Fabienne Cazalis and Adeline Lacroix report on the challenges faced by women with autism and recent efforts in France and elsewhere to improve diagnosisLet’s call her Sophie. The description we’ll give could be that of any woman who is on the autistic spectrum without knowing it. Because they’re intelligent and used to compensating for communication impediments they may not be consciously aware of, these women slip through the cracks of our still-too-inefficient diagnostic procedures.
Studies reveal one woman for every nine men is diagnosed with so-called ‘high-functioning’ autism, that is, autism without intellectual disability. If we compare this to the one woman for every four men diagnosed with the more readily identified ‘low-functioning’ autism, we can easily imagine many autistic women are left undiagnosed.
Today, Sophie, who lives in France, has a job interview. If you could see her nervously twisting her hair, you might think she’s anxious, like anyone would be in the circumstances. You would be wrong. Sophie is actually on the verge of a panic attack. At 27, she just lost her job as a salesperson due to repeated cash-register mistakes — and it’s the eighth time in the last three years. She loved maths at university and is deeply ashamed. She hopes the person hiring will not bring up the subject — she has no justification for her professional failures and knows that she is incapable of making one up.
Sophie’s wish is granted: the interviewer asks her instead about her time at university. Relieved, she happily launches into an explanation of her masters thesis on meteorological modelling, but he cuts her off abruptly, clearly irritated. He wants to know why she is applying for a temporary job as an accounting assistant when she has no experience or training. Although her heart is racing wildly, Sophie manages to keep her composure, explaining that she taught herself accounting at home in the evenings. She describes the excellent MOOC (online course) she found on the website of the French Conservatoire National des Arts et Métiers, and tells him how one of the questions she asked the teacher on the forum led to a fascinating debate on the concept of depreciation expenses.
Sophie is not good at guessing what people are thinking, but she understands from the way the man is staring at her that he believes she is lying. Overwhelmed, she feels weaker by the minute. She watches his lips move but does not understand what he’s saying. Ten minutes later she’s in the street, with no memory of how the interview ended. She is shaking and holding back tears. She curses herself, wondering how anyone could be so stupid and pathetic.
She climbs into a crowded bus, swaying under the heavy odours of perfumes worn by those pressed up around her. When the bus brakes suddenly, she loses her balance and bumps into a fellow passenger. She apologises profusely and hurriedly gets off. In her rush, she trips again and falls to the pavement. ‘I must get up, everyone is looking,’ she thinks, but her body refuses to obey. She can no longer see properly and doesn’t even realise her own tears are blinding her. Someone calls an ambulance. Sophie wakes up in a psychiatric facility. She will be misdiagnosed with a psychological disorder and given medication that will solve none of her problems.
Sophie’s story is typical of the chaotic lives led by women whose autism remains undiagnosed because they are on that part of the spectrum where the signs are less obvious. In spite of her impressive cognitive capacities — like the ability to teach herself a totally new field of knowledge — Sophie has no idea of her own talents, and neither do those around her, or only rarely. Trapped in a social environment highly critical of what makes her unique, such as her unusual way of thinking, taste for solitude, and the intensity of her passions, Sophie is acutely aware that these are seen as shortcomings.
If Sophie could be given the correct diagnosis of high-functioning autism, she would at last understand the way her mind works. She could meet other autistic adults and learn from their experience to help her overcome her own difficulties.
Autism is characterised by social and communicative difficulties, specific interests that people with autism are capable of speaking about for hours (like meteorological modelling, in Sophie’s case), and stereotyped behaviours. There are also differences in perception, such as hypersensitivity to smells or sounds, or, conversely, reduced sensitivity to pain. Autism is thought to affect around one in one hundred people.
Seventy per cent of people with autism have either normal or superior intelligence. This form of autism is generally referred to as high-functioning autism, as per the latest version of the ‘bible’ of psychiatric disorders, the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders). In this version, all reference to older categories has been removed, including Asperger syndrome. The term Asperger’s is still used today in some countries, however, even though all types of autism are now grouped under a single spectrum and classified according to the severity of symptoms.
Ideally, Sophie would have been diagnosed as a child. She could have benefited from specialised support throughout her schooling, as is legally required in France and other countries. This support would have made her less vulnerable, giving her the tools to defend herself from bullying in the schoolyard and helping her learn with teaching methods adapted to her way of thinking. Upon leaving school, her diagnosis would have opened up access to labour rights, such as disabled worker status, which would have helped her find adapted employment. Sophie’s life would have been simpler and she would be more at peace with herself.
