Autistic women: from malaise to diagnosis

Rachel Fontaine (left) and Valérie Jessica Laporte (right) waited over 30 years to be diagnosed with autism.

Medical wandering, misdiagnosis, misunderstanding, malaise… The journey of autistic women before obtaining a diagnosis is often complex, strewn with obstacles and above all very long. Diagnosed late, two of them testify to no longer be invisible.

Valérie Jessica Laporte is autistic. Known on the web as Bleuet Atypique, she now works to raise awareness and popularize the subject of autism, particularly on TikTok where she has more than 212,000 subscribers. 

However, she was not always an expert on the subject. After a life of hiding her difference, it was only at 38 that Valérie Jessica finally received her diagnosis.  

A story that resonates with that of actress Rachel Fontaine (interpreter of Maria Lopez in Radio Enfer), who, after a long wandering, finally discovered that she had autism at the age of 40.  

“Crazy”, “silly”, “witch” 

For both women, the diagnosis, although it was could be scary at first, was a great relief. Finally, the right words were asked about their experience, their difference and their difficulties.  

“When I was younger, I saw psychologists, doctors, psychiatrists who talked about social disorder, oppositional disorder… Autism was never mentioned,” says Valérie Jessica. Upon entering CEGEP, aware of the great social difficulties she was experiencing, she decided to consult the establishment's psychologist in the hope of being helped.  

“It was very psychedelic,” she recalls. He was far from seeing a potential handicap and told me that I was probably a witch. Subsequently, convinced that something is wrong with her, Valérie Jessica does everything to hide her difficulties, going so far as to isolate herself completely to “efface” herself as much as possible.  

< p>Just like her, Rachel traces her path as a child, teenager and adult by hiding her difference. Between her acting career and that of her ex-husband, director Daniel Roby, she leads a frantic life that constantly asks her to adapt.  

All my life I thought I was silly because everything that was easy for other people was hard for me.

Rachel Fontaine

“I gave birth to my beautiful boy , Elliott, and Daniel's career boomed internationally. We moved and, when I arrived in Paris with my little baby and all these changes, my brain let go”, explains the actress. 

Psychologically exhausted, she then feels great distress and does not understand what is happening to her. “All of my senses were completely heightened, I was hearing and feeling everything in an amplified way. It was very hard, I thought I had gone crazy and I couldn't see any solution”, she recalls.  

Women and Invisible Autism 

Stories like these, psychologist, sexologist and autism specialist Isabelle Hénault have heard many. This is because misdiagnoses and late diagnoses are not uncommon in autistic women.  

“Historically, assessment forms for diagnosing autism been developed for male profiles, she reports. This has often led to misdiagnoses, such as bipolar or borderline personality disorder, or no diagnosis.” 

These forms notably failed to take into account that women generally have less difficulty socializing and tend to camouflage their autistic traits more.  

< p>Autistic women are sometimes real chameleons who adopt several roles: at work, with their children, with their friends. Except that it costs them a lot of energy and it can cause anxiety and lead to depression. They often end up having a very negative image of themselves and find it difficult to identify who they are.

Isabelle Hénault, psychologist and sexologist specializing in autism

Children, their difficulties are generally less obvious and less “disturbing” in the eyes of adults. “I spent my time reading, constantly, that was all I did. And when things were not going well, I did not express anger, but rather sadness”, testifies Valérie Jessica Laporte. 

The special interests of girls with autism are also often less atypical than those of boys. They are interested, for example, in animals, as shown by Rachel Fontaine, who remembers her obsession for horses, then for the dogs that she liked to have fun embodying. 

Autism and the Female Body 

As autism makes it difficult to manage transitional times and is often accompanied by heightened sensory sensitivity, experiences like puberty, pregnancy, motherhood and menopause are often even greater challenges for autistic women. than for others.  

A reality that Valérie Jessica – for whom menstruation is still a nightmare – would like to talk more. The arrival of her first child, after a traumatic childbirth, is accompanied by painful memories for her, when she had not yet received her diagnosis.  

To help the baby with development, intellectual stimulation, it was going extremely well, but all that was physical and emotional, I couldn't do it. When I asked for help, I quickly felt that they wanted to watch me rather than accompany me. I was very afraid that the DPJ would be sent to my house.  

Valérie Jessica Laporte

She regrets that even today, women, and especially women with autism, are taken less seriously by doctors than men. “We pass for capricious, hysterical when we express discomfort. We're going to say 'that one is a princess', when we wouldn't say that about a man.” 

In addition, women with autism are more likely to be victims of physical and sexual abuse, notes Isabelle Hénault, the intentions of others being sometimes harder for them to decipher.

Things change?  

While it was estimated a decade ago that there was approximately one autistic woman for every five autistic men, today the ratio is considered to be one to two.  

For the director general of the Quebec Federation of Autism, Lili Plourde, if women are less diagnosed, it is also because “for an adult, there is no place in the public where to have an evaluation in Quebec”. Man or woman, an adult will find it very difficult to obtain a diagnosis, unless they turn to the private sector, which is not within everyone's reach, she underlines.   

“Some people are capable of doing research, seeking a diagnosis to better understand themselves. But others, who are already experiencing great difficulties, cannot find a job or a relationship and are in pain, they cannot obtain support, ”deplores Ms. Plourde, who denounces a lack of political will. .  

Although many women are still diagnosed after the age of 30, are we still seeing progress? Is autism detected earlier in girls today? Yes, answers Isabelle Hénault.  

“We do a lot of training in schools, in CRDIs [rehabilitation centers for intellectual disabilities and pervasive developmental disorders], we train professionals in health and education to recognize female profiles.” While much remains to be done, “young girls and adolescents with autism are better and better diagnosed”, she rejoices.