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Archive for the ‘Autistic Children’ Category

Principal Daniel Villeneuve of Saints-Anges Catholic Elementary School in North Bay, Ontario, is among the first wave of Canadian school leaders to take a stand against fidget spinners, the latest craze among children and teens world-wide. On May 23, 2017, he visited class after class to advise his students that the hand-held gadgets were being banned from school grounds. Marketed as a “stress reliever” for anxious or hyperactive kids, the spinners had become a “major distraction” interfering with teaching and learning affecting everyone in the classroom.

FidgetSpinnerCloseUpThe North Bay principal’s letter to parents, issued May 24, 2017, directly challenged the claim of the commercial product’s marketers that a fidget spinner “helps people focus and concentrate.”  He was crystal-clear about the real “issues with this toy”: 1) it makes noise; 2) it attracts attention; 3) most kids require two hands to make it spin; and 4) it distracts the user and others. For this reason, it was “banned from the school and the day care” and “must remain in the student’s school bag at school.”  What he didn’t say was perhaps obvious – it was driving teachers crazy and making teaching almost intolerable.

Most Canadian school authorities and far too many principals were simply asleep at the switch, compared to their counterparts in the United Kingdom, New York State, Southern California, and New Zealand.  By May 10, 2017, 32 per cent of America’s 200 top rated high schools had banned the spinners from their premises. With the exception of a few Western Canadian school boards, provincial educational leaders seemed to be taken-in by the latest student pacifier and the pseudoscience offered in support of such panaceas. How and why did it get so advanced, and take so long, before a few courageous school principals saw fit to weigh in to put a stop to the classroom disruption?

Fidget spinners, since their invention in the 1990s, have been used with some success to assist in teaching students severely challenged with autism. “We call them fidget tools because they really are tools,” Edmonton autism specialist Terri Duncan told CBC News. “Sometimes it helps to tune out other sensory information. Sometimes it helps them calm and focus. Sometimes it helps them with their breathing and relaxing. It’s a little bit different for every child.” They are one of a series of such tools, including fidget cubes, squishy balls, fuzzy rings, tangle puzzles, putty and even chews — colourful, tactile objects to meet the special needs of ASD children.  Fidget spinners, she adds, “can prevent kids from chewing on their fingers, from picking at their hands, picking at their clothes” and actually help them to concentrate more in class.

Serious problems arise when the fidget spinners are employed to simply relieve everyday stress and anxiety. One leading clinical psychologist, Dr. Jennifer Crosbie of Toronto’s Sick Children’s Hospital, sees value in the gadgets for treating autistic children, but is not a fan of their widespread use in classrooms.  In her words, “it’s too distracting” and “draws attention” to the user, disrupting the class. She and many other clinicians now recommend that schools limit their use to special education classes or interventions.

School authorities in Maritime Canada appear to have initially accepted the claims of the marketers and been swayed by their special education program consultants.  Self-regulation, championed by Dr. Shanker, has made inroads in elementary schools, many of which embrace “mindfulness” and employ “stress-reduction” strategies.  In the region’s largest school district, Halifax Regional School Board, the policy decision was left up to individual schools and frustrated teachers took to social media to complain about the constant distraction and ordeal of confiscating spinners to restore order. New Brunswick’s Anglophone school districts seeking to accommodate learning challenged students in inclusive classrooms accepted spinners as just another pacifying tool to complement their wiggle stools. In rural school communities such as Nova Scotia’s Shelburne and Pictou counties and towns such as Summerside, PEI, the craze popped up in schools totally unprepared with policies to deal with students fixated with the gadgets.

Prominent education critics and teacher researchers are now having a field day exposing the pseudoscience supporting the introduction of fidget spinners into today’s regular classrooms.  A Winnipeg psychologist, Kristen Wirth, finds little evidence testifying to their positive results and claims that it is a “placebo effect” where “we feel something is helping, but it may or may not be helping.”  Canada’s leading teen mental health expert, Dr. Stan Kutcher, sees “no substantive evidence on spinners” and warns parents and teachers to be wary of the out-sized claims made by marketers of the toys.

British teacher Tom Bennett, founder of researchED, is more adamant about the “latest menace” to effective teaching and learning in our schools.  The latest fad – fidget spinners – he sees as symptomatic of “education’s crypto-pathologies.”  Teachers today have to contend with students purportedly exhibiting “every trouble and symptom” of anxiety and stress.  Misdiagnoses, he claims, can lead to children feeling they have some insurmountable difficulty in reading, when what it requires is tutorial help and ongoing support.

