Camps on TRACKS: Creating meaningful social interactions for children with ASD and their peers

AutismMATTERSWINTER 2012 Volume 9 • Number 1

A PUBLICATION OF AUTISM ONTARIO

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AutismONTARIO’S

Potential ProgrammeTakes off

What’s Inside

Autism Ontario is a registered charitable non-profit organization (#11924 8789 RR0001).

OUR VISION: Acceptance and opportunities for all individu-als with Autism Spectrum Disorders (ASD). Our Mission: To ensure that each individual with ASD is provided the means to achieve quality of life as a respected member of society. Autism Matters is published four times per year. Autism Matters wel-comes contributions from its readers. Send your articles, reviews, letters, comments, announcements, etc., to Margaret Spoelstra, Autism Matters Editor. For advertising rates and inquiries contact GEPM Group Inc., [email protected]. Inclusions of informa-tion not directly related to Autism Ontario are for information only and individuals, events, therapies, treatments, etc., are not necessarily endorsed by Autism Ontario.

Autismontario

1179 King Street West, Suite 004Toronto, ON M6K 3C5Phone: 416-246-9592

Fax: [email protected]

Board of Directors

Doris Barkley, Robert Brown, Jane Burke-Robertson, Susan Fitzhenry, Dr. Cynthia Goldfarb, Jane Houlden, Gail Laliberte, Mark Lyon (Treasurer), Amanda McNulty (Chair of President’s Council), Leah Miltchin (President), Dr. Jo-Ann Reitzel, Monica Richardson (Past-President), Michael Spicer (Secretary), Cathy White

table OF CONTENTS

OUR WINTER 2012 ISSUE

Local Chapters

To find contact information for your local Autism Ontario chapter, visit www.autismontario.com.

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Strategic DirectionsLook for these icons to identify articles in this issue with aspects of Autism Ontario’s strategic priorities:1 Effective marketing and fundraising2 Building a unified organization3 Opening doors for adults4 Educating educators and professionals5 Using information technology to

collaborate, learn and share6 Expanding our reach

3 News and Noteworthy

6 The Social Inclusion Act: A User’s Guide, by Laurie Pearce

10 Opening Our Doors to New Possibilities, by Lindy Zaretsky

14 Camps on TRACKS, by Laurie Quinlan et. al.

17 Info Autisme

27 From the Outside In, by Pat O’Connor

29 A Week of Magic, by Shona Casola

31 Speaking Their Language, by Briano Di Rezze

34 New Staff Intro: Katherina Symes

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Ontario Loses a Hero: Lindsay Moir (1946-2012), by Margaret Spoelstra

On the Road with Sudbury and District, by Jenne Wilson

3739

In Your Corner

Christmas at Drysdale’s Tree Farm, by Tanya Stephenson

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features

Cover photo credit: Klaudia Topic

book reviews poems3 Echoing the Thoughts of a Child,

by Klaudia Topic

13 Big Brother, Name Withheld

33 Challenging the Myths of Autism: Unlock New Possibilities and Hope, by Jonathan Adlerson, reviewed by Monica Richardson

34 Maps and Mapping for Canadian Kids, by Laura Peetoom and Paul Heersink, reviewed by Daniel Myers

message EXECUTIVE DIRECTOR

WINTER 2012 AutismMATTERS 3

Family supports to help your child reach their potential!

POTENTIAL PROGRAMME

3 Echoing the Thoughts of a Child, by Klaudia Topic

13 Big Brother, Name Withheld

News and Noteworthy

I am uniquely and perfectly made.Engage, engage, and engage with me.Lose all expectations; focus on what I can do.Although it may not be obvious to you,I am taking everything in.Never give up on me – for just like you,I have amazing potential.The possibilities are endless.All will be revealed in my time, not yours.With quiet resolve; advocate, advocate and advocate for me.Let me lead for you will get your turn later.Give me opportunities to learn new skills.Thoughtfully expose me to new experiences.If you challenge me, you will enable me – I just might surprise you!Read, read and read with me, particularly when I am most receptive.Routines work well with me, as I like their predictability.Allow me to build trust with you; join with me in my world one tiny step at a time.One day I will reciprocate and jump into yours.What works for some of us, may not work for all of us.Two steps forward, one step back.Another step forward and two steps back.You are not alone.For many have walked before youAnd many will walk alongside you.Countless others will walk behind you.Plan, plan and plan ahead.Accept the challenges and celebrate the successes,Regardless of how large or small.Mind, body and soul – nurture yourself and maintain a strong network of support.Above all, love me unconditionally and embrace the ‘disorder’.It does not define me.

Echoing the Thoughts of a Child©

by Klaudia Topic

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This poem brilliantly captures what so many families tell us about their children and the importance of sustained advocacy and support for these citizens with ASD who will one day become adults. Autism Ontario is pleased to support that journey with its expanded Potential Programme. Please see the enclosed flyer with further information in your region.

Margaret Spoelstra

Soutien aux familles pour aider les enfants à réaliser leur potentiel!

PROGRAMME POTENTIEL

voir le potentiel

message EXECUTIVE DIRECTOR

4 AutismMATTERS WINTER 2012

A Shared HonourAUTISM AWARENESS IS RAISED THROUGH APPOINTMENTS TO THE ORDER OF CANADA

THE ORDER OF CANADA, through the Governor General’s office, has chosen to recognize public awareness, research and advocacy of autism and developmental disabilities, through a few of its recent appointments. Although these appointments are given to specific individuals, the recognition of the work speaks to the increase in public recognition of the challenges faced by citizens on the autism spectrum and the voices of effective parent advocates across Ontario. This is no easy task, and many families face significant struggles which often keep them from bringing their own stories directly to federal and provincial leaders. Many professionals have had the unique privilege of partnering with parents and individuals on the spectrum to bring those messages forward through many years of professional service.

In 2011, one of the people who received the appointment to the Order of Canada is Brock University Professor, Dorothy Griffiths, C.M. Many of our readers will recognize her contributions which have focused on ASD, intellectual disabilities and mental health in her research and practice. When the opportunity to formally receive the appointment at Rideau Hall in Ottawa occurred for her this past November, I suspect she would have carried with her the work and voices of the people whose lives have impacted her work – those individuals and families she’s been honoured to partner with along the way. I hope to have that same opportunity sometime in 2012, and I am both humbled and proud to accept that appointment, knowing that it will be one more way to raise awareness of what people with ASD and their families face every day in Canada. The work continues.

Margaret Spoelstra, C.M.

feature RESEARCH AND PRACTICE


noteworthy NEWS + VIEWS


feature LIVING WITH AUTISM

BackgroundIN THE SPIRIT OF THAT TEACHER, this article is intended to call attention to, but not duplicate, the various published documents related to Ontario’s Social Inclusion Act, the interpretation and implementation of which will affect the lives of everyone with ASD (regardless of age) for many years to come. The Act and its supporting documents are not difficult to read, but they are not written for ease of understanding, and require jumping from section to section: this article does that jumping for you.

Since the impact of this law is just beginning to be felt, it is perhaps even more important than usual to become knowledgeable about this legislation. Regardless of your child’s age, you may be dealing with people, even in service agencies, who have incomplete or erroneous information.

Note: For the sake of simplicity, this article is directed to the person with ASD (that is, it talks about the law’s impact on “you”). This does not mean that a repre-sentative of the person with ASD cannot be involved in the process – the supporting documentation makes it clear that another person can act on behalf of the person with ASD at any stage of the process.

About the source documentsAll documents mentioned here are linked to Autism Ontario’s “Adults with ASD” website page (www.autismontario.com). These include: • TheActitself–the“ServicesandSupportstoPromotetheSocialInclusionof

Persons with Developmental Disabilities Act, 2008,” generally referred to as the

I still remember the Grade 9 teacher who spent an entire period

describing some events from Canadian history to our class, only

to announce a few moments before the bell rang that he had, in fact,

been lying to us about those events. His point? Always assume bias in any “authority,” and validate what they tell you against primary sources. A

useful, life-long lesson.

by Laurie Pearce

The Social Inclusion Act: A User’s Guide

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“Social Inclusion Act.”• Theregulationsthatoutlinethede-

tails about how the Act will be im-plemented. The Act says there will be four of these, each dealing with a different topic: eligibility criteria, quality assurance measures, report-ing, and financial record-keeping. Two of these have been published at time of writing: Regulation 276/10 describes eligibility criteria, while Regulation 299/10 describes quality assurance measures.

• Thepolicy directives that give spe-cific instructions for participants in the provision of services and sup-ports associated with the Act. At the time of writing, only the directive for application entities (see below for a definition) is published. Other supporting documents are

available but not described here – see our web site for links to a plain lan-guage booklet and the numerous related “Spotlight on Transformation” bulle-tins published by the Ministry, and of-ten deal with the implementation of this legislation.

About references in this articleReferences are given in square brackets and fall into three categories:• References to the Act itself are

shown as one or two numbers, refer-ring to the appropriate section and, where necessary, subsection of the Act. For example, “[4, 13]” means section 4, subsection 13 of the Act. In the printed version of the Act, section numbers are in bold and un-derlined, and subsection numbers are in brackets and underlined but not bold. (The Act is subdivided into parts, but since parts are numbered sequentially rather than including section numbers, part references have been excluded.)

• Referencestotheregulationsarein-dicated by “[Reg. ###, #]” where the first number is the regulation num-ber and the second is the section

number (where necessary).• Referencestothepolicydirectiveare

indicated by “[PD p. #]” where # is the page number of the policy direc-tive (only one has been published at this time).

Who are the key players involved in the Act?The key players are: [1]• Application entities – the regional

entry points for services and sup-ports, which were selected in July of 2011; some of these may also operate as service agencies (see below), but those operations should be separate.

• Service agencies – the groups thatprovide services and supports funded by the Ministry, which in Regulation 299/10 are further subdivided into those that provide behaviour inter-vention strategies and those that provide residential services and supports.Both application entities and service

agencies providing housing are subject to inspections, a requirement that is given extensive coverage in both the Act and Regulation 299/10.

What services are covered under the Act?The act covers “services and supports” for:• housing(ofvarioustypes,fromsup-

ported independent living to group homes)

• activitiesofdailyliving• communityparticipation• caregiverrespite• person-directed planning as well

as “professional and specialized services. Each of these is further defined in

the Act [4]. In addition, some of these items have their definitions expanded in regulations – for example, Regulation 267/10 added support for bedtime or overnight care, and expanded the list of professionals whose services are included [Reg. 276/10, 4].

Who qualifies for services?You need to have “significant” limita-tions in cognitive functioning (“intel-lectual capacity, including the capacity to reason, organize, plan, make judge-ments and identify consequences”) and in adaptive functioning (ability to “learn and apply conceptual, social and practical skills”). These limitations need to have started before age 18, be expected to last your whole life, and affect major areas of your life activity. [3]

How limitations in cognitive func-tioning will be judged is defined in Regulation 276/10. You must have one of the following:• a score of “two standard deviations

below the norm” on an IQ test (for many tests, this means a score of be-low 70, but this number is not explic-itly stated)

- or - • a score of “two standard deviations

below the norm” on two or more “subscales” of an IQ test (subscales are the specific items being mea-sured, such as problem solving, working memory, general knowl-edge, etc., but these vary based on IQ test)

- or - • a clinical determination (by a psy-

chologist or psychological associ-ate) that you have such limitations and a history of requiring support for self-care, communication, and/or socialization.The regulation also

states how limitations in adaptive functioning will be judged. You must have a score of “two standard deviations below the norm” on a test of adaptive be-haviour (for example, the Vineland), in one of the following: cog-nitive skills, social skills, and/or practical skills.




How do you apply for services and supports?

Step One: You prove your disabilityYou need to provide your application entity with proof of developmental dis-ability (assessment by a psychologist or psychological equivalent) [PD p. 9], al-though the application entities can ask for further assessment [14.3]. You also need to provide proof of your age and proof of Ontario residency [PD p. 9].

Step Two: The application entity deter-mines your eligibilityThe application entity determines if you are eligible for services (as described in “Who Qualifies for Services”) and must follow a very specific procedure if your eligibility cannot be confirmed based on the documents provided in step 1 [PD p. 12 – 13]. They must tell you their deci-sion in writing [15] and the decision can

be reviewed [16] in a multi-phase process [PD p. 14 -17].

