we have potential.

Autism Ontario
Summer 2006
VOLUME 3 • NUMBER 3
we have potential.
AutismONTARIO
see the potential
news link
Chapter Presidents of Autism Ontario
Brant & County
Rob Barnett 519-759-8286
Cambridge
Stacey Del Fabbro
519-653-8056
Chatham-Kent
Kelly Kirkman
519-358-1823
Dufferin
Victor and Karen Brown 519-940-4166
Durham
Lisa Wilson 1-866-495-4680
Grey/Bruce
Linda Dow-Sitch
519-371-7180
Kingston
Rob Rowe
613-546-6613X388
Halton
Cecila Vespa 905-631-1233
Hamilton-Wentworth
Sherri Houston
905-777-1100
Huron Perth
Kim Souch
877-818-8867X277
London
Marti Lussier
519-433-3390
Metro Toronto
Laurie Pearce
416-489-0702
Niagara Region
Mike Gowan
905-682-2776
North Bay & Area
Michelle Robinson 705-472-4283
Ottawa
Nathalie Bradbury 613-230-6305
Chapitre francophone d’Ottawa
Huguette Boisvert-Secretary
613-722-2482
Bernard Delisle
Peel
Colette Munroe
905-450-2299
Peterborough
Beverly Randall
705-748-4793
Renfrew County
Susan Sullivan
613-687-4301
Sarnia/Lambton
Susan Fentie
519-332-0333
Sault Ste. Marie
Kim Krumins
705-256-5302
Simcoe
Helen Aitken
705-326-2214X251
Sudbury & District
Call Karyn Dumble 416-246-9592X226
Sunset Country
Kim Cariou
807-548-4926
Thunder Bay & District
Michelle Murdoch-Gibson
807-622-9713
Upper Canada
Debbie Keillar
613-774-4822
Waterloo County
Jean Cojocariu
519-578-6606
West Nipissing
Bill Gingras
705-753-5326
Wellington County
Sharron Staniforth
519-993-6699
Windsor/Essex
Anne Hucal
Cristina Angileri
519-250-1893
York Region
Cenza Newton
905-780-1590
Autism Ontario (incorporated as Autism Society 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 Autism Spectrum Disorder is provided the means to
achieve quality of life as a respected member of society. The Autism
Newslink is published four times per year. Subscription to The Autism
Newslink is included with Autism Ontario membership. Newslink welcomes contributions from its readers. Send your articles, reviews, letters, comments, announcements, etc., to Margaret Spoelstra, Newslink
Editor. 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.
Autism Ontario
1179A King Street West, Suite 004
Toronto, ON M6K 3C5
Phone: 416-246-9592
Fax: 416-246-9417
[email protected]
5
Our New Name
and New Look
9
Pointers from the
Pool,
by Micole Ongman
7A Need to
Communicate,
by Cindy Zabek
15
Her Story,
by Ethel Berry
Other features
Fishing Fun, by Laurie Pearce
Theory of Relativity, by Michele Shapiera
Better Together, by Marti Leimbach
Unmasking the Spectrum - Gala 2006, by Monica Richardson
Autism Ontario Conference Highlights
A Measure to Evaluate the Quality of IBI, by E. Alice Prichard
10 Things Every Child with Autism Wishes You Knew, by Ellen Notbohm
Chapter Highlights
Lessons Learned in Supporting Individuals with Autism Spectrum Disorder,
by Glenn Rampton
Poems
A Hoopster’s Dream Come True, by Greg Asimakoupoulos
My Favourite Place, by Chip Lobay
Book Review
Guns A’Blazing, by Jeffrey Cohen, Reviewed by Robert Gauthier
4
6
8
11
12
16
18
21
22
10
21
21
What’s not in this issue...
Space constraints in this issue did not allow us to print a second excellent article by celebrated
British novelist Marti Leimbach. Her article on page 8 will leave you wanting to read more, so go to
our website at www.autismontario.com to read her personal story of courage and sacrifice on behalf
of Nicholas, her son who has autism, on our website at www.autismontario.com. After that, you’ll
just have to read her book, Daniel Isn’t Talking.
Attention Members/Subscribers: We often reference websites or e-mail addresses in articles to
allow you to obtain additional information. We recognize that not everyone has the ability to make
connections through the internet. If you require additional information regarding a particular
article or advertisement, please contact your local Autism Ontario chapter for assistance.
Newslink Editor
Editing, design and printing services, GEPM Group Inc. www.gepmgroup.com
The Autism
upfront
J
une and July 2006 were exciting months for Autism
Ontario.
• We unveiled our new name, look and website. Check out
page 5 for details about Autism Ontario. As it should, any
new look draws a wide range of responses, but if the cheers
of support at our June 16-17 conference and AGM were any
indicator, we have captured an important public message
about who we are and will be for years to come.
• Our Kid’s Grow Up conference was a huge success. See
details on pages 12-14.
• We dealt with a controversy. We had a real debate about
matters that are deeply personal to parents of children with
ASD and found ways to voice those differences while not
losing our focus of “acceptance and opportunities for all
individuals with ASD.”
• We had conversations with two key ministries. Autism
Ontario met with key representatives of MCYS and MCSS to
present the range of views of our members and the collective
voices of thousands of parents of children with autism and
Aspergers in Ontario.
• Autism Ontario launched the A BACUS website.
The ABACUS website aims to serve as the best possible
source of information so that parents, caregivers and
the general community can be informed consumers of
Applied Behavioural Analysis (ABA) services for individuals
with Autism Spectrum Disorder (ASD) in Ontario. Visit
www.abacuslist.ca.
• Autism Ontario acquired new funding. We were heard
by MCYS in our message regarding the need to support
families of children with ASD across Ontario. Minister Mary
Anne Chambers was quoted, “...$1 million to help Autism
Society Ontario (ASO) provide more supports to families
of children and youth with ASD, including parent support
networks, training, resource materials and access to
consultation with ASD specialists...” [MCYS News Release,
June 16, 2006].
• Autism Ontario supports ASD research at IMFAR.
Autism Ontario was able to support the attendance of 20
people to the International Meeting For Autism Research in
Montreal on June 1-3, 2006. This was the culmination of the
work of Autism Ontario’s Research Committee, fundraising
by the Toonies for Autism Committee and the eagerness of
student researchers to learn as much as they could at this
pre-eminent conference on ASD research. Nearly 1,000
international researchers were present at the conference.
Responding to support and
criticism
For many years Autism Ontario has had a strong emphasis on
issues that affect children and a desire for a greater balance across
the lifespan. Autism Ontario’s board urged this organization to
include a more specific focus on matters affecting adults with
ASD. As a result, a kit of materials was produced to assist chapters
in their efforts to advocate on behalf of adults with ASD in their
community.
A province-wide volunteer committee in conjunction with the
provincial office compiled the material for the kit. On June 17,
the committee presented the material at Autism Ontario’s annual
conference, which focused on adults with ASD.
The inclusion of a thought-provoking opinion piece in the
kit by one of our members, Doug Reynolds, generated a range
of responses. Some people were very upset by the inclusion of
the piece, others were strongly supportive of its presence and
still others were not sure what all the fuss was about.
We responded to the controversy by writing two open letters
to our members, which were distributed by our chapters via
e-mail. The letters explained in greater detail the context for the
advocacy kit and also acknowledged communication errors in
not separating the article from the kit as an opinion piece more
clearly, rather than an Autism Ontario policy piece.
In those same letters, we provided two opportunities for
people to be heard about Autism Ontario’s views regarding the
needs of adults on the autism spectrum and about the kit that was
distributed to members. Two teleconferences were scheduled.
Four parents specifically asked to participate. Autism Ontario
invited three representatives of the adult steering committee,
one board member and one staff member to participate in
those teleconferences. Viewpoints were heard, but there was
also agreement to strongly disagree. One participant made a
good suggestion—that we should create more opportunities to
hear each other on a variety of topics through teleconferences
or other public forums.
We also invited people to submit letters on this topic to this
issue of Autism Newslink. Although many people expressed
their views via e-mail, few indicated a desire to have those
views printed. Portions of the letters that were submitted can
be found on page 20.
Margaret Spoelstra, Executive Director
Autism Ontario Staff: Ethel Berry (Manager - Information, Member & Donor Services), Margaret Spoelstra (Executive Director), Karyn Dumble (Chapter
Liaison), Barbara Worrall (Administrative Staff), Bonnie McPhail and Ron Harrison (Toonies for Autism Co-Chairs), Esther Zhou (Senior Bookkeeper on leave),
Gayle Height (Interim Senior Bookkeeper), Selena Tran (Part-time Bookkeeper), Marilen Miguel (Community Relations), Jean Woolford (Special Projects
and Newslink Managing Editor), Patricia Gallin (Program Support Coordinator)
Board of Directors: Nancy Ambrogio, 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
Summer 2006 The Autism Newslink
Welcome to our Staff
Marilen Miguel joined the staff of Autism Ontario in
April 2006 as Community Relations. She is the main
contact person for the ABACUS™ website, a registry
of ABA providers in Ontario. She will also be assisting
in various projects initiated by Autism Ontario.
Marilen has been working in the non-profit sector
for nine years providing support in the areas of
administration, fundraising and communications,
communit y outreach, and in the provision of
information and service referrals. Marilen most
recently came from respiteservices.com, a support
mechanism for the developmental services sector in
Toronto and under the auspices of Geneva Centre
for Autism.
