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
3 May 2004

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We welcome the important meeting in Guelph this week:

Wednesday May 5, 2004, 10:30 am - 2:30 pm, in Guelph:
SUPPORTING ADULTS WITH AUTISM SPECTRUM DISORDER
Autism Society Ontario is hosting this important meeting--an initial dialogue, to discuss areas of mutual interest in supporting adults with ASD and their families and to determine how we might give voice to those interests in Ontario. The intent is to promote, develop and enhance services for adults with ASD.
Where: Italian Canadian Club, 135 Ferguson St., Guelph, Ontario
Cost: $20 per person (to be collected on site). Lunch included

Contact pgallin.aso@sympatico.ca
Click for flyer with registration form.
Click for update, directions and links to background material

OAARSN will be reporting on the meeting.
If you can't attend, you might consider
thinking about the following, and let us know....

What Are Your Priorities?

As a person on the autism spectrum, or a parent, caregiver or close friend speaking for her/him: What are your greatest needs for your adult years?

    * Friends who care and spend time with me
    * Opportunities to continue learning
    * Opportunities to work for pay
    * Opportunities to work as a volunteer
    * A different kind of home from what I have now
    * Ways to stay in my present home
    * Ways to co-ordinate all the supports in my life
    * Expert consultation about:
    * communication
    * social skills
    * physical health (including diet, sensory system, sleep disorders, seizures, exercise)
    * anxiety and depression
    * job training and support
    * financial and legal planning

What else?

Generally, thinking of others beside yourself/your focus person: What supports and services should autism support groups and organizations provide or advocate?

     * Increase the disability pension (ODSP)
    * Social housing funds and housing trusts
    * Help forming personal social networks
    * Help with individualized planning and funding
    * Help recruiting friends and volunteers
    * Information for adults with ASD
    * Information and support for parents/siblings
    * Information and support for workers
    * Access to more health and education services

What else?

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AUTISM IN THE NEWS

Canadian News

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.

KidsAbility faces crisis
Seven therapists face layoffs, are 450 kids would lose services as a result of a funding freeze three years ago by the provincial government. This story is about the Waterloo-based agency that has a professional staff of close to 200, 300 volunteers, sites in Waterloo, Cambridge, Guelph and Fergus and supports about 3,250 children with special needs. The other 18 Childen's Treatment Centres in Ontario face similar crises. 

General Autism News

Language Center of Brain Shifts with Age
From childhood until about age 25, language capacity in right-handers grows stronger in the left hemisphere of the brain. This phenomenon is usually converse to a person’s “handedness”, where a right-handed person holds language in the left hemisphere, and vice versa. Using functional magnetic resonance imaging (fMRI) researchers have now shown that after about age 25, language capacity “evens out” somewhat, with older adults using more of both hemispheres relative to language skills. A research report from the University of Cincinnati.

Autism Research Agenda of NIH in US

Answer But No Cure for a Social Disorder that affects Many
Story in the New York Times about Steven Miller, a university librarian, who came across an article about a set of neurological conditions he had never heard of called autistic spectrum disorder. "This is me," he found. "Because Asperger's was not widely identified until recently, thousands of adults ... are only now stumbling across a neurological explanation for their lifelong struggles with ordinary human contact. "

Autistics Need Acceptance, Not Cure
In the Wisconsin State Journal,
Morton Ann Gernsbacher argues against the descriptions of autism as a "devastating scourge", worse "than Sept. 11 and AIDS combined" or "worse than cancer." Articles like this one have prompted hostile responses from supporters of ABA (Applied Behavior Analysis) as a "medically necessary" treatment for all children with autism.

Through Different Eyes:
How People with Autism Experience the World
A paper written by a student in a course at Bryn Mawr College, reflecting that student's research and thoughts at the time the paper was written. It has been posted to encourage others to learn about and think through subjects of interest.


Asperger's sufferer due to be released from Broadmoor (UK)
Pierre Boluc (28) held at Broadmoor Hospital for the criminally insane since he was 19, despite having no mental illness and no convictions has finally been earmarked for release following a campaign by The Sunday Telegraph.


Why Don't We Call Them Quirky?
As more and more kids live with labels, diagnoses and disorders, a growing number of experts are beginning to use antiquated terms like 'eccentric' and 'odd'.

ABC's Primetime Show Called Yellow Journalism at its Worst
SafeMinds, America's leading scientific organization investigating the risks that mercury-containing medical products pose to our children-is outraged by the biased comments in the story "Out of Darkness."

Disabilities disappear in outsider artists' studio
A good story from Cincinnati about the project called Visionaries and Voices that includes about two dozen artists who come to the studio on a regular basis -- and about 50 more who've gotten help marketing their work.

Autism Pioneer looked for children's strengths
A story about the
Linwood Children's Center begun by Jeanne Simons in 1955 in Ellicott City.

Get Out and Do a Good Deed
A new essay by Temple Grandin

Therapeutic Potential of Melatonin: A Review of the Science
Medscape; you may have to log-in or register.

Ergonomics Helps Autistic Children
A research team comprising an ergonomist, autism expert and interactive design and media artists, are using ergonomics to design an interactive, polysensory environment for children with ASD (autistic spectrum disorders) to meet the youngsters’ needs in a way that can be tailorable to specific needs.

