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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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

  1 August 2004

Thought for the week

"My passionate sense of social justice and social responsibility has always contrasted oddly
with my pronounced lack of need for direct contact with other human beings and human communities.
I am truly a 'lone traveler' and have never belonged to my country, my home, my friends, or
even my immediate family, with my whole heart;
in the face of all these ties, I have never lost a sense of distance and a need for solitude..."
   

-Albert Einstein who like
Isaac Newton is thought by some autism experts to have had the key symptoms of Asperger syndrome.

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General Autism News

Scientists Discover Biological Basis for Autism
A team at Carnegie Mellon University and the University of Pittsburgh announces a groundbreaking discovery about the biological basis for autism, the mysterious brain disorder that impairs verbal and non-verbal communications and social interactions. Using functional magnetic resonance imaging (fMRI) scans, the researchers have found numerous abnormalities in the activity of brains of people with normal IQs who have autism. The new findings indicate a deficiency in the coordination among brain areas. The results converge with previous findings of white matter abnormalities in autism. The new findings led the researchers to propose a new theory of the basis of autism, called underconnectivity theory, which holds that autism is a system-wide brain disorder that limits the coordination and integration among brain areas. This theory helps explain a paradox of autism: Some people with autism have normal or even superior skills in some areas, while many other types of thinking are disordered. The team's study will be published in the August edition of the British journal Brain and is available online at www.brain.oupjournals.org

Framework for systematically incorporating epigenetic information into traditional genetic studies
"Much as the genetic sequence is passed from parent to child, epigenetic "marks" that sit on our genes are also inherited. These "marks," usually small methyl groups, are attached to genes' backbones and convey information, such as identifying which parent the gene came from. The marks also normally turn genes on or off...." Researchers at the new, multi-institutional Center for the Epigenetics of Common Human Disease (with a $5 million, five-year grant from the National Human Genome Research Institute and the National Institute of Mental Health) will develop the tools they need and then begin systematically examining the epigenetics of autism and bipolar disorder.

Autism: Do environmental factors play a role in causation?
A well-documented review of current knowledge written for the
Science and Environmental Health Network.

Key to earlier detection of Asperger’s syndrome
Home videos of infants' movements can be used to help detect a form of autism in a child’s first year of life, years earlier than the disorder typically is identified.

New technology helps people with ADHD
"Play Attention", built on technology originally used by NASA and the U.S. Air Force, involves asking users to move images on a computer screen using only their minds. Sensors in a red bike helmet tap into brain waves and send information to a computer that in turn controls the outcome of scenarios on the computer screen. As the brain waves change, the outcome on the computer screen changes.

Autism rate in Canada Skyrockets – Equal to US rate
A press release from
Autism Canada Foundation claims that a child born in Canada today has a 1 in 195 chance of being diagnosed with Autistic Spectrum Disorder, based on data from public schools in a suburban Southern Ontario region, for children born between 1990 and 1999.

Meeting the health needs of the developmentally disabled
An article from Tennessee that quotes a 2000 Special Olympics report, "The Health Status and Needs of Individuals with Mental Retardation," for the estimate that people who have mental retardation or developmental disabilities have a preventable mortality rate that is four times the general population's. "A significant part of this disparity could be due less to mental function than health care not received. This situation translates not just to a shortened life but to a large amount of human suffering."  "Ways to do better" are quoted from "Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation," Report of the Surgeon General's Conference on Health Disparities and Mental Retardation (February 2002):
  • Devise health promotion programs regarding anti-smoking or weight loss messages that include this population.
  • Develop a national research agenda to identify knowledge gaps.
  • Encourage health care professionals to care for individuals based on age and health needs, not just on disabilities.
  • Integrate training related to caring for this population into medical education.
  • Develop financing arrangements that lead to better care outcomes.
  • Make access to health care less complicated.
  • Ensure continuity of services.
How good is primary health care for adults with autism in Canada?

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AUTISM BOOKS AND OTHER RESOURCES

The Dr Tony Attwood Managing Feelings Conference
A 2.5 hour multi-media lecture by Dr. Tony Attwood called "Managing Feelings". Very limited-time amazing price of only $29.97 ( Value $200-500*). Available Until August 30th! For parents, siblings and educators of children / adolescents with Asperger's and High Functioning Autism. It features a user-friendly PowerPoint presentation that anyone can easily learn to use.

