An alum's efforts to help autistic people and their families be active
For Zita Dube-Lockhart (Personal Fitness Trainer ’16), the hardest and most important day of her life was when her son Samuel fell to the ground flailing and screaming at an outdoor Edmonton festival in 2014.
Samuel, who was 3 years old at the time, has autism. He doesn’t speak and he jumps constantly. He’d become overwhelmed at the festival, and Dube-Lockhart struggled to carry him up a steep hill to their vehicle so they could return home. She was stressed and out of shape, and weighed about 275 pounds. It was then that she realized something had to change.
“It occurred to me in that moment that my child, who was in complete crisis, was always going to need me to pick him up,” says Dube-Lockhart. “Always. This was our normal. And if it was going to be our normal, I was going to have to do something dramatic about my health.”
"I was going to have to do something dramatic about my health.”
She began a strength-training program that would see her lose more than 100 pounds (45.4 kilograms), then realized she wanted to make a profession in fitness and well-being. Dube-Lockhart quit her job as a business consultant and enrolled in NAIT’s Personal Fitness Trainer (PFT) program with the ambition of making a difference for other families dealing with autism spectrum disorder, a lifelong developmental disorder that can include challenges to communicate and interact with others, repetitive behaviours, rigid interests and sensory sensitivities.
Three years after that day at the festival, Dube-Lockhart is using her experience and her fitness training to try to make that difference.
She is the creator of DiversiFit, a wellness program designed for autistic people and their families. Developed during her studies at NAIT, DiversiFit is unique in Edmonton for its multi-faceted focus. It teaches trainers how to address the needs of people with autism, and gives their clients an opportunity to experience all the physical and psychological benefits of physical activity.
Just as importantly, however, it includes their families, emphasizing the need for them to manage their own well-being. DiversiFit attempts to help caregivers of people with autism achieve the same sort of transformation Dube-Lockhart experienced, and help it come from something positive rather than a crisis.
“No one is going to do it for us”
The DiversiFit concept (with “Fit” standing for family-integrated training) had already begun to take shape in her mind when Dube-Lockhart enrolled in the PFT program in 2015. As she formalized her plan, DiversiFit also began to take shape in her coursework. “I absolutely could not have designed it without the formative support of the PFT team.”
“My motivation was to fill a need and to help empower families [with] the knowledge, the resources and the skills needed to live healthier lives, because the reality is no one is going to do it for us,” says Dube-Lockhart, who’s now 36 years old.
There’s a strong need for increased health and wellness programs for this population, says Brooke Pinsky, support services manager with Autism Edmonton, a non-profit that assists autistic people and their families. According to the Centers for Disease Control and Prevention, one in 68 children has autism. Obesity rates within this group are about 32 per cent; within the general population, it’s 13 per cent.
“The family component is very important,” says Pinsky. Specialized activity programs typically only target individuals with autism. Assistants are frequently required, adding expenses for families that often prove prohibitive, as many of them are households in which one parent works while the other takes on the provision of extra care.
Many of Dube-Lockhart’s autistic participants had previously tried community sport and fitness programs but often experienced anxiety, says Pinsky. The DiversiFit pilot would prove to be different.
Supported by NAIT instructors and Autism Edmonton (and a $10,000 GoodLife Kids Foundation grant that allowed the program to be offered at minimal cost), Dube-Lockhart piloted the program for seven weeks starting in February 2017. The 68 participants, including 22 individuals with autism, were found through her personal network and Autism Edmonton.
It included a mix of fun physical activities, such as obstacle courses, for one hour every week at No More Excuses, an Edmonton fitness studio. Dube-Lockhart also provided in-home training for families who struggled to make it to the gym. She ended all sessions by sharing information on a range of topics, including nutrition and goal setting, and even provided an exercise manual and equipment so exercise could continue at home.
The pilot was meant to help participants and their families regain a sense of ownership over their health together. “One thing we did determine was that having a caregiver and siblings actively involved was critical to help the family continue to be physically active after the program,” says Pinsky.
