ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN


OAARSN offers a rich 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

This bulletin is best read in Mozilla Firefox or Netscape. You may download Mozilla free from www.mozilla.org

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.


Celebrating Six Years of OAARSN

The Ontario Adult Autism Research & Support Network was launched in March 2000, when autism had a tiny presence on the Internet. Our early news bulletins included items about autism in children. Autism in adults was hardly ever considered in other media. We still have a long way to go before adults with autism, in Ontario and elsewhere, have better lives.

There has been a huge expansion in autism awareness through the Internet in the past six years. In March 2000, we used the Dogpile search engine to find nearly 300,000 pages on the World Wide Web that mentioned the keyword "autism." A Google search in March 2006 produces 63 times that number. Adult autism resources were very scarce in March 2000, but a search for "adult autism" now turns up 22,000 references, with 10,000 for “autistic adults”. Autism issues in Canada were scarcely reflected on the web five years ago. A search for "autism spectrum disorders" and “Canada” in March 2006 finds more than 134,000 hits. There are even 443 hits that combine the keywords “adults” and “Canada” with the phrase "autism spectrum disorders" and do not include “children”.

Read about why OAARSN was started and the tasks still ahead

Visit OAARSN's website and keep in touch through the OAARSN Listserv (send a message requesting to join to gbloomfi@uoguelph.ca).

 


OAARSN NEWS BULLETIN
 
12 April 2006


April marks the 35th Anniversary of National Autism Awareness Month (in US).


In Ontario, it is Toonies for Autism month.
Visit the new Toonies for Autism website


Calling Older Adults with Autism or their Parents/Caregivers

Dr Kevin Stoddart is presenting at a roundtable discussion on ageing and ASDs at the International Association for the Scientific Study of Intellectual Disabilities Conference being held at the University of Toronto at the end of April. The session will serve as a preliminary meeting for a large-scale conference the University of Illinois at Chicago is organizing for March 2007.

He is interested in talking to caregivers (parents or professionals) of ageing (ie 40 years and over) individuals with an ASD. Of particular interest is those who have a cognitive delay and autism, although I am also interested in the "more able" individuals with autism. His focus will be on health issues, including physiological and neurological effects facing this group.

If you would like to share perceptions from your experience, please contact him:
K. P. Stoddart, Ph.D, R.S.W.
180 Bloor Street West, Suite 601,
Toronto, Ontario. M5S 2V6
kevin.stoddart@aspergers.net or
kevin.stoddart@utoronto.ca
(416) 920-4999


Autism Awareness in the Canada's Parliament
On Thursday, April 6, 2006, Peter Stoffer MP tabled two Private Members' Bills in the House of Commons that concern autism.  The first, Bill C-211, would include autism treatment in Medicare if passed.  Please spread the word among your colleagues about this Bill and write to your MP and encourage federal politicians to support it, to debate it, to vote on it, and to PASS IT!

Plans are also being made by the National Alliance for Autism Research (NAAR) Canada and Autism Speaks for:
The 2nd Annual Walk for Autism Research 
on Sunday, May 14, 2006, in Toronto
See more below, under Announcements

_________________________________________________________


GENERAL AUTISM NEWS

Weak brain links 'explain autism'
From a BBCNews Report:
"The difficulties people with autism have in relating to others could be due to poor communication between brain areas, scientists suggest.
It may explain why they do not interact well, as the weak links mean they benefit less from social situations. It had been thought that their lack of social skills was due to abnormalities in particular brain areas.
"The study in Neuroimage, carried out by University of London researchers, compared brain scans of 32 people..
The researchers took brain scans of 16 people with autism spectrum disorders (ASD) and above-average IQs, as well as those of 16 unaffected volunteers. They were shown four images on the screen - two of houses and two of faces. They were then asked to concentrate on either the faces or houses and decide if they were identical. Scans showed there were marked differences in the brain activity of the two groups.
"In the control group, paying attention to pictures of faces caused a significant increase in brain activity.
But for people with ASD, paying attention to faces made no impact at all on the brain, explaining their lack of interest in faces. Both groups had the same reaction to houses. ... "

Richard Mills, director of research for the National Autistic Society, said: "We welcome this research, which examines the underlying mechanisms related to complex 'instinctive' social responses.
"We know that many people with ASD have particular difficulties in this area and we are hopeful that an improved understanding of these processes will enable people to receive appropriate and helpful support."