O
Fishing Fun
by Laurie Pearce, Metro Toronto
Chapter President
The Autism Newslink Summer 2006
n a perfect summer morning in one of Toronto’s gems, High Park, families
of children with ASD met for our first family fishing event. This was part
of the province-wide Family Fishing Weekend. The pre-event, just for our
family members, was organized by Mathew Rossi, an avid fisher-person as well as
the web developer of Autism Ontario’s new website.
For many families, this was a first-time attempt at fishing. The children, both
those with ASD and their siblings, were given their own rods and their choice of live
or imitation (colourful, but still a little slimy) worms. Volunteers from the Ministry
and several nature-oriented Toronto groups helped assemble the rods, distribute
worms, and offer help and trouble-shooting.
The families had a marvelous time, spread out along the picturesque Grenadier
Pond (with the hum of Indy cars in the background on that particular weekend). It
was most impressive to see how much care and attention some of the children took
with the task – one youngster, when approached to see how things were going, sternly
said “I can’t talk to you now—I’m fishing!” Several fish were caught, some by our
families, some by other members of the public, and everyone got a chance to gather
around and admire the fish before they were returned to the pond. A fish tank was
set up nearby to hold some of the caught fish for additional fishy encounters.
The children went home with their rods, along with other fishing-related goodies,
and more than a few undoubtedly woke up the next day wanting to fish again.
Special thanks for this event are due to Mathew Rossi, Shawn Verge of the Ministry
of Natural Resources, Ontario Out of Doors magazine (www.fishontario.com) who
provided the free goodies and sponsored the event, and Walter Oster, Chairman,
Canadian National Sportsman’s Shows, who donated the fishing tackle.
t Matthew Hrybinsky tentatively examines a fish that didn’t get away.
Our New Name
and New Look
Helping Us Connect with More
Ontarians
E
veryone likes to have a new look—a change of hairstyle, a
stylish new outfit. But we don’t change our look for vanity’s
sake. We change our look to be noticed; to be seen, heard
and respected.
We have long known that all of us involved with ASO—parents,
volunteers and staff—deserve greater respect and recognition for
all that is accomplished in our community. We must celebrate the
advances that ASO has made of behalf of those with ASD and their families. It is also important for us to stand out with supporters,
donors, media and the government.
A new visual identity is a natural first step, but it’s not something you get off the shelf in a store. We embarked on a careful,
year-long process to help us develop a new name, an enhanced brand (our promise to our audiences), a new look and a new
website.
It all started in May, 2005 when the ASO Board of Directors developed a five-year Strategic Plan. This led to the hiring of Layne
Verbeek of iCommunicate in September. Since that time, a number of key initiatives involving extensive consultation and research
took place:
• An extensive communications audit was conducted through November and December (based on web surveys to all chapter
presidents, the Board, provincial office staff and SEAC representatives, as well as 12 one-hour interviews).
• In January, Layne presented a comprehensive communications audit and three-year communications plan to the Board.
At this time the Board also reviewed a number of logo concepts.
• In February, after the results of the audit and details of the communications plan were presented to chapter presidents,
a Branding Committee was struck. It was comprised of three Board members (Claudio Del Duca, Jane Houlden, Monica
Richardson), three randomly-selected chapter presidents (Victor Brown – Dufferin, Cindi Buick – York, Alex Meyer
– Windsor) and two provincial office staff (Karyn Dumble, Margaret Spoelstra).
• Layne then led the Committee on a branding exercise, which helped them identify the specific idea that best represents
ASO and its chapters’ purpose, values and promise.
• The Committee met three times in April to finalize a brand message, and to review and select a final visual concept from
over 30 designs.
• Soon after, the new brand and new visual identity were approved by the Board.
We are confident that this new visual identity and logo will serve us well in invigorating our purpose, advancing our goals,
increasing our numbers, and getting the rest of Ontario to take notice!
Our Brand: We are the voice of autism in Ontario
Our Visual Identity:
In our logo:
• Our graphic elements are “seeds of potential”
• Red is for the initial feeling of helplessness,
f r u st r at ion , a nd a nger w hen aut i sm i s
determined
• Blue denotes hope, change, and support
• Green is for growth, vibrancy, living a full life,
and the potential of the individual
Check out our new website at www.autismontario.com and watch as we plant more seeds of potential across Ontario.
Summer 2006 The Autism Newslink
lifestyle
Theory of Relativity
(Or, “There, but for the grace of God...”)
by Michele Shapiera, parent and educator
N
ot one of us is immune. Now, before you think by my
choice of titles, or the first line of this article, that I am
talking about advanced scientific notions, religious
philosophy, or the dangers of invading flu viruses, let me qualify
that statement.
We like to observe others—their lifestyles, relationships,
social behaviours, the clothes they wear, the jobs they have—you
name it. Why is that? Are we an intrinsically curious species,
always seeking to expand our minds? Sadly (although I hope that
is true of the best part of ourselves), I fear the reason we do this
heavy scrutinizing is because we need an external yardstick to
measure how we are doing in our lives relative to those around
us. Sample internal dialogue: “Let’s see. I’m still married, while
I know the Smiths are breaking up. Check. Hmm. She has way
nicer clothes than I have. Damn! I have those stress headaches
but I heard about poor Sarah’s cancer diagnosis. Check. My
boy may not be an Ontario scholar, but thank goodness he is
“normal” and not in one of those special classes. “There, but
for the grace of God…” Full stop.
I think one of the reasons why so many of us are intimidated
by people with noticeable handicaps is because it subconsciously
reminds us of our vulnerabilities, not just in that particular
arena, but in life. These visibly fragile individuals remind us of
how tenuous it all is. How one step to the right or left takes us
off of the path and breaks down our carefully erected barriers
meant to keep us safe.
There is no such thing as “safe.” There is no individual smart
enough, strong enough, rich enough, deserving enough to be
immune from life’s challenges. What is important is what we
decide to do with them. This is where the theory of relativity
comes in. For example, my son with autism was having some very
anxious nights recently. Unfortunately, high anxiety translates
into a lot of high-pitched noises from him as he struggles
to articulate his acute stress. Sometimes those high-pitched
noises go on for a long, long time. Well, if you are the parent
of a special needs child, you often don’t have that check and
balance system I explained above, because there is no one to
compare with. You can quickly despair as the issues seem to
loom larger and larger, totally eclipsing the landscape of your
life. But, like everything else, these challenges are relative. I had
the good fortune the night of the loud crying to get a phone
call from a friend I had not heard from in probably two years.
Her son has autism too. He also has epileptic seizures every
hour of his life. He has medical issues which made them finally
The Autism Newslink Summer 2006
withdraw him from school altogether, and install round-theclock medical assistance. She gave me back some balance. She
made me feel so profoundly grateful for my son’s success at
school and his robust good health. That is not to say my mental
equilibrium was restored because of her son’s misfortune—it
is about perspective. We need to say, “This is what I have,” not
good, or bad, this is just what it is. “What can I do to be joyful
in my life situation? How can I share that joy with others?” My
friend didn’t call to complain, but to tell me how happy she was
to have a good team of workers for her son so she could focus
on her job (helping kids), and therefore feel empowered to be
more joyful in her life situation. I felt small and ungrateful. I
think ingratitude is the most spiritually crushing philosophy we
can choose. Every adversity in life offers us a choice. What will I
do in this situation, this relationship, this disappointment, this
challenge? Will I become a better or lesser person as a result of
how I react? Will I find in that situation what I have to be grateful
for? Will I learn and grow or will I capitulate to my lesser self?
We have a choice every single time, and a new chance in every
single exchange we have with another person, every day we are
given to live. I hardly feel deserving of these endless chances
for redemption, chances to make something of my life, but I’ll
tell you something. In the grief and joy I have experienced in
my life thus far, I have at least learned that every day is full of
opportunity, and a thousand chances to make a difference,
however small. I’d say that’s better than living in a bubble of
immunity, because it is really and truly, living.
A need to
communicate
“Just because someone can’t speak, doesn’t mean
they don’t have anything to say.”
by Cindy Zabek, P.Eng., MBA
E
veryone has a need to communicate, but when someone
has challenges with speech it may be difficult to get their
ideas across. Individuals may feel frustrated and angry
when not understood, resulting in behavioural challenges
and withdrawal. Providing individuals with an augmentative
or alternative communication system can help develop
communication skills, improving relationships, behaviours and
the ability to learn.
My husband and I have three children: Alex, 7; Ben, 5; and
Mary, 2. Alex was diagnosed with Down syndrome at birth, and
with autism several years later.
Like many children with autism, Alex struggles with
communication. He requires extra time to process verbal
information and acquires skills slowly due to cognitive
limitations. He has the characteristic low muscle tone and
larger tongue typical in children with Down syndrome, further
increasing his speech challenges. Years of speech therapy have
helped, but it was clear from an early age that Alex would
benefit from augmentative communication tools. As children
with autism and Down syndrome are often visual learners, we
developed a picture-based communication system.
