Sophie's story and the importance of detecting autism in our girls at an early age | Life (2024)

This article was co-written by Adeline Lacroix, who works with Fabienne Cazalis and was diagnosed with Asperger syndrome in 2017. A second-year master’s student in psychology, she is working on a scientific literature review about the characteristics of high-functioning autistic women.

Let’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 such women are intelligent and used to compensating for communication impediments they may not be consciously aware of, they can slip through the cracks of our still-inefficient diagnostic procedures.

World Autism Awareness Day takes place every April 2, and in 2018 the focus is on the empowerment of women and girls with autism. Much work clearly remains to be done: studies indicate that one woman for every four men is diagnosed with readily identifiable “low-functioning” autism, yet only one woman for every nine men is diagnosed with “high-functioning” autism – that is, autism without intellectual disability. The gap between the two rates indicates that many autistic women are likely to remain 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.

Learning accounting by herself athome

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 her problems.

A unique way of thinking, a taste for solitude, intensepassions

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.

70% 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.

Appropriate support throughout schooling

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 an 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.

Similar test results for boys and girls

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 behaviors. 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.

Skilled in 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).

Sophie's story and the importance of detecting autism in our girls at an early age | Life (1)

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 specific questionnaire for girls

Historically, major figures in autism research believed there was significant prevalence in women. The Austrian child psychologist 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 are 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 at May 2017 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.

Sophie's story and the importance of detecting autism in our girls at an early age | Life (2)Translated from the French by Alice Heathwood for Fast for Word.

Fabienne Cazalis, Neuroscientifique, CNRS, École des hautes études en sciences sociales (EHESS).This article was originally published on The Conversation. Read the original article.

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Sophie's story and the importance of detecting autism in our girls at an early age | Life (2024)

FAQs

Why is early detection of autism important? ›

Diagnosing Autism Early in Life

Recognizing the signs early on not only provides your child with the treatment they need early in their life but helps families determine the next best steps. This helps parents better consider programs, plans, and additional changes for their child.

Why is it important for kids to know they are autistic? ›

Giving your child information on the nature of his/her differences will give them a better understanding and the motivation that is needed to drive through challenges. Discussing an autism spectrum diagnosis with your child is an important issue and one for which many parents seek advice.

How does autism present in little girls? ›

Autism in girls often presents as deficits in social skills and communication. Girls with autism may also have repetitive behaviors, but they tend to be better at boys than hiding them and fitting in with peers. Girls may be hyper-focused on a specific topic and not participate in school to their potential.

Why do you think that it is important for children with autism to receive early education services before they enter the elementary school system? ›

Whenever we think about the context for where that healthy development can best take place, the early childhood education setting is really critical. We know that kids who participate in preschool programs are more likely to continue on within the public school education system and have stronger outcomes.

Why is early detection important? ›

Early detection is essential to preventing diseases from progressing and maximizing treatment options.

Why is early detection and early intervention important for children with autism spectrum conditions? ›

The earlier the diagnosis, the sooner the child can access intervention, and the greater the opportunity for developing skills and managing sensory experiences and behaviors. While professionals can reliably diagnose autism at the age of two years old and older, they can suspect autism under the age of two.

Why is it important to Recognise autism? ›

The outcomes for individuals with autism are significantly improved when people take the time to learn more about the reality of the condition. Discrimination can occur inadvertently when there is a lack of understanding surrounding autism.

What are the benefits of getting an autism diagnosis for kids? ›

Early diagnosis is important because it means autistic children can benefit from therapies, support, and school accommodations from an early developmental stage. Autistic people may find it harder to communicate, engage in repeated behaviors, or become overwhelmed by sensory information.

Why do we need to be aware of autism? ›

Increased awareness helps people understand what autism is and how it affects individuals. This understanding fosters acceptance and inclusivity in society, reducing stigma and discrimination.

Why is it harder to detect autism in girls? ›

Females tend to mask signs of autism

Research shows that unless an autistic female has cognitive or behavioral issues, they are usually diagnosed later. Experts believe family, teachers and primary care physicians may miss the signs because autistic females tend to camouflage their symptoms (called “masking”).

What are the early signs of autism in a baby girl? ›

Early signs of autism in young children up to 36 months may include: Limited speech. Difficulties in being able to follow simple verbal instructions. Showing little interest in imaginative play, such as pretend games.

Why is autism rare in girls? ›

According to the female protective effect hypothesis, more genetic mutations are required for a girl to develop autism than for a boy. In 2012, Harvard researchers published findings suggesting that, on average, more genetic and environmental risk factors are required for girls to develop autism, compared to boys.

Why is early detection of special needs during the early childhood years crucial for student success? ›

Early intervention is especially important in minimizing potential developmental delays for the one in six children in the United States diagnosed with developmental disabilities. Early intervention can enhance the development of infants and toddlers and help individuals with disabilities reach their full potential.

Why is it important to teach children about autism? ›

I also believe it is a major concern that if children aren't taught about autism that they will take these views into their post-school life and cause a continued lack of acceptance of autistic people, which in turn will cause the continued isolation and misunderstanding of autistic people in society.

Why is it important that early childhood teachers understand early childhood development? ›

The importance of early childhood education lies in its impact on a child's emotional, cognitive, and social development. Research indicates that high-quality early childhood education from professionals such as preschool teachers can offer a range of long-term benefits, including: Improved readiness for school.

Why is early detection of developmental problems important? ›

Approximately 1 in 6 children in the US has a developmental delay, disorder, or disability (DD). Early identification of DDs can help families access services that empower children and families, and it can improve child outcomes.

Why is early screening and identification important for children with disabilities? ›

Early intervention helps children improve their abilities and learn new skills. Take these steps to help your child today: Tell your child's doctor or nurse if you notice any signs of possible developmental delay and ask for a developmental screening.

Why is early diagnosis so important? ›

Early diagnosis is also an important public health strategy because delays in identifying patients with, for example, an infectious disease, promote spread. A major reason for delayed diagnosis is the poor symptom awareness, i.e., a patient may not realize that a symptom is important and be seen clinically.

What are the benefits of autism screening? ›

Obtaining an autism diagnosis can offer several potential benefits. It provides individuals and their families with a clearer understanding of their unique strengths and challenges. With a diagnosis, individuals can access appropriate support services and interventions tailored to their specific needs.

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