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

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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.

Please note that this service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. Nor do we necessarily agree with opinions that may be expressed.

 


NEWS BULLETIN

12 December 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.


GENERAL AUTISM NEWS

Autism 'causes greatest disability'
The condition most likely to be associated with severe disability was autism, the Australian Institute of Health and Welfare (AIHW) report found, followed by dementia, Down syndrome and cerebral palsy. In these conditions associated with intellectual, learning, psychiatric and neurological disorders, over 90 per cent of people reported  having severe disability."

Autism: Why Do Some Develop Then Regress?
Most children with autism show developmental differences early in life, usually involving their ability to communicate. But new University of Michigan research examines the 20 to 40 percent of youngsters who appear to develop communication skills, then regress. The largest known study of its kind offers a host of new details on autism with regression, including a link between regression and a family history of autoimmune thyroid disease, an association with gastrointestinal symptoms and more findings offering a better picture of autism's causes.

Brain Researchers To Develop New Class Of Drugs To Repair Psychiatric Disorders
“Smart” drugs capable of targeting specific brain cells to control psychiatric disorders such as autism and schizophrenia may be ready for early clinical trials within three years, with the launch of a $1.5 million project to take place at the Brain Research Centre (BRC), a partnership of the University of British Columbia and Vancouver Coastal Health Research Institute (VCHRI). The new generation of “smart” drugs will target only the cells where communication balance is impaired, leaving healthy areas of the brain unaffected.

Children's Hospital Boston launches major genetic study of autism
An ambitious new multidisciplinary study of autism will attempt to pin down its genetic and biochemical causes. Results could be available in a year or two, and could yield a greater biological understanding of autistic spectrum disorders, better diagnostic and prognostic techniques, and potential medical treatments. The Children's researchers plan to enroll 100 to 150 children age 2 years and older per year, along with their parents and affected siblings. They also will enroll 150 unaffected children to serve as controls.

GPs warned against "happy pills"
Serious concerns about the overprescription of antidepressants such as Seroxat and Prozac will be spelled out by the two bodies regulating the safety and use of medicines in Britain. This follows months reviewing the international data on the drugs, known as SSRIs (selective serotonin reuptake inhibitors).

How the carers hijacked an autistic man called Andrew
A Sunday Times commentary on the painful story of a man whose
devoted family constantly stood up for his needs and rights, but were at almost every turn ignored or sidelined by the very people who have a statutory duty to support him and to take his family’s views into account. One excellent local council officer stood up to her colleagues. This English family's case, now upheld by the ombudsman, will resonate with the families of some autistic adults in Canada.

Developmentally disabled live alongside others on Wisconsin farm
The three dozen people who live in six houses here are more than neighbors. They are an "intentional community" that finds freedom in being needed, luxury in austerity and value in everyone. Members of Community Homestead in the rolling bluffs along the St. Croix River pool their money and make decisions by consensus.

For Siblings of the Autistic, a Burdened Youth
"Siblings of children with any disability carry the burden of extra responsibility and worry for the future, though they are also enriched by early lessons in compassion and familial love. But autism, a brain disorder that affects communication and social interaction, is in a class by itself in the heavy toll it takes on siblings, according to educators, therapists and a dozen scientific studies.
"With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance. Also, autistic children can be indifferent to loving overtures, which is painful to siblings, some of whom must literally show a brother or sister how to hug. Finally, some autistic children have raging tantrums, destroy the belongings of others and behave in peculiar ways, which can be frightening or embarrassing to siblings and create an environment of unpredictability similar to that in families with an alcoholic member."
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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

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
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments

.....advance announcements....events in 2005...

