Autism
WINTER 2008
2008 volume
volume 55 •• number
number 11
WINTER
PUBLICATION OF
OF AUTISM
AUTISM ONTARIO
ONTARIO
AA PUBLICATION
MATTERS
PPM 140
What does it mean for you?
Annual
Education
Issue
table OF CONTENTS
What’s Inside
OUR WINTER 2008 ISSUE
Board of Directors
Leslie Broun, Jane Burke-Robertson, Lynda Clayton, Claudio
Del Duca (Past President), Linda Gibson, Dr. Cynthia
Goldfarb, Jane Houlden, Deborah Kitchen (President), Leah
Myers (Chair of Presidents’ Council), Ginny Pearce, Monica
Richardson, Michael Spicer
features
Local Chapters
To find contact information for your local Autism Ontario
chapter, visit www.autismontario.com.
Good Days and Bad Days: Seven
Strategies to Cope, by Jene Aviram
p. 14
1179A King Street West, Suite 004
Toronto, ON M6K 3C5
Phone: 416-246-9592
Fax: 416-246-9417
[email protected]
All I Want for Christmas, by Laurie Pearce
8
Creating Possibilities for Autism Ontario;s Camp Programs, by
Karyn Dumble
Ministry of Education Initiatives: And What They Mean for You, by
Laurie Pearce
10
12
13
13
Autism: A Mother’s Story, by Marion Pusey
17
18
Sounds of Hope, by Michael Spicer
20
22
22
Autism’s Marathon Man, by Rick Ludkin
Fundraising Gala, an excerpt from a speech by Grace Commisso
TVO Shines Spotlight on Autism, by Angela Garde
Provincial Training Initiatives: Building Capacity in Ontario, by
Marilen Miguel
Political Activities: What Charities Can and Cannot Do (Part 4),
by Esther S. J. Oh and Terrance C. Carter
A Description of Asperger Syndrome, by Dr. Tony Attwood
In Your Corner – Chapter Activities, by Karyn Dumble
Autism Ontario is a registered charitable non-profit organization
(#11924 8789 RR0001).
OUR VISION: Acceptance and opportunities for all individuals 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 welcomes 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., info@gepmgroup,com. Inclusions of information not directly related to Autism Ontario are for information
only and individuals, events, therapies, treatments, etc., are not
necessarily endorsed by Autism Ontario.
cover
Watch the media for Together for Autism’s
new public service announcements. See article on p. 3.
Editing, design and printing services, GEPM Group Inc. • www.gepmgroup.com
Autism Ontario
4
5
message EXECUTIVE DIRECTOR
Raising the public profile of
Together for Autism
Thank you Sharpe Blackmore Euro RSGC!
by Margaret Spoelstra, Executive Director
Since its inception more than a decade ago, Sharpe Blackmore has always
supported charitable initiatives. When
Executive Creative Director Paul McClimond learned about Together for
Autism from Ron Harrison, a long-time
social acquaintance, Paul asked for more
information. Watching the videos and
reading the literature that Ron provided
was a moving experience for everyone at
the agency. Agreeing to offer help to Together for Autism was an easy decision.
Developing the work and seeing it to
fruition, in partnership with the staff and
volunteers at Autism Ontario, proved a
uniquely rewarding experience. The PSA
development team included:
Paul McClimond, V.P. Creative Director
– Sharpe Blackmore Euro RSCG
Peter Sellers, Senior Writer – Sharpe
Blackmore Euro RSCG
Rea Kelly, Senior Producer – Sharpe Blackmore Euro RSCG
Francesca DeRose, Senior Producer –
Sharpe Blackmore Euro RSCG
Thomas Rickert, Executive Producer
– Code Film
Michael Andringa, Director/Cameraman
Erica Parks, Production House Producer
– Code Film
Michael Zweig, Music – Candy Sound
Renato Sorbara, Editor
Elane Ford, Colour transfer – Notch
Steve Hurej, Audio Mix – Producers’
Choice
Shannon Barnett, Voice over talent
Julie Newton, Dubbing and distribution Advantage
p L to R: Ron Harrison, Together for Autism, and Deborah Kitchen, Autism Ontario Board President with Paul McClimond, VP, Executive Creative Director at Sharpe Blackmore Euro RSGC at
a special “thank you” presentation to Paul on November 24 in Toronto. Paul created our “Happiest Day” PSA for Autism Ontario’s Together for Autism Campaign.
WINTER 2008
AutismMATTERS feature ARTICLE
“All I want for Christmas...”
Making your list and checking it twice might
involve a reconsideration of what you give to a
child with ASD
by Laurie Pearce
Let’s face it, our kids have
enough of a challenge just
getting through the day – must
everything in their lives be
purposeful?
AutismMATTERS
WINTER 2008
A while back I read a sad little article entitled, “Holiday Gift-Giving Ideas for Children with ASD” from The Gray Center Social Understanding Network, ironically.
Why sad, for an article from a credible source, sounding so eminently sensible
and apparently reasonable? The article suggested that when gift shopping or making
suggestions to others about gifts for your child, the main thing you should think about
is, well, you. It said you should take into account your short-term and long-term goals
for your child, that you be sure your child will want the item for a long time, that you
evaluate the potential gift in terms of whether it promotes social development, if it’s
consistent with your “values,” and its cost. Some of these are common sense for any
child – many of us won’t purchase a fake gun, for example, or revealing clothes for our
teenage daughter, and surely all of us are concerned with over-priced and cheaplymade (if not downright hazardous) toys. But hey, we’re not talking about therapy or
school supplies, we’re talking about gifts. In my view, gifts should be based on what
the loved one wants, covets, desires, longs for – not just what is good for them. It’s like
saying, “Oh, Bob would love those golf clubs, but really, he plays golf way too much,
let’s get him a nice book,” or “Mary’s china doll collection is a little out of control,
so she really doesn’t need that newest one,” or “Of course Catherine enjoys nice bath
supplies, but she really should get out of the house more often, so I think I’ll get her
some jogging shoes.”
Let’s face it, our kids have enough of a challenge just getting through the day
– must everything in their lives be purposeful? The article talks about the parents’ objectives and plans – what about what the child wants? Will I regret buying the “That
Was Easy” button? You bet I will, a dozen times a day – but he’ll love it. Will I think
twice about my suggestion that attaching a bottle of Coke to his gifts will increase his
interest? Sure, when I’m scraping him off the ceiling that night – but oh, the sight of
his face when he sees those packages. Does he need yet another box of play food? Not
at all, but he longs for it. Would I think it’s fun to get a package of gum as a gift? Not
really, but it’s not my gift to receive; it’s my gift to give.
Of course I’m not talking about giving someone something dangerous, or wildly
inappropriate (my son wants an air hockey game that would require us to move to a
larger house to install, so that won’t make it). And I recognize that my experience is
limited to one child in a particular place on a very broad spectrum. But still I have
to wonder if sometimes in our efforts to help our children we forget, occasionally, to
honour and respect who they actually are.
And what about extended family? I want them to have the pleasure of his pleasure, and that means buying him something that might not be what I want him to
have, or even what someone else might think of as a gift. I want him to hear, when
he asks (as he inevitably asks) throughout the year “where did we get this?” that the
much-loved, age-inappropriate, noisy, goofy and ultimately pointless item came from
someone who loves him just the way he is. 
feature EDUCATION
EDUCATION
feature
Ministry of Education ASD Initiatives
And What They Mean for You
PPM 140 — not a very creative name, is it, for
something to inspire such hope and discussion?
by Laurie Pearce
This Policy/Program Memorandum
(PPM) from the Ministry of Education
was the subject of several presentations
at the recent Autism Ontario President’s
Council and SEAC Training, and this
article is one person’s view: except where
information is quoted directly from the
PPM, this is just what I heard and how I
interpreted it. In other words, there’s no
use shaking this article in front of your
principal and saying “but Laurie says...”
