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
12 July 2003

OAARSN NEWS

Please note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins that are archived on our website. Click for the list of OAARSN bulletins.

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AUTISM IN THE NEWS

ONTARIO WATCH

Child Advocate's office has suffered under Tories: Toronto Star stories 
Children's watchdog probe a sham
Editorial: children deserve a stronger voice
Eves pledges "super ministry"for children's issues [if the Conservatives are re-elected]
Liberals promise stronger child advocate

Closing of 6 group homes for 28 adults with autism in Ottawa
Update on protests by parents and workers

Halton boy receives service dog

Man with autism a noted artist
Danny Muller (29) who is non-verbal and lives in a group home, speaks through his art.
 

OTHER AUTISM NEWS

BC man with autism is wildlife photographer and long-distance swimmer

A life of routine, then grievous loss
The money his father left was allegedly stolen, and his home was sold. The emotional loss may be greater. Update on Ronnie Mich of Philadelphia

Meet my brother
Sarah Peralta (9) of Lexington, MA introduces her brother, Evan, who is eight and has autism.

Struggle for Understanding
Set apart by their odd habits, people with Asperger syndrome may have vast amounts of knowledge but few friends. They just want others to know why.

Especially for Grandparents of Children with Aspergers, by Nancy Mucklow

The Essential Difference: Men, Women and the Extreme Male Brain
A review in The British Medical Journal of Simon Baron-Cohen's new book, in which three kinds of normal human brain are discussed: "empathising" (type E), "systemising" (type S), and "balanced" (type B, which is a meld of types E and S). At its extreme, the author argues, the systemising brain is autistic.

Autism Tissue Program 
works with families to make brain tissue available to researchers who look for evidence of changes in the brain that explain autistic behaviors and can give clues about useful treatment.

Unfathomable humans
Toronto Star review of Mark Haddon's new book, The Curious Incident Of The Dog In The Night-Time, in which Christopher (15 and autistic) is the narrator. 

Guardians of Human Dignity
Occupational therapists are performing quiet miracles by helping people regain their independence...

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar, and 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

this month

CYCLE FOR AUTISM : Help Solve the Puzzle 
Beginning on July 5th, 2003, John Keating and Luc Vandeermeeren, both fathers of children with autism Autism Spectrum Disorders (ASD), embarked on a bicycle journey that will take them from one end of Canada to the other. They began the cycle in Vancouver, British Columbia and will end in St. Johnís, Newfoundland. It will take them 8 weeks to complete this journey. They will stop in many cities along the way. Our goal is to promote awareness of Autism Spectrum Disorders (ASD) and raise $1,000,000 in Canada for ASD research through an
annual cross-Canada Cycle for Autism. The Cycle will begin July 5 to August 24, 2003 with fundraising events held in various cities across Canada including Vancouver, Calgary, Regina, Winnipeg, Toronto, Montreal, Halifax and St. Johnís. These events will not only raise funds but increase public awareness as well. Please click for the Cycle for Autism website. 
 

CANADAN AUTISM RESEARCH CENTRES
Funds raised by the Cycle for autism will support increased Canadian research into autism spectrum disorders, like that described on these websites:

Autism Spectrum Disorders - Canadian-American Research Consortium ( ASD-CARC )

Canadian Autism Intervention Research Network ( CAIRN )
 

