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
7 April 2003
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NEW ON THE OAARSN WEBSITE

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AUTISM IN THE NEWS

Just two items this time--to illustrate efforts at best practice on the one hand, and sad realities on the other.

New autism guidance launched in Britain--a model for other countries?
An expert group has published non-statutory national guidelines aimed at improving services for children with autism spectrum disorders (ASD). The National Autism Plan for Children (NAP-C) makes several recommendations to help health professionals diagnose children with autism earlier and encourage multi-disciplinary working. The plan has been developed by the National Initiative for Autism: Screening and Assessment (NIASA), in collaboration with the Royal College of Paediatrics and Child Health, and the Royal College of Psychiatrists. Read this report

The guidelines call for all local areas to set up ASD co-ordinating groups within the next 18 months, in order to review existing services  and identify training and resource needs.  Each local area should eventually have a trained professional with ASD expertise and an ASD-trained teacher to set up individual education plans.

The plan also sets out a timetable for diagnosing the condition – suggesting that children with suspected ASD should receive a multi-disciplinary assessment, with a key worker appointed to the family at the start of the process. A report and feedback should be given within 17 weeks of the start of the assessment. 

In addition, the guidance recommends that all community-based staff who work with children should be trained in ASD awareness, so they can recognise “alerting signals” that may warrant further investigation.

The plans have been published by The National Autistic Society (NAS) on behalf of NIASA. The UK government is due to publish its 10-year Children’s National Service Framework, which will include autism, towards the end of 2003.
 

Disabled forced from home
The story from the South Bend Tribune of how five mentally disabled men were threatened with arrest and forced out of their home on a cold January evening. Until that night, the men had lived quietly and peacefully in their home, working jobs to pay their rent just as their neighbors do. Lincoln Township officials claim the building was unsafe; others say it could be discrimination.

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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 

reminders

.....last week to count yourself in.....
COMMUNITY SUPPORT SERVICES IN GUELPH-WELLINGTON COUNTY--NEEDS SURVEY
-By Kerry's Place Autism Services
-Will help shape the kinds of services that may be provided--for children, adults and families. 
Read letterfrom Gail Hurren explaining the needs survey
See the survey forms which you may print, fill in and mail 
 

Tuesday, April 8th, 2003. 7:00 p.m. in Richmond Hill
LIVING WITH ASPERGER'S SYNDROME
Gary Waleski, An Adult With Asperger Syndrome Talks About His Experiences
Sponsored by Autism Society Ontario ~ York Region Chapter
Location : 11181 Yonge Street 3rd Floor, Richmond Hill,
Refreshments: 30 minutes before Presentation Start Time
Cost: Free to Member families, $ 10.00 for Non-members. 
Memberships available at the door, $ 30.00 annually
 

Saturday morning, April 12, 2003, in Kitchener: 
Planned Lifetime Networks-WWO
presents an Information Workshop:
WHOSE DECISION IS IT ANYWAY?
Living with an adult with developmental disabilities?
Who can decide medical care, personal care and financial matters?
How are these decisions made?
Capacity Assessment and Substitute Decision Making with Elaine Atchison
More information and to register
 

Waterloo County Chapter, Autism Society Ontario
a) Silent Auction on April 12th at Fairview Park Mall. 
We are highlighting collectible and antique  items.  We also have approx. 200
new items.  We are raising funds for summer camp for kids with ASD.
Donations or info. call our hotline at 742-1414.
b) Cycle for Autism on June 8, 2003 to raise funds for summer camp, education and awareness.  It begins and ends at Kitchener City Hall.  There are 5, 10 and 40k routes to be walked, run or biked. Again, same phone number.
 

April 16th, 2003 at 7:30pm 
Autism Society Ontario - Peel Chapter
Meeting at Peel Board of Education for a panel presentation on Adult issues and services related to Autism Spectrum Disorders. 
For more info call (416) 390-9193 or peelaso@sympatico.ca
 

April 25 and 26 (Friday and Saturday):
The London Family Network and Integration Action for Inclusion: London and Area are jointly hosting the Provincial Conference and AGM for both Family Alliance Ontario and Integration Action for Inclusion See more details of the conference program and a poster in PDF format.
 

