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what it feels like: autism diagnosis is a deep dive into acceptance and self-understanding
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kara, 39, says a later-life diagnosis of autism has given her perspective on her own authenticity, instead of trying to fit into society’s constructs of typical thinking and behaviour.
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when kara dymond comes home from work, she goes into her bedroom for at least half an hour to cuddle her cats in the dark with as little stimulation as possible. it’s a routine that has to happen to restore her energy before she can resume her evening activity.
“it’s almost like i’m reverberating all the time at this really high speed and my nervous system is just so elevated,” she says of the underlying stress on her body that accumulates during the workday. to compensate, she needs to shut down and reboot.
with her diagnosis of autism spectrum disorder (asd) and attention deficit hyperactivity disorder (adhd) in 2021, the georgetown, ont. woman has been on a path to understanding herself more fully, and her needs and actions now make a lot more sense to her. what’s even more empowering, she can embrace her uniqueness without feeling less than capable.
her brain is wired differently than neurotypical people and that isn’t a bad thing.
“before [my diagnosis] i don’t know if i consciously thought of them as shameful, but i think i did associate them with shame,” she says of her need to withdraw to her room after work or sit hugging all the coats of friends at a bachelorette party because the noise and activity felt overwhelming.
“suddenly it’s like, you know what? i am allowed to do these things and they’re necessary things for my well-being. and let’s look for other things that are necessary for my well-being. i don’t need to measure my quality of life by other people. i need to find the things that actually add to my life and add value to me as a person and nurture me.”
later diagnosis of autism is empowering and validating
kara, 39, says a later diagnosis of autism has given her perspective on her own authenticity, instead of trying to fit into society’s constructs of typical thinking and behaviour. we’re all “quirky” in our own way.
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who doesn’t want to embrace that kind of self-acceptance?
looking back, she says that so much of her childhood and young adulthood can be processed with a different lens as someone living with autism. she also keeps a running list of her own neurodivergent traits on her phone. one common characteristic of autism is challenges with socializing and picking up on sarcasm or other nuances that aren’t straightforward.
kara had difficulty making friends as a kid and didn’t agree with playground politics where girls would stop talking to a friend and exclude them unfairly. she switched schools twice but eventually resigned herself to focusing on school work and not on relationships. high school, though, offered a chance to reinvent herself and find people she could relate to from a larger social pool (some now share a later diagnosis of autism as well). she’s always loved exploring her creative talents and excelled in community theatre as a teenager, going on to study human behaviour in psychology, history and theatre at university.
“i was always really interested in humans and how humans make decisions,” she explains. “i interpret things one way, but there are other layers that maybe i’m not initially picking up on because i do take things at face value and i can be fairly gullible. now having more of an understanding of these layers of communication, which i learned through theatre, is really helpful in my own life. there have been times in my life where i’ll be really upset about something and i won’t quite know why or i won’t quite be able to pinpoint what the emotion is.”
kara’s passion for her work inspired her to write a book, the autism lens, for teachers to connect with students.
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masking autism hides the underlying stress
kara became really good at what’s known as masking to appear non-autistic, so people wouldn’t know that she is overthinking things like maintaining eye contact or what her eyebrows are doing or whether she looks sympathetic or angry. there’s the constant worry about being perceived in the way that she intends.
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there’s also the sensory component of autism that’s another complexity to solve. “you don’t even realize you’re stressed out because of the environment, which is something i learned.” at the advice of a friend, she tried noise-cancelling headphones on the subway in toronto. “my body relaxed, and i realized i don’t have to be agitated all the time when i’m traveling. i thought i was just a grumpy transit person.”
working in professional theatre in toronto in many capacities on and off-stage was a creative outlet and rewarding, but the unpredictability of finding work and getting paid was difficult for her to handle. she decided to make a career change to become an elementary school teacher. interestingly, growing up she had helped her younger brother danny, who is autistic and intellectually delayed, with his schoolwork and developed strategies to have him engage and learn.
she was drawn to pursuing a specialty in autism education, long before her eventual diagnosis. she teaches in a specialized program within the toronto catholic district school board for autistic students who are at grade level and integrated in general classroom settings, but who have social self-regulatory needs and require ongoing support. students come to her classroom one day a week for interactive learning and then attend their home school for the other days.
her passion for her work inspired her to write a book, the autism lens, for teachers to connect with students and promote inclusive classroom learning and move into the world of autism advocacy through her website.
“neurotypicals do not spend the majority of their time feeling like unusual outsiders. and if it’s helpful, i created a sample template to help your sort your own traits. begin collecting your own clues, and may it bring you peace and positive growth, as it has me,” she writes.
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she wants people to be more open to the gifts that people living with autism have and not make assumptions about their abilities.
helping kids with autism find their own voice
“i think in general we underestimate children and especially we underestimate children who have disabilities who are neurodivergent, for instance. often adults are setting goals for children or jumping in to solve problems. we make a lot of assumptions about what they need without asking them first or including their voice at the table,” she says, putting on her advocate hat. goal-setting can become more about helping kids fit in and look like everyone else, instead of helping to set goals with kids that increase their agency and their communication. these are tools that help them to actualize how they would like to develop and the goals that are important to them, she says.
autism is complicated, but listening and encouragement of people on the spectrum can go a long way to helping them feel good about their own interests and who they are.
“i also have adhd and so there’s always the stress of ‘am i going to forget to do something? am i going to going to drop the balls?’ my way of compensating most of the time has been being an a-type, very driven and putting in so much more work to cope. sometimes i still miss things or the balls still drop and so there’s this constant need to be ahead of everything. i have to do it right now because in my mind it feels like there’s only now or it’s going to be forgotten and go into the ether for all time.”
while every person living with autism is unique, she talks about the distress and burnout that many people experience. “there are times where i would be so distressed that i wouldn’t even be able to communicate. it’s just like a complete shutdown.” as a result, executive functioning worsens.
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“i’ve been juggling so many deadlines this week and again, i just feel like i’m dropping all the balls. i had my family over for my mom’s birthday, and i was making cups of coffee for everyone. i was trying to drink my own cup of coffee and i spilled it once, cleaned it up, then spilled it on my next attempt. i spilled it four or five times. so it’s like my motor skills go out the window.” she’ll also feel scatterbrained and end up finding her keys in the refrigerator or missing deadlines she’d usually have well under control.
another key benefit of her diagnosis has been talking to her students about it, following the initial apprehension about adults and their perceptions of what they associate with autism.
“i felt it was so important for my students to know that autistic people can exist fairly happily and have some measure of success at the things that they are working toward, and they have supports,” she says. “so they can understand that, yes, there are parts of this that are really hard, but there are also really beautiful possibilities and we have to be ok with advocating for needs.”
her advice for others who are seeking an assessment or who have a diagnosis of autism is encouraging.
“after the diagnosis, it’s almost like that’s the starting point in many ways and expect that it will have ups and downs. it will have lots of emotions. it’ll have sadness for your former self. it’ll have acceptance. and those are all gifts. you will get to know yourself better and be open to finding ways to get in touch with the parts of you maybe you suppressed because you were afraid people would think that you were weird.”
her journey has helped her reconnect with things that make her happiest. “when i was a child, i loved spending time in the woods. we had a cottage and i could spend all day frolicking and pretending to be a wood nymph. and i recently moved and i have the woods in my backyard.”
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world autism awareness day is april 2. to learn more about the ongoing awareness efforts, visit autism canada.
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