Saturday, January 29th, 2005, 2:00-5:00pm, in Ottawa

ASO Ottawa presents...
Finding Work for People with High Functioning Autism,
Asperger's and Non-Verbal Learning Disorders

Finding a job for someone with ASD is probably easier than finding a job for you! Discover how to find jobs for adults & youth with Autism Spectrum Disorders in the hidden job market. Find out how ASD can actually open employer's doors. Learn tested methods of job development and practice tricks of the trade, taught by Gail Hawkins, owner of Mission Possible, a job coaching firm specializing in ASDs and based in Toronto. The workshop is suitable for adolescents and adults with HFA, Asperger's and NVLD, their parents, educators, support workers and other professionals. Preregistration required. For more information, click here or email Anita at anita_acheson@hotmail.com or Heather at hfawcett@sympatico.ca, or call Anita at 829-4723. 


April 6-8, 2005, in Barrie
OADD 2005 Conference


The 16th annual conference on developmental disabilities will be held April 6-8, 2005 at the Kempenfelt Centre in Barrie, Ontario. Visit our conference section for information on submitting proposals for your workshop/seminar sessions and posters.

 
April 8-10, 2005, in Cornwall

Symposium on Raising an Adolescent/
Young Adult with an Autism Spectrum Disorder
Hosted by Autism Society Ontario's Upper Canada Chapter
Click for program
Sample of presentations:
-Secondary School Transitions for Students with Asperger’s Syndrome (Richard Hales)
-Planning for Transition to Employment, Community & Post Secondary Education (Lindsay Moir)
-Panel Discussion On Educational Issues - Please come prepared to ask YOUR questions
-ASD Students in High School - Visual Supports for Meaningful Learning  (Sheila Bell)
-Sexuality and People with Developmental Disabilities (David Hingsburger)
Registration must be received ON or BEFORE MARCH 25, 2005.
Early Bird Registration before January 21.
For brochure with all the details about the seminars, accomodations, costs and directions.
contact the Upper Canada Chapter for a brochure dkeillar@sympatico.ca


Friday, April 29, 2005 in Guelph
Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Guelph Services for the Autistic and OAARSN are taking the lead in convening a gathering of Ontario people who want and need to be creative in supporting good lives with and for adults who are vulnerable because of disability. We particularly want to encourage self-advocates, families and friends to take part.
  • Our concern is practical--how to plan and implement the elements of a good life for each person and that we can learn from each other's effective strategies and success stories.
  • Our approach is comprehensive and holistic. We hope to put our minds and imaginations around various strategies, to show the connections among them, and to help persons and families think about and choose combinations that may work for them.
  • We plan a process of collaboration in discussion and sharing resources--during the conference and also beforehand and afterwards, using the OAARSN website and other media. Highlights of keynote, workshops and poster presentations will be recorded and edited into electronic and video resources to share with people and groups who cannot attend.  Click for planning updates and conference program
We welcome the following forms of collaboration with other groups:
a) Ideas of good strategies and models that should be included and represented and of needs that could be addressed by this conference. Questions and comments....

b) Display materials illustrating creative strategies and success stories developed by your group or known to you, for the poster presentations and shorter sessions in the afternoon.
These are some examples we know ourselves, but we want to include more:
-ways of "deep listening" to vulnerable persons who do not speak
-helping self-advocates to direct their own supports
-creating and maintaining circles of support to supplement and succeed living parents
-circles of support for vulnerable persons who have no family
-creative options to have a home of one's own
-independence technologies
-recruiting volunteers to be informal friends
-ways to screen, train and appreciate excellent volunteers
-bridging gaps between adults with special needs and their neighbourhoods and communities
-supporting adults who want to continue learning, formally and informally
-enabling people to develop micro-enterprises
-lifesharing communities in households or larger units
-planning good lives now, to be effective through future transitions when parents can no longer support vulnerable adults

-how brokerage works
-what aroha/microboards can do

c) Someone to be the liaison person for your organization or support group, who will pass on news and updates to your members.

