How a Windsor family is using TikTok to normalize autism
Giaci Miceli has had to change a lot of his routines during the COVID-19 pandemic, but one thing his family was not expecting was for him to become an online sensation.
The 24-year-old Windsor man has autism and his twin sisters Carolina and Maria, who are very involved in his life and care, started creating videos with him early this spring.
They never could have predicted that more than 8 million people would like those videos with more than 500,000 people following them, eager for more.
"It kind of [started] by accident, it was honestly just a video that I had taken because of something that I wanted to do with Giaci," said Carolina. "It just took off, and people literally were like: 'We want more content of him. Like, basically, no more of you — more of your brother.'"
The videos started out as sharing slices of Giaci's everyday life. One particularly sweet moment shows Giaci and his sister playing hide-and-seek while their mom makes dinner — as Giaci relentlessly asks for snacks.
Maria said that since the kids got their first cell phones they've been taking photos and videos of Giaci to share with family and friends.
"It wasn't anything out of the norm for him. He was used to us," she said, chuckling, but once the videos hit TikTok and Giaci's charisma gained more of a following, the sisters saw an opportunity to offer something more.
"Those videos ended up turning into educational videos where we could educate and advocate for autism awareness, which has been something that we have always done our whole lives," said Carolina. "But now we're doing it on a social media platform."
Those education videos offer tips and advice for others by sharing how the family has worked with Giaci to overcome encounters, like getting a haircut, which can be unsettling for people with sensory issues.
Maria said she finds it important to share some of Giaci's mannerisms too, to break down the stigma she says surrounds those with autism.
People with autism often self sooth, or self-stimulate, with behaviours such as rocking, pacing or hand flapping.
WATCH | Here's how the Miceli family helped Giaci become comfotable with getting his hair cut:
Another video explains Giaci's hand movements and why he does them.
"We thought that was important because ever since I was little, I remember we'd go to a grocery store or something and he would stand and people would kind of look at him funny because they don't know what it is," said Maria.
"So it's nice to be able to spread that awareness and educate people and normalize this behaviour because autism is not going away any time soon. There's no cure for autism. So people need to really educate themselves on these characteristics."
The educational videos are becoming a big hit, and Giaci's followers are asking for more.
They want to see what Giaci eats in a day or learn more about his job experience.
"Honestly, the reactions have been really, really positive, which we are so grateful for," said Carolina. "And quite a lot of people have been grateful, not only to us, but especially to Giaci for being the hardworking individual like he is and showing them that their child, if they have a toddler or a nephew, brother, sister, cousin with autism, that the sky's the limit, they can beat the stigma and still be an independent person on the spectrum."
Along with that education and awareness, the Miceli family is hoping to do more with their online fame.
The siblings — along with their parents John and Rita and older sister Lauren — are all involved in Autism Ontario's Windsor-Essex chapter.
The non-profit charitable group is unable to hold their annual Give your Heart to Autism gala due to COVID-19, so the sisters are hoping to fill the funding gap by asking for donations.
"For intensive therapies that are pretty necessary when a child is diagnosed with autism, they can cost upwards of $60,000 per year," said Maria. "So a lot of families can't afford to put their children through therapy that they need. So that's why it's so important to us to raise this money and to give back to our little chapter that has done so much for us and our family."
Livia Congi, chapter and program manager for Autism Ontario Windsor Essex said the much needed donations stay local, going directly into services like parent, sibling or caretaker support groups.
COVID-19 has not only cancelled the annual gala but has also shown there is a greater need for support, she said.
"We found during quarantine that we met several families we had no idea were out there," said Congi. "More families than normal are reaching out for support."
Last year's annual gala raised $190,000 of funding for the volunteer-run organization said Congi, adding that the group is supporting the Miceli family with their fundraiser.
"The drive and ambition for these 22-year-olds to orchestrate this is unbelievable ... we can't say enough about all they've done," she said.
The family has an ambitious goal of raising $200,000 for the organization by February 2021, but until then, they plan on sharing more about Giaci and his favourite things.
"It's important for us to normalize things about autism — like autism so different across the spectrum," said Maria.
"People believe that it's high-functioning and maybe antisocial. But that's not always the case. So for Giaci, it's completely different. It's very social."
