiety.” Joanne, meanwhile, was trying to push her way through endless layers of bureaucracy and paperwork. “It was horrendous,” she says. “It took over my life.” Blaine’s school was very supportive, but in the absence of any professional legal help, she concluded that they would only succeed if she gave up her job and devoted herself to the task full time.

Eventually, the national Send tribunal went in their favour. With the correct support in place, Blaine is now “absolutely thriving – he’s a completely different child”. Joanne, meanwhile, heads up his school’s Send parents group and gives advice to people going through the same process. “The worst thing about it is the vast majority of parents take the ‘no’ and don’t realise they can fight it,” she says. “They’re not given any information from the local authority apart from jargon in a letter, and their child ends up suffering.”

* * *

I have an autistic child with legally guaranteed school provision that had to be fought for, and I know huge numbers of parents who have had much the same experiences. What happened to Joanne and Blaine is an example both of longstanding problems in the special needs system and, more recently, a worsening financial crisis that seems to lead councils to simply refuse requests for special needs help, in a desperate attempt to keep down their costs.

Official figures show that, in some areas, the proportion of applications for an EHCP that are turned down currently runs at more than 40%. The proportion of appeals to the Send tribunal that are successful is put at 98%. The people the system says no to usually turn out to have an unanswerable case.

“We’ve got a situation where local authorities seem to be unable to meet their obligations to children and young people,” says Catriona Moore, the policy director at the charity Independent Provider of Special Education Advice (IPSEA). “But rather than going back to the government and saying, ‘Look, we have these obligations, we can’t do it, and these are the reasons why’, they’re passing the problem 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 skyrocketed: recent figures show that there has been a 72% increase over the past five years. Some of this is down to the Children and Families Act of 2014, which expanded the classification of special educational needs to include both preschoolers, and young people up to the age of 25. But there are other factors at work: 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 a model of education that is often based on “attainment”, conformity and old-fashioned discipline seems to be pushing neurodivergent kids out of mainstream settings altogether. This has been going on for a long time: between 2012 and 2019 the number of children with Send in English mainstream schools fell by a quarter, while the number attending special schools increased by nearly a third. In 2023, figures suggested that the share of Send pupils in secondary schools who were regularly absent was about 40%.

Speak to any Senco – or special needs co-ordinator – in a mainstream setting, and these are the kinds of urgent issues they talk about. Deborah, who speaks to me on the condition that I don’t use her surname, has done that job for 10 years at a secondary school in the north-west, where her local council is in serious financial trouble. How is the current situation compared with a decade ago? “It’s worse,” she says. “There’s just not enough funding. It’s getting harder to recruit enough support staff, and access to speech and language therapists and occupational therapists is a lot harder than it used to be.”

She talks about larger class sizes and a curriculum that leaves little time to “get to know your kids, and do pastoral stuff”. And there is a clear issue with children’s needs becoming more complex. “We’ve seen a huge increase in emotional-based school avoidance,” she says. “That’s partly come out of lockdown – where students have got used to being in a small, calm, quiet environment and then they’re coming back into school and finding social interactions difficult.” Not entirely surprisingly, she says those kids are often neurodivergent.

Meanwhile, need for extra help – which politicians tend to rebrand as “demand” – only increases. 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 also driven by advances in the understanding of physical and learning disabilities.

Outwardly, these are surely signs of social progress, but they demand both changes in education policy and increased public spending. National and local politicians tend to balk at any such suggestion; now, as increased Send spending feeds into many councils’ dire financial predicament, the Department for Education is working with some local authorities on so-called “safety valve” and “delivering better value” programmes that tend to be built around cuts to Send spending.

This leaves many families not just anxious and frustrated but increasingly looking for a way out of the system. Special Needs Jungle is the pre-eminent online community for people at the sharp end of Send provision. Its founder, Tania Tirraoro – who has two grown-up autistic children, and was herself diagnosed at the age of 46 – says that she senses a burgeoning shift. Up until recently, the most frequent search term on the site was “Senco”. These days, she says, it is “Eotas” the acronym that stands for “educated other than at school” and tends to involve forcing local councils to fund kids with special needs being home-educated.

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

For the foreseeable future, it seems, thousands of families will have to carry on as usual: struggling, fighting and waiting for change.

• This article was amended on 5 June 2024 to remove an incorrect reference to Wales from the subheading.