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BOOKS, MEDIA, RESOURCES AND PROJECTS

Autism is a World
For 26 years, Sue Rubin has been on an extraordinary journey. Her unusual behavior led to a diagnosis of autism when she was four. She was believed to be retarded until age 13. But then a new communication technique gave Sue the ability to connect with the world. Now, she is a junior in college with a top IQ, a tireless disabled-rights activist, and an articulate guide into a complex disorder.
Written by Sue Rubin, narrated by Julianna Margulies, produced and directed by Oscar-winning filmmaker Gerardine Wurzburg, Autism Is A World is a rare and compelling journey into Sue's mind, her daily world, and her struggle with autism.
Sue says she is her own worst nightmare. When you meet Sue, she does not make eye contact. She does not offer to shake your hand. She may fixate on the buttons of your shirt, but cannot say your name. For Sue Rubin and thousands of others, autism is a complicated disorder that causes strange and uncontrollable behaviors. In Autism is a World, Sue takes the audience inside autism to explain what she feels and does. How she relates to others. Why she clutches spoons or finds comfort in falling water. How she navigates college and copes with the tasks of daily living.
In this insightful short film, Sue guides the audience through all that is special, and usual, about her life. From the racetrack, where she goes to unwind, to the classroom, where her intellect shines, from a presentation at an autism conference to the challenges of paying bills or cleaning house or shopping, Sue takes an unflinching look at the world of autism.
Autism is a World combines Sue's courageous writing with a sensitive, dramatic reading by Margulies. Brought to life through Wurzburg's experienced and powerful filmmaking, Autism is a World offers a view of autism as it has rarely been seen--from the inside out.
TRT 39:40
Producer & Director: Gerardine Wurzburg
Co-producer: Douglas Biklen
Associate Producer: Elissa Ewalt
Copyright 2004 State of the Art, Inc.
For more information, contact:
Elissa Ewalt, State of the Art, Inc.
Tel: 202-537-0818 ext 13 Fax: 202-537-0828
Email: eewalt@stateart.com
Website www.stateart.com


University of Victoria (BC) considers new degree course in autism
The Faculty of Education at the University of Victoria is considering offering a Master of Education in Leadership Studies (with an emphasis on autism) in July 2005 (subject to enrollment). In addition to raising students’ awareness of certain aspects of autism, this programme will enable them to become transformational leaders, scholar/practitioners and researchers. Children with autism require advocates, whether they are parents, principals, teachers, care workers or government officials, who will enable them to develop fully their unique potentialities. Furthermore, these enlightened individuals will provide the necessary advice, direction, support and understanding needed for children with autism to enjoy school, to learn how to learn, and to participate in all school activities and events. 


FREE RESEARCH RESOURCE:
Autism Research Institute recently uploaded on the Internet all 68 back issues, 1987 through 2003, of our widely acclaimed Autism Research Review International newsletter. The new website also contains a comprehensive index, from “ABA” to “Zyprexa.” You simply click on a topic in the index, and the article appears immediately. You will need Adobe Acrobat Reader on your computer to view the articles: www.ARINewsletter.com

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

See Weaknesses in Care of Adults with Autism
in our OAARSN bulletin for 4 December


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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.

O-n-e ...in autism

“We” is plural;
“I” is one;
But one is not defined
Even by science or faith.
Can cognition accept one,
If it is not defined?
And with one not defined,
How is two or five defined?
The multiple cannot be
If the singular has not been,
And the singular--one--is what I am,
With all the multiples around me...
What are these multiples?
Are they extensions of me?
Are they defined by my cognition of them?
Or are they totally devoid of me,
And how do I cognize their being?
That not only applies to people,
But to all that exist beyond my being,
Whether a leaf or a train or a musical note...
Once one is defined, then the process is there
For the multiples to be re-cognized,
And the faces known,
And the names remembered;
But without the one, there is nothing,
Not even the need or desire to speak,
As nothing is beyond the wall of separation
That keeps the one apart from the plural.
 
                          -Brian Henson©2004

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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