Autism Now - Autism Edmonton

Transcription

Autism Now
aut um n 20 07
volume 20, number 3
AUTISM SOCIETY OF EDMONTON AREA
www.autismedmonton.org
BOARD OF DIRECTORS
EXECUTIVE
PRESIDENT
VICE PRESIDENT
TREASURER
SECRETARY
Dr. Deborah Barrett
Terry Harris
Ryan Guenter
Jean Ashmore
DIRECTORS
Laurie Adam
Leanne Forest
Mark Lynch
Andy Sung
Karen Phillips
Alan Wagner
Amy Bourne
Dr. Keith Goulden
Shane Lynch
Anh Ong
Charlene Prochnau
Articles, opinions and events in this newsletter 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.
#101, 11720 Kingsway Avenue
Edmonton, AB T5G 0X5
(780) 453-3971 / (780) 447-4948
email: [email protected]
website: www.edmontonautismsociety.org
Ad rates are as follows, please phone
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The Autism Society of Edmonton Area is a non-profit
organization founded in 1971 by a concerned group
of parents and professionals. The society’s mission is
to create a community where individuals with Autism
Spectrum Disorders are valued and can achieve their
full potential, and to help families support their loved
ones with autism throughout the lifespan.
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President’s Message
Deborah Barrett
Recently, a couple of friends told me that
if they didn’t know my son Anthony, they
wouldn’t know anything about autism.
I found this distressing. Because I am
sensitized to autism, I seem to see lots of
information, but the average person is not
aware. The average person doesn’t know what autism is or how
it affects a child or adult. And because people with autism do not
look any different (except that maybe they’re cuter), most people
would not recognize a person with autism if they came face to
face with him or her. Nor does the general public know the
stresses and strains that having a child with autism places
on the family. Children with autism generally grow into adults
with autism, and the lion’s share of care and responsibility
continues to rest with the family. Who but a small circle of
family and friends knows?
Because of this, ASEA is taking steps to inform the public
about autism. We planned a mini-public awareness campaign
for late October and early November, featuring print ads
created for us by Backstreet Communications. You may have
noticed some ads in the Edmonton Examiner, Your
Health, Edmonton’s Child, Edmonton Senior or the
ATA newsletter.
The thrust of our mini-campaign was to educate the public about
autism and to point out that autism is invisible. People with
autism cannot be distinguished from the general population just
by looking at them. To that end, the Autism Society Players have
written, acted in and produced a short commercial informing
the public of the nature of autism and stressing that autism is
invisible. This commercial was first aired at the Opening Doors
Gala on October 13 and was much appreciated by the guests.
But work needs to continue. Plans are in the making to develop
a phased-in public awareness campaign over the next few
months and years. Although knowledge and services have grown
significantly since my 19-year-old was younger, there remain few
services for teens with autism and virtually none for adults. Until
the public understands what autism is, what level of support
people with autism generally need, and that these needs stretch
throughout adulthood, there will be little change in the system.
Appropriate services and supports must be developed for people
with autism throughout the lifespan. ASEA is leading the way in
making the public aware!
Which one of these children has Autism?
In fact, Autism Spectrum Disorder affects one in 150 people. This lifelong
disability impairs the ability to talk, communicate and understand social
situations. It restricts interests and behaviours.
There is no known cure for Autism.
We need your help.
The Autism Society of Edmonton Area (ASEA) provides support and information to parents,
families and individuals touched by Autism Spectrum Disorders, as well as resources for professionals,
educators and caregivers.
For more information on Autism and how you can help visit autismedmonton.org
Paid for by a donation from the Roy Saito Therapeutic Riding Association
2
Education Matters – What is Chaining?
Karen Bain
For students who struggle to learn concepts and skills easily,
it is common to reduce instructional tasks into small steps
or discrete behaviors. For example, Discrete Trial Training, a
form of instructional programming that is frequently used for
students having autism, is based on directly teaching specific
behaviours as responses to arranged cues and opportunities.
For engagement in the community, at home and at school,
however, students must integrate various discrete responses into
sequences, known as chains of behaviors, which are completed
in specific sequences to perform particular tasks or routines.
Examples of these chains or behavioral routines are: getting
a lunch kit and going to a cafeteria; going out to recess, or
preparing to go home at the end of the day. These chains require
a sequence of individual responses in which each response in
the chain cues or triggers performance of the next response in
the sequence. For example, getting a lunch kit cues carrying
it to a table, which cues sitting down, which cues opening the
lunchkit, which cues eating the lunch, and so forth. Ideally,
steps of a behavioral chain should have a functional relationship
to one another and result in a purposeful goal if performed
correctly. School routines necessary for social and academic
participation are based on performance of behavioral chains.
If teaching is well planned, completing each step of a chain sets
the occasion for the next step. Each step becomes the natural
cue to perform the next step in the sequence. The chain also
involves steps of conditioned reinforcement and the potential
for natural reinforcement at the end. When planning to teach
a chain, therefore, the teacher must identify each necessary
response, the reinforcing consequences for each response and
the procedures, such as prompting and prompt fading, that may
be required to teach and assist the performance of each step.
When developing instructional programs to teach chains, a task
analysis may be necessary. This process involves observing a
competent person performing the task and creating an accurate
list of all of the necessary steps. Depending upon the ability
level of the student, the chain may be analyzed into larger
or smaller number of steps. For example, when teaching
3
the chain “to make a glass of juice from a powder mix”, some
students may have to be taught a separate step of measuring a
spoonful. Other students may not have to be taught this step, so
their chain of instruction will have fewer steps. Similarly, some
students may need to learn to “fill the glass to the line with
water” with a fixed line on a glass as an environmental prompt;
other students may already know how to fill a glass and their
chain of instruction will be abbreviated. When analyzing
a chain for instruction, however, all individual responses must
be identified and written down.
Before instruction of a chain, assessment of each student’s
ability to perform each task in the chain identifies which parts
of the chain must be taught separately prior to integrating the
complete sequence of steps into the total chain. The assessment
results in matching current skills and abilities with those in the
required chain to select what to teach.
Teaching chains may be done through forward chaining,
backward chaining, or total task training. Backward chaining
involves teaching the last response to a chain first. The teacher
models performance of each task in the chain in sequence,
then teaches the student to perform the last step in the chain.
In subsequent trials the student learns to perform the second
from the last step and the final step, progressing backwards
until he or she can perform all of the steps in the appropriate
sequence from first to last. This procedure allows for maximum
prompting through the first part of the routine and immediate
natural reinforcement for the last step. This procedure may be
particularly useful for skills such as making a bed, where the last
step is pulling the bedspread over the pillow, ending the task
because then the bed is “all made”. These “last steps” end
in reinforcement, are highly visual, and are brief.
Forward chaining involves teaching a student to perform the
first step in a chain; the teacher then models performance of
the remainder of the steps in the sequence. The teacher must
reinforce the student for appropriate performance of each
individual step, and in the event of errors insure appropriate
correction of each error.
In total task training, students are taught to perform all tasks
in the chain as each is performed in sequence. Teachers must
be prepared to teach every step during every trial, resulting
in more effort on behalf of both the teacher and the student,
and possibly leading to increased levels of interfering behavior.
Ideally, the greatest reinforcement should be the natural
reinforcement arising from completing the task, but ongoing
reinforcement throughout performance of the chain may also
be required for learners who have compliance problems and
short attention spans.