About the PPM
First, what is a PPM? A PPM is a document created by the Ministry of Education that sets out directions for individual
school boards in the province. Apparently PPM 140, “Incorporating Methods of Applied Behaviour Analysis (ABA)
into Programs for Students with Autism
Spectrum Disorders (ASD),” is the first
PPM that directs not just what the school
board is to do or provide, but gives spe-
cifics on how — the teaching approaches
to be used. Read and print the sevenpage PPM for yourself: go to www.autismontario.com and click on the link on
the home page.
The PPM is based on the recommendations from the Minister’s Reference Group on ASD, which included an
assortment of members including representatives from Autism Ontario. It sets
out two requirements, described below.
First Requirement of PPM
The first requirement says “School boards
must offer students with ASD special
education programs and services including, where appropriate, special education
programs using ABA methods.” Note the
“must” — this is the strongest statement
a PPM can make. Note also the “where
appropriate” — this was something the
reference group wanted to include, recognizing that ABA methods are not appropriate or desirable for every student.
WINTER 2008
AutismMATTERS feature EDUCATION
It is not intended as a loophole for boards
to refuse to offer programs based on their
belief that it is not appropriate, although
that won’t stop some boards from using it that way. If you are told that these
methods are not appropriate, you should
ask for a justification. Then you’ll be in a
better position to respond.
The PPM talks about “programs,”
but the rest of the prose talks about
teaching strategies in a more general
way: nothing in the PPM indicates that
school boards need to establish separate
ABA-based programs that approximate
therapy or offer specialized environments.
Important notes to
keep in mind
• As speaker after speaker reminded
us, schools boards are autonomous
organizations, and there are limits on
what the Ministry can require them
to do. Interpreting and applying PPM
140, or any PPM, is very much the
responsibility of the individual board.
• The PPM has nothing to do with the
provincial IBI program. It does not
mean that IBI therapists are to be included in the classroom, or that IBI
will be delivered at school. During the
provincial election campaign, Minister
Wynne made some sort of statement
about IBI in the schools, but until the
cabinet reconvenes, it is unclear what
she meant by that.
• The PPM deals with ABA as a teaching method/strategy that can be applied by educators in the classroom.
It has nothing to do with placement
— that is, it does not in any way indicate that students needing instruction based on ABA need to be in a
particular classroom environment. It
is intended as a way to support the
child’s school day, wherever that day
may be spent.
AutismMATTERS
WINTER 2008
In practical terms, this requirement
means that principals need to ensure an
IEP (Individual Education Plan) incorporates ABA teaching methods. If this
is done, the resources needed to provide
those teaching methods in the classroom
(typically handled through training for
the classroom staff — nothing in the
PPM requires school boards to hire specialized staff for those purposes) cannot
be denied. And we have been told that
considerable funds for this training have
been distributed to boards — however,
boards are not required to spend the
money for that purpose.
less emphasis to using it when teaching
academic skills. It talks about individualized programming, positive reinforcement (although negative reinforcement,
the removal of something from the environment, is equally, if not more, applicable in a school setting), data collection
and analysis, and generalization. It does
not talk explicitly about breaking tasks
into small components, which is typically
used in ABA. It fails to offer a definition
of “behaviour,” something that would be
enormously helpful in dealing with educational staff who think “not paying attention” is a behaviour.
Second Requirement of PPM
The second requirement is that “School
board staff must plan for the transition
between various activities and settings
involving students with ASD.” This
refers not just to transitions between
school settings, but also transitions during the school day. It says that community service professionals already working
with the child should be involved in such
planning.
The PPM also states that the implementation of these requirements will be
monitored, through the Minister’s Advisory Council on Special Education.
What the PPM Means for You
The PPM makes it possible for you to
insist that ABA strategies be included
in your child’s IEP: it does not make it
possible for you to insist that a boardcertified behaviour analyst or other
behavioural expert be involved in developing (or delivering) your child’s education. Before you approach your school
about the PPM, you should read the document for yourself so you’re aware of its
contents. You should also keep in mind
that your principal or classroom teacher
is not likely to be intimately aware of
PPM-140: for us in the ASD community
it might be a big deal, but for a school
administrator it’s just another in a long
list of Ministry requirements.
There’s a fine line I think we need
to walk — if we make the delivery of
ABA-based education sound too clinical,
teachers and administrators will resist it.
If we make it sound like just a common
sense way of teaching, teachers and administrators will dismiss it, or claim to do
it already.
If nothing else, this PPM is a positive indication that the Ministry has a
committment to ASD which has led to
increased funding for training for school
staff. The PPM also promotes a muchneeded collaborative environment with
community partners. 
Collaboration Focus of PPM
The PPM makes several mentions of
school boards collaborating with “community personnel” (including therapists,
social workers, representatives of service
providers, and so on) and with parents.
It calls such collaboration “essential.” It
particularly refers to this collaboration
for the IEP, saying that principals “must”
ensure that such people participate in the
IEP process.
What the PPM Appears to Mean by
“ABA”
The PPM’s details about ABA are where
I personally have my greatest quibbles. It
promotes the use of ABA strategies primarily (although not exclusively) for behaviours such as staying on task, and gives
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Autism
C onnects
AutismConnects
Partners
Autism Ontario
•
A Virtual Community for Autism Stakeholders
Suppor ting:
• Individuals with ASDs
• Families
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• Support Agencies
• Family Doctors
• Speech-language Pathologists
• Occupational Therapists
• Physical Therapists
• Teachers
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Aspergers
Society of Ontario
•
Autism Society Canada
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Geneva Centre
for Autism
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Leading the Way Together
Kerry’s Place
Autism Services
Providing:
• Information about ASDs
• A Directory of Resources
• A Discussion Forum
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Visit www.autismresearch.ca today
or call toll free: 1-866-ASD-CARC
WINTER 2008
AutismMATTERS feature WORKING TOGETHER
Creating Possibilities For
Autism Ontario’s Camp
Programs
How a Volleyball Tournament Changed Lives
p Planning Weekend participants, L to R: Doug McCreary, Kathryn Everest, Dave Parkhill,
Heidi Penning, Susan McCreary, Cindi Buick and Karyn Dumble.
by Karyn Dumble
During late spring 2006, long-time Autism Ontario members Doug and Susan
McCreary met with key provincial office staff to discuss the creation of a fund
that would support summer camps for children with Autism Spectrum Disorder
(ASD). For a number of years, the McCrearys had been running a beach volleyball
tournament in Dufferin County that benefited the local chapter’s camp program.
By 2006 the tournament had grown to such an extent that its organizers found
themselves in a position to redirect the funds in a manner that would benefit kids
across Ontario. Thus, the Possibilities Fund was born.
A New Fund to Support Camp Programs
A committee was formed to support the Fund. The Possibilities Fund Committee
determined that the goal of the Fund would be to improve the camping experiences
and opportunities for children and youth with ASD. The Committee’s first task was
to undertake an audit and evaluation of Autism Ontario’s camping programs; its second task was to create the Camp Manual: A Guide to Organizing Autism Ontario Camp
Programs. These two projects meshed with Autism Ontario’s operational goal of assessing local camps and creating a base level of standards so that no matter which
camp a child attended, caregivers could expect the same base level of service and risk
management considerations.
