Full-time teaching is tough nowadays. Endless admin, prescriptive lesson plans and navigating the minefield of childhood friendships is painstaking. Imagine you’re a teacher who can’t look a student in the eye or hold a conversation for longer than a minute and you’re plagued by a crippling fear of loud noises.
Rachel doesn’t have to imagine. She’s a 28-year-old teacher and she lives with Asperger’s syndrome.
“Eye contact is hard,” she says. “Knowing how or when to join in with a conversation is hard – especially small talk. I have mild face blindness and difficulties when I’m with a group of people because there’s too many distracting noises”.
It’s taken Rachel until the age of 28 to finally establish her identity, following a series of both depressive and severely anxious episodes throughout her early twenties. Despite regular contact with mental health professionals, it was Google that ultimately provided her long-awaited resolution.
“I happened to meet a boy who told me he was diagnosed with autism spectrum disorder as a child,” she says. “Curious to know more, I Googled it and happened to come across articles about Asperger’s symptoms in women. It was like reading a description of me.”
20-year-old Lucy Harding was diagnosed with Asperger’s three years ago, following experimentation with self-harm scars and an admission to an anorexia inpatient unit.
“Instead of just talking about what I’m upset about,” Lucy explains, “I’ve engaged in unhelpful ways to communicate – like not eating.” Growing up, Lucy’s literal thinking patterns made regular teenage relationships traumatic. “If somebody told me that they loved me, I would never have thought twice about that being untrue,” she says. Once late adolescence hit, her social world became increasingly perplexing and with the addition of a fresh batch of hormones, she was catapulted into her “coping strategy” – anorexia nervosa. After years of intensive behavioural and cognitive therapies, an NHS psychologist finally detected Lucy’s underlying Asperger’s and treatment was altered to account for her spectrum disorder.
“The diagnosis has given me confidence in myself,” says Lucy. “I’ve had a lot of support from occupational therapists and it’s helped other people to understand me better, but more importantly it has made me accept myself.” Recognition of Lucy’s autism spectrum disorder (ASD) was the key to her getting the right support – and all it took was a hospital admission and one suicide attempt.
According to the research, four times as many boys as girls suffer from an ASD. The National Autistic Society reports that only one in five female Asperger’s sufferers receive a diagnosis by the age of 11, compared to half of boys. This gender discrepancy is largely accepted as fact – boys are more likely to be on the spectrum. Or are they? Recent revelations suggest that it’s this assumption that has failed generations of autistic women.
Autistic spectrum disorder is a lifelong developmental disability that can have a debilitating impact on the way someone relates to others as well as their experience of the outside world. According to the eminent autism researcher, Professor Simon Baron-Cohen, the definitive factor in autism is a deficit in “theory of mind” – the ability to identify emotions or mental states in others and act accordingly. In 1997, following a series of psychological empathy tests, Professor Baron-Cohen hypothesised that autism is the manifestation of the “extreme male brain”.
Fast-forward almost twenty years and the psychological school of thought has taken an unexpected U-turn. As it turns out, women with ASD may not be unusual at all, but merely hidden by their expert disguising techniques. Researchers at the Yale School of Medicine have found that girls at high risk of autism, aged 6 to 12 months, are much more capable of reacting to social cues than boys of the same age. It’s exactly this “social competency” that autism expert Dr William Mandy argues leaves thousands of autistic women undiagnosed and as a result, vulnerable to a whole host of mental health illnesses. “We kept coming across girls who we thought, no she definitely doesn’t have ASD,” he says of his experience treating children at Great Ormond Street’s specialist clinic.
“She’d keep eye contact, her gestures would be great, she’d talk well about friendships. The more carefully you dug and the more you spoke with these young women, you’d realise that what on the surface seemed to be social ability was, underneath it, real difficulties.”
It’s no secret that the diagnostic criteria for autism are awash with gender bias. Dr Mandy’s findings, based on a vast collection of interviews with ASD women, echo earlier research highlighting the vast differences in the way in which ASD manifests between girls and boys. According to Dr Mandy, the female ability to “mask” autistic traits is somewhat of a phenomenon.
“They’ve often created a filler for themselves, in order just to get by. They have been missed by certain services and just classed as ultra shy or given family therapy for their anxiety – all addressing everything but autism. There’s this idea about ‘pretending to be normal.”
The effect of “masking” or “camouflaging” can be so strong that even a specialist such as Dr Mandy is at risk of missing the signs.
