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. 

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. 
 

 

NEWS BULLETIN

  21 September 2004


This week's question
Do adults with Autism Spectrum Disorders die younger than the general population?

One of our adults over 50 is very concerned to know about any research or general wisdom on the average life expectancy of people with ASD. It's possible that our adults would have higher rates of mortality from accidents, suicide, comorbid conditions (seizures, asthma, gastrointestinal disorders etc) and adverse reactions to medication, not to mention abuse. Does anyone know of any published research, or have any thoughts to share on this topic?

A graduate student at the University of Victoria is interested in doing a thesis project on autism and aging.
If anyone can suggest good contacts and sources, please let OAARSN know and we'll pass the word along.


Expression Master: a new resource for learning emotions and facial expressions

Mandeep Arneja, a Computer Science student of Carleton University, has an older brother with ASD. Mandeep has developed a software program to help people with ASD to learn and practice understanding other people's facial expressions as keys to their emotions. Many people with ASD have difficulty understanding others' facial expressions.


The Expression Master program and all necessary software to run it are loaded on a CD.
The Interactive Tutorials, Emotions Library and Quiz Center focus on the six basic emotions of happy, sad, angry, surprised, disgusted and afraid. The print report explains the purposes of the project, surveys current literature and other software in this field, guides the user through the tutorials etc, and discusses ways the programs might be further developed.

Mandeep has asked OAARSN to announce Expression Master. Through us, he invites testing of the program and comments that could help in further development.

We invite requests from interested people who are in positions to test the program with several people and thus to comment. Please say what number of people with ASD you work with and the age-group(s).
We'd like to try it with
a) preschool children?
b) primary-junior school age children
c) teenagers
d) young adults
It could be interesting to try the program on some "neurotypical" people as well.
Please send your request to
OAARSN


"Hot key" for Kitchener Public Library's Autism Collection
Click on this URL to reach a listing in title order of all the books, videos etc in KPL's remarkable Autism Collection. Search KPL Autism Collection
If you are searching for a specific author you'll have to search the entire KPL collection.
This is a Shortcut to Search by Author

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General Autism News


Disruption of protein-folding causes neurodegeneration, mental retardation
Quality-control system in neurons triggers cell suicide when excessive accumulation of GM1 ganglioside in lysosomes disrupts protein folding inside endoplasmic reticulum.

World's Most Powerful MRI For Decoding The Human Brain
The University of Illinois at Chicago unveiled today the world's most powerful magnetic resonance imaging machine for human studies, capable of imaging not just the anatomy but metabolism within the brain.

Features or Creatures: Visual Expertise Taps Same Neural Networks
Is there a special area in the human brain that only processes faces? No, according to Brown University research. When study subjects learned to identify computer-generated figures and then saw both human faces and the figures, scientists found they used the same neural mechanisms. The study appears in the current online early edition of Proceedings of the National Academy of Sciences.

What is Landau-Kleffner Syndrome?
A succinct account, including similarities to autism.

Parents of adult children needing supervision face tough challenges
"The furthest Scottsdale resident Laurie Person could see into the future after her then-5-year-old son Todd was diagnosed with autism was enrolling him in school." A story that could prompt parents of autistic teenagers into sensitive planning.

For the autistic, how to get heard
A news story about Stephen Shore's book:
"Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum."

Launch of innovative supported homes in Aberdeen, Scotland
An innovative new affordable housing development of 14 bungalows provides purpose-built rented accommodation for individuals with higher-level autism and learning difficulties. It's an adaptive housing project for people with autism whose genius, Guy Dewsbury, has a website about Smart Homes and Assistive Technology.

4-H Members Help Make Weighted Blankets For Autistic Children
Four-H members are also teaching others how to make the therapeutic blankets in hopes the program will expand outside Missouri and across the country.

Faces of United Way fundraising campaign launched
A good story from PEI about community inclusion for a 12-year-old girl with autism.

Autism encyclopedia
An online encyclopedia or wiki for autism, asperger's syndrome and all related issues, hosted by AspiesForFreedom.  Specific topics include:    * Asperger's Syndrome   * Autism  * Autistic community  * Autistic history * Benefits Agency * Discrimination * Education * Human rights * Issue of disability * Medication * Mental health * Recognised people * Sexuality * Social services * Social skills * Society's attitude * Welfare payments * Work


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ANNOUNCEMENTS OF EVENTS


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

Only events in the next couple of weeks and new announcements (indicated by ** **) are listed here. For more details or for other previously announced events, opportunities and projects that are still current, please click on this calendar list


Thursday, September 23, 2004, 6:30 – 9:00 pm, in Guelph
Asperger’s Syndrome and Support Strategies
Guest Speaker:  Mark Heinmiller will share insights of living with Asperger’s Syndrome.
Location:  Canadian Mental Health Association, Orchard Park Centre, 5420 Hwy. 6 North, Guelph.

