At sea without a paddle. Lost in a maze. Roaming a foreign country where you don't speak the language and don't have a map. These are the kinds of analogies that routinely pop up when parents describe what it's like being thrust into the world of autism after a child shows signs of the neurodevelopmental disorder.
And this is terrain that McMaster University PhD student Stephen Gentles is exploring in one of the few studies to focus on challenges faced by parents as they navigate an overburdened and complex system of autism supports and services.
Halfway through the two-year project, the theme is clear: "Having to make your own way" was cited as the biggest hurdle by the 20 parents he has interviewed extensively. The research will include 30 parents from the GTA and outlying regions who have a child under 12 diagnosed within the last five years.
Other obstacles include wait lists, "having to fight for everything," high stress and not being able to find appropriate information about what to do next and what their child needs most.
Gentles, from the Faculty of Health Sciences, has created a flow chart that tracks the problems, starting with the early pre-diagnostic stage when parents first notice developmental problems in a child, through assessment and diagnosis, and finally the process of trying to access services funded by the province.
These parents have the most acute need for facts, says Gentles, because the autism spectrum is wide, the disorder is complex and there are myriad ways it manifests at different stages of life. These kids have multiple needs but each child also responds differently to specific interventions. There are few rules of thumb.
At the same time, parents face a baffling system of publicly funded and private agencies, centres, research hubs and medical facilities that provide services but may also have long wait lists, protocols and application forms.
"There's a kind of fear based on having insufficient information," says Gentles, whose work is being overseen by a team that includes renowned autism researcher Dr. Peter Szatmari, a McMaster professor and director of the Offord Centre for Child Studies in Hamilton.
"That motivates parents to move into high gear and ramps up the sense of urgency to keep looking."
It also takes a toll - on mental health, marriages and other children in the family.
Gentles hopes that highlighting the problems will lead to solutions, whether through better coordination of services or case managers to help guide families.
"Parents who've experienced the system know it could work better."