ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
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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
25 October 2004

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LAST CALL.....
SPECIAL MEETING IN GUELPH

Guelph Services for the Autistic &
Waterloo-Wellington Autism Services offer a
Workshop on
Autism and Community
on Monday evening, 1 November 2004

Facilitated by Bruce Kappel
Includes ideas of a farm community and
centre
of autism service and expertise.

Wondering about the Autism and Community workshop??
What exactly is this "Farm Community and Centre" about?

Read about the ideas of this meeting
Also see our flyer and visit
http://groups.yahoo.com/group/ASDFarmCommunityandCentre/


Date and Time: Monday, November 1, 2004, 7– 9pm
Location: Ignatius Jesuit Centre/Orchard Park
5420 Hwy 6 North, Guelph
~Free to all interested~ But please pre-register by 27 October 2004
 Reply to ebloomfi@uoguelph.ca or (519) 823-9232


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Autism in the News

Autism challenges aired at conference
Helen Henderson in the Toronto Star looks forward to the 2004 Symposium organized by The Geneva Centre.

Terrifying gap' in provision for autistic adults

Jane Asher, the president of the National Autistic Society (UK), is warning that there is currently a "terrifying gap" in provision and support for autistic adults. Ms Asher has been involved with autistic charities for the last 22 years and stressed that although lack of provision exists for all sufferers, it is particularly strong in the adult sector. Speaking on BBC Radio Four's 'You and Yours', she raised concerns that autism sufferers are being neglected by authorities once they reach the age of adulthood, meaning they often have to fight to receive an adequate level of support.
Ms Asher added: "Even if you manage to take your local authority to tribunal because they're not giving you what is your right and even if you manage to win that case, still they sometimes don't give you what is your right," she said. "They just say, you won but we haven't got the money and that's it." The main area of provision that needs to be overhauled is education, so that autistic adults are given the key skills needed to enter the workforce.

Call for overhaul of autism services in Pennsylvania
'If you're a middle-age adult with autism in Pennsylvania, you could very well be slapped with a misdiagnosis of schizophrenia and be housed with other mentally ill patients. If your child isn't speaking as early as his peers, your pediatrician could very well shrug off the observation and say: "Oh, don't worry about it. Einstein didn't talk until he was 4....." Problems with diagnosis are only the beginning of difficulties for Pennsylvanians... State agencies are complex and frustrating to navigate, huge gaps exist in services and families are so isolated and stressed that many break up under the pressure....'
Does this sound familiar? Pennsylvania is doing something about it. The Autism Task Force, an advisory group established in July 2003, is about to release "a report that calls for a major overhaul of autism services. More than 250 researchers, health professionals, lawmakers, educators, employers, foundations and parents have contributed to the historic effort to build a cohesive program on all fronts." Read about the likely recommendations.

Gene for Joubert Syndrome with Excessive Brain Folds
Researchers at the University of California, San Diego (UCSD) School of Medicine have discovered the gene for a form of Joubert Syndrome, a condition present before birth that affects an area of the brain controlling balance and coordination in about 1 in 10,000 individuals. The AHI1 gene mutation is responsible for a form of Joubert Syndrome manifested by absence of part of the cerebellum, the part of the brain controlling balance, and by excessive folding in the cerebral cortex, the part of the brain controlling consciousness and thought. "Although Joubert Syndrome is relatively rare, we think that the genes causing this condition are going to underlie more common childhood brain and behavioral abnormalities, such as autism, mental retardation, and poor coordination.”

Woes of the Gluten-Intolerant

Why is a seemingly harmless protein so detrimental to some individuals?


Major Improvement Possible for Disabled People
People can gain substantial reversal of previous deficits of all types through increased blood flow to the damaged areas. Nobel Prize nominee, Dr. William Hammesfahr, has shared his protocol using medication and hyperbaric oxygen with the World Congress on Disability in Orlando. In 2000, this work resulted in approval for the first patent in history granted for the treatment of neurological diseases including coma, stroke, brain injury, cerebral palsy, hypoxic injuries and other neurovascular disorders with medications that restore blood flow to the brain. It was extended to treat successfully disabilities including ADD, ADHD, Dyslexia, Tourette's and Autism as well as behaviorally and emotionally disturbed children, seizures and severe migraines.

Autistic students granted a place apart
New Eugene program reaches out to kids who learn best from a distance. Path Finder is technically a program, but it has its own building, its own staff and its own, decidedly unordinary, student body of 12 most of whom have some form of autism.