Autism: A Brain Disorder, Or A Disorder That Affects The Brain?
by Martha R. Herbert, MD. PhD. Clinical Neuropsychiatry (2005) 2,6,354-379
Pediatric Neurology and Center for Morphometric Analysis,
Massachusetts General Hospital, Harvard Medical School
Summary
Autism is defined behaviorally, as a syndrome of abnormalities involving language, social reciprocity and hyperfocus or reduced behavioral flexibility. It is clearly heterogeneous, and it can be accompanied by unusual talents as well as impairments, but its underlying biological and genetic basis is unknown. Autism has been modeled as a brain-based, strongly genetic disorder, but emerging findings and hypotheses support a broader model of the condition as genetically influenced and systemic. These include imaging, neuropathology and psychological evidence of pervasive (and not just specific) brain and phenotypic features; postnatal evolution and chronic persistence of brain, behavior, and tissue changes (e.g., inflammation) and physical illness symptomatology (e.g. gastrointestinal, immune, recurrent infection); overlap with other disorders; and reports of rate increases and improvement or recovery that support a role for modulation of the condition by environmental factors (e.g. exacerbation or triggering by toxins, infectious agents, or other stressors, or improvement by treatment). Modeling autism more broadly encompasses molecular and cellular mechanisms, as well as chronic tissue, metabolic and somatic changes previously addressed only to a limited degree. The heterogeneous biologies underlying autism may conceivably converge onto the autism profile via multiple mechanisms that all somehow perturb brain connectivity. Studying the interplay between the biology of intermediary mechanisms on the one hand and processing and connectivity abnormalities on the other may illuminate relevant final common pathways and contribute to focusing the search for treatment targets in this biologically and etiologically heterogeneous behavioral syndrome.

To read the entire report, click here


Autism 'Epidemic' in Schools Called Illusory
A report that has started to stir controversy and opposition....
An apparent increase over the past decade in the prevalence of children labeled as autistic in special education programs may be a phantom conjured by diagnostic substitution. "My research indicates that the increase in the number of kids with an autism label in special education is strongly associated with a declining usage of the mental retardation and learning disabilities labels in special education during the same period," said Paul T. Shattuck Ph.D., MSSW, a pediatrics researcher at the University of Wisconsin.
"Many of the children now being counted in the autism category would probably have been counted in the mental retardation or learning disabilities categories if they were being labeled 10 years ago instead of today," Dr. Shattuck added. He outlined his case for the rise in autism being due largely to diagnostic substitution in the April issue of Pediatrics.


Siblings of Disabled Have The
ir Own Troubles
When he was growing up in Oregon, Graham Seaton found it virtually impossible to bring children home from school to play. "I knew there was something wrong with my place," he recalled. "But I didn't know how to explain what that was."
He knew that he would have to tell his friends why they could play only in his bedroom -- and only with the door locked. And that, ultimately, he would have to explain what was "wrong" with his older brother Burleigh, who is profoundly autistic. "I just didn't have the words," he said.
Now 30, Mr. Seaton said he realized that as a child, he felt he could not ask his parents for those words. "I was so aware I couldn't make a big deal with my family," he said.
"My parents already had enough on their hands."
An estimated seven million "typically developing" American children have siblings with disabilities.....


_______________________________________________________________________________________________________________________

SPECIAL ISSUES IN ONTARIO

Safety and Preparedness for Children with ASD
Message from Margaret Spoelstra, Autism Society Ontario
Webcast Recording of Dennis Debbaudt's live presentation on March 29, 2006 is available for viewing at your leisure, but only until June 30, 2006. ASO received great reviews from participants. Don't miss this opportunity. It's free.
English: http://events.streamlogics.com/autism/mar29-06/en/index.asp
Français: http://events.streamlogics.com/autism/mar29-06/fr/index.asp
 

New Study Demonstrates Impact of Making Disability Supports Personalized

The Individualized Funding Coalition for Ontario today released a new study on the role of individualized funding in Ontario. Moving Toward Citizenship is a comprehensive study of how four projects across Ontario are providing supports to people with disabilities in a unique and personalized fashion. Researchers studied 130 individuals and their families who receive individualized funding for their support needs. Individualized funding is based on a support plan developed by the person and their network. It allows individuals and their families to then personalize who they hire to assist them and what they want workers to do.

“We are very excited about this new study,” said Michelle Friesen, co-chair of the Individualized Funding Coalition for Ontario, the group that commissioned the study. “The study deepens our understanding of the benefits and potential of individualized funding,” said Friesen. In addition to the personalized approach, Friesen stressed that one key finding is the research showing the important role of independent facilitators in assisting people to build a life in community. This study also showed that the vast majority of people had very positive quality of life outcomes over four years.

