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. Nor do we necessarily agree with opinions that may be expressed.

 

OAARSN NEWS BULLETIN
 
12 March 2005

It's Our Anniversary!

Five years ago, we launched the Ontario Adult Autism Research and Support Network site.

In that time, there has been an explosion of information and opinion about autism. In March 2000, the Dogpile search engine found nearly 300,000 pages on the World Wide Web that mentioned the keyword "autism." A Google search in March 2005 produces a total of 20 times that number. Adult autism resources were very scarce five years ago, but a search for "adult autism" today turned up 3,660 references. Autism issues in Canada were scarcely reflected on the web five years ago. Today a search for "autism spectrum disorders" and Canada found more than 4,200 hits.

During the past five years, general public awareness of autism spectrum disorders in children has surely increased, with rising expectations of early intervention for the greatly increased numbers of children diagnosed.

For adults on the autism spectrum, the past five years has seen much more information about the prevalence of Asperger's Syndrome and the expression of an autistic culture. For more severely affected adults, signs of hope and helpful resources are harder to find.

We welcome news of Canadian publications and meetings that share effective strategies and success stories.

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GENERAL AUTISM NEWS

U.S. Autism Rates Rise Sharply
"Autism prevalence is increasing with successively younger children, particularly those born between 1987 and 1992, epidemiologists report in the March issue of Pediatrics. To assess prevalence trends in autism, researchers from Johns Hopkins Bloomberg School of Public Health and the University of Minnesota used data reported to U.S. Department of Education's Office of Special Education Programs. The study included children who were aged 6 to 17 between 1992 and 2001. It's a worrisome trend, experts said, magnifying questions on the causes for the increasing rates while placing a tremendous strain on the nation's special education resources."

Autism rises despite MMR ban in Japan
A study of more than 30,000 children in the city of Yokohama, where the number of children with autism continued to rise after the MMR vaccine was replaced with single vaccines. The main author concludes that the vaccine "cannot have caused autism in the many children with autism spectrum disorders in Japan who were born and grew up in the era when MMR was not available". His team's findings appear in the Journal of Child Psychology and Psychiatry.

MMR – Autism Epidemiological Studies: Just a distraction
Definitely worth reading. Columnist, Dr F. Edward Yazbak, discusses these propositions:
  • Epidemiology cannot disprove causation
  • Epidemiological studies have come and gone
  • The recently-published Japanese research is irrelevant
The Age of Autism: Series of articles in UPI by Dan Olmsted
who addresses intriguing questions of whether autism spectrum disorders have been always with us or
whether they appeared only in the 20th century.


The Age of Autism: Donald T. and Fritz V.  (9 February 2005)
A review of the early diagnoses by Kanner and Asperger in the 1940s, as part of a discussion of the questions: "Is autism a new disorder?" or "Have there always been people with autism, just not recognized?"

The Age of Autism: 'Absolutely different' (18 February 2005)
A re-examination of the notes on Virginia... the oldest of the 11 children in Kanner's 1943 paper, "Autistic Disturbances of Affective Contact," which first named "autism" as a distinct and devastating disorder. Kanner said autistic children differed "markedly and uniquely" from anyone ever described.

The Age of Autism: Educated Guesses (25 February 2005)
There was something similarly strange about the children who caught Leo Kanner's attention starting in 1938. He called their behavior "autistic." And there was something strangely similar about the families they came from. "There is one other very interesting common denominator in the backgrounds of these children. They all come of highly intelligent families," Kanner wrote at the end of his historic study of 11 children, published in 1943.  "All but three of the families are represented either in Who's Who in America or in American Men of Science, or both."

The Age of Autism: Feedback Loop

Some of the tons of comments and criticism Dan Olmsted received in response to his first three essays in The Age of Autism series.

The Age of Autism: Backward (10 March 2005)
"Re-evaluating Kanner's 11 case studies of children born from 1931 to 1938, there is ample reason to wonder whether some of them developed autism after a period of normal development." A pediatrician found evidence in case notes that would support the theory of regressive autism; the first cases also included "physical problems centered on food, digestion and illnesses that could suggest allergic reactions or a weakened immune system."

