Autism Now - Autism Edmonton

Transcription

Autism Now
Fall 2008
volume 21, number 3
AUTISM SOCIETY OF EDMONTON AREA
www.autismedmonton.org
BOARD OF DIRECTORS
EXECUTIVE
PRESIDENT
VICE PRESIDENT
TREASURER
SECRETARY
PAST PRESIDENT
Terry Harris
Ryan Guenter
Jackie Ryan
Jean Ashmore
Dr. Deborah Barrett
DIRECTORS
Susan Angus
Brian Hunt
Shane Lynch
Charlene Prochnau
Dr. Keith Goulden
Mark Lynch
Karen Anne Moore
Alan Wagner
Articles, opinions and events in this publication do not
necessarily imply the endorsement of the Autism Society
of Edmonton Area and are printed for information only.
The editors of Autism Now are Deborah Barrett and
Roman Sokolowski.
The Autism Society of Edmonton Area is a non-profit
organization founded in 1971 by a concerned group of
parents and professionals. The Autism Society of
Edmonton Area helps families and communities
embrace and support people on the autism spectrum
throughout their lives.
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#101, 11720 Kingsway Avenue
Edmonton, AB T5G 0X5
780-453-3971 / 780-447-4948
email: [email protected]
website: www.autismedmonton.org
Ad rates are as follows, please phone
the society for ad placement
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President’s Message
On the Wings of Hope:
Discovering the Gifts Within
Terry Harris
As we commence our new program and
activity year, I am delighted to be working
with a small team of very capable and
hardworking staff, as well as an engaged
volunteer board. We are planning a number of initiatives for
our 2008-09 year. But first let’s consider some achievements
and activities that took place over the summer.
But why do we do all this? Why is it important?
Below is a recap of a recent news story. Although this story
occurred in the US, it speaks to us about the gifts within, about
strength of spirit and of love. It is an example of that which
inspires us to serve. It is a true story of a father and son who
were swept out to sea.
The son, Christopher Marino, thirteen years old, deeply affected by
autism and virtually non-verbal (but for a few catch phrases, drawn
from his favorite movies), was swimming at a beach in Florida when
• Our annual Summer Program was very well received by the he was suddenly pulled out to sea by a rip current. His father, Walter,
families involved, with a significant increase in participants. realizing the seriousness of the situation, swam to rescue his son. But
• Our efforts in Crisis Support helped many families through the current was too strong and the two swimmers were drawn further
and further from the safety of shore… with no life preservers.
some tough situations.
• Our active support and involvement in the recent
Inaugural Walk for Autism, collaborating with Autism
Speaks. The event drew more than one thousand
participants, raising awareness in our community and
raising funds for the research initiatives of Autism Speaks.
• Our preparations for our research collaboration with
VRRI regarding the transition experience of young adults
with developmental disabilities from high school
to adulthood.
• Our Advocacy work which, among other things, achieved
a sustainable solution and reconciliation after an incident
at a local restaurant, offering support for both the parents
and the restaurant company.
In addition to our ongoing programs and services, planning
is underway for an active year, including, among other things:
• Parent and Teacher Information Nights
• Autism Collaboration Teams (these are community
collaborations for both Children and Adults)
• Annual Children’s Christmas Party
• Oilers 50/50 fund raiser
You’ll see details of these and other initiatives throughout this
quarterly edition of Autism Now.
Before long, both Christopher and Walter had drifted out of sight
from another family on the shore who, having witnessed the
unfolding drama, rushed off to call the Coast Guard. As Walter
reached his son, he realized that Christopher was giggling, with
“no concept of fear or fear of death.” Christopher’s calm, even
playful response to the situation settled his father, who was
understandably very distressed.
In light of Christopher’s very limited verbal skills, they
communicated as best they could, hoping that help would soon
arrive. “To infinity!” yelled the father, quoting a phrase from one
Christopher’s favorite movies, Toy Story. “And beyond!” responded
Christopher with a pump of his fist, like the animated character
in the movie. These few phases were the limit of Christopher’s
communication, taught to him by his family to support
Christopher’s efforts to build his verbal skills. On that day,
those simple phases may have been his lifeline.
Unfortunately, as night fell, there was no sign of help. The Coast
Guard had suspended the search until morning. Now it was just the
two of them, and soon the situation would become even more grave.
In darkness, amidst the six-foot waves, and despite their best efforts,
father and son soon began to drift apart.
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Within a short time, having lost sight of Christopher, in an
effort to keep voice contact, Walter continued to initiate the
phrases that he knew would elicit a response. But over the course
of an hour Christopher’s responses faded as he drifted away…
until they finally ceased.
“I thought I had lost him,” noted Walter, knowing the depth of
Christopher’s dependence on the love and care of others, and sensing
his own fatigue. Despite his sense of loss, Walter refocused his
attention and energy, changing from despair to survival. He
knew that he had to make it through the night without help.
At daybreak Walter heard the sound of a motorboat. Waving
frantically, he was finally spotted and rescued by a group of
fishermen, but they had heard nothing about Christopher.
Soon the Coast Guard arrived, but again there was no word
of Christopher’s fate.
It was two hours later— close to fourteen hours after he was swept
out to sea, and almost eight hours after he was separated from his
father and left drifting on his own— that Christopher Marino was
rescued. His first word: “Cold!” At the time of his rescue he was over
seven miles from shore, and over three miles from where he and
his father had been separated the night before. Both Walter and
Christopher were airlifted to hospital and were subsequently
released back to the loving embrace of family.
For now, Christopher can not fully communicate what he
experienced and how this thirteen-year-old boy with autism
managed to survive for fourteen hours swimming on his own in
the Atlantic Ocean without a life preserver. Christopher’s family
continues to hope that, one day, he will be able to express his
experiences from his own frame of reference.
Truly an amazing story!
I recall this powerful, true story as an analogy to how many of
us feel when we first hear that our child, sibling or loved one is
diagnosed with autism. We are pulled quickly and unexpectedly
from our safest harbours. We are out of control, feeling helpless
and alone. We find ourselves swimming against the current to
support those we love.
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But at the same time, the story speaks of the strength and
resilience that exist inside us all: the hidden gifts and dignity
within even the most unassuming and vulnerable, and the
strength so far beyond what we might expect. That intangible
“essence” that defines character, summoned to serve us in the
most dire situations, and which can be fortified by the challenges
we face as we remain ever hopeful.
The story speaks to the fact that despite our misgivings and
feelings to the contrary, we are not alone: others want to help.
Their support may not always come in the form or at the time
of our choosing, but we are part of a community of caring.
And in that communion there is support, power and authority
if we recognize it, organize it and harness it.
The Autism Society of Edmonton Area plays an important role
in “helping families and communities embrace and support
people with Autism Spectrum Disorders throughout their lives.”
We strive to realize this goal by focusing our attention on four
core areas: Programs and Services; Collaborations and Advocacy;
Community Awareness and Education; and support for research.
As you read this issue of Autism Now, you’ll see many initiatives
and good works being organized and carried out for the benefit
of our members and community by our excellent staff and by
our phenomenal volunteers. It is clear that the important work
of our Society is possible only through the active engagement
and support of our members and volunteers.
We’d like to thank both new and returning board members for
their active support (as well as those who have served in past),
and we extend a huge thank-you to those who are contributing
as volunteers and those who continue to support our efforts
through their membership. As you can appreciate, we encourage
active and sustained participation and involvement in the ASEA,
so please let us know if you’re interested in helping out.
The need is great, but the opportunity to make a difference in
the lives of the more than 7,000 families in our community who
are touched by autism is “Here” and “Now”.
Attention: All Hockey Fans
The Oilers Community Foundation has granted the
Autism Society of Edmonton Area an evening to sell
50/50 tickets. ASEA will be selling tickets during the
March 12, 2009 game between the Edmonton Oilers
and the Atlanta Thrashers.
We will need up to 65 volunteers for a fun-but-busy
March evening of hockey and fundraising, so please
help us make it a successful evening for the ASEA.
Please e-mail [email protected]
or call the ASEA office at 780-453-3971 if you would
like more details.
Education Matters
What is “Special Education”? (Part 1 of 2)
Karen Bain
What is “Special Education” and what makes a particular
education “special”? This question eludes a simple, concise
answer. Special education is often confused with the
classroom where a student having special educational needs
is placed, when it should really be understood as the
specialized programming provided.
Because of the evolving nature of public education, increased
diversity of students in general education classrooms, and a
focus on inclusion for all students, schools are seeking ways to
best meet individual educational requirements of students who
have diverse social, cognitive, physical, sensory and behavioural
needs. How to best program for, as well as individually support,
students who are not participating successfully at their grade-level
academic curriculum is an ongoing challenge for educators.
A parent recently mentioned that she had refused to have
her daughter in “special education”. Literature and speakers
advocating “full inclusion” often make negative references to
“special education”. Further discussion, however, usually results in
identifying basic misunderstandings. Students with special needs
are those who require changes to regular curriculum, additional
adult assistance, different instructional or evaluative strategies,
and adapted materials and/or resources to facilitate learning.
