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 AUTISM NEWS BULLETIN
11 October 2004

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NEW CONTENT ON OAARSN SITE

Adult Autism Issues in Waterloo-Wellington
AAIWW Newsletter 27, October 2004,
by Guelph Services for the Autistic and Waterloo-Wellington Autism Services.
Contents include:
PATH: thoughts by Nancy Miles
Detailed announcements of
- Farm Community Workshop (November 1) and
- Creative Supports for Vulnerable Adults conference (April 29)
The Cave Dwellers by Brian Henson
FC Gatherings: note on meetings and poetry of adults who speak with Facilitated Communicating


Guelph Services for the Autistic &
Waterloo-Wellington Autism Services offer a
Facilitated Workshop on
Autism and Community
including discussion of ideas of a farm community and centre
of autism service and expertise.
Date and Time: Monday, November 1, 2004, 7– 9pm
Location: Ignatius Jesuit Centre/Orchard Park
(5420 Hwy 6 North, Guelph)
in the CMHA Boardroom
Facilitated by Bruce Kappel
Read more about  this idea and meeting at this site:
http://www.ont-autism.uoguelph.ca/FCC-vision-2004.html
also see http://groups.yahoo.com/group/ASDFarmCommunityandCentre/

If you have opportunities, please print our flyer and post it:

~Free to all interested~ But Pre-Registration Required by 25 October 2004
Please contact Elizabeth Bloomfield at ebloomfi@uoguelph.ca Or  (519) 823-9232


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Autism in the News

Autism Birth Cohort Study
A joint project of Columbia University and the Norwegian government, the broad-based epidemiological study uses new technology to identify how genetics, environment, and timing combine to cause autism.

California bans mercury-containing vaccines for pregnant women, kids
Pregnant women and children younger than 3 in
California will soon no longer receive vaccines containing more than a trace of mercury, under a law approved this week.

Researchers pinpoint genetic cause of Timothy syndrome
Timothy syndrome may also cause a form of autism in those affected, and there is the possibility that understanding more about the nature of these calcium channel defects could improve understanding of autism.... Calcium channels are pore-like proteins that nestle in cell membranes and control the flow of calcium into and out of the cell. Calcium is one of the most important signaling molecules in the body, and perturbing calcium transport can cause a wide range of disorders.

Auditory preference allows earlier autism diagnosis
Research at the Yale Developmental Disabilities Clinic promises to revolutionize physicians' approach to autism by providing an opportunity for earlier diagnosis of the disorder. Dr Ami Klin sums up the significance: "Children's preference for speech sounds as opposed to other sounds in their environment is one of their most important mechanisms of socialization... We knew that children with autism are born without this preferential attention. The trick was how to measure that. By being able to measure it, we can maximize the outcome of our treatment. The earlier we identify children with autism, the earlier we can provide treatment and the better the response that we will get."

NAS has put autism at the heart of politics in Scotland
The National Autistic Society Scotland (NAS Scotland), part of the UK's leading charity for people with autism, staged a fringe event at the Scottish National Party conference on Thursday 23 September at the Palace Hotel, Inverness.  'Autism: Myths and Reality' explored the truth about autism with a range of speakers.

Parents of kids with Asperger's falsely accused of abuse
Experts (including Simon Baron-Cohen) fear that some local authorities misrepresent outwardly odd behaviour and suspect parents of abuse. Schools and social services have been mis-recognising it and putting it down to bad parenting.

Hospital Autism Detention Wrong
The detention of a man with autism (who does not speak) under common law was a breach of his human rights, the European Court of Human Rights has ruled. The decision could have implications for people with dementia and learning disabilities who have been admitted to care under similar circumstances. Another story about implications of this ruling for 50,000 others

Alternative therapies: do they help the symptoms of autism?
Children’s Hospital of Pittsburgh researchers are conducting a first-of-its-kind study to measure the safety and effectiveness of several alternative therapies for young children with autism spectrum disorder– a supplement known as Omega-3 fatty acid; a special diet free of gluten and casein (wheat and milk proteins); and a diet which restricts sugar intake.