Eye Contact Triggers Threat Signals In Autistic Children's Brains
"Brain tests at the University of Wisconsin-Madison suggest that autistic children shy from eye contact because they perceive even the most familiar face as an uncomfortable threat. Tracking the correlation between eye movements and brain activity, the researchers found that in autistic subjects, the amygdala - an emotion center in the brain associated with negative feelings - lights up to an abnormal extent during a direct gaze upon a non-threatening face. Writing in the March 6 issue of the journal Nature Neuroscience, the scientists also report that because autistic children avert eye contact, the brain's fusiform region, which is critical for face perception, is less active than it would be during a normally developing child's stare."

Autism Treatment Network
Leading American experts in autism are banding together to form the Autism Treatment Network (ATN), a national, non-profit organization for doctors and medical centers aimed at improving autism treatment. ATN includes doctors and other health experts from six leading medical centers who will evaluate medical conditions present in autism and provide "best-practice" guidelines for the identification and treatment of these conditions. They will also organize regular conferences and set up regional "centers of excellence" where experts can teach others the latest in state-of-the-art autism care.

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SPECIAL ANNOUNCEMENTS

CHANGES TO ONTARIO DISABILITITY SUPPORT PROGRAM (ODSP)

On December 15th 2004 the government introduced changes to the Ontario Works and Ontario Disability Support Program regulations.  The changes took effect immediately, and will have an important effect on people applying for social assistance after December 15th 2004, and on those already on assistance.


For the ODSP policies, consult:
http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/Publications/odspisdir.htm

For the OW policies, consult:
http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioWorks/Publications/ow-policydirectives.htm


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Autism Society
Ontario is offering a number of scholarships for 2005
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Regional Asperger Syndrome Clinic Days
In cooperation with Autism Society Ontario, Kevin Stoddart will be offering regional Clinic Days for families of individuals with a diagnosis (or suspected diagnosis of) Asperger Syndrome. One to two hour consultations are currently available in the cities listed below. The fee of $100.00 per hour of consultation is payable at the end of the session. This also provides an opportunity for local service providers to receive consultation about children and adults with whom they are working.
To arrange an appointment, send an email to kevin.stoddart@aspergers.net and include a summary of the specific issues that you would like him to address. Possible areas of consultation include:
  • Managing a difficult behaviour
  • Dealing with mental health issues
  • Developing a comprehensive treatment plan
  • School-related problems
  • Discussing the diagnosis with affected youth
  • Fostering social skills in children
  • Preparing for adulthood
  • Living with a partner with Asperger Syndrome
Clinic Days are now scheduled in:
Richmond Hill on March 9, April 13, May 11 and June 8, 2005
London on March 24, 2005
Cornwall on April 8, 2005
Regular office hours are held in downtown Toronto
Toronto Office: 180 Bloor Street West, Suite 601, Toronto, Ontario M5S 2V6
Phone: 416-920-4999 Email: kevin.stoddart@aspergers.net

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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

Aspergers Society of Ontario Workshop Series in Toronto, evenings
Monday April 11: An Introduction to Asperger Syndrome,  Dr. Kevin Stoddart
Thursday April 21: Asperger Syndrome: The School Experience, Georgina Rayner
Monday May 9:  Parenting Children with Asperger Syndrome, Fern Quint
Thursday May 19: Teens and Young Adults with Asperger Syndrome, Dr. Kevin Stoddart
Monday June 20: Financial Planning for the Future, Mary Stokes
Click for more information and registration form
Note the new Canadian book on Asperger Syndrome from Jessica Kingsley Publishers: "Children, Youth and Adults with Asperger Syndrome: Integrating Multiple Perspectives." For more information go to www.jkp.com


March 18, 2005, in Novi, Michigan
Epilepsy, Autism Spectrum Disorders and Behavior
Autism Society of Michigan's Annual Spring Conference 

Information on registration coming soon.

