ON OAARSN'S WEBSITE
all the adults gone?
We were recently invited
to prepare a display and brochure on Adults with Autism for the Ontario
Ministry of Education's conference on Teaching Students with Autism: Enhancing
Capacity in Ontario Schools. Click
for the full text. We included a table of the
estimated prevalence of autism in various age-groups of the Ontario population,
according to two rates--"classic" autism or 1 in 2,222 of the population
(the rate assumed until the past few years) and the wider concept of autism
spectrum disorders affecting 1 in 150 people. If we use the classic rate,
an estimated 3,780 Ontario adults are affected (compared with 1,350 children
and teens up to age 19). If we consider the wider autism spectrum, there
could be more than 56,000 adults compared with 20,000 children and teens.
We all hear a great deal
about the needs of autistic children and OAARSN supports the claims of
early and effective intervention strategies for them. But why don't we
hear about, and why are we not concerned with, all the adults who must
outnumber the children?
During the summer, some of us wrote in support
of efforts to release a man with autism from Centrapoint in Saint John.
OAARSN also receives appeals on behalf of other adults with autism who
are incarcerated, receiving no helpful treatment, and (in the opinion of
family and friends) regressing. Examples in Ontario include men in North
Bay and Niagara Region, and we have heard of others in the US. This bulletin's
From the Front Lines section features the story of efforts by the Cucek
family of BC for their son James (18).
It makes some difference when family members are
involved in the advocacy efforts. However, once a dependent person comes
under the jurisdiction of the courts or of the Ontario Public Guardian
and Trustee (or its equivalent elsewhere) and spends months or years in
some form of incarceration, it is very hard to make any change. For one
thing, the person may have regressed so far that everyone may be too frightened
to try a more humane approach.
A concerted strategy is needed, involving family,
friends, advocates, humane professionals, to create a much better living
environment and opportunities for self-expression and relationships with
friends. We suggest that our concept and mechanism of an aroha--an incorporated
entity for personal empowerment and support--could help to provide the
safeguard that the authorities would want to permit a change. Resources
would be needed to create all elements of an better life. But the financial
costs would be lower than continued incarceration and justified by the
chance to give a better life to someone tortured by frustration, pain and
Certainly, proactive use of person-directed
plans, circles of friends and family, individualized funding, and aroha
entities of personal empowerment and support, could save significant numbers
of vulnerable adults from the desperate plights that are now being reported.
Please note the wealth of news, announcements and
other links in the weekly OAARSN News Bulletins that are archived on our
website. Click for the list
of earlier OAARSN bulletins
and find the most recent:
AUTISM IN THE
highlight X factor in autism
"A part of the brain that is key to reading expressions
in people's faces and which is affected by the X chromosome could give
a new insight into the causes of the disease..."
does the autistic brain work?
An autistic teen helps brain researchers take
on the mysteries of mind. From the PBS program Closer to Truth.
problems in children with autism
From The Exceptional Parent, August 2003
Clinic study shows melatonin helps alleviate violent sleep disorder
EYPD 2003 AWARENESS CAMPAIGN NEWS
Now on the GOOD PRACTICE Forum: HUMAN RIGHTS and
LEGISLATION DISABILITY AND NON-DISCRIMINATION LINKS. Legislation at international
and national level exists to defend the Human Rights of people with disabilities
and, in the case of discrimination, provides the grounds on which to demand
that Standards of Good Practice become the norm rather than the exception.
Visit the new interactive pages of the GOOD PRACTICE
Forum. Find out about Human Rights and Legislation and post your
comments. This forum and the Lisboa 2003 - Calls for Questions Forum will
close at the end of September. Take this opportunity to help to improve
the quality of life of people with autism and their families by making
your voice heard.