For students having special education needs, the beginning
of a school year is a good time to consider two or three
behavioral chains that may result in increased independence
and participation with peers as focus goals and objectives.
Students who learn functional routines and appropriate chains
necessary for school involvement are more likely to be engaged
with peers and reduce the need for constant adult supervision
and support, but only if teaching is careful and consistent until
mastery of the sequence of behaviors can be assured.
[email protected]
Autism Inside Out
Why I Don’t Believe in ABA
Julie Skibington
Contributed by Gail Gillingham Wylie
I am 31 and was diagnosed as “high functioning autistic” in
1978 when I was two and a half years old.
Back then, high functioning autism was unheard of, and at first
I was just diagnosed as being a “retarded” and “manipulative”
child who should be locked up in an institution because it
would not be fair to my “normal” brother to be raised with a
“child like me”. My parents, recently emigrated from England,
would not accept that diagnosis, since more was known about
the autistic spectrum in England at the time. In fact, they were
ready to go back to England and raise my brother and me there
because of this.
There was an autism society starting up in the city I was raised
in, and my parents got the name and phone number of the
woman who was running it. This place specialized in what is
now called ABA (Applied Behaviour Analysis, Lovaas’ version)
and would not treat anyone under the age of 6 (yes, you
read that right). They took me in, however, and performed
their treatment on me anyway. My mother also lived at this
institution because she was worried about mistreatment, and
because she wanted to learn how to do the ABA treatment at
home. I was out of there 3 months later, doing far better than
I had been before I went in.
Was it because this ABA was successful? More than two decades
after I received the ABA treatment, it is now believed that
the earlier one receives treatment of this type, the higher the
chances of success. Now it’s rare for kids over the age of 6 to
be accepted into funded programs! By the end of my ABA
treatment, I was talking, doing things on my own and using
words that university professors could probably relate to, but
kids my own age could not. I went from non-verbal to speaking
at a high school level within three months.
Lovin
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to Lea
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4
Looking at my own past, one might say the ABA
was successful. I don’t believe it was. Let me tell you about
what happened when I moved out and lived on my own,
which should explain why I am actually against ABA/IBI/
Lovaas style treatments:
Sure, I was all ready. I had a college education, with a 4.0 GPA
to boot, I could drive, and I had been working since I was 13.
I had even lived with a few roommates and on my own.
But just before my 24th birthday, something happened to me
that seems to happen to a lot of us in our early to mid twenties:
the Meltdown from Hell. And, yes, I’m going to use the word
“hell” because that is exactly what it was like, and I’m not sugar
coating it for you. It had been triggered by an experience at an
“alternative healing” clinic. They had done some hypnosis and
planted some sort of horrible memory into my mind
(this happened to three other women, as I’d find out later).
I always had digestive problems and GERD (acid reflux) that
went untreated because it was considered “behavioural”. After
my “alternative healing”, the acid reflux came back to bite me
and let me know that it was most certainly not “behavioural”.
All of a sudden, I could not even drink water because the reflux
and pain were so bad. I had this taste in the back of my throat
like I was drinking acid. Naturally, I could not eat, either. I
dropped about 60 pounds in a matter of weeks... not healthy!
Because of this, all of those little autistic “behaviours” I had
been hiding so well, because ABA just teaches a person to
pretend to be normal, came crawling out of the woodwork
(kinda like cockroaches when company comes over). I was
having panic attacks 5 or 6 times a day. They would last for
about 4 hours and leave me paralyzed from the waist up
(that’s what happens when you hyperventilate for too long you seize up). Lots of fun. When I could move, I was
flapping, rocking and pacing around because it brought me
comfort. I was scratching myself to divert the pain. I was a
right old mess: I screamed, cried, howled and could not
speak very well anymore.
5
Fortunately for me, I was hiding my autism so well that no
one actually knew about it at the hospital I worked at, so it
was quite a transformation for them to behold and they didn’t
know what to do! They didn’t believe me when I told them
because I “seemed so normal”. It was all an act, my dears! (I
think I should get an Oscar for the 21 years of my “pretending
to be normal” performance. It was truly a feat of skill which
came with a heavy price.)
Two days before my 24th birthday, I was in the emergency
ward, half dead, unable to move and seriously dehydrated.
It was a wonder I had survived! My boss at the time, a
neurologist, referred me to a stomach specialist, which is
something that perhaps should have been done when I was 5
or younger! He tried his best, but he discovered another thing
about me: I’m really sensitive to medications and have some
bizarre reactions. They tried to sedate me to do an endoscopy
and I blacked out (after taking a swipe at the poor guy) and
had to be given the antidote or I might not have woken up.
I was put on Prepulsid (now pulled off the market) and my
system was moving again. I could drink water again and take
vitamins. The vitamins restored my depleted system and I
began to feel better emotionally.
I did some research (thanks to my obsession with medicine and
psychology) and found a new drug for GERD that might work
and had very few side effects. I was put on it and the GERD
was finally, after 24 years, under control! I had to come off the
prepulsid because the combination of the two rendered me
unable to swallow. Apparently, my esophagus had just about
been burned through and it took a few years before I could eat
anything more zippy than bland soup, bread and rice.
All this happened because of the following:
t*IBEJHOPSFENZMJNJUT*EJEOUCFMJFWF*XBTBVUJTUJDPS
I thought that I had been cured, and as a result I pushed
myself way too far.
t.ZNFEJDBMOFFETIBECFFOHSPTTMZJHOPSFEJONZ childhood, blithely put off because it was “all in my head”.
(Yeah, right.) That just about killed me.
As for the panic attacks, I get them when things are wrong
or I’m pushing myself too far. When things are out of
whack, they happen. When I get it all sorted out, they stop.
een a
Autism has b
blessing
No meds for me - remember what happened at the hospital
with the tranquilizer. Apparently, my doctor knew of my
weird reactions and decided that a baby’s dose of the weakest
thing he could find would help. It didn’t and he got a black
eye and I don’t remember any of it.
I hauled myself out of that meltdown and realized some very
simple facts about myself and autism:
My mother finally realizes my dietary needs (which I had
to determine on my own with the help of a dietician)
and finally makes food I can eat when I go over
there for supper.
That took nearly 30 years of trying to tell her, folks,
which proves that autistics are not listened to even if
they can talk!
t*XBTOFWFSHJWFOUIFUSBJOJOHPSFEVDBUJPO*SFBMMZOFFEFE
- how to cope with the differences in my perception and
how to relax myself enough to clear my mind so I could
sleep at night.
I spent a lot of time when I was 24 working on myself.
I taught myself routines at night which now automatically
“turn off the racing thoughts” and put me in a state of
relaxation enough for sleep. No one ever taught me that
very simple little skill.
I’m still working on dealing with my dietary changes that
have to happen when my body decides it all of a sudden
doesn’t like what I’m eating after 2 years of being ok with
it! (I know I’m not alone on this one either...I’ve heard
of many other autistics needing to change their diets
regularly because of this.)
Autism does not go away, it cannot be cured, it cannot be
“trained out”. I’m in it for life.
Autism can be a royal pain at times when my hypersensitivity
gets in the way of things, but I’m hardly suffering compared
to folks with cancer, Huntington’s Disease or any number of
nasty things out there!
Autism has been blessing in so many ways: I have a
photographic memory, the ability to learn quickly and
effectively, the ability to see things objectively, the ability
to handle emergency situations better than most, the ability
to rationalize emotionally charged things, the ability to
handle pain that most folks would need medications for
and (this is true) les wrinkles because I’m not prone to
expressing emotion!