Outcomes: Participants will--
1. understand the different seizure disorders that occur with autism and the impact on autism.
2. understand the role of seizures in challenging behavior
3. learn how seizures affect sleep disorders
4. learn practical solutions for supporting the individual with seizures and ASD.

Autism Society of Michigan has a most impressive program of other workshops and meetings in the first quarter of this year. Explore its website



March 22nd and 23rd, 2005, 9am-4:30pm
Are We Doing What We Say We’re Doing?
Evaluation Workshop

At The Elmhurst Inn, Ingersoll Ontario
Click for flyer and registration form
This interactive two day workshop will teach you:
  • Practical, hands-on experience in completing an evaluation of services
  • How to use the Are We... evaluation tool
  • The art of evaluation
  • How to conduct an internal and peer review
  • Develop the right questions
  • Interviewing skills
  • How to review your data to find common themes, consolidate and summarize your information.

Wednesday, March 30, from 7:00 in Kitchener
“My Sad is all Gone”:
Various therapeutic techniques for helping Autistic people

with Thelma Wheatley, author, teacher & parent
Kitchener Public Library, in the Schneider Room
In association with Waterloo Wellington Autism Services & Autism Society Ontario
Thelma Wheatley is described as the only Canadian parent of an autistic adult who has published a book about him. “My Sad is All Gone” was published in October 2004 and now you can meet the author and her son Julian. Thelma will speak about the specific drug protocol that helped her son control his violence and aggression, also about other helpful therapy techniques including music and art therapy.


Thursday, March 31 (evening) and Friday, April 1, in Waterloo

2005 Spring LD Conference
Learning Outside the Box
“Piece by Piece: putting the LD puzzle together”
Waterloo Recreation Complex, Waterloo, Ontario
KEYNOTE SPEAKER Thursday evening:Dr Maggie Mamen, Ph.D., C.Psych.
Friday Breakout Sessions include: Learning Styles / Multiple Intelligences; Written Expressive Issues;
Auditory Processing Challenges; Social /  Emotional Impact of LD; Sensory Integration and Motor Deficits;
Programming for the LD student
For more conference details, or to register on-line:
visit our website at www.learningoutsidethebox.ca
Or contact us at
info@learningoutsidethebox.ca



April 5, 2005, 5:30-8:30 pm, In Kitchener
Community Connections and Summer Recreation
Information Evening
An information evening concerning support services and summer recreation programs for individuals with disabilities and their families.
At St. Mary’s High School, 
1500 Block Line Rd. Kitchener.
The Waterloo Catholic District School Board, Waterloo Region District School Board and Developmental Services Access Centre, with partnering agencies invite you to an evening where community organizations, and school boards share information concerning programs and services in the Waterloo Region for individuals with disabilities. This evening is an effective way to gain valuable knowledge for transition planning.
For your convenience the “Summer Recreation Information Evening will be held at the same time to provide information concerning inclusive and specialized summer programs in Waterloo region.
For more information please contact, Community and Workplace Officer, Waterloo Catholic District School Board, 578-3660 ext.325


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.


Friday, April 8,
9am to 4:30 pm, in London
Art Sheil Workshop
Suicide Recognition and Response
Howard Johnson Motel, 1170 Wellington Rd. S, London
Registration begins at 8:30am. Deadline for registrations is March 25.
Workshop is open to a minimum of 8 and a maximum of 15 participants. Cost $79.00.
Register on-line at
www.artswork.on.ca/training selecting this workshop.
Phone 519-294-6814 E-mail  art@artswork.on.ca Box 690, Parkhill Ont. N0M 2K0


