Challenging How People Think about 'Normal'
Father of son with autism urges moving from inclusion to purpose-filled lifeWednesday, April 17, 2019
The Honourable Mike Lake’s Twitter account description neatly sums up his busy life: “Canadian Conservative Member of Parliament for Edmonton-Wetaskiwin. Shadow Minister for Youth, Sport and Accessibility. #Autism parent. @EdmontonOilers fan. (“Shadow Minister” refers to the fact that his party is not currently in power.)
What the words cannot convey is the extraordinary bond Lake shares with his 23-year-old son, Jaden, who has autism. Experiencing their love in person was the highlight of Lake’s April 15 presentation at Duke, “Expect More: An Autism Adventure,” an evening event recognizing Autism Awareness Month. Together, he and Jaden challenged how we think about the people around us, emphasizing that we all have unique abilities and challenges.
The Duke Center for Autism and Brain Development organized the event, attended by more than 100 faculty, students, staff, and community members. It took place in the Duke Institute for Brain Sciences, which also co-sponsored the event.
Before the presentation, Mike and Jaden sat down for a brief interview, accompanied by their friend Julie. Mike did most of the talking, but Jaden, who is nonverbal, nonetheless communicated his opinion quite effectively – his body language said, “OK, another interview. I’m going to tune out and play with my smartphone”—an activity familiar to any parent of a young adult.
The three had traveled to North Carolina by car, from Ottawa—a 12-hour drive—with a stopover in Washington, D.C. Most of us groan at the thought of spending so much time in the car but, Lake said, “Jaden loves the movement of travel,” so it’s an opportunity to do their favorite thing: spend time together. Nonetheless, travel can be wearying, so after a few minutes, Julie and Jaden departed for some pre-event down time. That left a few minutes to learn more about this extraordinary family.
Mike has been a global autism advocate since Jaden was a youngster. When asked what is most important to him about advocacy, Lake replied, “We want to challenge the way people think about ‘normal.’” Inclusion [of people with different abilities] is good, he said, but it’s not the ultimate goal.
“I want us to move beyond inclusion to contribution—to do a better job of unlocking each person’s potential,” he said. “OUR purpose is to help others find THEIR purpose.” As an example, he described Jaden’s work at his school library, where he separates books into piles and re-shelves them alphabetically—much more quickly and efficiently than his classmates.
That’s because Jaden excels at numbers and letters, especially when combined with concrete, understandable tasks. Shelving library books fills the bill, giving him both a purpose and a sense of belonging.
At the same time, Jaden experiences challenges in more abstract areas. “He doesn’t understand the concept of danger,” Lake said. He makes certain to hold Jaden’s hand when they are out, because if Jaden sees a large dog--he loves dogs—across the street, and he will immediately run to the dog without regard to oncoming traffic. “You can teach him to look left and right before crossing, but he doesn’t know how to estimate the speed of oncoming cars or the threat they pose if he crosses the street.”
Jaden also isn’t able to understand that not all dogs welcome an enthusiastic greeting from a stranger, or that it’s inappropriate to grab the ice cream off the top of another youngster’s ice cream cone, then eat it. If he sees something he wants, he gets excited and goes for it—for better or worse. When something like that happens, Lake takes it in stride, explains that his son has autism. The incident makes people aware of Jaden’s autism.
Jaden’s exuberance was on full display Monday night, as he high-fived nearly every audience member after the presentation. Lake let the audience know this was coming, and clued in everyone on the “only one high-five” rule. “Jaden only gets to give you one high-five,” Lake said. “Otherwise, he would keep high-fiving you forever.”
Asked what still surprises him after all these years of advocacy, he responded, “How much work we need to do around autism awareness.” Another surprise, he said, “in the best possible way, is how responsive people are to the message—how little convincing people take to understand the importance of understanding and inclusion.”
In 10 years, Lake hopes to see much more progress in reducing stigma and increasing awareness of autism around the world. One way to do that, he said, is to leverage the work being done by international agencies such as UNICEF. “We must reach out to the most vulnerable people around the world,” he said. His background in international development and banking made working with the Global Autism Partnership a natural fit. The group’s work centers on reducing stigma and, “helping individuals with autism and their families in a meaningful way.”
He also had some practical advice for parents just receiving their child’s diagnosis of autism: “Don’t be overwhelmed; just take it one step at a time.” He encouraged family members to reach out to support groups and organizations. “There is a lot of help out there,” he added.
In her welcoming remarks, Geraldine Dawson, PhD, Director of the Duke Center for Autism and Brain Development, echoed Lake’s positive message, describing the event as, “a celebration” of neurodiversity, the broader autism community, and the valuable contributions of people with autism to society. Dawson, an international expert in early diagnosis and treatment of autism, has known Mike and Jaden Lake for years, and praised Lake’s work as a global autism advocate.
“He and Jaden are amazing ambassadors for people with autism, not just in North America, but around the world,” she said. “His inspiring message reminds us all that we need to do more to make sure that people with autism are fully included in our communities and workplaces.”
Lake and Jaden stood together to begin the evening, and Lake asked his son to greet the audience. It wasn’t conventional, but Jaden’s greeting couldn’t have been more welcoming. When Jaden likes something, he lets you know.
Lake then told the audience more about Jaden and their life together, using video clips and stories. They documented Jaden’s progress, as well has how the public perception of autism has shifted from something that needs “a cure” toward Lake’s vision of acceptance and encouragement: “If there is anything he can do, I say let him do it. Give him a chance!”
Asked earlier what he does to relax from his and Jaden’s hectic travel schedule, Lake responded, “I like doing this with him, and he likes it. It’s therapeutic for him.” He did admit it was a “challenge to let myself slow down—there are always more people who need help.”
A key component of his life philosophy is summed up in a quote from the late John Wooden, famed UCLA basketball coach: “You can’t live a perfect day without doing something for someone who will never be able to repay you.” As the audience learned Monday night, Lake and Jaden are living as many perfect days as possible.
Pictures, below: Jaden demonstrating his trademark high-five with an audience member; Mike and Jaden Lake with Dr. Geraldine Dawson