Under the guidance of a speech and language pathologist, we
introduced a Picture Exchange Communication System (PECS)
when Alex was 3. Amazingly, he quickly grasped the concept
and within a few weeks was requesting favourite items using
his pictures. We added pictures for toys, places, activities and
people to expand his vocabulary. Later came an “I want” strip to
expand his sentence structure and descriptors to differentiate
between similar items. We saw improvements in Alex’s speech
as he would verbalize each word when pointing at its picture.
The PEC System was so effective in improving Alex’s
communication that we started looking for other opportunities
to use pictures to assist him. His ability to “read” sentences made
up of picture symbols allowed us to create visual routines to
guide him through various activities. A daily schedule helped
Alex with transitions at school. I modified books to allow him
to “read” using pictures and made custom flash cards to teach
new vocabulary and develop social language.
Picture-based communication tools have allowed Alex to
communicate basic wants and needs. His vocabulary and
Alex discovers ways to read and communicate through the Picture
Exchange Communication System
sentence complexity have grown, as has his comprehension
of what others say. They support his speech development and
enhance relationships with his family and friends. He talks more
and we understand more of what he says.
Alex is lucky—many parents do not have these tools. There
are few public resources available, especially for older children,
and those that exist tend to have long wait lists. Private speech
therapists are excellent resources, but would be financially
prohibitive if used to develop the tools our children need. It
can be expensive, time consuming and technically challenging
for parents to set themselves up at home.
The challenges I faced in getting the tools I needed for Alex
led me to set up a new business—Making Connections. I hope
the services I provide make it easier for parents to access the
communication tools their children need.
For more information please visit my website at www.makingconnections.ca or
call me at 647-723-8802 or e-mail [email protected] .
Resources:
•
Making Connections develops products that utilize picture communication symbols to visually assist people with special needs in their
efforts to communicate and learn.
•
Consider the services of a speech and language pathologist if you require
professional assessment and/or guidance.
For an introduction to Picture Exchange Communication Systems, consider A
Picture’s Worth. PECS and Other Visual Communication Strategies
in Autism, by Andy Bondy, Ph.D. and Lori Frost, M.S., CCC/SLP. This book is
available through Parentbooks, www.parentbooks.ca.
Summer 2006 The Autism Newslink
socialmatters
Better Together
by Marti Leimbach
T
he juniors at my son’s primary school recently performed
Macbeth, an ambitious undertaking for primary school
children. Nicholas had a very small part. He did have a
line—okay, a word—but mostly he was off stage among the
invisible choir, well out of the way of the action, which was
probably just as well. On the night of the performance he
complained constantly about how he did not want to be in the
play. He didn’t like the costume, didn’t know his line (word)
and thought the whole thing was boring. Couldn’t he stay home
and watch Basil Brush reruns instead?
I am used to this. Nicholas has raised “awkward child” to
an almost professional status. If you take him to a movie he
may prefer to stay in the car. If you take him bowling he would
rather look at the pinball machines. If you take him to a friend’s
house, he immediately asks where the computer is. Nicholas has
autism, and as proud as I was of him being in the school play
(and believe me, this was a major achievement for him) I was a
little anxious about what might happen mid-performance. After
all, when you put Nicholas under pressure, in close quarters
with so many people watching, anything can happen.
Meanwhile, on the same night, in a different part of Berkshire,
my husband was attending our daughter’s choral concert.
Imogen is one of those extraordinary children who gets put
in top sets not because she is such a genius but because she
works hard, respects her teachers and continually strives toward
excellence. If you take her to a movie, she thanks you three
times before you’ve even picked up the tickets. If you take her
bowling, she offers to let her brother have an extra go, throws
the game so he wins, or waits patiently through his temper
tantrum if he doesn’t.
When we go places with Imogen, people compliment us.
They remark about how clever she is, or how cheerful, how
interesting or nice. It is wonderful to go around with her
because you can feel, however erroneously, that her charm is a
reflection on you, on your superior parenting skills or combined
genes. That is just one reason why a child like Nicholas is such
an essential member of our family. It isn’t just that we love him
(we adore him) but he teaches us something about ourselves
and about people around us. With Nicholas, you will rarely get
a compliment. “He has such nice blond hair” is about the sum
and total of what we might hear on a good day. What usually
happens is people try to ignore him as he fastens his attention
on something they have that he wants. Nicholas has an obsession
with guitars, so a busker may be accosted with questions about
the particular model of guitar he is playing, then urged to play
a song from Deep Purple rather than the soulful folk tune he’d
been strumming before Nicholas appeared. Nicholas also loves
trains and I have seen him ask someone to get up from their
seat because he wants to sit where they are, because they are
in the “exact middle” where he wants to be.
With Nicholas you will never go unnoticed. He stands outside
the guitar shop jumping up and down and clapping, then
The Autism Newslink Summer 2006
Celebrated author, Marti Leimbach (right)
came to Toronto to launch her new
book, Daniel Isn’t Talking, (available at
bookstores everywhere, published by
McClelland & Stewart, ISBN 0771052022).
Daniel Isn’t Talking is a remarkable story about a
mother who discovers that her three-year-old son is autistic. Desperate
to help him and frustrated by the seeming limits of the conventional
medical system, she takes Daniel’s care into her own hands. Passionate,
moving and heartbreakingly real. On April 29, she did a book reading for
ASO at Grano restaurant in Toronto. She is pictured here with Anissa Tollis
who attended the event.
making sweeping “air guitar” gestures, oblivious to the stares
and raised eyebrows that he receives. At the playground, he
makes me immediately unpopular with surrounding mothers
by announcing—coolly and irrefutably—that he does not wish
to share, nor will he play with anyone with green eyes.
“Why?” I asked him later. “Why did you have to say that to
the boy with green eyes?”
“Because I don’t like green,” he said. If he were more verbal
he might have added, It’s nothing personal.
I am incredibly proud of both my children—and I think they
illustrate a larger point, which is that two completely different
types of children—one a high-achiever and scholarship winner,
the other a “special needs” child hanging on for dear life at a state
school—can exist side-by-side much of their day, peacefully and
happily. The truth is that they are best when they are together.
As different as they are, they are siblings who play together and
have their secrets from Mum and Dad, who tell each other jokes
and always ask when the other one is coming home. There is no
finer argument for “inclusion” of autistic children in mainstream
schools than my daughter and son sitting together reading books
at bedtime (her book, When Hitler Stole Pink Rabbit; his book,
Thomas the Tank Engine: The Complete Collection), or seeing
Imogen coax her brother onto the ice at a skating rink, holding
him up as they move painstakingly together.
There are times when we do things apart—Imogen can only
spend so much time at train museums and guitar shops, while
Nicholas cannot be expected to survive a day of high speed
rides at Thorpe Park. But having such different children has
not caused us to feel divided as a family, but rather a little more
humble, a little more respectful of differences in others, and
perhaps a little more tolerant than we used to be.
Visit www.autismontario.com to read another heartwarming personal story
by noted British novelist Marti Leimbach and www.martileimbach.com for
information about her book.
Pointers from the Pool
by Micole Ongman, Program and Aquatic Supervisor,
Town of Whitchurch-Stouffville
S
wimming instructors and lifeguards are taught many
principles that may be appropriate and transferred
easily to those working with children with autism. It is
most important for instructors and lifeguards to understand
whom they are working with, that each child is different, that
children want to trust their teacher, to have fun and to enjoy
their experience. Here are 25 pointers that have applications
well beyond the pool.
• Be consistent.
• What works for
• Safety is always first and foremost.
• Establish rules right from the start and associate them with a
•
•
•
•
•
•
•
•
•
•
•
picture/visual if possible. Pick the important ones and keep
it simple.
At each class, go over the rules again. Don’t expect them
to be remembered. Point to the visual if the rule is broken
so that they understand what should be done. It helps to
explain so they understand why the rules exist.
Be aware and be prepared for medical concerns.
The water may be very intimidating, take progressions
slowly.
Don’t miss out on successes. What you think they should
be doing for success may not be what they are actually able
to accomplish and many of their successes go unseen. For
example, the instructor may be frustrated that the child
is not putting his face in the water, but the child may be
focusing on the water, getting to know the texture and feel.
For them that is a huge success.
Praise successes based on personal bests and skill building.
Don’t compare them to the other kids or to the criteria
on the worksheets. There is always an accomplishment.
Sometimes you need to look really hard and understand
the child to recognize it.
If you think they aren’t listening, you are probably wrong.
Learn from parents who their favourite characters are, then
relate learning activities to that character. They may not be
able to do something because they are shy or overwhelmed
but they might be able to do it as Dora the Explorer, etc.
Follow their lead and try to get what you want done inserted
into what their focus is. Work with their focus rather than
expecting them to keep up with you.
Lead transitions smoothly. If you are at one end of the pool
blowing bubbles and need to go to another area, do walking
bubbles or something that links the activities.
If they are focused on an activity and doing well at it, ask
yourself if you really need to move on to the next thing right
now or can you go with the moment and allow them to do
this longer.
Establish routines that do not change. Always meet at the
same place for the beginning of the class. Start with the
same activity to get them comfortable. End the class with
the same activity to end with a success and to allow them
to be aware that the next step is going out of the pool and
class is over.
•
•
•
•
•
•
•
•
•
•
one child may
be a disaster for
another. Don’t
try to do canned
lessons. Read in
the child what
works and what
doesn’t and adjust lessons as
necessary.
Use one command/direction
at a time. Keep
it simple. If they
don’t do it, it probably means that they need it explained
again in another way.
