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
14 December 2003

Seeing Each Other’s Point of View: 
Working Together For and With 
Everyone Who Lives with Autism

People who live with autism can seem much more different than alike. If 20 people with autism were to be gathered in one room, the differences among them would seem much more striking than the similarities. This used to be said years ago, when the definition of autism was narrower and more specific. Now that we have a much broader concept of autism spectrum disorders, with a prevalence of nearly one per cent of the population, the range of personalities, abilities and needs is far greater. Persons with a diagnosis at the high end of the autism spectrum may seem hard to distinguish from those who are “neurotypical” or non-autistic.

People involved in the autism cause--as persons with autism, parents and caregivers, or support workers, researchers and administrators—sometimes seem to be at odds with one another. Some may be concerned only with their particular need or a specific treatment or therapy, and seem intolerant of all others. Parents of young children may describe autism as a monstrous affliction that has to be defeated, while high-functioning adults with autism want to celebrate the autistic traits that are part of their identity. When resources seem scarce, funding for preschool children may mean that teenagers and adults have to go short. Supports and services may be reserved only for the most high-functioning (as they have the best potential for independence) or for the least able (as they need help most). Parents and caregivers may be over-protective or under-estimate the abilities and dreams of persons with autism. Administrators and researchers may not consult with persons who have autism, so that research and service priorities may not meet their real needs.

Yet people with autism spectrum disorders share some very important differences from other people, especially in social communication, even if their degree of impairment can range from slight to profound. With their families and supporters, they have usually had to cope with misunderstanding and delays in recognition of their special needs. These insights and experiences should help us all to understand and support each other better. Let’s do it better in 2004!

Season’s greetings and best wishes to all 
from the OAARSN team and from board members 
of Guelph Services for the Autistic 
and Waterloo-Wellington Autism Services.

A propos the festive season, persons with ASD are often made aware of their differences most acutely at these times. Their sensory differences, food intolerances, difficulties with interpreting social cues, and sense of being short of friends may all be factors. 

For some tips for relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with autism, click on Dear Family and Friends.

But music can calm and satisfy many at stressful times. We commend this good idea:
ASO Wellington Chapter offers CDs
1. Variante Harp & Flute Duo: A collection of classics that represents a range of of music genres put to Harp and Flute. 
2. Cantiques de Noel: An eclectic collection including popular Christmas songs and Variante's personal harp and flute arrangements of traditional Christmas melodies.  Silent Night, O Holy Night, 'Twas in the Moon of Wintertime, and many others, will warm your hearts and hearths during the festive season.
Click for details and order now from Nancy Miles in Waterloo!

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NEW CONTENT ON OAARSN'S WEBSITE

Adult Autism Issues in Waterloo-Wellington 22, December 2003 is now posted in our
Documentation area. Click to read AAIWW newsletter

“Striking the Balance – Rights, Risks and Responsibilities”
Kerry’s Place Autism Services offered a workshop on this subject before its Annual General Meeting on 22 November 2003. Click for report by Gerald Bloomfield

Annual report of Guelph Services for the Autistic.

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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AUTISM IN THE NEWS

Canadian Autism News

Grits grilled on courtroom fight about autism funding
Ontario families with autistic children are fighting the governmetn's policy in a lawsuit and in human-rights complaints, claiming ending the therapy at age six is discriminatory and runs contrary to medicare principles. 

Assistance dogs help autistic children emotionally, says U of G prof
"Through detailed surveys, video footage analysis and interviews, population medicine professor Cindy Adams is exploring the science behind the unique human-animal bond that develops between autistic children and their canine companions." The research is associated with the work of National Service Dogs, based in Cambridge, southern Ontario.
NSD provides dog for 6-year-old in Lacombe, Alberta

Autistic children being taught to recognize facial expressions
A computer program devised by a professor at the University of Victoria. 

Two more stories about the McCreary Family of Orangeville (from Family Net)
Megan invites others to 'Meet my Brother'
Pencil case stocked with sensory gadgets for children with autism
 

General Autism News

"The Autism Fight"
Parents of autistic children rarely forget the details of the day they are first given the child's diagnosis," Susan Sheehan writes in the December 1, 2003, issue of The New Yorker. In the case of Dan and Regina Wagner, whose son Daniel was diagnosed with autism six years ago, a few months before his second birthday, the diagnosis also set in motion a terrible struggle between his parents, program administrators, and school district officials in Maryland's Montgomery County.