Autism is a part of my life, but it should not prevent me
from living life to my standards
I have an extremely strong will and, because of my past,
I will not accept being abused by anyone again.
Autism is not a death sentence - denying it and pretending
to be normal almost was.
6
Sweet Sleep
Kim Crowder
Many autistic children have trouble sleeping, thus making it
difficult for anyone in the house to sleep. What can parents do
to ensure a good night’s rest for everyone?
The first thing you should do is consult with your child’s
pediatrician. It is important to rule out any physical causes
and also to consider any emotional causes (i.e. major changes
in family life), especially if the sleep disturbances have arisen
suddenly. Nutritional deficiencies can also be responsible for
disrupted sleep. Once these have been addressed, you can
consider the following strategies:
Implement a bedtime routine and stick to it. All children
thrive on routine, especially autistic children. Have the child
go to bed at the same time every night, and go through the
same routine every night. The routine should always take
place in a quiet room free of distractions. Dim lighting is
also helpful; install dimmers on the light switches or find
alternative lighting.
Make a warm bath part of the routine. Occasionally include
Epsom Salts in your child’s bath (the benefits include relaxation
and detoxification). Instead of turning on bright lights, try only
a nightlight, or install a dimmer on the bathroom light.
Use the same phrase to say goodnight every night (i.e.
“goodnight, sweet dreams”) – it is your “magic bedtime
phrase”. The child will come to associate this with going to
sleep. Use the “magic phrase” as you put him to bed, and
make it the last thing you say as you leave the room.
Try a weighted blanket, massage, or white noise to calm your
child. You may need to experiment to find out what works.
Talk to your child’s occupational therapist about what other
sensory strategies might also be helpful.
For the child who continues to wake throughout the night,
keep the room dark and quiet. There should be no toys to play
with, or they should be quiet and non-stimulating. If you need
to check on him, do so quietly. If you can, avoid going into the
room (try using a baby monitor, especially one with a camera).
Creating and maintaining a bedtime routine is probably the
single most effective thing you can do. In fact, adults who
have trouble sleeping are usually advised to stick to a bedtime
routine, and also to go to sleep and wake up at the same time
every day (including weekends!). It will also be easier for other
caregivers to put your child to bed if they follow the routine.
You can also try Melatonin or natural remedies. As with
any medication, it is a good idea to do this with a doctor’s
supervision. Tell your pediatrician about all medications and
supplements your child is taking, so that there are no conflicts
with other medications.
It is not healthy for anyone in the family to suffer from sleep
deprivation (believe me, I know!). It is important to address
this. If there is still difficulty, speak to your pediatrician again.
He may be able to prescribe something to help your child sleep,
if you wish. Your pediatrician can also counsel you on strategies
for your particular situation.
Even if your child shows no apparent affection for stuffed
animals, give him one that is only for bedtime. The stuffed
animal is a visual cue that it is time to go to sleep.
Understanding the Hyperlexic Child
Make your child’s bedroom soothing, dark and nonstimulating. Cover the window with heavy drapes and/or
blinds. Remove toys so that he has nothing to play with at
night. If possible, make his bedroom for sleeping only, and
set aside another area of the house for play.
My son Gregor is four and a half years old and loves to read.
Actually, he’s been reading since he was two and a half. At that
time, my husband and I shared a few worried discussions about
what life would be like for Gregor as a “gifted” child. Therefore,
when a very close (and brave) friend of mine suggested
Gregor may have ASD, I was shaken, but immediately began
researching ASD on the Internet.
7
Cheryl Kerr
As I researched, I came across the term Hyperlexia. The more
I read about it, the more I identified with the description of
the syndrome and thought to myself, “They’re talking about
my son”. Hyperlexia is often described as a precocious ability
to read, far above what would be expected at the child’s
chronological age, or an intense fascination with letters or
numbers. Hyperlexic children also have significant difficulty
processing spoken language, and display abnormal social skills.
The American Hyperlexia Association (AHA) web site (http://
www.hyperlexia.org) was invaluable in helping me learn about
this syndrome, as well as the book “Reading Too Soon: How
to understand and help the hyperlexic child” by Susan Martins
Miller. Through these resources, I learned hyperlexia is a
language disorder, not a behavioural disorder, and “developing
language is the key to unlocking the hyperlexic child.” Indeed,
Gregor was assessed with a severe language delay in April 2006,
and speech/language therapy became our first line of treatment.
Without understanding Gregor’s hyperlexia, I don’t think I
would have known how important speech therapy was going to
be for us. Gregor had language (he was speaking in five-word
sentences at an early age) and spoke very clearly. However,
what I didn’t understand at the time was that Gregor was
echolalic— that is, he wasn’t using creative language, he
was just regurgitating useful phrases he had memorized,
such as asking “Do you want juice?” when he wanted juice.
I’ve since learned that, for Gregor, learning English is like
learning a second language. Therefore, when he was first
learning language, he memorized chunks of phrases and used
them when appropriate, without understanding their parts.
Even now, he’ll repeat movie lines when they’re contextually
appropriate, or always make a request the same way.
be used. Unfortunately, I’ve met many professionals
working with ASD children who are not familiar with the
term, let alone able to develop effective programs which utilize
the inherent strengths. Therefore, I try to tactfully educate
them. I suggest they read “Reading Too Soon” and purchase
copies for their resource libraries. I offer ideas such as giving
name tags to other children in the classroom to help Gregor
learn their names. I suggest they write his craft steps out so he
can read them, helping him to remember what he’s working on.
Today, Gregor is doing quite well. His language has improved
dramatically, although he still finds answering “wh” (who,
what, where, when and why) questions and recalling past
events extremely difficult. His peer play is emerging, and he’s
become quite good at answering common social questions. He
also loves sharing Knock Knock jokes and bursts into laughter
after each one. Speech therapy continues to be a priority, but
he is also involved in a PUF early education program and an
activity-based specialized services program. Gregor has an
extensive team that works very hard for him, and he works
even harder. We have nothing but the brightest hopes for his
future and ours.
Gregor received his ASD diagnosis in July 2006. By the time
the diagnosis came, I was prepared for it, or so I thought.
During the delivery of his diagnosis, the words, “autism”
and “autistic” hit me like splashes of cold water. However, a
glimmer of hope for me was confirmation of Gregor’s splinter
skill, hyperlexia. Hyperlexic children have a learning style that,
if understood and utilized, allows them to learn very quickly.
Their visual processing and reading skills are huge strengths to
d child
life as a gifte
8
Saturday Social Inclusion Group
Shannon Mitchell
I am writing once again in support of the Saturday night
social group. As my son Drew has now been attending for
about a year, I feel more confident in sharing some of the
positive outcomes I have observed in my child. Over the
course of the summer, as I spent more time with him in
social situations, I was surprised to notice some positive
impacts of the group on my child. These include both
concrete life skills and social skills.
I have noticed that his confidence and ability in some life
skills has improved dramatically. When he is out in public,
he can now order food and pay for himself much more
effectively. He knows how to use a locker at the swimming
pool and asks for help if he needs it. With just a little bit
of adult direction, he now expresses confidence in
catching the bus, paying and transferring.
ASEA 2007 Annual Family Christmas Party
Millwoods Rec Centre
Sunday, December 9, 2007
1:00pm - 4:00pm
Upstairs Play Room
Please join us for a light lunch and visit from Santa!