“Many children do suffer from very real and very grave difficulties,” Bennett points out, and they need intensive support. When it comes to “fidget spinners,” he adds, “we need to develop a finer, collective nose for the bullshit, for the deliberately mysterious, for the (purely invented) halitosis of the classroom.”  In spite of the inflated claims of the marketers, “magic bullets and magic beans” won’t provide the solutions.

Why are today’s schools so susceptible to the inflated claims of marketers promoting the latest educational gadget?  Do popular inventions like the fidget spinner answer some inner need in today’s fast-paced, high anxiety, unsettled popular culture?  To what extent have Dr. Stuart Shanker and his student behaviour theorists made us more receptive to tools which are said to relieve stress and promote “self-regulation” in children?  Why do so many education leaders and school principals go along with the latest trend without looking deeper at its research-basis and broader impact? 

 

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The rise of autism poses one of the biggest current challenges facing North American families and school systems everywhere. The latest education jurisdiction to step into the breach was the Canadian province of Ontario. In response to the mounting pressures for expanding services, the Ontario government announced a new $333 million, five-year autism program initiative packaged as good news.

AutismAndraFelsmanSonRiellySudburyInstead of being welcomed by parents of autistic kids, the move sparked a firestorm of provincial and local community protests. Hundreds of parents descended upon the Ontario Legislature to protest on April 12 and, three days later, local groups carrying signs reading “Autism Does Not End at Age Five” rallied in more than half a dozen smaller centres, including Ottawa, Kitchener, Aurora, Sudbury, Mississauga,and Waterdown, near Hamilton.

Young children with autism spectrum disorder in Ontario were promised shorter wait times for intensive therapy covered by the province, but those ages 5 and up will no longer be eligible as part of a revamped Ontario system. The New Ontario program aimed to cut wait times in half for Intensive Behavioural Intervention (IBI) within two years, and then down to six months by 2021, according to the Ministry of Children and Youth Services.

The decision meant that 2,200 children ages 2 to 4 would be removed from wait lists over the next two years, while some 1,378 in treatment after age five, over half of the 2,000 currently served, would be transitioned out with an $8,000 grant intended to subsidize the less intensive Applied Behaviour Analysis (ABA) therapy.  Denying access to children over age five left many near desperate parents completely “heartbroken” and some totally outraged over being denied the needed services.

Ontario’s Minister of Children and Youth Services, Tracy MacCharles, broke into tears when faced with the barrage of opposition, and Irwin Elman, the provincial Child and Youth Advocate, sided with the aggrieved parents, urging the government to postpone its plans. “The debate is not about waitlists,” He added. “It’s about children. It’s about people, and it is about their possibility and futures.”

Addressing the growing incidence of children with autism is now such a critical public policy issue that it recently attracted the attention of The Economist, one of the world’s most widely read business magazines. Since 2000, the share of eight-year-olds diagnosed with some form of autism spectrum disorder, including Asperger Syndrome, has doubled to one in every 68 children or 15 in every 1,000 kids.
AutismIncidence2000to2012Autism affects different people in different ways, ranging from severe communications impairment and compulsive repetitive movements to milder forms of social anxieties with a few intense, almost obsessive interests.  School can be extremely difficult for autistic children, and they are three times more likely to be bullied or ostracized by peers, and many withdraw before graduation.
In Canada, the United States and Britain, they tend to be educated in mainstream classrooms with Special Education supports, which is considered less expensive than providing intensive programs. Regular classroom teachers in all three countries regularly report that they lack the training and resources to properly serve children with autism.

The Canadian province of Alberta stands out as an exception.  Since the mid-1990s, Alberta Education has embraced more school choice, especially in special education services.  Alberta’s direct funding system provides grant support for kids with developmental disabilities, based on each child’s needs, to pay for whatever services suit them best. Options include special needs schools, a range of behavioural, speech and occupational therapies, respite care, camps, and personal support workers to accompany children to recreational activities.

Children are assessed through the Family Support for Children with Disabilities program, which determines the amount. Wait times are minimal. Parents have choices, unlike in Ontario, where IBI is the only sustained treatment covered by the province. While Nova Scotia has a Tuition Support Program, it is limited to children with diagnosed SLD attending three designated schools enrolling fewer than 230 students. Financial support to attend specialized programs is extremely rare elsewhere in Canada.