To register, please call 519-763-5812


September 28 and 29, in Windsor
MAKING CITIZENSHIP REAL: GAINING CONFIDENCE FOR THE JOURNEY  a workshop about "living a real life with the rights and responsibilities of citizens, versus fitting into structured programs and schedules designed by others". Facilitated by Judith Snow and Martha Leary and hosted by the Windsor-Essex Family Network & Resource Centre. See full details in flyer: Inside page Outside page


September 30-October 1, 2004, in London

Tools for Excellence--continuing the journey
with Michael Kendrick, Judith Snow, John Lord, and Helen Watson
Sponsored by MCSS and "Are we doing what we say we're doing?"
and organized by Community Living Tillsonburg.
Click for details and registration form



Friday, October 1, 2004, 8am-3pm
** INSIGHT INTO AUTISM SPECTRUM DISORDER (ASD) IN AGING PERSONS **
Targeted audience: Persons aging with autism, family members of persons aging with autism, physicians, nurses, psychologists, psychiatrists, gerontologists, facility administrators, direct support professionals, case managers, social workers, and QMRPs.
Louisiana College
The Granberry Conference Center
Pineville, Louisiana
More information



Saturday, October 23,
9 am - 4:30 pm, in St. Marys Friendship Centre
Home Sweet Home
One day workshop for people with disabilities, families and service providers to hear about unique and different ways people have created a home for themselves. The first step is having a vision. While this is not a workshop about how to secure funding for individual support needs, it will open minds to what is possible in terms of how people can live.  Click for flyer, map and registration form


Monday, November 1, 7-9 pm, in Guelph
**Vision and Strategic Plan for a Farm Community &
Regional Centre for Autism Spectrum Disorder Expertise**
A workshop sponsored by Guleph Services for the Autistic and Waterloo-Wellington Autism Services.
Discussion to be facilitated by Bruce Kappel. All are welcome but please register in advance as space is limited.  Email GSA or leave
message at phone 519-821-7424.
Link to background information about this idea



December 3-4, 2004
, in Windsor
**Autism Awareness Centre Presents**
Jan Casali, Consultant to the Geneva Centre
Introduction to Developing Communication Skills For Verbal and Non-Verbal Individuals with ASD
Susan Aud Sonders, M.Ed, Author of Giggle Time
Giggle Time: Establishing the Social Connection
Hilton Windsor, 277 Riverside Dr. West, Windsor, Ontario

For more information and registration form

Please contact Wendy Benson at toll free 1-866-724-2224 or wendy.casdc@shaw.ca or Vicki Harris at toll free 1-866-488-9497. Fax: (780) 477-8350 or (780)447-5445. Website information at www.autismawarenesscentre.com.

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SPECIAL PROJECTS

Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Friday, April 29, 2005 in Guelph (at Ignatius College). 

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. Our experience with folks who live with Autism Spectrum Disorders makes us aware of very complex challenges. We think these are shared in varying combinations by adults with other exceptionalities. 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.
  • We intend to apply for a Trillium project grant that would help, among other purposes:
    • to enable needy persons and families to attend
    • to record highlights of keynote, workshops and poster presentations, editing them into electronic and video resources to share with people and groups who cannot attend
We welcome the following forms of collaboration with other groups:
1. 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....

2. 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

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

4. Letters of support for our Trillium Foundation application--referring to the good features of the event and process in relation to each organization's focus and sense of need. We would like to receive such letters by September 30, please.

5. If we cannot raise enough funds from Trillium, we welcome ideas of other sources of funds.

We look forward to hearing from you and very much hope that you can take part in some way.

Elizabeth & Gerald Bloomfield Click for planning updates and conference program

(Information at this link will be updated regularly, so please bookmark it).

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AUTISM WEBSITES, BOOKS AND OTHER RESOURCES


Autism Awareness Centre Inc.