CYCLE FOR AUTISM LOG
Saturday July 5th: Vancouver to Hope (Luc writing) 
We're off! After months of preparation, the big day has finally arrived. The official sendoff took place at English Bay in Vancouver. Media coverage was great. CTV News, Citypulse News and The Province newspaper were there to cover the action. Christine Dade, President of Autism Society Ontario, officially sent the riders and crew on their 7,400 km journey ? the first coast-to-coast autism fundraising event ever held in Canada. Ellen Woodsworth, the Deputy Mayor of Vancouver, Ellen Watsworth welcomed us to the beautiful city of Vancouver and wished us well on our journey. The Cycle for Autism team would like to thank Marianne Brown, ASBC event coordinator and Anna Donato, Cycle for Autism program director, for giving us a great sendoff. After John and I dipped our bike tires in the Pacific Ocean, the team said tearful goodbyes to loved ones. Emilie, Bryan and Sara ? I want you to be good for mommy and I'll see you in four weeks. My God that's a long time. I'm going to miss all of you so much. Five motorcycle police officers and two mounted police, on Sam & Harley, escorted us and our motorcade through downtown Vancouver. Pledge riders who rode with us a short distance included a twelve year boy with autism and Ben Kramer, a 47 year old man with autism who will swim around the island of Manhattan on August 13th to raise funds for research and support programs. The route was flat for all of 60 feet before going up a big hill on Davie Street ? a portent of things to come.
Leaving Vancouver we cycled through the most beautiful countryside any of us had ever seen with lush, majestic mountains on either side of the wide U-shaped Fraser valley. We enjoyed a terrific lunch at the Mission Springs
Restaurant and Brewing Company and made a promise to return one day to sample the beer. Chris, the restaurant manager, supported our cause by making our meals complimentary. Thanks also for the nice hats, Chris. Rebecca our waitress was excellent. After cycling 165 km, we arrived at the City of Hope at 7:30 pm. We stayed at the Colonial 900 Motel, run by Jack and Phyllis Randall. They had seen us earlier on TV and gave us a free room for the night. Thanks also to Diana, manager of the Home Restaurant, for giving us great service, huge dinner portions and two complimentary meals.
Day 2: Hope to Merrit  (John writing)
Sunday July 6, we were up early awakening to a beautiful sunny morning. We went for breakfast and while ordering, a couple approached us and asked if we were the one's cycling across Canada for Autism. They had seen us on
television. They were Frank and Sylvia Hutchins from Hope. They told us about their daughter and son in law Joel and Neil Roberts who have a 3 ½ yr old son Adrian who has Autism. They were just a terrific couple who could not thank us enough for what we are doing. They gave us a very nice donation and then also picked up our breakfast bill. Thanks Frank and Sylvia. It was great meeting both of you. Hi to Adrian and his family. Keep the hope and faith, there is a great future!!!!!! 
After breakfast we jumped on the bicycles and headed out onto the Coquihalla highway for what was a day that Luc and I never really expected. The day was nothing but mountains, and I mean mountains. The WHOLE day. When I cycled for 90 days across the USA 2 yrs ago, I never encountered mountains this big for the whole day. There were times when we were climbing up hills almost at the same slow speed transports were going. After a long hard day of cycling, we finally reached Merritt. We cycled 113 KM today up to an elevation of 3,900 feet, all mountains. We stayed at the Best Western. They donated the rooms to Cycle for Autism. This is a great Best Western with very clean rooms and a great restaurant and most importantly, a great HOT TUB which I immediately threw my sore body into. We all eventually made good use of the hot tub. I encourage anyone in Merritt to stay at this Best Western, it's a great place and they really supported Autism. We are just going to sleep now to rest these tired bodies.
We want to say Hi to all our families. I really miss my children Kurtis and Krystal. I think of them every second and can't wait to get home to be with them. I love you two sooooooo much.
 

new announcement for this week

Saturday, July 19th, 2003, in Guelph 
ASO Biomedical Support Group, 2-4 pm
Hear Robin Fraser discuss naturopathic medicine and NAET (Nambudripad's Allergy Elimination Techniques): how they work, how they can help build health, followed by demonstration of NAET, including testing for sensitivities and allergies.
RSVP and for directions: please phone 823-9232 or email ebloomfi@uoguelph.ca
 

Monday, July 21, in Toronto
Social Accounting 1/2 Day Workshop for Nonprofit Accountants
What is the value of our volunteer resources, and how can we document this in a credible way?
How can we use this information to tell our performance story in financial statements, annual reports, in funding proposals, and in volunteer recognition programs?
How can we demonstrate to policy makers and accounting bodies the social value of non-profit organizations?
Merle Cole
The Funding Connection
905-686-0781 or 1-866-746-3696
FAX 905-686-4157
Visit http://members.rogers.com/fundingconnection/

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SPECIAL PROJECTS

9-1-l Protocol and Crisis Plans
progress report by Nancy Cherry of Waterloo
Nancy Cherry of Waterloo has begun a project 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) 
To learn more about Nancy's project, please contact her at phone (519) 884-3309 or email nancy.cherry@sympatico.ca
 

Organic Foods Buying Co-op
A Guelph family has formed a buying club linked with the Ontario Natural Food Co-op. A buying club or co-op is a group of individuals who get together to buy directly from the wholesaler, thus saving money and getting access to quality products. Of particular interest to families following special diets that avoid gluten, casein and other food substances that people with ASD cannot tolerate. If you live in or near Guelph, you might ask to join this co-op. Otherwise, we may be able to connect you with a co-op in your city or region. For more information email gbloomfi@uoguelph.ca
 

Survey of CCAC Services in Relation to Autism Spectrum Disorders
Have you, as a person or family living with ASD, used services available through Community Care Access Centres? How helpful have you found them? Please let us know of your experience. Any information will be generalized, as a basis for advising other families of the value of CCAC-funded services. We will not publish your name or location. Please reply to  gbloomfi@uoguelph.ca

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ISSUES AND ADVOCACY

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

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HELPFUL RESOURCES

Family-Focused Support Model
A model of positive behavioral support for individuals with autism and their families: The family focus process. Positive behavioral support is a comprehensive approach used to address challenging behavior and improve broad lifestyle outcomes that serve to increase the overall quality of an individual's life. In Focus on Autism and Other Developmental Disabilities. Publication date: 2003-07-01

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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.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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