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
1 June 2004

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AUTISM IN THE NEWS

Canadian News

Supreme Court Case on Access to Intensive Behavioral Treatment: Points of View
Canada’s Vaunted Health Care System Goes on Trial in Supreme Court of Canada
"On June 9-10 the Supreme Court of Canada will preside over whether government’s nearsighted bureaucrats have free hand to block desperately needed treatment for Canada’s children disabled by the devastating neurological condition of autism." This article's author describes autism as devastating and ABA-type treatment as "medically necessary," and refers to Science for Sale in the Autism Wars by Sabrina Freeman.

ABA-for-all Challenged by Autistic Adult with Intervener Status in Auton Case before the Supreme Court
Michelle Dawson of Montreal contends that efforts by parents and professionals to obtain public funding for intensive behavioural treatment may breach the human rights of people with autism in that decisions are made without any input by autisstic people themselves. In her submission, she points out
that claims for IBI (based on principles of ABA) as "medically necessary" present "a unified view of untreated autistic individuals...as hopeless, unable to communicate and to learn, and expensively doomed to isolation and institutionalization."


Autism Rally by 320 at Ontario's Queen's Park

Parents of children with autism from around the province gathered to raise awareness about the neurological developmental disorder and call on the government to do more.

Facing Off Against Autism
A University of Victoria cognitive neuroscientist has developed a computer game that may improve the face-processing abilities of children with autism by jumpstarting the area of the brain that recognizes faces.

Ontario--Becoming Accessible For All?
A Government press release about the Accessibility Ontario website. Details of grants to organizations of up to $5,000 are provided.


General Autism News

Vaccine-autism link denied
A CBC News report of the finding by The (US) Institute of Medicine's review of five large studies that that tracked thousands of children since 2001 and conclusion there is no association between autism and the measles, mump, rubella vaccine. Health Canada's position Many US advocacy organizations are not convinced that the definitive research has yet been done.


Imaging Study Shows Brain Maturing
The brain’s center of reasoning and problem solving is among the last to mature, a new study graphically reveals. 
Constructed from MRI scans of healthy children and teens, a time-lapse "movie", from which the images were extracted, compresses 15 years of brain development (ages 5 - 20) into just a few seconds. It shows gray matter – the working tissue of the brain’s cortex – diminishing in a back-to-front wave, likely reflecting the pruning of unused neuronal connections during the teen years. Cortex areas can be seen maturing at ages in which relevant cognitive and functional developmental milestones occur.Red indicates more gray matter, blue less gray matter. Gray matter wanes in a back-to-front wave as the brain matures and neural connections are pruned. Areas performing more basic functions mature earlier; areas for higher order functions mature later. The prefrontal cortex, which handles reasoning and other “executive” functions, emerged late in evolution and is among the last to mature. Studies in twins are showing that development of such late-maturing areas is less influenced by heredity than areas that mature earlier. The study provides a better picture of how the brain normally develops, against which to measure what happens in various neurodevelopmental disorders like schizophrenia and autism.

Empathy finding offers autism hope
Having empathy for other people is a much more simple and basic emotion than thought, scientists have found.

Michelangelo may have been autistic
A report, in the June 2004 edition of the British publication, the Journal of Medical Biography, published by the Royal Society of Medicine Press, presents a synthesis of new evidence about the famous 16th-century artist. "Michelangelo's single-minded work routine, unusual lifestyle, limited interests, poor social and communication skills, and various issues of life control appear to be features of high-functioning autism."

Many children with autism have outstanding musical ability
“A lot of work has been done on musical savants with exceptional musical memory and rarely found absolute pitch ability" says Dr Pamela Heaton. “But our research shows that even children without these special talents and no musical training can have highly developed musical ’splinter skills.' If we could develop effective non-verbal music teaching methods, we might be able to understand more about the way these children learn and process other information.”

Farm community for autistic adults
Full Spectrum Farms has begun service in western North Carolina, modelled on TEACCH and Bittersweet.

The world according to Gary
Gary (now 18) has benefited from 13 years at Struan House School, run by the Scottish Society for Autism and now want sto go to college.