Special Education is not a place. Special education is
programming designed to match student priority goals and
objectives, and the knowledge, skills, attitudes and values
that need to be taught, with the strategies, opportunities, and
processes necessary for individual students to learn. Special
education is an instructional program, not a particular classroom
or chair. Special education programming should be monitored
and revised according to the results obtained by effective,
ongoing assessment and evaluation of student progress,
not by philosophical orientations.
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Two learning experiences this summer provided me with an
opportunity to read and further reflect upon inclusion and the
complexity of designing appropriate programs for individual
students having special educational needs: one was a one-week
course related to adapting typical curricula for students having
developmental disabilities, and the other was the opportunity to
review some recent resources related to curriculum for students
with disabilities. This review provided an excellent opportunity to
compare recent literature, both in regular curriculum adaptation
and in the design of highly individualized one-on-one curriculum
planning, by reading a discrete trial curriculum resource.
Reading this literature raises a number of questions. First, it seems
essential that instruction for students with special educational
needs must be individualized for each student, with a focus
on both the regular curriculum content (Program of Studies)
and the instructional processes to be used (Accommodations
and Strategies). Secondly, if “special education” evokes the
connotation of placement rather than programming, or has
acquired a negative connotation, perhaps the term should be
replaced by terms such as “student-based programming” or
“specialized program planning” for individual students who
require support to access the typical curriculum.
Unfortunately, there is sometimes the assumption that placement
in a regular classroom will automatically result in learning
knowledge and skills necessary for the future. Placement of a
student with special education needs in a regular classroom is not
“inclusion”. Social inclusion and subsequent academic learning
cannot be left to chance, no matter where a student is placed.
Questioning what, why, how, and when to teach should result in
the best match between student needs, learning outcomes, and
the potential to ensure opportunities for maximum participation
in current and future environments.
The following questions are designed to stimulate decision
making regarding inclusion practices for individual students.
Reflecting upon the ten areas listed may be useful at the
beginning of a school year when teachers are establishing their
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learning team and beginning to create effective Individual
Program Plans for identified students.
1.How will a collaborative “learning team” be established?
Who should be involved and what will the general process,
meeting schedule and expectations of this team be? The
Individualized Program Planning and the Learning Team:
A handbook for parents of children with special needs, both
Alberta Education resources, are useful for planning and
considering options. Both resources discuss the need for
understanding the student, understanding the environmental
and social demands of the school, assessing student strengths
and challenges, and creating more options for interacting
with others and participating in the experiences of a school
or classroom. It is extremely difficult for a teacher, working
alone, to have sufficient time and/or expertise to answer
comprehensive questions of that nature. Furthermore,
parents differ in their expectations and understandings
of the school program, and must play an advocacy role
for their own children.
A core learning team should be created, including parents
or home caregivers, teachers, educational assistants and
the school special needs coordinator and/or administrator.
Although parents and one teacher may have a good
relationship during one school year, including another school
staff member leads to greater consistency and continuity of
programming. A second tier of supportive individuals who
know the student well can provide occasional attendance and/
or information. This group may include peers, additional
teaching staff, lunch supervisors, bus drivers, consultants
and other community individuals who can contribute to a
comprehensive program plan.
It is extremely important for school staff to have clear
transition planning in place. Staff and parents will know,
in advance, what is to be accomplished by the end of the
school year. Teachers should not be “starting over” each
year with a student who has special education needs. Each
school year should build on learning from the previous
school year. Successes, goals and objectives currently being
worked on and parent expectations should be shared prior to
the development of the student’s individual program plan.
The IPP materials from Alberta Education provide clear
suggestions in this regard.
2. What form of assessment and observation can be used
to establish priorities for goal setting? What will be
used to establish current and long-term performance and
achievement? What methods will be used to gather facts about
the learner and to base instructional decisions on data-based,
rather than subjective, information? Have formal assessment
measurements been recently performed that may be useful as
part of the observation and context based assessments? What
environments is the student currently participating in, and
what are the requirements or skills needed to be successful?
Would the use of ecological inventories and discrepancy
analysis be helpful? What skills and competencies would make
participation more likely? One strategy reviewed (Thousand,
J.S., Villa, R.A. and Nevin, A.I., Differentiating Instruction:
Collaborative planning and teaching for universally designed
learning. Corwin Press, 2007) is to use the identification of
strengths as a first step. An adapted form such as the following
might be helpful as a structure for the first meeting of a newly
created learning team.
Facts about the student
Strengths/preferences Likes/avoidance
Working toward
Facts about the Environment
Might include social, physical, academic and/or
behavioural expectations
Suggestions/
Strategies which have been successful in the past
Action Plans
What specifically will be tried/continued or worked on
Next meeting will be:
3. What process and timelines will be used to establish an
Individual Program Plan that clearly indicates student
strengths, preferences, interests, successes and any other
information that provides the basis on which to teach the
student? What are the most effective, efficient procedures
for program planning? Although concerns and needs
are important to identify, a student-deficit philosophy
can be problematic for several reasons. Teachers who are
new to including students with special needs may have
misinformation and preconceived ideas, which become
barriers to knowing students individually. Labels such as
“Severe Autism” or “Developmental Disabilities” sometimes
carry emotional loadings which can become barriers to a
welcoming attitude and may do little to create appropriate
program plans. On the other hand, not identifying disabling
conditions can also be problematic at times. For example,
seizure disorders, visual difficulties, hearing problems, and
severe communication problems could, if ignored, create
health and safety risks. Are goals and objectives specific,
measureable, realistic and contextually relevant? Do the
individual program goals reflect both academic and
functional long-term goals? Are the accommodations
directly related to the needs of the student? For many
student having special needs, for example, social goals
are extremely important. How are they integrated into
curriculum goals and are they ongoing?
4. How could maintaining general inclusive teaching
strategies be enhanced in this classroom? Would it be
helpful to provide the teacher with a recent article or resource
related to differentiating for all students? How can school
staff be supported to use different visual strategies, provide
kinaesthetic experiences, allow active movement, and assess
through authentic or rubric forms of evaluation? According
to the literature on differentiated instruction, modification of
the content (what is taught), modifying the process (how it
is taught) and modifying the product (the outcome) form a
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useful model when attempting to differentiate instruction.
It may be much easier to accommodate and teach to
the needs of individual students, no matter what their
diversity may represent, in a classroom already using a
variety of learning methods and materials.
This article will be continued in the next issue of Autism Now,
concluding with six more questions designed to stimulate decisionmaking regarding inclusion practices for individual students.
[email protected]
Autism Inside Out: Into a New World
Ian Wetherbee
Contributed by Gail Gillingham Wylie
Agape is a Greek word for love used in the Bible. This
one word captures the true nature of the home where
I now live with my parents. It is also the name of the house
where I finally spent four days apart from my family,
the Agape House.
No one wants to live at home forever. There is a time most
people leave, either when they go to college or get married
or strike out on their own. Not me. At the age of thirty, I’m
still happily living with my family. Very rarely have I stayed
any length of time anywhere without someone from my
immediate family nearby. I know that can’t be the case forever.
My dad will retire in a few years and both of my parents want
to spend some time during the winter in the south. They love
to bring me along when they travel, but my autism waiver
precludes me from spending long periods of time outside of
Indiana. Each day draws us closer to that time when my living
arrangements need to change, and my two visits to the
Agape House gave me some valuable insights into what
the future may hold.
The Agape House is a well-run facility where children with
disabilities can stay when their parents are away from home
or just need a break from their parental responsibilities. It is
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just a respite center— no one lives there permanently. But it isn’t
home, either, and when I stayed there, I was totally disconnected
from my family. My first stay lasted one day, by design, and my
second stay was for four days, again by design. Both I and the
Agape House survived the experience. My parents also survived.
Normal routines didn’t exactly get followed. I was more mobile
and larger than their typical visitor. I went to bed much later
than the other guests. Sometimes rigid routines of mine didn’t
happen, and I found it hard to move as my hosts thought I
should. Mostly, I sat and watched TV or ate. Two of my friends
came to visit me while I was there, and one of them took me out
to McDonalds. Mom and Dad called more than once from their
hotel in San Diego to see how I was doing. After the visit was
finished, I was very relieved to go home.
Happily, my experience was a good one. No disasters occurred.
The hardest thing to deal with was having no communication
method, as there were no Facilitated Communication users at
the Agape House. Fortunately, they knew that I was a college
graduate and spoke to me, knowing that I could understand
them. They were able to look past my autistic actions and
give me respect equal to my intellectual ability.
When I go to live with other people, I’ll need to establish a
comfort zone in which no one will give up on me when my
autism makes life difficult for them, and where I won’t give
up on them when they lose their cool over the difficulties I can
cause. This won’t be easy if no communication is present. My
greatest fear is that I’ll get lost in the system and once again be
thought to be mentally disabled.
Nobody wants that to happen, but it does happen. I know this
from visiting a nursing home with my father where he helped
people to learn how to use Facilitated Communication. The
administrator had no idea where some of the residents came
from, and they had no family to serve as their advocate.