April 8 to 10, 2005, in Toronto
"Living Well: Beyond Existing"
2nd ICE conference 2005 (Independence, Community, Empowerment):
At Travelodge Hotel in Toronto, Ontario at Keele and 401.
ICE Conference Committee includes members from Ontario March of Dimes, Speaking Differently, clinicians from AAC Centres around Ontario, and AAC users. The Ontario Federation of Cerebral Palsy is sponsor.
The ICE Canada 2005 theme is "Living Well: Beyond Existing" and key topics will be:
Recreation/ Leisure/ Travel
Sexuality/ Marriage/ Dating/ Relationships
Aging with a Disability
Spirituality/ Death/ Grieving
Advocacy/ Rights/ Independence
In keeping with ICE 2002 the Town Hall Meeting will again be playing an important role. During this discussion, which is chaired by an individual who uses AAC, only those who use AAC will be allowed to speak.
In addition, on Saturday night, Speaking Differently will be performing the play Broken Speech. This play is "about how one tries to survive in a world that is primarily based on spoken word. Broken Speech is a vivid, hilarious, and insightful commentary on how one person is able to regain his once lost voice."
For more information, please check out the official ICE website at: www.iceconference.ca where you will soon be able to find email addresses related to such areas as Registration, Attendant Services, General Information, and website feedback. There will be a mailout of brochures; you can register and pay on-line by mid-February.

 
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, accommodations, costs and directions.
contact the Upper Canada Chapter for a brochure dkeillar@sympatico.ca


April 8-10, 2005, Horseshoe Valley
Family Alliance Ontario and Integration Action for Inclusion proudly present the
Annual Family Conference 2005
"Beyond Citizenship"
Citizenship that recognizes equality, inclusion, human rights and our contribution.
An event for the whole family
Click for conference information



Friday, April 29, 2005
in Guelph
Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Guelph Services for the Autistic and OAARSN invite 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, learning 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  Register by March 11 to take advantage of lower fees

April 28 – 30th 2005 in Ottawa

National Safety Symposium: Crime Prevention and Independent Living

The Canadian Association of Independent Living Centres (CAILC) is holding a National Symposium, April 28 – 30th 2005 in Ottawa.  CAILC will partner with the Ottawa Police Services, who are celebrating their 150th anniversary in 2005.  The funding for this project is through the National Crime Prevention Initiative.

This Symposium will bring persons with disabilities together with municipal and provincial/territorial leaders, crime prevention experts, and first responders to discuss the issues and programs that affect the ability of persons with disabilities to live independently and safely in their own communities. It will foster an integrated and comprehensive approach to crime prevention and Independent Living.

We will showcase crime prevention and Independent Living strategies and highlight programs from across the country.  There will be time to share ideas and expertise, create awareness and educate, and facilitate activities and partnerships from all areas of Canada.

Watch for announcements and registration information on the CAILC website in November at www.cailc.ca



Saturday, May 7, 2005, 10am-3pm
Connections 2005: the 6th annual resource fair for persons with disabilities
Meet representatives from Peel and Halton service agencies!
Ste. Famille Secondary School, 1780 Meadowvale Blvd, Mississauga
Click for flyer
Click for application form to hold a display


May 29-31, 2005, in London
"Creating a Community that Works for Everyone"
Community Living Ontario 2005 - 52nd Conference
and AGM
Hilton London Hotel, London, Ontario.
Contact:
Shirley Yuen, Conference Coordinator,
e-mail:
shirley@communitylivingontario.ca,
tel. 416-447-4348, ext. 226  
http://www.communitylivingontario.ca/



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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


Transforming Ontario's Developmental Services
The decision of the Ontario Government to commence a process of transforming services it funds for people with developmental disabilities is an opportunity for all concerned about present inequities and, more positively, for all to plan and implement better lives in people's home communities.
Click for reports and links from 2004.

The Ministry is hosting a series of six expert policy forums on the transformation of developmental services in Ontario in conjunction with various partners. These forums are taking place between October 2004 and March 2005.

  • Specialized Resources
  • Residential Options
  • Citizenship and Advocacy
  • Quality Assurance
  • Funding Models (planned for March 30)
  • Supporting and Strengthening Families (planned for March 31)

Autism Society Ontario is taking part in these forums and other discussions.
Click for ASO's Submission to the Preliminary Discussion Paper, 2004

Policy Forum on Citizenship and Advocacy
reported by Nancy Cherry of Waterloo

Policy Forum on Residential Options

reported by Lynda Beedham

The developmental services transformation draft should be complete by summer 2005 with the final blueprint and implementation occurring in fall 2005. We'll try to keep you posted about opportunities to discuss likely policy trends.