Principal Investigator John Lord said that the study showed that families who use this innovative approach tend to be highly involved. “At all sites, we also found a deep commitment to citizenship and choice among staff and families,” said Lord.  In addition to strong values and organizational support, the researchers found that there were three things that were vital to the success of individualized funding; the facilitator that worked closely with individuals and their families, networks and relationships that assisted the person to live in the community, and effective workers that enabled people to build creative supports.
 
This study is part of a series of policy analysis papers that the Individualized Funding Coalition has been presenting over the last four years. Increasingly, this work is showing the importance of what some are calling “new paradigm approaches” to providing disability supports. More traditional approaches tend to focus on the placement of the person in a program or service. Peggy Hutchison, Professor at
Brock University and advisor on this new study, has researched new paradigm approaches across Canada. “This new study confirms that individualized funding must address the dreams and goals of people for all aspects of their lives in a holistic way,” said Hutchison. The study confirms that people want to build a good life in community.

Please click on title to read more about the research and to reach the link to the full report.

_______________________________________________________________________________________________________________________

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



April 18, 2006, evening: in Collingwood
Shirley Sutton OT offers a workshop on sensory integration strategies for parents and educators.
For more details, contact Laura Walton-Clouston by email at register-here@rogers.com or phone at 705-445-0695. Click for general information about Shirley's OT practice


April 24, 25, 26, 2006, in Niagara Falls

Autism Spectrum Disorders 2nd Annual Provincial Conference
Where Knowledge Takes Flight
Sheraton Fallsview Hotel and Conference Centre
Click on title for program and registration information.




April 27, 2006, 2-8pm, in Milton
Halton Showcase 2006: A Resource Fair for People with Disabilities
Find answers to these questions and others:
I want a job!  What options are  available  in my community?
Where do I find recreation programs ?
Living options:  supportive/Independent ?
How do I access services and supports ?
Click for more details



April 29, 2006, in London

Sexuality and Social Strategies for Children with Autism Spectrum Disorder
Susan Johnston, Behaviour Resource Facilitator.
Susan is a behaviour specialist and member of the Peel District School Board's multi-disciplinary ASD team. She is also a certified Crisis Prevention Intervention Instructor responsible for training and certifying Peel District School Board staff in the area of positive physical intervention when working the individuals with Autism. Click for flyer  For Registration Information Contact: Marianne Knox 519 352 7945
marianneknox@sympatico.ca


May 5-7, 2006, in Windsor
Achieving True Inclusion: Living Outside the Box

Family Alliance Ontario/Integration Action for Inclusion annual conference
Friday May 5 (evening), Saturday May 6 (all day) and Sunday May 7 (morning).
We welcome siblings, parents, whole families and friends.
For more information and to register online
, check the Family Alliance Ontario website.



Sunday, May 14, 2006, in Toronto at Mel Lastman Square
The National Alliance for Autism Research (NAAR) Canada and Autism Speaks present
The 2nd Annual Walk for Autism Research
More information can be obtained at http://canada.autismwalk.org or by calling 1-888-362-6227.


May 8, 2006, evening, in Brampton

Creative Housing and Support Options for Adults with ASD
Workshop offered by Kerry's Place Autism Services, with Bruce Kappel, Jim Preston, Glenn Rampton and Gail Jones. Click on title for details


May 12-14, 2006 (weekend) in Lanark County
Another Way of Being
Susan Barker offers a weekend retreat for parents of children with learning disabilities.
For more information, please click on title for more, and visit the
ontrackoptions website.


May 15-16, 2006, in Hamilton
Stages of Autism: Adolescence and Beyond
A major two-day conference in the Hamilton Convention Centre, featuring Dr Peter Szatmari and Dr Susan Bryson as keynote speakers, as well as numerous concurrent sessions on various topics relevant to teenagers and young adults with ASDs. Click for the program and to register
Please keep checking for updates.



May 24-28, 2006, in Chicago
Autism One 2006 Conference
Chicago Westin O'Hare Hotel
”The most comprehensive conference on autism ever assembled…
bringing together over 120 of the world's leading authorities.”

Five tracks to help you make the best decisions and most informed choices.
1. The Science of Autism & Biomedical Treatments
2. Behavior / Education / Communication Therapies

3. Complementary and Alternative Medicine
4. Adolescence and Adulthood

5. Government/Legal/Personal Issues
”We are pleased this year to be adding a track to specifically address adolescence and adulthood."
Click on title for more and to register.