"Our vision is to provide Canadian families and professionals with information and education which will affect positive change in the lives of those diagnosed with Autism Spectrum Disorders (ASD). The Centre organizes conferences, partners with community organizations to provide quality workshops, seminars and conferences, and provides resource support at events. Our wide range of books also includes an extensive biomedical list." Phone (403) 640-2710


Treatments and Therapies for Persons with Autism
South Carolina Services Information System
Information on Disabilities and Aging



Asperger syndrome from childhood into adulthood
Abstract of article by Tom Berney
"Asperger syndrome, a form of autism with normal ability and normal syntactical speech, is associated with a variety of comorbid psychiatric disorders. The disorder is well known to child psychiatry, and we are beginning to recognise the extent of its impact in adulthood. The article reviews the diagnosis and assessment of Asperger syndrome and its links with a wide range of psychiatric issues, including mental disorder, offending and mental capacity. It also describes the broader, non-psychiatric management of Asperger syndrome itself, which includes social and occupational support and education, before touching on the implications the disorder has for our services."


A THORN IN MY POCKET
Temple Grandin's Mother Tells the Family Story 

"Eustacia Cutler has written the story of raising the non-verbal, often-violent child that Temple Grandin was 50 years ago A Thorn in My Pocket captures the years it took to nurture her through tantrums, to protect her from the 50's label of "infant schizophrenia" brought on by what was then-believed “frigid mothering,” and to keep her from being warehoused in an institution for the retarded. 
"Had Eustacia not won her visceral and intellectual battle with the social and medical community as it was then, Temple Grandin would not be today a Ph.D., an Associate Professor, and, inarguably, the most famous autistic person in the world. The world would have been robbed of a beacon of hope to all afflicted with the disorder.  
"A Thorn in My Pocket enthralls the reader with the author's death-lock struggle with her own identity, with the protean mysteries of Temple's autism, and with her husband's belief that his daughter should be institutionalized. A story of angst and guilt, myth and reality, family and society, Eustacia weaves a literary masterpiece as broad as all humanity." Future Horizons....
Pre-publication Special!! Call  1-800-489-0727  or  1-817-277-0727 to receive this new publication for only $19.95!  (normally, $24.95) with free shipping anywhere in the U.S.! You may also order online at the regular price of $24.95 with $5.00 shipping

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES AND VIEWPOINTS

Alex Bain of Prince Edward Island is 16. You can read about him at http://www.PlanetAutism.com/alex.htm .
Alex loves to run and most of Saturday or Sunday mornings since May have been spent at roadraces, mostly 5 & 10K, across Prince Edward Island. This past weekend he ran his first Half Marathon (13.1 miles, 21.0975K) in  1 hour 44 minutes 49 seconds, placing 13th. He was the youngest runner (and as usual, the only autistic one). You can see pictures from his races and read his stats at http://www.PlanetAutism.com/run.htm
On October 3rd, 2004, Alex will be running in the 5K "Run for the Cure". The Canadian Breast Cancer Foundation CIBC Run for the Cure is the largest single day fundraiser in Canada to support the advancement of breast cancer research, education, diagnosis and treatment. The 5K or 1K walk/run takes place in communities across the country.  http://www.cibcrunforthecure.com/default.asp?view_flash=view_english
Alex's best 5K time is 19 : 43  (6 : 21min/mile, 3 : 57min/Km) and he hopes to better that in The Run For The Cure. If you would like to support breast cancer research, education, diagnosis and treatment in Canada and/or show Alex your support, (and have a credit card -  payments can be made using VISA, MasterCard, and American Express) here's how: Go to: https://www.cibcrunforthecure.com/rftc2004/html/participant_search.asp
In the "Last Name" search box put "Bain" In the list it gives you, click on "Bain,Alex  PEI, PE" and you'll end up on his page. It's quite straightforward from there.
Alex runs "for autism", not against it. He runs for acceptance and gets it. Alex is quite ok with being autistic, as are his friends and family and fellow runners.


Facing My Asperger's
By A.J. Mahari
" I was told that I had Asperger's Syndrome almost four years ago now. I took a respite holiday commonly known as denial from this reality for most of that time, until last week....."


No Autistics Allowed One Year Later

Autism Society Canada Builds a Ghetto
by Michelle Dawson
Excerpt: "We disagree that all positive views of autism must be attacked, for example on the grounds that "good" autistics are so rare as to be irrelevant."

Full text at: http://www.sentex.net/~nexus23/naa_one.html



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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