What About the Kids? Politicians are failing children, especially those with special needs
Article in Maclean's Magazine about Canadian parents' quest for justice in obtaining services for their children.
More than 100 lawsuits in the courts are currently filed by parents of autistic children.

Ontario Government press release on services for children with autism
"Taken together, these supports will go a long way toward removing barriers for children and youth with autism,” said Margaret Spoelstra, Executive Director of Autism Society Ontario and a member of the expert working group that helped shape the new programs. “These supports will also position Ontario to become a leader in this field, both nationally and internationally.”A "backgrounder" review of government programs for children with autism.

Catholic Women's League of Canada resolves to support persons with autism
On resolution by the New Brunswick Provincial Council, the 84th annual national convention decided to "encourage provincial councils to urge their provincial/territorial governments to address the needs of autistic persons by providing adequate funding for diagnosis, early intervention, treatment and family support systems."

Swing for the fences
"A new generation of people with disabilities is heading for the work force" begins a good story from the Houston Chronicle about Andrew Holton (22) with a form of autism and Tourette's syndrome.

Extreme home makeover features tracking devices
Story of tracking devices in a home being rebuilt for a family with an autistic child.

Golf's purest striker rarely missed a fairway

USA Today's memoir of Moe Norman of Kitchener, Ontario who died 4 September 2004 at 75. This article, unlike the Canadian obituaries, refers to the likely savant autism of the eccentric golfer, described as "a supernaturally gifted yet cruelly misunderstood athlete."

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

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

Only events in the next couple of weeks and new announcements (indicated by ** **) are listed here.
For more details or for other previously announced events, opportunities and projects that are still current,
please click on this calendar list



Friday, Oct 15-  8:30am.-3:30pm, in St Marys
David Hingsburger Conference
St. Marys  and Area Community Centre, James St. South, St. Marys
Lunch Provided. Cost $75
Hosted by Community Living St. Marys and Area
Contact Brenda Kaiser @ 519-284-1400 ex. 224 or Marg Angus @ 519-284-1400 ex. 242


Saturday, October 23,
9 am - 4:30 pm, in St. Marys Friendship Centre
Home Sweet Home
One day workshop for people with disabilities, families and service providers to hear about unique and different ways people have created a home for themselves.
The first step is having a vision. While this is not a workshop about how to secure funding for individual support needs, it will open minds to what is possible in terms of how people can live.  Click for flyer, map and registration form


October 29 and November 26, in London

Suicide Recognition and Response
Workshops by J. Arthur Sheil


Monday, November 1, 7-9 pm, in Guelph
**Vision and Strategic Plan for a Farm Community &
Regional Centre for Autism Spectrum Disorder Expertise**

A workshop offered by Guelph Services for the Autistic and Waterloo-Wellington Autism Services and facilitated by Bruce Kappel. Free, but registration by October 25 necessary as space is limited. Click for flyer

Link to background information about this idea

Email GSA or leave message at phone 519-823-9232.


December 3-4, 2004, in Windsor
**Autism Awareness Centre Presents**
Jan Casali, Consultant to the Geneva Centre
Introduction to Developing Communication Skills For Verbal and Non-Verbal Individuals with ASD
Susan Aud Sonders, M.Ed, Author of Giggle Time
Giggle Time: Establishing the Social Connection
Hilton Windsor, 277 Riverside Dr. West, Windsor, Ontario
For more information and registration form
Please contact Wendy Benson at toll free 1-866-724-2224 or wendy.casdc@shaw.ca
or Vicki Harris at toll free 1-866-488-9497. Fax: (780) 477-8350 or (780)447-5445.
Website information at
www.autismawarenesscentre.com.


December 3 & 4, 2004, in
Seattle, Washington
Innovative Interventions in Autism/NVLD & Asperger’s Syndrome
– Practical Therapy for Home & School

*Margaret Bauman, MD – Pediatric Neurology – Harvard University Medical Center
*Rosemary White, OTR/L – Occupational Therapy – Private Practice – Seattle, WA
*Martha Burns, PhD – Speech Pathology – Northwestern University
*Jerry Newport – Author – Adult with Asperger’s
Additional Information:  Linda S. Neilson Ph.D, Continuing Education Program of America, cepa@dpc.net

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AUTISM WEBSITES, BOOKS AND OTHER RESOURCES

Closing The Gap Forums
A discussion board exploring the many ways that technology is being used to enhance the lives of people with special needs. Please feel free to participate in the discussions listed below and share this valuable resource with friends and colleagues. There is no fee. Visit:  http://www.closingthegap.com/forums and check out the "Featured Discussions".