Charlotte Moore's final Mind
the Gap column for The Guardian, based on her experience with autism
in two of her three sons. She is writing a book, to be published in 2004,
about autistic children.
fail Asperger's patients
A report from Britain that begins: People suffering
from Asperger's syndrome are not getting the help they need because doctors
are not accepting the diagnosis.
school bullying lead to crime?
Bullying is often more than a prank by a child
who’s going through a phase. Rather, it can wreak havoc on victims and
be a warning sign of more troubles to come, according to a report released
Thursday. Children and teens with autism are often victims of bullying.
makes autism studies child's play
A new computer game developed by Edinburgh scientists
is helping autistic children in the city overcome communication problems
to improve their quality of life.
Autism Awareness Campaign
in South Asia
Ivan and Charika Corea of the have appealed to
the Heads of State of SAARC in South Asia to take urgent action to help
and support the thousands of autistic people living in the region. They
have made strong representations to the Prime Minister of India, Shri Atal
Bihari Vajpayee and the President of Sri Lanka, Chandrika Bandaranaike
Kumaratunga. There has been a huge increase numbers of people with Autism
and Asperger's Syndrome in South Asia and the majority do not have public
services in health, education, specialist speech therapy and respite care.
Autism Awareness in North
Metin Bereketli, the artist who generously donated
one of his originals to Artism for Autism last weekend, will have his work
displayed on "Friends" on NBC on Friday Sept
26, 2003. Look for the painting hanging up in "Central Perk."
You may also order his Reaching Out" poster donated
to the event organized by The Autism Autoimmunity Project (TAAP). View
The Autism Autoimmunity Project (TAAP) is a non
profit charity dedicated to obtaining funding for independent research
addressing immune and immunogenetic abnormalities in autism. Please
visit the TAAP website
for more information or phone 1-800-939-TAAP.
SOME GOOD CANADIAN
club designed for people with autism
A love of cooking and her experience as a parent
of an autistic child prompted Penny Gill of Dundas to establish a cooking
club for people with the disorder.
A FamilyNet story about Megan McCreary (10) who
has two brothers on the autism spectrum, featured in a video produced for
the Autism Society Ontario to promote Toonies for Autism Day. Megan is
also a partner in the business called Common Senses, which designs Fidgitkitz,
a collection of affordable sensory toys for children who have autism.
The Autism Collection of
the Kitchener Public Library will be officially launched on Tuesday
evening, October 21, from 7 pm. The collection is a special, regionally-accessible,
resource of materials in all formats intended for the informational, instructional
and research needs of the general public on this disorder. It has been
made possible through the generous donation of the Waterloo Wellington
Autism Services organization. People who live outside Kitchener can request
a Limited Access Borrower’s card to use the Autism Collection, and materials
may also be requested through Inter-Library Loan. Click
for more details
OF EVENTS OR SPECIAL PROJECTS
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 firstname.lastname@example.org
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
the next few days
September has been Autism Society Ontario's month
to raise funds and awareness through the LCBO's program
at the cash registers in their stores across Ontario. It would be
most helpful if friends of the autism cause, when visiting your local LCBO,
1) check to see if our card is in the coin box
at the register
2) if you feel comfortable, ask the manager why
it's not there if it isn't and then let us know so we can send them another
3) if you do see it, reinforce the fact that it
is there and if you're in a busy line, be sure to drop a few coins in to
draw attention to it.
Autism Services: Workshops in Central West Region
July-December 2003 Click
for more information about all these events
Events are free and most will be held in the KPAS
Resource Centre in Brampton, unless otherwise stated.
October 1, 7pm to 10pm in Mississauga
Autism Society Ontario:
Peel Chapter's Annual Agency Panel on Services in Peel.
At the Peel Board of Education, 5560 Hurontario
For more info call 416-390-9193 or email email@example.com
October 18, 2003, in Whitby, Region of Durham
Current Directions and Findings
in Autism Research
Featuring Guest Speakers Dr Wendy Roberts and
Dr Jeanette Holden
Where: When:Saturday, October 18, 2003
Where: Durham District School Board Auditorium,
400 Taunton Road East, Whitby
Time: 9:00 a.m. - 3:30 p.m.