But Sophie’s problems are twofold. Not only is she autistic, but she’s also a woman. If getting a diagnosis is already tricky for men, it’s even more difficult for women. Originally, autism was thought to only rarely affect women. This erroneous idea, which emerged from a 1943 study conducted by Léo Kanner (the first psychiatrist to describe the syndrome), has been reinforced by the long-dominant psychoanalytical approach. The criteria defining autistic symptoms were based on observations in boys.
Later, when science replaced psychoanalysis as the dominant model, studies were largely conducted on male children, thus reducing the chances of recognising autism as it’s manifested in females. This phenomenon, also present in other areas of science and medicine, has far-reaching implications today.
To diagnose autism spectrum disorder (ASD), doctors and psychologists evaluate quantitative criteria using tests and questionnaires, but also qualitative criteria, like interests, stereotyped movements, difficulties with eye contact and language and isolation. But while autistic girls show similar test results to autistic boys, the clinical manifestation of their condition differs, at least in cases where language has been acquired.
With social-imitation strategies, for example, autistic girls have fewer troubles making friends than autistic boys; they have seemingly more ordinary interests than boys (for example horses, rather than maps of the subway); while less restless than boys, they are more vulnerable to less-visible anxiety disorders, and more adept at camouflaging their stereotyped and soothing ritual behaviours. In other words, their autism is less obtrusive, which means their symptoms are less obvious to their families, teachers and doctors.
Biology and environment explain these differences, and in this case it’s impossible to separate nature from nurture. On the nature side of the argument, some hypothesise that girls are better equipped for social cognition and more apt at caring roles. This would explain why they appear to be more interested in the animate (cats, celebrities, flowers) than the inanimate (cars, robots, rail networks).
When it comes to nurture, girls and boys are not brought up in the same way. Socially acceptable behaviours differ according to sex. Although autistic children are more resistant to this phenomenon, the pressure to conform is so strong it still ends up influencing their behaviour, as illustrated by the case of Gunilla Gerland. As a girl, this Swedish woman didn’t want to wear rings or bracelets because she hated the way metal felt on her skin. Observing that adults could not fathom that a little girl might not like these things, she resigned herself to getting gifts of jewellery, and even learned to thank the giver, before stashing the object away in a box at the earliest opportunity.
The art of camouflage
As autistic girls grow up, the gap between how their condition and that of boys manifests widens. As adults, some autistic women can become highly skilled in the art of camouflage, which explains the use of the term ‘invisible disability’ to describe certain types of high-functioning autism. Incidentally, this is the meaning of the title of Julie Dachez’s 2016 graphic novel, The Invisible Difference (Delcourt).
More and more women are discovering their condition later in life and sharing their experience. Since September 2016, the Francophone Association of Autistic Women (Association francophone des femmes autistes, or AFFA) has been fighting for recognition of the specific ways autism manifests in women. A learned society on autism in women is also being created in France, bringing together the general and scientific communities, with the goal of promoting dialogue between researchers and autistic women.
A questionnaire for girls
Historically, major figures in autism research believed there was significant prevalence in women. The Austrian Hans Asperger (for whom the syndrome is named) put forward the idea as early as 1944, as did British psychiatrist Lorna Wing, as early as 1981. But it’s only in recent years the scientific community has really started examining the evidence.
Some researchers aim to better understand the specific characteristics of autism in women. Since the beginning of this year, volunteers have been invited to participate in a study on ‘autism in women’ conducted by Laurent Mottron, a professor in the department of psychiatry at the University of Montreal (Canada), and Pauline Duret, a doctoral student in neuroscience, in collaboration with myself and Adeline Lacroix, working at the École des Hautes Études en Sciences Sociales (EHESS) in Paris (France). Adeline Lacroix is a master’s student in psychology and has herself been diagnosed with autism.
Other studies are attempting to adapt diagnostic tools for use with female subjects. A team made up of Australian scientists Sarah Ormond, Charlotte Brownlow, Michelle Garnett, and Tony Attwood, and Polish scientist Agnieszka Rynkiewicz, is currently perfecting a specific questionnaire for young girls, the Q-ASC (Questionnaire for autism spectrum conditions). They presented their work in May 2017 at a conference in San Francisco.
While there has been an initial trove of interesting results, current research into the specific characteristics of autism in women is raising more questions than it answers. However, the confusion could be considered a necessary step toward the acquisition of knowledge, provided the women affected can contribute to the research and share their point of view on the direction the work should take.
Ordinary citizens can also work towards ensuring autistic girls have the same rights as their male counterparts. By gaining a better understanding of the different forms of autism, everyone can contribute to a world in which children and adults with autism can find their place, and help fight exclusion by creating an inclusive society.
This article was originally published in French and translated into English by Alice Heathwood for Fast for Word. Some links are to French language publications.