For Kamryn Aune, a high school student with autism, one of the marks of her experience is feeling different, but an equal part of the experience is feeling surprised when others don’t exactly notice.
“Sometimes, I'll just zone out in the middle of class. I'll be like, ‘Oh, yeah, I have autism. Do people notice my symptoms? Do people notice this about me?'” she says.
For Kamryn, when people do find out that she has autism, they’re surprised, which once surprised her, too.
“I thought it was pretty obvious,” she says.
These days, the cycle is less of a shock to Kamryn. Through the years, she has gained some knowledge and understanding about what autism can look like and how people respond to it.
It’s something that everyone can benefit from learning, and April is the perfect time to do so for Autism Awareness Month.
Adding acceptance to awareness
Rather than considering autism diagnosis a limitation — as challenging as it can sometimes be — there’s an increasing sentiment during Autism Awareness Month that it’s simply one way of existing among many, hurdles and all.
One example of this shift in Canada is the trend that stresses adding autism acceptance to awareness.
According to autismcanada.ca, there is special value in it. The organization says the word “represents a shift in perspective from focusing on ‘awareness’ to embracing and understanding the diversity of individuals on the autism spectrum.”
“I think sometimes we just have to remember that just because disabilities are not physical or we can't see them, doesn't mean that people don't have them.”
-Mel Aune, whose daughter Kamryn has autism.
Acceptance “challenges stereotypes, reduces stigma, and empowers individuals to express themselves confidently,” says the organization.
But where does autism acceptance come from? The first way is perhaps the simplest — consider talking to someone who lives with it and hear their experience, which is different for everyone.
In Canada, according to autismcanada.ca, approximately 1 in 50 people are on the autism spectrum, so chances are, there are friends, neighbours, or coworkers nearby who fit the bill.
A mother’s perspective
For Kamryn, the signs appeared when she was still a baby.
Her mother, Mel, says that at first, Kamryn hit all her milestones as they came along — she sat and crawled, around 9-10 months of age, she started speaking (including using the dog’s name), and then it stopped.
“I wasn't sure why,” she says.
“Then we started to notice a little bit of some mannerisms that Kamryn had. She would start walking on her tippy toes. She [covered] her ears quite a bit, she went from saying those few words to silent, and then from silent, came back to almost ... just making sounds.”
Mel says that at this point, she “did the one thing you’re not supposed to do.”
“[I went] to Google, and [as soon as] I put in some of those symptoms, autism came up,” she says.
“From there, I realized that there might have been something that is a little bit different with Kamryn.”
The worries of a parent
For a parent, a diagnosis of autism, while providing some framework for understanding, is not without its concerns.
“[One of the biggest] worries I have is what life has for her. You want them to fit in, you want them to have friends, you want them to play sports, you want them to be on a team,” says Mel.
“Fitting in is hard for any child, let alone a child with a disability. And with her right now, you may not see the disability, so sometimes making friends is even harder because they don't know why she's a little bit different in the way she's communicating or talking with friends.”
An ‘invisible’ diagnosis
Because Kamryn's outward signs of autism are less noticeable, the result is that people sometimes assume it isn’t there.
“It's almost like an invisible disability with Kamryn. A lot of people that she has told she has autism question it,” says Mel.
“I think sometimes we just have to remember that just because disabilities are not physical or we can't see them, doesn't mean that people don't have them.”
'I really want to scream’
Although the behaviours associated with autism are not always immediately noticeable, they can nonetheless cause discomfort for the people experiencing them.
Kamryn says that one challenge she faces is doing things at the last minute. For her, it’s better to have plenty of notice before she does any activity. Her mother says that another barrier is social interaction.
What Kamryn labels as her “episodes” also pose a challenge.
“They used to be worse when I was little, but I guess the episodes now are me getting very stressed. I really want to scream. I don't scream in the moment, but I really want to,” she says, adding that she also wrings her hands a lot when she's overwhelmed.
“[It] helps me a lot [that] my dad introduced me to expressions because then I've actually learned to be sarcastic with others and make jokes.”
-Kamryn Aune on her father helping her navigate the social world as a child with autism.
Another angle to this uncomfortable state for Kamryn is the desire to be solitary.
“When I get super stressed about something, I just want to be alone,” she says. “I don't want anyone near me unless it's someone that I actually trust or someone I know will actually comfort me.”
Kamryn says that when she feels this way, she doesn’t prefer to be asked how she’s doing. It makes it worse for her. Because of this, it’s difficult for her to be overwhelmed in the presence of other people due to the things they say.
A further challenge for Kamryn is external. How people react to or comment on neurodivergence or disability is not always easy to hear.
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She isn’t a fan of the joking, especially.
“I really hate the jokes that people make about not just autism, but disabilities .... You're going to look back to that and you're going to say, ‘Why did I make a joke about that?’” she says. “Especially when people with disabilities have episodes, how people view it as a joke, too. It’s absolutely disrespectful.”
When it comes to calming down from any of the factors that cause discomfort, Kamryn's trick is to take deep breaths, think positively, and be mindful "about the good things that have happened.”
Superpowers and supports
While living with autism has its hurdles (both in experience and how the world responds to it), it’s certainly not without its perks and beauty.
Kamryn's sense of smell and taste stand out, which she labels as “super good.”
“My parents would be cooking French toast, and then they would eat, and then I would wake up way later, and then I would have something else later, and I'd be like, ‘Is there cinnamon? Where is the cinnamon at?’ and my dad starts laughing. [He says,] ‘How do you smell that? We had that like two hours ago.'”
As for support in life, Kamryn has a family behind her that offers her all she needs, especially her brother.
“Her brother is absolutely amazing,” says Mel. “He has taught her so much. He’s the one that has really looked after her from a young age. He kind of took her under his wing and even now, they truly do get along.”
Kamryn’s mother says the parental approach that she and her husband Sean took was to treat her “no differently” from her brother.
“When we went for the referral, [I wasn’t looking to] label my child, but just to know what I was looking at and dealing with so that we were able to navigate it.”
-Mel Aune on her daughter’s autism diagnosis.
“She got carted around to the rink as a rink rat and off to baseball games, shopping malls, trips. We just kind of tried to socialize her and not treat her any differently, and I think that made a big difference,” she says.
Mel says that for parents of children with autism, “early intervention is key.”
“There are so many things that they can learn and be taught, and that's the thing with autism. They have to be taught a lot of those things .... The awareness remains huge because we don't see this as a disability. This is Kamryn’s ability,” she says.
With files from Robyn Wiebe