Step Three: They assess your needsThe application entity assesses your needs and those needs are prioritized. You can state your preferences (such as for type of service) at this stage [17]. The assessment of needs must be done by a qualified person [PD p. 20 – 24]. Application entities use two tools at this stage (together these are called the “application package,” a rather confus-ing name). The first tool used is the Application for Developmental Services and Supports (ADSS), which attempts to determine your desires and vision for your future and also gathers informa-tion about your current supports and services. The second is a standardized measurement tool called the Supports Intensity Scale (SIS), which attempts to determine your specific needs. The SIS

is administered through two interviews which might involve just you, just a sup-port person, or both you and a support person [PD p. 22]. This whole assess-ment process, and its timing, must be explained to you [PD p. 23].

Step Four: The magic happensWhat follows the needs assessment is not clearly stated in the source materi-als available to date. It appears that at that stage you are transferred to a ser-vice navigator who will ensure that you are informed about services and put on centralized waiting lists (or, as they are called, “needs lists”), the same way the “lead agency” system used to operate in some jurisdictions.

How is the money handled?The act introduces two types of funding: • funding agreements between the

Ministry and service agencies

It has been two decades since there has been a provincial survey on adults with Autism Spectrum Disorders in Ontario. Since the 1990s, there have been major changes to the population of adults that are identified with an Autism Spectrum Disorder.

Many adults seen in clinical practice report that their ASD and related symptoms provide challenges that are not addressed.

Adults Count! is a province-wide survey that will provide important information on the profiles and needs of youth and adults on the Autism Spectrum.



• funding agreements between theMinistry and you (2, 9), an option that is not yet in force: see “What`s in the Law But Not In Force Yet?”

What requirements are in place for service agencies and application entities?The policy directive states that applica-tion entities need to communicate clearly with everyone about the services avail-able, the process for applying for services and supports, how feedback on the appli-cation entity’s service can be submitted, etc. It goes into considerable detail about these communication requirements (PD p. 4 – 8). It also explains how feedback about application entity service is to be gathered and handled (PD p. 27 – 28) and what information these entities are to provide to the ministry (PD p. 29 – 32).

Regulation 299/10 sets out the qual-ity assurance measures that both service agencies and application entities must adhere to. These describe measures for preventing abuse (and reporting it if it occurs), ensuring safety, keeping infor-mation confidential, etc. Much of the regulation deals with the requirements for mission statements, policies and pro-cedures, training/orientation, and other aspects of service agency administration.

The regulation describes the individ-ual support plans that need to be created by the service agency (not application entity) providing services and support to you. These are developed only once you are receiving service and are supposed to identify “strategies” to be used to help you achieve your goals, and what services and supports you are to be provided. It describes how these plans are to be devel-oped and what is to be taken into account when developing and maintaining them (annually) [Reg. 299/10, 5]. The regula-tion contains specific requirements for anything to do with helping you manage your finances or maintain/improve your health [Reg 200/10, 6].

A large section of the regulations

deals with “behaviour support plans,” which must be developed if you have a “challenging behaviour.” Again, this is done only as part of service delivery, not before. All of Part III of Regulation 299/10 deals with defining what can, cannot, and must be done if you fit this definition, with a focus on positive be-haviour intervention.

Part IV of Regulation 299/10 deals with requirements for service agencies providing group or intensive support residences.

Finally, Part V of Regulation 299/10 outlines what application entities have to do to promote social inclusion, ensure safety, prevent/report on abuse, handle staff, and maintain records (at a mini-mum, your personal record must include a copy of your application for services and supports, your needs assessment, and your individual support plan).

What happens to people already in the adult system?If you were getting adult services before this Act came into force, you will not need to have your eligibility confirmed. At some point your application entity will do the SIS for you [PD p. 23] and at some point, a service and support pro-file will be developed. It is not clear that would happen if you are receiving ser-vices that the standardized assessment indicates you do not need.

If you have an agreement for fund-ing or service under the previous law, that agreement is considered to be still valid.

What happens if my needs change?Your needs will be reassessed every five years [PD p. 23].

What happens if my needs are urgent?Some shortcuts are available if you ap-proach an application entity with an emergency need for support, without having gone through the usual process [PD p. 24 – 26]. These emergencies

include a loss of housing or loss of a ma-jor support person (such as a parent). You are to be offered help but will also, at some point, be expected to go through the normal application process.

What`s in the law but not in force yet?Some sections of the act are not yet in force and, at time of writing, no date was established for when those sections would be enacted. These are the sections dealing with the direct funding stream, which will be administrated by a third player in the process (the “funding enti-ties”), who will also be involved in setting priorities for what services and supports are funded. Once this system is in place, you will go through your application en-tity to request direct funding. How direct funding will operate is explained in de-tail [11], including the statement that the funds are to be for “purchasing services and supports” (rather than, say, for rent or groceries). Once direct funding exists, you can receive both it and funded ser-vices [2, 13, 13.3]. An additional type of document, the “service and support pro-file,” is to be used to identify the services and supports you are going to purchase [18, 19].

Regulation 276/10 says direct fund-ing can be used for all the ser-vices and supports covered by the Act (see “What Services are Covered Under the Act?”) except housing-related ser-vices and supports.

feature WORKING TOGETHER


Opening Our Doors to New Possibilities

by Lindy Zaretsky, PhD, Executive Director, Geneva Centre for Autism

For more information on Geneva Centre for Autism, contact Lindy Zaretsky at [email protected].

IN SEPTEMBER 2011, I assumed the role of Executive Director of Geneva Centre for Autism (GCA). I am extremely proud to be part of an organization that provides the quality programs and services needed to empower individuals with an Autism Spectrum Disorder, and their families, to fully participate in their communities. It is my intention to build on the legacy of talent and excellence left by my predecessor, Margaret Whelan.

Over the past few months I have visited with and heard from staff, families, exec-utive directors of other organizations, and the GCA Board of Directors. All interac-tions have helped to inform a new strategy for sustainability and growth. I have heard a common message that highlights the need for GCA to not only position itself as a leading organization but as a learning organization as well.

Our collective Call to Action is in three key areas:1. Focus on developing people and their talents so they can do their jobs more ef-

fectively and design innovative programs and service delivery. 2. Set a new direction where shared goals are developed, improvements in op-

erational effectiveness and efficiencies are monitored and evaluated, and open



communication practices are valued.3. Create a more collaborative leader-

ship model, and modify any orga-nizational structures that serve to undermine improvement efforts. This Call to Action opens doors to

many new possibilities. These possibili-ties fall under three key categories, with sub categories listed below:

The metaphor of an open door reflects invitations to learn and lead together. Open doors are helping me re-define GCA’s boundaries, enabling more interactions across internal teams, fami-lies, and with external partners. This will help us adapt and respond to individual and community needs.

Door #1: Leadership for LearningLeadership for Learning involves de-fining purpose, condi-

tions for learning, and contexts in which learning takes

place. The conditions need to promote collaborative learning. The contexts need to invite us to take initiative and respect one another’s contributions. It is critical that leaders are sensitive to how contexts can promote or impede new possibilities. Then together, everyone helps reshape the conditions and contexts to explore new ways of doing.

Distributed leadershipDistributed leadership focuses on how leadership practice is distributed among formal and informal leaders, and how they learn to share their expertise. This helps to build upon and enhance the knowledge and skills of individuals, pur-posefully plan for successions, and create a climate for learning and growth.

Research and innovationGCA is using action research to inquire into our professional practices, and help to inform improvements in our practic-es. This research encourages reflective minds and collaborative inquiry, both within and between organizations.

Transition managementAccording to William Bridges, there are three questions that need asking and an-swering when managing transitions. The first two questions are “What is chang-ing?” and “What will actually be different because of the change?” These ques-tions deal with shifts in our situations. The third question, “Who is going to lose what in the process?” addresses the psychological reorientation that people must go through to make change work. This starts when the affected people let go of their old situation. Even transitions coming from perceived good changes can begin with some kind of loss. Asking this third question facilitates the movement from change management to transition management. We recognize at GCA that we need each other to build a shared un-derstanding of new directions.

A customer service cultureGCA is committed to making the mea-surement of service quality and feedback from the consumer an essential feature of our work. We are working on ways to recognize and communicate excellent ex-amples of customer service. Recognition events and community reports are being explored. It is vital to seize every oppor-tunity to recognize when we as employ-ees are getting it right!

Door #2: Authentic PartnershipsAuthentic partnerships involve trustworthi-ness, sincerity and eth-

ics in the interactions. Authenticity is intentional and is not

contrived. There is a valuing of interde-pendence and diversity and difference of people and their thinking.

Interagency and cross-sector partnershipsAuthentic partnerships find their en-ergy in collective action. Interagency and cross-sector partnerships are grow-ing from a commitment to a shared vi-sion that takes time to develop. GCA has been focused on this development. Key features of authenticity in GCA’s rela-tionships include an openness from all partners to share information and con-tribute to planning and problem-solving. This facilitates the exchange of knowl-edge and expertise that helps build each other’s capacity.

A focus on a continuum of serviceOne emergent authentic partnership is the Ontario Autism Partnership com-prised of Geneva Centre for Autism, Kerry’s Place, Autism Ontario and the Redpath Centre. The leaders of these organizations are bringing people to-gether for inquiry and action as it relates to a more seamless continuum of service. Opportunities to co-sponsor and co-plan conferences and symposia are also being explored.

GCA is also applying these principles to the formation of other partnerships. Partnerships with other agencies and school boards are other examples where commitment to capacity building, and a



continuum and enhancement of service have been made. Within all these part-nership formations, direct attention is being paid to three key areas: 1) building a shared vision; 2) adaptive and flexible leadership models, and 3) collaborative decision-making.

Building on capacityBuilding on capacity through partner-ships involves complementing and en-hancing the fine work each organization is already doing. GCA recognizes the importance of seeking out partnerships for support. One area in which we are seeking this support involves addressing the needs of children, youth and adults with an ASD who are experiencing men-tal health challenges. It is vital that GCA reaches out to organizations serving in-dividuals with mental health needs so that we build upon our capacity to serve those with more complex health needs.

Door #3: Centre and Community-Based ServicesGCA recognizes a need to determine a balance

in provision between centre-based services and commu-

nity-based services. We are taking into account a range of factors that need to be identified to achieve this, including current resources, future resources, the coordination of current and future orga-nizational structures, and the most press-ing service priorities in communities.

Increase service in disadvantaged communitiesGCA has prided itself on directly serving

individuals and families in their homes, schools, and other environments as needed. Now we are looking to have a presence in communities that would be characterized as under-served and disad-vantaged. There are many families and individuals who cannot access us due to financial, travel or time constraints. We will explore ways of providing direct ser-vice in these communities as a means of decreasing the opportunity gap between those who can access us in the Centre and those who cannot.

Providing Centre space to partnersGCA has wonderful space available for those in need of administrative or train-ing space. We are encouraging current and future partners to visit our three buildings. An area to explore would be the integration of service delivery as it relates to administrative functions. The spaces have been designed for a variety of activities involving community members as well as administration.

GCA Training Institute: Customizing sesigns for learningGCA faculty and other program depart-ments are engaged in more collaborative and customized bundling of professional learning in response to individuals and organizations’ needs. These bundles include workshops, consultation, and coaching sessions delivered directly in other organizations’ workplaces.

School and system leaders are rec-ognizing that there are intersecting ed-ucation contexts in which program and service delivery for students with an ASD interact. GCA has worked out a fee-for-service model to address this articulated

need and support further capacity build-ing in school systems.

In closing…or should I say in opening…?Geneva Centre for Autism is opening its doors to new possibilities. An inquiry-based approach to our own and others’ learning will encourage more research and innovation. A focus on consumer satisfaction will help to inform a continu-ous improvement cycle in all that we do to serve others. We are so very excited by all the opportunities that lie ahead in partnership with others.

feature PERSONAL STORY


I wish I could tell youHow intelligent you truly are.

Though you do not understand, when I ask or they demand.

You cannot do a math problem, or read a Shakespeare play,

But you understand this world of ours, in an amazingly different way.

You know no evil, you know no lies.You will never cause hatred, the way this world seems to.

You will never hurt or pain a soul; the most brilliant way to live.

I wish I could tell youTo ignore everyone’s stares

Because they do not know youAnd they never really will.

For all they see, is what makes you differentThey will never see you as a human being,

someone like themThey will never see You, they will only see

what sets you apart. I wish I could tell you

To always be who you are, never let their words bring you down.

Let them call you a retard, let them call you Sped.I promise to be there,

to fight those battles for youLike any little sister would.

I wish I could tell youThat I love you so much

And maybe this time, you could understand me.

When you know I really need it, you tell me with your eyes

But I wish you’d say it back somedayThough I know you never will.