Support Worker - Special Needs Headline News & Resources
The Supportworker Newsletter (from Skagway, Alaska) is a weekly review of news and views from across the web. Working with people with disabilities, psychiatric and/or behavior issues can be challenging. It is our goal to assist social service support workers to make more informed decisions and provide better care.

Enabling Families to Succeed: Community-Based Supports for Families. By Susan Pigott,
C.E.O. and Lidia Monaco, Director of Children, Youth and Family Services.
St. Christopher House, Toronto. Presented at Making Children Matter Conference, October 2004. Posted on the website of Voices for Children, "a registered charity dedicated to promoting the well-being of Ontario's young people. We disseminate knowledge and ideas to influence public awareness, policy and practice."

Food and Behavior Research website

Expression Master: a new resource for learning emotions and facial expressions
Mandeep Arneja, a Computer Science student of Carleton University, has developed a software program to help people with ASD to learn and practice understanding other people's facial expressions as keys to their emotions. Many people with ASD have difficulty understanding others' facial expressions.


The Expression Master program and all necessary software to run it are loaded on a CD.
The Interactive Tutorials, Emotions Library and Quiz Center focus on the six basic emotions of happy, sad, angry, surprised, disgusted and afraid. The print report explains the purposes of the project, surveys current literature and other software in this field, guides the user through the tutorials etc, and discusses ways the programs might be further developed.

Mandeep has asked OAARSN to announce Expression Master. We invite requests from those who are in positions to test the program with several people and thus to comment. Please say what number of people with ASD you work with and the age-group(s).
We'd like to try it with
a) preschool children?
b) primary-junior school age children
c) teenagers
d) young adults
It could be interesting to try the program on some "neurotypical" people as well.
Please send your request to
OAARSN

Kitchener Public Library's Autism Collection
"Hot key"
Click on this URL to reach a listing in title order of all the books, videos etc in KPL's remarkable Autism Collection. Search KPL Autism Collection
If you are searching for a specific author you'll have to search the entire KPL collection.
This is a Shortcut to Search by Author

Ann Celestine, KPL's Heatlh Librarian is offering a hands-on internet searching session about once a month at the Library. The next one is scheduled for Wednesday November 17 at 7:00 - 8:30) and entitled “Finding Reliable Health Information on the Internet”. Ann could organize such a session specifically for guidance to KPL's Autism Collection resources, if there is enough interest.


Planning for Success: Adolescence to Adulthood
A publication of Erinoak (118 pages, August 2004) available as an online document in pdf format.
Sections include:
Planning for the future;
Erinoak services;
Common issues of adolescence;
Frequently requested information about funding for children 12-18;
Frequently requested inforamion about adult services (applying for ODSP, borrowing equipment, help with renovations,help with personal care and activities of daily living, job training and other employment supports, options and information for independent living, day programs for those who have left secondary school, recreation and leisure, funding for respite, post-secondary services, scholarships and bursaries, accessible transportation.
Appendices include sources of funding, taxation and rebate information, respite services, important contacts and resources, planning for success--template and checklist, and resource websites, and an evaluation form.
Pages 98-100 list "Resources for persons with autism".

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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

Persons with Disabilities Online
A Government of Canada site "where persons with disabilities, their family members, caregivers and service providers can access a full range of information on disability-related programs and services in Canada." Our search turned up nearly 8000 references to "autism."

A model for political advocacy?