AutismMATTERS
WINTER 2008
feature WORKING TOGETHER
that held a specific interest to them. The
day was a success and everyone involved
reported that they found the Camp Manual and the training day very valuable. It
was a good day and our chapter volunteers were left energized!
Parents Can Have Greater
Confidence in Our Camp Programs
Thanks to the Possibilities Fund, Autism
Ontario now has the baseline knowledge,
structures and risk management considerations necessary to operate its camp
programs.
Parents can feel comfortable and
have confidence that each Autism Ontario camp program has their child’s best
interests at heart not only through the
programming that is offered, but also
through the policies and procedures that
are held by all throughout the organization.
Resources from the Fund have also
made it possible for the people who plan
and run our camp programs to receive
training on how to use our camp orga-
nizing tools. This means that the key
knowledge output of this project, the
Camp Manual, will not gather dust on a
shelf; rather it has become the new standard for camping programs for people
with ASD in Ontario.
Camp Manual Training Day
On Sunday, October 21, 2007, representatives from each Autism Ontario camp
attended a full-day training session on
the new manual. Camp Consultant, Jen
Dundas, provided an orientation to the
contents of the Camp Manual and explained what is involved in implementing
the Manual’s standards.
Each participant also had the opportunity to discuss a section of the Manual
Possibilities Fund Committee
Planning Weekend
The Possibilities Fund Committee meets
face-to-face about once a year. Last
month Committee volunteers came together to set the Possibilities Fund’s objectives for the next couple of years. The
group had a jam-packed business meeting on Friday evening and worked all day
Saturday with a professional facilitator.
Goals for the Fund include supporting chapters to offset some of the costs
related to becoming compliant with
the new camp standards and to provide
funds for professional support of Autism
Ontario’s camp program. There are also
some new items planned, but we don’t
want to give up any surprises quite yet!
We’d like to say a very big thank you
to our fantastic facilitator, Kathryn Everest, for donating her time. 
For more information about the Camp Manual, please contact Karyn Dumble at karyn@
autismontario.com or 416-246-9592 x 226.
Top photo: Training Day participants in
Toronto.
Below: Planning Wall
Camp Manual: Key Content
• Ontario Camping Association
accreditation
• Building relationships with other
organizations
• What to include in a camper
information package
• Health and first aid policies
• Crisis management
• Staff screening tips
WINTER 2008
AutismMATTERS feature PERSONAL STORY
Autism
A Mother’s Story
Everything changed when Eric
was born.
p One of Eric’s intricate waterslide drawings
by Marion Pusey
p Eric, Algonquin College graduate, 2006.
Marion Pusey’s passion has been to help
other families so they won’t have to experience the same frustrations, nightmares and
heartaches that she had to go through. She
figured that she could best contribute to
the growing autsim community by helping
to provide visual resources, ie., Picture Card
Communication, and to be a supporting
friend to other families who have loved ones
with autism or other special needs. Visit her
website at www.picturecardcommunication.
com.
10 AutismMATTERS
WINTER 2008
Before Eric was born, I was a nurse in the Neonatal Intensive Care Unit at CHEO
– Children`s Hospital of Eastern Ontario. Eric was born with autism but was not diagnosed with “autism with severe global delays” until he was 5½. My nursing career
ended and Eric and Shaun (my sons) became my life’s work.
Eric spoke his first words (milk, juice) at around age 5. Up until around 8-9 years
of age he was echolailic, repeating everything he heard without showing any signs of
understanding what he had said. With almost no resources in Ottawa except the early
form of ABA/IBI, I had to go a lot on instinct. From the very beginning I kept talking
to Eric, describing everything we did and saw. I hoped that Eric was taking things in
even though he couldn`t talk – I found out years later that he was.
Eric was tactile defensive and had to learn about touch and textures. He had
to get used to different sounds, volume, intensity and sudden noises such as balloons popping and school bells. He also had Pica, i.e., he would put everything in his
mouth, but I had an extremely hard time feeding him. Doctors blamed the feeding
problem on autistic behaviours. As it turned out, we found out when he was 8 that his
stomach wasn’t formed properly and he required surgery to correct it. Eric did not
have the ability to let us know how he was feeling physically and emotionally.
Everything that Eric has learned had to be broken down into small steps. I took
him to Beavers to try to socialize him within the community. He was a pilot project
since none of the leaders knew anything about autism. Eric had few words and no
give-and-take conversation. On one Beaver outing, we went to a wave pool with a
big waterslide. Eric kept pulling at my leg and pointing to the waterslide. I did not
know that he could not “generalize,” i.e., understand that whatever happens to other
people coming off the waterslide will happen to him. After seeing his fascination as he
watched about 30 people going under water at the bottom of the slide, I decided that I
would double ride with him, holding him up as we reached the bottom. Well, we both
went under water. All the way home, he kept repeating two brand new words, “Not
fair! Not fair!” The next day, Eric started drawing waterslides. Waterslides has become one of his intense interests. He draws them to photographic detail and quality.
I decided to take Eric’s intense interest in waterslides and use it as a learning
tool to grow and expand on. One of Eric’s unusual savant skills (he has three – art,
math and music) is that he suddenly started playing the piano incredibly well, with
perfect pitch and ear. He had never had a lesson. He just sat down and played. He
played piano (and now plays music keyboards) so he could describe his feelings about
waterslides through music. Eric can sit down and play any music he hears and likes
feature PERSONAL STORY
within five minutes of hearing it. To this
day, Eric’s love of waterslides and amusement parks is so strong that he is taking
courses at college so he can design and
build them.
Six years ago, Eric could not understand or handle the world becoming more
complex. Schools believed in (forced) integration, i.e., “no choices” and that autistic children would become “normal” if
they were around normal children. The
schools never had enough money for a
teacher’s aide for Eric. In grades 6-7 he
had to share a teacher’s aide with six other children throughout the school. The
teachers did not have a clue about autism
and as a parent I was not allowed to go in
to help him. Teachers did not adapt lessons, i.e., more visuals, point form, giving
him copies of the notes, etc. Eric became
extremely aggressive, becoming a danger
to himself and everyone around him. He
would be sent home from school at least
once or twice a week because of “zero
violence tolerance.” The Children’s Aid
Society said that they would help us only
in an extreme crisis. That crisis happened
when we changed a routine slightly and
Eric attacked his younger brother. I
peeled Eric off his brother, then he continued attacking me. Shaun ran upstairs
and called 911 and Eric was taken to
CHEO. All that the doctors and Eric’s
neurologist would do is “drug him out”
and send him home, or I could take him
to the Robert Smart Center. After a week
at the Robert Smart Center, he spent six
weeks in the Cottage Program, part of
the Royal Ottawa Hospital, where they
experimented giving him different medications. The ROH staff knew nothing
about autism. During this whole nightmare, the Children’s Aid Society found
a placement for Eric with Bairn Croft
Residential Services. Bairn Croft staff
specialize in children and young adults
who are on the ASD spectrum, or who
have any communication, developmental and/or social delay or disorder. Care
and programming is done individually
to meet each child’s needs. The family
is considered a major need in the child’s
life and is included in the care plan. Eric
comes home to us on weekends and
holidays. Under Bairn Croft’s care and
guidance over the past six years, Eric has
flourished. He has learned skills of daily
living, now lives semi-independently, has
graduated from the Precision Machining
Technology Program at Algonquin College,* bowls with Special Olympics, has a
job, a girlfriend and many friends.
Eric is happy and very proud of
his achievements and we are extremely
proud of him. Through all this Eric has
become fully verbal. 