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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

 
For more details or for other previously announced events, opportunities and projects that are still current,
please click on this calendar list



October-November 2004
ASO's Halton Chapter announces:
Fall 2004 Institute on Autism
Wednesday evening workshops on various important topics


October 28, 2004, 7-9pm, in Sarnia

Choosing my Future: Individualized Planning
presented by Charlotte Dingwall and Barbara Leavitt of St Marys
The Optimist Hall is on London Line which is not Lambton County 22
(used to be old Hwy 7) The hall is between Waterworks Road and Telfer Rd.
Click for flyer


October 29-31, 2004,
in Danvers, MA

The 10th annual Current Trends in Autism Conference
Featured speakers include: Temple Grandin, Ph.D., Deborah Fein, Ph.D., Rebecca Landa, Ph.D., Susan Bryson, Ph.D., and Margaret L. Bauman, M.D. Conference information/registration can be found at www.ladders.org


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 please register by October 27 as space is limited.
Click for flyer

Link to background information about this idea

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

November 4, 7-9pm
November 5, 8:30am-3:30pm
Coaching to Inclusion
Guest Speaker - Dr. Thomas Armstrong
Best Western Lamplighter Inn, London, ON
Details for Thursday, Nov 4 program and Friday, Nov 5 program


November 10, 11, 12, 2004

Geneva Centre International Symposium
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

November 18, 2004, 7-9pm, in Toronto

How to Complain Effectively
presented by Ombudsman Ontario. 
This interactive session will include:
  • learning skills to complain more effectively,
  • how Ombudsman Ontario can help solve problems with provincial services & learning how to make changes so others are treated fairly
When: Thursday November 18th 2004, 7:00 - 9:00 p.m.
Where: Bloorview MacMillan Children's Centre
  (MacMillan site @ 150 Kilgour Road)
Parking: regular parking rates apply at meters (there is heavy construction in area)
Cost: parents $5.00 and professionals $10.00
Childcare: NOT available
How to register: by phone (Pamela Kearns @ 416-425-6220, ext. 3310) or
e-mail (info@bloorviewmacmillan.ca)


November 17-20, at Reno Hilton

2004 Annual TASH Conference,
BLAZING THE TRAIL

The TASH Conference is the largest and most progressive international conference, known for pioneering strategies and blazing trails towards inclusive lives for people with disabilities and their families. You will not want to miss this invigorating conference, which brings together the best hearts and minds in the disability movement, and is jam-packed with over 300 topic specific breakout sessions, exhibits, roundtable discussions, poster sessions and much more.

Visit the conference website
http://www.tash.org/2004reno/index.htm
for updates and complete information.



November 24-26, 2004, in Ottawa
National Summit on Inclusive Education
Hosted by Canadian Association for Community Living
Crowne Plaza Hotel, Ottawa, ON
Conference brochure
Information schedule
To register Click Here


Thursday, December 2, 2004, 9am-4:30pm, in Toronto
DURHAM ASSOCIATION FOR FAMILY RESPITE SERVICES &
THE SOUTHERN ONTARIO TRAINING GROUP CO-SPONSOR
An Exploration of Some Higher Order Issues of
Restraint as a Human Service Technique

Location:  Room SHE560, 5th Floor, Sally Horsfall Eaton Building,
Ryerson University
Recently, the press, some advocacy groups, and professional organizations have been raising questions concerning the use of restraints in human services.  This workshop provides a forum for concerned individuals, especially service workers, to explore some of these troubling moral questions raised by the use of restraints in human services, especially within the context of the vulnerability of people who receive services.  This is not a how-to-workshop, but rather an opportunity for reflection and learning. Click for information and to register

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

World Talk Radio presents: Treating Autism Ethically
Click the above link to hear the recent radio broadcast featuring Chantal Sicile-Kira, author
of AUTISM SPECTRUM DISORDERS. Divided into three segments for convenience.
World Talk Radio is an internet radio talk show committed to lively,
bold discussions about the ethical concerns of our time, personal and professional.
Host: Kathleen Brooks, Ph.D. www.ethicalife.com


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 Health 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.


Regional Support Associates announces Video Conferencing for Southwest Region of Ontario

"The Ministry of Community and Social Services and Ministry of Children's Services selected RSA and its partners to implement the Video Teleconference Pilot Project for the Southwest Region. This state of the art equipment will create the opportunity to make all the clinical staff of RSA and other community partners accessible to all corners of the region. RSA has built a model of service which offers its clinical services to the individual in their home community."


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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

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


The Pebble

He went to the brook and he found a wee pebble,
But could not quite throw it, as others would throw.
The pebble was bigger than his thumb, but jagged.
He found it so vibrant, he could not let it go.

But how could he keep it, this wonder before him?
It had no "life" to it; this was just a "rock".
But he was attracted to it beyond "reason";
It was his one focus each moment 'round clock.

But others began to tease him to the limit:
They said he had taken his rock as "pet";
And they would go further, and call him just "crazy",
But not put a finger on him, as of yet...

But he was determined to live out his own life,
As he was not just but a slave for the crowd,
And when he was jeered at, and labelled as "mental",
He called his defenses, and showed he was proud.

But this did not stop them, the jerks and the bullies,
From throwing their weight right against him, with shame,
'Cause all that they knew was that they had to beat him,
As knocking him down was the name of the game.

But he still found strength in that little wee pebble,
And would not cave in to these bullies, no way;
And now he's enjoying his life to the fullest,
With his fascination--this rock,.... to this day!

-Brian Henson©2004


  


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