Cost*: For ASO members**: $10 Parent/Individual
with ASD, $25 Professional
For non-members: $15 Parent/Individual with ASD, $30 Professional
* Includes lunch. **Annual tax-deductible membership
of $30 (parent/individual) or $50 (professional) may be paid at the door.
Please note that registration for this workshop
is BY MAIL ONLY and will be confirmed only upon receipt of payment. Click
for registration form and more details.
Tuesday, October 21, 2003, 7-9 pm, in Kitchener
of New Autism Collection at Kitchener Public Library
The unique collection of books, videos and other
information about Autism Spectrum Disorders, made possible by a generous
grant from Waterloo Wellington Autism Services, is to be launched during
Ontario Public Library week. Click
for more details
October 21 until November 21, 2003, in Toronto
ARTIST ALERT: Abilities
Festival: A Celebration of Disability Arts and Culture
Abilities Festival is offering as its inaugural
event "Connections," a month-long visual art exhibition and sale. It will
run at the Carrier Gallery, which is housed in the Columbus Centre, 901
Lawrence Avenue, at the corner of Dufferin Street in Toronto. The gallery
is open to the public every day and all are invited. The Canadian Abilities
Foundation, on behalf of Abilities Festival, invited artists with disabilities
to submit their work for consideration to this juried exhibition and sale.
For further information, please visit the website
or phone 966-0393.
Saturday, 25 October 2003, all day
Dufferin Chapter of ASO:
1st Annual Symposium on
for full program and registration form
October 25 to November 15
Lifetime Networks: Autumn Workshop series
Four Saturdays mornings, in Kitchener
Planning a Good Life Now
Oct. 25: Planning financial security
Nov. 1: Planning a home of one's own
Nov. 8: Planning for after we’re gone
Nov.15: Planning with our disabled children (capacity
assessment, powers of attorney, and supported decision-making.
Click on heading for more details or phone 519-746-1188
or email firstname.lastname@example.org
Saturday October 25th, 2003, in Toronto
Annual Conference of Ontario
Association for Families of Children with Communication Disorders
Thanks to the generous support of the Hospital
for Sick Children Foundation, this is the largest event OAFCCD has ever
organized. Speakers include:
-Carla Johnson, Associate Professor, Speech-Language
Pathology, University of Toronto on the long term impacts of a communication
-Kathy Schaffer, Ministry of Education Special
education Project, on Individual Education Plans
-Ginny Marx, SLP and Karen Rolston, Teacher with
the Kindergarten Language Program at the Toronto Catholic District School
Board on phonological awareness.
-Dr. Maria Kokai-Czapar, Psychologist, Deaf and
Hard of hearing Program, Toronto Catholic District School Board on
the challenges of growing up with a communication disorder
for flyer and registration form
October 25 & 26 in Toronto
WORKSHOPS by Dr Patrick
McGreevy, at University of Toronto, St. Michael's College
October 25: TEACHING APPROPRIATE SOCIAL BEHAVIOUR
TO CHILDREN AND ADULTS WITH
AUTISM AND OTHER DEVELOPMENTAL DISABILITIES
October 26: INTENSIVE TRAINING IN VERBAL BEHAVIOUR
- TEACHING LANGUAGE TO
CHILDREN AND ADULTS WITH AUTISM AND OTHER DEVELOPMENTAL
Registration and Information: email Brookfield
Programs at email@example.com
or telephone 416-999-3266.
Please send / leave a message and someone will
get back to you as soon as possible.
November 8, 2003, in Guelph
2003 "Rock Star Gala"
in Peter Clark Hall, University of Guelph, as an autism fundraiser.