Caring for Tim: Autistic man finds new home at 50
A moving story of how a man who had been cared for his father all his life copes and is supported after his father dies. Illustrated with powerful photos.

Film Festival focuses on the disabled
Of 20 films shown last weekend at the Sprout Film Festival at the New York University Cantor Film Center, four focused on autism. "The Autism Puzzle," a 2003 United Kingdom documentary, tells the history of autism and current research into its cause, treatment and prevalence. "Hillbilly Eyes" explores the world of a profoundly autistic boy who has most loved one thing, country music.

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ANNOUNCEMENTS OF EVENTS
See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

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

10 June 2004, in Marlborough, Massachusetts
Asperger Syndrome: Clinical Features, Assessment, and Intervention Guidelines
a symposium conducted by Dr Fred Volkmar, of the Yale Child Study Center

June 8, 6:30-8:30 pm, in Guelph
Adaptive Technologies in the Classroom 
Kerry’s Place hosts Lisa Allen of Global EText Inc.

Global EText Inc. is an adaptive technology company that provides products and services to support the needs of students, teachers and parents.
Boardroom of the CMHA at 5420 Hwy 6 North, RR#5 Guelph, Ontario (Orchard Park Office Centre/ formerly Ignatius College). Please call  the Kerry’s Place Resource Centre to register at 763-5812.


June 13 from noon-5pm
, in Toronto

Asperger Awareness Day at the Rex on Queen
This will be a great day of fabulous music (Jazz, Blues and Gospel), silent auction and most importantly Asperger awareness and community support. Please pass this notice on to everyone and anyone you can. The more that know the better.  If anyone has questions about the day, feel free to contact me by return email. As well, if anyone would like to donate merchandise or services to the silent auction or knows of businesses that we could contact for the same, please let me know.  Your support as always is greatly appreciated.
Click for publicity  Contact: 
Margot Nelles, President & CEO, Visit Aspergers Society of Ontario website or phone 416.651.4037

Friday, June 18, 2004, in Windsor
Autism Society Ontario will be presenting its
first Stacy Lynne McNeice Memorial Lecture Award to Dr Margaret Bauman

Margaret L. Bauman, M.D. is a Pediatric Neurologist, at MassGeneral Hospital, the Director of The Autism Research Foundation and LADDERS Clinic, and an Associate Professor of Neurology at Harvard Medical School. Dr Bauman will also be guest speaker for a workshop that day. Check the  ASO website for conference details and registration information.

Sunday, June 20, 2004, in Toronto
POST-SECONDARY STUDENTS WITH DISABILITIES ORGANIZE A CELEBRATORY MARCH FOR PEOPLE WITH DISABILITIES
Toronto's first annual "Simply People: Celebrating Our Lives and Our Identities"
The march from Dundas Square to Nathan Phillips Square, followed by speakers and performances. For more information, contact: Julia Munk, VP (Equity), Students' Administrative Council, University of Toronto

July 24, 2004, in
Toronto
Autism Canada Foundation presents:
Biomedical Interventions for Autism
The most advanced information for Physicians and Parents on Autism Biomedical Treatments

Morning - 9:30 a.m to 12:00 p.m.
The Gut/Brain/Diet Connection and The Specific Carbohydrate Diet
by Canadian Researcher and
Author Elaine Gottschall, B.A., MSc.
Afternoon - 1:00p.m.  – 4:30 p.m.
“State of the Art” Biological Recovery Strategies for Autism
by autism specialist Jeff Bradstreet, M.D. FAAFP
Alumni Hall Room 100, 121 St. Joseph Street, St. Michael’s College, University of Toronto  
$85.00 per person Payment by PAYPAL, Cheque (prior to July 4th), or Faxed Visa Form
Registration form available at www.autismcanada.org
$100.00 Cash at door (space permitting)
$3.00 surcharge will apply to creditcard and PAYPAL payments.
For info call:  Cynthia @ 905-331-4480  Fax: 905-331-4662


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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ANNOUNCEMENTS OF SPECIAL PROJECTS

An idea for a one-day conference on
CREATIVE LIVING SUPPORTS FOR VULNERABLE ADULTS