I wish I could tell youThat you’ve taught me so much

As any big brother should,But you do so much more than keep me

from troubleAnd protect me from those boys.

For in your simple, silent actsYou’ve taught me how to see someone –

To really, truly see.Not to judge a person’s image,

as they do the same to me.You’ve taught me patience,

you’ve taught me to always be kind.You’ve taught me by example,

for you do this at all times.I wish I could tell you

How it hurts to see you bleed.I wish I could understand it,

and help you be okay.I wish you didn’t feel like this,

I wish I knew what to say.I wish I could tell you

that you will never be alone.You always have your family to fall back

upon.I wish I could tell you

How proud I’ve always beenTo call myself your sister,

to always be there with youTo see who you’ve become,

to see the lives you’ve brightened.I can never truly tell you

But every day, I try.I will always be here big brother

And somehow we’ll get by.

Big BrotherA Lyrical Poem



Camps on TRACKSCREATING MEANINGFUL SOCIAL INTERACTIONS FOR CHILDREN WITH ASD AND THEIR PEERS

by Laurie Quinlan, BA, BEd, Area Services Supervisor, City of London Carmen Hall, MC, CCC, Coordinator of Autism and Behavioural Sciences, Graduate Certificate Program, Fanshawe CollegeDr. Kimberly Maich, PhD, OCT, Assistant Professor of Education, Brock UniversityKaren Faragher, BA, R/TRO, Thames Valley Children’s Centreand Fatima Machado, BA, BCaBA, ASD Consultant, Thames Valley Children’s Centre

A CITY OF LONDON camper reflected joyously on her day camp experience in the summer of 2011: “It makes me happy because I know I can make friends easier with TRACKS.” The Camps on TRACKS program, often referred to simply as “TRACKS” by the involved campers, uses a peer-mediated approach to take inclu-sion beyond the traditional model and to facilitate interactions among children with Autism Spectrum Disorder (ASD) and their peers.

Camps on TRACKS – created through a partnership between the City of London, Thames Valley Children’s Centre and Fanshawe College, and funded by London’s Child and Youth Network – helps to provide a positive social experience for day campers. For most children, access to camps and other recreation programs can create very positive opportunities for peer-to-peer interactions; however, for many children with ASD, physical proximity to their typically-developing peers alone is not enough to significantly improve social skills (Laushey & Heflin, 2000;



McConnell, 2002). Other research also shows that traditional one-on-one sup-port may actually limit opportunities for inclusion because such adult support is often a barrier to social interaction with peers (Giangreco et al., 1997).

Introduced in City of London in-clusive day camps during the summer of 2011, the Camps on TRACKS program requires adult leaders to teach peers how to interact with children with disabilities and prompt through peers, rather than always assisting children with exception-alities or social challenges directly. This facilitates peer-to-peer interactions. The term “TRACKS” itself is a child-friendly mnemonic used to teach typically-devel-oping children the research-supported behavioural skills they need in order to use this approach.

Camps on TRACKS includes four primary stages:1. Camper Awareness Activities: Here, campers overcome challenges chil-dren with disabilities may face and focus on strengths of ASD. 2. TRACKS Training: In this stage, leaders teach campers (peers) the behavioural skills to help them interact with children with excep-tionalities and social challenges.3. Prompting Through Peers: In stage three, leaders prompt campers to use the TRACKS skills in natural set-tings to facilitate social interactions.

• Try Again (Persistence)• Right Thing (Correcting)• Assist (Prompting)• Congratulate (Reinforcement)• Keep Trying (Persistence)• Show (Modeling)

“Throughout the course of the week it’s been very neat to see the social in-teraction that [my child] has had... The TRACKS program facilitated a lot of this interaction, where the campers would try multiple times in different ways to interact with [her] and get her to en-gage with them... it’s been really neat to see how [she] has come such a long way from the beginning of the camp to now.” (Parent of City of London camp-er, Summer 2011)

4. Reward System: Lastly, in the final stage, leaders recog-nize and reward campers for using these skills with one another.

With over 120 children with spe-cial needs attending City of London day camps in 2011, TRACKS played a sig-nificant role in increasing opportunities for meaningful social interactions be-tween campers of all abilities. Although the initial intent of the program was to focus on campers with ASD, the strate-gies benefitted numerous other campers by building a stronger sense of commu-nity at camp and placing an emphasis on being helpful to one another.

Camp staff also noticed a change in their program environment due to the implementation of TRACKS. “I’ve definitely seen an increase in peer inter-actions with TRACKS,” stated Keyena Smith, a long-time Camp Counsellor. “What was once a leader-centred atmo-sphere is now child-centered. They’re doing things for each other and making sure that all campers are included... Our whole atmosphere is so positive, and the campers want to help each other. I think it’s an amazing program.”

In the summer of 2011, funding from Fanshawe College’s Applied Research, Innovation, and University Partnerships, provided an opportunity to investigate the effects of the program. Nine chil-dren with ASD were observed over the

summer with their interactions with peers. Together, the research demon-strated a significant increase in the camp counsellors’ perceptions of the social skills of the children with ASD (Z=0.38, p<0.05). These skills were measured from the beginning of camp (Mean=112) to the end of camp (Mean=125) using the Autism Social Skills Profile (Bellini, 2006). A trained data collector also ob-served interactions between the children with ASD and their peers. Although not all children demonstrated large increases in observed social skills in the observa-tion periods, interactions with adults tended to decrease, while interactions with peers increased, simultaneously. In addition, the number of successful peer responses was high, demonstrating the positive effects of peer training.

All photos courtesy of City of London



TRACKS strategies can be easily transferred to any recreational setting. Parents can promote the use of TRACKS in their children’s recreation programs by educat-ing coaches and instructors on how to use a peer-mediated approach, with specific suggestions about how the program can be customized to suit their child’s needs. Recreation leaders will often experience a reduced need for one-on-one support once peers become familiar with TRACKS and start to use the strategies on their own, without prompting from adults.

Finally, as peers become comfortable interacting with children who have social challenges, new friendships may also start to develop. For example, “Everywhere I go, children are stopping and saying ‘hi’ to [my child] or pointing at [him] and telling their parents about him,” said a parent of a City of London camper, “He has so many camper friends.”

“TRACKS is an awesome program be-cause it teaches you how to be a good friend to others and how to do the right thing,” said an 11-year-old camp-er. “It made our summer better.”

ReferencesBellini, S. (2006). Building social relationships: A systemic approach to teaching social interaction skills to children and adolescents with Autism Spectrum Disorders and other social difficulties. Shawnee Mission, KS: Autism Asperger Publishing Co.

Giangreco, M., & Edelman, S.(1997). Helping or hovering? Effects of instructional assistant proximity on students with disabilities. Excep-tional Children, 64(1), 7-18.

Laushey, K., & Heflin, L. J. (2000). Enhancing social skills of kindergarten children with autism through the training of multiple peers as tutors. Journal of Autism and Developmental Disorders, 30(3), 183-193.

McConnell, S. (2002). Interventions to facilitate social interaction for young children with autism: Review of available research and recommenda-tions for educational intervention and future research. Journal of Autism and Developmental Disorders, 32(5), 351-372.

Further Information:For more information about the TRACKS research project, contact Carmen Hall at [email protected]. For more information about the Camps on TRACKS program, contact Laurie Quinlan at [email protected].

Laurie Quinlan has obtained publication permission for all included quotes and photos.

If you care about someone with Autism, please help us to help them!

In order to successfully advocate for adults with Autism and Aspergers we need you to add your voice. Go to our website www.autismontario.com/adults and fill out the “Count Me In” registration form. This registry consists of adults living with ASD in Ontario, their family members, their supporters and their service providers. Numbers are powerful tools to take to Ontario Govern-ment leaders. Please don’t wait, complete the form today. Those who need services and supports are counting on you! COUNT ME IN!

AutismONTARIO

Ontario Partnership forAdults with Aspergers and Autism

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Perspectives d’une Aspie

par Anne Gingras À 14 H 13 LE 21 jUIN 2011 dernier, assise dans le bureau de la psychologue de grande renommée Isabelle Hénault, à Montréal, j’ai enfin reçu un diagnostic qui éclaire maintenant toute mon existence : je suis bel et bien Aspie.

Toute ma vie, j’ai su que j’étais différente : j’aimais mieux passer du temps à lire mes livres, enfermée dans ma chambre que d’être avec des gens. A l’âge de quatre ans, j’avais l’oreille absolue et j’étais capable de trouver n’importe quelle mélodie au piano. Je dois encore porter des vêtements confortables en tout temps et toute jeune, on devait déjà m’avertir des changements qui seraient à mon horaire, sinon je faisais des crises incroyables (rouquine – on a toujours cru que c’était mon tempérament qui faisait en sorte que je me fâche si rapidement). Mes années d’adolescence furent cousues de peine et d’intimidation – je ne comprenais pas la vie sociale des gens qui m’entouraient, et je ne voulais rien faire avec les autres. Je retrouvais mon calme dans mon monde tapissé de livres et de musique – où je pouvais briller ou me retirer – selon la situation qui se présentait. A l’Université d’Ottawa, j’ai obtenu une moyenne quasi-parfaite. Je suis devenue enseignante de musique et de langues, pour ensuite me diriger dans mon accompagnement en autisme au sein d’un conseil scolaire. Je suis très fière de mes exploits, mais j’avoue que je suis encore quelque peu frustrée de ne pas avoir reçu une note parfaite pour un de mes examens finals – et ce, plus de vingt ans plus tard!

Bien que, jeune adulte, je ne recherchais pas du tout un aspect social à ma vie – j’ai trouvé, il y a plus de vingt-trois ans et à la surprise de plusieurs je suppose, LE partenaire idéal. Mariés depuis plus de dix-neuf ans, nous avons une belle famille, avec deux adolescents, dont un qui est âgé de dix-huit ans et qui a aussi un trouble du spectre de l’autisme (TSA). Mon époux est un homme incroyablement patient, innovateur et qui possède un sens de l’humour incroyable – ce qui lui permet probablement de survivre dans son univers, entouré de deux personnes ayant un TSA.

Parce que j’accompagne depuis si longtemps mon fils en utilisant plusieurs stratégies, je réussis moi-même à mieux cheminer dans un univers neurotypique : je me fais des horaires, je planifie mes journées en fonction de mes besoins... je choisis avec qui je m’associe et ce, tout dans le but ultime de mieux fonctionner. La respiration en carré enseignée à mon fils dix ans passés est probablement ce qui fut et qui est encore l’élément le plus utile de ma démarche personnelle et professionnelle. Je suis parfois très impulsive ou anxieuse – et lors de rencontres d’affaires importantes, la

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respiration en carré me ramène à la réalité et me permet de cheminer de façon plus appropriée. J’utilise même un système de renforcement pour me motiver à terminer mes tâches – ce qui peut être très difficile pour moi. Présentement, je suis accompagnatrice en autisme au sein d’un conseil scolaire – je travaille avec une cinquantaine de jeunes qui m’en apprennent à chaque jour. Je remarque que leurs défis et leurs succès sont souvent miroir des miens. En février prochain, je retournerai en salle de classe, dans le monde de la musique. Les changements sont importants dans ma vie car je deviens vite ennuyée et je suis donc à la recherche continuelle de nouveaux défis à relever. Je suis une personne « aspie » qui aime la structure , et non la routine – je veux constamment me dépasser et donc, je n’arrête pas souvent ma quête de défis – ce qui peut, à la longue, devenir fatigant et qui me force à me calmer, à reprendre mes énergies et à méditer. Souvent, après ma journée de travail, je suis tellement épuisée que je dois littéralement m’isoler pendant une heure – sans bouger ni parler à personne. Je suis physiquement vidée et c’est pénible, voir impossible d’interagir avec quelqu’un à ce moment-là.

Comme adulte qui vit avec le syndrome d’Asperger, je cherche toujours des ressources qui pourraient m’aider. Je masque bien plusieurs symptômes – mais j’aimerais bien qu’il y ait quelqu’un, quelque part, qui puisse m’aider avec certains aspects plus subtils. Dans ma région, on me reconnait comme une « experte » en autisme : j’ai les études, le vécu personnel et je porte le diagnostic moi-même… mais je vous avoue que je me sens parfois très seule dans mon cheminement : les gens qui devraient me comprendre me disent souvent que j’utilise mon Asperger comme excuse, et que je fonctionne bien – alors pourquoi même dire aux gens que j’ai ce syndrome...? Vaudrait mieux cacher la vérité? Pas du tout! En fait, je suis fière et soulagée d’enfin comprendre pourquoi toute ma vie j’ai vu la vie de

façon différente…. Et je crois que mon apport à cette sensibilisation à l’autisme ne fera que faire avancer les choses pour nous!