Please bring a clearly labeled wrapped gift for your child.
RSVP to the ASEA office (453-3971) no later than December
2, 2007 with the number of people attending from your family
and whether you have a preference for Gluten-Casein Free
food choices.
I have also noticed several social skills developing. The
first is Drew’s ability to laugh off a certain amount of
teasing and accept actions such as being splashed and
dunked at the pool. This has been a source of extreme
difficulty in the past, but he can now accept what
he sees as a “fair” amount of splashing and dunking
in retaliation for his own splashing and dunking. He
is also more comfortable getting into the water and
getting his face wet.
In social situations, Drew has also started approaching
new peers in an attempt to find someone to play with.
He has found playmates at Let’s Play, the pool and
library programming, without adult assistance. He also
expresses pride when he is able to do this successfully
and begins to make new friends. I am thrilled and
somewhat surprised by this new development. My goal
now is to build on his earlier successes by teaching him
how to ask some of these new playmates if they would
like to meet again and exchange some contact information.
mes
Positive outco
Life ski
lls
9
How to Duck a Quack: Some Thoughts
on Evaluating an Intervention
There have been great advances in our understanding and
treatment of Autism Spectrum Disorder (ASD). Despite the
many advances, two things remain unchanged: autism is
life-long, and it is incurable. Some interventions can lead to
great improvements and others can actually cause harm (e.g.,
chelation therapy). If one types “autism therapies” into a search
engine like Google, thousands of web pages appear which are
informative, but can also be contradictory. This article is an
attempt to provide some perspective on the overwhelming
task of sifting through various treatments in hopes of finding
credible and scientifically validated interventions.
Be wary of any intervention that claims results that
generalize across areas. The three areas of impairment in autism
are extremely broad. Social skills provide a great example; there
are many abilities that together result in effective socializing.
According to the National Research Council (2001), which
conducted a systematic review of published intervention
research, effective interventions must be both focused and
educational. That is, the intervention must explicitly teach skills
to improve the specific areas of impairment. For example, if
Rebecca’s social impairment makes her unable to initiate social
play with her peers, the intervention should aim to teach her
specific skills associated with social initiation. As a consumer, if
the intervention you are evaluating does not aim to teach your
child specific skills, it is much less likely to be effective.
In the beginning…
Does the treatment do what it aims to do?
When beginning your search for treatments, it is key to
remember the fundamental deficits of ASD. There are three
core areas of impairment: 1) social skills, 2) communication
skills, and 3) repetitive behaviors. That is, to receive a diagnosis
of ASD, children must have deficits in the ability to relate
socially to others, deficits in the ability to communicate
effectively with others, and show an increase in non-functional,
repetitive and stereotypical behaviors. Knowing this, the
following questions may be asked of any intervention:
If the intervention claims to increase a child’s skill set, the
people promoting the intervention must show evidence that the
abilities of children have improved. As previously mentioned,
interventions must target specific skills (e.g. social initiations
such as greetings). Therefore, evidence for an increase in that
specific skill should be provided. If the intervention claims to
increase children’s ability to initiate social contact with peers,
then those who are promoting the intervention must provide
evidence that the child is initiating more often after
the intervention than they did before. Without such evidence,
we should be skeptical of the intervention’s claims.
Shane Lynch
Does the intervention address at least one of the
three areas of impairment?
In the past, interventions have made grand statements about
what their treatments were capable of achieving. For example,
there have been interventions that have claimed to be able to
change the way that children processes information (visual,
auditory, tactile, etc.). Such a statement is problematic because
unless you have access to a Functional MRI machine, you
cannot test whether brain processing has changed as a result
of the intervention. If change is not observable, you are left to
accept the service provider’s assertion that change has occurred.
What evidence is used to support the claim that the
intervention is successful?
Evidence can come in many forms, such as direct observations,
self-reports, and anecdotal reports. Direct observation involves
seeing the child demonstrate the skill first-hand. Self-report
may include having the child declare that they can demonstrate
the skill. Anecdotal report may include taking someone else’s
word that the child can demonstrate the skill. Although selfreport and anecdotal evidence are informative, they are limited
in that both are open to subjective interpretation and bias.
Thus, anecdotal reports by themselves are not enough. Neither
10
are self-reports. Direct observation, in contrast, allows for more
impartial assessment of children’s capabilities. However, the
strongest evidence is multiple sources of evidence. If objective,
observable data is complemented with anecdotal reports and
self-report information, a strong case is built in support of a
particular intervention.
Further, it should be a requirement of any intervention that
children demonstrate the learned skill under non-optimal,
real-life conditions. If we can observe the child demonstrating
the skill across people and environments, many times in a
row, we have tangible evidence of the child’s progress and the
intervention’s success.
How is success assessed?
The standard in science is to identify upfront what will be
counted as success and what will be counted as failure in an
intervention. Further, a reasonable person should be able to
see the link between how success is demonstrated and the
original goal of the intervention. In the case of autism
treatments, success should be measured by observable increases
in children’s competence and independence. Providers of
interventions should all have the same goal in mind: to work
themselves out of a job. If we are effective, children’s abilities
will be expanding and they will need less and less support over
time. Therefore, success can be measured by the number of
skills that children acquire, and subsequently demonstrate,
independent of adult assistance.
Moreover, when an intervention can offer evidence of
observable, measurable gains in skills across many children,
the intervention has more credibility. Not all children respond
equally to all interventions. Children with ASD are a very
diverse group. If an intervention can demonstrate that it has
been effective with large numbers of children, we can have
greater confidence that the intervention is likely to work with
one’s own child. Many pseudo-scientific (that is, non-scientific)
11
interventions that do not have observable, measurable evidence
for large numbers of children often offer testimonials or
anecdotes for the intervention’s success. Although these tales
are engaging and compelling, small numbers of success do
not provide good evidence that the intervention will work
for others. Consider what personal stories and intervention
failures you are not hearing about. Similarly, be skeptical of
interventions that use scare tactics. They offer unrealistic and
fearful scenarios, rather than logic, as evidence of what could
happen if you do not try their intervention.
Lastly, how do we know the effects are due to the intervention?
Have those who are promoting or studying the intervention
considered alternative explanations like placebo effects or
unintended causes? For example, any child participating
in a structured intervention program is expected to show
improvements over time. However, general improvement over
time is not, itself, evidence that the intervention is responsible
for the gradual change. Ask yourself, what else might account
for the intervention’s success? The very best research that
evaluates interventions uses comparison groups to help rule out
other explanations or determine whether the intervention is
better than other interventions.
In the end…
It is very important that consumers of interventions seek
the strongest possible objective evidence of an intervention’s
success, because our initial impressions color what we see.
When we look for positives, we see positives. When we look for
negatives we see negatives. No intervention is above criticism.
Be skeptical. Your child is worth it.
To be continued…
Shane Lynch
Doctoral Student
Department of Educational Psychology
University of Alberta
How Early Can We Identify Children
with Autism Spectrum Disorders?
Wendy Mitchell
There is evidence that intensive, specific interventions
initiated early in life can markedly improve outcomes for
children with ASD. This evidence has led families, clinicians
and researchers to advocate for earlier diagnosis of ASD.
Some professional groups have recommended universal
screening for ASD, to take place as early as 18 months of age.