Organized by Len
Kahn in support of Autism Society of Ontario, Wellington County Chapter's
summer programs and the new Stephanie Home, a local group home for autistic
December 10 - 13, 2003, in Chicago, Illinois
2003 Annual TASH Conference
The TASH Conference is the conference to attend
to learn about the most progressive policy and practice issues affecting
people with disabilities, their families, support providers, and advocates.
Participants can choose from a menu of over 450 sessions showcasing the
most progressive thinking, practices, and research in the areas of Young
Adult and Adult Services and Supports, Inclusive Quality Education across
the Lifespan, Ethics, Values and Rights, and more!
Early bird rates are good through Sept. 30th.
for details To
See also: Funding
Issues--in OAARSN Discussion Boards and Topics. Press the Communications
bar on OAARSN’s main page
then choose Discussion Area
Please also see the items
under From the Front Lines (next section)
Comment on Ontario's announced
"I've read somewhere that the BRIDGES initiative
is mostly social training for social skills that probably serve the political
caregiver civil-servant more than anybody else. My children want
to become independent and self-sufficient in this respect!
That's what I want for them as well, what they want for themselves, with
the understanding that comes from the truth. Does that seem like
what BRIDGES is about to you? Also, related to this issue, I heard
in a recent news blurb that Premier Ernie Eves suggested that the focus
would be on what's best for the general public in education and not special
interests in this respect. Is that "new-speak" meaning that the emphasis
is now off special-needs at this "election time"? What are we to
make of that? and of politics, in general?... Does the "amount" of the
BRIDGES initiative even seem proportionate to the epidemic growth of autism
reported from international sources? Does it equal what we paid into
it, or what society should invest into it for its own long-term best interests?
I think not... Where is the "true" concern, initiative, and understanding
for autism and the disabled in this regard? It seems more likely
that we are being bought by "token" charity and something of a lie... with
the BRIDGES program and politics generally... getting less than what we've
worked hard and paid for and certainly much less than what we need and
our children and future deserves."
It doesn't cost more to have a better life.
Make Individualized Funding an option in Ontario!
Share this poster produced by the Family Alliance
A new essay by John Lord in the series, Periodic
Updates from the Individualized Funding Coalition of Ontario. "Understanding
Individualized Support: The Power of Independent Planning and Facilitation."
Announcing the SSAH Coalition’s
new official website at www.ssahcoalition.ca
"Our activities and efforts focus to improve this
vital program which serves 18,500 Ontario
families and individuals daily. This web site will act as a resource of
information. It will provide the opportunity for families to share their
stories, the good and the bad about SSAH. We hope to document the best
practices and share new ideas with you about how to use SSAH more effectively."
Please also find possible questions that you can
ask your candidates before the upcoming election next week on October
2, 2003. Please exercise your right to vote. It is important that our voices
in support of the SSAH program be heard.
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
Note: we hope to feature
some more new books in the next bulletin
of Autism Society Ontario now has its own website.
Inter-University Disability Issues Association is an association of
disability service providers from Universities throughout Ontario. Working
together, Universities can share ideas and strategies to overcome issues
and problems, allowing disabled students across Ontario to succeed in post-secondary
Heinmiller's website: Asperger's Syndrome: Positive or Negative?
Mark eagerly seeks employment in the area of Library
Sciences, ideally in a university environment, having just qualified with
his MLIS at the University of Western Ontario. If you have any suggestions,
please let OAARSN know and we'll pass your message along.
Lindsay Moir (Education Consultant) writes a weekly
Q & A column at Family Net on special education issues. View this
week's column View
with Special Needs
is a new website created over the summer by the
Ontario Ministry of Community, Family and Children's Services.
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.
family fights for program for son James (18) in BC
"James Cucek plays piano beautifully although
he has never had lessons....but is not playing as much as he used to because
of the pain he suffers while taking various prescription medications. Sometimes
he has to be hospitalized to be stabilized on medications. [His parents]
watch helplessly as James crawls along the hospital corridors."
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