One example of such a school program is Janus Academy, a Calgary, Alberta, school for children with autism. It’s a specialized private school where parents pay $12,000 in tuition each year for a program that costs $40,000 per student to operate. In other words, providing access to a specialized IBI program at a quarter of what parents would pay in Ontario.

Teaching autistic children using IBI can be expensive, but it can produce noticeable gains., especially if started in the early years. The Alberta government underwrites most of the difference, and the school also fundraises to support the tuition subsidies. “We don’t have to fight the schools (for what the children need), they’re partners with us. And I know they are learning,” reports Janus Academy parent Tim Ingram, formerly of London, Ontario.  The intensive and wrap-around support, he adds, helps the whole family function, but it takes some extra effort to secure a place in such a school.

School can be tough for autistic children and teens, but many have a worse time once they leave the system. A study by the A.J. Drexel Autism Institute in Philadelphia found that only 19% of American autistic people in their early 20’s lived independently, away from their parents. Wherever they live many are isolated: one in four said that they had not seen friends or received invitations to social events in the past year. Some autistic people prefer their own company, but many are unhappy.

Preparing and training autistic young people for the workforce is emerging as a priority in the new economy.  While academic studies on global employment rates for adults with autism are rare, the UN estimates that 80% do not work. A survey by Britain’s National Autistic Society, a charity, suggests that only 12% of higher-functioning autistic adults work full time. For those with more challenging forms of autism, only 2% have jobs.

Job training, life-skills coaching and psychotherapy could really help in tackling the problem. An American study found that 87% of autistic youngsters who were given assistance to find a job, got one. Only 6% who did not receive support were successful. But in most countries, services disappear the moment autistic people finish full-time education.

There is hope that the life prospects for those with autism will improve in the future. More progressive business leaders and enterprises, as reported in The Economist, are stepping-up and providing more flexible employment arrangements to take fuller advantage of the truly unique skills and aptitudes of autistic people. Providing early treatment and effective intensive behavioural intervention is where it has to start.

Why is autism considered one of the biggest school challenges of our time? Why is Intensive Behaviour Intervention (IBI) so much in demand– and so rationed in our public school systems?  What’s standing in the way of provinces and states adopting the Alberta model of school choice and tuition support for intensive programs? What more can be done to properly “transition” autistic students into the workplace?  

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A recent news segment on CTV National News, aired October 7, 2015, focused on the outrage expressed by parents of a British Columbia boy with Down Syndrome upon discovering that their son, Deacon, age 7, had been repeatedly been confined to a so-called “quiet room” – a small, windowless space designed for disruptive students. “I think it’s awful,” said father Kirk Graham. “It breaks my heart for my son.” He and his wife Jackie were so upset that they pulled their son out of school in protest. “This needs to stop,” Mr. Graham added. “Nobody should be put in a lockdown room.”

TimeOutBoyBC2015QuietRoomBCSchoolThe Salmon Arm, BC, case is not an isolated instance. A British Columbia report, Stop Hurting Kids, commissioned by Inclusion BC and the Family Support Institute in November 2013, identified 200 examples of children being left alone in everything from windowless offices to padded rooms to a gym equipment closet. Roughly half of the examples involved “seclusion” for periods as long as 3 hours; about one-in-three of the examples involved imposing physical restraints. An estimated 72 per cent of parents reported that their child suffered “emotional trauma.” Most concerning of all, somewhere between half and three-quarters of the parents only learned about the “isolation” through someone outside of the school.

Many Canadian schools now have “time-out” rooms to accommodate students engaging in repeated inappropriate or disruptive classroom or playground behaviour. Those segregated school spaces go by a variety of names ranging from “time-out” to “quiet corner” to “isolation” depending upon the province and particular school district.  Most, if not all, education authorities now have “guidelines” for the use of “designated time-out” rooms.  In the Atlantic provinces, for example, a set of formal guidelines, developed first in 2002 in New Brunswick, have essentially sanctioned such “behaviour-modification” actions.

Intervening in the classroom to curb misbehaviour or ‘acting-out’ by calling a “time-out” is commonly accepted professional teaching practice.  In most instances, it is the appropriate strategy, and Special Education research (ABA) tends to show that it can be effective in reducing problem behaviours, including those exhibited by students with autism spectrum disorder (ASD) and behavioural disorders. Faced with students demonstrating aggressive or potentially dangerous behaviours, teachers need to have a range of means to assist in settling students down in school.