Center for Precious Minds
The Relationship Development Intervention (RDI) program aims to help autistic children develop social skills. It is based upon the model of Experience Sharing developed by Steven Gutstein.

Woman lives productively with autism 
An inspiring story about Nancy Henn of Akron, Ohio, who has severe autism but makes a union wage, carries medical insurance, pays taxes, and pays for her job coach with her earnings.

Autistic students step up to challenge
A good story from Florida about two 18-year-olds who are "are able to do the job, but they don't know how to fix little problems...."

Musicians defying disabilities
"Some people, long misunderstood by society, are finding their voice," writes Carolyn Webb. Until recently, many people assumed that the disabled were inert. That they had to be protected
and spoken for. They didn't have anything interesting to contribute. They didn't have creative needs." A great story from Australia that explodes this myth.

Outstanding and Touching Series on Family With Autism
Beginning in January, Cleveland Plain Dealer reporter Harlan Spector conducted more than 85 interviews and spent dozens of hours observing the Augier children for this series.
Autism turns sons into strangers
A tough, costly approach they hope helps the boys 
Family effort is never-ending
Epilogue
Bring them back alive: Plain Dealer Editorial
Autism series touched hearts: letters to the editor
Epilogue II: neighbors respond with gifts to family of autistic boys 

Twenty-five adopted boys find a home in one house
Story of the Silcock family of California, 41, who have adopted 25 boys — boys who have been abandoned, abused, rejected and usually labeled unadoptable. Some have autism.

British Warning on Antidepressant Use for Youth
British drug regulators yesterday recommended against the use of all but one of a new generation of antidepressants, known as S.S.R.I.'s, in the treatment of depressed children under 18. Their effectiveness in treating depression in children, they said, has not been sufficiently demonstrated, and some drugs have been linked with suicidal thoughts and self-harm in children and adolescents. The one exception was Prozac. A summary of the findings was published on the Web site of the British Medicines and Healthcare Products Regulatory Agency at www.mhra.gov.uk
 

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ANNOUNCEMENTS OF EVENTS
**  ** means that a new posting--an event being announced here for the first time

**Typing to Talk**
Some Ontario adults with ASD, who use facilitated communicating to express themselves and be listened to, plan to meet in Guelph on Sunday January 4. If you are interested, please phone Beth at (416) 895-5112 in Toronto or Elizabeth at (519) 823-9232 in Guelph. 
 

Saturday, January 10, 2004, 9-12 noon, in Kitchener
**NLD Parent Networking-Support Group of K-W presents Parent Advocacy Workshop**
Lindsay Moir retired from the Ministry of Education in 1997 and now focuses on assisting agencies, associations and parents in obtaining appropriate special education services for exceptional students. His workshops are informative, up-to-date and on-target for addressing the needs of exceptional students.
72 Victoria St. S. Suite 201, Kitchener, Ontario. $15.00 / person
For more information, or to receive a registration form, contact Cheryl at  ccpidgeon@sympatico.ca
 

**Telehealth Course on Assistive Technology**
Five weekly sessions from January 16 to February 13, 2004
Click to learn more and to register

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

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ANNOUNCEMENTS OF SPECIAL PROJECTS 

Parental Perspectives on Autism: Research Project
Leanne Mercer is currently finishing the last year of her Masters at the University of British Columbia. She writes: "For my thesis I am looking at parental perspectives on Autism. I have been involved in Autism research for a number of years and being part of the parent advisory group in Ontario I found that parents have invaluable insights on contributing factors of Autism; insights that health care professionals may not have regarded in the past. I have developed a questionnaire to document ideas parents may have regarding contributing factors to Autism in order that research can be explored in directions that have not been considered before. My questionnaire takes about half an hour to complete. This is the URL link to the web-based version of my questionnaire, as well as the paper version in Word. I would greatly appreciate it if you could pass it on to interested parents." Click on link
Principal Investigator: Ms. Leanne Mercer (M.Sc. Candidate) and Dr. Suzanne Lewis 
Co-investigator: Dr. Jeanette Holden and Ms. Susan Creighton 
Institution: University of British Columbia, Vancouver, BC and Queen's University, Kingston, ON
Leanne Mercer, B.Sc., Department Of Medical Genetics; Children's & Women's Health Centre of B.C.; 4500 Oak Street, Room B208; Vancouver, BC Canada; V6H 3N1 
Fax: 604-875-2376 Phone: 604-875-3024

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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
 

"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
 
 

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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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