Je fais quoi donc pour avoir une vie « normale »? Je fais souvent semblant. J’étudie la nature humaine : j’ai lu des tonnes de bouquins traitant du langage corporel et des règles sociales non-écrites. Je lis des livres qui traitent de stratégies en autisme et tente d’en choisir quelques-unes qui sont pertinentes dans ma vie quotidienne. Je pose des questions aux membres de ma famille ainsi qu’à mes collègues et amis lorsque je ne suis pas certaine de ce qui se passe autour de moi. Et parfois, je prends une journée seule à la maison pour me remettre des semaines plus difficiles où j’ai à interagir soit dans des rencontres ou lors de présentations. Je préviens aussi mes collègues et mes superviseurs que j’ai parfois des difficultés en raison de mon autisme... ce qui pourrait leur expliquer pourquoi je dois parfois travailler à la noirceur plutôt qu’à la lumière des fluorescents infernaux. Aussi, parce que j’oublie tout et que je ne peux pas me rappeler des détails pertinents de ma journée quotidienne (mais je peux vous redire des faits au sujet de banalités incroyables...), je me fais des listes et j’utilise mon nouvel

outil préféré : mon iPad2. En salle de classe, j’ai toujours des

trousses sensorielles disponibles pour mes élèves – et j’y insère des petites choses que j’utilise moi-même pour me calmer, tout en leur montrant à bien s’en servir. L’avènement de l’Internet me permet de communiquer avec mes amies et ma famille en ligne : pas besoin de toujours se voir pour savoir ce qui se passe et laisser aux gens savoir qu’ils ont de l’importance pour moi. Je me garde à la fine pointe des nouveautés en autisme, et je participe à quelques groupes d’appui pour personnes aspies en ligne. Enfin, je garde mon sens de l’humour : on dit que le rire peut aider à alléger des situations difficiles – vaut mieux rire que pleurer… j’aborde donc la vie avec un esprit ouvert et optimiste, et même si des fois les situations peuvent sembler insurmontables, je sais qu’en bout de ligne, celles-ci passeront elles-aussi. Mon nom est Anne Gingras, j’ai 41 ans et je suis fière d’être une Aspie!

Anne Gingras est enseignante au Conseil scolaire catholique Franco-Nord de North Bay. Elle vit à Sturgeon Falls avec Bill, son époux incroyable, ses deux fils adolescents et ses trois chiens. Elle passe ses moments de loisirs à lire, à explorer ses talents musicaux et à rêver de Paris...

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FéLICITATIONS À MARGARET SPOELSTRA, directrice générale d’Autisme Ontario, récipiendaire de l’Ordre du Canada dans le domaine des Services de santé. L’Ordre du Canada est l’une des plus prestigieuses distinc-tions honorifiques civiles du pays. Marg fait maintenant partie des plus de 5 000 récipiendaires de l’Ordre du Canada depuis sa création en 1967. Cet honneur souligne le dévouement exceptionnel de Marg envers les personnes présentant un trouble du spectre de l’autisme (TSA) et leurs familles. Son but, accroître l’acceptation et la qualité de vie des per-sonnes ayant un TSA, guide ses efforts auprès des sections locales d’Autisme Ontario, des fournisseurs de services et des décideurs. Félicitations Marg!

Ordre du Canada

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On parle déjà de camp d’été?IL PEUT SEMBLER tôt pour parler de camp d’été mais les parents d’enfants et de jeunes présentant un trouble du spectre de l’autisme (TSA) et ceux qui offrent les camps d’été savent très bien que la planification commence en même temps que les premières bordées de neige!

Dans ce numéro, vous trouverez un article rédigé par M. Jean-Baptiste Arhanchiague, responsable du camp d’été offert par la Société franco-ontarienne de l’autisme depuis sa création il y une dizaine d’années. Jean-Baptiste nous présente le camp tel qu’il se déroule aujourd’hui, sûrement le résultat des expériences et des leçons des derniers dix ans. Le message est clair. La réussite d’un camp repose sur une vision, une planification à point, une approche d’équipe et une collaboration exceptionnelle avec les parents et les partenaires communautaires. Bien que Jean-Baptiste parle de camp d’été, les idées s’appliquent également à d’autres expériences de camp ou de programmes offerts aux enfants ayant un TSA.

Voici quelques renseignements pour vous aider à planifier les vacances d’été :• AutismeOntarioestresponsableduFondsderemboursementpourlepersonnel

de soutien individuel durant les vacances d’été. Ce Fonds est mis à la disposition des parents pour les aider à défrayer les coûts reliés à l’embauche de personnel de soutien individuel pendant l’été. Afin de vous assurer de recevoir les renseignements à propos de ce Fonds aussitôt qu’ils sont affichés, visitez www.autismontario.com et cliquez sur E-news/Nouvelles pour vous inscrire sur la liste d’envoi.

• AutismeOntariooffreuneressource spécialiséeconçuepouraider lesparentsontariens à trouver un programme ou un camp pour leurs enfants ou adolescents ayant un TSA. Pour accéder aux fiches de renseignements ainsi qu’au répertoire de camps inscrits, veuillez visiter le site internet suivant : www.autismontario.com/calypso.

• Vous pouvez communiquer avec votre section locale d’AutismeOntario pourvous informer de ce qui est offert dans votre région. Visitez www.

autismontario.com et cliquez sur « Sections locales et ressources ». Vous avez des renseignements au sujet de camps d’été franco-

phones que vous souhaitez partager? Envoyez-nous un courriel à [email protected].

INFO AUTISME


Un beau spectacle! Une belle fin de camp!Par Suzanne Murphy

Si vous souhaitez faire partie de notre liste d’envoi EN FRANÇAIS et recevoir notre bulletin de nouvelles de même que des nouvelles relatives à l’autisme, veuillez visiter www.autismontario.com et cliquez sur E-news/Nouvelles.

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AU MOIS DE jUILLET DERNIER, j’ai reçu une invitation pour venir voir le spectacle de fin du camp d’été à l’école élémentaire publique de l’Odyssée, située juste à l’Est d’Ottawa. J’avais beaucoup entendu parler du camp offert par la Société franco-ontarienne de l’autisme et organisé par Jean-Baptiste Arhanchiague et son équipe depuis dix ans mais je n’avais jamais eu la chance de le visiter. Afin de profiter au maximum du voyage à Ottawa, j’ai demandé à visiter le camp la veille du spectacle.

Je reçois un accueil chaleureux de Jean-Baptiste; voilà qui commence bien ma visite! Nous nous promenons d’un local à l’autre. Je rencontre les jeunes et le personnel. Je ressens l’énergie partout! Après notre petite promenade, Jean-Baptiste prend le temps de m’expliquer les éléments essentiels à la réussite d’un camp. Ma visite prend fin avec l’arrivée de l’autobus. C’est l’heure de la baignade!

Le jour du spectacle arrive. Les « campeurs et campeuses », les moniteurs, les parents et les invités s’organisent. On nous souhaite la bienvenue et quelques

participants prononcent quelques mots de félicitations et de remerciement à l’occasion du 10e anniversaire du camp. Les mots d’une maman me touchent. Son fils participe au camp depuis le début. Elle est reconnaissante du dévouement et du travail nécessaire à la mise en œuvre d’un camp tel que celui-ci. Sans le camp, son fils n’aurait rien à faire pendant l’été. Elle termine avec un gros merci!

Le spectacle commence! Les chansons, les danses et les petits sketchs mettent en vedette les petits et les grands. Certains jeunes profitent de leur passage sur scène pour faire un peu d’improvisation; les éclats de rire chez les spectateurs les encouragent d’ailleurs à en faire davantage! Je suis témoin d’une vraie joie, sur scène comme dans l’auditoire. Je vois des grands sourires partout! La fierté est évidente!

Après le spectacle, on déguste un vrai dîner de camp. Le gâteau soulignant le 10e anniversaire du camp est délicieux!

Un gros merci pour l’invitation à faire partie de cette célébration.

Félicitations à Jean-Baptiste, à son équipe et à la Société franco-ontarienne de l’autisme qui ont bien des raisons de célébrer le 10e anniversaire du camp « Autour du monde »!

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L’INITIATIVE D’UN CAMP D’éTé pour les enfants et les adolescents ayant un TSA est née du désir de parents d’élèves de ma classe distincte. À la fin de l’année sco-laire, en juin, ils étaient inquiets et craignaient que leurs enfants perdent leurs acquis sur les plans cognitif, social et psychomoteur durant les deux longs mois de vacances. Je me suis dit : Pourquoi ne pas offrir un camp d’été à mes élèves et à d’autres? J’ai fait part de mon idée à la présidente de la Société franco-ontarienne de l’autisme, qui l’a immédiatement acceptée.

Nous avons travaillé ensemble au recrutement de partenaires pour financer notre projet, car pas d’argent, pas de camp. Le ministère des Services à l’enfance et à la jeunesse, la Ville d’Ottawa, Emploi d’été Canada et d’autres bailleurs de fonds ont accepté de soutenir financièrement notre aventure. Pour la mise sur pied du camp, nous avons bénéficié de l’aide du Conseil des écoles publiques de l’Est de l’Ontario, du Conseil des écoles catholiques du Centre-Est, Coordination des services et du

Éléments clés de la réussite d’un camp d’été pour les enfants et les adolescents ayant un TSA

Par Jean-Baptiste Arhanchiague

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Programme d’intervention en autisme du CHEO (Centre Hospitalier de l’Est de l’Ontario).

Le camp « Autour du monde » se déroule à l’école élémentaire publique L’Odyssée, dans l’Est de la ville d’Ottawa. Nous utilisons les salles de classe, le gymnase, le laboratoire d’ordinateurs et la salle sensorielle. Nous jouissons de grands locaux climatisés. Nous disposons de quatre grands trampolines, de deux bicyclettes stationnaires, de trottinettes et de voiturettes « PlasmaCar ». Chaque groupe d’âge possède une vaste panoplie de jeux éducatifs. Nous avons gratuitement accès à OC Transpo, le service de transport de la ville, ce qui nous permet de nous rendre à la piscine et d’effectuer des sorties dans les musées et les parcs de la ville.

Cette année, nous avons célébré le 10e anniversaire du camp « Autour du monde », qui a accueilli 59 jeunes de 4 à 21 ans au cours de l’été. Les enfants et les adolescents sont divisés en équipes : deux équipes pour les plus jeunes, deux équipes pour ceux d’âge moyen et deux équipes pour les plus vieux. Le nombre de jeunes dans chaque équipe varie selon la nature de leurs difficultés d’ordre comportemental. Chaque équipe compte au moins trois moniteurs. Trois autres moniteurs « volants » sont disponibles sur demande pour apporter un soutien à chacun des groupes d’âge : un pour les plus jeunes, un pour ceux d’âge moyen et un pour les plus vieux.

Le camp se déroule durant les quatre semaines du mois de juillet. Les jeunes arrivent en taxi le matin à 9 h et retournent à la maison à 16 h. Les moniteurs travaillent de 8 h 30 à 16 h 30. Ils ont une demi-heure le matin pour préparer la journée et une demi-heure en fin de journée pour faire le ménage et planifier les activités du lendemain.

La programmation du camp s’effectue selon un horaire structuré : quatre blocs d’activités le matin et quatre blocs l’après-midi. Les activités offertes sont les suivantes : la musique, l’activité

physique, les arts visuels et l’orthophonie. Chacune de ces activités est animée par un moniteur. Pour l’orthophonie, une orthophoniste du Conseil des écoles publiques assure la programmation et la supervision. Deux moniteurs interviennent lors des thérapies de groupe ou des thérapies individuelles. Des sorties quotidiennes sont également à l’horaire, pour se rendre à la piscine, dans les parcs et dans les musées. Cette année, nous sommes allés aux glissades d’eau.

Les moniteurs que nous embauchons sont des étudiants de niveau collégial ou universitaire. Nous organisons des entrevues individuelles et des entrevues de groupe au mois de mai pour recruter les moniteurs. Chaque année, environ la moitié des moniteurs reviennent. Les moniteurs ont une semaine de formation payée avant le début du camp. Durant la formation, les moniteurs sont sensibilisés aux troubles du spectre de l’autisme (TSA). Ils suivent entre autres des séances de formation en gestion du comportement et en communication. Les séances de formation sont axées autant que possible sur des aspects concrets et pratiques. Nous partons des profils de chacun des enfants pour concevoir des appuis visuels, établir des systèmes de renforcement et préparer des jeux. Nous initions les moniteurs aux méthodes d’analyse comportementale appliquée (ACA) afin de les aider à intervenir adéquatement auprès des enfants.