Everyone must respect the others’ personal space. Before
you touch them to assist with a float or skill, let them know
what you are going to do and that you need to touch them.
Demonstrate on someone else if possible.
Skills that are usually broken down into two or three steps
may need to be broken down to 10 or 20 steps.
Assist children from the change room.
Use their names whenever possible. Make sure you introduce
yourself in any situation. Children are usually much more
comfortable once they know your name.
If there is a problem between two children, there is usually
a reason and it is often in response to something one child
did. Find out what the trigger was. It may be helpful to ask
caregivers what types of triggers there may be and avoid
those situations if possible.
Rules and consistency are very important. They need to be
clear, to the point, visual if possible and explained.
If necessary, have a dry run of a visit to the pool. Bring the
child in with their parents, siblings, etc. and let them practice
or role play how to obey pool rules.
Have a plan in place on how to deal with issues. If a rule is
broken or they are not listening, have a meeting place that
they are asked to go to so that things can be discussed, they
can calm down, etc.
It is too distracting to yell out directions or questions when
they are in the pool. Devise a hand signal to alert them of
the need to come to the side. Practice that with them over
the course of the swim.
Be creative and have fun. Don’t let their personal achievements
slip by your notice. There is always something to praise.
Micole is very active in Autism Ontario York Region chapter and has a young
son with ASD. She brings personal experiences to her professional work.
Micole also sits on the Council for the Lifesaving Society, Ontario Branch.
Summer 2006 The Autism Newslink
A Hoopster’s Dream Come True
A special needs student,
he dreamed of the day
his coach would say “Jason,
it’s your turn to play.”
And then came the last game
and out of the blue
the coach said, “Suit up, son.
Tonight’s game’s for you.”
But Jason McIlwain
was hardly convinced
his dream would be realized.
He sat on the bench.
He sat with his teammates
all beaming with pride.
His team dominated.
Their lead was quite wide.
While dressed in his street clothes
as managers are,
this wanna-be hoopster
was hardly a star.
Just then he heard “Jason,
it’s your turn. You’re in!
You’re part of the team
so go share in our win.”
He gave the team water.
He handed out towels.
He cheered for his teammates
and protested fouls.
Good Lord, it was magic
as everyone screamed.
This special needs student
was living his dream.
Autistic and awkward,
and often left out,
young Jason refused
to get angry or pout.
In the space of four minutes,
he scored twenty points.
The grandstands went wild.
Every fan in the joint
He did as requested
and honoured his team.
But never gave up
on his unlikely dream.
knew Jason was gifted.
The whole crowd agreed
that labels are lethal
when you’ve special needs.
To be called autistic,
you’re thought of as odd.
You’re misjudged as if
you’ve been orphaned by God.
How hurtful. How stupid.
How wrong can folks be.
Quite often these kids
are much smarter than we.
From Jason McIlwain
we all have been shown...
You can’t judge another
by what he’s most known.
Within every person
God’s image is seen.
So why don’t we help them
discover their dreams?
Greg wrote this poem because of the feel-good basketball events
with Jason McIlwain. Greg is the author of nine books and more
than 250 poems. He lives in Mercer Island, WA. This poem originally
appeared at www.partialobserver.com (Rhymes and Reasons).
10
The Autism Newslink Summer 2006
by Greg Asimakoupoulos
Unmasking the Spectrum - Gala 2006
by Monica Richardson, 2006 Gala Committee Chair
Board Vice President
A
utism Ontario (then still known as ASO) held its third Fundraising
Gala on April 29 at the Montecassino Banquet Hall in Woodbridge.
About 100 guests dined in an elegant setting and were inspired by
guest speaker, David Patchell-Evans, founder and CEO of GoodLife Fitness/
Vita Vae. ‘Patch’ shared the story of his phenomenal business success, his
commitment to physical and mental well-being, and his devotion to his
family and his daughter Kilee, diagnosed with ASD at the age of 2½. Patch is
a strong supporter of research in the field of ASD and has been very involved
and generous to the local university in London, Ontario.
In addition to a Silent Auction offering a variety of gifts and services—gift
certificates to restaurants, spas, sporting events, sports equipment, wine, p David Patchell-Evans with Eileen Suchet (Gala
and much more—we danced the night away to the sounds of the Welsman Committee member)
Brothers. Their fabulous music dating back from the ’70s had many up on
the dance floor.
Thanks to the Gala Committee and their commitment to this annual event, who gave tirelessly to all the planning and activities
of the night. Without this volunteer team, the Gala would not happen. We thank staff members who also gave of their time in
preparation and helped with many administrative tasks. We fell short of our ambitious goal of 250 attendees and raising $25,000,
but we will continue to build awareness of ASD and contribute to the provincial office.
The next Gala is already being planned for the fall of 2007.
Our Thanks
p Autism Ontario staff Barb Worrall (L) and Gayle Height with Béco
(mascot for BMO Fountain of Hope)
Autism Ontario greatly appreciates the ongoing generous
support from BMO Fountain of Hope. Every year, a special event
is held where selected charities come together to get to know
BMO employees and learn about their charitable support.
Fountain of Hope is run entirely by the employees. Money
for charities is provided through the personal involvement
and financial support of employees, pensioned employees,
customers and friends of BMO Financial Group.
11
Summer 2006 The Autism Newslink
p Autism Ontario Board of Directors for 2006-07 (L to R) – Michael Spicer (Treasurer), Ginny Pearce, Monica
Richardson (Vice President), Dr. Cynthia Goldfarb, Lynda Clayton (Secretary), Jane Houlden, Leslie Broun, Deborah
Kitchen (President), Leah Myers (Chair of Presidents’ Council), Jane Burke-Robertson. Kneeling: Claudio Del Duca
(Past President). Absent: Nancy Ambrogio, Linda Gibson.
Conference
Gerry Bloomfield Awards 2006
Congratulations to t Chuck
Learn, recipient of the Gerry
Blo om f ield Aw a rd i n t he
Volunteer category. As stated in
the nomination, “He continually
strives to ensure that the lives
of children, youth and adults
with ASD and their families
receive appropriate services
and programs and have a voice in their community
(Halton). ...There is no end to the sacrifices that Chuck has
made to dedicate his energies and resources to the autism
community. Chuck recognizes no regional boundaries,
helping anyone, anywhere, any time.”
Other nominees in this category were Flavia Orvitz
(Niagara Region) and Leah Myers (Durham Region).
Congratulations go to Rick Ludkin of Woodview
Manor who is the recipient of the Gerry Bloomfield
Award in the Professional category. “As the Director of
Woodview Manor, Rick Ludkin has been the driving force
behind its programs. Rick and the staff at Woodview
Manor have worked tirelessly to develop and maintain
innovative programs to provide consistent, meaningful
social and vocational opportunities for the adults and
adolescents with autism whom they serve” (quoted from
the nomination).
Other nominees in this category were Dr. Joan Jory,
Registered Dietitian and Clinical Nutritionist and Laura
Hutchinson, Manager of the Speech-Language Pathology
Department at Groves Memorial Community Hospital.
12
The Autism Newslink Summer 2006
I
t was an intense two years as President, and because of the heighten
thank a couple of people for doing a fantastic job for Autism Ontari
Margaret Spoelstra is doing a remarkable job for us, and we woul
Many Board members, and members of Presidents’ Council have echoed
us six years ago, she began working in earnest to make inroads with go
ministers have come and gone, leadership went from Conservative to Libe
These inroads must be credited to Marg’s diligence and persistence, w
is a valued benefit to every member. Finally, after more than 30 years, w
(Education, Finance, Children and Youth) and our loved ones with auti
Minister Chambers, in announcing that our organization would rec
invaluable in helping her understand the needs of individuals with autis
building bridges for us through her hard work and dedication. Thank y
At our AGM, we offered a fond farewell to Christine Dade as she steps
Ontario. Fortunately, it was not a final goodbye. She still serves the Bo
the Board of Autism Society Canada. Christine will be our liaison, help
organizations.
Christine was an excellent mentor for me because of her knowledge
issues, and of course, what it means to provide the best possible outc
maintain a level of professionalism at every meeting, but I will miss h
common sense to each subject that was being discussed. Thank you, Ch
We have a few new members who joined the Board at the AGM, a
President, Deborah Kitchen. We have some exciting work ahead of us (f
and I look forward to rolling up my sleeves and getting back to work th
I hope everyone has a safe, happy, healthy and relaxing summer ho
p Ethel Berry (Left), Stacy’s mom, presented the award to Dr. Holden.
W
e Highlights
Read Ethel’s and Stacy’s story on page 15.
ned level of activity, the time just flew by. For my final words, I want to
io.
ld not be where we are today if not for her. These are not just my words.
d this same sentiment repeatedly. Since Marg started with
overnment officials in all ministries. Over the years, many
eral, yet the lines of communication have been maintained.
which puts our organization in an enviable position, and
we have the ear of some of the most influential ministers
ism have a voice.
ceive funds, said that the input from Autism Ontario was
sm, again proving that Marg is an excellent communicator,
you, Margaret.
down from the Board after eight years of service to Autism
oard by holding her seat as the Ontario representative for
ping to maintain good communication between our two
e and understanding of governance, by-laws, procedural
comes for all citizens in Ontario with autism. She helped
her ability to infuse wit and humour as well as plain old
hristine.
and I look forward to serving with them under our new
following the announcement of funds to Autism Ontario)
his fall... but first, it’s vacation time.
oliday.
