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
26 April 2004

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Please note two important meetings in Guelph with a focus on adults with ASD during the next ten days, notably:


Monday, 26 April, 7-9 pm, in Guelph, sponsored by ASO's Wellington chapter
A FARM COMMUNITY AS FOCUS FOR PERSONS AND FAMILIES WITH AUTISM?

Interest meeting on Monday, 26 April 2004, 7-9 pm at Guelph’s West End Zehrs

Click for draft vision


Wednesday May 5, 2004, 10:30 am - 2:30 pm, in Guelph, sponsored by Autism Society Ontario:
SUPPORTING ADULTS WITH AUTISM SPECTRUM DISORDER

RSVP by April 28, 2004 to pgallin.aso@sympatico.ca
Click for flyer with registration form.
Click for update, directions and links to background material

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AUTISM IN THE NEWS

Canadian News

Innovative Video-Conferencing Service
Ontario's Liberal Government has announced a pilot project to improve access to health and clinical services for developmentally disabled adults in 46 remote communities of the province's northwest.


Toonie for Autism Day 2004

Information from the Autism Society Ontario.
Also visit the main page of the ASO website for information about various scholarships and awards.


General Autism News

Words and Images about Autism: New Books and Movies

A Boy Beyond Reach
Doctors told brain specialist Cheri Florance that her son was autistic, but she believed they were wrong. She tells Penny Wark how she risked her the family’s happiness in a successful battle to turn her deaf, mute and uncontrollable little boy into a happy, healthy and normal teenager.


Dr Jean Ayres' letters to a learning-disabled nephew
Dr A. Jean Ayres (1920 - 1988) is the pioneer who, beginning in the 1950s, formulated the theory of sensory integration. Therapy based upon her theory is now applied worldwide by occupational therapists, physical therapists, speech language pathologists, psychologists, and physicians to treat children and adults with learning disabilities, autism, ADD, ADHD, and other manifestations of sensory processing disorders, such as hypersensitivity to touch, taste, and odors, and fear of heights and movement. In the midst of her most productive decade of work, the 1970s, Dr Ayres found time to write letters to her learning-disabled nephew, Philip Erwin, describing why his brain functioned as it did and how he was benefiting from therapy. These recently uncovered letters, as well as Erwin?s recollections of what life felt like before, during, and after therapy, are captured in a new book entitled, Love, Jean: Inspiration for Families Living With Dysfunction of Sensory Integration (Crestport Press; $15.95).

Visit the AutismArts website

"The United State of Leland"
Families and advocates of people who have autism are raising concerns about the movie which opened across the U.S. and Canada on Friday, April 9. Some are calling for a boycott, and have even phoned local theaters to ask them to not show the film. According to the movie's website, the film looks into the reasons why a teenager (Leland) murders his girlfriend's brother, who is described as "autistic". Some who have seen the film, which opened in a few large cities last Friday, say the movie suggests that the main character kills the boy as an "act of kindness" because he "is better off dead". The flyer from the Loew's theater chain reportedly refers to the murder as "emotional euthanasia". A group of parents and advocates have started an online petition to protest the film and the message they claim justifies violence against people with disabilities. "This disturbs all of us because at a time when we are fighting for the rights of our children it is unnecessary and damaging to our cause/convictions to portray our children as helpless victims of an
illness in which death becomes a welcomed 'euthanasia' for the child," the petition reads. "We are afraid that there willing be negative
repercussions as a result of the inaccurate portrayal of an autistic person's value in today's society. Violence and discrimination of the
disabled needs to stop and this movie does nothing more than promote it." The movie's website includes a discussion forum where readers can read other opinions and post their own.