*Algonquin College makes whatever adaptions are necessary for their “special needs
students” to be successful. They have been
amazing with Eric.
WINTER 2008
AutismMATTERS 11
feature FUNDRAISING
FUNDRAISING
feature
Excerpted from a speech by Grace Commisso
This evening is evidence that there is strength in numbers. Autism is a worthy recipient of this support. I cannot speak as a mother
affected by autism, but as a mother I can speak from my heart about the hold children play in every parent’s life. Initially this
evening came together thanks to Kiran and remembering me when she chose autism to be our focus. My inspiration is the two
rambunctious boys who are disappointed they’re not here tonight. My boys have fulfilled my life and I hold precious every hug,
every mess and the numerous times they call out “Ma!” As parents we take for granted the simple actions or words of our children.
For parents of children with autism, the longing is much more. Their hope is that their child will follow through from one step
to the next; the anticipation that a new word will be said – especially one they long to hear. A mess is the least of these parents’
concerns. As long as their child is willing and able to show interest, the sky’s the limit. Parental love does not differ from one child
to another but the amount of attention and patience a child with autism requires is trying. Most of us are fortunate to have a good
night’s sleep to face the expected worries of our future. These parents wonder whether their child will have a good night’s rest or
what challenges morning will bring. My admiration of these parents is indescribable, my prayers are endless and my hope will be
evermore until these families have the help and support they require. I ask that you remember these families with autism and their
desperate need for support. Thank you for taking time out of your busy lives and all your generosity and support. Special thanks
to Le Jardin Special Event Centre, and
to Laurie Wiles of TD Canada Trust
and his group that are here tonight. And
thanks to our wonderful families who
have contributed by teaching us what
we’re capable of if our hearts are in the
right place. 
On October 12, 2007, Friends of Families
with Autism raised more than $26,000 for
Autism Ontario.
Left to right, Deborah Kitchen, Autism Ontario Board President; Kiran Kaushal and Grace
Commisso, Gala Co-Chairs; and Monica Richardson, Autism Ontario Vice-President.
12 AutismMATTERS
WINTER 2008
feature AUTISM AWARENESS
TVO Shines Spotlight on Autism
by Angela Garde
One Sunday night in November, TVO had a Superbowl of sorts. But it wasn’t a
football championship that galvanized the masses. Rather, it was a series of programs
on autism.
On November 18, TVO devoted the entire evening to autism with a unique TV/
Web event that ran almost four hours, and drew the biggest Sunday night audience
since the season began. Sundays on TVO are dedicated to raising awareness of social issues, and the autism event exemplified TVO’s ongoing commitment to special
needs communities in Ontario.
The big-ticket night kicked off with the documentary, The Autism Puzzle, exploring autism’s history, prevalence and treatment. Next was After Thomas, a drama
based on a true story of a couple struggling to care for their autistic child. Then
Your Voice, TVO’s online parenting show at www.tvoparents.com, took over with a
webcast discussion with experts. Supporting resources were also developed for www.
tvoparents.com, including articles, news stories, and videoclips and podcasts profiling
four families living with autism.
To capture as wide an audience as possible, TVO made After Thomas available
for viewing online across Canada, and welcomed still more visitors from all of North
America to www.tvoparents.com.
“Everyone at TVO had a hand in making this night happen,” says Nancy Chapelle, managing director, content and programming. “It all began earlier this year
when our program buyers found films they believed would resonate with our viewers
– and indeed they did. Many parents referenced the programs as a true and accurate
snapshot of their world, and welcomed the opportunity for others to gain a deeper
understanding of autism from various angles, on air and online.”
Cheryl Jackson, host of Your Voice, concurs. “TVO dedicated many people and
many hours to the topic, talking to families and experts, and reading the latest research. I actually knew very little about autism before beginning this project and I
was amazed by the scope of the problem and the difficulty families have finding help.
In fact, I think it was the heart-wrenching words of the families – who all told the
same story – that touched me most. I hope that our special made people more aware
of autism, and leads to greater support for families.”
On December 18 at 9:00 pm on TVO, watch for the film Magnificent 7, inspired
by the true-life experiences of a mother of seven kids, four of whom are autistic. And
on January 6, look for an encore of The Autism Puzzle and After Thomas at 8:00 and
9:00 pm respectively. You can review the special Your Voice webcast on autism and the
complete package of online resources anytime at www.tvoparents.com. 
For more information on TVO programs and
resources for parents, visit www.tvo.org and
www.tvoparents.com.
TVO is Ontario’s public educational media
organization and a trusted source of interactive educational content that informs, inspires,
and stimulates curiosity and thought. We
are committed to empowering people to be
engaged citizens of Ontario through educational media.
Provincial Training
Initiatives
Building Capacity in Ontario
by Marilen Miguel, Geneva Centre for
Autism
Geneva Centre for Autism has been given
a provincial mandate to train teachers’ assistants in publicly funded school boards
and school authorities and resource teachers and home visitors in the child care sector. Known as Teachers’ Assistant Training
Initiative and Child Care Support Program,
these initiatives are funded by the Ministry
of Education and the Ministry of Children
and Youth Services as part of their efforts to
enhance supports for individuals with ASD
in the province.
The training initiatives were started in
2006 and will continue through 2008. To
date, about 3,000 teachers’ assistants and
85 percent of resource teachers/consultants in Ontario have availed themselves of
the training delivered by Geneva Centre’s
Provincial Autism Resource Consultants
(PARC). Response to the training has been
very positive and shows the keen interest
and commitment of participants to be effective in their role in supporting a student or
a child with an ASD in a classroom or child
care setting. Geneva Centre for Autism has
also developed a dedicated E-learning site
for teachers’ assistants and resource teachers that they can access 24/7 to support
their learning needs.
The need for training of teaching staff
in the area of Autism Spectrum Disorder
(ASD) has long been identified by both educators and parents as critical for a successful
learning experience for a student with ASD.
A teacher’s assistant plays a critical role in
the effective implementation of a student’s
individual education plan. Likewise, resource
teachers/consultants play an important role
in ensuring the integration and inclusion of
children with ASD in a child care setting.
For more information about the Provincial Training Initiatives, E-Learning,
and other training opportunities, visit
www.autism.net. 
WINTER 2008
AutismMATTERS 13
feature ARTICLE
Good Days and Bad Days
Seven Strategies to Cope
by Jene Aviram
If you have a child with autism,
then you know that life is not like
a rollercoaster ride. It’s more like
hanging upside down on a triple
corkscrew that makes sudden and
surprising stops in shark infested
waters, beautiful rolling hills and
bustling cities.
This article is the copyrighted property of
2003-2007 Jene Aviram of Natural Learning
Concepts and is printed by permission of the
author. Visit her website at www.nlconcepts.
com.
14 AutismMATTERS
WINTER 2008
As a parent, a good day in the world of autism might look something like this:
Your daughter wakes up in the morning and happily gets dressed. She agreeably
puts on her shoes and instead of fixating on the entrance picture, she plays with her
sibling while she waits for the bus. Not only does she say good bye, she gives you
a quick wave as the bus pulls away. On her return from school her communication
notebook has glowing reports. She socialized with a friend, was compliant and did not
have a meltdown when free time was over. Like every day, you ask her what she did at
school. Not expecting a response, you almost fall on the floor when she tells you she
climbed on the monkey bars at recess.
And you think to yourself....
My child is going to be fine. Sure, she has her struggles but one day she will find
a niche for herself in this world. Look at her. She’s playing with her sibling and even
developing social interest with her peers. Her language has increased dramatically
and her communication progresses all the time. You can’t help but love her. I’m sure
she will always have close relationships in her life. Perhaps she’ll even get married.