Claudio Del Duca
hen Stacy passed away in November, 2003, the Stacy
Lynne McNeice Memorial Lecture Award was created
in her memory. The award was established to honour
excellence in shaping our understanding of and response to
people living with Autism Spectrum Disorders.
On June 17, the Stacy Lynne McNeice Memorial Lecture Award
was presented to Dr. Jeanette Holden, guest speaker at the
ASD Conference, “Kids Grow Up.” Dr. Holden shared stories of
her brother, Jim, who has ASD. She also spoke about the need
to empower families. “Parents are the key to understanding
autism,” she said. “Parents know best, they are the experts.”
Dr. Holden is a professor of Psychiatry and Physiology at
Queen’s University. Her major research focuses on ASD. She
is Program Director of Autism Spectrum Disorder Canadian
American Research Consortium (ASD-CARC). In addition,
she maintains an active role in studying the genetics of
developmental disabilities.
Dr. Holden was a member of the Board of Directors of Autism
Society Ontario.
More on page 14 u
p Ottawa delegates L to R – Anita Acheson, Nathalie Bradbury (Chapter President) and
Marlene Steppan
13
Summer 2006 The Autism Newslink
p Autism Ontario
acknowledges Christine Dade
for her years of service on the
Board of Directors
p King Chuck. When Chuck Learn
(recipient of the Gerry Bloomfield
award) became Halton Chapter
President, a member named him
King Chuck in fun but also knowing
what a great person he is!
p Happy reunion of long time members Howard Weinroth and Eleanor
Stephen Ritchie
t Deborah Kitchen has been
elected President of the Board of
Directors
u Lisa Wilson (L) is the new President of Durham Chapter with Leah
Myers, Past President of Durham
t Conference participants appreciated
Parentbooks’ display at the conference. Bill
Elleker of Parentbooks commented, “What a
charged atmosphere to walk into—and how
gratifying to have ASO’s work recognized by the
Province in this way… [see p. 3 for details from
Margaret Spoelstra] We do appreciate having
the opportunity to contribute to the effort of
Autism Ontario.”
14
The Autism Newslink Summer 2006
Her Story
Written 11 years ago, this article pertains
to adult issues as well today as it did
then. The author hopes that it will bring
understanding and compassion towards
these issues.
by Ethel Berry, Autism Ontario Staff Member
Stacy,
my 24-year-old daughter, has autism. When
I discussed with her about telling her story
it did not seem to make her uncomfortable.
I have travelled the road you are travelling and if I can help
you along the way it would make me happy. Some day I hope
every one of you will be able to tell a story like mine with such
a positive ending. I guess this is a success story. We won.
Two years ago I didn’t think that was possible. An organization
I had been actively volunteering for told me, “Sorry, but your
daughter cannot be a part of our residential program at this
time,” although three of my friend’s children were accepted.
I was totally devastated! It was possibly the lowest point in my
life. My sister was so worried she sent me flowers and contacted
our mother who was wintering in Texas. I was ready to give up,
but somehow we carried on.
The rest, as they say, is history—or in this case, “Her Story.”
In February 1994 I met with Community Living Georgina. I was
amazed at the way this organization operated. They were more
than willing to create a program that would suit my daughter’s
needs, in contrast to all the other agencies that insisted she
would have to conform to their standards.
Community Living Georgina was wonderful. My daughter
moved into her new home on November 1, 1994.
We went through all the transition stages, and I drove back
and forth several times, but it was well worth it.
I felt it was better to have input into her life now than to wait
for a situation to develop when she would have to be placed
because I was no longer able to care for her. My daughter has a
right to live her own life in an environment in which she feels
comfortable. I created the ABCs which helped the transition
period to flow smoothly for her and the staff.
One of the first things our family had to cope with was trying
to change the relationship from child to adult. We had to deal
with the following realities:
• You are not their legal guardian after age 21;
• Letting go and allowing them to grow as much as
possible;
• Allowing them to become as independent as possible;
• Realizing that they have to function in a community no
matter what the handicap;
• My daughter required programs to fit her needs as an
adult.
It was a joy to be pleasantly surprised by the change in her
behaviour—from a person who was constantly having tantrums
to one who was not finding this necessary any more. The
happy person we see now has more confidence, a great sense
of humour and a social life more appropriate to her age.
My daughter has adjusted extremely well and enjoys her
new life. If something happens to me she is established and
settled. The last time she came home for a visit she told us she
was “just visiting.”
A professional told me, “You will find that you will need a
year of grieving after your daughter leaves home.” I said, “Why?
My daughter actually left home for a better life, and I am able to
fully participate in that life as I would with any ‘normal’ child.”
The whole family is enjoying the new turn that this situation has
brought. We are redefining our relationships for the better.
Update: In September, 2002, we discovered that our daughter had colon cancer.
After an operation and chemotherapy, we thought we were out of the woods but
it was not to be. After a valiant struggle, Stacy passed away on November 5, 2003.
We were happy that she had enjoyed her life in Sutton and the staff was caring
and respectful during her illness. Stacy’s brain was donated to the Harvard Brain
Bank for studies in autism. “Always remembered, always loved.”
This drawing of Stacy was created by Melanie (McNeice) Daley, illustrator,
computer animator and Stacy’s step-sister. Melanie chose several photos
that reminded her of happy times with Stacy and put them together in a
composite drawing for the Stacy Lynne McNeice Memorial Award. See p.
13 for the 2006 Award recipient.
15
Summer 2006 The Autism Newslink
researchreport
A Measure to Evaluate the Quality of IBI
by E. Alice Prichard
Alice is a recipient of the ASO Stimulus Grant 2004
T
he Ministry of Children and Youth Services of Ontario
has shown its support for early Intensive Behaviour
Intervention (IBI) for children with autism by providing
funding for a province-wide IBI initiative. Although it is clear
that early intervention has a positive impact on the behaviour
of children with autism, some don’t do as well as others. Some
children master many skills, including learning to talk in
sentences, playing appropriately with other children, and even
reading and writing. Other children don’t learn as many skills,
but may make great gains in other areas—learn to make eye
contact, use the toilet and follow instructions. Why do some
children respond well to treatment while others do not?
There are probably many factors that contribute to how
well a child will do in IBI. Some variables may be related to
the child, such as language level and play skills, the type and
severity of problem behaviour, and adaptive skills (going to the
toilet or getting dressed). Other factors might be related to the
involvement of parents in the IBI program at home. Better results
might happen when behaviour principles are used consistently
across environments. The training and supervision of the
therapist and the number of hours spent in therapy each week
are also points to consider. The number of hours, or quantity
of therapy that is received, is often stressed in studies about the
effectiveness of IBI. This research suggests that at least 20 hours
a week of IBI is best. Another variable that must be considered is
the quality of the intervention. Imagine
a therapist who doesn’t reinforce a child
very much or gives a reinforcer five to
10 seconds after the child’s response.
Or picture a child who always answers
correctly and is never challenged to
learn something more difficult. These
examples are aspects of quality that
probably affect how much a child
improves with treatment. Other factors
that should be considered are how clearly the request is given,
whether prompts are removed when the child knows the answer,
how organized the therapist is, whether the pace of teaching
is quick enough and how well problem behaviour is managed.
Unfortunately, it is difficult to know how to measure these
aspects and currently there is no appropriate scale that can be
used to measure the quality of IBI.
Over the past two years my colleagues and I at York University
have looked into what characteristics of IBI are important. In
2003 we sent out a survey to parents of children with autism and
professionals in the IBI field asking them to rate how important
they thought certain aspects of IBI were (such as reinforcement
and prompting). The results of this survey helped us develop
a scale to measure the quality of IBI called the York Measure
of Quality of Intensive Behavioural Intervention (YMQI). The
Descriptions of the Categories of the YMQI
Categories
SDs
Reinforcement
Prompting
Description
Clarity of verbal instructions, verbal instructions are not repeated, directing SDs while child is attending.
Differential reinforcement, sincere praise, motivating reinforcement, rapid reinforcement delivery.
Effectiveness of prompts, timing of prompt delivery, fading and augmenting of prompts, and following
through on requests, and the appropriate number of prompts per SD.
Learning
Appropriate level of task difficulty.
Pacing
Inter-trial intervals are not too long, time with reinforcement is appropriate, and a distinct inter-trial
interval exists.
Engagement
The child responds appropriately to requests.
Generalization
Wording of SDs is varied, materials are varied, tasks are mixed, teaching takes place away from the table,
teaching is embedded into naturalistic activities, response generalization, embedding reinforcement,
responding to child initiations.
Problem Behaviour Evidence of a plan, problem behaviour is not reinforced, and reinforcement of positive behaviour.
Organization
Materials are well organized and data collection does not interfere with teaching.
16
The Autism Newslink Summer 2006
YMQI looks at nine important characteristics (categories) of
good quality teaching. In each of the categories, up to eight
specific behaviours are assessed (called items). In total, there
are 30 items on the YMQI. See the table on page 16 for a list and
description of these important aspects of quality. Two scores
can be computed on the YMQI—nine category scores and one
total score (made up of all the items and categories).