Having recognized that practical classroom reality, the “time-out” strategy can lead to more intrusive and potentially damaging measures involving “restraint” and “seclusion.” The Canadian Council for Exceptional Children recognizes restraint and seclusion as “an emergency response, not a treatment.” The Ontario Association for Behaviour Analysis (ONTABA) recommends carefully planned, monitored and limited time-out sanctions and restraint and seclusion as “a last resort” in an “emergency situation.”

American professional organizations such as the APBA, faced with far more lawsuits, are far more explicit in setting limits. “The misuse and abuse of restraint and seclusion procedures with vulnerable people is intolerable,” according to the APBA (2009), ” an represents a clear violation of ethical principles and accepted professional practice.”

Over the past decade, “isolation rooms” have come to light as a direct result of some well-publicized and disturbing cases. In March of 2009, the parent of 8-year-old Dylan Gale went public over the confinement of her son in a the “storage closet” of a Windsor, NS, public school. A Nova Scotia Education Department survey found that 42 such unregulated rooms existed in provincial schools and that revelation led to the implementation of an August 2009 set of guidelines.

Even with policies in place, alleged abuses continue to happen across Canada. Last school year, a 9-year-old autistic boy attending Ottawa’s St. Jerome Catholic School was handcuffed by police officers on school premises and Toronto-area parent Karen Thorndyke launched a $16 million law suit against the Peel District School Board for confining her autistic son to an “isolation room.”

Schools are not intended to be prisons or young offender’s centres, so time-outs, restraints and seclusion tend to arouse very strong feelings. In Britain, vocal critics of “isolation rooms” campaign for their abolition because they tend to be applied against Special Education students who find themselves “frightened and alone” in such enclosed spaces. Since the 2006 report, “The Costs of Inclusion,” the issue has been hotly-debated. That report’s findings demonstrated that the real purpose of seclusion was to “remove the disruption” so that “teachers can get on with teaching.”

Seclusions have only short-term impact and only solve an immediate problem for a teacher attempting to cope with a class of 27 to 30 other students. A 2010 U.K. Bernardo’s report, “Not present and not correct, concluded that isolating a student “usually neither addressed the issues leading to discipline problems, nor provided any guidance that would help the young person learn to control themselves.”

Isolation of students does not really address the root causes and merely hides it away from sight. It also raises fundamental policy questions: What is the impact of restraint and seclusion on our most challenged and vulnerable children and youth? How can we support teachers confronting significant behavioural problems without entrenching such potentially damaging practices? Is it right to remove one child from the room so that others can learn? Is this chronic issue one of the unintended consequences of imposing “fully inclusive classrooms” on everyone?

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Inclusive education in Canada has found its most ardent champions in New Brunswick, in the Canadian Association for Community Living, and in a number of faculties of education. From his perch in New Brunswick, Dr. Gordon Porter, has played a prominent role, most recently as the Director of Inclusive Education Canada. That is why the recent report on New Brunswick’s inclusive education system, co-authored by Porter and Angela AuCoin,  attracted so much  attention from both  the inclusionists and their critics.

New Brunswick Minister of Education Jody Carr hailed the release of the report in his June 5, 2012 announcement that New Brunswick was reversing its cost cutting course and spending $62 million more over the next three years on implementing inclusive education.  http://www2.gnb.ca/content/gnb/en/news/news_release.2012.06.0494.html  It amounted to a ringing endorsement of the long-awaited report which recommended that the province forge ahead with its 25-year struggle to “transform the thinking of school leaders” and to make the regular classroom the focus of student support services. http://www.gnb.ca/0000/publications/comm/Inclusion.pdf

The Strengthening Inclusion, Strengthening Schools report, produced by the well-known inclusion theorists, may not be the final word on the subject. Striving for the “full inclusion” of all students in the publicly-funded school system is a most worthy goal, but the report’s findings reveal that it is still more of an illusion than a reality in today’s New Brunswick schools, especially for those students with severe learning disabilities or complex needs.

One in ten Canadians reportedly suffers from some kind of learning disability and between 2 % and 4% of New Brunswick’s public school students, numbering from 2,100 to 4,200, are struggling at school with serious learning challenges. The Porter-Aucoin report also acknowledges that a mixed bag of alternative school programs continue to exist, across the districts, serving some 1,000 or so students with significant learning challenges.

Serving growing numbers of children with Autism Spectrum Disorder will require flexibility and out-of- the box learning.  Some 1,238 of New Brunswick’s 74,579 Anglophone public school students have now been diagnosed with autism and many already require significant learning supports. It’s fast becoming the biggest challenge facing the province’s regular Kindergarten to Grade 12 schools.

