The 2012 Michener Award finalists talk about their award winning stories and the people who helped make them happen – Michener Awards Ceremony, June 18, 2013.
The Toronto Star series on autism focussed on the failure of Ontario’s health and social policies to address the challenges faced by those afflicted with the illness. The Autism Project sparked an intense debate and put questions about policy and treatment squarely on the political agenda.
Your Excellencies, Chief Justice, Parliamentarians, Ladies and Gentlemen, thank you for this great honour.
Autism is a spectrum of neurological disorders that, at its most severe, can trap children in their own minds, leaving them unable to communicate, socialize or reach their potential without expensive intervention. It has no cure, it lasts a lifetime and it is the fastest-growing brain disorder in the world.
Last year, the American Centers for Disease Control reported that 1 in 88 children in the U.S. had been diagnosed with some form of autism, a 78-per-cent increase in 10 years. Canadian autism experts say numbers here are similar and show no sign of slowing.
While the implications for health, education and social service policy and delivery run deep and wide, there has been little meaningful Canadian journalism on the issue.
Editors Lynn McAuley and Alison Uncles assigned a team of two photographers and six reporters to address that gap.
We divided the autism life cycle into six stages – prenatal, toddler, school-age, young adult, adult and old age. Each reporter was assigned a stage, as well as a mandate to tell stories that have never been told about autism in Canada.
A four-month research odyssey took the team from a specialized computer lab in China to homeless shelters in Hamilton, and from group homes in Aurora, Ont. to living rooms in downtown Toronto.
We called it The Autism Project, and its sweeping and original treatment of the topic exposed a shocking lack of government strategy and policy across each stage of the life cycle of autism.
Often first noticed by parents in early childhood, diagnosis occurs, on average, by age 4. The quest for treatment is a Kafkaesque exercise of waiting for a diagnosis, waiting to find out if your child is eligible for treatment and then waiting for the treatment itself.
Average wait times from diagnosis to treatment are typically between two and four years, often missing critical developmental windows. As a result, many parents spend their life savings to pay for prohibitively expensive treatments.
The series exposed a severe shortage of services and funding, particularly for young adults. It broke stories of autistic youth who were sent to homeless shelters due to a lack of appropriate housing options, and adults who were incarcerated, sometimes for years, for minor offences.
It uncovered the often-undocumented experience of girls and women on the autism spectrum, who make up just one in four of those diagnosed with the disorder.
The Star was the first mainstream Canadian media outlet to report on the lives of mothers with autism and the first to sound the warning about the scarcity of services for the generation of older autistic adults.
The Star also travelled to China to witness Canada’s leadership role in spearheading the effort to decipher the genetic codes of 10,000 autistic children; the most ambitious global scientific investigation to date.
The reporting, carried out in the summer and fall of 2012, resulted in a panoramic picture of autism at that time.
The Autism Project’s impact was immediate, and profound. In November, Ontario Ombudsman Andre Marin launched an investigation into gaps in services faced by adults with autism and other developmental disabilities, crediting the Star for bringing the issue to public attention.
In December, the province appointed a blue-ribbon panel to review autism policies and programs.
And in January, the auditor general launched an investigation into funding of autism services for children in Ontario.
Perhaps most rewarding for our team has been the feedback from people living with autism and their advocates who say they often hold their breath waiting for media reports anticipating yet another narrow, sensational and inaccurate representation of the issues surrounding the disorder. They praised the series for its “commitment to truth-telling, great stories and wonderful, articulate writing.” They tell us it has “clearly made a difference.”
For Star journalists, that is ultimately what our work is all about.
Thank you.
Laurie Monsebraaten
Michener Awards Ceremony
Rideau Hall, Ottawa
June 18, 2013.