Before the scale can be used in the “real world,” we must
show that it is reliable and valid. The scale isn’t useful unless
two coders who rate the same IBI session get the same results
(reliability). We also need to make sure that the items in the scale
are actually measuring quality IBI (validity). For my Master’s
thesis, I looked at the reliability of the YMQI. I trained four
people to use the YMQI in video-taped sessions of IBI. The focus
of my research involved looking at whether the coders rated the
sessions the same way on the YMQI.
The results of the research were variable. The reliability was
moderate to good for the total score and all but one category
were moderately reliable. Unfortunately, the Reinforcement
category had weak reliability. These results are not adequate
enough to use the measure practically in the field, so more
research is underway. For example, weak items have been
removed or changed and training is now more detailed to help
improve reliability.
A reliable and valid measure of quality is necessary for
evaluating staff and examining the quality of IBI programs. This
measure will help researchers to understand what the important
aspects of quality teaching are and how they affect outcome.
Identifying key features of IBI has been highly recommended
by many researchers; our research will be important to both
research and practice in the field of autism.
For further information about this research, contact Alice Prichard at eaprich@
yorku.ca or at: Graduate Psychology Department, Behavioural Sciences Building,
4700 Keele St., Toronto, ON M3J 1P3
17
Summer 2006 The Autism Newslink
10 Things
every child with autism wishes you knew
by Ellen Notbohm
S
ome days it seems the only predictable thing about it is
the unpredictability. The only consistent attribute—the
inconsistency. There is little argument on any level but that
autism is baffling, even to those who spend their lives around
it. The child who lives with autism may look “normal” but his
behaviour can be perplexing and downright difficult.
Autism was once thought an “incurable” disorder, but that
notion is crumbling in the face of knowledge and understanding
that is increasing even as you read this. Every day, individuals
with autism are showing us that they can overcome, compensate
for and otherwise manage many of autism’s most challenging
characteristics. Equipping those around our children with
simple understanding of autism’s most basic elements has
a tremendous impact on their ability to journey towards
productive, independent adulthood.
Autism is an extremely complex disorder but for purposes
of this one article, we can distill its myriad characteristics into
four fundamental areas: sensory processing challenges, speech/
language delays and impairments, the elusive social interaction
skills and whole child/self-esteem issues. And though these
four elements may be common to many children, keep frontof-mind the fact that autism is a spectrum disorder: no two (or
10 or 20) children with autism will be completely alike. Every
child will be at a different point on the spectrum. And, just as
importantly—every parent, teacher and caregiver will be at a
different point on the spectrum. Child or adult, each will have
a unique set of needs.
Here are 10 things every child with autism wishes you
knew:
1. I am first and foremost a child. I have autism. I am not
primarily “autistic.” My autism is only one aspect of my total
character. It does not define me as a person. Are you a person
with thoughts, feelings and many talents, or are you just fat
(overweight), myopic (wear glasses) or klutzy (uncoordinated,
not good at sports)? Those may be things that I see first when I
meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define
yourself. If you want to single out a single characteristic, you
can make that known. As a child, I am still unfolding. Neither
you nor I yet know what I may be capable of. Defining me by
one characteristic runs the danger of setting up an expectation
that may be too low. And if I get a sense that you don’t think I
“can do it,” my natural response will be, “Why try?”
2. My sensor y perceptions are disordered. Sensor y
integration may be the most difficult aspect of autism to
understand, but it is arguably the most critical. This means that
the ordinary sights, sounds, smells, tastes and touches of every
day that you may not even notice can be downright painful for
me. The very environment in which I have to live often seems
hostile. I may appear withdrawn or belligerent to you but I am
really just trying to defend myself. Here is why a “simple” trip
to the grocery store may be hell for me:
18
The Autism Newslink Summer 2006
My hearing may be hyper-acute. Dozens of people are talking
at once. The loudspeaker booms today’s special. Musak whines
from the sound system. Cash registers beep and cough, a coffee
grinder is chugging. The meat cutter screeches, babies wail,
carts creak, the fluorescent lighting hums. My brain can’t filter
all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the
meat counter isn’t quite fresh, the guy standing next to us hasn’t
showered today, the deli is handing out sausage samples, the
baby in line ahead of us has a poopy diaper, they’re mopping
up pickles on aisle 3 with ammonia… I can’t sort it all out. I am
dangerously nauseated.
Because I am visually oriented (see more on this below), this
may be my first sense to become overstimulated. The fluorescent
light is not only too bright, it buzzes and hums. The room seems
to pulsate and it hurts my eyes. The pulsating light bounces off
everything and distorts what I am seeing—the space seems to
be constantly changing. There’s glare from windows, too many
items for me to be able to focus (I may compensate with “tunnel
vision”), moving fans on the ceiling, so many bodies in constant
motion. All this affects my vestibular and proprioceptive senses,
and now I can’t even tell where my body is in space.
3. Please remember to distinguish between won’t (I choose
not to) and can’t (I am not able to). Receptive and expressive
language and vocabulary can be major challenges for me. It isn’t
that I don’t listen to instructions. It’s that I can’t understand
you. When you call to me from across the room, this is what I
hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come
speak directly to me in plain words: “Please put your book in
your desk, Billy. It’s time to go to lunch.” This tells me what you
want me to do and what is going to happen next. Now it is much
easier for me to comply.
4. I am a concrete thinker. This means I interpret language
very literally. It’s very confusing for me when you say, “Hold
your horses, cowboy!” when what you really mean is, “Please
stop running.” Don’t tell me something is a “piece of cake” when
there is no dessert in sight and what you really mean is “this
will be easy for you to do.” When you say “It’s pouring cats and
dogs,” I see pets coming out of a pitcher. Please just tell me “It’s
raining very hard.”
Idioms, puns, nuances, double entendres, inference,
metaphors, allusions and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It’s hard
for me to tell you what I need when I don’t know the words to
describe my feelings. I may be hungry, frustrated, frightened
or confused but right now those words are beyond my ability
to express. Be alert for body language, withdrawal, agitation or
other signs that something is wrong.
Or, there’s a flip side to this. I may sound like a “little
professor” or movie star, rattling off words or whole scripts
well beyond my developmental age. These are messages I have
memorized from the world around me to compensate for my
language deficits because I know I am expected to respond when
spoken to. They may come from books, TV, the speech of other
people. It is called “echolalia.” I don’t necessarily understand
the context or the terminology I’m using. I just know that it gets
me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually
oriented. Please show me how to do something rather than just
telling me. And please be prepared to show me many times. Lots
of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my
day. Like your day-timer, it relieves me of the stress of having
to remember what comes next, makes for smooth transition
between activities, helps me manage my time and meet your
expectations. Here’s a great website for learning more about
visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/
str11.htm.
I won’t lose the need for a visual schedule as I get older, but
my “level of representation” may change. Before I can read, I
need a visual schedule with photographs or simple drawings.
As I get older, a combination of words and pictures may work,
and later still, just words.
7. Please focus and build on what I can do rather than what
I can’t do. Like any other human, I can’t learn in an environment
where I’m constantly made to feel that I’m not good enough
and that I need “fixing.” Trying anything new when I am almost
sure to be met with criticism, however “constructive,” becomes
something to be avoided. Look for my strengths and you will find
them. There is more than one “right” way to do most things.
8. Please help me with social interactions. It may look like
I don’t want to play with the other kids on the playground,
but sometimes it’s just that I simply do not know how to start
a conversation or enter a play situation. If you can encourage
other children to invite me to join them at kickball or shooting
baskets, it may be that I’m delighted to be included.
I do best in structured play activities that have a clear
beginning and end. I don’t know how to “read” facial
expressions, body language or the emotions of others, so I
appreciate ongoing coaching in proper social responses. For
example, if I laugh when Emily falls off the slide, it’s not that I
think it’s funny. It’s that I don’t know the proper response. Teach
me to say “Are you OK?”
9. Try to identify what triggers my meltdowns. Meltdowns,
blow-ups, tantrums or whatever you want to call them are even
more horrid for me than they are for you. They occur because
one or more of my senses has gone into overload. If you can
figure out why my meltdowns occur, they can be prevented.
Keep a log noting times, settings, people, activities. A pattern
may emerge.
Try to remember that all behaviour is a form of communication.
It tells you, when my words cannot, how I perceive something
that is happening in my environment.
Parents, keep in mind as well: persistent behaviour may have
an underlying medical cause. Food allergies and sensitivities,
sleep disorders and gastrointestinal problems can all have
profound effects on behaviour.
10. I f you a re a fa m i ly member, plea se love me
unconditionally. Banish thoughts like, “If he would just…”
and “Why can’t she…” You did not fulfill every last expectation
your parents had for you and you wouldn’t like being constantly
reminded of it. I did not choose to have autism. But remember
that it is happening to me, not you. Without your support, my
chances of successful, self-reliant adulthood are slim. With your
support and guidance, the possibilities are broader than you
might think. I promise you—I am worth it.
And finally, three words: Patience. Patience. Patience. Work
to view my autism as a different ability rather than a disability.
Look past what you may see as limitations and see the gifts
autism has given me. It may be true that I’m not good at eye
contact or conversation, but have you noticed that I don’t lie,
cheat at games, tattle on my classmates or pass judgment on
other people? Also true that I probably won’t be the next Michael
Jordan. But with my attention to fine detail and capacity for
extraordinary focus, I might be the next Einstein. Or Mozart.
