ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

See our archive of past OAARSN news bulletins.

Send news, announcements and comments to gbloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

 

NEWS BULLETIN
26 May 2003

GUIDE TO THE OAARSN WEBSITE

Note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins which are archived on our website. Click for the list of OAARSN bulletins to the end of March, and note the following recent links:
April 7, 2003
April 14, 2003
April 21, 2003
April 28, 2003
May 5, 2003
May 12, 2003
May 19, 2003

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AUTISM IN THE NEWS

New Montreal clinic designed to help autistic children
The Montreal Children's Hospital has launched its Autism Spectrum Disorders Program designed to provide a whole range of services to autistic children and their families.

Autism is no match for Aaron's determination
The story of Aaron Grimm's journey through high school in Wetaskiwin, Alberta and his graduation.

Autism's little brother
A very good story from California about Ben who has Asperger's Syndrome.

Book review The boy who could not tell a lie 
For The Telegraph (UK) Carol Ann Duffy reviews ..."a beautifully written – and beautifully published book [about Asperger's], suitable for 11-year-olds and upwards... Haddon is to be congratulated for imagining a new kind of hero, for the humbling instruction this warm and often funny novel offers and for showing that the best lives are lived where difference is cherished."
Title: The Curious Incident of the Dog in the Night-time  Author: Mark Haddon
Publisher: David Fickling/Jonathan Cape, £10.99.  ISBN 0224063782  270pp

Britain's Channel Five is making a TV drama about the alleged link between autism and vaccines. "Hear the Silence" will be televised in the autumn.

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar
See our archive of past OAARSN news bulletins.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event 
 Contact information to learn more about event 
 Please Do Not Send Files Or Brochure Attachments 

new announcement

Friday, June 20 and Saturday, June 21, 2003 in Cambridge, Ontario.
Autism Society Ontario's Annual Autism Conference and General Meeting
Guest presenter and keynote  speaker - Dr. Kathleen Quill. 
Program and registration form
For more information call 416-246-9592 or mail@autismsociety.on.ca

June 21 & 22, in Vancouver
ANCA Foundation, 4th annual conference
Discovering the autistic transformation: 
Empowering the autistic community
Guest Keynote Speaker Dr. Lars Perner, self advocate
(Professor of Marketing, Riverside, University of California)
Guest workshop leader Phoebe Murer, self advocate
(Artist, writer and college student majoring in psychology at Arcadia University, Pennsylvania)
Panel of self advocates (Local AF members)
Early bird registration deadline: June 6th, 2003
Limited space available (60 people)
For autistic teens & adults and families, professionals and paraprofessionals involved in raising, supporting and educating autistic individuals.
*Certificate of Attendance – each participate will receive a certificate for attending all workshops at the conference.
To register: call 604-802-2622/email: anca_autism@telus.net
Visit the ANCA website

October 17 and 18, 2003 in Edmonton, Alberta
Keys to the Treasure Chest 
4th annual conference featuring Carol Gray and Dr Tony Attwood

November 21-22, 2003 in Montreal, QC
4th International Medical Conference on Autism in Quebec
Autism 2003 - Understand, Act and Heal
Contact: ATEDM (Autisme et troubles envahissants du développement Montréal)
Autism 2003 Tel: 514-524-6114 Fax: 514-524-6420 Email: atedm@bellnet.ca
 

updated notice
CALLING ALL ARTISTS - 
MINISTRY OF EDUCATION CONFERENCE ON AUTISM
An Opportunity to showcase artistic talents of Ontario students with ASD
Autism Society Ontario is hosting a two-day display of the artwork of students with ASD at the Ministry of Education's Conference on Autism on September 10-12, 2003. 
Artwork due in June/July. If you would like to submit a piece of work for consideration, please contact Jean Woolford at ASO's provincial office: 416-246-9592 x 23 or by email jean@autismsociety.on.ca as soon as possible. 
 

previously posted, in brief:

May 30 & 31, 2003 in Toronto
2nd National Conference on Aspergers Syndrome
Click for details

Tuesday 3rd June 2003 in Kitchener
Annual General Meeting of Waterloo-Wellington Autism Services
More information

June 10, 2003, in Hamilton
Canadian Psychological Association and Ontario Psychological Association present Community Speaker Series on "Some ABCs of attention, learning and behavior in children" with Dr Tom Brown and Dr Susan Bryson. Free admission.Click for flyer

June 12 & 13, 2003 in Toronto (at Ryerson University)
Results Based Management and Evaluation Workshop
presented by Harry Cummings and Associates Inc.(HCA) of Guelph.
For workshop information  Visit the HCS website

June 21 & June 22, 2003 
Ryerson University, Toronto, Ontario
BIOMEDICAL CONFERENCE 
Open Windows Essential Training: 
www.autismcanada.org   Call (905)-332-4766 

Autreat 2003, June 29-July 2, 2003, 
in the Adirondack region of New York State.
Autreat is a retreat-style conference run by Autism Network International. 
Click for more information and contacts

July 4-6, 2003, in Kingston Ontario
5th Canadian Fragile X Syndrome and Autism Spectrum Disorders Conference
Click for Conference flyer

July-August 2003
Cycle for Autism updated website 
Please note the new material on autism research objectives 
Email: cycleforautism@sympatico.caTel:905-832-3959
 

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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area
 

SPECIAL SERVICES AT HOME IS 21 YEARS OLD!
LET'S KEEP IT EFFECTIVE! 
This individualized form of funding is a popular and effective way of providing some flexible help to families who support their children and adults with special needs. At last count, the Ontario Ministry of Community, Family, and Children's  Services spent 6 per cent of its $1 billion budget to provide 18,500 families with an average $3,570/year.

