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
22 November 2003

NEW CONTENT ON OAARSN'S WEBSITE 

Books on the Autism Spectrum
OAARSN's November book review: Spirituality and the Autism Spectrum: Of Falling Sparrows, by Abe Isanon (Jessica Kingsley Publishers, 2001).  Read our review

This is one of the many new books in the special Autism Collection recently launched at the Kitchener Public Library. Click here for more details of how to use this collection. As well as new books, the Autism Collection seeks earlier classic titles on autism spectrum disorders that may be out of print. Are there specific titles you would like to see in the collection? Some of us have given our book collections on autism to the KPL. We can appeal to others who may own particular titles that are out of print, to consider giving them to the library collection.

Cash donations, designated for the Autism Collection, may be made to the Kitchener Public Library Foundation or to Waterloo-Wellington Autism Services. Tax-creditable receipts are issued for amount of $25 or more.

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.

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Wise Words on Autism...

"Able autistic individuals can rise to eminent positions and 
perform with such outstanding success 
that one may even conclude that 
only such people are capable of certain achievements ... 
Their unswerving determination and penetrating intellectual powers, 
part of their spontaneous and original mental activity, 
their narrowness and single-mindedness, 
as manifested in their special interests, 
can be immensely valuable
and can lead to outstanding achievements in their chosen areas." 
--Hans Asperger (1944).

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AUTISM IN THE NEWS

Canadian Autism News

ATEDM: Autism mushrooms in Quebec
Recent surveys of epidemiological studies on autism spectrum disorders now indicate that the prevalence stands at a staggering 60-70 per 10 000 people

New Brunswick announces $2.8 million for autism
Most of the money will be spent on a preschool ABA program for children aged two to five.

Struggling with autism
The number of people diagnosed with autism is rising. Services and programs to help them are stretched thin. A story from London, Ontario. 

GoodLife boss donates $750,000
David Patchell-Evans's gift to a University of Western Ontario neuroscience research team set up to search for the causes of autism. 

CIHR funds autism research
A $2.9 million, six-year partnership between the US-based National Alliance for Autism Research (NAAR) and the  Institute of Neurosciences, Mental Health and Addiction (INMHA) of the Canadian Institutes of Health Research (CIHR) aims to train the next generation of researchers and uncover the mysteries of autism - a brain disorder with no known cure. The partnership includes $300,000 from the Fonds de la recherche en santé du Québec (FRSQ). 

Barred--and they don't know why
The Toronto Star story of how special education students are affected by the policy of zero tolerance.
 

General Autism News

Autism, Diet, And Inflammatory Bowel Disease
By Vivian McKelvey for RedFlagsWeekly
Read the full article

Seizures and the Child With Special Needs
Seizures are common amongst people on the autism spectrum. From The Exceptional Parent.
Click for the article

Tourette's syndrome
Characteristics and interventions

Tictionary
A Reference Guide to the World of Tourette Syndrome, Asperger Syndrome, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder for Parents and Professionals.

Vaccines: a hidden danger
A series of investigative reports from Detroit.

Focus: the truth about MMR
Paul Vallely evaluates the claims on both sides - and reveals the new evidence that is yet to come to court.

Debut Of An Odd Couple: Time Magazine
Two brilliant but contrasting young pianists make their Manhattan bows. Each has a story to tell.  Read the article

The Key to Genius
"Autistic savants are born with miswired neurons - and extraordinary gifts. The breakthrough science behind our new understanding of the brain." Another story about Matt Savage from Wired Magazine.

Running man
A good news story from California.

Profile of a good teacher
A story from Florida. 

Asylum knew risks in holding Asperger's patients
More about the 60 people being held in British hospital prisons for the  criminally insane despite a recognition that they have been misdiagnosed as schizophrenic and are now accepted to have Asperger's syndrome.

