ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN


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OAARSN NEWS BULLETIN

 
20 November 2006


CALL FOR HELP

Seeking Neurologists Sensitive to Autism and Epilepsy
Families and caregivers of several adults who live with autism and occasional grand mal seizures are looking for neurologists willing to see adults with autism and, if at all possible, to consider strategies other than medication. Some adults react badly to drugs and some are highly sensitive to medical procedures. Please let us OAARSN know of anyone you could recommend.

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ONTARIO NEWS

Important New Releases from the Individualized Funding Coalition for Ontario
IFCO is pressing purposefully to persuade the Ontario Government to move ahead in implementing
the new directions announced in Opportunities and Action – Transforming Supports In Ontario for People who have a Developmental Disability  IFCO members are meeting with Ontario Ministers, members of Treasury Board and MPPs this month.

Rationale for Independent Planning and Facilitation: Why MCSS Should Move Quickly
This document presents nine rationales for independent planning and facilitation which will help build a sustainable, innovative, cost effective direct individualized funding program.  With this document, IFCO calls on MCSS to move ahead with independent planning and facilitation as a vital infrastructure to ensure the success of direct funding.

EXTRA!!! Common Vision EXTRA!!!
A news summary including excerpts from interviews with leaders in the social change movement.

IFCO issues are vital for Ontario. Look up the many current resources on the IFCO website.


LONG-TERM CARE HOME ACCESS PROTOCOL
FOR ADULTS WITH A DEVELOPMENTAL DISABILITY

Disability advocates have been upset to learn that the Ontario Government (through the Ministries of Community and Social Services and Health and Long-Term Care) has made plans for adults with a developmental disability and relatively high needs to be admitted to long-term care facilities instead of opening community living opportunities for them. Advocates of inclusion and community living see a discrepancy between this new "access protocol" and the values and strategies discussed in the MCSS "transformation process" for developmental services since mid-2004.
Read the Ministries' Access Protocol (July 2006)
Read a letter of serious concerns by Shelley Martel MPP
Read Doublespeak, a critique by Dr Patricia Spindel
(we have permission to share this).

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CANADIAN AUTISM NEWS

A National Autism Strategy?
The Standing Senate Committee on Social Affairs, Science and Technology has begun a series of meetings described as an "inquiry on the issues of funding for the treatment of autism and discussions around a national autism strategy."  Click for transcripts of the evidence on
November 2, 2006

November 8, 2006

November 9, 2006

For those of us with long experience and long memories, it is momentous that the Canadian Senate should be discussing what might be done by the federal government to help people and families who live with autism.
Most of the focus is on autism in children, but professional witnesses at the third of the meetings do refer to issues that concern autistic adults and their families.

For example, Dr Blake Woodside of the Canadian Psychiatric Association notes:
a) Adults affected need services and..there is a certain degree of chaos in the way our society is trying to deal with this right now";
b) "From a medical perspective... there are people bleeding... and they need help.. it is critical to try and offer these people something to alleviate their suffering."
c) "Autism spectrum disorders affect individuals so differently it is unlikely that there is one recipe or intervention... we need a flexible approach because different people need different services."
d) "I..urge you not to get caught up in trying to find a tidy policy package that will be easy to sell...[We need' some steps that can help people improve their quality of life now, ...some ...medium-term steps [to] improve outcomes through initiatives like guidelines, sharing of knowledge and the training of cross-disciplines, [and] a significant investment in research over the longer term....
e) "This is is not a condition likely to attract research investment by industry..it needs to be governments that invest in the long-term research for effective interventions."

Other professionals, who specialize in autism and representing child and adolescent psychiatry, pediatrics research, speech-language pathology, psychology and occupational therapy, also referred to the shortage of expertise and resources for adults with autism spectrum disorders.

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GENERAL AUTISM NEWS

Autism is featured in NEWSWEEK on newsstands Nov 27

In the cover story: "Growing Up With Autism" (p. 46). Senior Editor Barbara Kantrowitz and Assistant Editor Julie Scelfo look at how families are coping as their autistic children reach adolescence and young adulthood--and how the goals of the autism activist movement are evolving as the disorder continues to challenge science. Twenty years ago, thousands of these parents banded together-largely out of desperation-to raise awareness of a once rarely diagnosed, often overlooked disease. They have since lobbied passionately to get better education for their kids and more money for research into autism. The culmination of much of this parental activism is the Combating Autism Act, which now looks to be close to passage. But while a win in Washington may lift families' spirits, it won't really change much in their day-to-day lives. Most government-sponsored educational and therapeutic services for autism stop at age 21. And as young people with autism approach adulthood, some parents can't help but feel the huge gaps between their child's lives and others the same age.  