I don’t want that to ever happen to me.
When I go to live with other people, I will want to get out into
the community. I will want to use my mind to learn and to play.
I’d still like to have a fantasy baseball team and to have my
own website and blog. From what I saw at the Agape House,
getting out into the community would be very doable, but
the fantasy team and blog would be less likely to happen.
My visit to the Agape House has given me neither any divine
insight into my future, nor any assurance of total satisfaction
when I do go to live somewhere else. On the other hand,
it did help me clarify my thoughts about my concerns and
hopes for the future. In the meantime, I will continue to
enjoy what I have.
Please Join Us For The
ASEA 2008 Family Christmas Party
Sunday, December 7, 2008, 1-4 PM
Millwoods Recreation Centre (Upstairs play room)
Enjoy a light lunch (gluten-free products - no nuts),
carol singing, and a special visitor!
Please remember to bring a wrapped gift clearly
labelled with your child’s name.
RSVP to the ASEA office (780-453-3971) by
December 1, 2008.
Light at the End of the Tunnel
Terri Robson
I have spent most of my life wondering what was wrong with
me and why I was so different. For the longest time I didn’t
have any answers, and neither did anybody else— not that
many people wanted to know, anyway. It seemed that no one
wanted to get to know me or understand me. But then, I must
say I didn’t know or understand myself, either. I didn’t have any
friends. Sometimes that really hurt, yet at other times it didn’t
bother me at all: very often, I was quite content to do my own
thing. What a strange contradiction.
There were many issues with family members. My aunt recently
told me that she used to have her own version of a pep talk
with my cousins before we went for a visit. It went something
like this: “Okay boys, your Auntie Marilyn and the kids are
coming for a visit. We all know how Terri can be, so we need to
tread lightly.” I’m still amazed that, even in my late 30’s, these
words had the power to devastate me. At times they still do.
There were good things about me— special gifts, if you will—
yet not many seemed to notice. I excelled at academics, music
and sports, but people only seemed to see my “obnoxious and
socially unacceptable” behaviours. I wanted to shout “there is a
fun and enjoyable person in here,” but I couldn’t because, more
often than not, I wasn’t even aware of it myself. I was ostracized
and bullied in school, even though I was bigger than most of
my peers. It wasn’t easy “being green.”
So I did my own thing, and got in trouble a lot because I
didn’t conform to the norm. Just what is the “norm”, anyway?
It took me many years to develop coping skills and techniques
to be able to do the things I wanted and knew I was capable
of doing. Yet there were always two or three people who loved
me unconditionally, and for that I feel very blessed.
My music and my love of reading helped through the tough
times, of which there were many. When I was playing my
trumpet, and later the euphonium, I was able to put all
the hurt, anguish and joy into my music, and no one was
intimidated or repulsed. What an experience! There was joy in
my life; I just wasn’t able to realize it at the time.
Jingle Bells
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Young Lives, Bright Futures?
An Update on ASEA Research
Deborah Barrett
Thirty-one parents and seven young adults with autism
spectrum disorders participated in focus groups held in early
September for ASEA’s “Young Lives, Bright Futures?” research
project. The purpose of the focus groups was to find out how
many children with autism spectrum disorders move into
adult services with PDD, how many do not, and what the
experiences of both groups have been. Researchers from the
Vocational and Rehabilitation Research Institute (VRRI)
conducted nine focus groups, finding considerable consistency
among the various discussions. Several people indicated a
desire to fill out a questionnaire rather than participate in focus
groups. The questionnaire is currently being developed so
these people have a chance to participate as well. Information
coming from the focus groups led researchers to want to return
to the academic literature to find out more about the issues that
emerged from the discussions.
It has taken some time to work out an agreement between
FSCD and PDD to supply the data needed for the trend
analysis, which will give us a broader understanding of the
challenges that children with ASD face as they move into
adulthood. However, agreements are now in place, and we
expect to be moving along with the analysis over the next
couple of months. Researchers from VRRI will be analyzing
the information provided in the focus groups, and identifying
themes and sub-themes. The final report is due in May, 2009.
ASEA thanks everyone who participated in the focus groups,
and who will be completing questionnaires. Without you, this
research would not be able to identify the issues that currently
confront adults living with autism spectrum disorders and their
families. The research has the potential to be very timely and to
form the basis for new initiatives in programs and services for
adults with autism spectrum disorders.
Best Practice is not a “What?”,
but Rather a “How?”
Shane Lynch
Through the course of several articles in Autism Now, I have
attempted to discuss some of the aspects of best practice in
interventions for individuals with autism. In previous issues,
I have discussed the questions that consumers of interventions
(that is, parents) should ask when interviewing a potential
service provider, and looked at research reviews highlighting the
common elements of effective programs. It is now an ideal time
to reflect back upon some of the themes that have emerged and
offer some conclusions about best practice.
Educating Children with Autism, an outline of best practice
guidelines provided by the National Research Council (2001)
is, without a doubt, the most detailed description of practice
for children with autism to date. To summarize, best practice
is assessment-based, individualized instruction. Let’s take a closer
look at what that means.
Assessment-based
The first step in designing an effective intervention is to begin
with a thorough and detailed understanding of the individual’s
unique strengths and areas of need. The assessment process
should involve standardized assessment of cognitive and
intellectual functioning, assess the individual’s understanding
and use of language, provide information about the individual’s
social skills, and include a description of behavioural
characteristics. In addition, the assessment must also include
direct observation of the individual in his or her typical
environments. As a general rule of thumb, the more detailed
the assessment, the more detailed and specific the intervention
can be. There are many different types of intervention available
to consumers. If the intervention targets language skills,
then a detailed assessment of language must come first;
if it targets social skills, then a social skills assessment must
come first; and so on.
The job of assessment does not stop there— assessment is also
necessary throughout the intervention process. For a moment,
think back to when you were in school. Can you imagine never
having to take a test? How would the teacher have known
whether you were learning? The testing is mandatory not only
as a means of tracking your progress, but also to enable the
teacher to fine-tune his or her teaching. When the tests reveal
that the students are not grasping the concepts, the teacher
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can revisit missed concepts or skills to ensure students’ success.
This must also occur within the context of an intervention
program for children with autism. Once an intervention is
started, children’s performance must be continually evaluated.
Assessment of children’s progress must occur on a daily
basis. During and after each intervention session, the person
conducting the intervention must record exactly what goals
were worked on and what was achieved during that session.
The information that is collected must be objective, concrete
and described in a physical manner. It is this data that largely
responsible for driving future intervention goals.
Individualized
Anyone who has known multiple children with autism
knows that there can be great differences between them.
It follows then that no single intervention will have the same
outcomes for all children. The goal of any intervention is to
maximize the likelihood of each child’s potential for success.
Individualization is closely related to assessment: once all of
the assessment information is collected, a unique profile is
obtained that paints a picture of that individual at that point
in time. Further, the on-going monitoring of the individual’s
performance throughout the intervention process allows service
providers to further refine educational goals. This creates a
self-correcting system: an intervention that is responsive to
every aspect of a child’s functioning. Thus, if you were to
observe the intervention sessions of two different children, both
participating in one service provider’s model of intervention, it
is almost guaranteed that the daily intervention sessions would
look very different. The individualization of an intervention is
critical to an individual’s success.
Instruction
As the title of the book Educating Children with Autism
suggests, education is key. Autism is a disorder that
is characterized by three core areas of impairment:
communication, social skills, and behaviour. Two of the three
core areas (communication and social) refer to deficits in skill,
whereas the last (behaviour) refers to excesses. Knowing that
two-thirds of what makes autism unique is a deficit in skills,
it makes perfect sense that the only way to remediate the
deficits associated with communication and social abilities is
by development of skills. That is, an intervention must involve
teaching the individual something tangible.
Unfortunately, this basic principle is often missing from
intervention programs. If the individual is suffering from
a skill deficit, our job is to teach them some skills to build
their capacities and ultimately to help build independence.
Let us not forget about that last third of autism that involves
behavioural excesses. Often, the functions served by children’s
behaviour are misattributed. Typically, children engage in
behavioural excesses in order to gain access to something
that they want (food, games, adult attention, etc.), to avoid
something (an adult’s demand, non-preferred activities,
etc.), or because the behaviour helps to satisfy some sensory
needs. In either case, intervention attempts to replace the
inappropriate behaviour with another behaviour that is more
socially acceptable and/or developmentally appropriate. So the
characteristics of autism— communication, social skills, and
behaviour— are best treated by an intervention that aims to
teach the individual more effective means of communicating
and socializing with others, and behaving in a more adaptive
manner. Therefore, the final critical piece of best practice is
instruction. If the intervention program is not engaging in
active teaching of specific skills that are aimed at promoting
the individual’s capabilities and independence, then the
intervention is likely to fail. An intervention is most likely to be
successful if it is teaching the child meaningful skills that will
generalize to relevant contexts (i.e., home, school, community).
