Tanner Bohay is, in many ways, a typical nine-year-old boy.
“Typically he’s a very happy boy,” his mother Jennifer Bohay said. “He likes to be tickled, he likes to jump on the trampoline, he reacts to funny parts in movies, just like any typical child would. He also throws temper tantrums like any other child would.”
But Tanner isn’t typical. Seven years ago, he was diagnosed with autism — and it’s classified as “severe” since he’s non-verbal.
That diagnosis presents a unique set of challenges for his mom, who wanted to share their story to raise awareness about the autism spectrum this April, which is Autism Awareness Month.
Autism is a neurodevelopmental disorder, with the main symptoms described by the Autism Canada Foundation as “problems with communication and social interaction as well as repetitive interest and activities.”
There are several types of diagnoses on what is called the autism spectrum, including Asperger’s Syndrome at the mild end and autism itself at the more severe end of the spectrum.
Current estimates are that in the U.S., one in 68 people — about 1.5 per cent — can be classified at some point on the autism spectrum. While no specific data is available for the Westlock area, Bohay said she knows of at least a dozen families in Westlock and the surrounding areas who have had an autism diagnosis.
It is by no means a uniform diagnosis describing the same characteristics for everyone who’s diagnosed — every individual displays their own unique set of characteristics.
“If you’ve met one kid with autism, you’ve met one kid with autism,” Bohay said.
She knew Tanner had some developmental and health issues relatively early on, as he was delayed in developing speech and had gastrointestinal issues — both common characteristics with autism.
At two and a half, he was diagnosed after a two-day screening process at the Glenrose hospital in Edmonton. For Bohay, who had some knowledge of autism after attending several conferences as part of her job with the Westlock Independence Network, the news didn’t come as a complete shock.
“I had taken several courses in autism prior to having kids; it was always an interest of mine,” she said. “I didn’t want it to be autism, but I wasn’t surprised when they diagnosed him.”
Once Tanner was diagnosed, the family began to look into what the root causes might be and what treatment options are available. Unfortunately, autism is still a little-understood condition, and the specific root causes aren’t known.
As for treatment options, Bohay said traditional medical strategies involve treating symptoms like hyperactivity, but there are really few options. So they looked elsewhere.
“Once he had his diagnosis we went to naturopaths, to homeopathic doctors, we did biomedical for a couple years,” she said. “Biomedical doctors take scientific testing to figure out what’s going on in the system rather than just treating the symptoms.”
That testing turned up some issues such as mitochondrial disorder and different vitamin deficiencies, which has been helpful — a combination of dietary supplements such as vitamin B12 and dietary restrictions, such as no gluten or caseine, has proven to be helpful in Tanner’s case.
While Bohay has heard all the theories about what causes autism, whether it’s related to diet or genetics or even vaccines, she doesn’t dwell on it but rather focuses on the task at hand.
“It doesn’t really matter. It just matters getting him to be a functional member of society now,” she said. “We’re working on communication and working on his strengths, trying to make it a positive and not a negative.”
A communication strategy that is working well for Tanner is the Picture Exchange Communication System, which allows Tanner some limited communication using a binder full of pictures of everyday items and actions.
While there have been challenges, Bohay said there are all kinds of supports available as well, which families facing this diagnosis might not realize are available.
“I think the biggest thing to help families understand is that they are not alone. When you start out on the journey, you think you’re alone,” she said. “No matter where they are on the journey, there are thousands of other families even in Alberta that are on the same journey.”
Bohay is chair of the regional parent advisory committee for Family Supports for Children with Disabilities, and sits as a board member on the provincial committee.
There are funding supports available through FSCD for some expenses related to autism, and parents can also claim a disabled dependent on their taxes.
More importantly, there is the physical and emotional support available to families — there is even a regular movie event in St. Albert geared toward families with autistic children.
The amount of support available in Alberta is actually some of the best in the country, Bohay said.
The Pembina Hills school division has also been supportive. Tanner is in a regular class at the school — with the assistance of a full-time aide — and has many friends in the class who look out for him.
“As those kids grow, that’s our next generation of acceptance right there. That’s been a huge focus for the last couple years, is helping the ones that are directly right around Tanner understand him more,” Bohay said. “But it goes beyond Tanner.”
She emphasized that the school has gone “above and beyond” to make sure Tanner is getting a top-notch educational experience.
Nonetheless, she faces some significant challenges on a day-to-day basis, in no small part due to misunderstandings about autism and just plain ignorance — to the point where she will sometimes dread a simple task like going to the grocery store.
Parents who might not realize Tanner has autism have said things like, “What a rude little boy” when he won’t respond to questions or social cues like making eye contact.
And even when she explains the situation, Bohay said she gets some rude reactions.
“I remember one person saying, ‘Oh, one of those,’ and walked away,” she said. “I try to increase awareness, but yet you’re kind of on tippy-toes with how people are going to respond to it.”
But for all the challenges, Bohay said she’s not interested in sympathy, just understanding. There are far more positives associated with Tanner than there are negatives.
“I love how when he laughs, he can totally make everybody around stop and laugh with him,” she said. “We relish that. I love when he says a new word. He makes me stop and appreciate all the little steps.”
And the whole experience has taught her — and everyone else around Tanner — a great deal.
“The biggest thing with Tanner is everybody who takes the time to actually get to know him, I think they learn a bit more about themselves because he has such a different way of looking at things,” she said.
For more information about autism visit www.autismcanada.org.
For more information about local supports, contact Bohay at [email protected]