Future Horizons August Online Newsletter

Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism
by Mary Wrobel (Future Horizons)
$24.95
Mary Wrobel offers an unique combination of social stories and easy-to-understand activities which reduce the fear and/or confusion surrounding subjects such as brushing teeth, using toilet paper, eating fruits and vegetables, the need to go to the doctor/dentist, when it’s proper/not proper for people to touch you, being naked, and personal hygiene in private areas, shaving, periods, among numerous other important subjects.Click for more

Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum
Editor:
Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. Foreword by: Temple Grandin Contributing Authors: Kassiane Sibley, Stephen M. Shore, Roger N. Meyer, Phil Schwarz, Liane Holliday Willey. $21.95
Ask and Tell is unique in being the first book to help people with autism to self-advocate in their pursuit of independent, productive, and fulfilling lives and in consisting
exclusively of contributions by those on the autism spectrum for persons on the spectrum. Click for more information

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SPECIAL PROJECT

Tess Van Deynse of Belgium writes:

"I am a normally gifted person with autism. The Belgische Stichting Roeping (Belgian institution helping people realizing their callings in life) are giving me a stipend through which I can pursue my dream of writing a book about the life circumstances regarding people dealing with autism all over the world. Basically I’m looking for stories of autistic persons concerning their everyday life: at home, at school, etc. For those who are interested, here are some guidelines." Click for Guidelines 


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ISSUES AND ADVOCACY

Ontario Education Minister Gerard Kennedy has announced $100 million in new special education funding, along with measures to ensure the investment will help create good outcomes for special education students.
English -- http://ogov.newswire.ca/ontario/GPOE/2004/07/28/c6648.html?lmatch=&lang=_e.html
Français -- http://ogov.newswire.ca/ontario/GPOF/2004/07/28/c6663.html?lmatch=&lang=_f.html
Please note that a document about Autism Society Ontario's position on ISA and other education human rights issues is on the ASO website www.autismsociety.on.ca Scroll down on the main page and you'll see at the bottom: "Read Autism Society Ontario's submission to the Human Rights Commission on Education and Disabilities".


NEWS of MCSS Consultations – Immediate Action Required!
The Ministry of Community and Social Services is initiating a steering committee to advise the Minister on how to proceed with her "transformation" of Developmental Services in Ontario. This very important process will profoundly affect developmental services for many years to come. A Steering Committee is being formed. They will begin meeting in early August 2004 and create a "high level paper" by early September. This paper will be the basis for broad public consultations to be completed by Feb/March 2005. There is not much time. This committee and paper will also define the all-important terms of reference for the broader provincial consultations.

Unfortunately the Steering Group is composed almost entirely of service providers. However families and self-advocates are requesting equal representation at the table...we hope you will join us in ensuring that families and people with disabilities are fairly represented in this process. To date only three representatives from Family Alliance Ontario (3) and People First (1) have been invited to serve on this committee. In contrast nine staff representatives from local and provincial service agencies have been invited to participate. 

If the goal is Transformation of the current system, why is the committee stacked with the status quo & only token inclusion of families and people with disabilities!

Apparently Family Alliance Ontario accepted to participate but requested that families and self-advocates be given the same number of seats as service providers, in recognition of the reality that service providers and consumers are distinct stakeholders with different points of view. Most of the service provider representatives are opposing any additional consumer representation – this is outrageous.

Fortunately the final decision on the composition of the steering committee will be the Ministry's. Let the Ministry and your elected representatives know how you feel about this. If you or your group feels that families and people receiving supports/services should have an equal voice and equal representation at these consultations, then you need to communicate your opinion and recommendations IMMEDIATELY to Deputy Minister Kevin Costante.

For further information about the consultation process, contact Deputy Minister Kevin Costante, or Assistant Deputy Minister Andrea Maurice.