"By the end of the sessions, everyone was participating in their own way to the best of their abilities."
After surveying participants, Dube-Lockhart found that 100 percent of respondents (90 per cent of the surveys were completed and returned) felt it was a positive experience. “At the start, I had kids who literally told me ‘I don’t want to be here’ and refused to come into the room,” she says.
“By the end of it, I had them doing yoga. By the end of the sessions, everyone was participating in their own way to the best of their abilities. It was awesome.”
A fundamental part of life
PFT instructor Lorraine Glass was so impressed with Dube-Lockhart’s program she arranged for three of her students to do their practicums with DiversiFit’s pilot. “You’re instilling health and wellness from the ground level,” says Glass.
For some parents, the benefits for them and their autistic children were eye-opening, says Dube-Lockhart. Many were living sedentary lives.
“What struck them was that their needs had to be accounted for as much as their children,” she says. “You have to put your own oxygen mask on first.”
Mel-Sue Bakke says that, prior to DiversiFit’s pilot, activities usually revolved around the interests of her 10-year-old grandson, Ayden. Often, that meant going to a playground or classes where she would sit and watch.
“This is a place for you to come and share this experience with your kids, which is great,” says Bakke, who has been raising her grandson for the past five years. “Because sometimes it’s hard to build relationships with these kids and find something you can do together and have fun with them.”
It was good for both of them, she adds. Ayden laughed and engaged with kids in an environment where there was no need to worry about his behaviours being misunderstood. And Bakke continues to work out three times a week.
“I didn’t realize how good I was going to feel. I feel great.”
With the pilot program over, Bakke longs for a future in which Ayden can continue to have a welcoming place to exercise and find an accepting community as he gets older.
DiversiFit may be one option. The program will run for another year with themed workshops starting in November and weekly sessions starting in January, thanks to a No More Excuses fundraiser for Autism Edmonton, which will fund it. Dube-Lockhart has created an adult-specific program in addition to the family program. One day, she’d like to see DiversiFit offered in other cities. Finding a way to make health and fitness accessible for a lifetime is vital, says Dube-Lockhart.
“Autism affects an individual but impacts a family,” she says.
Her own son, Samuel, is still too young for the program (though he has attended with his four-year-old sister, Charlie, and their father, who helped run the sessions). But, being active is a value Dube-Lockhart shares with Samuel at home. It’s part of his life.
It’s a fundamental part of hers now, too. “I learned that my self-care is every bit as important as his,” says Dube-Lockhart.
“I am a better parent. I was so very lost and drowning in the idea of it all … the stereotypes and the stigmas and the fears and incessantly being told how difficult my life was going to be. That’s not my experience now. We have a really functional, happy, well-established family unit.”
A matter of identity
Until a few months ago, Jackie Ryan thought she understood the best way to refer to someone who has autism.
The director of teen and adult services at the Centre for Autism Services Alberta used person-first language, such as individuals with autism rather than autistic individuals. Many professionals continue that practice.
However, Ryan changed her mind after Centre adult advisers advocated for the use of autistic individuals during a meeting in June, 2017. “Nobody is more surprised by that than me.”
She researched the topic, which is close to her outside of work. Her adult son, Sean, has autism and she was diagnosed three years ago at age 53.
“It’s been hard for me to get there because there’s so much stigma still attached to that. But it’s part of taking back ownership, and destigmatizing that label is to own it and be proud of it and not hide it behind something else. Because most people who are autistic will say that being autistic is essential to who they are.”
For Zita Dube-Lockhart, there is no question about how to refer to her son, Samuel.
“There is no Sam without autism,” says Dube-Lockhart. “All information that he takes in, he takes in through the lens of his neuro-divergent brain. So what message are we telling him when we say that autism doesn’t define him? Of course it does.”
Nevertheless, people with autism spectrum disorder who are able to share their preference should have it respected, says Ryan.
“Whoever has the label gets to decide.”