Au cours des semaines qui précèdent le camp, j’établis avec les parents un profil détaillé de chaque enfant qui fréquente le camp, afin de mieux le connaître. Nous recueillons des informations entre autres sur le système de communication, les intérêts, les loisirs, les activités préférées, les défis sur le plan comportemental et les besoins sensoriels… de l’enfant.

Nous choisissons un thème pour le camp. Cette année nous avons choisi le thème « À l’eau ». Nous avons une chanson thème qui sert de cri deralliement. Toutes les activités du camp

sont un prétexte pour préparer un spec-tacle qui est toujours présenté l’avant-dernier jour du camp. Par exemple, en musique, les enfants préparent des choré-graphies ou des chants. En arts visuels, ils préparent les décors. Les parents et les amis sont invités au spectacle. Un dîner est offert à tous.

La communication entre les parents et les moniteurs est primordiale. À chaque jour, les moniteurs donnent aux parents une courte rétroaction de la journée de leur enfant dans un cahier de communication, et les parents à leur tour donnent un compte-rendu de la soirée de l’enfant. De plus, les parents savent qu’ils peuvent en tout temps communiquer avec moi.

Dans leur rétroaction, tous les parents mentionnent à quel point leur enfant a hâte de venir au camp le matin. Ils sont unanimes pour dire que le camp est très bénéfique pour leur enfant. Les moniteurs, bien que fatigués à la fin du camp, sont également ravis de leur expérience.

Le nombre d’enfants et d’adolescents qui s’inscrivent au camp ne cesse de croître; c’est un signe que le camp répond à un besoin au sein de la communauté francophone.

L’écrivain Antoine de St-Exupéry disait : « Il faut exiger de chacun ce que chacun peut donner ». Tous les intervenants sont fiers de permettre à ces jeunes de réaliser leur potentiel et de rêver comme le font tous les enfants.

Merci à tous les parents et à tous les partenaires qui permettent à ces enfants de rêver…


INFO AUTISME

Charles Thé[email protected]

Jean-Baptiste Arhanchiague adore son travail. Contrairement à plusieurs enseignants qui sont épuisés mentalement après un certain temps, cet enseignant iti-nérant spécialisé en autisme ne s’imagine pas faire autre chose que ce métier qui le passionne.

M. Arhanchiague travaille pour le Conseil des écoles publiques de l’Est de l’Ontario (CEPEO), ce qui l’oblige à parcourir un vaste territoire pour rencontrer les élèves, puisque le CEPEO a des écoles à Ottawa, dans la région de Prescott-Russell, ainsi qu’à Cornwall, Kingston, Trenton et Pembroke.

Il supervise les services offerts à quelque 140 élèves autistes répartis dans les écoles primai-res et secondaires. « Le spec-tre de l’autisme est très grand. Certains élèves sont très intel-ligents, d’autres ont des limi-tes plus importantes, alors que certains ne parlent même pas », explique M. Arhanchiague qui travaille au conseil scolaire depuis 25 ans.

le goût de l’aventureOriginaire du pays basque,

dans le sud-ouest de la France, Jean-Baptiste Arhanchiague a débuté sa carrière dans sa région natale auprès des ado-lescents en difficulté. Sa langue maternelle est le basque ; il a appris le français à partir de l’âge de sept ans. « Je parle bas-que encore aujourd’hui et toute ma famille est encore là-bas. Lorsque j’étais jeune, il était interdit d’enseigner le basque à l’école. Mais depuis les années 1980, on peut faire ses études primaires et secondaires dans notre langue ».

La rigidité du système d’ensei-gnement français et un certain goût de l’aventure ont joué un rôle dans la décision de Jean-Baptiste Arhanchiague de venir vivre au Canada. « J’avais besoin de changer d’air. Dans mon enfance, j’ai souffert un peu du système d’enseignement très axé sur l’instruction et non sur la pédagogie. Les profes-seurs étaient très bons dans leur matière, mais n’étaient pas des pédagogues. Et si je sentais qu’un professeur ne pouvait pas créer de lien avec moi, je dérangeais la classe, alors que lorsque j’aimais le professeur, j’avais les meilleures notes. Je me souviens d’un professeur qui avait écrit dans mon bulletin : ‘élève aimable’. Hé tabarouette, si je le rencontrais aujourd’hui, je le serrerais dans mes bras : ça m’avait beaucoup touché ! »

« Quand je suis arrivé ici, j’ai trouvé que le système d’éduca-tion était mieux adapté », dit-il.

Attiré par le Canada, Jean-Bap-tiste Arhanchiague est arrivé à Ottawa en 1982, tout en sachant qu’il y avait du travail dans le monde de l’enseignement. Après avoir travaillé durant cinq ans comme psychoéducateur avec des jeunes présentant des pro-blèmes de comportement, il s’est orienté vers une formation d’en-seignant.

Comprendre les jeunesDe retour au Centre d’étude

de l’enfant de l’Université d’Ot-tawa, on lui a conseillé d’aller travailler quelques années dans des classes régulières avant de revenir œuvrer auprès de ceux qui ont des difficultés. « Aujourd’hui, je remercie ceux qui m’ont fait cette suggestion. Lorsqu’on travaille tout le temps avec des jeunes en difficulté, on perd de vue ce qui est nor-mal. J’ai donc enseigné à l’école Séraphin-Marion durant douze ans et j’ai adoré cette expérien-ce-là. Mais, en enseignement, on se rend compte que 80 % des élèves n’ont pas besoin d’aide.

Ils apprennent parce qu’ils sont bons et c’est facile pour eux, mais moi, je m’intéresse surtout aux 20 % qui ont de la difficulté à appendre. Je me demande tou-jours : ‘Comment ça se fait qu’ils ne réussissent pas ?’»

Un intérêt que ces patrons et collègues ont bien remarqué. « Je me suis rendu compte qu’on m’envoyait de plus en plus les enfants en difficulté. Après un certain temps, j’avais beaucoup d’expérience avec les jeunes en difficulté et comme il était ques-tion d’ouvrir les classes pour les autistes, ça m’a intéressé. J’aime la différence. Entrer dans le monde des autistes, c’est comme entrer dans un nouveau pays. »

Selon lui, chaque enfant autiste est différent et il faut entrer dans son monde pour le comprendre. « Les plus intelligents sont ceux qui ont le syndrome d’Asperger, qui sont souvent très savants dans un seul domaine. Ils réus-sissent très bien à l’école, mais l’adolescence est difficile pour eux, car ils n’ont pas beaucoup d’amis. Ils sont souvent rejetés et victimes d’intimidation. Il est important de leur rappeler qu’ils ne sont pas les seuls à être dans cet état. »

Lors de ses rencontres avec les jeunes autistes, Jean-Bap-tiste Arhanchiague les aide à traverser les difficultés à l’école. « Lorsqu’ils sont victimes d’inti-midation, comment vont-ils réa-gir ? Comment gérer leur colère, leur anxiété et comment se faire des amis ? J’aide aussi les profes-seurs à comprendre les enfants autistes et aussi à préparer des plans d’intervention. Je suis donc itinérant et j’aide les élèves et les professeurs un peu partout sur le territoire du CEPEO. »

M. Arhanchiague a aussi fondé un camp d’été pour jeunes autis-tes, à l’école l’Odyssée, à Orléans. Un camp qui fêtait cet été son 10e anniversaire. « Je l’ai créé à la demande des parents qui crai-gnaient que leurs enfants per-dent leurs acquis durant l’été. C’est très ludique, mais aussi très structuré. J’ai embauché

30 moniteurs et parmi ceux-ci, plusieurs ont découvert leur vocation en faisant ce travail », ajoute-t-il.

Il ne prend pas beaucoup de vacances, admet-il. « C’est ma passion. Et même si j’approche de l’âge de la retraite, je n’envi-sage pas ça du tout. Je ne veux même pas y penser. Mon seul passe-temps est la lecture et si je n’ai plus la santé nécessaire,

j’irai travailler pour un organis-me communautaire qui vient en aide aux autistes », conclut-il.

La chronique Personnalité de la semaine est diffusée le lundi,

à 8 h 40, à l’émission Bernier et Cie, animée par Carl Bernier à la radio de

Radio-Canada au 90,7 FM, ainsi qu’au Téléjournal Ottawa-Gatineau de 18 h

présenté par Michel Picard, à la télévision de Radio-Canada.

Une présentation de

PATRICK WOODBURY, LeDroit

L’esprit des jeunes autistes fascine Jean-Baptiste Arhanchiague, ensei-gnant itinérant spécialisé au CEPEO. « J’aime la différence. Entrer dans le monde des autistes, c’est comme entrer dans un nouveau pays. »

Depuis plusieurs années, Jean-Baptiste Arhanchiague œuvre auprès des élèves

autistes du CEPEO. Fasciné par leur monde, il les aide à traverser des moments

parfois difficiles de leur vie. Aujourd’hui, LeDroit et Radio-Canada saluent son tra-

vail en lui décernant le titre de Personnalité de la semaine.

Jean-Baptiste Arhanchiague, enseignant spécialisé en autisme

Fasciné par ces esprits différents

Charles Thé[email protected]

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Charles Thériault, LeDroit, Ottawa et Patrick Woodbury, LeDroit, Ottawa

INFO AUTISME


OTTAWA – La Table provinciale francophone pour la personne handicapée (la Table) rassemble des personnes qui vivent avec un handicap ainsi que des représentants et représentantes d’organismes et d’institutions qui leur offrent des services. Ses administrateurs et administratrices représentent les diverses régions de la province.

Le mandat de la Table consiste à éduquer, renseigner et revendiquer en faveur de la personne qui vit avec un handicap en Ontario français. Ses membres souhaitent donner aux francophones qui vivent avec un handicap les moyens de se faire entendre, promouvoir et encourager leur participation aux activités de leur communauté, développer des liens intersectoriels et encourager le réseautage au sein des communautés pour le bénéfice de ces personnes. La Table est reconnue par le ministère du Patrimoine canadien comme l’organisme provincial francophone chargé de la concertation au sein du secteur des besoins spéciaux en Ontario français.

Au cours de la dernière année, la Table a réalisé son mandat en offrant, par exemple, des webinaires sur des thèmes diversifiés, l’objectif étant de réduire les obstacles auxquels sont confrontées les personnes qui vivent avec un handicap et de leur donner accès à des renseignements qui, bien souvent, ne sont pas à leur portée. Les webinaires ont porté sur le Programme de financement direct pour les services d’auxiliaires autogérés de l’Ontario, les Cartes d’accès pour le transport et les loisirs, le programme Vivre en santé avec une maladie chronique et une série de cinq webinaires sur l’autisme. Tous ces renseignements sont disponibles sur le site Internet de la Table.

À l’occasion de la Journée internationale des personnes handicapées, la Table a également lancé l’un des plus importants sondages jamais réalisés dans le but d’identifier les obstacles rencontrés par les francophones qui vivent avec un handicap ou une maladie débilitante, leurs aidants, leurs parents, les intervenants ainsi que les organismes et institutions qui les appuient de près ou de loin. Les résultats de ce sondage seront dévoilés à la fin février 2012.

La Table provinciale francophone pour la personne handicapée vise à promouvoir l’accessibilité

Pour plus de renseignements :Denise Leroux, DirectriceTable provinciale francophone pour la per-sonne handicapéeTél. : 613-834-4257Courriel : [email protected] Web : www.personnehandicapee.on.ca


INFO AUTISME

Porteuse de la médaille Rick Hansen. Quelle expérience! Quel privilège!

Par Suzanne Murphy

LA TOURNéE MONDIALE RICK HANSEN (1985-1987) est bien connue! Pendant deux ans, deux mois et deux jours, Rick a parcouru plus de 40 000 km dans 34 pays sur 4 continents en fauteuil roulant, avec son équipe. Son rêve? Sensibiliser le public au potentiel des personnes ayant des handicaps, créer un monde accessible et inclusif et découvrir un traitement pour la lésion médullaire. Un homme…un rêve!

Vingt-cinq ans plus tard, le travail et surtout le rêve continuent! Le 24 août 2011 marque le début du Relais du 25e Anniversaire de la Tournée mondiale Rick Hansen. Le Relais retrace la portion canadienne de la Tournée mondiale. Une différence prin-cipale existe cette fois-ci. Rick Hansen invite 7 000 porteurs et porteuses de la médai-lle à appuyer la cause. Un homme en mouvement devient « Unis en mouvement ».