She is so smart that I know she’ll find a job she enjoys. Okay, she might need some
job assistance but I’m sure it can be worked out. Even if she’s not completely independent, we’ll find the perfect setting where she will be happy, have a few friends and
get all the support she needs.
But what about the bad days? These are the days when things don’t run smoothly. The days where you want to curl up into a ball and hide in a safe place where no
one will find you.
As a parent, a bad day in the world of autism might look something like this:
feature ARTICLE
Your daughter wakes up and not only
does she refuse to get dressed, she refuses
to brush her teeth too. You calmly lead
her to the bathroom while she kicks,
screams and lashes out at everything in
her path. At breakfast she dumps her
juice into her cereal and then pushes her
bowl onto the floor, splattering food everywhere. When the bus arrives, she has
a screaming fit and you practically have
to drag her to the bus. On her return
from school, her communication notebook recounts a bad day with three major meltdowns. In addition, she refused
to write and kept throwing her pen on
the floor. To top it off, the teacher has
taken this opportunity to express her recent concerns over your daughter’s lack
of comprehension and social language.
You don’t get to finish reading the communication notes because your daughter
is hitting her sibling for no apparent reason and you have to intervene.
And you think to yourself...
How is my child ever going to cope
in this world? She can’t express her needs,
never mind have a conversation. She has
a meltdown over the smallest thing and
struggles to regain her composure. Her
language isn’t improving fast enough and
her communication skills are way behind.
She is light years behind her peers and
her behaviour is getting worse. What’s
going to happen to her when she grows
up? There is no way that she could be independent or hold down a job. Her comprehension simply isn’t good enough.
What if I’m not around? Who will take
care of her? How will she cope?
What do you do about these bad
days? Here are some strategies that will
help you get through.
1. Forgive yourself
When your child has autism, your life is
not simple. You’re allowed to have bad
days. You’re allowed to be depressed.
You’re allowed to feel angry. You’re
allowed to run out of patience. You
wouldn’t be human if you didn’t. Know
in your heart that this day does not determine your child’s future and say to yourself, “Today I will feel gloomy because I
choose to. Tomorrow is a new day.”
2. Shoe box reminders
Keep a shoe box and pack of index cards
in the kitchen or living room. Every time
your child does something that makes
you smile or if your child demonstrates
a new skill, make a quick note and drop
it in your shoe box. Your notes could
look something like this: “Sarah tried
green beans” 9/23/07, and “Sarah behaved beautifully when she got her hair
cut today” 9/30/07, and “Sarah made me
laugh. I told her I’m so hungry I could eat
a horse and she started to cry because she
didn’t want horse for dinner” 10/4/07.
When a bad day hits, sit down with a cup
of coffee and read all the notes in your
box. You will laugh, you will cry and I
guarantee you will feel a lot better!
3. Read our articles
I write for you. Every article is written to
help you on your journey with autism. I
don’t need to explain the happiness and
frustrations of caring for those on the autism spectrum. You live it! You rejoice in
the victories and shed tears with the challenges. When life looks bleak, these articles serve to cheer you up. They remind
you that there is a bright side to autism.
They help your family and friends understand what it means to have autism. If
you’re having a bad day, remember that
your child is exactly the same person today as on the glorious days when life is
wonderful.
4. Change your perspective
People with autism are not out to make
your life difficult. They’re struggling to
cope in a very confusing world. We can’t
even begin to comprehend the challenges
of this population. It’s wonderful when a
typical child concentrates in class but it’s
nowhere near the achievement of when
a child with autism concentrates in class.
It takes at least twice the amount of effort for the spectrum child who should
be applauded and appreciated. Sometimes when a child is learning a new
skill, it requires so much energy they just
“can’t keep it together” for the rest of the
day. Increasing the use of visual or written schedules and giving ample warning
before transitions will help the child feel
more organized. The child could also
be struggling with an event that’s taken
place at school or home. If your child is
able to express herself, probe as much as
you can. If your child’s behaviour doesn’t
improve within a few days, call the school
staff or the parents and work together on
helping the child.
Because Autism Matters...
Autism Matters 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). The most recent issue will be sent
to you when you subscribe. Please provide full mailing information and a cheque made payable to:
Autismontario
1179A King St. W., Suite 004
Toronto, ON M6K 3C5
Members of Autism Ontario automatically receive a copy. Visit our website: www.autismontario.com to view back issues of
our magazine.
WINTER 2008
AutismMATTERS 15
feature ARTICLE
5. Take a break
In order to recharge your batteries, you
need to take a break. Many people say,
“How could I possibly take a break? Nobody else can take care of my child!” My
answer to this is, “Treat it like an emergency.” You would have to take care of
the emergency and leave somebody else
to take care of your child. This could be
your family, your friend or a babysitter
and while they might not do as good a
job, I’m sure your child will get through
it.
Let’s take a minute to define a break.
A break does not mean doing all your
regular chores, doing homework with
your child, making dinner, cleaning up,
bathing your child and putting your child
to bed. By this time, you’re totally exhausted but you take a “break” by meeting a friend for coffee. No, a break means
abstaining from your regular chores! It
means going out of your house and letting somebody else take care of the rest.
Think about it for a second. What is really going to happen if your child doesn’t
eat a balanced meal one night? Or
watches too many videos? Or doesn’t do
homework? It’s not going to affect your
child’s final outcome, but it’s going to do
wonders for your spirit. By taking care
of yourself you teach your children to do
the same. So pick up the phone and call
your family, friends or a babysitter!
16 AutismMATTERS
WINTER 2008
6. Advocating for your child
There is no doubt about it; you are your
child’s best advocate. When you are feeling optimistic, you will root for your
child all the way. You know what your
child needs and you ask for it. However,
if you are feeling doubtful, you will wonder if others might be correct in their
assumptions about your child. This can
affect your attitude and your decisions.
If you’re having a few bad days and have
any meetings regarding your child, do
whatever you can to reschedule them.
These meetings include meetings with
school teachers and staff, meetings to
discuss your child’s IEP and meetings
regarding your child’s therapy program.
If you are unable to reschedule the meetings, speak less at the meetings than you
typically would and ask for a few days to
think about any recommendations that
come up.
7. Venting victory
When we’re upset about something, we
like to tell someone. We call our friends
and our family and we vent. We “blab” it
all out, knowing they’ll listen and understand. Because our loved ones care, they
want to make us feel better. So what do
they do? They commiserate. They tell us
we’re right. They sympathize. They empathize. It’s one thing if you’re venting
about your boss, but quite another when
you’re venting about your child. Although
it’s done with the best of intentions, when
your friend sympathizes that your child
isn’t learning fast enough, it backfires,
leaving you feeling 10 times worse. Now,
I’m not suggesting that you don’t vent.
I’m suggesting that you “manage” your
vent. Let everyone know ahead of time
that if you call to vent about your anxiety
regarding your child, they should listen
to your woes. It’s totally okay for them to
sympathize that you’re having a bad day
and feeling down. We all have our days.
However, ask them to remind you of all
the good points about your child. Qualities and skills they’ve observed or things
you’ve pointed out in the past. Let them
tell you again and again if necessary and
point out all those things your child does
that brings a smile to your face. The trick
is to inform people ahead of time. When
you’re having a good day (hopefully today) pick up the phone and let everyone
know how much they will help you by
doing this. I promise you, they’ll be glad
to help and you will feel a lot better on
your down days.
