It was the final day of our holiday – we were sitting in a Suffolk beer garden celebrating another lovely family trip.
There had been a few meltdowns and arguments from my eldest son, Harry, who is autistic, but the freedom of some time off school had seen a huge improvement in his behaviour since the final weeks of term.
He and his younger brother were playing together when a group of teenage girls began jumping on a nearby trampoline – as the boys watched in awe, they eagerly asked to have a turn.
The youngsters kindly encouraged them to join but, as time went on, they became visibly bored and decided to head back inside. As they left, I was shocked to hear one of the girls turn to her friend and say: “That boy was a gobby little shit.”
I instantly knew she was referring to Harry, who is seven, because he’d labelled the trampoline as ‘his’, insisted on being allowed onto it and had bossed the girls around.
While I wouldn’t expect a teenage girl to automatically understand the complexities of a neurodiverse character, I do generally find that young people are more tolerant of his attitude.
So I was taken aback by her comment – so much so, my immediate response was to laugh at its absurdity. But as I later reflected on what had happened, I became concerned about how Harry might have been affected had he heard what she said.
With an estimated 700,000 autistic adults and children in the UK – approximately 1% of the population – most people probably know someone who is autistic. Yet as the mother of an autistic child, my experience is that tolerance of autistic people is low.
I’ve overheard conversations in the past, where other children have told him off, or where his classmates have not allowed him to do something, and I’ve seen him become distressed as a result.
Speaking to parents of autistic children, it’s clear incidents like this are, sadly, commonplace. Sarah Hurley, who is 51 and from the West Midlands, had an awful experience when her 10-year-old autistic son accidentally opened their car door onto a vehicle parked next to them.
“I apologised and explained about his autism and that I had told him to wait in the car,” says Hurley.
“The lady started screaming at my son for being a ‘naughty little shit’, saying autism was an excuse for misbehaved children and the parents’ inability to take responsibility for their children’s actions.”
Kerry Armstrong’s son was also criticised by a stranger when he was just nine years old.
“When we went shopping, he always got a bar of his favourite chocolate and it was always [displayed] in the same place,” says Armstrong, who is 45 and from Newcastle.
“On this day it had been moved and, as you can imagine, this caused a massive meltdown where he threw himself on the floor.
“An elderly man in front of us told the lady behind the counter that children like my son shouldn’t be allowed out. The lady challenged him, but he replied, ‘In my day they’d have been locked up at birth’.”
It’s clear there’s a widespread lack of empathy when it comes to neurodiverse children – and adults, too. Studies have found that attitudes towards them from neurotypical people are generally negative.
In later life, this can impact autistic adults greatly – it can lead to social exclusion, humiliation and neglect, which could in turn contribute to high rates of depression and anxiety.
What’s being done to increase understanding of autistic people?
In 2021, the government shared a strategy to improve the lives of autistic people and their families, and, for the first time, this included guidance on helping children and young people.
The report showed that while most of the public has heard of autism, not many people understand it and their goal was to change this so autistic people would be treated better in their community.
The six areas the strategy covers include providing better support in schools by improving the Special Education Needs and Disabilities (SEND) system and showing teachers and support staff how to better understand their needs.
But the feedback I’ve had from fellow families who are living with autism shows that in many areas, this isn’t happening.
According to SEND Reform England, a group set up by 10 mums of children with special educational needs, awareness of neurodivergent conditions has led to an increase in diagnoses, yet the specialist support required for these children to thrive in school has not met growing demand.
SEND places are limited, meaning children are being forced into educational settings that don’t meet their needs – this can impact a child’s mental health and can result in school avoidance.
The action group also suggests mainstream teachers and teaching assistants are “ill-equipped” to accommodate children with complex learning disabilities and difficulties – and is calling for reform.
Shelley Farnham set up her own business to support autistic children after noticing professionals looking after her autistic son were not getting to the bottom of his problems at school.
She took matters into her own hands and set out to learn as much as possible about the condition. When she saw how it transformed her family’s life, she was determined to help others.
Shelley became an Autism and ADHD Family Mentor and set up Complex Connexions to enable other parents to better understand their children.
“I think society generally believes children can ‘do better’ if they are punished enough or made to feel bad enough for not getting things ‘right’,” she says.
“Because of these outdated views, parents can be afraid to ‘label’ their child as having autism or ADHD, but a child that doesn’t properly understand themselves will label themselves much more harshly, as ‘lazy, stupid, different, incapable’.”
From improvements to SEND education to simply being more tolerant of the children around us in day-to-day life, it’s clear there’s so much more that can be done to help future generations thrive.
Farnham’s message to others is: “Please take time to learn more and understand more about different brains and nervous systems so that you can better understand the behaviour you see.
“Autistic children are fellow human beings, who may experience and respond to the world differently to the way you do, but that doesn’t make them any less valid or deserving of the opportunity to live their lives in their way.”
With more and more young people being recognised as neurodivergent, it’s vital we improve the public understanding of autism – and while schools and the government have a level of responsibility for this, the change really needs to begin with us.