Or Van Gogh.
They had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life
—what future achievements from today’s children with autism,
children like me, lie ahead?
All that I might become won’t happen without you as my
foundation. Think through some of those societal “rules” and
if they don’t make sense for me, let them go. Be my advocate,
be my friend, and we’ll see just how far I can go.
Ellen Notbohm is author of the book Ten Things Every Child with Autism
Wishes You Knew, winner of iParenting Media’s Greatest Products of
2005 Award, and a ForeWord 2005 Book of the Year finalist. She is coauthor of 1001 Great Ideas for Teaching and Raising Children with
Autism Spectrum Disorders, winner of Learning Magazine’s 2006
Teacher’s Choice Award, and a columnist for Autism Asperger’s Digest and
Children’s Voice. Your comments and requests for reprint permission are
welcome at [email protected] . For more information please
visit www.ellennotbohm.com.
A Great Resource
Autism Ontario is pleased to offer our new manual, Living with ASD - Adolescence and Beyond.
This great resource is for anyone interested in information about teens and adults on the autism
spectrum. Resource information, tips and stories are written by parents, professionals and
individuals on the autism spectrum. This manual provides information on a variety of topics
including: • Social skills
• Person-centred planning
• Getting a diagnosis as an adult
• Safety in the community
• Sexuality
• Financial planning
• ODSP
• Making Employment work
• Sensory Impairments
Order form online at www.autismontario.com or by calling 416-246-9592 Ext. 227.
19
Summer 2006 The Autism Newslink
feedback
“Kids Grow Up” Advocacy Kit
I
was very disappointed to hear the negative reactions from some
people in the autism community regarding Autism Ontario’s
Advocacy Kit…
Adult issues were identified as a key area of focus in Autism
Ontario’s Strategic Plan, and the Advocacy Kit was just one piece of
work that was developed by a group of hard-working and dedicated
volunteers… in support of a segment of our ASD population that no
one can argue, has been under-served for many years. ...Since 1991
when the last study [on Adult issues] was done... I’m sure most people
would agree that we haven’t moved the dial very far at all!
…[Autism Ontario] has always been, and will continue to be, an
organization that supports individuals with ASD and their families,
regardless of age. When I look at my 11-year-old son Nicholas, I am
amazed at how quickly the years have flown by. [In the] nine years
since he was diagnosed ...lots has happened to raise awareness for
autism, and while our job is far from done, what really concerns me
these days is how quickly the next nine years will fly …Nicholas will
be entering his adult years. What will be available to him then?
Deborah Kitchen, Board President, Autism Ontario
I
add my voice to those who have been expressing their grave
concerns about the content of the “Kids Grow Up: Teens and
Adults on the Autism Spectrum Advocacy Campaign Kit”…
I have no problem with the statement that “Kids Grow Up.
They do. My own son is going on six and I know that he will
grow up too. Will he need supports later on? Undoubtedly. And
these supports will include IBI/ABA. If he will benefit from IBI
at age 50, why not?
…Discussion is vital to shaping our goals—certainly, but the
discussion has to be meaningful and respectful. The Reynolds
article is provocative and unhelpful—no one would argue that
teenagers and adults with autism do not need support. Saying
that IBI has “hijacked” our efforts is not the way to get those
supports. Another member of our community has made the
following analogy and I will repeat it—would the Canadian
Diabetes Society ever consider putting forward the argument
that the emphasis given to juvenile diabetes drains resources
away from services for adults with diabetes? Certainly not, but
this is exactly what the Reynolds article advocates. Obviously
this is part of a broad package—it includes IBI for all who need
it regardless of age, as well as other appropriate supports…
Robert J. Shalka, Orleans, ON
s one of the founders of the Ontario Autism Coalition—a very
vocal parent group holding rallies province-wide since May,
2005—I wanted to clarify the purpose of these rallies and the beliefs
of all five founders of OAC. We found the recent “backgrounder”
included in Autism Ontario’s Advocacy Kit very insulting:
“…there are not enough resources for adults living with autism. I
give the example of my friend whose son with ASD is almost 19. She
has been told that she may have a bed for him in a group home in
20 years—until then, good luck.” This is unacceptable, as everyone
would agree. We stress that by giving our children with ASD an
appropriate education, they will need less supports when they grow
up, and there already needs to be an overhaul of the system (or lack
thereof) in place for adults…
A
20
The Autism Newslink Summer 2006
…When a parent with an adult child goes to his/her MPP to
advocate for that child, the official will already have some knowledge
of ASD and the challenges families face due to OAC insisting that
the public take notice. Instead of making negative statements about
“hijacking the ASD agenda,” possibly the time and energy put into
this negativity could have been utilized in advocacy. We would
welcome more volunteers to our group, as we wish to work together
for a brighter future for all individuals with autism.
Susan Fentie, Ontario Autism Coalition
O
ne of the many things I have been observing in the recent
newsgroup-based debate about the Adult Advocacy Kit is
how the different stages of life with ASD may have played a role.
This is hardly rocket science: life moves in a forward direction,
and at any given time we are in a particular, if not particularly
distinct, phase of life. Looking backward on our lives is not
difficult—we may feel embarrassment, or compassion, or envy
for our younger selves, but those selves are safely in the rearview
mirror. Forwards, however, is a more difficult direction in
which to cast our gaze. Recall the old joke about how stupid
our parents were when we were 16, and how much smarter
they are now that we’re 35. Think about what you thought you
would be doing with your life by now, and what you are actually
doing. Even if you are one of those mysterious people who are
living exactly the life you had anticipated, I strongly doubt your
current reality, however well foretold, is being experienced in
the same way you envisioned.
...So it is with those of us whose loved ones have ASD—
perhaps to an even greater degree. Parents of young children
on the spectrum simply cannot project their child’s life forward
10 or 20 years. For one thing, no expert has told them what
the future will hold—anything is possible. What’s more, they
can’t afford to project forward too far while actively, even
passionately, pursuing interventions that they believe, hope, or
trust will make that future immeasurably different from what
it might have been.
As parent advocates, we should strive to represent the needs
of everyone on the spectrum. However well-intentioned, though,
we still operate in the world that we know, living the reality that
forms our opinions. We look backward, not entirely without
pain, to envision what the younger versions of our children
needed. But to look forward—ah, there be dragons. To advocate
for supportive housing, when we are working day and night
to ensure independence? To advocate for disability pension
funding, when we are committed to our children pursuing
careers? When we perhaps believe that our children can recover
or be cured from their disability? That is a challenge indeed.
I have noticed that when parents of children with ASD meet,
they typically inquire, directly or indirectly, about the other
child’s position on the spectrum. I think we do that because it
helps us recognize the challenges that person might be facing,
even if those challenges are not our own. We do a fairly good
job of recognizing another parent’s stage in life’s journey, and
respond accordingly. However, we all could do more to recognize
how our current stage affects how we react to messages from
others, how the messages we receive are naturally, inevitably,
filtered through the lens of our lives. We can’t own our reactions,
but if this “community” is ever to be established, surely we must
learn to take ownership of our responses.
Laurie Pearce, Toronto
Around the Province
bookreview
with
Autism Ontario
Chapter Highlights
D
uring the summer months, many chapters either run
summer camps or support families who send their
children to camps. The Ottawa Chapter is supporting
a new and different camp.
“‘New Camp Leo” launches a pilot project.
RIAS – Reverse Integration Asperger Syndrome Camp is a
model whereby volunteer children and adolescents from the
community at large, will be paired with Camp Leo’s participants
with Asperger Syndrome encouraging mutual friendships and
rewarding social interactions.
A number of pre-teens and teens have already shown great
interest in joining as Peer Buddies Volunteers. Prior to the onset
of camp, Peer Buddies will undergo training by an experienced
specialist in the area of Reverse Integration. Then the Reverse
Integration expert will conduct weekly “socialization skills”
classes during camp.
Participants with Asperger Syndrome will also be surrounded
by knowledgeable staff, who are caring and very sensitive to
their needs. Campers with Asperger Syndrome will be given
every opportunity to make lifelong friendships not only with the
Peer Buddies but with other campers with Asperger Syndrome
as well.
Durham Chapter is offering an opportunity of dinner and
theatre for families, friends and anyone interested in a night
out. On July 16, Class Act Dinner Theatre presents “Death Trap”
and a portion of the proceeds will go to Durham Chapter. Enjoy
the evening.
Children with special needs and their families in the
Peterborough Chapter can enjoy a morning of free rides,
lunch and fun at the Peterborough Exhibition. Thanks to the
Peterborough Agricultural Society for offering this wonderful
opportunity.
My Favourite Place
by Chip Lobay
My favourite place is the quiet area at daycare.
I go there when I’m being teased by kids.
I see kids playing.
I see kids doing their homework.
I hear kids having a good time at the Lego centre.
I hear the two computers operating.
I feel safe.
Chip is a 10-year-old with PDD-NOS. In this short, simple poem, she
has really captured how important that a “safe” place is for a child with
autism.
GUNS A’ BLAZING: How parents of children on the
autism spectrum and schools can work together – without
a shot being fired by Jeffrey Cohen
reviewed by Robert Gauthier, Clinical Supervisor, M.Ed., M.Sc.