Related: Boycott the movie "United States of Leland" (Online Petition) http://www.gopetition.com/sign.php?currentregion=237&petid=1390 "United States of Leland" (Paramount Classics)
http://www.paramountclassics.com/leland/main.html (Click on the "Post your opinion. . . " button for the discussion forum)
For a review of the movie that is fairly informative, go to this URL: http://www.orbitalreviews.com/pages/movie/Leland.shtml


Other Autism News

Annapolis Center for Science-Based Public Policy has Released Latest Report, 'AUTISM: The Myths and the Realities'
Press release with links to the report. Key points include:
-- Autism is a profound, pervasive, life-long developmental disorder for which there is no known cure affecting an individual's ability to communicate, to interact with other people, and to maintain ordinary contact with the world outside. It is more appropriate to speak of autism spectrum disorders because the signs and symptoms of this illness can be manifested in varying degrees of severity and expression.

-- Autism is a much more complex biological phenomenon than earlier understood; clinicians must consider these associations when diagnosing a patient and include any such finds in the treatment plans. The treatment should consist of a well- integrated, evidence-based, comprehensive approach based on all the latest research and clinical data. It is important to understand that the majority of individuals with autism spectrum disorder can be helped.

-- The incidence of autism spectrum disorders appears to be on the rise. The time to act is now before society is faced with a serious problem with tragic human costs and extraordinary social and economic consequences. There needs to be greater government support for both basic and applied research and more involvement in ensuring that those that are affected today (and their families) have access to the best possible care.


Intensive Therapy Widely Used for Autism

Report of ABC's Prime Time program on April 22.



Through the eyes of autism
Visual distortions could be the cause of autistic symptoms, according to an American expert. And a simple treatment with vitamin A might be the answer. Dr Mary Megson, a professor of paediatrics at the Medical College of Virginia, has evidence that treating these children with the right sort of vitamin A is not only highly effective but provides valuable new insights into some of the most puzzling symptoms of this disorder.

How having his own computer has helped Justin (13) who has autism and does not speak

"Rain Man" shines
A story about Kim Peek (52), one of the inspirations for the famous movie.

ASA joins with
Yanni Drummer Charlie Adams
to help with autism awareness
The Autism Society of America (ASA) is the oldest and largest grassroots organization within the autism community

Welcoming is key to special-needs ministry

A story about how Texas Baptists make persons with special needs feel accepted at church.


Pennsylvania farm project for autistic adults
SAFE (Supporting Autism and Families Everywhere) is developing New Hope Farm above the Susquehanna River. Through a residence for adults, respite for younger children, a classroom and specifically trained staff, SAFE will extend services to educators, aides, professionals, providers, agencies and families. "These are highly specialized proven services and therapies that are locally available, but not for older children and adults. ...Currently, these services, if available, involve great expense and travel to obtain."


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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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Monday, 26 April, 7-9 pm, in Guelph
A FARM COMMUNITY AS A FOCUS FOR PERSONS AND FAMILIES WITH AUTISM?
Interest meeting on
Monday, 26 April 2004, 7-9 pm at Guelph’s West End Zehrs, at the corner of Imperial and Paisley Roads, in the Community Room upstairs. We will show a video about Bittersweet Farms, exemplary farm community for adults with autism in Northwest Ohio, and discuss the possibilities for a farm community in our Waterloo-Wellington region.
Click for draft vision
RSVP (519) 823-9232 or gbloomfi@uoguelph.ca


April 30 -
May 2, 2004, at Gananoque
The Art of Advocacy: Every Parent is an Advocate
FAO/IAI Annual Conference
Key Note Speaker:  Judy Finlay on "Why a strong family Voice is Essential to Advocacy in
Ontario."  Click for full details
Read a story in Family Net


May 1, 2004
, 9-12 noon, in Guelph
Kerry's Place Autism Services sponsors a workshop:
Understanding the IPRC/IEP Process and Effective Advocating,
with guest speaker Lindsay Moir of
London.
In the Boardroom of the Canadian Mental Health Assocation,
Orchard Park Office Centre, 5420 Hwy 6 North, RR 5
Guelph
T
here is a cost of $10 per person.
Click for full information on Kerry's Place events in Guelph-Wellington
To register please call J. Timmins @ 519-763-5812. 


Saturday, May 1, 2004
, in Kitchener, 9:30 to noon
Planned Lifetime Networks Spring 2004 Workshop series
Planning for Our Wills 
Peter Brennan of Amy, Appleby and Brennan law firm will bring us information about Henson trusts, Comfort trusts, the impact of ODSP and so on to help us plan good wills.