How doctors turned Julie into a twitching, bloated wreck
A tragic story of misdiagnosis and inappropriate medications for a woman now diagnosed with Asperger's. 
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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS
**  ** means that a new posting--an event being announced here for the first time

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
 

**Saturday, November 29th, 2003, 2:00 p.m. to 4:00 p.m.**
Autism Society Ontario Wellington County Chapter presents
Asperger’s/Autism:  A panel of presentations by four adults with ASD
Guelph Community Health Centre (downstairs in the Conference Room)
176 Wyndham Street North, Guelph, Ontario
No late entry please. 
Registration must be received by Tuesday, November 25, 2003 for this event. 
Please call:  822-0279 and leave your name and numbers of persons attending.
Free Parking in the Baker Street Lot behind the building.
Support workers for children will be available upon request. Childcare will be on
the main floor Children’s Centre. 
Admission is free; donations to ASO-Wellington County appreciated.
 

**Thursday November 27, 2003: 9:30 am to 1 pm 
in lecture hall of Law Society of Upper Canada, Toronto** 
Free workshop offers lawyers insight into disability issues
Helen Henderson of The Star reports on "high hopes for a new plan to raise the profile of disability issues on the radar screens of Ontario lawyers":
There's no shortage of areas to tackle, all of them dramatically affecting the quality of life for people who move,
communicate and/or process information in ways society labels "different." 

What obligations do Ontario schools, businesses and government offices have to meet the needs of people with
disabilities and how can lawyers defend those rights? What can lawyers do for clients whose applications for disability support have been denied even though their doctors say they should be entitled? 

What are the key tax considerations for people with disabilities? And what are the most important issues in choosing a trustee or making a will in favour of someone with a disability? 

Those are the types of issues on the agenda at a free half-day "continuing education" workshop for lawyers tat sponsors hope will be an expanding program. 

If it's a success, they'll move on to tackle broader, big-ticket disability issues in the areas of education, health care and transportation. 

In return for the free session, lawyers attending the workshop will donate some of their time during the following 12
months to help handle legal matters for clients with disabilities. 

"We've had a lot of interest already," says Phyllis Gordon, executive director of ARCH, a legal aid resource centre for
people with disabilities. ARCH is co-sponsoring the project with Pro Bono Law Ontario, a non-profit, province-wide
group that helps people who don't qualify for legal aid but lack the means to hire a lawyer. 

The Law Society of Upper Canada and the Law Foundation of Ontario are providing funding. 

"It's not difficult to get lawyers involved in pro bono work once they know we can help them organize things," says Pro Bono's executive director Lynn Burns. "They don't get a lot of credit but they already do a lot." 

In the area of disability rights, "interest has grown, partly because of the Charter of Rights and the work of organizations like the Ontario Human Rights Commission, but also because there's been an increase in the number of people with disabilities entering the legal profession," adds Josée Bouchard, equity adviser for the Law Society of Upper Canada. 

ARCH itself goes to court only in precedent-setting test cases. But it is available for consultation by lawyers dealing
with disability issues. And it offers the public a telephone advice and referral service. 

"The questions being asked relate to really complex issues," says Gordon, which is one of the reasons the service can't keep up with demand from the public. 

It's currently being reviewed and a redesign is planned but, ultimately, the answer to making the justice system more
accessible lies in encouraging all lawyers across the province to get more involved. 

ARCH and Pro Bono Law Ontario plan to take their free workshop on the road across the province next year. 

If nothing else, demographics suggest that disability issues should be an expanding area of the law. 

With each advancing year, more members of the once-able-bodied population are learning the hard way what it's like to face barriers to participating in things they've always taken for granted. 

The free workshop for lawyers will run from 9:30 a.m. to 1 p.m. Nov. 27 in the lecture hall of the Law Society of Upper
Canada. 

For more information, visit http://www.archlegalclinic.ca or http://www.probononet.on.ca. Lawyers who want to
register for the workshop may contact Theresa Sciberras at 416-482-8255 (voice), 416-482-1254 (TTY) or e-mail
scibert@lao.on.ca. Write: Helen Henderson, Life Section, Toronto Star, One Yonge St., Toronto, Ont. M5E 1E6. Please include your telephone number. hhenderson @thestar.ca

Tuesday, December 2, in London
Regional Support Associates presents workshop:
Dual Diagnosis strategies.Click for details and registration

Friday, December 5, in Owen Sound
Regional Support Associates presents workshop:
Getting comfortable: Sexuality issuesSee more details and register

Safe and Secure Futures Networks, 2003 - 2004
Monthly forums for mutual support and information sharing among family members of individuals who have a developmental disability--in three Toronto locations. Sponsored by Extend-A-Family and funded by a City of Toronto Community Services Grant.   Click for full details