  • But there are more than 1,000 families on the waiting list
  • Last year more than $2 million (that has been allocated to SSAH) was diverted to other purposes. 
  • Many families who support adults at home don't know they could get SSAH dollars
  • Families who live with autism spectrum disorders should apply for increased funding
The SSAH Coalition invites you to urge the Ministry to increase SSAH $$$$ and thus the ability of families to cope and improve their children's and adults' quality of life. Even if your family is doing all right, please speak up for the families, children and adults who are not getting enough help yet. 

Click to reach PDF files about SSAH and the campaign to send a huge number of Father's Day Faxes to the Minister.
Message from the Special Services at Home Coalition
SSAH: First Choice News
Father's Day Fax to the Minister advocating more SSAH funds
please download, print, complete and fax in the week preceding Father's Day on June 15.

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HELPFUL RESOURCES

DISABILITY AND ADULT LIFE NEWSLETTER
Online Newsletter offered by JACKIE MARQUETTE, author on Independence Bound (2002) and mother of Trent who has made a successful transition to life in the community.
1) PURPOSE OF NEWSLETTER
2) WHAT A COMMUNITY COACH CAN OFFER
3) TRENT’S PRINTS
4) MEDIA COVERAGE
5) AUTISM ONE CONFERENCE
6) ABOUT JACKIE MARQUETTE
Email Jackie: Jam4independence@aol.com

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9-1-1 Protocol and Crisis Plans 
Nancy Cherry of Waterloo has begun a project called "9-1-1 Protocol and Crisis Plans" with the hope of accomplishing several things: 
1. developing a template for calling 9-1-1 should the primary caregiver be unable to make the call 
2. registering with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
3. registering with the local hospital or crisis clinic to avoid the intake procedure when dealing with an out-of-control individual who has special needs and may be non-verbal 
4. finding a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement) 

Nancy wants to reach individuals, families and other primary caregivers who have stories to tell about handling crises of the kinds suggested in the goals above. She writes: "Family Net has very kindly offered to help with this project. We need to interview families over the phone who have had experience with safety issues. We would like their personal stories as well as the kinds of changes they would like to see happen in the province. Success stories interest us as well. If any families have put special measures in place, we would like to hear how they made arrangements."

If you are willing to have a phone interview or otherwise share your experience, please contact Nancy at phone (519) 884-3309 or email Nancy Cherry <nancy.cherry@sympatico.ca> 

Nancy is also working on contacts for the Ontario Association of Chiefs of Police and the OPP, and would appreciate any leads. 

NOTE THIS HELPFUL RESOURCE
Protecting the Child or Adult with Autism: Information for Parents and Other Caregivers 
WHAT YOU NEED TO KNOW---- 
WHAT YOU CAN DO---- 
if your loved one gets into these situations: 
Wanders away * Doesn't fear danger  * Upset by new situations * Public outbursts *  Can't I.D. self or explain what's wrong * Dangerous obsessions  * Crime victim * Crime suspect 
Click for guide produced by the South Carolina Autism Society--downloadable in PDF as leaflet. 
 

TRACKING DEVICES THAT COULD GIVE EVERYONE PEACE OF MIND 
as our children and adults explore their environs. 
(with thanks to Nancy Morrison)

Please comment if you have experience, or suggest other devices.

1. Digital Angel seems promising, but they have suspended taking orders due to demand at the moment, Also , like other devices, there is a delay in providing monitoring support in Canada. http://www.digitalangel.net/

2. IDs that individuals can wear on parts of the body, such as the ankle.
http://www.roadid.com/ankle_learnmore.asp

3. GPS PERSONAL LOCATOR FOR CHILDREN by Wherify 
http://www.wherifywireless.com/prod_watches.htm
"Wherify's GPS Personal Locator helps keep loved ones safe by combining Wherify's patented technology with the U.S. Department of Defense's multi-billion dollar Global Positioning System (GPS) satellites plus the largest 100% digital, nationwide PCS wireless network." 
A portion of your purchase/subscription price could be donated to Cure Autism Now.

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about 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.

Man with Asperger's speaks out to parents
When Gary Waleski learned he had Asperger’s syndrome, he was relieved. His life started making sense. His advice to parents: "Definitely don’t look at your child as doomed."
 

If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page

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