Other’s Point of View:
For and With
Lives with Autism
People who live with autism can seem much more
different than alike. If 20 people with autism were to be gathered in one
room, the differences among them would seem much more striking than the
similarities. This used to be said years ago, when the definition of autism
was narrower and more specific. Now that we have a much broader concept
of autism spectrum disorders, with a prevalence of nearly one per cent
of the population, the range of personalities, abilities and needs is far
greater. Persons with a diagnosis at the high end of the autism spectrum
may seem hard to distinguish from those who are “neurotypical” or non-autistic.
People involved in the autism cause--as persons
with autism, parents and caregivers, or support workers, researchers and
administrators—sometimes seem to be at odds with one another. Some may
be concerned only with their particular need or a specific treatment or
therapy, and seem intolerant of all others. Parents of young children may
describe autism as a monstrous affliction that has to be defeated, while
high-functioning adults with autism want to celebrate the autistic traits
that are part of their identity. When resources seem scarce, funding for
preschool children may mean that teenagers and adults have to go short.
Supports and services may be reserved only for the most high-functioning
(as they have the best potential for independence) or for the least able
(as they need help most). Parents and caregivers may be over-protective
or under-estimate the abilities and dreams of persons with autism. Administrators
and researchers may not consult with persons who have autism, so that research
and service priorities may not meet their real needs.
Yet people with autism spectrum disorders share
some very important differences from other people, especially in social
communication, even if their degree of impairment can range from slight
to profound. With their families and supporters, they have usually had
to cope with misunderstanding and delays in recognition of their special
needs. These insights and experiences should help us all to understand
and support each other better. Let’s do it better in 2004!
greetings and best wishes to all
from the OAARSN
team and from board members
Services for the Autistic
A propos the festive season, persons with ASD are
often made aware of their differences most acutely at these times. Their
sensory differences, food intolerances, difficulties with interpreting
social cues, and sense of being short of friends may all be factors.
For some tips for relatives and hosts of holiday
gatherings who might need a crash course in what to expect from their guest
with autism, click on Dear
Family and Friends.
But music can calm and satisfy many at stressful
times. We commend this good idea:
Chapter offers CDs
1. Variante Harp & Flute
Duo: A collection of classics that represents a range of of music genres
put to Harp and Flute.
2. Cantiques de Noel: An
eclectic collection including popular Christmas songs and Variante's personal
harp and flute arrangements of traditional Christmas melodies. Silent
Night, O Holy Night, 'Twas in the Moon of Wintertime, and many others,
will warm your hearts and hearths during the festive season.
for details and order
now from Nancy Miles in Waterloo!
ON OAARSN'S WEBSITE
Adult Autism Issues in Waterloo-Wellington 22,
December 2003 is now posted in our
Documentation area. Click to read AAIWW
“Striking the Balance – Rights,
Risks and Responsibilities”
Kerry’s Place Autism Services offered a workshop
on this subject before its Annual General Meeting on 22 November 2003.
Click for report
by Gerald Bloomfield
report of Guelph Services for the Autistic.
Please note the wealth of news, announcements and
other links in past OAARSN News Bulletins that are archived on our website.
Click for the list
of earlier OAARSN bulletins.
AUTISM IN THE
grilled on courtroom fight about autism funding
Ontario families with autistic children are fighting
the governmetn's policy in a lawsuit and in human-rights complaints, claiming
ending the therapy at age six is discriminatory and runs contrary to medicare
dogs help autistic children emotionally, says U of G prof
"Through detailed surveys, video footage analysis
and interviews, population medicine professor Cindy Adams is exploring
the science behind the unique human-animal bond that develops between autistic
children and their canine companions." The research is associated with
the work of National Service Dogs, based in Cambridge, southern Ontario.
provides dog for 6-year-old in Lacombe, Alberta
children being taught to recognize facial expressions
A computer program devised by a professor at the
University of Victoria.
Two more stories about the
McCreary Family of Orangeville (from Family Net)
invites others to 'Meet my Brother'
case stocked with sensory gadgets for children with autism
"The Autism Fight"
Parents of autistic children rarely forget the
details of the day they are first given the child's diagnosis," Susan Sheehan
writes in the December 1, 2003, issue of The New Yorker. In the case of
Dan and Regina Wagner, whose son Daniel was diagnosed with autism six years
ago, a few months before his second birthday, the diagnosis also set in
motion a terrible struggle between his parents, program administrators,
and school district officials in Maryland's Montgomery County.
for Precious Minds
The Relationship Development Intervention (RDI)
program aims to help autistic children develop social skills. It is based
upon the model of Experience Sharing developed by Steven Gutstein.
lives productively with autism
An inspiring story about Nancy Henn of Akron,
Ohio, who has severe autism but makes a union wage, carries medical insurance,
pays taxes, and pays for her job coach with her earnings.
students step up to challenge
A good story from Florida about two 18-year-olds
who are "are able to do the job, but they don't know how to fix little
"Some people, long misunderstood by society, are
finding their voice," writes Carolyn Webb. Until recently, many people
assumed that the disabled were inert. That they had to be protected
and spoken for. They didn't have anything interesting
to contribute. They didn't have creative needs." A great story from Australia
that explodes this myth.