Click for more information and how to register


Wednesday May 5, 2004, 10:30- 2:30pm, in Guelph

SUPPORTING ADULTS WITH AUTISM SPECTRUM DISORDER
Calling adult service providers in Ontario, key volunteers, individuals and/or advocacy groups with an interest in adult autism issues. 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
RSVP by April 28, 2004 to pgallin.aso@sympatico.ca
Click for flyer with registration form.
Click for update, directions and links to background material


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 from mid-April for conference details and registration information 

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ANNOUNCEMENTS OF SPECIAL PROJECTS

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

"All appropriate submitted photos will be cropped for a "head and shoulders" picture for the main Picture page and your original photo will be linked to that cropped photo with your biographical information. Click on some of the photos already there to see the format we will be using on the page. We don't want shoe sizes or social security numbers...Be careful with what you say about yourself. No personal, biographical, information is necessary, not even your real name.

Send photos (or even photo-realistic drawings/paintings) to autistry@yahoo.com
* 150 ppi is a good resolution, we'll try to use what you have.
* A snapshot about 5x6 inches is good.
* If you are prominent in the snapshot that is best; if you are being your autistic self, that is the very best.

Please send this information with your photo.
(*nothing* is mandatory, unanswered sections will be left off your page.)
* Name (first and/or last, pseudonym, nickname):
* Interests, hobbies, obsessions, etc:
* Year of birth:
* Profession, area of study, etc:
* Where you live in the world:
* Marital status, # of kids etc.:
* Personal webpage url:
* Comments:
All submissions copyright the respective authors.

Join the Autistic Adult Picture Project
http://www.isn.net/~jypsy/AuSpin/joina2p2.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
 

HELPFUL RESOURCES

Mind Reading
is a unique reference work covering the entire spectrum of human emotions. Using the software you can explore over 400 emotions, seeing and hearing each one performed by six different people. Mind Reading is for everyone interested in emotions. It has been designed with awareness of the special needs of children and adults who have difficulties recognising emotional expression in others. It is also an invaluable resource for actors, directors, writers and anyone involved in the dramatic arts. The title enables the user to study emotions and to learn the meanings of facial expressions and tone of voice, drawing on a comprehensive underlying audio-visual and text database.  Published by Jessica Kingsley


Let the Funding Follow the Children: A Solution for Special Education in Ontario
Click for description of this publication by the Fraser Institute

Click for a PDF version of the full publicaiton

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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 

 		Friendship

Please, give me a pathway that leads onto heaven;
O, give me a faith that I'll always defend,
And give me a hope that no evil will conquer,
But most of all, give me a friend...

A friend who is full of much hope and desire
To live in a peaceful, bright land,
Where war is not known and there is no destruction
By anyone's envious hand....

A friend that I can trust with dignified honour,
A friend who is deeply sincere,
With whom everytime I may share my own feelings,
Of fellowship, sorrow, or fear.

This friend will be mine for so many long seasons;
I'll help him the most and defend
The fellowship, trust, and sincerity of him:
My foremost and worthiest friend.

-Brian Henson ©1965
 
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A View of the Horizon

Although the sun is out today
As west winds come from far away,
I think I'll go down to the bay
To see a far horizon.

The sky is clear; the wind is light;
E'en though it was quite cool last night,
But I need some of that deep light
From far away horizon.

The world's in turmoil in the news;
It gives one shivers, sweats, and blues,
But it all disappears with hues
From far away horizon.

There's much to do as time rolls on,
And though I felt the dew at dawn,
I still must set my eyes upon
The far away horizon.

As children play on distant beach,
And adults are in school to teach,
I find my eyes will yearn to reach
The far away horizon.

It matters not what age or race,
Nor gender, language, work, or pace,
I must prepare to now embrace
The far away horizon.

As sea meets sky, a bond is sewn
With ev'ry creature, ev'ry stone,
And I know that I'm not alone
Against the far horizon.

-Brian Henson ©2000


 


 
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