We’re living with it – could you be too?
Rosa Silverman talks to two women behind a new documentary lifting the lid on the myths that surround the condition
With hindsight, it was always clear Georgia Harper was unlike other children. During break time at school, in her words, she “just kind of skipped around the playground on my own” and felt a “low-level sense of rejection”. But in the classroom, she was highly academic and excelled at her schoolwork. Then there were the meltdowns, which some of her peers found it funny to try to trigger.
Sam Ahern used to watch ET on loop. At home, her parents would use pictures to explain simple concepts such as getting dressed to her. At school, she was bullied.
Both are now young women – Georgia, from Corby, Northants, is 23, Sam, from London, is 21 – and both are among the estimated 700,000 people in the UK diagnosed with autism, the developmental disability that affects how people perceive the world and interact with others.
Tomorrow they will present a documentary on Channel 4 called Are You Autistic?, which challenges myths surrounding the condition and explores what life is really like for those living with it. Georgia and Sam hope it will help change perceptions of people – and especially women – with autism. Because according to the programme, many more autistic adults are going under the radar, undiagnosed and unsupported. Women are especially likely to do so, it is said, because they’re often good at masking the signs.
Last month, distinguished child psychiatrist Dr Mike Shooter controversially suggested autism today was “vastly over-diagnosed”. It was in some cases, he claimed, “a sort of middle-class parents’ way out of having to accept any of the responsibility for what their kid is like.”
The experts who appear in Are You Autistic? take the opposite view. While changes in the way autism is diagnosed mean more people are now being included in that category, it is thought that thousands may be living with the condition without realising
– a “lost generation” who have fallen through the cracks. It is, moreover, extremely hard to get a diagnosis: the National Autistic Society estimates it can take an average of two years after someone first seeks help.
Georgia and Sam are among the lucky ones, then, in the sense that they were relatively young when diagnosed, both aged around nine. Many others are believed to have been missed by the system. Jo Hoskin, a 35-year-old mother-of-three who is tested by a team of world-leading experts in the programme, suspects she might be one of them, having long struggled with social interaction.
Another, Laura James, told The Telegraph in 2015 that she’d spent her “whole life feeling different” before she was finally diagnosed with autism at the age of 45. She said: “My diagnosis was a vindication: I am not defective. I am autistic. Along with the shock came a strange sense of comfort.”
Though more research is needed on why women may frequently go undiagnosed, one theory is they “social-mask” – in essence, copy others’ behaviour – to a greater extent, due to an enhanced desire to fit in. Still, the undiagnosed are not the only ones to do this.
“At school, I had to copy absolutely everybody,” says Sam. “The body language was very hard to read and I didn’t have a clue what they were doing or understand it so I focused on the little things that non-autistic people would do. But if you social mask for the entire day, that has emotionally and physically stressful [consequences].”
Georgia says she’s been emulating the behaviour of non-autistic – or “neurotypical” – people for so long, it’s become almost second nature: “By the time you get to our age it’s not always conscious, it’s ingrained that this is how you have to act.”
For Georgia, an Oxford graduate with a master’s degree in human rights law, “this” can include planning in advance what she is going to say, for instance; or deliberately making eye contact even when it doesn’t come naturally.
When I meet her and Sam at the Channel 4 headquarters in central London, she is seven weeks into her first full-time graduate job, working in Parliament for a Labour MP. But before she was offered the post, she underwent six months of job interviews, which, with her autism, was hard.
“It’s just so difficult to focus on the question and give a good answer but also make eye contact, keep your