Le 11 décembre dernier, j’ai eu la chance d’être une des 12 porteurs de la mé-daille à Parry Sound. Choisis à titre de « faiseurs de différence », nous avons par-couru une petite portion de la route originale de Rick Hansen et contribué à son rêve d’inciter une nouvelle génération de Canadiens et de Canadiennes à créer un monde plus sain et plus inclusif.

La médaille, le symbole de ce rêve, représentait différentes choses pour différents porteurs et porteuses, soit la mort d’un proche, les victimes de lésion médullaire, l’acceptation et l’inclusion de tous ou un signe de reconnaissance de leur contribution à la collectivité. C’est avec une grande fierté que j’ai porté la médaille pour les per-sonnes ayant un trouble du spectre de l’autisme (TSA) et autres besoins particuliers,

leurs parents et leurs familles, les gens qui les appuient et les aident à réaliser leur potentiel mais surtout pour leur

droit d’être inclus. J’ai aussi porté la médaille pour mon amie Cheryl, devenue quadraplégique à la suite d’un accident d’auto.

Avoir été choisie comme porteuse de la médaille était un réel privilège, une expérience qui m’a touché profondément et qui me guidera dans l’avenir! Un gros merci à la Fondation Rick Hansen et surtout à Rick lui-même d’avoir pour-

suivi son rêve depuis plus de 25 ans et de nous avoir invités à le vivre avec lui.

Invitation à contribuer à notre magazine

En prévision de futures publications d’Info Autisme, nous vous invitons à nous soumettre des articles, des lettres d’opinion, des suggestions, etc. aux coordonnées suivantes : [email protected] ou 1-800-472-7789, poste 240.

Les pictrogrammes II : En route vers l’autonomie!

est disponible à http://www.lespicto-

grammes.com/

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Finding professional services for children with autismServices professionels pour les enfants autistes

SPIRALE is designed to help Ontario families find professional services for their child with Autism Spectrum Disorder (ASD). Visit the site for information and to search for professionals who have listed in your area.

SPIRALE est un site Web conçu pour aider les familles ontariennes à trouver des services professionnels pour leur enfant ayant un trouble du spectre de l’autisme (TSA). En le visitant, vous y trouverez de l’information utile ainsi que les noms et coordonnées de professionnels de votre région qui se sont inscrits à l’un des registres de Spirale.

www.autismontario.com/spirale

Audiologist/AudiologisteDental hygienist/Hygiéniste dentaireDietitian/Diététiste Early Childhood Educator/ Éducateur ou éducatrice de la petite enfance

Optometrist/OptométristePhysiotherapist/PhysiothérapeuteDentist/DentisteMassage Therapist/MassothérapeuteOccupational Therapist/Ergothérapeute

Psychologist/PsychologueSocial Worker/Travailleuse sociale ou travailleur socialSpeech-Language Pathologist/Orthophoniste

This service is produced with support from the Ontario Ministry of Children and Youth Services.Cet service est produit grâce au soutien du ministère des Services à l’enfance et à la jeunesse de l’Ontario.

Spirale ad Autism Matters 1 1/25/12 3:20 PM


feature EDUCATION

From the Outside InTHOUGHTS ON EFFECTIVE SPECIAL EDUCATION ADVOCACY

EFFECTIVE SPECIAL educational advocacy involves a student-centered, system-atic, and organized approach to accessing appropriate support services for individuals within the school system with exceptionalities.

Every parent of a child with special needs within the school system has had mo-ments of frustration and questions – oh, so many questions – about many aspects of the process.• WhatcanIdoifIdon’tagreewithmychild’sclassplacementinaself-contained

ASD (Autism Spectrum Disorder) class?• Cantheschoolrepeatedlysuspendmy14-year-oldsonwithAspergerSyndrome?• Our20-year-olddaughterhasautismandisabouttoleavethesecondarysetting.

Does the school have to implement a transition plan?• HowdowegetourinputontheIndividualEducationPlan(IEP)?

Although the Ontario Ministry of Education indicates in the Shared Solutions document that “All parents have the right to advocate for their child” (p. 27), parents often do not feel empowered to do so. Further, the laws governing special education in the province of Ontario clearly indicate that children with special needs have the right to an appropriate education, but navigating the education system is challenging for even the most experienced.

by Pat O’Connor

feature EDUCATION


As the parent of a child with excep-tionalities such as ASD, you are the most knowledgeable person on the planet about your child. Really, you have expert status. You know their strengths, needs, likes and dislikes, personality characteris-tics, and you love them from the bottom of your heart! You have the greatest po-tential to advance their cause and be their advocate in the education system. The journey of becoming an effective edu-cational advocate involves acquiring in-formation, organizing a process, relaying information in a clear and concise man-ner and monitoring outcomes. Here are a few tips to assist you as you undertake this challenging but meaningful venture.

Know your child’s disability ASD is a complex disorder that requires support in many areas of functioning. I’m not saying you must know everything, but it is important to understand how the defining characteristics – communica-tion, social skills and behaviour (self-reg-ulation) affect your child. Sharing your understanding of your child’s sensory needs and levels/causes of anxiety are es-sential for success in the school setting.

Identification and IEP development: It is really important to have your child formally identified through the IPRC (Identification, Placement, Review Committee) process and that an IEP (Individual Education Plan) is devel-oped. The IEP becomes the template for the student and the teacher program.

It represents how your child’s program will differ from the regular program. Principals are legally required to ensure that parents are consulted in the devel-opment of IEPs and consultation must occur on any significant changes prior to implementation.

Know your rights To ensure that your child accesses the services and supports that they require it is essential to know your rights. The Education Act as well as other policies and regulations assist in this regard. At the end of this article there are a few doc-uments to track down on the Ministry of Education website.

Know the jargon “There will be an SNC to discuss the IEP after we have the IPRC to identify your child as having an exceptionality - ASD.” Yikes, am I in a new world with an unknown language? There are many acro-nyms to learn but once you learn to speak the language, life gets easier.

Understand the school board’s process In every large bureaucracy there is a chain of command and a series of people with a variety of roles and responsibili-ties. The first order of command is the teacher and/or special education teacher; the principal is the next link, followed by the area and special education superin-tendent. If the issue remains unresolved, the Ministry of Education is your final resting place. School boards will be very

Pat O’Connor’s primary focus is on consulta-tion; training, program development and advo-cacy for young adults with Asperger Syndrome transitioning to the work world and post-secondary through her company Integrated Autism Consulting. She can be reached at [email protected].

clear that this chain must be followed and do not look kindly upon the person trying to jump the queue.

Constructive communication The key to success: Be nice. If you are feeling really cranky, wait until later to put it in writing – at least the letter that you send to school board personnel. Be clear, concise and specific and request responses within timelines. Try to keep emotions in check. This is often easier said than done since it’s your baby and it’s their rights that we are talking about. Remember there are many great educa-tors in the system that will attempt to solve issues as they arise.

Document, document, document!Document all contacts with the school, not only formal letters but e-mails, phone calls, and meeting discussions which are often documented in SNC (Special Needs Committee) meetings. This doc-umented history clearly identifies issues and outcomes. Your child’s school career is lengthy and if your memory is any-thing like mine – it fades over time.

Persevere Rome wasn’t built in a day and the same rule applies to special education planning and implementation. Follow-up on the implementation of discussed outcomes is essential. Schools are busy places with competing priorities. They may need reminders.

Of course, not everyone has the time, energy or inclination to take on the advocacy role independently. There any many excellent resources to guide and assist. Autism Ontario is in the process of developing an Advocacy Associates Network to support families throughout the province.

Ministry of Educationhttp://www.edu.gov.on.ca Special Education: Generalhttp://www.edu.gov.on.ca/eng/general/elemsec/speced/speced.htmlIndividual Education Planshttp://www.edu.gov.on.ca/eng/general/elemsec/speced/iep/iep.htmlPolicy/Program Memorandum No. 140: Incorporating Methods of Applied Behaviour (ABA) into Programs for Students with Autism Spectum Disorders (ASD) http://www.edu.gov.on.ca/extra/eng/ppm/140.html

Helpful Resources



A Week of MagicAUTISM ONTARIO GOES TO DISNEY WORLD

by Shona Casola, Community Event Coordinator,Central East Region, Autism Ontario

AT A PARENT SUPPORT GROUP discussion of what fun Potential Programme events were, one parent made the off-handed suggestion, “Why can’t you plan an event where we all get to go on vacation?” Why not? The obvious destination for such a vacation – Disney World – the most magical place on earth. I began the process of determining if this idea was even possible. Disney staff provided helpful informa-tion about family accommodations, simplified check-in, express passes in line, private events on site, and organized transportation to and from the airport. We established a wonderful partnership with Marlin Travel in Thunder Bay, and their outstand-ing agent, Wendy Steppler, worked tirelessly on rooming lists, back and forth with Disney, Air Canada and West Jet to make our dream holiday a reality.

I posted a survey of interest on the Durham Chapter website. In a little over a month, I had more than 100 responses, not just from Durham Region alone, or




It was with sadness that the families boarded Disney’s Magical Express to head home on November 12.

Feedback from the trip has been overwhelming. Parents and children thoroughly enjoyed themselves and can’t wait to go again. A grandmother shared, “We did so many fun things together, we will put together a book of memories. He asked me if we could go back and I told him, maybe someday… he asked ‘this Saturday?’ I think he had a good time. We both did.”

A second survey of interest has been posted at www.autismontario.com/dur-ham. If you are interested in participat-ing in the next Autism Ontario group holiday, please share your thoughts with us here. The survey will be open until April 2012.

even Ontario, but from all over North America. Together with my colleagues, experienced Disney travelers, an out-standing travel agent, amazing people at Air Canada, our coordinator at Disney and almost a year to plan, we were able to offer some amazing accommodations to truly make the trip magical.

On November 5, 2011, 21 families set off for Pearson International Airport (many children were about to board an airplane for the first time in their life). I had arranged a group flight with Air Canada. To help manage anxiety from large crowds, lines and staff unfamiliar to autism, we arranged for a private check-in kiosk, an Air Canada escort through security and customs and priority board-ing on the plane. Prior to our depar-ture, I provided Air Canada, customs and security staff with a tip sheet about ASD and some general information to increase awareness. The flight was sur-prisingly smooth, the kids really enjoyed the personal TVs and many parents had thought ahead and packed snacks.

Most families stayed at Disney’s All Star Movie’s Resort – a Disney Value Resort hotel featuring giant icons that salute classic Disney films. Others opt-ed to stay at other Disney resorts or off property in a condo. The resort offered a cafeteria-style restaurant, two pools, and reliable transportation to the Disney theme parks.

On the first day, a private coach took families to the local Target store so they could pick up forgotten items and snacks their children would eat during the week. Many children on the spectrum are se-lective about their food and this went a long way to ease the parents’ minds and provide alternatives for children.

Families explored Disney at their leisure. While the trip was booked as a group holiday, it was not intended that

families would travel about together dur-ing their time there. Regardless of par-ticipation in group events, families knew how to get hold of me to work out any issues that came up.

On day three, we offered a pool par-ty at Disney’s All Star Movie’s Resort. On-site staff offered games, activities and prizes. We provided snacks and drinks. The party was strategically planned to offer families a break from the parks and a relaxed afternoon.

On the fifth evening, we had a pri-vate dessert party in Epcot where we could view the fireworks. It was defi-nitely a trip highlight. The kids loved be-ing together, creating their own desserts, and then watching the show. Many of the kids continued the bond they’d devel-oped at the airport and the pool party by sitting together during the fireworks and chatting all the way back to the resort.

Ben with Lightning McQueen



DEVELOPING A TOOL TO CLASSIFY THE EVERYDAY SOCIAL COMMUNICATION ABILITIES OF PRESCHOOL-AGED CHILDREN WITH ASD.

by Briano Di Rezze, Martha Cousins and Peter Rosenbaum, CanChild Centre for Childhood Disability Research, McMaster University

OUR TEAM OF RESEARCHERS based at McMaster University, including Briano Di Rezze (PhD Candidate at CanChild), Drs. Peter Rosenbaum (CanChild), Peter Szatmari (Offord Centre) and Lonnie Zwaigenbaum (U of Alberta and CanChild) have been awarded a three-year CIHR grant (September, 2011–August, 2014) to de-velop a tool to assess the social communication abilities of preschool-aged children with ASD. This tool is currently being referred to as the Autism Classification System of Functioning: Social Communication and ACSF: SC for short. You may have al-ready heard about this study through the Autism Ontario daily news feed or your local chapter.