I
n this book, the author
gives parents ammunition
to assist them in dealing
with the school system. It’s not
about how to be aggressive
and demanding with schools;
rather, it’s about how to keep
those guns in their holsters
a nd use mor e a sser t ive
and educated approaches
when dealing with schools.
Although his advice is based
upon A merican law and procedure it can
be interpreted within the Ontario school policies and
procedures.
Essentially he recommends that parents go to schools armed
with information about the special education process, the
documentation required, and the services/resources which exist
within a district. He points out that schools are not infallible
but neither are parents. When schools and parents come at
each other with “guns a’ blazing” the result cannot be good. He
argues that if parents approach the school in an assertive but
restrained manner, the results can often be positive. He suggests
using the metaphorical guns only when parents have decided
carefully—not reacted—that there is no other option. Even then,
he advises keeping the “attack” positive by putting everything
in writing, keeping your manner professional and limiting the
attack to the specific incident which drew out the guns.
There’s lots of valuable advice and information in this book.
Even readers who don’t enjoy his metaphorical humour can
easily get past that to acquire some valuable advice for how to
deal effectively with the school system as the system deals with
them. Parents who read this book see that although there are
some horror stories, there are also some truly wonderful stories.
Sometimes it’s the approach that’s taken which determines the
outcome. The author offers sage advice, largely from his own
experiences of having a son with ASD. His best and final advice
is to keep the guns holstered …unless absolutely necessary.
ISBN 1921282862, Autism Asperger Publishing Co., January 2006. Available at
Parentbooks, www.parentbooks.ca for $24.95.
21
Summer 2006 The Autism Newslink
Lessons Learned in Supporting Individuals with Autism Spectrum
Disorder (ASD)
by Glenn M. Rampton, C.D., Ph.D., C.Psych.
I
have been in this movement for more than 35 years as a
parent, volunteer, staff member and professional. You’d
think that this would mean that my family and I would really
have it together in knowing how to support my daughter with
a diagnosis on the autism spectrum, wouldn’t you?
Well, I have a confession to make. My wife and I are not
totally consistent in the way we have applied professional “best
practices” in supporting our daughter.
As a professional who may only see individuals and their
families irregularly, it is relatively easy to be prescriptive on what
parents should be doing. Staff may be a bit more sympathetic
with the difficulties of follow-through since they support the
individual for whole shifts at a time.
Parents of children living at home may face significant
challenges 24 hours a day, seven days a week. Follow-through
and consistency, while necessary, can be very hard indeed. This
does not lessen the requirement to keep on trying to do our
best; it is just an acknowledgement that we can’t all be perfect
all the time.
Separating Fad, Fact and Fiction
Another confession has to do with adopting fads which have
been put forward as “cures” or at least “effective treatments”
on the basis of anecdotal evidence. As parents, we have been
known to try new “treatments” or “cures” that seem to have
helped others—megavitamins with magnesium, gluten or
casein–free diets—even, I am a bit hesitant to admit, facilitated
communication.
With the possibility of multiple origins for autism, it might
well be that some interventions help some individuals greatly,
but not others. Therefore, I see nothing wrong with families
trying new things, so long as this is done with a reasonable
amount of caution.
In fact, I freely admit that we have tried things as a family that
I would not support as a professional, or would not authorize for
funding as head of a government sponsored “transfer payment
agency.” While it is the prerogative of parents to want to ensure
that their child has every advantage to the best quality of life,
I firmly believe that this must be tempered with caution that
can only come from well-researched evidence, especially when
there is potential risk to the individual or others.
In my practice as a psychologist, and as the Chief Executive
Officer of a large organization specializing in supporting
individuals with ASD, I have seen great harm done to individuals
whose families have too wholeheartedly adopted one fad or
another in the hopes of a cure. This includes families who have
insisted that psychiatric medication be stopped to implement a
naturopathic or other such approach.
Psychotropic Medication
At Kerry’s Place Autism Services (KPAS), we believe that one
should continually strive for the least and most appropriate
22
The Autism Newslink Summer 2006
psychotropic medication for the best quality of life. The fact
is, medication prescribed by a psychiatrist has generally
been well-researched and is administered under controlled
conditions with known side effects. The same is not generally
true of naturopathic approaches. It is also not true, of course,
for medication that some medical doctors prescribe that has
not been well-researched for the specific purpose for which the
prescription is written. This is not to say that such “off-label”
prescription, naturopathic or herbal approaches do not work for
some people, however; just that the likely outcomes or potential
side-effects are not as well determined.
Behavioural Modification – Whose Behaviour?
For many years my wife and I tried to modify our daughter’s
behaviour to be what we wanted it to be, that is, to appear
more normal. Being a psychologist and my wife a special needs
teacher, we tried most “state of the art” behaviour management
techniques of the time. As our daughter got older she was less
Some ways we’ve learned to understand the
individual with autism are:
1. Ask the individual. It is important never to underestimate the
ability of the individuals to tell us (verbally or non-verbally)
how to help them better. Active listening not only involves our
auditory sense but must also include watching, following and
interacting. Active listening leads to formulating an understanding from a variety of perspectives (i.e., Just because I can’t
talk doesn’t mean I don’t have something to say).
2. Listen to those who know the individual, including family,
friends, and present and previous service providers.
3. Have qualified personnel conduct functional analysis of behaviour to determine the function that a particular behaviour has
in getting something the person wants, or avoiding something
that he or she don’t like or want.
4. Watch the individual and follow his or her lead with patience
and tolerance. Too often we assume we know better than the
person and try to redirect him or her rather than following to
see what they will tell or show us.
5. Provide the individual with an increased and wide range of opportunities for new experiences. Be careful to not assume that
the person with ASD cannot handle new experiences, although
they may have to do it on their terms and at their pace. Many
individuals we support have had very limited positive opportunities and experiences for personal growth and enhancement of self-esteem. Often as we provide opportunities for
new places and experiences, we learn a great deal about the
individual’s skills and interests of which we were unaware.
willing or less able to conform to our expectations. She began
to communicate her dissatisfaction through aggression, selfabuse and property damage. This in turn led to the vicious
circle familiar to many individuals with ASD and their families
in which various psychotropic medications were used to help
our daughter and us deal with the many challenges that we were
experiencing with each other.
It was only when we began to back off, and let her be what
she was prepared or able to be that these challenging behaviours
diminished.
In recent years we have gone through a similar evolution in
Kerry’s Place Autism Services in which we
are much more cautious about intrusive
behaviour modification techniques,
including medication. We now spend
more time analyzing what function the
person’s behaviour has for him or her, then
tailoring environmental circumstances to
the needs of the individual, and helping
him or her develop alternate means of
communicating what he or she wants or
needs and providing the means for him or
her to achieve these wants or needs.
One of the key things that we have
learned in recent years is that it is critical
to gain common understandings when
planning for and supporting individuals.
These common understandings must be
shared by the individual with ASD, their
family (both immediate and extended),
friends, and direct service providers—professionals such
as occupational therapists, speech and language therapists,
psychologists, psychiatrists, other medical professionals—and
funding agencies. This is best done in the context of what has
come to be referred to as the biopsychosocial approach in which
the individual, his or her support circle, staff and professionals
share information and work together to understand and deal
with medical, environmental and behavioural challenges facing
the individual.
sometimes successful in getting what they want. Obsessive
compulsive disorder and other types of behaviour may have
been adopted as ways of temporarily reducing stress, or of
satisfying particular sensory needs. Without truly understanding
the person, the response from support providers is often
inconsistent, delayed and unrelated to the wants or needs of the
person with ASD. The individual may be ignored, punished or
rewarded for the same behaviour at different times, by different
people sending mixed messages. The resulting confusion, fear
and anxiety are felt most acutely by the individual and may
pervade the support environment. Chronic stress and anxiety
can lead to depression and other
psychiatric conditions, especially if
there is a genetic predisposition for
these conditions.
“It was only when we
began to back off, and
let her be what she was
prepared or able to be
that these challenging
behaviours diminished.”
Understanding the person
The first and most essential principle in supporting people
in challenging situations is to listen, and to work hard at
understanding the individual with ASD. This is fundamental to
overcoming barriers to effective communication.
If difficulties have existed in the individual’s life for a
long time, he or she may have become increasingly frustrated
and learned that aggression and self-injurious behaviour are
Building on strengths of the
person: focus on changing the
environment and support approaches rather than trying to
change the person
Another key principle is to build
upon the strengths of the person.
People with ASD have taught us that
we often misidentify the underlying
reasons for their behaviour. Through
experience we have learned that it
is generally more effective to identify
and treat complex needs, modify
environments and attempt to change difficult circumstances,
rather than to try and modify the individual’s behaviour in the
absence of these other considerations.
Development of common understandings across all
parties involved
Trust and teamwork between families/support circles, agency
members and professionals can, at times, be difficult to foster
and maintain, particularly if there is a history of difficulties
and mistrust between family and service providers. A sound
basis for developing trusting, working relationships between
members is the declaration and acceptance by all that they share
a common goal—to support the individual with ASD to have
the best possible life.
The Autism Newslink is a publication of Autism Ontario. Members of Autism Ontario automatically receive a
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23
Summer 2006 The Autism Newslink
Living
with ASD
Adolescence and Beyond
w!
o
N
e
labl
i
Ava
Helping people on the
autism spectrum navigate
to and through adulthood