‘Worst kind of helplessness’: Family struggles to find support for autistic, self-harming teen
A northern Ontario family is desperately searching for help after being told their severely autistic, nonverbal teenage daughter will not be able to return to her community care residence because of self-injurious behaviour.
Robyn Webster, 15, recently hurt herself so badly that she ended up in hospital.
“As her mom, I can’t even put into words what it’s like to look at your child hitting herself in the face,” Robyn’s mother Michelle said.
“Swelling, bruising, breaking her nose multiple times. Knowing that she desperately needs something and wants something, and with no way to help her it’s the worst kind of helplessness ever.”
Robyn was receiving 24 hour support at a residence in North Bay, Ont., run by Hands: The Family Help Network through a one year financial grant of $181,804 from the Ontario government.
Robyn began to transition into the facility last June, but only moved in on a full-time basis last December.
Five months later, The Family Help Network began the process of terminating Robyn’s placement on May 15 because the administration said she needs a higher level of service.
“It felt cruel,” Michelle said.
“We are incredibly shocked to hear that that was the approach they were taking upon the first time that she ran into crisis when we had done our best to advise them that this was most likely going to come their way.”
Robyn was diagnosed with autism at 18 months, according to Michelle, and started to self-harm when she turned 11.
Robyn lost her vision in her right eye due to self-injury, and can at times become aggressive towards others.
“[It’s] very much like being on the inside of an abusive family,” Michelle said.
“It’s out of context because it’s a child against parents, but in essence that’s what my other children are watching. They’re watching their sibling very seriously hurting their parent. They’re watching their parent engage in physical confrontation with one of their siblings. It is not mentally healthy.”
‘No way to keep our family safe’
The Websters said they cannot let Robyn live at their home anymore.
“There was no way to keep our family safe,” Michelle said.
“It was leading to the breakdown of our family. A breakdown of our marriage … We are desperate to keep our family together.”
Hands was also challenged by Robyn’s condition and that is why the organization is recommending that she seek other support for her “high intensity” needs, according to Hands executive director Jeffrey Hawkins.
“We’ve worked our darndest,” Hawkins said.
“We’re disappointed and we’re sorry that new circumstances evolved.”
It is not clear if there is a setting available in North Bay to support Robyn’s needs, according to Hawkins, but he said his health network will be working with the family on a transition plan.
Family help network ‘not abandoning’ Robyn
“We’re not abandoning, but we’re putting the interests of the child and youth at the forefront, and we’re staying the course,” Hawkins said.
“As long as they [Robyn’s family] want us to be part of it, we’re prepared to be there.”
The provincial funding that was given to Robyn will either follow her to another facility or be returned to the government, according to Hawkins.
“My sadness comes from the fact that for some reason it seems justifiable to withdraw care based on level of need,” Michelle said.
“We define our society by how we treat our most vulnerable. If that’s any definition of the kind of value we place in people like Robyn, than I am really, really sad.”
Agencies that work with children on the autism spectrum are stretched to their limits, according to France Gelinas who is Ontario NDP health critic and Nickel Belt MPP.
“Those children fall basically through all the cracks possible,” Gelinas said.
“Their parents become responsible for those kids and most of the time it ends up with finding a home far away, always in southern Ontario … I don’t understand. We have so many of them having to go down south, why don’t we build those resources up here?”
Autism assistance lacking: MPP
The provincial government recently announced an overhaul to Ontario’s autism program that will allow people to choose between government-funded services or receiving funding to pay for private therapy, but Gelinas said she still feels families in rural, northern areas will be “shortchanged.”
“Between what was announced and what’s actually being rolled out and what we can see on the ground, there’s a big gap between the two,” Gelinas said.
“We owe it to every child to give them a chance to achieve their full potential and I know that the children up north that have high needs are not getting that.”
If possible, Michelle would like to keep Robyn near her home in North Bay, as she is not convinced the services in southern Ontario are much better.
‘This is so much bigger’
“I’ve spent 15 years advocating for my daughter and collecting this great community of people who are willing to fight for her,” Michelle said.
“If she’s living outside of North Bay, I have to start that process all over again.”
Michelle blogs about her journey with Robyn on Facebook.
She worries about what services will be in place in the future for people who have conditions like her daughter’s.
“There may not be a happy ending to our story, but this is so much bigger,” Michelle said.
“The statistics for kids with autism are one in 68 now. One in 68. So how does that play out when these kids get older? It’s not going away. It’s only going to get worse … There will always be the Robyns in this world. There will always be people that need that level of care.”