In Alberta, there is a new initiative to implement communitywide developmental screening for 18-month-olds in a number
of test sites. Although this initiative does not focus on ASD
specifically, some children identified with developmental
delays may be showing early signs of ASD. It is important
that we are able to recognize these signs so that diagnostic
assessment can happen as early as possible, and so that
children with ASD (and other developmental differences)
can receive the appropriate supports and interventions.
Dr. Lonnie Zwaigenbaum, Co-Director of the Autism
Research Centre at the Glenrose, has experience with a
unique ‘high-risk’ group of infant siblings of children with
ASD. Dr. Zwaigenbaum’s study monitors the development of
young infants from 6 months of age in an effort to develop
a better understanding of the early signs and developmental
patterns associated with ASD. Over the past 5 years, Dr.
Zwaigenbaum and his collaborators have used standardized
assessments and play situations to learn more about how
children at risk for ASD use toys, think, communicate and
relate to other people.
Results thus far suggest that by 12 months of age, children
who are later diagnosed with autism show decreased eye
contact and social smiling, do not consistently respond when
their name is called, show less interest and positive emotion
during social interactions, and tend to visually fixate on toys
and other objects. Dr. Zwaigenbaum indicated that there is
a remarkable consistency between the behaviours that infants
display during study visits and the behaviours that their
parents report on the questionnaires. Surprisingly, the research
has found that these behaviors are not obvious to us (or to
parents) during the first study visit at 6 months,
but appear to only emerge and/or progress between 6
and 12 months. Dr. Zwaigenbaum and his collaborators were
the first group to report this observation, but many other
researchers following infant siblings of children with ASD are
noticing the same pattern.
Data from the Infant Sibling study has also found that children
with ASD whose language and intellectual skills are in the
average range at the time of diagnosis have early signs that are
more difficult to detect. In fact, this group, despite our best
efforts, is less likely to be diagnosed before the age of 3 years
than children who are more developmentally delayed. Learning
more about early signs in children with ASD in this higher
functioning group will be very important, as we want to make
sure that all children on the autism spectrum are diagnosed
as early as possible. Dr. Zwaigenbaum stresses the need for
screening for early signs of ASD at several time points, and that
there should be a focus on early initiation of child– and family–
centered interventions targeting specific functional concerns.
If you would like to learn more about Dr. Zwaigenbaum’s
research or studies currently being conducted at the Autism
Research Centre, please contact Wendy Mitchell at 735-8283
or at [email protected]
Person Centered Planning Workshop –
An Eye Opening Experience
Karen Phillips
During the first week of October I attended, on behalf of
ASEA, the first week of a “mind altering” workshop on Person
Centered Planning. The thirty participants for the workshop
work for service agencies, government programs and support/
advocacy agencies. Ten individuals with developmental
disabilities, including autism, volunteered to work with teams
of three workshop participants to have a person centered plan
developed for and with them.
The idea of Person Centered Planning is that all plans,
decisions, arrangements and activities are based on what is
12
in the best interest of the person being planned for– in our
situation, the adult with an Autism Spectrum Disorder.
service system in Edmonton, I was filled with dread. I realized
that this situation just isn’t acceptable.
As I read and took notes on the forty-five articles I needed to
read before the course started, I realized that Person Centered
Planning was a common sense approach that we should all
be using. I assumed that Person Centered Planning would
be widely used in the adult service system. I had heard it
mentioned often, even though I have not had a lot of dealings
with the adult system— at least not yet.
I understand that I may have been naïve: among the other
people who participated in the workshop with me, those who
had worked in the adult system seemed aware of the many
shortcomings of the current system.
What really turned out to be “mind altering” for me were the
real life situations of the volunteers which we discussed during
the first week of the workshop. I realized, to my surprise and
horror, that decisions are often made with little thought to
what is best for the individual with autism. Instead, decisions
are often based on the best interests of others, such as:
t#VSFBVDSBDJFTXIJDIIBWFSVMFTXIJDINVTUCFGPMMPXFE
t4FSWJDFQSPWJEFSTXIPIBWFTUBĊUPPSHBOJ[FBOELFFQ
happy, and who are having trouble finding staff
I can’t help wondering how many parents have had terrible
experiences with the adult service system as they try to help
their loved ones make a better life for themselves. On the other
hand, are there also parents who have had good experiences
as they have worked with service providers, professionals, and
government programs?
Based on what I have learned and heard during the first
week of this two week workshop, I feel the need to issue
a few warnings:
t8BUDIDMPTFMZUPTFFXIBUJTCFJOHEPOFGPSZPVSBEVMU
child. Drop in regularly and ask others to help you so
that you can check more often
t(PWFSONFOUTXIJDIGVOETPNFUIJOHTBOEOPUPUIFST
and some people and not others
t%POUSFMZPOPUIFSTUPFOTVSFUIBUFTTFOUJBMTFSWJDFT
are offered
t4UBĊNFNCFSTXIPBSFVOUSBJOFEBOEVOGBNJMJBSXJUI
autism, and who simply use the parenting practices they
grew up with when working with autistic individuals
t,FFQDIFDLJOHFWFOJGUIJOHTBSFHPJOHXFMM
t4UBZJOWPMWFEJOBMMEFDJTJPOTNBEFGPSBOEBCPVUZPVS
child, and keep the interests of your child front and
centre at all times
t1SPGFTTJPOBMTXIPEPOUXPSLUPHFUIFSBOEBSFPGUFOHPJOH
off in opposite directions
What became apparent to me is that really bad things can and
do happen in the adult service system: life threatening things,
morale-killing things, things that drive families away, things
that cause the behavior of the Autistic individuals to deteriorate
alarmingly, and things that cause autistic people to retreat
further into themselves.
As I participated in the discussions and learned about the life
situations of ten different adults who are involved in the adult
13
Stay In
volved
Opening Doors Gala Special Feature
Outstanding Volunteerism
Award- Betty McGrath
By Anita Ferri
There are volunteers, and then there
are outstanding volunteers. This year’s
“Opening Doors” Gala Dinner and
Auction was an outstanding event that
was put together almost entirely by
volunteer effort— and believe me, we
appreciate every contribution, as putting
together an event of this caliber requires
a wide variety of talent and input.
Every now and then, there are those who stand head and
shoulders above the rest in terms of their commitment,
dedication, and sheer numbers of volunteer hours.
For the past four auction events there has been an amazing
husband and wife team who have made an outstanding
contribution in a very critical behind-the-scenes role that
begins months before the event. Don and Betty McGrath have
taken on the inventorying and management of the payment
systems for our donation items, as well as recruiting and
coordinating a team that includes dozens of their family and
friends to assist them (and us!) with that task. It’s not often
that the volunteers bring their own team of volunteers, but
with Don and Betty, that’s the kind of commitment they and
their wonderful group of family and friends have made. In
July 2006, we were all deeply saddened when Don suddenly
passed away. Don’s lovely wife Betty, his family, and his
friends decided after his passing that they would dedicate their
volunteerism at the next Autism Gala to the memory of Don.
One of my regrets is that each year when I would thank Don
for his help, and he would be too busy working to hear that
appreciation. This year I was delighted to be able to dedicate
the volunteer work of the event to Don, and to present to Betty
an award for her work. Betty has, in her own right, helped us to
elevate this year’s event and put in more volunteer hours than
almost anyone else on the committee. It became like a second
full time job for her! When we look back on the phenomenal
success of this event, those of us working to put it together
know how deserving Betty is of this award.
Warmest thanks to you, Betty, from all of us at the Autism
Society. I know Don would be proud.