In 
"A Terrible Mystery" (p. 52). Assistant Editor Mary Carmichael reports on the latest discoveries in neurology and genetics that are helping scientists unravel the shroud of mystery that has hung over autism since its discovery in 1943 and hopefully, one day find a cure. But with each new discovery, more questions arise. "There are perhaps hundreds of different causes, and I think the field is finally coming to grips with that," says UCLA neurogeneticist Dan Geschwind.

Ped Med: Autism guards its secrets

An overview of the dozens of studies exploring any connections between the incidence of autism and the use of thimerosal, the mercury-bearing preservative in various childhood vaccines. The author declares: "Exactly what and even how much doctors know about autism and its causes is a matter of debate."


Ped Med: Autism research stance shifting?
While many consider the case against vaccines and autism closed, there is some movement afoot among public-health agencies and policymakers who are shifting away from an automatic dismissal of environmental factors. They say they also are paying more attention to parental feedback.

 
When Two Minds Think Alike
Another statement of Simon Baron-Cohen's theory of "assortative mating" in which the "central idea is that both mothers and fathers of children with autism (or its milder variant, Asperger Syndrome) share a common characteristic and have been attracted to each other because of their psychological similarity."


Conference on Autism: Witness and Hope

Fordham University hosted “Autism and Advocacy,” a daylong conference on autism spectrum disorder, on Friday, Oct. 27 at the McNally Amphitheatre, Lincoln Center campus, New York, featuring an opening address by Timothy P. Shriver, Ph.D., chairman of the board of Special Olympics, Inc. The conference included panel discussions about different kinds of advocacy practiced with and by persons with autism, especially those forms grounded in moral and religious traditions. Conference organizers hoped to promote dialogue and greater engagement, with autism advocacy as an integral component of work for social justice.

The morning session featured clergy from Jewish and Christian traditions sharing their experience in advocacy for persons with autism in liturgical and educational settings. The afternoon session focused on innovative forms of community, including a burgeoning Internet presence, building through the gifts of advocacy and self-advocacy. Many persons with autism and their families were in attendance throughout the day. Ontario's Gloria Pearson-Vasey was one of the speakers.


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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


Autism One Radio Schedule
A Worldwide, Web-Based Radio Station for the Care, Treatment, and Recovery
of Children with Autism  http://www.autismone.org/radio


Tuesday, November 28, 2006, 7pm, in Toronto
Special Screening of Snow Cake 

Special public awareness event about autism, in support of Autism Ontario.
Varsity Cinemas  (Bay & Bloor, in the Manulife Centre) for a special screening of Snow Cake, starring Alan Rickman, Sigourney Weaver and Carrie-Anne Moss. Alan Rickman, will be attending the event and the reception immediately following the screening
Seating is limited and tickets are expected to sell quickly. For ticket information, go to www.autismontario.com and click on the links to Snow Cake on the main page.
Snow Cake was presented  at the 2006 Toronto International Film Festival http://www.e.bell.ca/filmfest/2006/films_schedules/films_description.asp?id=280 but it has not yet been released more broadly. Additional details about the movie may also be found at http://www.snowcakemovie.co.uk/
This event was made possible through the generous support of Alliance Atlantis and Roots Canada.  Staff and local parents of Autism  Ontario have previewed the movie and are supportive of the film's message about one family's experience of autism in their lives. There will also be an opportunity to purchase items from the Roots store at 25% off. 


Friday, December 8th, 2006, 9:30 – 3:30
ADULTS WITH AUTISM SPECTRUM DISORDERS, MENTAL HEALTH & BEHAVIOURAL ISSUES
Presented by J. Dale Munro, MSW, RSW, FAAMR, Clinical Supervisor; Dr. Lillian Burke, Ph.D., C. Psych, psychologist, of Regional Support Associates
Location: Elmhurst Inn, Ingersoll
Cost: $45

To register for RSA workshops or training please contact:
Jayne Joyes - Administrative Assistant   (519) 421-4248
Toll Free: 1-800-640-4108  Fax: 421-4249
or email Jayne Joyes at: jjoyes@wgh.on.ca


Advance Notices:

January 25 - 27, 2007,  in San Diego
Learning to Listen: Personalizing Supports Across the Life-Span
Conference topics include
  • The role of movement differences/disturbances in communication and behavior challenges
  • Pitfalls of literal interpretation of behavior: Successful interactions with individuals whose unconventional ways of communicating make you think they are not listening and wouldn’t understand
  • Sensory-movement issues and stress
  • Personalizing accommodations and life options for meaningful inclusion.
  • Panels of parents and of self-advocates who address the processes and supports that make a real difference in their lives
Conference presenters
Anne M. Donnellan, Ph.D.
Martha R. Leary, M.A., CCC-SLP
Jeff Strully, Ph.D.
Jodi A. Robledo, Ph.D.
Panel of Parents and Self-Advocates
Click for Winter Autism Conference details


