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11/09/2012

Kids with autism need help, but so do parents

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."

Comments

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As a single parent who has advocated for my children over the last 12 years, I can give a completely biased opinion to how others have treated me as a parent of autistic children.
The mental health of the parents has taken a back seat to our children's needs. It is unfortunate that the government systems that are in place to "help our children" have left us without many options. As a single parent I was told by several supporting agencies and respite services that my only option for before and afterschool care was to stay home. Really? Yes really. There are no supports in place to help special needs parents with "special needs childcare" AFTER the age of 12.
Life took its toll on me and I was forced to choose between taking care of my children or working. I was unable to handle the stress of doing both.
After a year had passed I found out about F.A.M.E.
They didn't know much about Autism but knew all about how families try to cope with mental illness.
Hmmm maybe someone needs to point this out to someone who could communicate this kind of support together with the Autism resources.
As an involved parent I have been asked by several friends, colleagues, strangers about some of the information/resources I have found over the years.
So even after the last 12 years, there is still a wait list, there is still newly diagnosed, there is still unanswered questions...I would have thought after all this time the information would get out alot faster.
Then again, here we are, with our local paper taking the Autism world and shoving it right out there.
BRAVO!

To mother above, you are very strong. I am not a single parent, but since my son cannot do things without me - my husband is a full time - over time working parent. I do not see him, but if I did, we wouldn't survive financially. I did my research, and have gone to many programs with my son since his diagnosis - from parent training, to one on one programs. About the spectrum being wide, I can agree. My son is right in the middle. He cannot function with "average" children or groups, and is not "severely autistic" enough to be in the intensive autism programs. Where does he fit it? makes it difficult for me and I fight for it everyday. We don't qualify for things because he isn't "severe" enough, but he has autism and that doesn't change. He can't do things more "average" children do or be in those "average" schools or programs. It's very mixed, because there are groups like Geneva Centre who are specifically focused on autism but I fear like you said, after 12...what's next? and I also fear when he is not with me now, what more....when he's older and doesn't have the proper support or no one to fight for him.

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