June 26-30, 2006
Autism Network International presents AUTREAT 2006
Autreat is a retreat-style conference run by autistic people, for autistic people and our friends and families. It is an opportunity for autistic people and those with related developmental differences, our friends and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment.
Autreat focuses on positive living with autism, NOT on causes, cures, or ways to make us more normal. We have an exciting lineup of presentations on a variety of subjects of interest to the Autistic community, including communication, relationships, daily living aids, travel, effects of prejudice, and more. Autreat has been approved to offer Continuing Education Units through the Center on Human Policy at Syracuse University.
Autreat 2006 will take place on June 26-30 at a small university campus in the Philadelphia, Pennsylvania, area. The campus has plenty of open space for walking, recreation, and enjoying the outdoors. Lodging is in a residence hall with two to four people per room. Registration includes a supervised activity program for children and teens under 18. For fee information, registration form, a list of workshops, and further autreat information, check out ANI's website at: http://www.ani.ac


SPECIAL EARLY ANNOUNCEMENTS

Monday 18 September 2006, in Cambridge UK

The Autism Research Centre (ARC) at the University of Cambridge announces its

First Autism Research Conference at West Road Concert Hall, Cambridge.

Features include keynote speakers, poster presentations and an autism publishers' fair. 

Calling all artists and musicians. As part of the conference, there will also be a music concert and an exhibition of art by people on the autistic spectrum, taking place on Sunday 17 September 2006 at the same venue. Artwork will be auctioned on the day and proceeds will be divided equally between the artists and autism research. Profits from the concert will also be donated to autism research. The ARC is calling for artists and musicians who would like to get involved in the celebrations and perform or exhibit on the day. They welcome applications from people with autism spectrum conditions (or their carers on their behalf) who would like to be considered as performers in the concert, or have their artwork exhibited. For further information about the conference, art exhibition and concert visit: www.arc-conference.com



October 25, 26, 27, 2006, in Metro
Toronto Convention Centre

Autism 2006 - Geneva Centre for Autism International Symposium

Complete program now available on our website.

Go to www.autism.net now to view this year's exciting conference program
including speakers from around the world.

The comprehensive agenda includes presentations on the latest intervention and research in autism and neurology, biomedical interventions, positive behavioural intervention, communication, social skills, sensory processing disorders, anger management, adolescents, adults/employment, first hand accounts, Aspergerís disorder, cognitive behaviour therapy, intensive behavioural intervention, OCD and much more. 

Don't miss this international exhibit hall, art gallery and remarkable opening ceremony featuring the talents of gifted individuals with ASD.


30 October-November 2, 2006, in Cape Town, South Africa
World Congress on Autism "Autism Safari - Exploring New Territories"
Please keep visiting website for updates


_____________________________________________________________________________________________________________

BOOKS, WEBSITES AND OTHER RESOURCES

Send in the Idiots
Or How We Grew to Understand the World

by Kamran Nazeer.
Bloomsbury Publishing 2006. ISBN 9780747579106

"A remarkable, elegantly written portrait of four autistic men and women, and what their struggles and triumphs reveal about this baffling condition and about us all.

In 1982, when he was four years old, Kamran Nazeer was enrolled in a small school in New York City alongside a dozen other children diagnosed with autism. Calling themselves the Idiots, these kids received care that was at the cutting edge of developmental psychology. Twenty-three years later, the school no longer exists.
"Send in the Idiots is the always candid, often surprising and ultimately moving investigation into what happened to those children. Now a policy adviser in Westminster, Kamran decides to visit four of his old classmates to find out the kind of lives that they are living now, how much they’ve been able to overcome—and what remains missing. A speechwriter unable to make eye contact; a messenger who gets upset if anyone touches his bicycle; a depressive suicide victim; and a computer engineer who communicates difficult emotions through the use of hand puppets: these four classmates reveal an astonishing, thought-provoking spectrum of behaviour.
"Bringing to life the texture of autistic lives and the pressures and limitations that the condition presents, Kamran also relates the ways in which those can be eased over time, and with the right treatment. Using his own experiences to examine such topics as the difficulties of language, conversation as performance and the politics of civility, Send in the Idiots is also a rare and provocative exploration of the way that people—all people—learn to think and feel. Written with unmatched insight and striking personal testimony, Kamran Nazeer’s account is a stunning, invaluable and utterly unique contribution to the literature of what makes us human."

Kitchener Public Library's Autism Collection
Kitchener Public Library established an Autism Collection in 1993, with generous support from Waterloo-Wellington Autism Services. Read this update about the Autism Collection
Click on the following URL "hot key" to reach a listing in title order of all the books, videos etc in KPL's remarkable Autism Collection. Search KPL Autism Collection
You can then use the Sort/Limit button on the top of the page to narrow down to what they are really looking for – for example the author’s name, or the date order - so all the new
items
come to the top, or limit to video or DVD, etc.

_______________________________________________________________________


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


 


{return to the OAARSN Bulletin Board}