8-10 February 2007, in Herning, Denmark

Welcome to Meeting of Minds 2 - A conference on autism and related disorders

Social Cognition and Emotion in Autism and Related Disorders - A Multidimensional Approach - Research and Practice
Keynote speakers include
Daniel Stern, Uta Frith, Simon Baron-Cohen, Peter Hobson, Paul Harris, Stephen von Tetzchner, Hans-Christoph Steinhausen, Anthony Wigram
For more details, visit: http://www.meetingofminds2.dk/


March 1-4, 2007

Autism Vancouver Biennial Congress 2007
L
eading experts on autism spectrum disorders, from England, Canada, and the United States, will focus on ways to improve the quality of life for the affected individuals and their families/caregivers by conducting presentations in the areas of educational and biomedical interventions, research, adjunct therapies, diet and nutrition, and family issues.

Speakers include Dr. Temple Grandin, Dr. Andrew Wakefield, Dr. Jeff Bradstreet, Dr. Simon Baron-Cohen, Dr. Doreen Granpeesheh, Dr. Phillip DeMio, Dr. Stephen Shore, Shannon Kenitz, Dr. Lauren Underwood, Dr. Barry Prizant, Stan Kurtz, Dr. Diane Twachtman-Cullen, Dr. Teresa Bolick, Dr. William Shaw, and plus more experts in the field of autism.

Dr. Jeff Bradstreet will present, "Recovery is Possible: Using Biomarkers to Determine the Best Clinical Therapies," Saturday, March 3rd at 8:00 am - 9:30 am. For the entire schedule, click here.


May 23 – 27, 2007, Sheraton Centre Toronto

2nd International Come To Your Senses Conference

Opening the Sensory World to Children & Adults with Complex Disabilities

By MukiBaum Treatment Centres

Call for Papers NOW OPEN!

We invite professionals, parents, caregivers, persons with disabilities, researchers and consumers to present on a wide array of topics within the realm of Sensory-Motor Therapy and people with disabilities.  The goal is to share and disseminate knowledge and experience from around the world so that we can better understand the Sensory Reality of people with disabilities and the many forms of treatment that exist. 

If you are interested in presenting at our conference, visit the website at www.mukibaum.com and click on the link for Submit Paper. The complete details and rules for submission are outlined on the website.

Registration is now at http://www.sensoryconference.ca/ and you can take advantage of Early Bird rates.  There will be opportunities for you and your organization to exhibit, become a sponsor of the event and participate in a number of activities throughout the conference.



June 15 & 16, 2007

2007 Autism Spectrum Disorders Conference
Acceptance and Opportunities: See the Potential

A conference that will explore best practices and approaches for increasing quality of life, opportunities and independence. Save the Date! Friday, June 15 & Saturday, June 16, 2007 Toronto, Ontario
Member and Early Bird Registration discounts are available.
Keep an eye on www.autismontario.com for more information to be released in the coming months.


31 August, 1 & 2 September 2007, in Oslo, Norway
‘A WORLD OF POSSIBILITIES’
8th International Congress Autism Europe

Abstract submission, registration and further Congress information:
http://www.autismcongressoslo.org

CLOSING DATE FOR ABSTRACT SUBMISSIONS : 30 NOVEMBER 2006
Delegates are invited to share their knowledge, skills and expertise on a range of topics intended to promote the practical outcomes, values and implications of research in terms of its contribution to the quality of life and development of persons with ASD.
-      keynote symposia and discussion
-      poster presentations linked to main themes
-      opportunities for new generation researchers and operators in the field of autism to present their work
For further information and details regarding submissions, please visit the Congress website: http://www.autismcongressoslo.org/comweb.asp?ID=1&segment=1&session=
E-mail: president@autismeurope.org

Do not miss this opportunity to contribute to opening up ‘a World of Possibilities’ for people with autism and their families, view the 4th International Art Exhibition of Persons with Autism and to visit Oslo and its charming surroundings.

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RESOURCES, BOOKS, WEBSITES, COURSES


How Should I Evaluate an Adult for Possible Asperger's Syndrome?

One sample of resources on   Medscape's ASD Resource Center

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING PERCEPTIONS AND 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 perceptions, problems and success stories, if you think others might help or benefit.

If you wish, we will not print 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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