Outstanding and Touching
Series on Family With Autism
Beginning in January, Cleveland Plain Dealer reporter
Harlan Spector conducted more than 85 interviews and spent dozens of hours
observing the Augier children for this series.
turns sons into strangers
tough, costly approach they hope helps the boys
effort is never-ending
them back alive: Plain Dealer Editorial
series touched hearts: letters to the editor
II: neighbors respond with gifts to family of autistic boys
adopted boys find a home in one house
Story of the Silcock family of California, 41,
who have adopted 25 boys — boys who have been abandoned, abused, rejected
and usually labeled unadoptable. Some have autism.
British Warning on Antidepressant
Use for Youth
British drug regulators yesterday recommended
against the use of all but one of a new generation of antidepressants,
known as S.S.R.I.'s, in the treatment of depressed children under 18. Their
effectiveness in treating depression in children, they said, has not been
sufficiently demonstrated, and some drugs have been linked with suicidal
thoughts and self-harm in children and adolescents. The one exception was
Prozac. A summary of the findings was published on the Web site of the
British Medicines and Healthcare Products Regulatory Agency at www.mhra.gov.uk
** ** means that
a new posting--an event being announced here for the first time
Some Ontario adults with ASD, who use facilitated
communicating to express themselves and be listened to, plan to meet in
Guelph on Sunday January 4. If you are interested, please phone Beth at
(416) 895-5112 in Toronto or Elizabeth at (519) 823-9232 in Guelph.
Saturday, January 10, 2004, 9-12 noon, in Kitchener
**NLD Parent Networking-Support
Group of K-W presents Parent Advocacy Workshop**
Lindsay Moir retired from the Ministry of Education
in 1997 and now focuses on assisting agencies, associations and parents
in obtaining appropriate special education services for exceptional students.
His workshops are informative, up-to-date and on-target for addressing
the needs of exceptional students.
72 Victoria St. S. Suite 201, Kitchener, Ontario.
$15.00 / person
For more information, or to receive a registration
form, contact Cheryl at firstname.lastname@example.org
Course on Assistive Technology**
Five weekly sessions from January 16 to February
to learn more and to register
of more events on OAARSN Bulletin
Board and Calendar, and our archive
of past OAARSN news bulletins.
submissions for this news bulletin or for the OAARSN Calendar and Bulletin
Board in plain text format by email to email@example.com
with "announcement" at the beginning of the subject line.
details of the following as BRIEFLY as possible:
Speakers and Topics of Event
and Location of Event
information to learn more about event
Do Not Send Files Or Brochure Attachments
OF SPECIAL PROJECTS
Parental Perspectives on
Autism: Research Project
Leanne Mercer is currently
finishing the last year of her Masters at the University of British Columbia.
She writes: "For my thesis I am looking at parental perspectives on Autism.
I have been involved in Autism research for a number of years and being
part of the parent advisory group in Ontario I found that parents have
invaluable insights on contributing factors of Autism; insights that health
care professionals may not have regarded in the past. I have developed
a questionnaire to document ideas parents may have regarding contributing
factors to Autism in order that research can be explored in directions
that have not been considered before. My questionnaire takes about half
an hour to complete. This is the URL link to the web-based version of my
questionnaire, as well as the paper version in Word. I would greatly appreciate
it if you could pass it on to interested parents." Click
Ms. Leanne Mercer (M.Sc. Candidate) and Dr. Suzanne Lewis
Co-investigator: Dr. Jeanette
Holden and Ms. Susan Creighton
of British Columbia, Vancouver, BC and Queen's University, Kingston, ON
Leanne Mercer, B.Sc., Department
Of Medical Genetics; Children's & Women's Health Centre of B.C.; 4500
Oak Street, Room B208; Vancouver, BC Canada; V6H 3N1
Fax: 604-875-2376 Phone:
See also: Funding
Issues--in OAARSN Discussion Boards and Topics. Press the Communications
bar on OAARSN’s main page
then choose Discussion Area
Individualized Funding: The Time is Now!"
February 20 to 22, 2004 at the Inn on the Park
The goals are:
- To develop an action plan for implementing IF
in Ontario; and
- To develop strategies for building the capacity
of families & communities for citizenship & IF.
Key stakeholders from all parts of the province
are invited to think carefully about who needs to be invited in order to
create and train a diverse, energetic and motivated leadership team. Please
contact Judith Snow. Phone: 416-538-9344 or Fax: 416-516-1691
FROM THE FRONT
HELP AND SHARING EXPERIENCES
adults with autism is usually negative. OAARSN receives many appeals for
advice on where to turn for help--with diagnosis and assessment, advocacy,
planning for the future, alternatives to approaches that are not working.
There are virtually no obvious sources of help for isolated adults with
autism and their caregivers.
We know that
some adults and their families and caregivers are heroically using what
resources they have to achieve some successes with their challenges. Some
can report remarkable progress. We invite you, as an adult or caregiver
living with autism, to share your problems and your success stories, if
you think others might help or benefit.If you wish, we will not publish
your name or email address. You may send a message to firstname.lastname@example.org
for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing
the Communication bar on our main