Raising a child with autism is not an
easy task. Take comfort that you are not
alone. There are many who share your
challenges and complexities of life. I
commend you! I salute you! You are doing a phenomenal job! 
feature WORKING TOGETHER
Sounds of Hope
Inspired by a family connection, a 17-year-old
burlington student has developed a teaching
method that allows children with autism to
learn through music.
by Michael Spicer
Kayla Cornale has always been interested in science. Her grade 8 science
teacher inspired her to pursue this interest, and the result is a teaching system
designed to help children with Autism
Spectrum Disorder (ASD) overcome
their communication and social development challenges by associating letters,
nouns, verbs and emotions with musical
notes, sound effects and pictures.
Kayla’s first interest in autism came
from watching her young cousin, Lorena, diagnosed with autism at the age of
three. Kayla was looking for an idea for
the school science fair, and at the same
time wanted to help Lorena. She noticed
that Lorena’s attention was captured by
music and she could remember the words
to songs after hearing a song only once.
She took up the challenge of helping
her cousin and creating a winning entry into the science fair. The result was
Sounds into Syllables,™ a step-by-step
music-based teaching system designed
to help children diagnosed with ASD or
other learning disabilities to read, spell,
classify words and correctly identify facial
expressions for the six universal emotions
(happy, sad, afraid, angry, surprised and
disgusted). A combination of books and
CDs provide an interactive, self-paced
learning system.
Step One introduces the child to the
letters of the alphabet arranged on 26
keys of a piano (virtual). Each letter is as-
sociated with a musical note, the sound
of the letter and the written symbol.
Once the alphabet is mastered, 26
nouns are introduced, each beginning
with a different letter. For example, in
learning the word frog, the child spells
it on the ‘piano.’ Four distinct notes and
verbal sounds are generated. The child
can take as much time as needed and repeat the exercise as many times as they
want at their own pace. An accompanying A to Z Animal Book reinforces the
learning with visual stimulation.
Step Two introduces verbs associated with the nouns learned in Step One.
All the conceptual relationships are developed on Kayla’s computer program,
using animation to make the Lion roar
or the Dog bark. The animation allows
the child to view the animal they spelled
performing the verb they spelled. The
animal/verb combinations are placed in
social settings where, for example, one
dog barking triggers other dogs to bark,
and all express different facial expressions
and body language.
Step Three emphasizes the challenges of social interaction by teaching face
perception and emotion recognition.This
results in a modification of the virtual
piano keyboard to include six three-part
harmony sounds representing the universal emotions, using 18 black piano keys.
Each harmony sounds like the emotion,
and is marked with a matching yellow
face sticker. The harmonies and the musical alphabet have been integrated into a
40-page book, The Story of the Little Bear.
As Little Bear sets off on his journey, he
meets up with other animals who display
different actions and cause him to display
different emotions. The corresponding
sounds reinforce the understanding of
the situation in which the emotion is displayed. As the child progresses, he will be
able to combine nouns, verbs, adjectives
and emotions through repeated use, visual recognition and sound.
It has been over two
years since Lorena was
introduced to Sounds into
Syllables.™ She is able to read many
words, understands the sounds of all letters and has a strong understanding of
human emotion. She has been integrated
into the regular school curriculum with a
personal assistant.
Kayla’s ultimate reward is watching
Lorena’s progress, but she has certainly
earned other rewards as well. At 16, she
was one of the Youth in Motion, Top 20
Under 20,™ she won Best in Fair at the
2006 Canada Wide Science Fair, First
Place in the Behavioural and Social Sciences Category at the 2006 Intel International Science and Engineering Fair, the
2007 ITAC Hero Award (nominated by
Autism Canada), and earned scholarships
to study Psychology and Biology at Stanford University in California where she
will continue her research in autism.
Sounds into Syllables™ was recently
used in a study conducted by the Halton
Region Catholic School Board, between
October 2006 and June 2007 in which
16 elementary and high school children
participated. It is too early to determine
long term results, but suffice it to say, the
study is expanding this school year.
“My ultimate goal,” says Kayla, “is
to be able to make my system available to
other children like my cousin. I believe
that opening pathways to communication
is the key to helping children with ASD
function in the world around them.” 
WINTER 2008
AutismMATTERS 17
feature ARTICLE
Part 4
Political Activities: What
Charities Can and Cannot Do
by Esther S. J. Oh, B.A., LL.B. and Terrance S. Carter, B.A., LL.B.
Esther S.J. Oh practices charity and notfor-profit law with Carters Professional
Corporation. Terrance S. Carter is managing
partner of Carters Professional Corporation, is
Counsel to Fasken Martineau DuMoulin LLP
on charitable matters, and editor of www.
charitylaw.ca.
This article is reprinted with permission in
its entirety. Because of its length, we have
divided the article into four parts which
appear in the Spring, Summer and Fall 2007
and the Winter 2008 issues of Autism
Matters. This is the final installment.
18 AutismMATTERS
WINTER 2008
D. THREE CATEGORIES OF ACTIVITIES
3. Prohibited Activities
Prohibited activities are those activities that involve partisan politics or are illegal,
and are not permitted under any circumstances.
The CRA Advisory dated December 14, 2005, entitled “Important Advisory on
Partisan Political Activities,” expresses recognition by CRA that there continues to
be uncertainty among charities and members of the general public concerning what
activities would constitute a “partisan political activity.”
In addressing this issue, the said CRA Advisory states as follows:
Partisan political activities are those that involve direct or indirect support of,
or opposition to, any political party or candidate for public office. Registered charities are prohibited from partisan political activity, because supporting or opposing a
political party or candidate for public office is not a charitable purpose at law. There
are two aspects to the prohibition: the first restricts the involvement of charities with
political parties; the second restricts the involvement of charities through the support
of or opposition to a candidate for public office. Charities engaging in partisan political activities, which are clearly not in compliance with the law, risk deregistration.
As indicated in the CRA Advisory excerpt above, partisan political activities involve the “direct or indirect support of, or opposition to, any political party or candidate for public office.” Partisan political activities are clearly prohibited and therefore
participation in partisan political activities may jeopardize an organization’s charitable status.
While not expressly addressed in the above CRA Advisory, a “candidate for public office” can, in some respects, be distinguished from an “elected representative.”
Charities are cautioned, however, that support of or opposition to an “elected representative” may arguably be construed as “direct or indirect support of or opposition
to, any political party.” Therefore it is recommended that support of or opposition to
an “elected representative” also be avoided.
In providing further comments on partisan political activities, the CRA Advisory
also states as follows:
A registered charity is prohibited from directly or indirectly supporting or opposing a candidate for public office as well as a political party. In deciding whether
a charity is engaged in prohibited activity, we generally consider whether the
activity can reasonably be construed as intending to influence the outcome of
the election. This may include but is not limited to situations where a registered charity:
feature ARTICLE
• Provides financial or material contributions to a political party or candidate;
• Makes public statements (oral or
written) that endorse or denounce a
candidate or political party;
• Hosts an all-candidates meeting or
public forum in a partisan manner;
• Invites candidates to speak at different dates or different events in a
manner that favours a candidate or
political party;
• Publishes or otherwise discloses the
voting record of only one candidate
or political party on an issue;
• Posts signs in support of, or opposition to, a particular candidate or political party;
• Distributes literature or voters’
guides that promote or oppose a candidate or political party explicitly or
by implication;
• Explicitly connects its position on
an issue to the position taken on the
same issue, by a candidate or political
party.