Bringing It All Together
The purpose of this article was to reflect upon what I had
written in the past, to provide somewhat more detail about
the important components of best practice, and to (hopefully)
bring some additional clarity to the murky seas of intervention.
Most service providers strive for best practice, but different
approaches may be more or less successful in meeting these
criteria. Parents have the right to ask service providers to
demonstrate how they provide assessment-based, individualized
instruction; it should raise a red flag if a service provider is
reluctant to readily offer this information to families. What do
you do when faced with the choice of picking between multiple
service providers, all of whom provide assessment-based,
individualized instruction? I would argue that this is the time
to consider factors such as how well it fits into your family’s
existing daily routine, and whether it “just feels right”.
Shane Lynch
Doctoral Candidate
Department of Educational Psychology
University of Alberta
11
Art of Autism – Absolutely Amazing!
Deborah Barrett
The chandeliers sparkled, the chrome gleamed, and the
desserts tempted, as almost two hundred people milled about
the Timms Centre for the Arts on October 8. But the buzz
was all about the art. Guests attending ASEA’s Art of Autism:
Celebrating the Gifts Within card launch reception remarked
over and over again about the quality of the art produced
by artists with autism.
“I was inspired by the amount of talent that a group of
people who are marginalized possess,” said Christian Hansen.
He and his fiancée, Molly Flood, found the art to be of a
caliber much higher than they had expected. “It was amazing,”
said Christian.
Young people, outfitted in white shirts and dark trousers,
added a touch of class to the evening as they moved gracefully
through the crowd, politely offering desserts and gathering
plates. Terry Harris, President of the Autism Society of
Edmonton Area, surprised the crowd when he identified
the servers as teens from ASEA’s Youth Groups.
The featured speaker of the evening, Brock Ralph, the
Edmonton Eskimo’s wide receiver, spoke about his experience
with his four-year-old daughter, Oakley, who has autism. Brock
and his wife, Kaisha, have been pleased with Oakley’s progress
since they moved to Edmonton. Brock and Kaisha have
become involved with the Autism Society and have generously
offered to do what they can to draw attention to our work.
The Art of Autism Reception highlighted the fact that October
is Autism Awareness Month in Alberta, and drew attention to
the fact that people with autism have a lot to offer the broader
community. Art for the event was produced by artists with
autism, then made into cards, calendars and giclées – prints
made on canvas from digital scans – available for sale
at the event.
12
Sales of cards, calendars, and prints at the reception were
brisk, with all the proceeds going to the Autism Society of
Edmonton Area. ASEA hopes to create and sell cards on an
ongoing basis, to create an ongoing source of funding and
raise public awareness. The ongoing Art of Autism card project
will be supported (packaged and assembled) by volunteers.
We hope that the program may get large enough that we
can offer employment to some of our youths who will help
assemble and package the merchandise. The Art of Autism
cards, calendars and prints remain for sale and can be ordered
online at www.autismedmonton.org.
Tamara Kerrison watches the
crowd enjoy the art at the Art of
Autism card launch
Brock Ralph, left, gives his autograph
to Kevin Harris at the Art of Autism,
as dad, Terry, looks on.
ASEA wishes to thank the artists, servers, and volunteers
who made the Art of Autism such a success:
Susan Angus
Jean Ashmore
Matthew Ashmore Anthony Barrett Deborah Barrett
Lesleigh Buchy
Roone Doolittle Chase Edwards
Ryan Guenter
Aidan Guerra
David Hryciuk
Bob Kerrison
June Kerrison
Grant Kurtz
Karen-Ann Moore
Daniel Phillips
Yvette Prefontaine
Jeff Rivers
Aidan Robertson
Andrew Ryan
Jackie Ryan
ArtCardsOrderForm
Package
1
YvettePrefontaine
RooneDoolittle
MatthewAshmore
DanielPhillips
Package
2
YvettePrefontaine
MatthewAshmore
AidanGuerra
LesleighBuchy
GrantKurtz
Grant Kurtz
GrantKurtz
AnthonyBarrett
GrantKurtz
GrantKurtz
Package
3
GrantKurtz
Package
4
AidanRobertson
Package
5
JeffRivers
JeffRivers
JeffRivers
JeffRivers
DavidHryciuk
DavidHryciuk
Package
6
Calendar
DavidHryciuk
DavidHryciuk
ORDER
Package1
Package2
Package3
Package4
Package5
Package6
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NAME:
ADDRESS:
NumberofPackages
@12.00/pkg
@12.00/pkg
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SubͲTotal
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Total
TotalPrice
$
$
$
$
$
$
$
$
$
$
Pleasemailthisorderalongwithpaymentto:AutismSocietyofEdmontonArea,101,11720KingswayAve.,Edmonton,AlbertaT5G0X5 Foradditionalinquiries,pleasecall:780Ͳ453Ͳ3971
13
Research Project:
Web-Based Health Information
Sherrylynn Kerr
Parents with chronically ill children spend a lot of time searching
for health information that will help them make informed
decisions about their child’s care. More and more, people are
going online to find this information. It is important that parents
are able to make decisions about the quality of the information
they encounter. We have designed a web-based tool, AppraiseIt,
to help parents evaluate web-based health information. The
purpose of this study is to evaluate how well AppraiseIt helps
parents critically appraise health related web resources.
We are seeking parents with children who have Autism, Fetal
Alcohol Spectrum Disorder (FASD), Cancer, or other chronic
illness and who are interested in participating. We will consider
parents with a year or more of experience with a child’s illness
as health information- seeking experts. The ultimate intention
of this tool is to provide parents with guidance in how to search
for quality information on the Internet in order to facilitate
informed decision making about the health of their children.
We feel that your contribution will be of great benefit in helping
us refine the appraisal tool, so that it is most effective for parents
seeking health information online.
The study will take approximately one hour. A researcher
will meet with you at a location and time that is convenient
for you, provided there is a secure Internet connection. We also
have the option to meet at the University of Alberta campus
in the Psychology Department. We would also be very willing
to accommodate a group of parents who meet for support
groups or other meetings.
If you are interested in participating in this study, please contact
Sherrylynn Kerr, the Research Assistant at the Instructional
Technology and Development Lab, at 780- 952-0543 or
[email protected] for arrangements. Alternatively you may
contact Peggy McFall, PhD candidate, Department of
Psychology, for more information at 780- 619-1773
or [email protected].
Thank you very much for your time.
A Woman Who Gets Things Done
Karen Phillips
A woman who gets things
done... who is willing
to roll up her sleeves...
who is thoughtful and
kind. A dedicated and
self reflective mother... a
hard worker. Organized...
friendly... positive. These
are some of the thoughts
that go through my
mind when I think about
Simonne Lougheed.
I first met Simonne
when she and her
husband Dave began
attending one of the Autism Society’s parent support groups.
One night Simonne asked if there was anything she could do
to help out. She began coming to the Autism Society office for
half a day every second week, and she pitched in with whatever
needed doing around the office.
Simonne’s daughter was attending the drama group, and
when group members wanted to start a social group, Simonne
encouraged and supported them in getting organized,
attending and facilitating their earliest meetings. Now the
group meets regularly to go out for dinner or to watch movies
together. The members now run the group themselves, but if
they ever need some extra support, Simonne is always available
to lend a helping hand.
Over time the group members began talking about wanting
something in addition to the social group: they wanted an
opportunity to discuss what was happening in their lives their successes and challenges and struggles. Once again,
Simonne offered to help get a new group up and running.
Now the new group, a support group for high functioning
autistic adults, meets every two weeks to share and discuss
14
Please return your completed form and/or donation to:
Autism Society of Edmonton Area
#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5
experiences from their lives. Simonne is the volunteer leader of
the group. The members are free to lead the discussion amongst
themselves, but if there is a lull in the conversation, Simonne
is there to ask some questions or encourages the participants to
share some more of their stories. Group members support one
another with ideas and suggestions and problem-solve together.
When she talks about the groups that she has poured so
much of her time, energy and passion into, Simonne smiles
broadly. She mentions how much fun they have together,
and how much they laugh. Simonne goes about her volunteer
work quietly, drawing little attention, but the work she
does is significant. Simonne is making a difference in
people’s lives— and what kind of work could possibly
be more important than that?
Participants needed for a research study:
Sensory Processing Patterns in the
Workplace in Adults with Autism
Spectrum Disorders
You are eligible to participate in part or all of this
two-phase study if you:
• are 18 years old or over
• have a diagnosis of Autism, Asperger’s,
PDD-NOS or High Functioning Autism
• do not have a severe hearing/visual impairment
• You do not need to be working at this time.
Phase 1:
• Learn about your sensory patterns by taking a
questionnaire! Questionnaire completion will
take 20-30 minutes.
Phase 2:
• You may be asked to talk about your work
experiences if you are currently working.
For more information, please contact:
Tiziana Bontempo
MSc Rehabilitation Sciences candidate
Queen’s University
Kingston, Ontario
Email: [email protected]
Tel.: 613-583-7743
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15
Field Placement Students – Supporting
the Work of ASEA
Karen Phillips
This fall three students began their field placements at ASEA.