Creative living supports that are person-centred and family-based and invite and facilitate collaboration and community engagement:
- In Guelph in September-October 2004
- Keynote address integrating various elements
- Workshops on four areas: Supports for Individuals, Homes and Living Spaces, Work and Leisure, and Making Creative Options Work in Ontario.
- Poster sessions and brief presentations on a whole range of living supports from which persons and families may choose the particular mix that suits their situations and needs
- Informal connections and discussion
What do you think?
Whether this can be organized (by GSA in partnership with other organizations) depends on your response. Your perceptions are important. Please respond by email to gbloomfi@uoguelph.ca

OAARSN's Adult Autism Needs Survey has been revised after a pilot test period. We have also taken the opportunity to adapt the survey to new SNAP software. 

OAARSN is conducting this survey as a free public service. Private information about individuals will not shared with or passed on to any agency or researcher. If you ask to be connected to our ASPIRE project, you may authorize your personal data to be shared with the ASPIRE advocates. 

We offer two versions. It's important for everyone concerned with autism in adulthood to complete at least the short-form survey. 
1. The more detailed "long-form" survey takes about 25 minutes to complete. It has questions about abilities and challenges, treatments and therapies, quality of life, and planning for the future. This is for persons and families who are actively concerned to achieve the best possible quality of life in adulthood. Click for the full "long-form" AANS survey

2. The more basic short-form survey takes only 5 minutes to complete. It's helpful that planners, funders, advocates and agencies can be aware of the broad patterns of need. Click for the short-form survey

We hope you will respond online. However, if you prefer to complete and mail a paper survey, please request this by email: gbloomfi@uoguelph.ca
Click for more information about the surveys 

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BOOKS, WEBSITES AND OTHER RESOURCES


Silent No More: Communication Boards Available
Susan Rzucidlo, of Philadelphia developed this outstanding tool for law enforcement, fire rescue, EMT's and ER first
responders. The laminated board features 24 key communication situations. It utilizes picture icons and words and phrases in English and Spanish as a way for first responders to communicate with persons with autism and other cognitive conditions, as well as non English speakers. Contact Susan for details: Email
srz@dol.net Phone 610-274-2364
From Dennis Debbaudt's Autism Safety & Risk Newsletter Summer 2004


DOOR 2 Adulthood website prototype launched
An interactive site for Disability Ontario Online Resources, with this message
"We need feedback from youth, families and service providers about how the website works. We need to know what you like, what you don't like and what you want us to change."


Coffee table edition of ARTISM available
Information about the book of art by those with autism.


Carly Hatton, talented artist, was featured in Guelph's first Parent and Child Show this Saturday and Sunday (May 29/30).  Carly, a Grade 6 student, sold her artwork at the show.  For more information on Carly's art see www.carlysart.com

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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area

Canada Votes 2004 and so can all our adults aged 18 and over!

Call Elections Canada is 1 800 463 6868 to find the local number for your region
 
John Toft of Ottawa shares his research on how our adults with autism can be supported to exercise their citizenship rights. He  contacted Elections Canada by phone to ask what the specific procedures are for helping developmentally handicapped adults vote. There is no short answer.
If the adult is ill or physically unable to go to the polling station, then the vote may be cast by a special ballot. For this you have to contact the Returning Officer for the particular Riding as soon as possible.
For developmentally handicapped residents in group homes, you may contact the Returning Officer and arrange for a mobile ballot to be set up at the group home, a similar process to that at Retirement Residences.
For those unable to read or with reading difficulties, the Deputy Returning Officer, in the presence of the Polling Clerk can assist in the voting process.

A friend, relative, spouse or common law spouse may accompany the developmentally handicapped adult to the voting compartment after that
friend etc. has sworn an oath about the person and their handicap.
If the developmentally handicapped adult is not on the voting register, you can still get that person included by contacting the Returning Officer for the Riding and visiting that officer in person with certain I.D. items. Contact the Returning Officer to see exactly what is needed.
Elections Canada will provide contact phone numbers and addresses of Returning Officers. You can also identify the Polling Station and Riding through that contact.

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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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