April 28 - 30, 9-5pm
Inclusion Press presents TOOLS FOR CHANGE workshop
with Hosts Jack Pearpoint and Louise Bailey
College St United Church, 452 College St, Toronto
Hands-on Learning: Graphics, PATH, MAPS, Solution Circles,
Listening, Facilitating
Tuition $500 per person, payable to Inclusion Press
Send cheque with full details of name, address, phone and email
to Inclusion Press, 24 Thome Crescent, Toronto, ON M6H 2S5
Enrolment is limited; register soon!
For more about Tools for Change, see the Inclusion Press website
 

May 5-10, 2003 at Ghost Ranch, Abiquiu, New Mexico
Five-Day ABCD RETREAT for 30 community leaders on asset-based community development. JUDITH SNOW of Toronto, founder of International Association for Inclusive Citizenship, is one of the trainers and describes the event as a "weeklong seminar where we can explore in depth both building contribution and quality lives with individuals from unique differences, and building diverse and peaceful communities from our assets."   See flyer for details
 

May 16 to 18 in Philadelphia: 
DAN! Spring 2003 conference
Click here for a listing of speakers and topics as well as online registration
 

May 30 and 31, 2003: Second National Conference on Aspergers: 
Celebrating our achievements: Setting our sights
Click for conference program
Online Registration will be available after April 1, 2003. 
Metro Toronto Convention Centre
Tel: 416-651-4037
Email: conference@aspergers.ca
Aspergers Society of Ontario website
 

June 20-22, 2003 in Vancouver BC
Vela Microboard Association of British Columbia announces the 
First Training Institute on Developing and Supporting Microboards
Learn more about:
-the intent and philosophy of Microboards;
-the  practical tools needed to develop Microboards; how to support and sustain Microboards; and
-how to assist in creating a healthy Microboard network. 
Please note that this workshop is for people outside BC who wish to set up a network of microboards, rather than a single microboard around an individual.
Cost for the weekend will be $1,000.00 Canadian (approx $700.00 U.S). This fee includes: the Institute; all related materials; on site accommodation for two nights/three days; and all meals from dinner Friday through brunch on Sunday. For more information or e-mail Linda Perry and look up Vela website
 

BIOMEDICAL CONFERENCE
Open Windows Essential Training: 
Opening Windows of Hope for Children with Developmental Disorders 
June 21 & June 22, 2003 
Ryerson University, Toronto, Ontario, Canada
The first conference of its kind in Canada ..... 
"Open Windows Essential Training" is presented by the International Child Development Research Center (ICDRC) in conjunction with the Autism Canada Foundation.
This conference will teach you how to integrate Biomedical, Behavioural, Nutritional and other effective treatment options in a "whole approach" therapy style, so that you can help maximize the potential of individuals living with Autism, PDD and Related Disorders. 
Guest Speakers include: 
    Dr. Jeffrey  Bradstreet, M.D. F.A.A.F.P 
    Dr. Jerry Kartzinel, M.D. 
    Karyn Seroussi 
    Stephen Shore 
    Dr. Lynda Thompson  .....  and more  .... 
In Open Windows Essential Training, Medical Researchers, Behaviouralists, Parents and Clinicians participate in an interactive learning experience designed to educate and equip you for the challenges presented by Autism and Related Disorders. 
Click any of the links below for additional information and to find out how to register
http://www.autismcanada.org
http://www.autismcanada.org/home.htm
http://www.autismcanada.org/openwindows.htm
 

CYCLE FOR AUTISM : Help Solve the Puzzle
Beginning on July 6th, 2003, John Keating and Luc Vandeermeeren, both fathers of children with autism Autism Spectrum Disorders (ASD), will embark on a bicycle journey that will take them from one end of Canada to the other. They will begin the cycle in Vancouver, British Columbia and end in St. John’s, 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. John’s. These events will not only raise funds but increase public awareness as well. Please click on the link above to reach the project's website which is now under construction.

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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
 

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HELPFUL RESOURCES

The National Fragile X Foundation has asked us to provide a link to its  FragileX website. Fragile X syndrome is the most common, known cause of autism. Fragile X is a single-gene disorder on the X chromosome and can be inherited from either one’s mother or father. The DNA blood test for fragile X is better than 99% accurate. The Center for Disease Control conservatively estimates that 50,000 to 100,000 Americans are fully affected and that there are approximately ½ million to 1 million carriers.  Fragile X syndrome is considered to be an autism spectrum disorder. 
National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119-0488, USA
Tel: 800-688-8765
Fax: 925-938-9315
E-Mail: NATLFX@FragileX.org
 

DISABILITY AND ADULT LIFE NEWSLETTER
Online Newsletter by Jackie Marquette
Author, Educator, Researcher

1.      PURPOSE OF NEWSLETTER
I am very blessed that my son Trent who is 26 years old and who has autism has found a purposeful, happy independent life for over two years now. I am offering this online newsletter to explore discoveries, options, and coping strategies with other families as we all journey along the road to community living for our adults with autism and other disabilities. Often what families need most are ways we can help ourselves while helping our adult with a disability journey to independence. Helping families help themselves is an important part of the process.
2.      A MAN WITH AUTISM FINDS INDEPENDENT LIVING
3.      WHAT A FAMILY NEEDS TO KNOW
4.      TRENT’S PRINTS
5.      AUTISM AWARENESS MONTH – TRENT’S CONTRIBUTION
6.      ABOUT JACKIE MARQUETTE, AUTHOR, AND  EDUCATOR:
About her book see  Independence Bound
If you want to receive this online newsletter please email Jackie at:  Jam4independence@aol.com

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. We receive 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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