In early December 2009, a 7-year-old Cape Breton boy diagnosed with autism, James Delorey, was found dead after being lost for two days in the woods in freezing cold temperatures. His heart-wrenching story was headline news and hundreds attended his funeral, some coming from all over Canada. Since 2001, groups of concerned parents of autistic children, including the Autism Society of Cape Breton, had been pressing the Nova Scotia government to seriously address the exploding demand for special education services. It took a tragic death to get the crying needs of autistic children on the public agenda and persistent parental pressure to spur some real action.
We are definitely facing a looming crisis in meeting the Special Education challenge. Autism spectrum disorder (ASD) is now the most common childhood development disorder. General prevalence rates have soared from 1 in 2,500 in the 1960s to 1 in 110 in 2009 ( Centres for Disease Control and Prevention, 2009). In Nova Scotia alone, it is now estimated that some 1,400 of the province’s 132,000 students have been officially diagnosed with autism. Since 1996, the NS Education Department has implemented an inclusion policy, meaning that — wherever possible — special needs children are “included in their community school with their same-aged peer group in regular classrooms.” Only recently has the Education Department sought outside help. Last school year, as a stop-gap measure, a limited number of autistic children were financially assisted to attend one of three designated private schools offering intensive support programs, Landmark East School, Bridgeway Academy, and Churchill Academy.
A Provincial Autism Management Advisory Team Report ( May, 2010) did not sugar coat the serious problem. (See https://www.gov.ns.ca/coms/noteworthy/AutismReport.html ) In a system already under stress, the Report demonstrated that new needs were emerging and the current ‘patchwork’ approach simply won’t work to head-off the looming crisis for families. With 1 in 110 children now diagnosed with ASD, the total numbers of autistic autistic children now outnumber those with Down Syndrome, Muscular Dystrophy, Cystic Fibrosis, Cerebral palsy, and Diabetes combined. It is also clear that boys are 5 times more likely to be diagnosed with the disorder and that it is the most inherited of all the major disorders.
Autism among children is not new, but it is clear that numbers matter when it comes to getting the attention of policy makers. It was first identified in the early 1940s by two different doctors, Leo Kanner and Hans Asperger, and they coined the term “autism” – from the Greek word self – to describe children who seemed to “live in solitary worlds.” Since Asperger included children who had average to high IQs in his study, the term “Asperger Syndrome” has been reserved for child prodigies and high functioning people with the autistic disorder. Some 70% of people with other forms of autism suffer from mild to severe mental retardation. http://www.cbc.ca/news/background/autism/
Parents of autistic children learn very quickly that they will have to fight for every bit of outside assistance and often find themselves spearheading the whole program. One of the finest programs is Giant Steps, a parent support program founded by a dozen families in Westmount, Quebec, back in 1981. (www.giantstepsmontreal.com ) While serving as a Public School Trustee in York Region in the mid-1990s, I helped a Toronto Giant Steps group get started in the Vaughan Secondary School attendance area. What impressed me about Giant Steps was that it was child-focused, but entirely parent-driven. Today, that little parent initiative has grown enormously. Since 2000, Giant Steps Toronto has acquired its own school site, Flowervale Public School, and operates a “Kids Helping Kids” program for between 500 and 740 kids per year in the Greater Toronto Area, generously supported by the Trillium Foundation. (www.giantstepstoronto.ca)
With the growing numbers of autistic children, Special Education Services in most public boards of education are now stretched to the breaking point. In Nova Scotia, the Department of Education is trying to catch-up after years of benign neglect. Since 2001, the whole issue has been ducked by successive governments, likely because of the costs involved in providing the needed in-school and after-school support. A Provincial Autism Centre was founded in October 20o2, funded by the Craig Foundation, endowed by Joan and Jack Craig, parents of an adult son with autism. In February 2007, a Halifax mother struggling with her own autistic son went into full panic mode when rumours circulated that her son’s South End school might possibly close. Scattered groups of parents in Bedford-Sackville and the Annapolis Valley, on the South Shore, and in far-off Cape Breton soldiered on fighting for their children. It’s a completely patchwork system, heavily dependent upon parent advocacy.
Provincial education ministries committed to “inclusion” are facing a new reality that was never envisioned. The principle of inclusion is a laudable one, provided the numbers are manageable in regular classrooms. Most teachers do their best, but few can cope with the numbers found today in many regular classes. In Nova Scotia, the situation is particularly grim. The recent Provincial Report demonstrated that very few teachers are trained or equipped to deal with autistic children and “teachers do not have time” to even “carry out the autism curriculum” let alone apply the “many faceted approaches.” The service gap is tremendous, given a survey which showed that 3 out of 5 families in Nova Scotia lack access to school activity or recreational programs, after-school programs, and summer camps.
The looming crisis in Special Education can no longer be ignored in both public and private education. What can be done to respond to the growing need for school-based programs and ongoing parent support activities? Will “clinical approaches” depending upon medical professionals work, given the numbers? And is a Special Education model based upon inclusion sustainable in the long-run?