Living in limbo
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Jan 15, 2014  |  Vote 0    0

Living in limbo

Stratford Gazette

Chet Greason

Single mom Erin Jackson of Stratford and her nine-year-old son go for groceries.

Her son exhibits qualities typically found on the autism spectrum. His heightened sensory system, coupled with a lack of natural controls that help to manage sensory-related stress, leaves him prone to sudden and sometimes violent meltdowns.

On this particular day, Jackson and her son walk through the automatic doors of the grocery store. A blast of warm air hits them from the overhead vents, and her son’s already precarious nervous system can’t handle the sensory overload. He collapses into a screaming fit.

A passing couple mutter just loudly enough to be heard, “That kid looks like he needs a good slap.”

Reported cases of autism, a neurological disorder that affects the functioning of the brain in various ways, have been slowly rising.

Being a parent is stressful. Being a single parent is even more stressful. Being a single parent with an autistic child must be unfathomably stressful. Though Jackson loves her son; he consumes all of her focus and energy, and she needs help.

Most would agree there should be respite for parents like Erin Jackson, and our system is set up, in theory, to provide assistance in these most stressful of cases. But is the system delivering?

According to a 2013 report issued by the office of the Auditor General: No.

A three year wait

The Auditor General’s annual report states that, in Ontario, there are more children with autism waiting for government-funded services than there are children receiving them.

In order to receive these services, a child must first be officially diagnosed with autism. The Canadian Paediatric Society suggests screening children for autism between the ages of 18 and 24 months; however, the Auditor General’s office reports it’s estimated children with autism are diagnosed in Ontario at a median age of a little over three years.

The report further states that intensive behaviour intervention (IBI), the most common government-funded behavioural therapy, has shown to have the best effect amongst children showing mild autistic tendencies while under the age of four; but “due to long wait lists for IBI services, children are not typically starting IBI until almost age seven in Ontario.”

This was the case with Jackson’s son. She first noticed certain signs that indicated there might be a problem before he turned two, such as hyper-focus, a tendency to organize things, and massive meltdowns.

“It’s really hard to find out where to go,” says Jackson of the initial phase of seeking a diagnosis. “There’s no clear starting point except calling your doctor. It’s all you can do.”

Her doctor suggested a paediatrician, which meant a three-and-a-half month wait. The pediatrician told Jackson there was a possibility of autism, but was unwilling to diagnose fully and referred her to the Child and Parent Resource Institute (CPRI) in London, Ont.

A great deal of paperwork followed. Jackson was first asked to fill out a form explaining why she was seeking an assessment. Once that was received, she was sent another extensive package of forms to fill out. Those submitted, mother and son had to wait an entire year just to see a speech pathologist for a meeting that lasted, according to Jackson, “two and a half to three hours at most.”

Eight months later, her son received more tests, including psychometric and communication evaluations. In total, it took three years from their initial visit to the doctor to receive a diagnosis, and even that left much to be desired.

“They said he had spectrum tendencies, but they didn’t think he’s on the autistic spectrum,” says Jackson.

The only official diagnosis they’ve been able to get is attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), and anxiety, despite symptoms both Jackson and her son’s psychiatrist feel indicate Asperger syndrome.

“I was told if he’s regressing, losing skills, I could have him reassessed, but we’d be back on the waiting list.”

Jackson says her son’s age might have played a factor. Had he been formally tested when she initially sought a diagnosis, he would have been tested using methods geared for toddlers. However, since three years passed until most of the testing was done, her son was  too old for toddler evaluations. But he was also too young for primary school-aged testing.

“We were told he would benefit from IBI, but we can’t get it without a diagnosis,” Jackson says.

The right direction

Doris Barkley, past president of the Huron-Perth chapter of Autism Ontario, an organization that funds activities, respite, and other services for families with autistic children, says she was not surprised by the Auditor General’s report, as cases like Jackson’s are all too common.

“I don’t understand. I don’t know why it took three years,” she says about Jackson’s wait.