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ANNOUNCEMENTS OF SPECIAL PROJECTS AND RESEARCH 

Book about Mothers of Special Needs Children
Heather Fawcett and Amy Baskin are the co-authors of From Struggle to Strength: How Mothering a Child with Special Needs Transforms Your Life to be published by Woodbine House in 2005. They write: 
"Recently, we invited mothers of children with special needs to contribute to our research.  The response from women across North America to our Mothers and Work questionnaire was overwhelming. We have been unable to respond to everyone individually but would like to thank all of you who completed our questionnaire. Your insights have been very helpful. We are now researching for two new chapters: "Family Life" and "Finding Personal and Professional Support."  If you would like to participate in the research for these chapters, please fill out the questionnaires online at http://www.amybaskin.com
Thank you for sharing your experiences."
Heather Fawcett hfawcett@sympatico.ca  
Amy Baskin abaskin@sentex.net
 

GROWING UP WITH AN AUTISTIC BROTHER OR SISTER
Mary Anne Myers is a Masters student at the University of Guelph in the Sociology department, working under the direction of Dr. Lynn McDonald.  She writes: "As the aunt of a nephew with autism, I have become intrigued not only with the disorder itself, but with the impact a person with autism spectrum disorder (ASD) can have on the family and, in particular, on the other siblings within the family. As so little is known about sibling relationships in autism, I am making this my topic of study for my M.A. thesis.  Further research in this area could offer much in terms of a deeper understanding of social development, sibling interactions and relationships, and the importance of such relationships.
"The focus of my thesis will be on living with a sibling with ASD, and the roles the non-ASD siblings take on as children, as well as the roles they take on as adults both within and outside of the family unit.  I am hoping to conduct tape-recorded interviews with 30 siblings (preferably half female and half male and who are between the ages of 18 and 25) of people with ASD.
"I would like to ask an hour of your time to conduct the interview, which would be held at your home or another place where you feel comfortable in order to discuss your experiences.  If you choose to participate, a summary of the results of the study will be emailed to you, if you so desire, and a copy of the final paper will be on hand at the Autism Society Ontario office in Toronto.
"If you are interested or would just like further information, please feel free to call me at (519) 822-7932 or email me at mmyers01@uoguelph.ca . You may also contact Dr. Lynn McDonald, Project Director at lynnmcd@uoguelph.ca or at (519) 824-4120, x52198. This research project has been approved by the University of Guelph Research Ethics Committee.  (Reference REB AU0012)."

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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
 

Please support THUNDER BAY’S SPECIAL SERVICES AT HOME FAMILY NETWORK PROJECT
OAARSN has written in support of the project led by Nicole Cyrenne, who is a member of our OAARSN network.  Click for our letter and some messages of support from family members of Nicole's network. If you would like to support the continued funding of this project, please fax your letter to Nicole at 807-623-6413. Or you may email her at nicole@tbaytel.net 
 

"Expanding Individualized Funding: The Time is Now!"
February 20 to 22, 2004 at the Inn on the Park in Toronto.
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

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HELPFUL RESOURCES

Ontario Government Ministries
Family Net has posted an article on the new provincial cabinet and particularly the new ministry for children's services. "Premier, new ministers sworn in: New ministry for children’s services"
Click on this link
Click for directory of all MPPS Note that Ted Arnott ( Waterloo-Wellington) is the Critic for Children's Services and Shafiq Qaadri from North Etobicoke is the Parliamentary Assistant for Ministry of Children's Services. 

Nancy Morrison maintains a useful email service related to advocacy for ABA/EIBI for young children with ASD. Over the past couple of years, she has also collected press articles on autism issues. A listing is available in Excel. As she suggests, this information could help in continuing advocacy. Nancy could also photocopy and mail selected articles at cost. To get on her email List or ask about past articles, contact her at nancymorrison@rogers.com
 

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.

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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

Read DJ's Good News Story by a mother in the ASPIRE group in Waterloo-Wellington
It begins: "My son "DJ" still hesitates to tell his story. There is still a lot of pain because he wasn't diagnosed until he was 15 years of age. He was frustrated a lot and could not understand why others did not see how hard he was trying to be a good boy and be accepted...."
 

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