Mother, police officer lauded for non-verbal card program
A good story from the Philadelphia area about a "Silent No More" communication board devised to help police officers respond to people who have difficulties articulating their needs.

Setting a standard for friendship
John Olive, 18-year-old with autism, walked 18 holes alongside his favorite athlete in the world, Chi Chi Rodriguez, while carrying the standard, a sign showing player names and scores, at the Bruno's Memorial Classic.


Words and Images about Autism: New Books and Movies

Passport to Another World
When he was three, her eldest son was found to be autistic; when her next son was four so, too, was he. Two very different boys, same diagnosis. Rather than devastated, Charlotte Moore felt relieved: she knew what was she up against, now she could deal with itAn edited extract from George And Sam: Autism In The Family, by Charlotte Moore, to be published on May 27 by Viking.

Not Even Wrong: Adventures in Autism, by Paul Collins. Bloomsbury 245 pp. $24.95
Washington Post
review of a "striking book about the nature of autism and what it's like to be the father of an autistic son."

Mozart and the Whale
The movie about Jerry and Mary Newport's love story has completed shooting and is now scheduled for a December release.

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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

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Spring 2004 series of workshops by Planned Lifetime Networks

PLANNING FOR GOOD LIVES NOW!
Saturday Mornings: 9:30 am12:00 noon in the Potter’s Room
St Andrew's Presbyterian Church at Weber and Queen in Kitchener
Corner of Queen and Weber (parking lot north of building)
Click for more information and how to register

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May 6-8, 2004, in Perth Ontario
'Music Therapy in the Spirit of Community'
The Canadian Association for Music Therapy hosts its 30th annual conference
Click for information about the conference and registration materials 
 

Saturday, May 8, 2004, in Kitchener, 9:30 to noon
Planned Lifetime Networks Spring 2004 Workshop series
Planning for Individualized Funding
Jan Burke-Gaffney will help us understand the essentials of individualized funding and why it is important to ensure a good life for our relatives.
Click for more information and how to register


Saturday, May 15, 2004, in Kitchener, 9:30 to noon
Planned Lifetime Networks Spring 2004 Workshop series

Planning for After We’re Gone
Elizabeth Bloomfield will explain how to use Microboards, known in Ontario as Aroha, to create a legal entity that can administer funds and manage services on behalf of your relative after your death or inability.

Click for more information and how to register


May 27 – 30, 2004, in Chicago
Autism One 2004 Conference "the Most Comprehensive Conference on Autism Ever Assembled" 
Click for more information
Click on website
 

May 31, 7 – 9 pm in Fergus by Kerry's Place Autism Services. 
Workshop: Introduction to Autism Spectrum Disorder
For more information, or to register, please call J. Timmins @ 519-763-5812.
Click for full information on Kerry's Place events in Guelph-Wellington
 

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. 

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ANNOUNCEMENTS OF SPECIAL PROJECTS


Farm Community for Persons with Autism Spectrum Disorders?
See report of a good interest meeting in late April, with background information.
General discussion is invited. Click to link to Yahoo! discussion group ASDFarmCommunity


The Autistic Adult Picture Project
is an effort to introduce Autistic Adults to a world that seems to think that all autistics are children,
If you are 18 years of age or older and on the Autism Spectrum, you are invited to join the Canadian-based "A2P2" website at http://www.isn.net/~jypsy/AuSpin/a2p2.htm

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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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

The Future of Adult Services : Managing New Directions in Uncertain Times
a series of teleconferences organized by TASH
* Creating High Energy Organizational Culture -Thursday, May 20th 
* Out-Maneuvering the System - Thursday, May 27th
* Using Self-Determination Tools to Achieve Flexible Supports - Tuesday, June 1st
* CMS's Independence Plus Initiative - Tuesday June 8th
* Recapturing Person Center Plans Thursday, June 10th 
* Building Meaningful Daytimes - Tuesday, June 15th 
* The Real Challenges of Individualized Supports - Wednesday, June 16th
* Paying Customers Are Not Enough - Tuesday, June 22nd 
These exciting sessions take place over the telephone! You can call in from home, work, or on the road! Only one telephone line may dial in per registrant. You can register as an individual or as a site. If you register as a site and have access to a speakerphone, or have the ability to do internal conferencing, you may have as many participants as you would like listening to the session, and you will also receive an audiotape of the session as well! If you are interested in a topic but cannot participate at the scheduled time, just register anyway and dial in to listen to a replay of the session at your convenience!
The topics are listed below. For more complete information, including registration rates, please visit : http://www.tash.org/teleconferences/index.htm
For additional information please contact TASH
29 W. Susquehanna Ave, Suite 210
Baltimore, MD 21204
410-828-8274 x 103
Fax: 410-828-6706
www.tash.org
 

Breaking The Barriers is now officially online!
A declaration with and for people who are often misperceived as being incompetent or less able because they do not speak. The vision: That all people with disability labels, who do not communicate through speech, have means of communication which allows their fullest participation in the world; that people can communicate using their chosen method; and that their communication is respected by others. And that Facilitated Communication will be accepted in practice and policy as a legitimate augmentative communication method. "We need support and help to clear away the barriers that make it hard or impossible for us to communicate and to actively participate in decision-making and public policy that affects our lives. We want to work collaboratively with other advocates to gain support for the right to communicate."

Sign on to the: RESOLUTION ON THE RIGHT TO COMMUNICATE
 

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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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