Barkley says large facilities like CPRI, or the similar Thames Valley Children Centre (TVCC), also in London, might simply be too big, with families getting lost in the red tape. She wonders if families would benefit from “smaller, more personalized centres.”

Like the Auditor General’s report, Barkley stresses the need for early diagnoses so that beneficial therapies can be done during a pivotal phase in development. She also points out the need for equality in services across the province.

“Some places, treatment will cost $30 an hour, others $100. There’s no consistency,” she notes.

“It’s a big project for the government, but it has to be done,” she says of the system’s reformation, adding the Auditor General’s report is “a step in the right direction.”

Crisis mode

Unfortunately, the issue surrounding autism services does not begin and end in the early stages of life. As Barkley observes, “autistic children become autistic adults.”

Barkley’s own son, now 16, was diagnosed autistic and received the treatments he needed. However, what money he is allocated by the government for support, he’ll lose once he turns 18. While he can stay in high school until the age of 21, Barkley will have to reapply for funding, which has her scared in case he proves too high functioning for continued support.

“But can he drive? Will he have a high paying job? No,” she says.

This is an issue facing many parents of children with disabilities, and not just autism. A huge number of adults with disabilities have no options or funding available to live anywhere but at home with their parents. And as these parents are aging, many families are entering crisis mode.

Stratford mother Susan (whose real name was withheld by request) is experiencing this exact same problem with her 20-year-old daughter who, had the same criteria existed in the 1990s, might have been diagnosed autistic. However, Susan says the autism spectrum at the time was much narrower, and her daughter was instead diagnosed as having a global developmental delay, a generalized term for any number of intellectual disabilities.

Not to be discouraged, Susan hired a private tutor out of her own pocket to take her daughter through applied behavioral analysis (ABA), a similar behavioral therapy to IBI.

Susan was able to secure some government funding by submitting a plan when her daughter was 12. It took three years for the funding to come through. Susan plans on submitting another, updated plan after her daughter turns 21 next year.

“I’m trying to show (those at Queen’s Park) that if the government invests in my daughter, it will pay dividends. The more skills she has, the less it will cost to support her,” she explains. “If I throw my hands in the air, it will cost $200,000 to support my daughter. But if they invest in the right way … maybe she could live with a roommate or two, where the same money would see two or three people supported.

“It’s not just money for nothing,” Susan says. “There’s a return for the economy.”

Endless potential

Meanwhile, the Auditor General is calling for change within the Ministry of Children and Youth Services, demanding a re-evaluation of its autism program in order to “optimize services and outcomes for children with autism.”

Doris Barkley advises anyone who thinks they may have an autistic child to read as much as possible about the disorder.

“There are over 100 books about autism at the Stratford library,” she says, adding connecting with other families is another integral way parents can fight isolation and despair.

“I swore my son would never read. Now he’s an avid reader,” she says. “I never thought he’d hug me and say, ‘I love you, mom.’ Now I hear it 20 times a day.

“Just keep dreaming, though it’s going to take a lot of love and a lot of repeating.”

Erin Jackson is still chasing that diagnosis. She was able to secure some respite care when her son was five through the Children’s Mental Health Fund. At that time, she couldn’t get it from the ministry’s Special Services at Home or Assistance for Children with Severe Disabilities programs due to the lack of a concrete diagnosis.

She credits a very knowledgeable and driven educational assistant at her son’s school with helping them navigate the labyrinthine Ontario disability system.

“I’m floored by the resources we received that others didn’t have,” she admits.

Jackson describes her experience dealing with the system as “a roller coaster.”

“It seemed like everyone would just kick us over to someone else. They’d say, ‘We can see there might be potential to be this or that, but maybe you should go see these people.’ That’s what I’ve been doing for six or seven years!

“If we were to get an Asberger diagnosis, we would be open to getting IBI or ABA treatments. Anything to help him be successful in learning and in life is what I want for my son.”

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