Why are we doing this study? You are likely familiar with the various sub-categories of ASD, such as Aspergers Syndrome, autistic disorder, pervasive development disorder (PDD) and pervasive development disorder not otherwise specified (PDD NOS). Within and across these categories, children have a wide variety of functional abilities (what they can do) and limitations (what they struggle to do) related to their social communication. This makes it very difficult to talk about ASD as a single disorder.

Currently, people who care for children with ASD use assessments and manuals based on symptoms to categorize their type of ASD, which sometimes determines how severely a child is affected by ASD. This type of system may not be very accurate, nor is it used consistently in the field of ASD. We believe that a different method can be used to describe how a child is affected by ASD, based on a child’s functional ability (what he/she can do) related to a particular skill. Essentially, we hope to look at the bigger picture of what a child’s social communication looks like in their day-to-day life, rather than exclusively narrowing in on specific features such as eye contact or joint attention. Our decision to focus on functional abilities related to social com-munication is based on a survey study (soon to be published) that we conducted with clinicians, parents and educators who know preschool children with ASD.

Our lead investigator, Dr. Peter Rosenbaum, is a pioneer in the development of such functional classification systems for children with Cerebral Palsy (CP). His initial tool was developed about 15 years ago and was based on their gross motor function. It is called the Gross Motor Function Classification System (GMFCS), now used all over the world (http://motorgrowth.canchild.ca/en/GMFCS/resources/ GMFCS-ER.pdf). This work has informed related systems that have described other

Speaking Their Language



abilities of children with CP. These sys-tems for children and youth with CP have enabled healthcare providers to understand to what extent a child can function and how they are affected by their condition, and can use a common language to communicate these abilities. The functional classification system that we propose to develop will be modeled after this GMFCS work as it relates to ASD.

What do we hope to accomplish and how will it help preschool-aged children with ASD? Our research team proposes to develop a tool to categorize children who are di-agnosed with ASD based on their social communication function. This tool will in no way be used for diagnosing, nor will it replace any of the existing instruments used in the field of ASD. We expect that it will help to categorize children with ASD in different groups based on their levels of abilities. Specifically, we aim to create a system that will examine differ-ent levels of social and communication abilities in preschool children with ASD.

By grouping children together based on social “functional abilities,” we will be able to understand better the broad range of ASD and describe that range to parents. Healthcare providers will also use words that have similar mean-ing across the country. Another benefit is that we will be able to follow these children over time to see how their ASD

changes with age, and we will understand what their abilities are as they progress into adulthood. Finally, we will be able to see which children benefit from different treatments. Researchers testing different interventions will be able to apply their treatments to more functionally similar groups of children and understand better how these groups will respond. By using this type of system for children with CP, we have improved drastically how we un-derstand and treat this condition. ASD could be evaluated in this manner so that we may see these improvements in its classification, to provide the best health services to children with ASD and their families.

How will we do this?There are two phases to this project. We are currently in first stage of Phase 1 of this study which is focused on en-suring that the foundational content of the ACSF:SC is valid, meaning that it accurately describes social communica-tion function in children. We are con-ducting focus groups with the experts who know preschool-aged children with ASD, including parents, early childhood educators and clinicians. Each focus group is meeting three times between now and May, 2012. At the same time, current research and literature related to function and social communication for children with ASD are being reviewed. Information from both the focus groups and the literature we look at will help us

to create an initial draft of the ACSF:SC. This draft will then be further examined through something called a nominal group process, a type of focus group that aims to get the group to come to a con-sensus on specific details of the drafted tool. During this nominal group process, participants are able to provide feedback and discuss the content of the ACSF:SC. This feedback will be incorporated into a second draft of the ACSF:SC, to be prepared for Phase 2. Phase 2 will then involve a series of field tests to gather feedback from parents, educators and cli-nicians who will trial the tool with chil-dren that they know.

How to get involved? If you think you might be interested in participating in the second stage of Phase 1, the nominal group process, we will be recruiting about 30 parents, educators and clinicians to provide their feedback to a final draft in Toronto in May. Watch for our next recruitment flyer through Autism Ontario. If you would like more information please contact the ACSF:SC project coordinator and knowledge bro-ker, Martha Cousins at 905-525-9140 Ext. 27849 or [email protected] and you can check out the CanChild Centre for Childhood Disability Research web-site at http://www.canchild.ca.

Autismmatters is a publication of Autism Ontario. For $25, “Friends of Autism Ontario” can learn about autism all year round with a one-year subscription (4 issues). You’ll receive the most recent issue when you subscribe. Please provide full mailing information and a cheque payable to:

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Members of Autism Ontario automatically receive a copy. Visit our website: www.autismontario.com to view back issues of our magazine.

Autismmatters

The “go to” resource for parents and educators

feature RESOURCES


Book Review

Challenging the Myths of Autism: Unlock New Possibilities and Hopeby Jonathan Adlersonreviewed by Monica Richardson, Autism Ontario Board Past President, and Parent

MY SON MATTHEW is now almost 19 years old, and it’s been a while since I have picked up and read any books on autism. By now, I have many files full of articles, handwritten notes, specialist re-ports, a variety of reference books, and my own life’s experience to draw on, and these days my focus is on the transition to adulthood. But this book’s title caught my attention, so I picked it up. I am glad I did. It was an easy read (take that to mean mostly non-scientific and with words I could understand!) and it left me with a feeling of optimism, and that oth-ers in this world share the same sense of hope and “never give up attitude” that has guided us through the many stages of Matthew’s life.

Adlerson presents information that reinforces the need for parents, educa-tors, professionals and the public to look at our children with a new perspective – challenge what has been written that is negative and one-sided, embrace the dif-ferences in a new way, and see the poten-tial. Hurray!

In this book the author shares two decades of his own personal experiences of working with families in both Canada and the US, along with expert research and studies. It gives realistic and practi-cal approaches to treatment for individu-als with autism, and should be standard reading for all parents with newly diag-nosed children, as well as educators and professionals.

He talks about seven “myths” -> af-fection, rituals, socialization, evidence, IQ (I really enjoyed this chapter), the “five-year window” (again I found this refreshing – had I believed that learn-ing “stopped” after the five-year mark, Matthew would not be the young man he is today and is still learning), and imagi-nation. For each of these myths he starts with statements such as:

“Intervention should start before the age of three, and certainly by the age of four. After a certain point, you can still teach an autis-tic child certain things, ameliorate destruc-tive behaviours, but you’re not really going to change the developmental pathway they’re on.” (Dr. Deborah Fein, professor of psy-chology, University of Connecticut)

Adlerson proceeds to give real-life examples to challenge statements like this, provides references that both sup-port and oppose the myth, and ends the chapters with what the reader can do,

such as:• changeyourbeliefsaboutlearning• look for evidence that learning is

happening • believe that early intervention can in-

form lifelong learning• focusonotherevidence-basedfactorsfor

success• believethattimeisnottheenemy• changehowyoutalkaboutintervention• promotestoresthatdebunkthemyth

If I could sum up what I took away from this book it would be this – we all need to stay open to change, and never stop learning – even when you may think you know it all. I highly recommend this book.

Next on my reading list – Ten Things every Child with Autism Wishes you Knew. by Ellen Notbohm.

Challenging the Myths of Autism: Unlock New Possibilities and Hope, by Jonathan Adlerson, HarperCollins Publishing, 2011.



New Staff Intro

I AM EAGER to be taking on the role of Community Resource Manager with Autism Ontario. I am happy to be taking on a posi-tion that will utilize my skills as well as my passion to be a voice for children and adults who have Autism Spectrum Disorder.

I graduated from Georgian College in 2001, receiving my Hotel and Resort Oper-ations diploma. I have accumulated over 15 years experience in event planning, market-ing and operation management. In my past employment, my major responsibilities have included event planning, ensuring superior levels of customer service, human resourc-es, sales, administrative work, training staff and managing standards and procedures. The experience I have gained through these roles has helped me to develop strong in-terpersonal, organizational and multi-tasking skills.

I spent several years working for a small intimate resort in Muskoka that instilled in me superior levels of service that I carry with me always. I was on the management

Katherina Symes

Book Review

THERE ARE COUNTLESS numbers of children’s books which are meant to edu-cate young readers on real-life subjects and teach them practical skills, but there aren’t too many that effectively interest kids in the field of maps and navigation. One example of such a rarity is called Maps and Mapping for Canadian Kids, written by Laura Peetoom and Paul Heersink, which I recently read and am now going to review.

This book contains relatively detailed information and is ideal for kids ages 7-11, although I, at the age of 17, discovered some information which I wasn’t previously aware of. Not only does the book teach kids how to read maps, it teaches them about navigation, the history of maps, mapping technology, and how to make maps of one’s own. The text-to-picture ratio is ideal for its target age group, and the letters are fairly large, making it easy for young children to read. For almost all the information in the book, there is a picture to explain or provide an example of it. At the back of the book, you will find a glossary containing basic geography and mapping terms, as well as pictures of sliced oranges representing longitude and latitude. The only actual flaw I noticed is the odd spelling error.

Overall, this book is well organized and divided into different sections depending on the information provided in that part of the book. While it contains a lot more detail and information than the average children’s reference book, it can probably be read in an average of 30 minutes to an hour, though most kids would only have enough of an attention span to read a few pages at a time. The book is well-written to apply to modern maps and mapping technology, containing information about GPS navigation and internet mapping programs. So for once, kids may take an interest in a topic that is essential to everyone’s lives.

Maps and Mapping for Canadian Kidsby Laura Peetoom and Paul Heersinkreviewed by Daniel Myers

Available from www.scholastic.com.

Daniel Myers is 17 years old and is from Pickering, Ontario. He has been officially diagnosed with autism and unofficially with Asperger’s syndrome. He spends much of his spare time read-ing maps and looking up world facts. He plans to go to college and pursue a career as a travel agent. He dreams of travelling all over the world in his lifetime.



Ontario Loses a Hero

Lindsay Moir (1946 – 2012)

WE COULD HARDLY BELIEVE the words that came through on our phones, blackberries and computers. Lindsay Moir had died suddenly on January 10, 2012. No one is ever prepared for the death of any person we know and respect, but this news left many families simultaneously shocked and saddened. As soon as the word got around, messages came in from Ontario parents of students with ASD and also from professionals who knew him and his work through Comhnadh (Gaelic for assis-tance) Consulting. Facebook postings, blogs and e-mails carried many messages echo-ing words such as these:

“...I felt so sad not only for his family but the hundreds of families that look to him for guidance… So many of us have heard him speak and asked for his guidance and expertise… what a huge loss for all.”

“…He was a very special man... he went above and beyond to help our children with special needs and their families. He was a wealth of knowledge and travelled this province to make sure our kids got the best education they were entitled to. He was a great, great man. My condolences to Lindsay’s family. You helped my daughter and I more than you will know.”

“He has been an incredible support to the families in our area. And, I know, to many others as well.”

“…I never had the opportunity to meet him, but he was always in my back pocket if I found advocating for our child too difficult, I have always been expecting I would need his help when we move across into the high school system. I know he will be missed by all those who got to have him on their team.”

“…I have had the pleasure of learning from him and he had a way of making you believe that you could do anything – such a great support for advocacy and knowledge…”

As with any effective advocate, not everyone agreed with all his views, but no one questioned Lindsay Moir’s commitment to keeping the learning needs of the children in the forefront, or his passion for the sustained work of advocacy. He made the pro-cess of navigating the special education system in Ontario more understandable and he empowered parents to be their child’s most effective advocate. He helped parents to not be afraid to insist on the best possible education for their child, and much of his work involved students with ASD.

Autism Ontario is grateful to Lindsay Moir for his dedication to the field of au-tism, his listening ear, his practical and helpful ideas along with his commitment to families and their children. Lindsay made a positive difference in the lives of many people and his passing has left a huge void in Ontario. He will be sorely missed.

Lindsay Moir is survived by his wife, Elizabeth, three adult children and their partners and grandchildren, along with many extended family members and friends.

by Margaret Spoelstra

team for Pillar & Post Inn Spa and Confer-ence Centre in Niagara-on-the- Lake and with a Royal Host REIT property in Barrie, ON. I also had a great opportunity to travel for TDL (Tim Hortons) opening new res-taurants and training new staff.

Most recently, I worked for Jarlette Health Services as a Customer Service Co-ordinator. I was responsible for the sales and marketing of their retirement home in Bar-rie.

In my spare time I enjoy being with my husband and two young children. We enjoy swimming, heading off to the park and being in the great outdoors.