Taylor Rankin and Mark Szwender are students from of
the Applied Psychology program at Concordia College, and
Mandissa Philip is a student from the Social Work program at
Grant MacEwan Community College.
The students began the year by learning about the work of
the Society: they attended Board meetings, parent support
meetings, Parent information Nights, and other society events.
In September the students from the Applied Psychology
program at Concordia College, which has a strong focus on
research methods, had the opportunity to sit in on focus groups
which were part of an autism research project. The project aims
to determine the needs of adults with autism as they transition
from FSCD to adulthood. Meanwhile, the Social Work student
had the opportunity to participate in parent interviews on the
topics of problem solving and family support.
Once the students become familiar with the work of the
society, they will begin working on various programs and
projects. Students will attend and assist with the weekly teen
social groups, the Asperger Syndrome adult support group, and
the Asperger Syndrome drama group. In addition, students will
be involved in developing information sheets on a variety of
topics of interest to parents. One student is currently working
on an information sheet on toilet training and autism. The info
sheet will offer a brief overview and then list useful books and
websites. We hope to develop several information sheets on
various topics, including Sensory Processing Disorder, Food
Issues, Sleeping, and more. If you have suggestions for topics
you would like to see information on, please contact us.
As you attend ASEA meetings and events throughout the year,
please extend a welcome to Mandissa, Mark and Taylor!
16
Dancing with Fear
Margie Koop
Within months of the birth of our second son, we sensed
that something was different about our newborn. So began
my slow dance with fear. Sometimes he cried too much,
sometimes he lay too still, sometimes his eyes looked heavy.
Slowly, the reality of what lay ahead became apparent. My
intimacy with fear grew as doctor’s visits and hospital stays
increased in number. I watched over him night and day,
compared him to our older son, and rocked him endlessly,
trying desperately to heal us both.
My mind danced furiously into the future, as I wondered
what it held for him.
“Will you be safe?”
“Will there be a place for you?”
“Will the world treat you well or simply reject you?”
“Will you be bullied and teased?”
“Who will love you when I die?”
As fragile health continued, our whole family became centred
on his wellbeing. Our eldest son grew up quickly, and even
our younger son, born two years later, rose to the challenge
of ensuring that his brother was safe and comfortable. Adding
just another beat of fear was the increasing awareness that our
youngest son also had some challenges. Small signs of a few
autistic characteristics were showing up. I carried on, even
as sadness and fear persisted. Exhaustion became part of the
rhythm. I danced, and I danced, and I did the best I could.
I was both a good mother and not a good mother, for my
anxieties often became like a smothering blanket.
Today our children are in their thirties and early forties.
I am in my sixties, and I now have the privilege of moving
into a new dance. My many engagements with fear have taught
me buckets about myself. Our sons have been our greatest
teachers. I now know we have value just because we are. I have
learned that it is not sad to have varying degrees of abilities or
disabilities, it is only sad when we don’t make a loving place
for all in the world.
Our sons are living full rich lives. They have jobs, a place to
live, friends, and activities they enjoy. I have many freedoms,
because a community is helping us create a quality of life for
them. Thanks to the Robin Hood Association, family, and
friends, we are not doing it alone.
It is now that I can take further steps towards my own healing.
I no longer want the arms of my old dancing partner to hold
me. I want a dance mate that opens me wide and helps me
embrace my life with ease and joy. I have devoted myself to
the process of healing my soul in many ways, one of which is
creating a practicum within my studies to work with this inner
transformation. I was inspired by Dr. Deborah Barrett’s thesis
on transformation through suffering, and have been working
with her on the process of finding a new way of being. I am
removing the blanket and learning a new dance that celebrates
trust and letting life flow.
Strangely, I have fought all these years for our sons to be seen
simply as human beings, and I am often angered by society’s
way of separating people with disabilities and putting them
into another category. Throughout my slow dance with a new
way of being, I am realizing that when I over-protect, I, too,
am separating them. Part of my new dance is developing trust
in our sons’ abilities to handle their lives. I am also learning to
see the world as a kind place, and finally I am aware on a soul
level that I am not the choreographer of their lives. So my new
rhythm is about trust, balance and flow. I am learning how to
be in relationship with them from a place of joy, rather than
from a place of sadness.
time the phone rang that day. Sometimes I answered without
remembering that James wasn’t feeling well.
There are now times when I actually go places without a
compulsion to always have my cell phone in my hip pocket.
Now I can understand that the world won’t collapse if I stop
watching for a minute. Sometimes I don’t phone our guys for
a few days— that’s a shift from feeling that I must phone them
because nobody else will. Finally, that deep sadness around
their limitations and losses is lifting; strange how that parallels
my own healing around my losses. I realize that none of us have
fulfilled all of our dreams and aspirations. I am not the movie
star/singer that I would have loved to be, but I really do enjoy
my life, just the way it is. James will probably never fulfill his
lifelong dream of owning and driving that black Trans AM and
travelling off down the road to California, but he has been to
California with support from others. Adapted dreams are also
fulfilling. I have learned that our children can bear their own
sadness or loss, but they cannot carry their parents’ pain piled
on top of their own. It then behoves us as parents to do our
own grief work and journey towards our own healing.
My soul dances every time I make a decision to move away
from sadness and fear. I feel its gentle applause saying “Way
to go, girl!” I am learning to boogie with joy and, for the most
part, fear is the new wallflower sitting out the dance.
Over the last year, I have become aware of the shifting sands
within me. These are little awakenings that slip quietly into
consciousness. They are almost imperceptible, except for a quiet
little voice within that whispers, “That’s different than the way
you have responded in the past!” Examples include: the phone
call from my son James’ work, informing me that James has a
bad headache— often a sign of an impending seizure. The old
me would have said, “I’ll be right there!” The today me, said,
“Is he asking for me?” When he hadn’t asked for me, I simply
stayed home saying that they should call if they needed me. I
went on to my usual daily activities and the staff took care of
James. The other shift was that I didn’t feel a sense of fear every
th fear
i
w
e
c
n
da
My slow
17
Autism Collaboration Teams
Deborah Barrett
At ASEA, a surprising amount of work goes on behind the
scenes to help advocate and create new opportunities for people
with autism spectrum disorders throughout the Edmonton
Area. Few ASEA members are likely aware of the Society’s two
Autism Collaboration Teams— the Autism Collaboration
Team and the Adult Autism Collaboration Team— but they
are important ASEA initiatives.
The Autism Collaboration Team (ACT) has been hosted by
ASEA for many years and brings together professionals from
all areas related to autism, including representatives from the
Glenrose, various school boards, Alberta Learning, service
providers, FSCD, and others. The purpose of these quarterly
meetings is to ensure that all stakeholders are informed and
working together to ensure the best service possible for our
children with autism spectrum disorders. Over the years, this
group has grown, and professionals from various areas have
worked to coordinate their services, and to create new ways to
respond to the gaps in services. This year, the ACT will begin
meeting five times a year in order to share more information
and continue to work toward improving programs and services.
This spring, in response to our ongoing concern about the
lack of appropriate, quality programs and services for adults
with ASDs, ASEA initiated a new Autism Collaboration Team.
The Adult Autism Collaboration Team (AACT) is aimed at
bringing various stakeholders together to discuss the needs of
adults with autism. The group has met twice to identify areas of
concern and to outline the needs we will be addressing. While
the job ahead seems almost insurmountable at present, we do
take heart from the progress that has been made by the original
Autism Collaboration Team, which has dealt primarily with
children’s issues. It is through the diligent work of concerned
professionals and ASEA that appropriate, quality programs
and services will one day be a reality for our adults with autism
spectrum disorders.
Mommy, What If The Kids Laugh At Me?
Tanna Somerfield
The name of the story may suggest that it’s sad, but it’s not—
it’s actually funny.
I recently sewed a long silver ribbon to the top of my son Billy’s
toque. Billy loved it: he could swing his head around while the
silver ribbon flew up and down and sideways like an electric
eel. Then, just before we left for school, Billy said, “I love it
mommy, but what if the kids laugh at me?”
“Well, Billy, if they laugh, it’s because it really is funny. You
could tell them the truth and say ‘My mom is sick and tired
of me losing my toques at school, so she tied this ribbon to it.
Now everyone will know it’s mine, and it’s just way too weird
to steal—but I like it anyway.’ Or you could tell them that
your mom got the toque off an alien last night.”
Tips for Friends
Cheryl Kerr
I recently had a friend of mine ask me for tips on how she
could better communicate with my ASD son. My son is verbal,
but at five years old, still has impaired social communication
skills. I really appreciated the opportunity to give her some
suggestions on improving social interactions between her and
my son. Many ideas came to mind, but after some thought, I
narrowed my advice down to these five suggestions:
1.Find a quiet place to talk
When we visit with our friends, it’s often as a large group.
Many children with ASD have difficulty communicating in
18
this setting, and can be overwhelmed by too much attention
all at once. Therefore, I would suggest friends wait to greet
my son until he has settled in, or perhaps find a quiet place
where they can visit. After my son warms up a bit, we can
try and mingle with the crowd, but they should not expect
a lot of eye contact nor responses in this setting.