Registered charities jeopardize their
charitable status if they engage in partisan political activity and should consult
Political Activities, CPS–022 to ascertain
whether, and to what extent, the activities
they seek to be involved in are permitted. Section 6.1 of the guidance provides
a general outline of the prohibition on
partisan political activities.
In application of the above principles to a charity context, an example of a
prohibited partisan political activity that
a charity must avoid would be a gift by
the charity to fund a political party that
supports the charity’s views on a given
matter. This activity would not be permitted because it is a “prohibited” partisan political activity and is not a gift to a
“qualified donee” which contravenes the
ITA requirement that charities may only
gift charitable funds to qualified donees.
An additional charity related example of
a prohibited partisan political activity
that should be avoided would be inviting a given Member of Parliament who
is seeking re-election for public office to
speak at a charity function without giving
an equal opportunity to all other candidates seeking election for the same office
position.
Other potential scenarios involving
prohibited political activities which have
been formulated based on an application
of the principles reflected in the CRA
Policy Statement include the following:
• Publishing statements that support a
particular electoral candidate in the
charity’s monthly newsletter, charity
e-mail distribution list, charity newsletter or on the charity website;
• Distributing leaflets highlighting
the lack of government support for
the charity’s position on any given
matter;
• Preparing a special dinner for campaign organizers of a political party;
or
• Attendance by a representative of a
charity, whether a director or officer,
in their official capacity at a political
fundraising dinner.
As indicated in the CRA Policy
Commentary on partisan political activities (CPC–007) released on October 14,
1992, a charity can charge fair market
rent to a political party for occasional
meetings held at the charity’s premises.
In this regard, the CRA Policy Commentary stipulates that the rental of the
charity’s premises in and of itself, would
not be indicative of support by the charity for the political party, especially in
rural areas where the charity may have
the only hall that can accommodate such
meetings. Accordingly, the CRA Policy
Commentary implies that charging fair
market value rent to a political party and
allowing usage of a charity or a charity’s
facilities would be permitted so long as
equal access and opportunity for such use
is given to all political parties.
The CRA Policy Commentary concludes by indicating that the determination of whether rental of a charity’s
premises by a political party in exchange
for a fair market value payment would
constitute direct or indirect support of a
political party is fact specific.
Accordingly, while renting premises
to a political party at fair market value is
not necessarily prohibited, the analysis of
whether a given activity would constitute
a prohibited activity would depend on the
facts of each case. Charities are cautioned
in engaging in this form of behaviour to
the extent that it could be interpreted not
only by the CRA but also by the publicat-large as a prohibited political activity.
E. IMPLICATIONS FOR CHARITIES
In summary, charities should keep in
mind the following guidelines in carrying on their activities:
• Ensure that activities are either inherently charitable activities or permitted political activities;
• Ensure that any allocation of resources on permitted political activities are well within expenditure limits
prescribed by CRA;
• Remember that any resources expended on permitted political activities cannot be included in the amount
used to meet a charity’s disbursement
quota requirement;
• Keep careful records of all expenditures devoted to permitted political
activities in anticipation of potential
audits by CRA;
• When completing the charitable
income tax return (Form T3010),
charities should pay careful attention
to the guidelines provided by CRA
which accompany the return and
should complete the forms as accurately as possible; and
• Abstain from prohibited activities.
Charities should also review the
CRA Policy Statement and related publications before engaging in any activities
of a political nature. Where a charity is
uncertain whether a given activity is a
charitable activity or a permitted political activity, the organization can make a
formal request for direction from CRA
before engaging in the activity. 
WINTER 2008
AutismMATTERS 19
feature PERSONAL STORY
Autism’s Marathon Man
The weather for the Boston area on April 16, 2007
was simply horrible – cold, strong winds and
rain. Hardly the weather for a marathon.
by Rick Ludkin
Dave recalls agonizing the
night before about what he should
do. “I almost had a panic attack…
worrying about what the weather
would be like.”
20 AutismMATTERS
WINTER 2008
I followed the developments carefully as I knew that Hamilton resident David
Morris, 39, would be trying to make up his mind whether to run or not. On the one
hand, he had worked so hard to get the chance to enter the world-renowned Boston
Marathon but, on the other, I knew he didn’t like poor conditions and might pass on
it. As it turned out, he decided to run, unlike more than 4,000 other runners that had
decided it would be too hard.
Official results show him as placing 10,100th overall out of more than 19,000
runners – “My worst finish ever.” He had struggled through a “diaper rash” caused
by wet clothing rubbing on his thighs (and eventually bleeding) and bleeding feet
caused by wet shoes (one of which didn’t fit well as one foot is longer than the other).
He notes that better equipment has now eliminated these problems, “It is better,”
he comments, “but $60 for shorts?” Despite his disappointment at his finish and the
pain, he observed that “the cheering of the crowds and the scenery was #1” and would
“make me want to go again …in better weather.”
He has had a remarkable running career. As a teenager at Hamilton’s Westdale
Secondary School, he ran on the cross-country and track and field teams – teams that
went to OFSAA when he was in grades 10, 11 and 12. In those days he wasn’t particularly fast: “I normally finished in the last half.” Well, things have changed.
David, who has Asperger Syndrome, has been involved with Woodview Manor
almost since its inception in 1988. For the past eight years he has lived on his own,
sharing a townhouse with another young man with Autism Spectrum Disorder (ASD).
Although he stopped running competitively after leaving high school, he continued
to run sporadically, usually for reasons related to his sensory sensitivities and social
discomfort. He would run rather than take the bus. (“I was uncomfortable in the
seats and the bumpy ride.” “People on the bus would bother me sometimes.”) It was
also cheaper to run than take public transit – and, as for most people with a disability,
funds are hard to come by.
He had set a goal that he would be married by the age of 35. As this magical age
approached and it seemed more and more unlikely that this would happen, he began
to get depressed and the focus on his loneliness just made things worse. In a counseling session around that time, I suggested that he needed to indulge in a pastime that
would take his mind off things and to help him feel better about himself. We went
over a number of options but he felt that running would be the best thing for him,
“because I knew I could still do it.” So he started in 2001, off and on at first, to train
on Hamilton’s new Bayfront Park Trail. This trail is paved and lit, has distances measured on it and is frequented by many people running, walking and cycling – a nice
place to be around people.
The more he trained the more he began to enjoy it. When he felt it was time to
move on to the next level, he set the 2005 Hamilton Around-the-Bay Race as his ob-
feature PERSONAL STORY
Month/Year
Race
Result
Place/# of Competitors
Rank
***“I screwed up.” David went in the
Early Bird Start as he didn’t realize how
fast he was. He got out well ahead and
missed some of the routing signs with
the result that he missed 2½ miles. It
sounded like a nightmare – he had to
stop traffic or cut across it many times in
order to continue.
March 2005
Hamilton: Around-the-Bay – 30 K
455/3,571
Top 15%
May 2005
Mississauga ½ Marathon
59/2,856
Top 2%
July 2005
Ottawa Marathon – 10 K
27/965
Top 3%
September 2005
Toronto Scotiabank ½ Marathon
168/4,738
Top 4%
October 2005
Toronto Marathon
***
March 2006
Hamilton: Around-the-Bay – 30 K
86/4,115
Top 2%**
May 2006
Mississauga ½ Marathon
47/3,975
Top 1.5%
May 2006
Ottawa Marathon
389/3110
September 2006
Toronto Scotiabank ½ Marathon
120/4,463
October 2006
Toronto Marathon
44/1583
March 2007
Hamilton: Around-the-Bay – 30 K
225/4,340
April 2007
Boston Marathon
10,100/~20,000
*Terrible race conditions: very hot and
humid. A CBC commentator described
Top 13%* participants puking by the side of the
road or just stopping. It was this race that
Top 3%
Top3%++ convinced David not to run (or even train)
in hot, humid conditions – conditions he’s
Top 5%
very sensitive to. “I knew then I wasn’t go~top half ing to do a race in the summer again.”