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BOOKS, WEBSITES AND OTHER RESOURCES

Shutdowns and Stress in Autism
“We are parents and scientists interested in improving the lives of those living with autism. We present information which is based upon our success with of a young, high-functioning autistic girl whose symptoms worsened  when she entered a mainstream classroom. Our observations and study of the literature led us to believe that her symptoms were caused in part by a severe, abnormal reaction to stress which caused her body to "shutdown" in order to recover. A complete discussion of this subject is in Shutdowns and Stress in Autism including:
- A description of shutdowns and what triggers them.
- How excessive stress can impair the brain.
- How to determine if your child has shutdowns.
- How to help a shutdown-prone child in school.
- Descriptions of shutdowns by autistic adults.
A scientific version of the paper provides a detailed discussion of the physiological basis and mechanisms involved. See  Shutdown States and Stress Instability in Autism

The Autism Perspective - TAP Magazine Launches

TAP Magazine is a national and international, quarterly full-color publication devoted to the subject of autism spectrum disorders, for parents, professionals and persons with autism. The magazine will cover a variety of issues from the "here and now" of everyday life including many of today's triumphs, struggles, and hope. The magazine promises to be about options and different perspectives without taking sides. This will be a forum for discussion for everyone in the autism community. Click for subscriptions and further information


NY-Based Magazine Dedicated To Autism and Developmental Disabilities Goes National
Evelyn Ain, a NY-based autism advocate and parent, is now taking her magazine, Spectrum: For Parents of Children with Autism and Developmental Disabilities, to a national circulation to provide families with a lifestyle publication specifically catering to their needs and the many challenges they face.... For subscription information


Adolescents, Youth and Adults with Autism Spectrum Disorders
Parentbooks  booklist
201 Harbord Street,
Toronto, ON M5S1H6
phone (416) 537-8334
fax (416) 537-9499
toll free 1 800 209-9182
info@parentbooks.ca
www.parentbooks.ca


COMING APRIL 25, 2005:

Reflections of Self, by Sondra Williams.

 

This is a powerful and insightful look at life from the perspective of Sondra Williams, an adult with high-functioning autism. Her articles and poetry beautifully illustrate the unique strengths and challenges that she experiences. Topics covered include general information about what it is like to have autism, as well as Sondra’s perspectives on her 18-year marriage and her four children (who have all been diagnosed with ASD), her childhood memories, the therapy that has allowed her to discover and value her real self, and her faith. This book is an excellent resource for parents, grandparents, professionals, and individuals with ASD!

 

NOW AVAILABLE...A DVD resource with Sondra Williams, "Define Me." Learn Sondra's thoughts about being a person with autism, about the diagnosis that is now thought to occur in one in every 150-300 people, and discover practical suggestions for promoting social understanding in the home, school, and community.

 

Only $29.95!

 

Purchase online now...

 

 

 

NOW AVAILABLE...  Diagnosis Asperger's: Nick Dubin's Journey of Self-Discovery. Click here for more information about the DVD and about Nick Dubin.

This is a fabulous way to introduce friends, family, and professionals to Asperger's Syndrome!

 

Only $29.95!

Purchase online now...

 

 

Now Available...The Social Stories™ Quarterly!

Click here for more information, or to subscribe.

 

The first issue, All About Me: I Am Unique, is now available. It contains Social Stories™ and Social Articles (for older individuals) around the themes of interests, strengths, and the uniqueness of being an individual. It also includes the often-requested Social Story™ Pictures of Me, introducing an individual to his or her diagnosis. (This Story originally appeared in The Morning News Fall 1996 issue).

Order a ONE YEAR Quarterly Subscription online.

 


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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 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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