2.Wait until the child is attentive
There is no point speaking to someone who either does
not know they are being spoken to, or is unable to focus
on what is being said. Therefore, before speaking to my
son, get his attention. Getting down to eye level improves
communication between all adults and children, so that
would be the first step. Secondly, although some children
with ASD are overly sensitive to touch, my son is not, so
touching his arm or saying his name before speaking will
help him recognize he is being spoken to. A meaningful
pause after speaking helps him know a response is expected.
3.Make more comments; ask fewer questions
Most ASD children do not respond to a barrage of
questions, yet for some reason that is how adults usually
choose to begin an interaction. (“What are you drawing? Is
it a cat? Do you like cats? Do you have a cat?”). Therefore,
I want people to know that comments work better at
developing a response than questions. “I like your drawing.
I think it looks like a cat. I have a cat, his name is Sam. Do
you have a cat?” Questions are a part of communication,
but it’s best if they do not outnumber the comments. Using
fewer words is helpful too.
5.Keep trying
I am truly lucky that having an ASD child has not alienated
us from our friends. I still feel connected to them, and
know my son is welcome in their homes. However, I do
see fewer communication attempts between them and my
ASD son versus his typically developing brother. I assume
this is due in part to my son’s lack of response during
past attempts, and an assumption that future attempts
will produce the same result. Perhaps they find this
embarrassing. I would like my friends to know how much
I appreciate any attempts they make at including my son in
their lives, and they shouldn’t feel awkward about trying to
talk to him. His communication skills continue to improve,
and if they keep in mind the other four tips mentioned
above, I’m sure their attempts will be rewarded with a
conversation, no matter how brief.
Moreover, an attempt at communicating with my son
shows respect for him, and that earns heaps of respect from
me. My friends are wonderful people with big hearts,
and I hope that with a few helpful suggestions, they’ll find
a way to be my son’s friends, too.
4.Wait for a response
Many times I see adults speak to my son, and before he
gets a chance to answer, they answer for him or are onto
the next question. Waiting patiently for a response is often
rewarded with one. If they wait and don’t get a response,
they could try rephrasing the sentence or make a statement
that helps model the response they were expecting.
A quite place to talk
19
For more info, contact Debi Currie at 780-496-7318
or [email protected]
Workshops for siblings of children with
special needs!
Join us! These workshops will provide opportunities for
brothers and sisters of children with special health, mental
health and developmental needs to obtain peer support and
education within a recreational context.
Sibshops are lively, pedal-to-the-metal celebrations of the
many contributions made by brothers and sisters of kids
with special needs. Sibshops acknowledge that being the
brother or sister of a person with special needs is for some
a good thing, for others a not-so-good thing, and for many
somewhere in between. They reflect a belief that brothers
and sisters have much to offer one another, if they are
given the chance.
The Sibshop model intersperses Information and discussion
activities with new games (designed to be unique, offbeat,
and appealing to a wide ability range), cooking activities,
art and recreational activities, and special guests.
Sibshops seek to provide siblings with opportunities for
peer support. Because Sibshops are designed (primarily)
for school aged children, peer support is provided within a
lively, recreational context that emphasizes a kids’-eye-view.
Sibshops are not therapy, group or otherwise, although
their effect may be therapeutic for some children. Sibshops
acknowledge that most brothers and sisters of people with
special needs, like their parents, are doing well, despite the
challenges of an illness or disability.
20
Saturday, November 29
10:00 AM – 2:00 PM
City Arts Centre
Special Guest: Dr. Diane Hinves - Registered Psychologist
Barcode: #297179
Ages: 8 – 13 yrs
Cost: $30.00/workshop
Lunch is provided
To register call 780-496-7318
or www.edmonton.ca/ereg
Autism and Art Therapy
Theresa Zip
Some of you may have heard of art therapy being used with
autism. You might be asking, “What is art therapy?” and
“How does it relate to my child’s autism?” I have been invited
to answer these questions here.
Art therapy is a relatively new discipline, although the idea
behind it is not new at all. Humans’ innate need to express
themselves and to create contributes to life-long wellness and to
living a meaningful life. Early psychiatrists like Freud and Jung
realized that imagery and creativity are helpful windows into a
person’s inner world. Often, the feelings arising from dreams and
real-life situations are “beyond words”. Drawing, painting and
sculpture somehow capture the intensity and complexity more
accurately. The art that is created allows the artist to “see” what
these thoughts and feelings look like, to talk about them,
to learn from them, and to feel the satisfaction of expression
and outward communication.
Art therapists are trained extensively in the properties of art
materials and the creative process. Combined with training in
psychology and counselling skills, art therapists are uniquely
qualified to offer safe and therapeutic use of art materials in order
to gently engage the client on many levels simultaneously.
According to researchers, art therapy offers several
specific benefits for people with autism (taken from
www.arttherapyandautism.com):
1. Imagination deficits can be addressed by art therapists in
a way that is without parallel in other fields. Art projects
tailored by art therapists to the needs of a person with ASD
provide a visual, concrete format in which to develop abstract
thinking skills, express creativity, and increase flexibility.
2. Art therapy can provide safe, enjoyable sensory integration
and exploration experiences that help create calm, regulated
bodies, and then move beyond mere exercises to help an
individual incorporate their experiences into a product
that helps to continue treatment.
3. Art therapists’ “tandem” use of visual expression and verbal
counselling is definitely an asset when it comes to working
with people with a communication disability. Having autism
is mentally, physically, and emotionally stressful, and many
people living with it (particularly those on the “higher”
end of the spectrum) can benefit from productive ways
of expressing their feelings.
4. Autism is a pervasive, neurodevelopmental disorder that
disrupts development in several areas. Art therapists usually
target delayed or atypical aspects of a person’s development
by working to improve their artistic/drawing skills, fine motor
skills, and social/relational skills.
5. Developing productive leisure skills is no small goal for
people with ASD. Self-direction, industriousness, patience,
and pride in one’s work are important life skills that require
a great deal of teaching— teaching that is best done through
motivating activities. Developing productive leisure skills is
also a popular reason for referrals to art therapists: parents
want their child to be able to benefit from recreational
art-making, and feel that a therapist will be better trained
to provide adaptations, behavioural support, and more
meaningful goals.
6. Drawing is a useful tool for both revealing and addressing
visual-spatial deficits such as mental rotation and improving
hand-eye coordination. People with autism sometimes exhibit
exceptional or atypical visual-spatial development
(for example, excellent mental mapping skills but poor
drawing or mental rotation skills). As with the other
treatment goals listed above, it is the individual’s motivation
to “play” with art materials that makes art therapy an
attractive format to address deficits.
These benefits are largely discussed in terms of working
individually with an art therapist. There are additional benefits
for people with autism from working in a small group with other
21
people. Gentle and meaningful socialization arising
from an art-making focus helps foster group cohesion
and feelings of belonging.
-Theresa Zip, B.Ed, MA, Professional Art Therapist
Here in Edmonton, we are looking at starting a group for
adolescents and young adults with ASD. If this interests you,
please contact Theresa Zip ([email protected]) or the
Autism Society of Edmonton Area for more information.
destination for the week, a rural resort in Normandy called a
Gite — a new type of tourist accommodation that is scattered
throughout the countryside. Curiously enough, there was a
signpost for a place named “Autisme” along the way (I still
haven’t found out why it was so named). Various day trips
found us looking at cathedrals and other historical treasures
throughout Normandy.
Living the life of an adult with autism isn’t always easy, sometimes
there are ups and sometimes there are downs. Board member
Alan Wagner reflects on the past few months.
Before returning to Britain I spent a very quick two nights in
Paris, during which I got a rush tour of some of its greatest
attractions. Although it was too late to go atop the Eiffel Tower,
I did get to see it, and also had the chance to watch a sparkling
light show in the night sky. After that, I took a very quick
two-and-a-half-hour trip through the “Chunnel”, ending
up in London.
Summer has come and gone, and it has been an interesting
few months. As many may be aware, my company, Convergys,
closed its doors in Alberta during the summer, leaving several
hundred people looking elsewhere for work.
Two days in London came later. First, I took the train to
meet with some of my family in Inverness-shire. We had two
wonderful days there, one of which we spent riding an old
steam train in the Cairngorms.
One option was to join a program to field customer service
calls from home. Despite the fact the starting pay for the
job was lower, it was an option to consider because there
would be no fuel consumption or vehicle wear. My commute
across Edmonton — even for just three days a week—
was a significant factor in my cost of living.
Upon my return to London, I took to doing a lot of walking.
I got to see a lot of mobile phone and electronics shops along
Edgware Road and Kilburn High Road all the way up to
Brent Cross, all by foot! Wonderful things do come to an
end, though. Nine hours and I was back in Edmonton,
Canada! It was nice be back, especially for my roommate,
who thinks he’s a cat!
A Few Thoughts From Alan
Alan Wagner
Commencement of my training for work at home was
delayed by my family’s already-planned trip to Europe!
