Here’s a figure for you: 787 per cent. That’s how much the number of autism diagnoses has increased in the past 20 years, according to researchers at the University of Exeter.
Their research, published in August, compared the number of autism diagnoses recorded in GP records in England between 1998 and 2018 out of a sample of more than 9 million patients. It was the first study to analyse the time trend of autism diagnosis in a population-based UK clinical cohort by developmental stage, level of severity and gender over a 20-year period.
To give an idea of what that 787 per cent jump looks like in human terms: in 2008, 3,072 of these patients were diagnosed with autism. But in 2018, 65,665 patients were diagnosed.
It’s a staggering increase, and one that has been echoed in schools. Statistics from the Department for Education - covering the whole of the school system - show that the number of pupils with autism as their primary special educational need rose from 50,000 in 2009 to around 163,000 in 2020-21. You may have even seen this shift playing out in your own classroom.
But what is causing the rise? The picture behind the figures is extremely nuanced says Ginny Russell, the lead author on the University of Exeter research.
The results show that adults and females of all ages had the steepest increase in diagnosis. One reason for this might be the destigmatisation of the label “autistic” in recent years, Russell suggests - a shift that advocacy groups, the neurodiversity movement and social media have all contributed to.
Alongside this destigmatisation, she adds, there have also been changes in diagnostic practice. In the past 20 years, the boundaries for autism diagnosis have shifted to include less severe traits. Naturally, this has led to greater numbers of people being diagnosed.
“There are so many different types of people now included in this category - there is such variation,” says Russell. “People with autism can be non-verbal and have difficulties with basic functional tasks such as dressing, eating, washing and need residential care, through to people who do PhDs and might have idiosyncratic language and difficulty with social life but are highly successful.”
It’s likely that the boundaries for diagnosis may move even further in coming years. The diagnostic criteria for autism spectrum disorder (ASD) are reviewed regularly to include the latest evidence, Russell says. For instance, it’s expected that the criteria will soon be updated to better reflect the symptoms that autistic girls present with. And while such changes are important, the expansion of the category also comes with problems, she points out.
“It’s so widely applied that the diagnosis loses its usefulness in terms of being able to help people and use it to identify what their needs might be,” Russell says.
This is not the only challenge. The study also shows that the age of diagnosis in infancy and childhood has risen, which the authors partly attribute to an increase in demand for assessment arising from greater public awareness of autism.
As a result of this, diagnostic services are struggling to keep up with the growing demand, and are currently at risk of being swamped, the report authors warn. Indeed, NHS data shows that, in 2018, patients thought to have autism waited an average of 137 days or more following referral - against a target of 91 days - at 10 out of 25 English health trusts.
This delay in diagnosis has knock-on effects for schools, says Adele Devine, early years lead at Portesbery School in Surrey, which caters for pupils with severe learning difficulties. Early recognition, she says, is crucial to ensure that autistic children get the support they need from when they first set foot in a classroom - and that often relies on having a diagnosis in place.
Devine uses the following analogy to explain: “Imagine you enter a restaurant for the first time, you have a meal and it is awful. You might be the sort of person who complains or you might be the sort of person who says, ‘I am never going there again,’ but you are probably not the sort of person who is going to say, ‘I am never going to eat a meal again.’
“It’s that sort of extreme, that [an autistic child] can walk into a classroom and if it’s wrong, they might think, ‘I hate school - that’s it,’” she says. “So that first experience has to be right.”
Cross-sector consistency
Getting a timely diagnosis can help but that’s not all there is to it, as even when a child already has a diagnosis, evidence suggests that mainstream provision often isn’t quite hitting the mark.
In November this year, the National Autistic Society published research based on a survey of more than 4,000 parents, carers, autistic children and young people. Three-quarters of the parents said their child’s school place did not fully meet their needs and just one in four was satisfied with the special educational needs support their child was receiving. Less than half of autistic children said they were happy in school, and seven in 10 autistic children and young people said school would be better if more teachers understood autism.
Peter Gray is a policy consultant and coordinator of the SEN Policy Research Forum. He agrees that support for autistic children needs improvement - and this has to start with looking at making it more consistent across the sector.
“Not everybody is suitable for [mainstream education],” he points out. “Some young people have very big learning disabilities and very big challenges that are very difficult to meet in mainstream. But the problem is, if we are not consistent about that nationally, and some schools are less inclusive than others or less good in terms of their quality, it’s always going to mean that some children are getting displaced out of the system who probably shouldn’t be.”
This would be happening whether rates of diagnosis were on the increase or not, but the rise arguably makes it even more pressing to tackle the gaps in provision, says Gray. He believes “changes in the school environment” are necessary for teachers to better meet students’ needs. Inflexible policies and expectations are common factors hampering the successful inclusion of autistic children, he suggests.
“Expectations have become highly convergent, particularly in some secondary schools,” Gray says. “If we look at behaviour policies that are very strong in terms of ‘you do this, and this happens’, some of those schools that apply those systems make very little allowance for individual difference.
“I think that’s something to bear in mind in the way that our mainstream system is evolving and the pressures on our mainstream system in terms of accountabilities and being able to exhibit a well-behaved and well-managed school to inspectors.”
Of course, “schools need some sort of structure for how they deal with behaviour issues”, he continues, but they also need to recognise the factors that contribute to children’s behaviour and understand that it may not always be appropriate to apply behaviour structures “rigidly”.
Contributing factors
For Devine, there are other factors also contributing to poor provision: funding, recruitment and paperwork.
In April, the Department for Education announced a £280 million boost for children with SEND. The funding, it said, would be used to create new places in schools and improve existing provision to create modern, fit-for-purpose spaces suited to a wider range of needs. But this isn’t enough, says Devine.
“It’s not just a case of providing more funding,” she says. “We need more people. It’s difficult to recruit quality teaching assistants, and there seem to be fewer people applying for the roles.”
She adds that the paperwork required to refer pupils for more support has increased, which means that children at times miss out.
“If a teacher in the past wanted to refer a child to get some support - with speech therapy, for example - it used to be a shorter process, but now it’s a very lengthy form they have to fill in. Because teachers are not given that time, it’s possible some children aren’t referred when there is a need,” Devine says.
Within this context - in which schools are already struggling to provide the right level of support - it would be easy to see rising diagnosis rates as simply another stressor on an already stretched system.
However, diagnosis can be an important tool, Devine points out. After all, fewer official diagnoses wouldn’t necessarily mean fewer autistic pupils in your class; it might just mean that you don’t know who the autistic pupils are.
“It is not a negative label, but it can open the door to support,” Devine explains. “Some parents steer away from diagnosis as they worry the child will be held back. But at some point in the future they will have a teenager who may need support…a diagnosis will enable them to access this support faster.”
And, regardless of diagnosis rates, according to Gray, consistent support in mainstream education is not negotiable. If you had 100 school leaders in a room and asked them to raise their hand if they had an autistic child in their school, every one would go up, he says.
“Autism is a predictable occurrence in mainstream schools,” he stresses. “And if it’s predictable, we have got to have the capacity to meet those needs as part of what we ordinarily do.”
Claudia Civinini is a freelance journalist
This article originally appeared in the 17 December 2021 issue under the headline “Tes focus on… Autism diagnosis”
