“Sam’s transition to secondary school was horrific. At home we could see his mental health was deteriorating, his anxiety and stress increasing as he was heading to school. He no longer wanted to be here, let alone go to school.”
For Sarah Greaves, Sam’s mother, the priority became her son’s wellbeing, not his education. Diagnosed autistic when he was eight, after the safety of primary school, he couldn’t cope with the stress of this huge new environment.
“At secondary school he hated lunchtime – the smells, the noise, the people – it was sensory overload, and he became stressed out and anxious. He started showing physical signs of anxiety, like headaches and stomach aches. Soon he was having panic attacks. I’d wait in the car park after dropping him off at school because we’d never know if he was going to manage to get through a lesson – or go into school at all. At home he talked about harming himself, about not wanting to live anymore. We couldn’t keep putting him through it.”
Sam was eventually diagnosed with autistic burnout, and aged 11, stopped going to school.
Sam’s experience is not unusual.
When a recent survey found that one in six autistic pupils have not been to school at all since the start of this academic year, this came as no surprise to parents of autistic children. And nearly half (45 per cent) of the parents and children who responded to the UK-wide survey by Ambitious About Autism said they felt “blamed” by the government for the absences.
Yet for parents like Greaves, it’s a far more complex issue. Of the children who missed school, 62 per cent said it was due to mental health issues.
Shermeena Rabbi is a speech and language therapist who runs Unlocking Language, a clinic that provides autism assessments alongside therapy to support autistic children’s communication. Her clients have included a number of autistic children whose anxiety makes school attendance extremely difficult.
“Most of the autistic children we see, who are not attending school, are at secondary school stage. Unstructured time, like the playground at lunchtime, is very challenging for them and the demands of social communication can be intense. Autistic children can have difficulties with understanding social cues and facial expressions, and they end up feeling isolated and often get targeted by other kids, making them feel emotionally unsafe. Repeated communication breakdowns lead to heightened anxiety, and school can become intolerable.”
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Nearly one in five pupils were recorded as persistently absent according to government statistics for the academic year 2023/24. Many of these children experience emotionally based school avoidance (EBSA), which prevents them attending school for reasons connected with their neurodiversity and mental health difficulties, such as anxiety and depression. Sometimes viewed as lazy truants, or their parents too ‘soft’ to make them go to school, these children want to learn, but because their mainstream schools cannot meet their needs, they are left isolated and missing out on months, or even years, of education while their wellbeing suffers.
As the Government is due to publish long-awaited plans to reform the SEND (special educational needs and disabilities) system, this is expected to include a focus on improving mainstream schools, where more than 70 per cent of autistic pupils receive their education.
Kirsty Anna Sinclair is the mum of a 16-year-old daughter who had to be withdrawn from her mainstream school when she was 13. “At school, her anxiety was so extreme that she was self-harming. She was a tiny, silent child who would just try to disappear. She found the noise, bright lights and smell of the school so stressful that her senses were becoming dysregulated. She needed to retreat to self-regulate and school became a place where she just couldn’t be. Last year, she was finally diagnosed with autism and ADHD.”
Late diagnosis of autism among girls is not unusual. A new study has found that autistic girls are much less likely to be diagnosed than boys. By the age of 20, the study found, diagnosis rates of men and women were almost equal, challenging previous assumptions that autism is more common among males. Girls will often ‘mask’ – mimicking the behaviour of neurotypical people – or camouflage their differences, but the stress of trying to endure a seven-hour school day in a challenging environment where you don’t fit in can be overwhelming.
For 18-year-old Betsey Gorman, diagnosed autistic at 16, getting through the day at her mainstream school was always a struggle.
Betsey’s anxiety escalated in sixth form, where there was less support“I’d hold it together despite severe anxiety but would have meltdowns when I got home – I now know this was due to autistic burnout,” she says. “In school I was quiet but hyper-vigilant, constantly in fight or flight mode and trying to control my feelings of panic. I often had to leave class and miss lessons due to feeling overwhelmed, blaming my Type 1 diabetes. Once I moved to sixth form, where there was less support, my anxiety escalated, and I’d often phone my mum to come and pick me up, or have a meltdown in the morning and be unable to get myself into school.” It was soon after this move to sixth form that Betsey was diagnosed autistic.
Exclusions of autistic pupils have rocketed in the past few years, according to Ambitious About Autism research. The Department of Education figures reveal that in the 2023/2024 academic year, 16.46 per cent of autistic pupils were suspended and 0.16 per cent were permanently excluded, whereas overall 11.31 per cent of pupils were suspended and 0.13 per cent were permanently excluded.
Sinclair is a former SEND teacher who has worked both in mainstream schools and in private special schools for neurodivergent children, and formerly as a SEND consultant for Kent County Council. According to her, mainstream schools are just not set up for SEND children, and some end up getting excluded because there are safeguarding issues. “The case for an exclusion is normally where a child’s needs are not met and they become dangerous, their behaviour escalating to the point where the school can no longer contain them. When you have an autistic child having a meltdown and throwing chairs around, the safety of the teacher and other pupils must be considered. And that’s when very difficult decisions must be made.”
Rabbi recalls an autistic boy at her clinic who ended up being excluded from school due to pathological demand avoidance, where everyday demands trigger intense anxiety and a need for control. “He’d act out to avoid everyday demands and would sometimes be aggressive. He couldn’t understand complex language, so the easiest thing was to play up in class,” she says. “His deliberate defiance and aggression were how he displayed his signs of distress due to the sensory overload he experienced in school. It’s how he managed his emotions and overwhelming anxiety. And schools are, of course, not equipped to deal with it.”
Of course, not all autistic children are a danger to others, but says Sinclair, this kind of situation can have consequences. “These children are vulnerable, have no control and are continually sent into this place that is really bad for them. And so, naturally, they’re going to lash out, particularly if they lack the communication skills to express how they’re feeling.”
At present, too many mainstream schools are ill-equipped to fully cope with autistic children alongside the needs of neurotypical ones. Rabbi, whose speech therapists at her clinic visit anxious children at home, urges the government to train teachers in trauma-informed therapy. “Creating an environment of safety and trust is vital if autistic children are to be taught in mainstream schools without feeling overwhelmed with anxiety,” she says.
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There certainly needs to be a wider understanding in society of what autistic children and their parents are up against. Greaves says: “Some parents are being taken to court over their child’s absence from school – something that’s completely out of their control.”
Now Sam has an EHCP (Education Health and Care Plan) and is following an Education Other Than at School package, learning online at home. Betsey is studying psychology at university.
And there are other stories of hope.
In some cases, being unable to attend mainstream school fulltime is not the end of the world. Lucy Smith, founder of Inclusive Change, which offers coaching to organisations on how to support parents of children struggling with mental health or neurodiversity, says: “My 19-year-old autistic daughter experienced such debilitating anxiety at mainstream school that I had to withdraw her in Year 8 and home school her with the help of online classes. With both selective mutism and agoraphobia, school was just impossible for her. But she’s now got a place at university and I’m so proud of her.”
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