Rupertites may have seen white and blue signs pop up around the city, providing exposure to “one of the fastest growing disabilities in Canada”.
That disability is autism. Here in Prince Rupert, it’s certainly top of mind for residents after the four-day coroner’s inquest held in early October 2015 dissected the events that led to the deaths of Rupert residents Angie Robinson and her autistic son, Robert.
This past Saturday, Autism Speaks Canada and Parents for Positive Change hosted a community-wide walk for awareness and fundraising for the disability, especially for young children or teens who live with autism.
Organized in part by Symbia Barnaby and Kim Pilfold, two mothers with children living with autism, the walk brought together residents across the city, some for the first time, and helped establish a network of support for families – something sorely lacking last year, even with the list of 24 recommendations by the inquest’s jury which were supposed to come to fruition to make things better on the North Coast.
“What we’re noticing now is the support services are fragmented,” said Barnaby, who said that she was in the very same situation as Angie Robinson 18 months ago. She was on the brink of taking her own life and with it, her unborn child’s, had she not sought help with her daughter, Arisa, now 12 but diagnosed with autism at 10.
“My spirit was broken – there was such a lack of support and qualified support,” she said.
Over the past two years, Barnaby helped found Parents for Positive Change, a community-based support organization that meets regularly to navigate the strenuous red tape, paperwork and travel arrangements that is necessary for a parent needing help with children dealing with the disability.
Even to be diagnosed with autism, Barnaby and Pilfold said that families must travel as far away as Prince George for autism assessment.
Pilfold said she was lucky that Rupert had a professional who was able to notice the signs in her four-year-old son.
“My son was just diagnosed in December ... and we were lucky enough to have people who recognize signs here (speech pathologist), but then you’re referred and you have to go to Prince George. Then your child’s assessed and you get a package that [other than telling you to] go to the Ministry of Children and Family Development to get autism funding, that’s it. It’s a very basic package, there’s no guidance, no names or phone numbers to contact,” said Pilfold, who added that for children to even qualify for some services, they need to have certain qualifications like being removed from their parents’ care.
The biggest hurdle that Barnaby and now Pilford (the two met as colleagues) face is service coordination. While Prince Rupert may have facilities that can handle the needs of autistic children, often utilizing or even finding their services is a task in itself.
“Kitimat has all these services in a one-stop shop, whereas Rupert has speech and language in one, mental health and child and youth special needs in another, pediatrics and physical therapy in the hospital,” said Barnaby.
Not only thinking about their own children, Parents for Positive Change (PFPC) is advocating for those yet to be diagnosed, most of whom have no organized voice save for the support group, as well as those living with brain injury or fetal alcohol syndrome (FAS).
The support organization had on hand over 75 binders to hand out freely, one of PFPC’s pilot projects, which includes dividers, business cards of area specialists and documents pertaining to autism, which can be constantly updated as a living document and brought to medical appointments by the family as a personalized information resource.
“With this binder, we’ve navigated some of these things, we’ll coach you through it,” said Barnaby.
Things are progressing and there are signs that awareness is growing as autism affects more and more of a significant portion of the population, but more can always be done, said the group.
A more thorough individualized plan in class that follows the student and doesn’t require the parent or caregiver to fill out new forms every year, a centralized service facility and literary material at the library are some ideas that the group has and will continue to advocate for families living with autism. PFPC have distributed the binders to the four major service providers that they work with: the schools, the judicial system, the health authority and social services.
“We’ve got new players coming in,” said Barnaby who said she had a discussion with Northern Health’s health services administrator Michael Melia about centralizing strategies and streamlining protocols.
Anyone looking to contact PFPC or looking to volunteer can email the organization at pfpcrupert@gmail.com or through its Facebook page: Parents for Positive Change.