Since the adoption of Wayne MacKay’s 2006 report on Inclusive Education, the province has pursued “full inclusion” in regular classrooms with dogged determination. The Education Department, working closely with Gordon Porter’s Inclusive Education Initiative and the New Brunswick Association for Community Living (NBACL) has become the leading proponent of the “one-size-fits all” regular classroom model.  More recently, the Department has become closely aligned with the NBACL, to the point where their websites virtually mirror one another.

Vocal critics of the current model, like Fredericton autism advocate Harold L. Doherty, charge that the province’s current regime is “philosophy-based” and turns a blind eye to students with “complex needs” who are being marginalized and eventually left by the wayside. http://autisminnb.blogspot.ca/2012/06/building-bigger-tent-is-badly-needed.html  Classroom teachers, lacking the expertise and resource support, according to the NBTA’s Heather Smith, can be overwhelmed by the growing numbers of “students in difficult situations.”

New Brunswick’s full adoption of Inclusive Education since 2006 has certainly tested the limits of the “all-inclusive classroom”  as the answer for all K-8 students and the vast majority of high schoolers.  Alberta, Ontario and Nova Scotia have all responded to shifts in the composition of the student population by offering more self-contained classes and viable alternative school programs.

The neighbouring province of Nova Scotia provides a stark contrast. There a small number of private, independent Special Education (Grade 3-12) schools have emerged since the 1970s to fill the gap by providing a vitally important “lifeline” in the continuum of student support services.  Demand for such schooling grew after 2000 to the point where the Nova Scotia Education began looking at implementing a provincial tuition support program serving students with more acute learning difficulties.

The Nova Scotia Tuition Support Program (TSP), initiated in September 2004, provides an option for students with special needs who cannot be served at their local public school. It was explicitly intended for short-term purposes and works on the assumption that students can eventually be successfully “transitioned” back into the regular system. The TSP provides funding which covers most of the tuition costs to attend designated special education private schools (DSEPS) and any public alternative education centres that might eventually be established in Nova Scotia.

My AIMS research study, Building a Bigger Tent, provides a detailed cost-benefit analysis of New Brunswick’s implementation of inclusion, identifies a significant hole in the system, and examines the pent-up demand for a full continuum of service, from mainstreaming to self-contained classes to special needs schools.  It rejects the findings of the Porter-Aucoin report and calls for a truly independent, arms-length review, seeking to assess the unmet demand for better alternative “lifeline” programs, meeting the needs simply unable to cope in a regular classroom.http://www.aims.ca/site/media/aims/Building%20a%20Bigger%20Tent.pdf

New Brunswick would benefit from taking a closer look at Nova Scotia’s service delivery model, including Special Education schools and the ground-breaking Tuition Support Program (TSP) rendering them more accessible to families with severely learning challenged children.

The Porter-Aucoin report may have produced more funding for student supports, but without “lifeline school programs” do not expect significantly improved outcomes for severely learning disabled kids. It’s high time that New Brunswick stepped back with a wider lens, started listening more to those currently locked in a system designed by theorists, in the interests of promoting a better educational environment for teachers and students alike.

Who is being ‘left out” or falling by the wayside in the New Brunswick model based upon “full inclusion” for all in a regular classroom, whatever the severity of their needs? What happens to students who cannot cope or thrive in the all-inclusive classroom?  Why do existing special programs and alternative education centres fly so much below the radar in the province?  What can New Brunswick learn from Nova Scotia, Ontario, and Alberta when it comes to support for kids with severe learning disabilities and complex needs?

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Building inclusive schools has been a high priority for Canada’s provincial school systems for the past two decades.  It is now generally agreed that public schools should embrace an overall philosophy of inclusion which supports the right of all children to the best possible education.  “Full inclusion” — the idea that all children, including those with severe disabilities, can and should learn in a regular classroom has also taken root in many school systems, and most notably in the province of New Brunswick.  Since the 2006 adoption of  Halifax law professor Wayne MacKay’s report on Inclusive Education, New Brunswick has aggressively pursued the “everyone must be educated in the mainstream classroom” model of inclusive education.  http://www.gnb.ca/0000/publications/mackay/mackay-e.asp

A full Provincial Review of Inclusive Education is now underway in New Brunswick, co-headed by Dr. Gordon L. Porter, a leading Canadian advocate and consultant on inclusive education.  Five years after its official adoption, the review is definitely being undertaken by a commission stocked with  “friendlies.”  While awaiting its release, a few critical questions need to be asked:  Will the Provincial Review actually examine whether “mainstreaming” is “the most enabling environment” for all special needs children?   Will the Review yield longitudinal, validated research demonstrating the superiority of “full inclusion” for students with with all types of learning disabilities?  And how are students with “complex and severe needs” actually faring under the current system?