The nine-hour flight to London and the one-hour flight to
Glasgow went by smoothly. We spent the first week of our trip
in Scotland, passing much of our time on the Isle of Mull.
One place of special note is the original Calgary, a quaint
rural spot with a booming population of a hundred people
(and five hundred sheep).
After a quick (and inexpensive) flight from Prestwick to
Beauvais by RyanAir, we were riding in a hired car to our
22
August saw a couple of Support and Social group meetings
and preparation for my work-at-home job. Now, it is
September. The leaves are turning yellow and red. I have started
training to take calls in October. I have had a busy week in the
world of Autism. I took part in the Autism Speaks Walk, and
attended the first board meeting of the fall. Friday, I met with
my Drama Group colleagues to discuss what we want in a
new group mentor.
Time will go on and tell the rest. Back to work on
Monday. (Long commute - such a distance from the
coffee pot to my desk!)
Parents of Recently Diagnosed Children Discussion Group
Patricia Terrett, ASEA’s Family Support Worker, has organized
a new Parent Discussion Group for Parents of Recently
Diagnosed Children. We will be meeting on the second
Thursday of each month at 7:00 pm in the AACL Meeting
Room, located next door to the Autism Society at 11728
Kingsway Avenue. Our next meeting will be on Thursday,
November 13 at 7:00 pm.
This group is intended to allow parents who are in the
process of having their children diagnosed, or whose
children have been recently diagnosed, to meet and share
resources, strengths and stories. Our previous meetings
have been warm and supportive, with lots of laughter and
good information being shared. We have selected a list of
topics that we want to investigate as a group, and will be
inviting resource people to join us in our discussions of each
topic. This will be a wonderful opportunity to network, share
resources and ideas, and find others who are experiencing
similar issues with their children on the autism spectrum.
Parents are requested to phone the office (at 780-453-3971)
or email [email protected] for further
information, or to let us know their intention of coming.
The meeting room will be divided into two separate areas, so
that parents who do not have respite care for their children
can bring them along when they attend the group. We have
an experienced child care worker who will supervise and
give leadership to our children’s program while the parents
meet. We request that families who will be bringing their
children give us advance notice by calling the office at
780-453-3971 to let us know their ages. This will allow our
child care worker to prepare suitable activities for them. This
program will be limited to between ninety minutes and two
hours, so families can plan their time efficiently.
We look forward to seeing you there!
Thank You to Our Autism Now Contributors!
Jean Ashmore
Backstreet Communications
Karen Bain
Deborah Barrett
Kristin Giduk
Terry Harris
Cheryl Kerr
Sherrylynn Kerr
Margie Koop
Simonne Lougheed
Stephanie Lougheed
Treva Lunan
Shane Lynch
Karen Phillips
Terri Robson
Tanna Somerfield
Roman Sokolowski
Ian Wetherbee
Alan Wagner
Gail Gillingham Wylie
Theresa Zip
Your talent and hard work have made this issue
of Autism Now possible!
Good informati
on being share
d
23
A Group for Parents of Adult Children
with Asperger Syndrome
Simonne Lougheed
At an Autism Support meeting last fall, many parents spoke
of their desire to do more for our adult children with Asperger
Syndrome. Our adults have phenomenal skills and can become
an integral part of society— they just need some extra supports
to bring out their strengths, help them to reach their full
potential, and allow them their independence.
On December 5th, 2008, parents of adult children with
Asperger met for the first time. Since then, the group has been
meeting on the first Wednesday of every month. We have
discussed many different issues that affect the lives of adults
with AS, but felt we needed to focus on five core issues to begin
with: life skills, education, housing in a safe environment,
employment (including job coaching and training), and
medical well-being (particularly anxiety and depression).
In June, the parents met with a group of adult Aspies and had
a wonderfully enlightening session. As a group, we made a list
of what the parents wanted for their adult children, and then
a second list of what the adults wanted in their lives. After
the lists were made we separated the group into two smaller
groups— one for parents and one for Aspies— so that everyone
would feel free to further discuss the issues that had been
raised. This brought out some insightful thoughts and raised
several other important issues, such as housing, education,
meaningful jobs, lack of public awareness, transportation, lack
of commitment, independence, uncertainty of the future, and
the list goes on. While the issues that were brought up were not
necessarily new, not everyone had considered all of the issues
before. Each person attending had the chance to see things
from a different point of view and gain a better understanding
of what it’s like to live with AS.
At our last meeting held on September 5th, the group learned
about $10 million in new funding that will be made available
from the Department of Employment and Immigration. It was
24
decided that we should try to meet with Department managers
and share the difficulties AS adults have obtaining and keeping
jobs. It was also decided that we send a letter to the appropriate
program managers to raise awareness of the plight of our
children, especially in the area of employment.
We hope that more parents will attend the meetings
to give our group more credibility and influence towards
our goal of helping our children with AS achieve health,
happiness and security.
Please join us on the first Wednesday of each month at
7:00 PM in the ASEA office, located at #101,
11720 Kingsway Avenue.
A Little Bit About Club Quirk
Stephanie Lougheed
A social group for adults with Asperger’s Syndrome— how
crazy an idea is that?! Who would want to go to a group like
that? Apparently quite a few people, as it turns out! I can
remember when my mom told me that she was going to start
such a group— I was tickled. I have Asperger’s Syndrome, and
I don’t usually like going out for fear of being judged, but I
do love going out with the members of this group. The first
meeting was interesting, to say the least: freezing cold weather
and meeting three new people. It was a lot of fun! The next
time we had a meeting, I had to run it, because my mom
was out of town— that was a lot of fun, too. That night, we
discussed various names and decided on one: Club Quirk,
which fits us quite well, since we are so quirky!
Club Quirk has been meeting for the last eight months, and
it has been a blast. The members of the core group get along
phenomenally well. We crack jokes, tell stories, eat good food
and just have fun. Whether it was at BP’s, The Pantry, La
Pagode, my birthday party, Royal Buffet, or even the food court
at WEM (that was the time we forgot to make reservations at
the Old Spaghetti Factory!). The group is growing, and we try
to meet everybody’s needs. For me personally, the group has
provided even more than friendship and a reason to get out:
I also met my boyfriend of nearly six months at a Club Quirk
gathering. It was not my intention to find a boyfriend there;
it just happened. I look forward to our get-togethers, since I
never know what will happen. I have even had several Club
Quirk members over to my house for extra get-togethers, and
we always have a great time!
For me, this group has had many positive effects. I met a lot of
great people, and even began dating one of them. Also, being a
member of this group has helped me to become a more sociable
member of society in general.
Edmonton South Sign-A-Rama
Donates Banners
Pictured: Jean Ashmore, Secretary for ASEA (second from left), accepts the
banners on behalf of the Sign-A-Rama staff (from left to right): Alex Lazutin,
Alex Barscevski, Armando Palacious.
Thanks to the generous folks at Edmonton South
Sign-A-Rama, the Autism Society of Edmonton Area will
now have a more impressive, professional presence at
community events with their newly donated banners.
ASEA would like to extend a sincere thank-you to
Edmonton South Sign-A-Rama Owner, Alex Lazutin;
General Manager, Alex Barscevski; Graphics Production
Specialist, Robert Newell; and Graphic Designer,
Armando Palacios for their friendly and professional
service. ASEA encourages its members to visit the
Edmonton South Sign-A-Rama at 3819-99 St. for all their
signage needs, and to extend their own personal
“thank you” to the Sign-A-Rama staff.
ore
Desir
om
e to d
25
Interactions Program at Belmead School
Kristin Giduk and Treva Lunan
Belmead is an Edmonton Public Elementary School just
west of West Edmonton Mall. There are approximately
235 students from Kindergarten to Grade 6, including two
Interactions classes with a total of twenty students. Students
in the Interactions program have been diagnosed with Autism
Spectrum Disorder (ASD).
true for most students with ASD. We will introduce one map
a week for eight weeks so that students will become familiar
with each type of Thinking Map. These maps can be used in all
content areas. The first map we are introducing is the
Circle Map. We completed a Circle Map to define “Fall”:
The Interactions Program has a high staff-to-student ratio,
which allows for some one-on-one time on a daily basis,
as well as lots of opportunities for small group work. Our
program strives to help students develop to their full potential.
Students in our program have a wide range of abilities and
skills: some students achieve at grade level in one or more
subject areas, while others demonstrate severe delays in many
areas of development. We focus on academic and functional
life skills, depending on the level of the individual student.
An emphasis on communication, social skills and appropriate
behaviour is key to our program because students with ASD
typically struggle in these areas.
We provide a structured classroom setting with opportunities
throughout the day to use the sensory room. The sensory room
has special equipment which provides students opportunities
to improve their fine and gross motor skills, as well as regulate
their sensory needs. Students have the opportunity to be
integrated into other classrooms, when appropriate, to focus
on socialization and/or academic skills. Social stories, visuals,
discrete trial training, a high level of positive reinforcement
and token systems are a few of the strategies used to help each
student reach their potential.
