At the age of forty-eight, Serenity Kiser was diagnosed with autism. This diagnosis was both a surprise and an answer to the questions she had always asked herself. As a child, she constantly heard that she was “too much” this or that: that she laughed too loudly, that her actions were inappropriate or that she said the wrong things at the wrong time. At eleven years old, she was interned twice, for reasons she didn’t fully understand.
After being diagnosed as autistic, Serenity Kiser looked back in time and consulted the administrative documents relating to her internment. She then realized that the traits that had caused her to be institutionalized were “almost typical autism,” she reports. Doctors documented that she refused eye contact, spoke in a monotone voice, and questioned their authority.
Experts attribute this dramatic increase in part to increased awareness of autism, as well as a broadening of the clinical definition to include forms such as Asperger’s syndrome.
In addition, compared to the conception that we once had of autism, we now understand better and better the different forms that it can take.
“The stereotype that persists is that autism is a childhood disability that locks people into their own world, that they are disconnected from society and community, that they are sad and suffer “, says Monique Botha, psychologist specializing in autism and researcher at the University of Durham, whose work focuses on bias present in research in this area. “ [C’est très loin] of what the reality of autism is. »
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by differences in communication, learning and behavior.
People with ASD often exhibit restricted interests and repetitive behaviors, such as an obsession with trains, memorizing sports statistics, or a very predictable daily routine. They often also have communication difficulties, such as echolalia, the repetition of words or phrases spoken by someone else, or selective mutism, the inability to speak in specific situations.
Although researchers and doctors are getting better and better at recognizing the many forms that autism can take, many of them still remain neglected.
“We find that girls and women, on average, take longer to be diagnosed,” says Laura Hull, a researcher at the University of Bristol, whose work focuses on adolescent mental health and wellbeing. and autistic adults. “They tend to be diagnosed when they are older and go through a greater number of rounds of evaluation. »
As Laura Hull points out, girls and women may be overlooked for one of the following reasons: they may demonstrate better basic social skills, such as holding brief conversations or maintaining limited eye contact, only encountering difficulties in more complex social situations, such as establishing and maintaining friendships. They may also develop specific interests that are not stereotypically associated with autism, such as being obsessed with ponies or fashion rather than trains and computers.
When Serenity Kiser was a child, she found herself gravitating toward the autistic boy in her class, whose gestures, such as flapping his hands or jumping up and down, were very similar to her own. However, she was told by the teaching staff that she was not allowed to act in this way because he was autistic and she was not.
“During my entire childhood, only boys were diagnosed,” says Serenity Kiser. “I was moving around a lot, jumping and kicking [mains et des bras] constantly. I was very quickly [corrigée]. »
Although autism is classified as a social communication disorder, research is beginning to go further and show that these difficulties are more related to differences in the way we communicate than to a disability.
“The stereotype is that autistic people lack empathy and theory of mind”, that is to say that they do not have the ability to understand what others may think, explains Joel Schwartz, psychologist at Total Spectrum Counseling, a structure which offers advice and psychological support to everyone and especially to neurodivergent people, whose specialty consists of working with this type of profile.
In 2012, however, British sociologist Damian Milton proposed the “dual empathy problem,” according to which communication difficulties result from different experiential experiences. People who experience the world around them in the same way would be more likely to interact successfully.
Indeed, “if we bring together autistic people and make them work on something […]it turns out that they actually collaborate and understand each other very well, and they show a lot of empathy towards each other,” says Joel Schwartz.
This new understanding has broadened our notion, at the time of diagnosis, of what autism may look like, while providing better insight into the types of support that can be provided.
This difference in the way we communicate is thought to come from sensory differences, a key aspect of autism. How we experience the world depends on how the brain processes and interprets stimuli such as noise or pain. In autistic people, this may result in an extraordinarily high pain tolerance or unusual sensitivity to sound or light.
Autistic people can quickly become overwhelmed by too many stimuli, which causes them to withdraw or have difficulty regulating their emotions. This can lead to autistic and stereotypical behaviors, such as rocking, spinning, head banging, or hand flapping. However, rather than distracting autistic people from these repetitive behaviors, referred to as self-stimulation, research shows that they help with emotional regulation.
“There are so many[informations] that arrive and that need to be treated,” explains Karissa Burnett, psychologist specializing in autism and founder of Divergent Pathways, a structure specializing in neurodiversity, which itself works with neurodivergent patients. “It takes a little longer and can overwhelm us, especially if we haven’t been taught to regulate our emotions. »
If we take another perspective, these sensory differences offer autistic people a different point of view on the world. Being able to process only a limited amount of sensory information at a time, autistic people often process sensory information from the world around them in smaller chunks but in a much more intense manner.
“This depth of experience is what can also give them the ability to connect with intensity to what is around them, to experience extreme joy, to see things with great clarity,” explains Joel Schwartz.
The latter, whose wife is autistic, says: “By learning to see the world through her eyes, even if only a little, I have deepened my experience. I’ve found more joy in things that I otherwise wouldn’t have dwelled on, just by being able to experience it through her, to perceive things in her way, and it’s really awesome. »