In Britain, a Manifesto for Autism has been launched as a blueprint for educational, health and welfare provision over the next ten years. Published by APPGA (the All Party Parliamentary Group on Autism) the Manifesto sets out four general principles and eleven specific objectives to deliver better services and support for people with autism, to be achieved in the next ten years. The group believes that "agencies have a responsibility to work together to make a reality of social inclusion and person-centred planning for people with autism spectrum disorders" and will work to ensure that its vision is carried out by 2013.
Among its specific objectives are provision of: multi-agency diagnostic and assessment teams in every local area; appropriate early intervention programmes; training for all professionals and auxiliary staff in autism awareness; an entitlement for families to respite for a minimum of four weeks a year; access to leisure facilities and ‘meaningful’ activities and, for adults, support to find employment. There is also a pledge to make autism explicitly designated for a range of disability benefits and welfare support. Read the Manifesto

Petition to Defend the Dignity of Autistic Citizens
Are you fed up with autistic citizens being likened to animals?
We urge all concerned individuals to add your name to this petition.
Read the background and see who else has signed
To sign, please email anima@neurodiversity.com


Ontario Coalition for Long Term Care Reform
Consisting of over 30 seniors’ advocacy, disability rights, and service provider organizations, as well as individual and systemic advocates, policy analysts, academics, and lawyers, the Coalition believes "in the worth and dignity of every person, irrespective of age, health status, or disability. Our vision is the creation of a long term care system that encourages the empowerment of individuals and families, through choices, involvement, and the promotion of interdependence and self-determination. We envision a greatly strengthened and expanded not-for-profit community services sector, individualized funding, and the building of both formal and informal supports to ensure that individuals remain in their own homes, neighborhoods, and communities throughout their lifetimes.

"The
Mission of the Ontario Coalition for Long Term Care Reform is to promote public policy that strengthens all individuals’ abilities to remain full and contributing citizens throughout their lifetimes, while valuing their worth as individuals.  Our intent is to pursue advocacy strategies that will lead to a long term care system that is increasingly based on principles of not-for-profit services delivery and that stresses interventions that defer, or avoid entirely, the need for institutionalization of any kind."

The Coalition is actively advocating with the Ontario Government to realize this vision. Contact the Coalition for more information and sample advocacy letters.
Ontario Coalition for Long Term Care Reform
P.O Box 11013
97 Guildwood Parkway
Toronto, ON.
M1E 5G5
Fax: 416 261-0264


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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 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


Mark Heinmiller's Personal Profile
At a recent Guelph workshop, Mark shared insights of living with Asperger’s Syndrome. Mark has kindly allowed us to post this profile, and adds that he has just found a full-time one-year position doing research for a law firm in downtown Toronto.


The Bridge from the Island to the Mainland


Andrew, an autistic man who who does not speak but uses FC to express his thoughts, has said:
"FC is my bridge to the world. Before FC, I had to hope others would see in my eyes and behaviour but these were not reliable. I saw that nobody really knew how smart I was but I had no way to express myself. It felt like I was observing my own life but not controlling it. I was sad and at times frustrated if I needed to say something....  I’m thinking that the bridge took me from the island to the mainland..... I think I am visiting the mainland, not living there. I don't really want to live all the time on the mainland. I think visiting is fine."

Hearing of this image of autism as an island for a severely handicapped person with autism, Brian Henson, a poet and columnist who is also on the autism spectrum, composed the following poem for Andrew:

The Island

Way out, on the island,
'Tis but a retreat
Where water's the buffer
'Gainst both cold and the heat.
 
The mainland is distant,
But still within sight,
As others see island
In darkness and light.
 
The island is tiny;
A cabin is built,
But, due to the waters,
There's more than one stilt.
 
The owner is feeling
As sigh of relief,
As there is such stillness
On land and on reef.
 
The world and it's numbers
Is not to be heard;
As nature consumes one,
In thought and in word.
 
And when one must go
To the mainland for shops,
The pressure is there
>From the folks and the cops.
 
But back to the island
One whiffs in a breeze,
As there is no need to
Bow down on one's knees.
 
The life on the island
Is lacking a yield,
As each creature there
Is on one playing field.
 
The sun sets and rises
To declare each new day,
As the waves crest the island
And the fireflies play.
 
It's a sad day when one has
To leave isle for good,
As each part of the island
Is part of one's blood.
 
But the island will be there
In spirit and form,
Long after departure--
Beyond any storm.
 
Autism's the island,
Where many retreat
As they feel for being,
Away from the street...
 
          -Brian Henson©2004

  


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