The Gino Ferri Community Builder Award
By Deborah Barrett
You’ve probably all heard the
saying “it takes a community
to raise a child”. For those of
us who have raised children,
we know how true that is.
But when your child has
autism; when your child
does not perceive the world
in the same way as most others; when your child cannot speak
or communicate clearly and doesn’t know how to engage with
others; when your child cannot keep himself safe, not even
when he becomes an adult, community is not always there.
Sometimes community has to be created both for the person
with autism and for family members, who may be so consumed
by caring for the child and keeping him or her safe and healthy
that they cannot reach out to others.
Community needs to be built. It needs to be built by someone
who has the eyes to see the need, the heart to feel it, and the
will to take action. It needs to be built by someone whose
generous spirit guides him or her to make connections in the
community that draw attention to the needs of individuals
with autism and their families. It needs to be built by someone
who will use his talents and connections to create support for
all people affected by autism.
14
This year, the Autism Society is introducing a new award to
honour those who have worked hard to build community for
people and families who have felt autism’s touch. Our first
recipient of the Community Builder Award used his experience
on volunteer boards at the YMCA and Alberta College to help
the Autism Society of Edmonton Area develop an effective
parent-led, grassroots board. He spent 12 years on the Autism
Society board, with 3 years as president. Not only did he serve
locally, he also set his sights on reviving the Autism Society of
Alberta, which had been defunct, to create a provincial voice
capable of bringing matters to the attention of government.
But his efforts did not stop there. This year’s award recipient
used his connections in the construction and engineering
fields to build community awareness in circles that may not
otherwise have come in touch with children and families living
with autism. For the past six Galas, he has been responsible for
the majority of ticket sales and more than half of the donations
of auction items. He has, in fact, been responsible for at least
half the funds these events have raised. In addition, he makes
himself available to current board members for advice and
guidance and continues to support ASEA events. And, through
this all, he maintains a close and supportive relationship with
his grandson, who has autism. We cannot think of a more
deserving recipient. This year, the Autism Society is proud to
name our new Community Builder Award in honour of its first
recipient, Mr. Gino Ferri.
15
Opening Doors Award Recepient: Dr.
Keith Goulden
By Deborah Barrett
If you take a look at the cover of
tonight’s program, you will see a
picture of a door slightly open, with
the light coming through. It is a
symbol both for our Gala Event and
for one of the Autism Society’s most
prestigious awards – the Opening
Doors Award.
It’s the light coming through that
inspires us and leads us to new
opportunities, new discoveries, new
hope, even new life. But when a child is first diagnosed with
autism, the family’s world often turns bleak and grey. To the
family, it feels as if the doors of hope, dream, and ambition
have been closed, the doors to living a normal life slammed
firmly shut.
Since 1992, Dr. Keith Goulden has been opening doors for
parents whose dreams have been shattered. His appointment
to the Glenrose Active Care staff and as Associate Professor of
Pediatrics at the University of Alberta, brought Edmonton a
pediatrician with expertise in the field of autism and a deep
commitment not only to the care of children with autism, but
also to the well-being of their families.
Over the years, Dr. Goulden has contributed to the expansion
of knowledge in the field of autism, and he has worked hard to
ensure services have been extended, not just to pre-schoolers,
but to people with autism throughout the school years. He has
been involved in outreach to schools in the Edmonton area and
travels from Red Deer to Fort McMurray to see children with
autism spectrum disorders and their families. He is the member
of more autism societies than most of us knew existed.
Since Keith was invited to study autism many years ago, he
has been fascinated by the way people with autism think and
perceive. But it’s his compassion for families and children
that really opens doors. For Keith believes that, despite the
diagnosis, families need not only learn to cope, they can learn
to thrive. He goes above and beyond to provide support for
families, even to the point of helping one mother who called
him at home on Christmas Eve. Her child was agitated and
had not slept for several days. He was showing all the precursor
signs of a major epileptic episode, which would have resulted
in a sad and anxious Christmas for everyone. Dr. Goulden
not only listened, he prescribed and ordered medication, and
helped the family determine an emergency action plan to
deal with the behavior. This is not an isolated incident. Dr.
Goulden has been a safety net for many, many families.
His compassion extends even further, though, to continuing
to lend support to families whose children have crossed the
boundary into adulthood. Dr. Goulden continues to work for
the extension of services and networks of many kinds so that
adults with autism can continue to learn, to grow and develop,
and to live better, fuller lives.
When a pediatrician’s commitment to kids with autism
and their families is as strong as Keith’s, it gives families the
courage to find creative solutions and to seek community
partners to ensure that each of us lives good and fulfilling lives.
When faced with the challenge of autism, a dedication such
as Dr. Goulden’s goes a long way toward opening doors and
admitting light.
This evening, it is for his steadfast support, his ongoing
commitment, and his belief in people with autism, and his
faith in their families, that the Autism Society of Edmonton
Area is delighted to present Dr. Keith Goulden with this year’s
Opening Doors Award.
Grant Kurtz, a non-verbal teen with autism, presents the Opening
Doors Award, an oil painting by Grant, to Dr. Keith Goulden.
16
Thank you to all our Gala
supporters!
Master of Ceremonies, Auctioneer
Danny Hooper
Honorary Event Chair
Mike Lake - MP Edmonton-Millwoods-Beaumont
Gala Committee Chairs
Anita Ferri, Lyn Parker
Presentations
Dr. Deborah Barrett
President, Autism Society of Edmonton Area
Terry Harris
Vice President, Autism Society of Edmonton Area
Century Hospitality Group - on your generous
donation of $5000
2007 Opening Doors Award - Dr. Keith Goulden
2007 Community Builder Award - Mr. Gino Ferri
7-DAY CARRIBEAN CRUISE FOR TWO
(Value: $3500)
Provided by
Special Thanks
Design
Backstreet Communications
Poster, Ticket Printing
McCallum Printing Group Inc.
Program Printing
Swarm Enterprises
Linens
Canadian Linen
and Uniform Service
Wine & Champagne
Liquor Depot
Flowers
Flowers by LaTerre
Chocolates
Purdy’s Chocolates
Violinists
Desha and Evannia Miciak
Keyboardist
Scott Jessey
Dinner Music
Ancora
Gala Media Support
Special thanks to Chris Lachance
(owner of Lux Steakhouse
and Bar and Century Grill)
for making ASEA his charity
of choice!
The Autism Society of Edmonton
Area would like to thank Anita
Ferri and Lyn Parker for their
marvelous effort in coordinating
and directing all aspects of
our very successful Opening Doors
Gala!
17
Gala Volunteers
Betty McGrath Event Volunteer Coordinator
Rotarian Larry Johnson - Receipt
System Coordinator
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Plante, Carmen
Ross, Linda
Ryan, Jackie
Steblyk, Peter
Steblyk, Steve
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Tellier, Shayla
Wilkie, Trent
Sincere thanks to The Rotary Club
for sponsoring the receipting process
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Wallace, Maureen
Wallace, Wayne & Noreen
Wasnea Mah Engineering Ltd.
Watts, Alfred
Wendy Y Coburn
Professional Corp
WER Foundation Specialists Ltd.
West Edmonton Mall
West Jet
Westcorp Properties Ltd.
Western Moving & Storage
Westin Calgary
Westin Edmonton
Wilson, Dave
Wilson, Scott & Cathy
Wine About It
Wok & Go Express Chinese Food
Wong, Willie
YMCA
YMCA Castle Downs
Yuk Yuk’s
Community Connections
Offers Help for Adults with ASD
Kara Murray
and surrounding areas, as well as links to some
great mainstream community resources.
