The month of April is dedicated to educating and raising awareness about many different conditions people may have, such as Parkinson’s Awareness Month, IBS Awareness Month, and even National Oral Health Month.
However, there is one that is not talked about enough: Autism Acceptance Month.
Autism spectrum disorder (ASD) is defined as a neurological and developmental condition that impacts someone’s brain development. This can mean experiencing difficulty in social interactions or communication problems, sensory processing, how people learn or behave, or repeating specific patterns.
Each individual with autism experiences different symptoms, or a varied combination of them, as it falls under a spectrum, which refers to the “wide variation in strengths and challenges reflected among those with the disorder.” Symptoms typically appear around two years old, making it considered a developmental disorder.
About one in 50 children and adolescents in Canada are autistic, according to the Public Health Agency of Canada, with the average diagnosis being four or five years old. There isn’t much information about the number of autistic adults in Canada due to a lack of a standardized process.
BC Autism estimates there are “about 100,000 adults in the province that may meet the criteria for autism,” while there was not much information about other provinces.
The Autism Spectrum Disorder: Highlights from the 2019 Canadian Health Survey on Children and Youth study by the Public Health Agency of Canada found males were diagnosed roughly four times more frequently than females.
This is not uncommon, as for many girls and women, it takes longer to be diagnosed as symptoms are shown differently than boys and men.
Sam Ives-Allison, a 27-year-old Ontario resident, was diagnosed when she was 20. She felt different from her peers for most of her life as she struggled with social interactions, sensory issues, and emotions.
“I didn’t understand when people were joking, I never made enough eye contact, I accidentally interrupted people because I didn’t know when it was my turn to speak, and I can talk endlessly about my interests without realizing that no one is listening,” Ives-Allison wrote in an email to The Runner.
“I got easily overwhelmed and stressed out when trying to manage relationships and emotions. I had panic attacks when I had to socialize for long periods of time. I struggled with a lot of deep [insecurities] about not being ‘normal.’ I suffered many years of bullying for being different than my peers,” she wrote.
Two years before her diagnosis, Ives-Allison read The Reason I Jump written by Naoki Higashida, a non-verbal autistic author, in Chapters and realized a lot of what he wrote resonated with her.
Ives-Allison was searching for answers about why she was seen differently from her peers, so she went to her family doctor to see if she may be on the spectrum. Ives-Allison’s doctor recommended seeing a specialist in Toronto, but it was a year and a half wait.
“That specialist had almost zero knowledge when it pertained to the differences in traits with females on the spectrum,” she wrote. “Women are so underdiagnosed due to a lack of knowledge and training with medical professionals. Girls are expected much more growing up to mask for survival [whereas] boys aren’t pressured as much to cover up their autistic traits.”
Doctors sometimes miss autism symptoms in girls or women as they might be looking for more common traits seen in boys such as repetitive behaviours or difficulty with impulse control.
When Ives-Allison was diagnosed, she had incredible support from friends and family, but it hasn’t always been easy interacting with strangers.
“I didn’t realize how often I and other people on the spectrum face ableism and a lack of empathy. It made me angry but mostly impassioned to share my experience with others and spread awareness.”
Moving forward, she hopes labels surrounding autism change from “high-functioning” and “low-functioning,” to the amount of support they need.
“Do I need a lot of assistance or minimal?” she wrote. “There is [also] a lack of programming for adults with autism. It’s like the minute you turn 18, the service dogs are taken away, the therapy isn’t covered and the social group you joined to meet other adults on the spectrum is being run by ableists.”
During Autism Acceptance Month and throughout the rest of the year, it is important to recognize society still has a lot of work to do with proper support and diagnosis. Stigmas, like people in the community can’t function properly, also need to be broken down as people with autism can achieve anything they want to in life.
“We do not need to be cured, we need to be understood,” Ives-Allison wrote. “Autism Acceptance Month means spreading love and positivity through the autism community and beyond.”