Dr. Porter’s recent commentary, featured on the Canadian Education Association Blog, suggest that none of those questions will be squarely addressed in the forthcoming review.  http://www.cea-ace.ca/blog/gordon-porter/2011/12/3/are-we-star-gazing-can-canadian-schools-really-be-equitable-and-inclusi   For an education consultant with such a mandate, he sounds more than a little biased in favour of “full inclusion” for everyone.  His main preoccupation, in his own words, is advancing his 30-year struggle for “”equity and quality” in “an inclusive education system.”  He expresses deep disappointment over the ‘back-sliding’ over “the last ten years.”  Some of our largest Canadian school districts, Porter notes, “are not only maintaining the number of students in self-contained special education, they are actually increasing it.”

The New Brunswick review is firmly in the hands of the so-called extreme inclusionists.  Professor MacKay and Gordon Porter are not only the leading proponents, but they have friends in high places.  As head of the NB Human Rights Commission, Porter successfully enshrined inclusion in the provincial code.  He was a key member of the Transition Team when David Alward and the Conservatives came to power, and Krista Carr, Executive Director of the NB Association for Community Living, is the the spouse of Jody Carr, currently the Minister of Education.  The NBACL is, without a doubt, the most zealous organization promoting full inclusion for all kids.

Full inclusionists tend to be deeply committed to defending “human rights” but rather inclined to dismiss  research and evidence contradicting their perceptions.  The Learning Disabilities Association of Canada (LDAC) and one of its founders Yude M. Henteleff continue to claim that the “fully inclusive classroom” is “only one of the right ways to meet the best interest of the special needs child.”

A November 2005 LDAC policy on Educational Inclusion confirmed their support for “the availability of a continuum of education services” from regular mainstreamed classes to “a small class setting” and  ” an even more intensive program such as those offered by a special school.”  http://www.ldanl.org/ldanl/pdf/LDACPolicyStatement-Inclusion.pdf    More recently, an independent review of best practices research  in Learning Disabilities Education, conducted by Dr. Anne Price of the Calgary Learning Centre in 2009 for Nova Scotia Education , confirmed the wisdom of a more flexible approach offering a variety of service options suited to the needs of the child. http://www.studentservices.ednet.ns.ca/sites/default/files/Tuition_Support_Program_Review_2009.pdf

Full inclusion continues to be controversial as a “one-size-fits-all” special education policy, even in New Brunswick.  For the past decade, Fredericton lawyer Harold L. Doherty, has fought a determined fight for his son, Conor, and hundreds of other parents of kids and teens with Autism Spectrum Disorder.  His Blog, Facing Autism in New Brunswick, < http://autisminnb.blogspot.ca/&gt; gives voice to the voiceless and serves as an incredible source of information on the limits of New Brunswick policy and makes a compelling case for a change in policy direction. After years of advocacy, Harold secured a “self-contained class” in Leo Hayes High School for his own son, but he’s continuing the struggle on behalf of  autistic children,  youth and young adults.  http://www.theaq.net/2011/what-resources-are-available-when-youre-growing-up-with-autism/-5325

The New Brunswick government, like a few other provincial authorities, is now wrestling with the challenges of educating students with “complex special needs” and “youth-at-risk.”  A visionary 2008 report, Connecting the Dots, by former Youth Advocate Bernard Richard, pointed that province in a better direction. His recommendation for a Centre for Excellence garnered most of the attention, but his report also made a strong plea for “children with complex needs who are no longer in the mainstream” and called for the creation of a new education authority to support children  “marginalized” in the New Brunswick system.   http://www.gnb.ca/0073/PDF/ConnectingtheDots-e.pdf

Why do Canadian education ministries have so much trouble “connecting the dots” in the field of special education services?  In the case of New Brunswick, has “full inclusion” become such a powerful ideology that students with “complex needs” who do not fit-in get left by the wayside?  Why are the advocates so reluctant to survey teachers and parents with a simple, clear set of questions — is it working for everyone?  If not, what would work better for the kids who need learning support the most?

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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?

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