According to the Canadian Association for Community Living,
fifty percent of people with developmental disabilities are
interested in becoming more involved in their community.
These same individuals are four times more likely than other
citizens to be excluded from social activities and community
involvement. In order to address the needs and interests of
these individuals, Gateway Association for Community
Living developed a service called Community Connections.
Hubert H. Humphreys once said, “the impersonal hand
of government can never replace the helping hand of a
neighbour.” Community Connections is here to help you
engage your neighbours.
The purpose of Community Connections is to help bridge
the gap between adults with developmental disabilities and
mainstream social groups, leagues and teams, creating the
opportunity for individuals to develop relationships with
other members of their community. These mutually beneficial
relationships serve to enhance the quality of life for people
with developmental disabilities by allowing them to be
active in their community, and to develop and expand their
interests and skills.
GAPS Supported Community Inclusion
Project – Asperger Syndrome
Community Connections is available to assist in making
this process easier. Taking into account an individual’s
interests, we research and liaise between community social
groups, the individual, and the individual’s support network
in an effort to establish social connections that appeal to the
individual. We also work directly with community groups to
help them accommodate people with disabilities and to
educate them on the benefits of inclusion. We do not,
however, offer staffing supports.
Currently, we are working on promotional materials that will
provide people with disabilities and their support networks
tips and strategies to making effective connections with
mainstream groups. We are also developing informational
materials for community groups to assist them in adopting
inclusive practice. These materials will soon be available on our
website, www.gatewayacl.org. This website will also provide
information on upcoming community events in Edmonton
For more information on Community Connections, please
contact Kara Murray at 454-0701 ext 232 or
[email protected].
Karen Phillips
Some months ago I reported on a project being undertaken by
the Autism Society related to the needs of young adults with
high-functioning autism or Asperger Syndrome.
The initial intent of the project was to provide employment
assistance for individuals with ASD. The Autism Society ran
a small supported employment pilot project in the summer of
2005 and hoped to acquire funding to run a larger program.
Finding funding for the project proved to be a challenge, and
the funder for the project, Seniors and Community Supports,
stipulated that funding for the project was dependent on
partnering with other disability organizations. In addition,
it was recommended to the Autism Society that we look at
developing a resource to be used by organizations that would
be providing services for young adults, rather than providing
these services ourselves.
Thus began the research and development of the resource
which, I am pleased to announce, has been printed and is now
ready for distribution. The title of the resource is:
Asperger Syndrome
Fetal Alcohol Spectrum Disorder
The Adult Years
Helping Front Line Staff and Parents
20
Upon the recommendation of the Advisory Committee for
the project, the resource was developed to be helpful for both
parents and front line staff as they, in turn, go about helping
and supporting young adults with Asperger Syndrome to enter
and participate in the social world.
know of anyone who may be interested in learning about this
resource, please contact me at [email protected].
The book is written in plan language and illustrated with
amusing cartoons. At the end of each chapter are examples of
problem situations with recommendations for how to help.
High Functioning Autism/Asperger
Syndrome Parent Support Group
The book addresses the following topics:
This group gives parents of children on the high-functioning
end of the autism spectrum the chance to share common
experiences, listen to speakers and share resources. Group
meetings may have different focuses, including support for
parents and families, advocacy within the school system,
the adult system, or sharing information about upcoming
workshops, books, and educational or government initiatives.
The group deals with some of the tough issues associated with
raising a child who has high functioning autism, but also
celebrates the successes and joys.
t%JBHOPTJT
t#FIBWJPVSBM$PODFSOT
t%BJMZ-JWJOH4LJMMT
t%FWFMPQJOH4VDDFTTGVM3FMBUJPOTIJQTo)FMQGPS'SPOU
Line Workers and Parents
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t#VJMEJOHBOE1SPNPUJOH3FMBUJPOTIJQ/FUXPSLT
t&NQMPZNFOUJO1BJEBOE6OQBJE4FUUJOHT
t1MBOOJOHGPS$IBOHFBOE5SBOTJUJPO1MBOOJOH
t%JTDSJNJOBUJPOBOE0QQSFTTJPO
The book is accompanied by an assessment tool, called The
Operator’s Guide, which can be used by or together with
individuals who have Asperger Syndrome.
A workshop will be held on November 27th, as part of our
Parent Information Series, to talk about the book and how it
can be used by parents or front line staff to assist individuals
with Asperger Syndrome.
Copies are available at the Autism Society office (#101, 11720
Kingsway Avenue) for the cost of printing them, $25.00
(includes book and assessment tool), plus shipping. The book
will also be available through the Autism Society web site at
some point in the future.
Meetings are held at the Autism Society Office, 11720
Kingsway Avenue (or as advertised), on the third Wednesday of
most months, from 7-9 PM. Upcoming meetings will occur on
the following dates:
Wednesday, November 21st, 2007
Wednesday, December 19th, 2007
Wednesday, January 16th, 2008
Wednesday, February 20th, 2008
For more information, please contact Lyn Parker at 413-0518.
We are very excited about this resource, and during the next
year we will be promoting and discussing it through a series of
workshops for parents and community service providers. If you
21
ard
looking forw
Interactions Program at
Belmead School
Treva Lunan
Belmead is one
of many schools
within Edmonton
Public that has
an Interactions
Program as
well as regular
elementary
classrooms. The
Interaction Program provides a special classroom setting
for students who have the diagnosis of Autism Spectrum
Disorder (ASD). There are approximately 20 students with
an ASD diagnosis attending Belmead. A few of the students
diagnosed with ASD are now in full integration, while the
rest spend the majority of their day in one of the two special
classroom settings. The Interaction Program provides a high
staff to student ratio and a small classroom size. Staff in the
Interaction Program have training and experience working
with students who have ASD.
Programming for students in the Interaction Program is
based on each child’s individual needs and capabilities. An
emphasis on communication, social skills and appropriate
behaviour is important to our program because students
with ASD typically struggle in those areas. Other programs
focus on academic and/or functional life skills, depending
on the level of the individual student. We also like to give
students as many experiences as possible to practice safety
skills, mobility and orientation in our community.
We are very excited to welcome students back to school this
fall and look forward to a very rewarding year together.
1st ANNUAL
Children’s Autism Services of Edmonton
Conference
Marriott at River Cree Resort, Edmonton
January 31st-February 2nd, 2008
Keynote Speaker: Dr. Barry Prizant
Dr. Prizant has more than 35 years
experience as a clinical scholar,
researcher and international consultant
to children and adults with Autism
Spectrum Disorder (ASD) and their
families. He has published more than
95 articles and chapters on autism
spectrum disorders and pediatric
communication disabilities, serves on
the advisory board of six professional
journals, and has presented more
than 500 seminars and keynote addresses at national and
international conferences. He is a co-developer of the
SCERTS model for treating ASD.
For more information about Dr. Barry Prizant and the SCERTS
Model see www.barryprizant.com.
For more information or to register for the conference, visit
www.childrensautism.ca
22
Thank You to All of Our Recent Donors!