I have volunteered with Prevention of Senior Abuse Network Simcoe County, as a Barrie Block Parent and most recently with a not-for-profit organization that helps families connect with photographers to have their special moments captured on film.

I am happy to be part of the Autism On-tario team.



AUTISM ONTARIO – Sudbury and District Chapter is very happy and proud of our volunteers for hosting two movie mornings and a bowling night. The Rainbow Cinemas held our Cars 2 movie morning for the entire autism community and all vol-unteers and families from our Summer Run/Walk. Each individual under 18 received a free gift pack, balloon, snacks and drinks. Our second movie morning was held at the Famous Players theatre during Christmas holidays showing a free Alvin and the Chipmunks movie to the community. We also held a bowling night in the fall for all those who could attend with bowling, pizza and a raffle where each person won prizes ranging from books and toys to manuals and novels. It was a great turnout.

In October, our chapter, with the partnership of Child Care Resources (CCR) held the second of two, two-day workshops “Sexuality and Emotion Management in High Functioning Autism and Asperger’s Syndrome,” given by Dr. Isabelle Hénault M.A., Ph.D. Clinical Psychologist. Forty Sudbury and area professionals from school boards, hospitals and CCR walked away with a world-leading education with many praises from those who attended. The workshop was sponsored by Xstrata Nickel.

The Sudbury and District Chapter has opened an office and will continue to grow and provide educational and social events including their third annual World Autism Awareness Day media campaign and dinner on April 2, 2012. Lastly, we are now in the middle of our coin drive with LCBO, collecting all coins from January’s boxes. We had a wonderful fall and winter and are looking forward to the 2012 year.

On the Road with the Sudbury and District Chapterby Jenne Wilson

Cars 2 Movie Morning cake.

Photo credit: Michael Gauthier



The York Region Chapter launched Au-tism Awareness Month with a Family Corn Roast at Willowgrove, while Thunder Bay and District held their Curtis Easton Fundraiser for Autism and Pampered Chef Fundraiser. Wellington, Sarnia Lamb-ton, Durham Region, and Niagara Region Chapters went into local malls, sporting events and fairs to educate their communities. Sarnia Lambton and Sault Ste. Marie Chapters chose to highlight the month by showing and discussing the award-winning film, Temple Grandin. Thank you to everyone who planned, participated, volunteered and donated their time, effort and resources.

In Your Corner

THIS IS YOUR SPACE TO SHARE CHAPTER ACTIVITIES, GENERATE IDEAS AND FIND WAYS TO FILL GAPS LOCALLY

by Erin Roza, Chapter Development Coordinator andKatherine Symes, Community Resource Manager

Send your Chapter news to [email protected].

THE CHANGE OF THE SEASON from summer to fall brought us many great things. Among them, a brand new school year, the emergence of Autism Ontario’s Potential Programme, National Autism Awareness Month, and even more fantastic events put on by Autism Ontario chapters.

Thank you to Thunder Bay and Dis-trict Chapter for their Transitions Program, as well as London for their workshop fo-cusing on school discipline. We hope that all families around the province had a success-ful re-entry into school.

We excitedly welcomed the Potential Programme this fall, a unique service from Autism Ontario designed to directly support all Ontario families, parents and children with Autism Spectrum Disorder (ASD). We’d like to thank the chapters for their ongoing support of the program and their great ideas. The Family Support Coordina-tors have been working diligently with fami-lies and community agencies in their regions, while the Community Event Coordinators have brought movie mornings, family swim-ming, bowling, outings, craft days, expert speakers and more, all across the province. If you have an idea for an event or speaker, be sure to speak with your local Community Event Coordinator.

As October was National Autism Awareness Month, Chapters worked hard to honour, celebrate and make others more aware of ASD. The Halton Chapter kicked off the month with their inspirational Stars Shine for Autism event, while Niagara Region Chapter lit up the Niagara Falls.

In addition to the above-mentioned ac-tivities, the fall housed many events that kept us both active and festive. Toronto Chap-ter held their annual Ride, Glide ‘N Stride in September, along with Huron Perth’s Walk for Autism, and London’s Ride and Stride. Ottawa and Halton Chapters con-tinued the fun in October with the first an-nual Ought to Walk for Autism, and Ride Together for Autism, respectively.

Chapters around the province held spooky and not-so-spooky events to cel-ebrate Halloween. Some chose to take the party outside, like the Durham Region Chapter who went to Knox Pumpkin Farm,

p Ought to Walk 01-04 – Autism Ontario – Ottawa Chapter hosted the first ‘Ought to Walk for Autism’ on Sunday, October 16, 2011 as one of its activities during Autism Awareness Month. The sun shone, the wind blew and the turnout was wonderful. Individuals, families and friends enjoyed walking and had a chance to connect with others – and raised awareness and $7,737.14 for the Chapter. Thank-you to everyone who participated and supported the Walk.

Photo Credit: Mimi Richard-Golding, Ottawa Chapter President.



Halton’s Fall Party at the Farm, and Kings-ton’s trip to the Pumpkin Patch. Peter-borough chose to go bowling, with their Halloween Bowling Social. Other chapters simply chose to eat, play, dance, trick and treat their way through Halloween, with family parties in London, Sarnia Lamb-ton, Windsor Essex and Hamilton Wentworth. York Region appealed to the masses with their “Not So Scary” Hal-loween Party, while Ottawa appealed to an older audience with their Teen/Adult Halloween Party.

Chapters kept the festive fun going right through to the end of the year with holi-day celebrations in all shapes and sizes. The Hamilton Wentworth Chapter hosted a number of events, among them Holiday Cookie Decorating, an Adult Drop-In Holi-day Party, and their hugely successful First Annual Stress-Free Holiday Shop for Chil-dren event. Niagara Region Chapter also hosted a Stress-Free Holiday Shop-ping event as well as Photos with Santa and Holiday Kids-in-the-Kitchen. Thunder Bay and District, Durham Region and York Chapters all smiled with Santa too at their Santa Photos events. Upper Canada Chapter brought their party to the lanes for their Bowling Christmas Party, while North Bay and Area laced up on the ice at their Holiday Skating Party. Simcoe County chose to bring their families to Drysdale Tree Farms for horse drawn sleigh rides, face painting, a visit from Santa and Mrs. Claus and more. Many animals, edibles, inflatables, and even a light show accompanied holiday parties across the province in London, To-ronto, Halton, Wellington, Windsor Essex, Kingston, Ottawa and Sarnia Lambton. A special mention goes out to North Bay and Area Chapter and their wonderful adaptation of A Charlie Brown Christmas.

We hope everyone celebrated a safe holiday season and we cannot wait to see what 2012 has in store. Your continued hard work is a gift to us all. If you have some-thing to include in the next Chapter Corner, please do not hesitate to send it in.

Top left: Ty Merrell as Super-man at York Region’s “Not So Scary” Halloween Party.

Top right: Alex and Tina Rog-ers, dressed as the Scream villain and a witch, enjoying York Region Chapter’s “Not So Scary” Halloween Party. Photo Credit: Sarah Dougald, York Re-gion Chapter Manager

Middle: North Bay and Area Chapter presents A Charlie Brown Christmas for family and friends.

Photo credit: Lisa Giroux

Bottom: The Veliz Family pose with Santa, Mrs. Claus and their helper at Toronto Chapter’s Annual Children’s Christmas Party.

Photo credit: Pierre Isogai



Brian, Stephen and Nathan Volpato Erin Nightingale, Paul Neff and Aidan Neff

Tyler, Hannah and Jaymie Stephenson Derby and Molly McNulty

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Christmas at Drysdale’s Tree Farm by Tanya Stephenson

ON DECEMBER 17, 2011 more than 200 Autism Ontario – Simcoe County mem-bers gathered at Drysdale’s Tree Farm to celebrate Christmas. It has become the “not to be missed” event for the third year in a row. Guests were able to cut down their perfect Christmas tree, go on a dog sled, ride a train through the winter wonderland, watch a chainsaw carver create masterpieces, and see a magic show.

Guests enjoyed a fabulous, hearty lunch in the private dining atrium before get-ting their annual Christmas picture taken. They also had the opportunity to add sea-sonal sparkle and shine by having their faces painted. Then it was back outside to take a leisurely horse-drawn wagon ride through the countryside, while the sounds of sleigh bells and horses hooves on snow filled the air. We can’t wait to go again next year.

Families in your community need your help

You can help those families today. Please, consider joining The Champions’ Circle, our dedicated group of monthly donors. You can make a monthly gift in the amount of your choice from your Visa or MasterCard. You save paper and stamps, and you get one consolidated tax receipt at the end of the year, but perhaps most importantly, you make a difference in your community.

There are three ways to become a Champion today!• Contact Len Milley at 416-

246-9592 Ext. 241, or [email protected] to join The Champions’ Circle

• Donate online at www.autis-montario.com (click on the Do-nate button)

• Mail your cheque, payable to Autism Ontario, to 1179 Street

West, Suite 004, Toron-to, ON M6K 3C5

Thank you for your generosity, and for helping us to help others

see the potential!

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Stages of Autism:Adolescence & Beyond

4th BIENNIAL CONFERENCE

Stages of Autism:

4 t h CON F E R E N C EB I E N N I A L

Hamilton

Adolescence & Beyond

Dr. Isabelle HenaultCarol Latimer/Lea Pollard -Bill 77 and DSODr. Elizabeth KelleySibling Panel on AgingWoodview Manor - Adult Services Model

With more to come

Dr. Peter Szatmari

SAVE THE DATESApril 2nd & 3rd, 2012

Dr. Liz Laugeson - UCLAPresenting the PEERSsocial skills model

Dr. Kevin StoddartThe Redpath Centre

Dr. Stoddart will be partof a Justice system panelas well as presenting onThe Asperger Spectrum

Presenting “DSM-5: Two steps forward, One step back?”

Celeste CarterTEACCH - UNC Chapel Hill“Using Video Modeling andStructured Teaching to DevelopLife Skills” and “The Top Ten Things Every Adolescent Needsto Learn in Order to be Successfulas an Adult”

www.woodview.ca for Conference updates and registration information

Celebrate World Autism Awareness Day on April 2nd with our special Evening Guest Speaker

John Elder Robison

Author of two books: “Look Me in theEye” and “Be Di�erent”, John o�ersa witty, highly personal andinsightful perspective to living withAsperger Syndrome.

A book signing will follow hispresentation.

Keynote Speakers

Special Presentations by:1 Summer’s LaneHamilton, Ontario

Canada

Hamilton Convention Centre

Informative speakers and Topics:

Stages of Autism:


Hamilton



With more to come

Dr. Peter Szatmari









John Elder Robison



Keynote Speakers


Canada



Stages of Autism:


Hamilton



With more to come

Dr. Peter Szatmari









John Elder Robison



Keynote Speakers


Canada



Special Closing Session:Dr. David Nicholas - Advancing Vocational Outcomes in ASDInformative Speakers and Topics:Dr. Isabelle Henault – SexualityLea Pollard - Bill 77 and DSODr. Elizabeth Kelley – BullyingSibling Panel on AgingWoodview Manor - Adult Services ModelLife skills teaching modelsJustice System PanelTransition to Post Secondary

April 2-3, 2012Hamilton Convention Centre1 Summer’s LaneHamilton, Ontario, Canada

Register now!www.woodview.caSpecial Early Bird rates until February 29.

Keynote Speakers

Celebrate World Autism Awareness Day on April 2 with our special Evening Guest Speaker

John Elder RobisonAuthor of two books:Look Me in the Eyeand Be Different.John offers a witty, highly personal and insightful perspective into living with Asperger Syndrome.

A book signing will follow his presentation

Dr. Kevin Stoddart,The Redpath Centre

will present a two-part session on “The Asperger Spectrum” including a panel of adults diagnosed late in life

Celeste CarterTEACCH-UNC Chapel Hill

“Using Video Modeling and Structured Teaching to Develop Life Skills” and “The Top Ten Things Every Adolescent Needs to Learn in Order to be Successful as an Adult.”

HAS YOUR ADDRESS CHANGED?Send your old mailing label and your new address to: Autism Ontario, at the address below.PUBLICATIONS MAIL AGREEMENT # 40910519CUSTOMER # 1012283RETURN UNDELIVERABLE CANADIAN ADDRESSES TO:

Autismontario

1179 King Street West, Suite 004Toronto, ON M6K 3C5

Camps on TRACKS: Creating meaningful social interactions for children with ASD and their peers

Documents

Transcript of Camps on TRACKS: Creating meaningful social interactions for children with ASD and their peers