Searching for support
Mother of autistic boy says abrupt halt to services and supports was jarring
Editor’s note: This story is part of a series by The Chronicle Herald about the education system in Nova Scotia.
Hugh Garber is almost nine years old, and he can’t quite decide what he wants to be when he’s finished school.
“I want to be a superhero when I grow up, and also a chef,” says Hugh. “I can change my mind right?”
Crime-fighting and cooking are just two of the things that Hugh is interested in, so thankfully the answer is yes.
“He goes from wanting to be a school principal, to an author, to a professional gamer,” says his mother Allison. “There’s going to be a really wonderful place for him in this community as he gets older.”
Hugh attends Basinview Drive Community School in Bedford, where he’s starting Grade 3.
“I am excited about Grade 3. I’m also nervous because it is a new teacher. Is it okay to be nervous? I think it’s OK to be nervous.”
It’s hard to imagine, but when Hugh was between the ages of two and three his parents noticed that he was having trouble communicating with others. He was verbal, but he was difficult to engage with.
“We noticed there was no back and forth communication with Hugh, he was just talking about the same repetitive things over and over,” says Allision. “It became evident to us that there might be an issue that we might need to check out.”
At that age, it can be hard to separate behaviours typical of average youngsters from those that could indicate a developmental disorder.
When he turned four Hugh received a private assessment and was diagnosed with autism spectrum disorder.
ASD ranges in severity and symptoms from person to person, but it is generally associated with challenges in social interaction, communication, and other behaviors that, without supports and intervention, may hurt someone’s ability to function in school, work and at home. The early intensive behavioural intervention program at the IWK gave Hugh and his family access to services which included speech language pathology and occupational therapy, but these programs stopped once Hugh transitioned from the Department of Health, and into the Department of Education.
“It was a significant shift,” says Allison.
The abrupt halt to services and supports that the Garbers were accessing was jarring for Hugh, who over the previous two years had grown accustomed to the regular rhythm of the programs that were helping him.
Despite his diagnosis being on file with the school, it would take almost six months for Hugh to receive any kind of speechlanguage service or in-class oneon-one support.
“We call our system inclusive, but unless you’re in there fighting tooth and nail then my child and other children like him are not getting the same access to an education as typically developing children.”
Inclusivity is a service that requires a lot of communication between the departments of education and health, as well as the individuals within the school that participate in a child’s education. From principals to educational assistants, to all the specialists and teachers in-between, there is a long list of people who are involved.
And then, the information must be relayed to parents.
“Teachers and administrators really wanted to have the opportunity for ongoing communication with parents to learn about anything that’s happening in the home environment that’s pertinent,” says Monica William,s who was one of the lead commissioners on the Students First report on inclusive education.
Parents from every region in the province expressed the same concerns.
“They want to have information about how their children are doing and they want to know that on a regular basis and to be informed of the possibilities and choices that are available,” she says.
“That was at the crux of a lot of the conversations we had on information and communication.”
Transitions between preschool and primary and then from grade to grade are periods where the commissioners found that communication was breaking down.
In response, the departments of Education and Early Childhood Development, Community Services, Health and Wellness, and Justice as well as the Nova Scotia Health Authority and the IWK have undertaken an examination of their services and the bureaucratic barriers that exist between them.
“There are a lot of silos in our system,” says Williams referring to the ways that departments contain, but do not necessarily share, information with others.
Parents filling out paper work, often year after year, to ensure that their child can access services offered by each department can be tedious and frustrating. A problem that is made worse if there is a three-year waiting list.
“When students are on wait lists for a long time, the paperwork has to be repeated and that just adds to the situation,” says Williams.
It is for this reason that the commission also recommended the province hire transition support staff and parent navigators as part of the provincial autism strategy that was included in the report.
Of the 190 new positions to be filled by the end of the month the province says it will add 70 specialist teachers who will work with students with ASD, as well as 11 parent navigators. No specific transition support staff are included in the roll-out.
“I think differently, and that’s a good thing,” Hugh says one night before the first day of school. “Autism isn’t a sickness. It just means people’s brains work a bit different.”
The Public Health Agency of Canada released a report estimating that one in every 66 children have ASD, and the Halifax Regional Centre for Education expects 100 students with ASD will be entering their schools this year.
“When he does have support, he does exceptionally well and thrives,” says Allison about her son. “In the classroom he’s able to be with his peers. He can learn from them, and they can learn from him.”