Sam Ahern and Georgia Harper are proud to be autistic. Photo / Daily Telegraph
Sam Ahern and Georgia Harper are proud to be autistic. Photo / Daily Telegraph
Rosa Silverman of the Daily Telegraph 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.
This week they will present a documentary 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 in the UK 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 9. 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 Daily 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."
Five times as many males as females are diagnosed with autism but it's increasingly believed that may be because girls are better at masking symptoms. Photo / 123rf
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 body language open and don't fidget too much," she says.
That she has managed to mask her autism in the past does not necessarily help either, she adds.
"With masking, unfortunately people think if you can do something once you can do it all the time," she explains. "[That] if you look fine you must be fine. But that comes at a huge cost."
Although her parents had to fight hard to have her diagnosed — "because a lot of people had the attitude of 'oh, but she gets good grades,' like that's the only thing that matters" — having known since primary school that she was autistic meant she was "able to know in myself that it's not a bad thing, it's a different brain wiring".
Others, however, are making it to adulthood without knowing why they feel somehow different.
"One of the most important reasons for making sure people are diagnosed is because then you can learn about yourself in that framework," says Georgia.
"You can learn what your triggers are and then work with it. When I was younger I didn't know sensory issues were a thing [for me]. Once you know what you can't cope with then you know how to either avoid it or figure out ways of coping. You might also need a diagnosis to access support services, though sadly these are often quite lacking."
The way a child interacts with others or focuses on a task can be a clue. Photo / 123rf
Sam agrees knowledge is power.
"If an undiagnosed autistic person has a huge stressful situation and starts having a meltdown and can't function for a week and they're blaming it on themselves — if they get diagnosed they then understand 'oh, this is why I'm having meltdowns, because I was late, or because that person was wearing bright yellow socks and it made my eyes go funny'."
The documentary is the first foray into television for both women, who originally met through the Ambitious About Autism charity. The programme also features the presenter Anna Richardson, whose nephew is autistic, and Professor Simon Baron-Cohen, director of the Autism Research Centre in Cambridge.
But Georgia says: "One of the target audiences for me, for this show, is undiagnosed adults".
"They've grown up at a time when autism was hardly heard of at all, live now in a time where autism is viewed negatively, and might have internalised all these horrible messages about themselves. If we can help one person get the support they need, it's worth it."
They also hope the documentary will enlighten those for whom the Rain Man stereotype prevails.
"I don't think we have many autistic female heroes," muses Sam, able to cite only Temple Grandin, a well-known American professor of animal science.
Georgia agrees. "I always feel there are two binary stereotypes: genius or completely incapable. Half of autistic people have their strengths, capabilities and personalities ignored; the other half have our difficulties ignored. Neither of those are particularly healthy. It's important to note autism isn't one thing, it isn't two things; all autistic people are different."
So while some will, like Georgia and Sam, be verbal — and in their case highly articulate — others are non-verbal. Social interaction can be problematic, to a greater or lesser degree; and restricted or repetitive patterns of behaviour can affect those with autism in myriad ways.
The lack of understanding is something both women have come up against time and again. "Both of us have had our fair share of 'oh, but you don't look autistic', and 'oh, isn't [autism] for boys?' " says Sam.
As well as tackling these common misconceptions about who autism affects and how it manifests itself, the pair are keen to highlight the positives of the condition.
"Being proud — that's a thing we don't talk about," says Sam. "We focus on the negatives and what we can't do. Georgia and I have actually stood up in front of a camera and said we're proud to be autistic."
Which is not to say they think everything's perfect, qualifies Georgia.
"It isn't, but neurotypical people, I'm sure, have difficulties and struggles too. It's part of who we are, and it's better to work with that than against it."
Autism is a lifelong developmental disability that affects one in 100 people in the UK. It affects the way a person communicates and how they experience the world around them.
Five times as many males as females are diagnosed, but it's increasingly believed that autistic women and girls may be better at masking their difficulties, leading to their autism being missed.
Online "autism tests" aren't always reliable, so it's always best to seek referral for a formal diagnosis from your GP, but people on the autistic spectrum have differences in four areas:
• Social interaction — the way an adult or child plays, interacts and develops relationships. For example, difficulty interpreting social cues. • Social imagination — this could include a person having a special interest, sticking to fixed routine, or struggling to adapt to change. • Social communication — having little or no speech or delayed language development, or understanding language very literally. • Sensory differences — this could include "under" or "over" sensitivity in any of the senses, including sight, hearing, balance. For example, sensitivity to noises or bright lights.
