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what it feels like: learning how to be yourself with autism
6 minute read
now in grade 11, nico boffa is learning about photography and filmmaking, has joined school clubs, loves science and physics, and excels at track and field, especially running.
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nico boffa has perfect pitch. the 16-year-old vancouver teen can tell you the notes of everyday sounds like a clanging pot, a door shutting and even the sound of his footsteps while walking in the forest.
“it was a b,” he recalls of the musical note he identified on the trail walk when he was about 10. he also plays the piano by ear and has had lessons to perfect his gift for music. “i actually do not read sheet music that often. i like to learn songs by ear. and i like to play a lot of ’70s and ’80s songs, like rebel yell by billy idol and depeche mode’s just can’t get enough.”
boffa is a “joy,” according to his mom, mary, but there have been a lot of challenges along the way. he was diagnosed with autism at age three when the family was living in lugano, switzerland, but mary, a single mom and dental hygienist, decided to return to canada because the programs and resources in lugano for people on the autism spectrum were “archaic and out of date at the time,” she says. however, as many parents agree, it’s a challenge in canada to get an official diagnosis and access services.
“it was a year-and-a half struggle before i could get an official diagnosis,” she notes. as well, without any referrals, she had to personally research and find a practitioner who was qualified to make an autism diagnosis.
families in b.c. have to wait over a year for a public autism assessment, according to autismbc. the autism spectrum disorder (asd) diagnosis is the first step to eligibility for autism funding for therapy and interventions. ontario is seeing families leave the province because of long wait lists for autism services, reports the canadian press. it’s a growing issue as the number of children diagnosed with asd in canada is estimated at one in 50, or two per cent, of those aged one to 17, the most recent data from the 2019 canadian health survey on children and youth reveals.
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when you factor in adults being newly diagnosed, autism canada says the prevalence of autism in the population is about one in 44 individuals.
what does it mean for people? asd is a neurodevelopmental disorder that impacts brain development, resulting in communication problems, difficulty with social interactions and a tendency to repeat patterns of behaviour. the term “spectrum” refers to a range of severity and symptoms, and there is no standard “type” of person on the spectrum.
so, if you meet one autistic person, you’ve met one autistic person. it’s a lifelong condition. people with autism often need support for living, education and employment throughout their lives, depending on their individual needs.
for boffa, it’s a journey to understand how he can be himself and not worry about “conforming” to be more like his neurotypical peers. his behaviour and emotions can be different, but that’s okay when you have supportive friends and family.
what does autism feel like?
“i can definitely tell you that it feels a lot different. i’m definitely a lot deeper and i see patterns in nature, and i see physics and math and music all around me,” he explains. “i was an early reader, but a late speaker. i learned how to read before i could talk.”
his communication and speech were extremely delayed, but amazingly at age four, he was reading and writing before he was able to form a full sentence. by kindergarten, the teacher would have him sit in her seat at story time and read books to his classmates. his mom says this was also a strategy to keep him engaged and sitting still. otherwise, he would have his back turned to the group or would get up and walk around.
“there were also many issues with self-regulation and sensory issues, and meltdowns were common,” mary adds. he wasn’t at all interested in making friends and was more than content to do things on his own.
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“i remember sitting in my car once, watching him during recess, and crying because he seemed to be the only child that was wandering the school yard alone,” she says. “fortunately, his grade 1 support worker knocked some sense into me and pointed out that spending time in nature was enhancing his imagination and creativity. and he was happy.”
he had speech therapy from a young age and continues to have weekly sessions with a behaviour interventionist under the supervision of a therapist whom he’s worked with since he was five years old. the therapy helps with socializing and understanding people’s emotions and hidden meanings or inferences. (this luckily is covered by the autism funding unit in b.c., mary says.) when things are straightforward, life is a little easier.
the transition to high school and being yourself with autism
now nico is learning about photography and filmmaking, has joined school clubs in his current grade 11, loves science and physics, and excels at track and field, especially running. “i’m currently training for the 400 metre, because i feel like that’s what i’m going to be best at.” he made it to the provincials last year and placed 14 overall in the 100-metre dash.
“when i was a little kid, my mom put me in a lot of sports camps, like soccer, and i didn’t really want to play soccer when i was younger. i would just chase butterflies while all the other kids would be playing soccer,” nico says, laughing.
“so even to this day, i still have trouble hanging out with my friends if we’re in a large group, because it’s hard for me to follow when everybody is talking and sort of just throwing words in there. because i have a tendency to focus on everything, so it’s quite overstimulating. i find it much easier to have a one-on-one conversation.”
one of his closest friends he’s had since kindergarten. although his buddy is in a different school now, they still hang out together a lot, “to watch movies, play video games, go for walks,” he says. “i’d rather be around my friends, even if they’re in a group, than alone. i’m an extrovert.”
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starting high school though was difficult and scary – like it is for anybody – and nico says he would often mask his autism. “i really did not want people i’ve just met to know that i was autistic unless i really trusted them. i was afraid of being judged for it or looked down upon.”
the grade 9 transition year was a turning point in many ways. now he’s passionate about standing up and creating awareness about autism. he’s an ambassador for the national non-profit autism canada where he contributes videos of his piano playing for newsletters and events. he also he wears his autism canada “be kind” pink t-shirt at least once a week to school.
“i like to bring awareness about people on the spectrum and show people that it’s more than just a disability, but rather a different ability,” he says. neurodiversity means that some people on the autism spectrum have incredible talents that deserve to be nurtured and everyone should be accepted for who they are.
“i know that some autistic people really like math and they have a great memory for numbers,” he says, offering examples. he has an affinity for science and physics and is planning to study engineering after high school.
“my dream job would be to be an aerospace engineer.”
growing together with autism and ‘italian mom moments’
for now, though, his mom says he’s enjoying school, his friends and life at home. the two go running together and have done a few races. they have those “italian mom moments” at times as well, mary admits.
“there are moments when i’m being overly protective and a helicopter mom and he thinks, rightfully so, that he should have much more autonomy at his age. he went camping in september with his scouts group and i couldn’t stop worrying about him all weekend as he had to navigate his way – two buses and a ferry – with his friends to the campsite. at some point, one of his friends noticed that he was wearing an apple air tag watch and asked him why he was wearing it, and he said, ‘what can i do, my mom is italian?’”
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she is clearly proud of his accomplishments and the young man he’s become.
“he also refers to me as a strict mother since i’m a bit old-school about teenagers doing their fair share of chores and having good manners,” mary says. “still, i consider myself so blessed to have this guy who is sweet, compassionate and loving, and who sparks so much joy.”
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