On the Southwest corner of a windswept, rocky island province in the North Atlantic two women sat a kitchen table, oblivious to the fact that they were on the cusp of developing a grassroots movement.
One of the women, a mother with a child on the autism spectrum, was feeling a bit lost, lonely and overwhelmed. Her companion was Joan Chaisson, a retired educator who was working with the family as an Applied Behaviour Analysis ( ABA ) home therapist.
The mother could not have picked a better confidante with whom to share her frustrations. Although Chaisson did not have any autistic children of her own, what she had was an in-depth understanding of the challenges the mother was facing and an innate passion for helping.
Chaisson had been teaching since 1979, a career she more or less fell into after listening to a pitch from a pair of Grenfell College recruiters who visited the vocational school she was attending. Before then, she’d had no intention of getting a college degree.
After graduating from high school at 17, Chaisson killed time at the vocational school in Channel-Port aux Basques, taking clerical courses for a year while waiting to turn 18, at which time she intended to get her permit to start driving school buses for her father’s company.
Once the college recruiters left, Chaisson went home and told her surprised parents that she was going to attend colleges and become either a teacher or a minister. Years later she would make another compulsive but critical decision to study again, traveling to Harlow, England for two semesters to study teaching.
That decision not only made her an invaluable resource for the small community schools on the Southwest Coast of Newfoundland, it kept her constantly employed in a sometimes volatile and uncertain field.
Not long after retiring in June 2009 Chaisson began working one-on-one with a child on the autism spectrum, something she dearly loved. A visit from her son, who lived in Alberta, prompted her and her husband to relocate to Calgary. Once again she took a private job working with a two year old boy named Michael.
Under her care, and in addition to working with a Speech Language Pathologist, Michael made enormous strides. At age nine he achieved gold medal status in the Royal Conservatory of Music for playing the piano in all of Alberta and Northwest Territories in his age group and against neurotypical peers.
During that time in Calgary it wasn’t just Michael who was learning. Chaisson continued to train, taking advantage of resources in the city that were not readily available in small town Newfoundland. Just answering questions from Michael’s parents, one of whom was a doctor, required copious amounts of research about autism.
She spoke at length with other professionals working in the field of autism, absorbing what she could from them. She worked with Michael in a daycare environment and took advantage of Calgary’s autism resource facilities. Eventually she grew confident that much of what the big city could offer children on the autism spectrum was perfectly achievable, albeit on a smaller scale, in rural Newfoundland.
Despite that belief it wasn’t her intention to co-found a group for parents.
Upon her return to Port-aux-Basques in September 2012 she resumed working privately with the little boy she’d left before her move, resuming her strong friendship with the family, which is how she came to be listening to this mother’s concerns one afternoon.
This wasn’t the first time the mother had told Chaisson how she felt about the challenges of caring for a child on the autism spectrum. By now these chats between the two women had become almost part of their daily routine.
In Newfoundland and Labrador 1 in 57 children are diagnosed as on the Autism Spectrum Disorder (ASD), which is higher than the Canadian national average of 1 in 66.
Simple tasks that most families take for granted, like dining out or going to the doctor’s office, were logistical nightmares that left the young mother feeling exasperated.
Both women knew that there were other children in town on the spectrum, and it was likely that their parents and caregivers were also experiencing similar challenges and frustrations.
The two wondered if other parents or caregivers would come to a meeting to chat about their private struggles and frustrations. After discussing the possibility, the women decided to write a post on social media to investigate if there was any interest in forming a support group.
Like many smaller communities in the region, a lot of local events or activities are posted on a town’s unofficial Facebook forum page. On January 27, 2013 four people showed up to the first support meeting for parents of children on the autism spectrum, and Autism Involves Me (AIM) was up and running.
Under the mother’s guidance, parents were soon able to meet regularly to share experiences, challenges and offer solutions as well as gain support and learn from others. The experiences they shared were varied and prompted by the parents themselves.
Emotional and practical support for local families dealing with the daily frustration of living with autism was initially the group’s only real goal and remained its key focus for the first few years.
Parents not only shared their own experiences, but also learned through prepared workshops about such things as dietary needs and sensory needs, or how to recognize the differences between a tantrum and a full meltdown.
Some of the group’s meetings offered practical solutions, like how to help their children develop more gross motor skills before they stepped into a school environment that involved physical education classes.
With her background and resources, Chaisson would research for possible solutions to the parents’ challenges, offer tips and discuss any frustrations that may occur in public environments and share new books and resources at each meeting.
Members of the group also kept records of the struggles they encountered whenever venturing outside the home with their children, and the notes helped shape future workshops.
Caregivers who had felt alone and overwhelmed were now coming together in a safe and confidential space to build friendships and support networks. In Chaisson, they were also benefiting from a retired educator with a significant amount of training, creative thinking and practical experience to help them develop practical solutions.
“I did not have any children of my own who had autism, but I learned to listen to parents when they were talking about their experiences and challenges,” says Chaisson. “I had the time, energy and ability to meet with people, work together as a team and I learned to accept criticism.”
The group continued to gain traction as grandparents, educators and resource workers began coming to the meetings. They created their own Facebook group to exchange toys and resources, offer advice and support, celebrate milestones, upload photos and keep each other up to date with the progress they were making. Like parents everywhere, they just wanted their children to grow up safe and happy and they were willing to do whatever it took to make that happen.
There was no intention to build a community model for other towns or community groups to emulate.
“It was just to have a community where our children would be happy living,” says Chaisson. “This has grown into something much more.”
This small group of caregivers, educators and resource workers were not only about to change their own lives and that of their children, but also change the region itself to such an extent that even the rest of Canada noticed.