CLOVERDALE – Bobbi Taylor has two autistic children – but she could have gone her whole life without knowing it.
Her two oldest kids – Joe, 9, and Kristen, 7 – are on the autism spectrum, but they are high-functioning. However, the Taylors may not have learned that Joe had autism if Kristen hadn’t needed more attention for other medical conditions.
Kristen is deaf and was born with a congenital diaphragmatic hernia, which allowed four organs to migrate into her chest cavity. She was given a 50/50 chance of survival and, following a successful round of surgeries, underwent numerous doctor’s visits to deal with the subsequent challenges.
“All of a sudden, we were a revolving door of therapies for her, with feeding issues and development,” said Taylor.
While Joe was, more or less, a normal child, Kristen’s doctors noticed something was off about him. He had some quirks, including an insatiable need to find every exit when they went to a new place, and an echolalia phase in which he parroted everything people said.
“They encouraged us to potentially go through a Fraser Health Assessment Network to have him assessed for autism,” said Taylor, adding that they had Joe assessed privately and was diagnosed just before his fourth birthday.
“Going through that process, we’re going, ‘Kristen hits more of these markers than he did,’ so we put her on the wait list and waited the time out, and she got the diagnosis at three and a half."
Despite both siblings being on the high-functioning end of the autism spectrum, Joe and Kristen’s therapies vary wildly. There are a wide range of traits and treatments for autism, even for people within the same family.
“Joe can be quite independent and our focus for him growing up was to build on the social skills,” said Taylor. “Kristen had sensory issues – and getting through those sensory issues was a lot different than Joe’s issues.
Taylor said her two oldest kids react differently to certain situations, such as the family’s summer camping trips.
“Joe knew, and was able to comprehend at a younger age, ‘If I’m at the park, I stay at the park,’” she said. “Three summers ago, Kristen wandered off twice. We found her, she came back, but she has no sense of danger or boundaries.” From that point on, the Taylors put a walkie talkie on a lanyard around Kristen’s neck as a way to communicate with others in case she wandered away again.
“She now also had a currency for knowing that that behaviour caused her to have a 10-minute time out,” said Taylor. “She didn’t like that, and knowing there were consequences, this last summer, we didn’t lose Kristen.”
Taylor said she would like people to understand that the attributes of autism vary from child to child, and that you can’t tell that someone is autistic just by looking at them.
“The first thing they say is, ‘(Joe) doesn’t look like he has it,’” she said. “It is a neurological, behavioural diagnosis that that person sitting next to you could have it and you would never know.
“You’re only seeing them for this snapshot of time. Everybody just assumes that under this diagnosis that you have to be all of these things, when you don’t.”
She also wants people to recognize that being autistic doesn’t make a difference in one’s character and personality.
“As a parent, it can be very difficult to hear something’s not normal,” she said. “As we’ve gone through the journey, nobody’s normal. It’s just a diagnosis, it doesn’t change who the child is.
“We’re an interesting family, but that doesn’t stop us from being normal.”
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