This year Belmead School is implementing the use of Thinking
Maps. Thinking Maps professional development helps teachers
use the same language from class to class. It is a language of
eight visuals based on thinking processes that can be used as a
lifelong tool for learning. Research indicates that many students
learn better through the use of visuals, and this is also very
26
We will go on to practice using the following maps: the bubble
map to decribe, the double bubble map to compare things, a
tree map to classify, the brace map to go from part to whole,
the flow map to sequence, the multi-flow map to show cause
and effect, and the bridge map to help us see analogies.
Autism Spectrum Disorder Workshops
Dr. Goulden has kindly offered to give workshops
again this school year. These workshops are open to
all staff working with students diagnosed with Autism
Spectrum Disorder. Each workshop takes place from
3 to 4 P.M. on the Thursdays listed below. There is
no cost for the workshops; however, we do ask for a
donation of a loonie for refreshments. Please pass this
e-mail around to anyone who you think would
be interested in attending these workshops.
The dates and locations for each workshop are:
One-on-one time
January 15th at Belmead School 9011-182 St.
– Topic to be determined.
March 12th at Allendale School 6415-106 St.
May 14th at Allendale School 6415-106 St.
Each workshop will be held in the gym near
the front entrance.
RSVP to Treva Lunan at [email protected] to register.
Please register at least three days prior to the workshop
day so that handouts can be prepared.
oms
o
r
lass
red C
tu
Struc
27
Thank You to All of Our Recent Donors!
Mosaic Sponsors – $1,000+
Art of Autism Donors
A. Clark Roofing & Siding Ltd.
Gold – $2500
Kaleidoscope Sponsors – $500-$999
Shores Jardine LLP
Andrew Gregory
Silver – $1000
Tiffany Sponsors – $100-$499
Jack and Marily Cohen
Edmonton Catholic Schools
London Drugs
S. Minsos
Ron Palmer
Telus Communications Co.
United Way (Donald Kwas)
United Way (Eddie Tsang)
Bronze – $500
Golden Rice Bowl Restaurant
Maclab Enterprises
Jaana & Arto Ohinmaa
Kerry Wardrop
United Way (Cornell Dover)
United Way (Doug Shell)
Gail & Gordon Wyatt
Collage Sponsors – 0-$99
Sunil & Stacey Barran
Edmonton Community Foundation
Ivana Pagnotta
United Way (Trese Biddiscombe)
United Way (Stuart Brown)
United Way (Sandra Pollard)
United Way (Manuel Rodriguez)
United Way (Karen Davis)
Melanie Yourechuk
Kim Desjarlais
Carol Mattie
Doug Smythe
United Way (Marvin Brokop)
United Way (Karen Davis)
United Way (Claire Potter)
United Way (Amber Torvalson)
Ruth & William Wyatt
Your generous donations make ASEA’s work possible!
Arda Baltzan
Esther Ondrack
June Kerrison
Halbar Stainless
Friends – $100-$400
Joan Goldstein
Linda Hardy
Debbie Miller
Susan Minsos
Molllie Hall
Linda Hardy
Susan Wylie
Gifts In Kind
All Tucked In
Focus Communications
Marlo Richards Flowers
TK Clothing
Mike and Peggy Field
Kamena Gallery & Frames Ltd.
Printing Impressions
Did you know?
You can direct your United Way contribution to the
Autism Society of Edmonton Area.
28
Events at a Glance
Parent Information Nights and Teacher Information Nights
take place in the AACL Meeting Room, 11724 Kingsway
Avenue. If you wish to attend, please register in advance.
The admission cost is $5 for ASEA members and $15 for nonmembers. For more information or to pre-register, contact
the ASEA office at (780)453-3971.
December 2008
Parent Drop in Meetings - Tuesday afternoons from
1:00 to 2:30 pm and Thursday mornings from 9:30 to 11:00 am
at the Autism Society 11720 Kingsway Avenue. All parents
of children of any age with an Autism Spectrum Disorder
are invited to drop in for discussion, support, resources,
problem solving, etc.
Wednesday December 3rd, 7 PM
Asperger Syndrome Parent Meeting
(Parents of Adult Children)
For information about the adult drama group (Autism
Society Players), the adult social group (Club Quirk) and
the adult support group, please call the Autism Society
at (780)453-3971.
Thursday December 11th, 7 PM
Autism Parent Discussion Group for Parents of Children
Recently Diagnosed
November 2008
Wednesday November 5th, 7 PM
Thursday November 13th, 7 PM
Recently Diagnosed
Monday November 17th, 7 PM
Transition Planning for Adulthood: Funding
Gateway Association for Community Living
Call 780-454-0701 for more information.
Monday December 1st, 2008
Transition Planning for Adulthood: Post Secondary,
Employment and Community Connections
Call 780-454-0701 for more information.
Sunday December 7th, 1 PM
ASEA Children’s Christmas Party
January 2008
Wednesday January 7th, 7 PM
Thursday January 8th, 7 PM
Recently Diagnosed
Monday January 12th, 7 PM
Transition Planning for Adulthood:
Guardianship/Trusteeship/AISH
Tuesday November 18th, 6:30 PM
Teacher Information Night:
Autism and Communication
Thursday January 15th, 3 PM
Information Session for Teachers
Dr. Goulden at Belmead School
RSVP to [email protected]
Wednesday November 19th, 7 PM
(Parents of Children 17 and Under)
Tuesday January 20th, 6:30 PM
Teacher Information Night:
Autism and Curriculum Adaptation
Tuesday November 25th, 7 PM
Parent Information Night:
Dr. Carole Anne Hapchyn
Autism and Children Under 6 Years of Age
Wednesday January 21st, 7 PM
(Parents of Children 17 and Under)
29
Monday January 26th, 7 PM
Transition Planning for Adulthood: Introduction to Self
Advocacy and Wrap Up Celebration
Tuesday January 27th, 7 PM
Parent Information Night:
Disability Registered Savings Plan
March 2009
Thursday March 12th, 2009
Edmonton Oilers 50/50
Edmonton Oilers and the Atlanta Thrashers
Volunteer and Watch the Game
Do you want to see your events listed on this page?
Just e-mail them to [email protected].
Autism is:
These figures illustrate some of the manifestations of autism. Not all persons with autism experience
each of these symptoms and they vary in severity.
Difficulty with
social relationships
Difficulty with
verbal communication
Difficulty in the
development of
typical play
Resistance to change
in routine
Extreme responses to
sensory stimulation
Early diagnosis is essential if people with autism are to achieve full potential. It is only when their disability is
understood that they can be helped to maximize skills and minimize problems.
30
MEMBERSHIP APPLICATION
1.THANK YOU FOR YOUR ASEA MEMBERSHIP
Thank you for joining ASEA. Membership fees contribute directly towards the Society’s ability to provide informational resources and services to
families and professionals who support individuals with Autism Spectrum Disorders.
2.Name & Contact Information All information gathered will not
be sold, traded or used for any purposes not directly related to ASEA
Dr. / Mr. / Mrs. / Ms. (First)_________________________________________ (Last)________________________________________
Dr. / Mr. / Mrs. / Ms. (First)_________________________________________ (Last)________________________________________
Mailing Address:________________________________________________ City_______________________ PC________________
Telephone: (h)_________________________________ (w)_________________________________ (c)_______________________________
E-mail:_______________________________________________ 2nd/work e-mail:________________________________________
Occupation / Workplace:_______________________________ Occupation / Workplace:_ _______________________________
I am:
❍ an individual with autism
❍ a teacher/teacher’s aide
❍ a parent
❍ an agency
❍ a relative: ________________________________________
❍ a professional
3.About your children Knowing the ages, situations and schools of your children
helps us notify you about programs available and scholarships for siblings.
dd/mm/yy
Your child’s name_ _____________________ DOB_________________
Are they autistic? ❍ School_ _________________________
dd/mm/yy
dd/mm/yy
4.Type of Membership ASEA has simplified its membership offerings for your convenience
❍ $40 New family membership
❍ $100 professional / agency membership
❍ $40 renewing family membership ❍ $40 teacher / teacher’s aide membership
❍ *$0 assisted family membership * ASEA recognizes that some families are unable to afford annual fees. ASEA will consider requests
for assisted family membership on a case by case basis. All inquiries will remain confidential.
5.Payment Memberships are renewed annually.
Donors and volunteers play an vital role in sustaining services and creating new programs.
❍ Visa
❍ MasterCard
❍ AMEX
❍ Cheque
(mm/yy)
Card number___________________________________ Expiry date_____________
Signature_______________________________________________________________
Yes! I’d also like to make a donation to ASEA
Please consider giving
of your time or financial
resources in addition
to your membership.
❍ $10 ❍ $25 ❍ $50 ❍ $100 ❍ Other_________________________________
❍ Yes! I’d like to volunteer for ASEA – please contact me!
All donations over
$10 are eligible for a
charitable tax receipt.
E-mail: [email protected]
31
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Enterprises Ltd.
Return undeliverable Canadian addresses to:
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Autism Now - Autism Edmonton

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