“There was one girl who hadn’t been diagnosed in childhood and although despite being quite classic, I could have easily missed her. She talked about how she’d consciously learned to mask her behaviours by watching others in school, copying and even practicing in the mirror.”
Bizarrely, the masking phenomenon that Dr Mandy speaks of is almost exclusively seen in the female autism phenotype. Seemingly, autistic traits are much more noticeable in men. According to the experts, the social and emotional advantages of being a woman are in this case, somewhat of a curse.
Janet Treasure has led pioneering research into the relationship between eating disorders and ASD and argues that autistic women are undiagnosed due to their natural “copying” skills.
“Women are much more socially skilled,” she says. “Girls learn all the new strategies so they can to make it less apparent. That’s why women tend to get diagnosed when they are older and in more independent relationships.”
Dr Mandy points out the “very high standard” of social interaction involved in female peer groups. Unlike boys, young girls’ friendships tend to be formed around “shared interests” and a heightened desire to fit in, hence the increased appetite to “be normal”. As Dr Mandy puts it, “you can’t get away with just kicking a football around at break time”.
Social rehearsal was a regular part of 17-year-old Rosie’s childhood. Although diagnosed autistic at the age of nine, she felt enormous pressure to conform to the expectations of stereotypical gender roles. “Many young women are told that they have to act a certain way or like a certain thing,” she ponders. “Maybe because of these harmful ideologies, autistic women feel pressured to pretend to be someone they’re not.”
A diagnosis of autism often comes alongside very specific specialist interests – chess, mathematics and fine art are among the clichéd assumptions. What about Jane Austen novels, or a fascination with the scientific intricacies of human behaviour? For women, such intense interests can also signal an autistic spectrum disorder.
Another common preoccupation for female ASD sufferers is food. Louise Karlsson, a PhD student and clinical psychologist from the Gillberg Neuropsychiatry Centre specialises in the ASD cohort who are also diagnosed with an eating disorder. Karlsson’s patients often respond poorly to recommended treatment for anorexia and “when the treatment doesn’t work as usual, you have to start investigating and think, maybe there’s something else,” she says.
The parallels between the two disorders are considerable and the difficulty lies in deciphering where one stops and the other begins. “There’s a lot of restricted eating in autism. It could be a colour, quantity of food and even perception, [autistic people] can be sensitive to touch, smells or texture.
“The anorexia may not be weight driven but it could still be a special interest”, she explains. “One patient found a particular seed, for example, and was convinced it had everything she needed to survive. That was the only thing she’d eat.
“Who should treat them? When it comes to gaining weight – you send them to eating disorders clinic.” Karlsson highlights the importance of an extensive developmental history in order to separate the two, especially as, “it’s more and more clear that conditions are overlapping”.
Last month’s survey, conducted by the National Centre of Social Research, found 31 per cent of women in the UK are suffering from mental health problems – how many of these women are victims of a missed diagnosis of ASD?
Up until her diagnosis in January 2016, 32-year-old Jill McKenzie was one such victim. Since seeking help from NHS mental health services in July 2013 (although first seen by mental health professionals at 19), Jill was received a plethora of diagnoses before a re-referral to yet another psychiatrist who finally identified her ASD.
“I had been under my local NHS community mental health team since July 2013,” Jill says, “with various diagnoses – bipolar, Borderline Personality Disorder (BPD), depression and anxiety”. Jill was offered a support group for BPD sufferers and attended for a year, desperate to find solace in the similarities with others. The treatment had the opposite effect. “I began to question my diagnosis, I couldn’t identify with what the other women in the group were saying,” she says. Confused and exasperated, Jill turned to her family and it was only then that she became aware of a family history of autism.
“I discovered that my half-brother and his son both had ASD,” she says. After relaying this to her community mental health team, Jill’s previous diagnoses were scrapped and ASD is now her sole diagnosis.
How can we uncover these hidden women and protect them from the revolving door of mental health services? According to Louise Karlsson, the secrets are buried deep within childhood and it’s the duty of professionals to unearth the history – no matter how silent it seems.
“We have to be able to give each individual adaptive treatment, no matter how many disorders they have. That’s just human rights, isn’t it?” For most, the right diagnosis provides a key component of happiness – unconditional self-acceptance.
“It [my diagnosis] has made me accept myself as a person,” Lucy says. “I’m not weird and there is nothing wrong with me. I’m different, and there is nothing wrong with being different.”
With thanks to the National Autistic Society
Content from our partners
Related