Kevin Costante, Deputy Minister  
Ministry of Community and Social Services
Hepburn Block
6th Floor
80 Grosvenor St
Toronto ON M7A 1E9
General Inquiry: 416-325-5225
Fax: 416-325-5240

Andrea Maurice, Assistant Deputy Minister, 416-325-3592

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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 
 Please Do Not Send Files Or Brochure Attachments



Sunday, August 22, 2004

Cambridge Chapter of Autism Society Ontario announces
its first annual golf tournament in support of individuals with autism and their families.
This dedicated group of volunteers supplies information, provides parent support, and advocates for programs and services to benefit the local autism community.

Grand Valley Golf & Country Club, 1910 Roseville Rd, RR#2, Cambridge ON N1R 5S3, (519) 623-8811
Shotgun start at 7:30 am, registration begins at 7am. Best ball format.

Fee of $75 per person includes 18 holes of golf, a power cart, buffet luncheon and a $20 charitable tax receipt.
Please make cheque payable to “Autism Society Ontario –
Cambridge Chapter” and mail to 160 Hespeler Road,
Cambridge, ON N1R 6V7 no later than Friday July 30, 2004.  We are limited to 144 golfers so please register early.

For more information: Barry at (519) 621-5501 all5ames@globalserve.net



Sept 13  2004
, in Barrie
Shirley Sutton presents on
Visual-Kinesthetic Printing  Skills: Preparing for Kindergarten and Primary level

Contact : Achimota Centre for Children with Autism (ACCA) Barrie 705-735-2336. achimota@vianet.on.ca

 


Friday, 01 October, 2004, 9:00 a.m.-4:30 p.m., in Woodbridge
 

PRESENTATION BY DR. SIMON BARON-COHEN
Click for full information



*Oct 1/ 2, 2004, in Ottawa
Shirley Sutton presents on
Sensory Strategies,  Oral and Fine Motor Fun Make & Take.

Contact: Children at Risk Ottawa On  carsup@magma.ca



October 15 and 16, 2004, in Toronto
Communication Disorders and the Whole Child 
SPEECH FOUNDATION FALL SYMPOSIUM
See more information



Oct 17-18, in Hamilton
Canadian National Committee for Police/Mental Health Liaison

3rd Annual Psychiatrists in Blue conference. Click for details


Oct. 22, in
Victoria BC.

Shirley Sutton presents on
Making Sense of Sensory Integration

Contact: Autism Awareness Centre Inc. wendy.casdc@shaw.ca



October 22, 2004
- in Toronto (Victoria College): 10am -12:30
Building Blocks for Gluten Free Living - workshop for professionals
S
helley Case RD, one of the leading experts in celiac disease, will present to professionals on Celiac Disease and the Gluten-free diet. Sponsored by Kingsmill Foods. Please click here for workshop brochure

October 23, 2004 - in Toronto (Victoria College): 9am to 4pm
Building Blocks for Gluten Free Living - our first customer workshop, sponsored by Kingsmill Foods. We’ll have guest speakers, a book signing and gluten-free samples galore. It’s a must-attend for all people with gluten-free needs. Shelley Case, dietitian and author will be our keynote speaker followed by an esteemed panel of professionals who will address our customers most burning questions. SFS will have a "burning question" drive in which customers can e-mail us at sfs@sickkids.ca the questions they want answers to. Our panel of professionals--Dr. Peter Durie MD FRCPC, Shelley Case RD, Mary Barron MSc RD and Heather Butt PHEc--will present the Top 10 Questions posed by our celiac customers. All registrants will get an information package, refreshments and lunch (made by Il Fornello) on the day of the event.  Please click here for workshop brochure.
Registration is set up for all these events on "Shop On-line".  Space is limited for all our workshops, so plan to register early to secure your spot. This information is also available on www.SpecialtyFoodShop.com, on Shop On-line, then Workshops



Nov. 6, 2004
, in York Region

Shirley Sutton presents on
Sensory Oral and Fine Motor Fun Make’n Take

Contact:  Autism Society Ontario- York Region. Lynda asoyork@axxent.ca


Geneva Centre International Symposium
is scheduled for November 10, 11, 12, 2004 at the Metro Toronto Convention Centre.

The Symposium 2004 brochure has been mailed out and is also available on our website.
This year you have the option to register on-line at www.autism.net

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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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