By Chris Jones/The Oshawa Express
As the conversation about autism grows, Oshawa MPP Jennifer French hopes nobody gets left behind.
French, along with Windsor West MPP Lisa Gretzky, recently held a roundtable discussion with parents of autistic adults.
Gretzky is the NDP’s critic for community and social services.
“We recognize that when [there are children] over 18, many of our families are sort of pushed off a cliff,” says French.
She notes many young adults don’t receive some of the services they did when they were children. This may be due to no longer being in school, or various other circumstances.
“I have a sneaking suspicion that our local and individual stories are really true across the province,” says French.
For some of the parents, they worry about what will happen to their adult children after they are gone.
For others, they simply want their children to be in comfortable situations and close to them.
Parents at the roundtable said their sons and daughters have been in institutions, such as hospitals, which aren’t equipped to meet their needs.
Christina and Michael Durack shared the story of their son Kiel, 23, who is diagnosed with autism.
Kiel, at 6’3” and 290 lbs., is strong according to his parents, meaning the Duracks need two workers to help them.
The biggest concern for the couple is what will happen to their son after they are gone.
They are hoping to build Kiel a separate apartment in their backyard, but their financial situation is a challenge.
Michael points out much of their debt is from expenditures related to Kiel’s needs.
They’ve also remortgaged their house before to help cover the costs.
The Duracks have received funding to take care of Kiel, but say they want to be able to give him his own space to be his own person.
“[He needs] his own space where he can do what he wants, be his own person, and basically live out his life in his own neighbourhood,” said Michael.
The funding they’ve received includes individualized funding (IF) and Passport funding.
IF and the Passport program help adults 18 years or older with a developmental disability to take part in their communities.
Michael says everybody knows Kiel in their neighbourhood. During the winter, he uses a snowblower to help the neighbours to clear their driveways.
His parents also plan to get him a lawnmower to help out the neighbours by cutting their grass.
Kiel is non-verbal, but he does what Michael calls “singing.”
“We had a neighbour who let us use their pool, and he would be in the pool for hours on end, and he’s non-verbal, so he makes noise…, and it’s like a singing voice, and they said ‘We miss him singing in the pool,’” said Michael.
He notes while most neighbours understood and were respectful, others would call demanding Kiel be quiet.
“The community in our neighbourhood know who he is. They know his loudness, or lack-thereof,” he says.
Michael notes his son is waiting for many different programs, but it isn’t happening in a timely manner.
“[One organization] has helped us. They’re putting us forward for all of these different programs, but we’re finding it’s not happening fast enough because any government moves slowly, and by the time we get to a point these people are in, we may have been able to raise funds, and do it on our own,” he says.
Many adults who live with autism face different struggles from Kiel.
One parent, who wished to not have her name published, had to place her daughter in a psychiatric intensive-care unit for the past nine months.
She described her daughter as “in diapers, non-verbal, aggressive, self-injurious, destructive.”
“I didn’t want to go to hospital because I had been there two years ago, and it’s not an appropriate environment for somebody with autism, so I was trying to avoid that route,” she says.
But circumstances forced her hand as her daughter’s violence had increased.
Tammy Linklater, who was at the roundtable with her son, Damion, said he spent time in the hospital as well, and she did not believe the workers were equipped to take care of him.
Both Tammy and Damion believe changes need to be made so resources are more readily available for adults living with autism and their families.
“We have to come up with a plan to support the families and our youth and young adults who are kind of being tucked away, and we don’t have the strategy provincially that we deserve,” says French.