MOSAIC SPONSORS : $1,000+
Studeon Electric
KALEIDOSCOPE SPONSORS : $500-$999
Anonymous (via Canadahelps.org)
TIFFANY SPONSORS : $100 - $499
TELUS Community Engagement
COLLAGE SPONSORS : 0-$99
Anonymous – In honor of Becky & Arnold Prochnau (via Canadahelps.org)
MEMORIAL DONATIONS
Anonymous – In memory of Brenda Ayotte (via Canadahelps.org)
Carmen Wyatt – In memory of Morris & Carolyn Shaw
Barb Williams – In memory of Carolyn Shaw
Colleen McGhan-Cox – In memory of Carolyn Shaw
Jeanne Shaw – In memory of Carolyn Shaw
Cecil & Myrtle Pallister – In memory of Carolyn Shaw
Bentley School Staff – In memory of Morris & Carolyn Shaw
Art & Sharon Breitkreuz – In memory of Morris & Carolyn Shaw
Suzanne Hayden – In memory of Morris & Carolyn Shaw
Marjorie & Irvine Marshall – In memory of Morris & Carolyn Shaw
Eilert & Jessie Rebne – In memory of Morris & Carolyn Shaw
Karen & Mark Wyatt – In memory of Morris & Carolyn Shaw
William & Ruth Wyatt – In memory of Morris & Carolyn Shaw
Margaret Shupe – In memory of Morris & Carolyn Shaw
Dr. Deborah Barrett – In memory of Morris & Carolyn Shaw
Margaret Marshall – In memory of Morris & Carolyn Shaw
Mark & Joan Ree – In memory of Morris & Carolyn Shaw
Beverly & Alfred Craig – In memory of Bill and Vesna Minor
Ray & Murielle Provencher – In memory of Tim and Kim Nerbas
Your generous donations make ASEA’s work possible!
23
Advocating
for Your Child
Kim Crowder
On Tuesday September 18th, a Parent Information Night
was held at a south side Edmonton church. The topic was
“Advocating for Children with Autism”. Our speaker was
Roma Kurtz, mother of two non-verbal, low-functioning
teenage boys.
Roma began her presentation with a reading of “Welcome
to Holland” in order to convey a sense of what life is like for
the parent of an autistic child. If you are not familiar with the
story, it is easy enough to Google it on the Internet and find it.
Roma suggested that our most important communication
tool could be a Picture Book History. Those of you who enjoy
scrapbooking will be right on board with this idea! These lovely
(and thick!) albums chronicle her sons’ lives. She has photos of
her boys enjoying leisure activities and trying new things; she
suggests that you include report cards, art work, and anything
that is important to you or your child. We were able to get a
good sense of what her boys are like just by flipping through
these albums. The albums, for example, can be used to show
that the child is capable of more things than a teacher might
think, or is normally more active and alert than the doctor
might assume.
Inclusion in school was a primary topic of discussion. In the
early grades, special needs children are often celebrated in the
classroom and are well-accepted by their peers. There are many
ways in which they can participate with the other children,
even if it means making modifications in order for them to do
so. A shift in the dynamics of interactions with peers happens
in the older grades (high school), but Roma’s experience is
that it is not necessarily a bad change, just a different kind
of interaction with friends. It can be valuable to have both
special needs friends and “neurotypical” friends. Special needs
friends can give a particular sense of belonging for your child.
Everyone likes to hang out with people who are “the same” –
there is a certain sense of camaraderie and belonging when you
are with those people. Roma has always taken an active role in
facilitating get-togethers with her sons’ peers.
Please return your completed form and/or donation to:
#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5
We talked about the importance of considering your child’s
strengths and interests when choosing goals. This is your
starting point for choosing goals that are motivating and
achievable. Also, think about what the things are that you
value the most. For example, if you value friendships above all
else, you would choose goals that will help your child build
friendships. Roma also showed us a “Vision Statement”, in
which she very clearly specified what she wanted her son to
experience and gain from his year in school, as well as the
things she did NOT want to happen. This also helps to set
goals and gives ideas for what activities to schedule in
the child’s day.
Events at a Glance
Roma shared with us a wonderful Power Point presentation
that she created as a method of introducing her son to school
staff. She emphasized the things that he enjoys and the idea
that regardless of his challenges, he is still a person with feelings
– which she underscored with lots of great photos. Something
that I thought was really interesting in this presentation was
a slide she called a “Character Pie”. A circle divided up into
many pie slices helps to describe her son. Only one slice of the
pie was given to his autism diagnosis (and any other diagnoses
or challenges). All other slices of the pie identified an interest
or strength. I think it is very meaningful that Roma allowed
only one small slice of the pie to identify her son as someone
with a diagnosis. Although it is part of what makes our
children who they are, it is not the only thing that defines
them. Our children are also people with feelings, abilities,
strengths and interests.
Wednesday November 21, 7:00pm
Asperger’s Parent Support Group
Call the Autism Society of Edmonton Area
(780)453-3971.
Thank you to our newsletter contributors!
Chris Antulov
Karen Bain
Deborah Barrett
Kim Crowder
Anita Ferri
Cheryl Kerr
Treva Lunan
Shane Lynch
Wendy Mitchell
Kara Murray
Karen Phillips
Julie Skibington
Gail Gillingham Wylie
November 2007
Wednesday November 7, 7:00pm
Parent’s Time Out
(780)453-3971.
Tuesday November 20, 6:30pm
Teacher Information Night
(780)453-3971.
Tuesday November 27, 7:30pm
Parent Information Night
(780)453-3971.
December 2007
Wednesday December 5, 7:00pm
Parent’s Time Out
(780)453-3971.
Wednesday December 19, 7:00pm
Asperger’s Parent Support Group
(780)453-3971.
January 2008
January 7th-9th, 2008
University of San Diego Winter Autism Conference – Beyond
“Behaviors”: Supporting Confidence, Competence and Image.
For information or to register,
visit www.sandiego.edu/autisminstitute/.
January 31st-February 2nd, 2008
1st ANNUAL Children’s Autism Services
of Edmonton Conference
Register through Children’s Autism Services of Edmonton
(780) 487-9467
24
Falling into Au
tumn
tism
life with Au
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.
25
2007 MEMBERSHIP APPLICATION
1. THANK YOU FOR YOUR ASEA MEMBERSHIP
Thank you for joining ASEA or renewing your membership for 2007. 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. We have adjusted our
2007 fees for the first time in 8 years to more accurately reflect the value of membership and improve membership benefits in the coming months.
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 _______________
E-mail: ______________________________________________ 2nd/work e-mail: _______________________________________
Occupation / Workplace: ______________________________
I am:
❍ an individual with autism
❍ a teacher/teacher’s aide
❍ a parent
❍ an agency
Occupation / Workplace: _______________________________
❍ 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
Your child’s name _____________________ DOB ________________ Are they autistic? ❍ School _________________________
dd/mm/yy
Your child’s name _____________________ DOB ________________
Are they autistic? ❍ School _________________________
4. TYPE OF MEMBERSHIP ASEA has simplified its membership offerings for your convenience
❍ $60 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 in June and prorated based on when you join.
Donors and volunteers play an vital role in sustaining services and creating new programs.
❍ Visa
❍ MasterCard
❍ AMEX
❍ Cheque
(mm/yy)
Card number __________________________________ Expiry date ____________
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.
Signature ______________________________________________________________
Please return your completed form and/or donation to:
E-mail: [email protected]
26
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Enterprises Ltd.
Return undeliverable Canadian addresses to:
Autism Society of Edmonton Area
Canada Post Publications Mailing Number 40020698

Autism Now - Autism Edmonton

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