Midale mom strives to educate others about what autism means
Raising a child with autism isn’t easy. Having a community that doesn’t support you makes it even harder.
“We got judged so much for having a child that was different,” said Katie Emde of Midale. “It hurt me to my core.”
Not understanding what was going on, other kids gave her son Avery funny looks when he started kindergarten and parents said he shouldn’t be there, that he should be in a “special school” instead, she said.
That didn’t scare off the mother of three. In fact, it did the opposite.
Since Avery was diagnosed with severe non-verbal autism two years ago, Emde has grown to be an outspoken advocate for families raising children on the spectrum, including her own. In recognition of World Autism Awareness Day on Monday, she shared her story with the Leader-Post.
“It made us want to educate people and want to make things better,” said Emde.
Also known as autism spectrum disorder, autism is defined by Autism Canada as a “neurodevelopmental disorder that impacts brain development causing most individuals to experience communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour.”
Every child on the spectrum is different. Avery can speak very few words, eats a particular diet and enjoys sorting, organizing and colour co-ordinating everything from toys to Smarties. Sensitive to fluorescent lights, he has a hard time in grocery stores, usually having a meltdown when he visits one. But he’s come a long way, says Emde — he now knows about 20 words and is a very happy kid.
She said the hardest part about raising a child on the spectrum is navigating the system, especially in a small town where Avery was the only child affected by autism.
“Nobody holds your hand,” she said. “No one tells you where to go, what you should do.”
She describes raising a child with autism like a roller-coaster that you can’t get off.
“Once we feel like we finally, not fully understand, but somewhat have a grasp on what autism is in our life, something seems to change,” says Emde. “We constantly are on our toes.”
Avery is now seven years old and while they don’t have it all figured out, Emde and her husband have learned a lot. They share their knowledge and experience with families across the province who are struggling with raising children on the spectrum. Through email, social media and by phone, they have been able to connect with more than 600 families, doing everything from helping them with their diagnosis papers to connecting them with non-profit organizations that can provide support.
In Regina, the Autism Resource Centre provides such supports. Keely Wight, the organization’s executive director, says it’s important — especially on days such as World Autism Awareness Day — to learn about autism so people can recognize the value and joy that people with autism can bring to their community.
“One of the biggest misconceptions can be that maybe people with autism can’t work, which is absolutely not the case,” Keely said. “They often bring invaluable skills to the workplace, which we’re finding with a lot of the people that we support.”
The stereotypes don’t stop there. Thoughts of the idiot savant, such as Dustin Hoffman’s Rain Main, come to mind for many, but Wight says she would like to remind people that autism is a spectrum and people with autism “come with all kinds of skills and abilities just like the rest of us.”
Wight said taking a moment to educate yourself about autism is a great first step toward understanding, accepting and supporting children with autism.
While understanding in Midale has improved, Emde said they still have a long way to go.
Despite the challenges inherent in raising a child on the spectrum, she is optimistic about Avery’s future.
“We are the type of family that shoots for the moon in everything we do, including my own son’s journey,” said Emde. “I think that there’s a very high chance that (Avery) will find his ‘it’ thing, his hook in life, whatever it may be.”