September 2007
Mississauga ½ Marathon
51/3,672
Top 1.5%
September 2007
Toronto Scotiabank ½ Marathon
153/5,348
Top 3%
++“My best ever marathon.” His time
qualified him for the Boston Marathon.
October 2007
Toronto Marathon
81/1,773
Top 5%+
+Requalified for the Boston Marathon.
November 2007
Hamilton ½ Marathon
24/980
Top 2.5%
jective. Initially he was going to do only
the 5 K run but was persuaded by Nancy
Hassard, one of the Manor staff, that he
had what it takes to do the whole thing
– 30 K! Despite the “worst finish ever
next to the Boston Marathon,” he now
knew that at least he could do it. Further,
he saw the need for some strategy that he
could apply in his next races: “I learned
to start near the front.” He had started in
the middle because he didn’t know what
to expect and, due to the large field, was
well behind before he even got going.
That first race put David on the
right course. He saw that he had the
ability to be a top level competitor. His
present classification as a “sub-elite athlete” pleases him considerably – and so
it should. He has trained to be the best
that he can be and his results show that
he is succeeding. And he feels much better about who he is and his personal situation, although he would still very much
like to have someone in his life. His increased confidence has caused him to
seek out other sports-related venues, so
he has involved himself in a wide range
of Special Olympics events: basketball,
soccer, floor hockey and swimming. He
sees these and running as being mutually
beneficial in terms of training and pro-
**“My best ever race.”
viding increased opportunities for meeting people.
When asked what he gets out of
running, David had these answers: “I
make sure I’m not getting fat, although
it makes me want to eat more. Running
calms me down when I’m upset. It gives
me something to do. It makes me better
at Special Olympics, especially soccer
and basketball. I really enjoy it, when it’s
not extremely humid.”
David would like major race events
to establish an award for disabled people
“who don’t have a physical disability but
are socially disabled.”
His advice to up and coming young
runners: find a good running trail that you
enjoy and train with a partner – “that’s
what I see a lot of people do.” Interestingly, David trains on his own. Although
I’ve encouraged him to join a running
group, he says “I can’t find anyone that
can run at my speed.” 
Registering in and traveling to major races like
these costs a fair amount of money, especially for someone on ODSP. If you would like
to contribute to David’s continued success
financially, you can send a cheque to Woodview Manor and specify that it is for David’s
running fund. Woodview’s head office address
is: 69 Flatt Road, Burlington, ON L7R 3X5.
WINTER 2008
AutismMATTERS 21
noteworthy news + views
A Description of
Asperger
Syndrome
In Your Corner
this is your space to share Chapter activities,
generate ideas and find ways to fill gaps locally
by Karyn Dumble, Chapter Liaison
by Dr. Tony Attwood
From my clinical experience I consider that
children and adults with Asperger Syndrome
have a different, not defective, way of thinking.
The person usually has a strong desire to
seek knowledge, truth and perfection with
a different set of priorities than would be
expected with other people. There is also a
different perception of situations and sensory experiences. The overriding priority may
be to solve a problem rather than satisfy the
social or emotional needs of others.
The person values being creative rather
than co-operative.
The person with Asperger Syndrome
may perceive errors that are not apparent
to others, giving considerable attention to
detail, rather than noticing the “big picture.”
The person is usually renowned for being
direct, speaking their mind and being honest
and determined and having a strong sense
of social justice.
The person may actively seek and enjoy
solitude, be a loyal friend and have a distinct
sense of humour.
However, the person with Asperger Syndrome can have difficulty with the management and expression of emotions.
Children and adults with Asperger Syndrome may have levels of anxiety, sadness
or anger that indicate a secondary mood
disorder. There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have
successful psychological treatment programs
to help manage and express emotions.
Reprinted with permission from Dr. Tony
Attwood’s website: http://www.tonyattwood.
com.au/
22 AutismMATTERS
WINTER 2008
You Make Families Smile!
York Region Chapter extends its sincere gratitude to Tim Horton’s and the many customers in the area for supporting the 2007 Smile Cookies campaign. This year’s one-week
promotion of Smile Cookies raised a total of $10,459 in proceeds. Thank you to Katherine
Webster, Diane Bond, Ambrish and Chhaya Thakkar of Tim Horton’s, as well as the many
other franchise operators in the Region. Thank you also to everyone who helped promote
the event and shared the cookies and smiles with their family and friends.
A Call to Artists
Mark your calendars for
2008
Our popular Autism Ontario Art Auction takes place on Wednesday May 21,
2008 at the St Lawrence Great Hall.
Join us for Autism Awareness Night
– Toronto Blue Jays vs the New York
Yankees on August 20, 2008 – 7:00pm
at the Rogers Centre.
Autism Ontario invites artists to submit
artwork for a competition. We would
like to create a limited edition series of
reproductions for use as thank-yous or
acknowledgements of appreciation to
key donors and volunteers. A special
committee will be established to review
submissions and make selections. For information regarding how to submit your
artwork, contact mail@autismontario.
com or call 416-246-9592.
Send your chapter news to [email protected] or fax it to 416-246-9417
noteworthy news + views
SEAC and President’s Council Look Me in
Training Weekend
the Eye
p L to R: Dr. Leslie Cohen presented to SEAC and Presidents on Advocacy for Students with
ASD. • Annie Kidder of People for Education • Barry Finlay from the Ministry of Education,
presented on the PPM 140 and Ministry of Education initiatives relevant to students with ASD.
More than 40 people responded to our
recent appeal for volunteers to review
this book. Selected reviews will appear in
the Spring issue of Autism Matters.
Autism Ontario held an outstanding training weekend from October 18 – 21, 2007. Training
on education matters for Autism Ontario’s Chapter Presidents and SEAC representatives
and staff was provided by many excellent speakers. See article by Laurie Pearce regarding
PPM 140 on page 5.
Student Researchers’ Travel Bursaries to IMFAR
We are pleased to announce the 2008 Autism Ontario Travel Bursary for the International Meeting for Autism Research (IMFAR) to be held May 15 – 17, 2008 in
London, England. This is the 3rd consecutive year that Autism Ontario has provided
this opportunity for Ontario Student Researchers to connect with many of the finest
ASD researchers in the world. Six bursaries of $1,600 each may be awarded in 2008.
One of the six awards is available to a Community Leader.
The majority of funds to support these bursaries are raised through Autism Ontario’s
annual Together for Autism campaign, and with support from members of Autism Ontario’s Research Committee. Check out the new public service announcement about
the 2008 Together for Autism campaign on our website: www.autismontario.com
The application deadline for the Travel Bursary is February 11, 2008. Details are
available at the following link: http://www.autismontario.com/Client/ASO/AO.nsf/
object/IMFAR+Bursary+2008-final/$file/IMFAR+Bursary+2008-final.pdf. The IMFAR
website is www.autism-infar.org.
Kayla Cornale
– CNN Hero
Kayla Cornale, 18, whose story appears
on page 17 of this issue, was among those
honoured on Thursday, December 6, in
CNN’s gala award program in New York.
Kayla received the CNN Hero award in
the Young Wonder category. We congratulate Kayla and look forward to more
wonders as she pursues her education toward a career in autism research.
WINTER 2008
AutismMATTERS 23