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

  6 September 2004

Call for Help

Seizures and Sensitivities to Medical Procedures and Drugs
A man diagnosed with classic autism as a young child began having grand mal seizures as an adult at the age of 30. Frequency now averages one seizure every four months. All seizures have occurred at home and follow a similar pattern. He has not been damaged in falls, and calmly sleeps off the lethargy that follows each seizure. He really dislikes and avoids all medical procedures and drugs. He has high sensitivities to just about anything, including touch, and he reacts paradoxically to drugs. At present he has no physician because of the shortage in Ontario.
Does anyone have experience or insights that might help? This man is very sensible and wants to know his options and make choices. Are there any "gentle" ways of doing an EEG? What are the risks of not examining or treating his condition? Are there new forms of treatment to which he would not react negatively?


Online Social Support Groups for Teenagers with Aspergers?
Increasing numbers of school leavers with Aspergers look for social support when they are leaving school. Many of them have special interests in aspects of computing. Could you recommend any existing networks? Are there live support groups who could share their experience to encourage the formation of new groups in other regions?


If you can help in either of these situations, please reply first to gbloomfi@uoguelph.ca, and we'll put you in touch.


Thanks to all who have responded to previous calls for help.


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ISSUES AND ADVOCACY

Update: MCSS consultations towards transforming developmental services
The Ministry of Community and Social Services is now taking the first steps to begin a major
consultation process that could lead to significant changes in the way people who have developmental and intellectual disabilities are supported in Ontario.

United Family Congress reports meeting

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ANNOUNCEMENTS OF EVENTS 

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 new announcements are listed here. For previously announced events, opportunities and projects that are still current, please click on this link

September 10-11, 2004, in Belleville
Kerry's Place Autism Services: 30th Anniversary Conference
Keynote address on Autism and Dual Diagnosis. Other sessions on autism simulation, person centred planning, social understanding, AAC, personal outcome measures, unraveling the genetic mysteries, TEACCH, functional assessment, and personal experience.
Click for 2-page brochure Click for registration details and form


September 17, 9-4pm, in Sarnia
Circles of Support--Thinking Outside the Box
A workshop led by Peggy Corrigan-Dench and Dale Munro of Regional Support Associates
Click for flyer and to register


September 18, 2004
, 10:00am to 1:15pm, in Toronto

Kerry’s Place Autism Services invites you to a Half Day Workshop

Nurturing Support Circles – The Key to Lifelong Safety, Security and Quality of Life

Columbus Room, Centre, 901 Lawrence Avenue West, in Toronto (at Lawrence Ave. W. and Dufferin St). Lunch will follow. Panelists include Judith Snow, Graham Treeby and David Edmonds. Click for more details and registration form


September 21, 2004
Deadline for Early Bird Registration for

Geneva Centre International Symposium
November 10-12, 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

September 28 and 29, in Windsor

MAKING CITIZENSHIP REAL: GAINING CONFIDENCE FOR THE JOURNEY
a workshop about "living a real life with the rights and responsibilities of citizens, versus fitting into structured programs and schedules designed by others".
Facilitated by Judith Snow and Martha Leary and hosted by the Windsor-Essex Family Network & Resource Centre.
See full details in flyer: Inside page
Outside page

September 30-October 1, 2004, in London
Tools for Excellence--continuing the journey
with Michael Kendrick, Judith Snow, John Lord, and Helen Watson
Sponsored by MCSS and "Are we doing what we say we're doing?"
and organized by Community Living Tillsonburg.
Click for details and registration form


October 14, 2004 in Peterborough
Living with Autism - "Making the Social Connection"
8th Annual Forum on Autism
At the Peterborough Naval Association, Peterborough, On
For more information contact Darlene Remus at remus@nexicom.net or Beverly Randall at beverlyr1@hotmail.com


October 20, 2004, in Buffalo

Future Horizons presents
Autism/Asperger’s 2004 Buffalo!
Tony Attwood, World Famous Expert on HFA & Asperger’s Syndrome
Adam’s Mark Buffalo-Niagara
120 Church Street, Buffalo, New York 14202
Phone (800) 444-2326, Local (716) 845-5100
Registration Fees – Register Early- Seating is Limited!
Professional $135 *Group rate Professional $115
Family Member/Student $110 *Group rate Family/Student  $95
Person w/ Autism/Asperger’s   $75
*Group is 5 or more people on one check, credit card or purchase order
**Continuing Education Credits available from ASHA/APA and may satisfy state licensing requirements for special education teachers and related special service professionals. Please consult your state’s licensing agency
More information 

Future Horizons, Inc.  721 W. Abram St., Arlington, TX 76013      Tel 800-489-0727
Register online - Go To:  www.FutureHorizons-autism.com   Fax 817-277-2270


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


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.

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Strategies that Work for Persons with ASD

Mercury Detox Methods--message about inclusion in a survey!
Dr Bernard Rimland of Autism Research Institute sends this message to parents who have been trying mercury detox methods

In ARI's ongoing (since 1967) monitoring of parent evaluations of various treatment modalities, we have never encountered a
biomedical intervention with higher parent ratings of effectiveness than are now being reported for mercury detoxification and
chelation. See the August 2004 update of parent ratings of "Biomedical Interventions" on our website:
www.AutismResearchInstitute.com (under heading: Topics of Special Interest).

Note that 75% of the 189 parents who reported using mercury detox on their children claimed "good" results. This is a higher
"good" rating than any of the 76 other interventions -- better than any drugs, vitamins or special diets.

There is a great deal of disagreement and controversy about the various ways of detoxifying. ARI is actively engaged in learning
"what works best," so we can inform parents and physicians. We have already contacted the 189 parents mentioned above, to learn
more about their experience with detoxifying/chelation.

The ARI website includes the ARI Mercury Detox Consensus report, based on our February, 2001 Think Tank of experts. Much
has been learned since then, so ARI is convening a second Think Tank of experts in late September. We would like to present our
Think Tankers with the results of our mercury detox survey. If you did detox your autistic child and are not part of the group of
189 we are contacting separately, please complete the survey form RIGHT AWAY at: www.AutismEval.com/DetoxSurvey

This email is now being sent to as many parents as we can reach. Many of you have experience with mercury detox done on your
own or with help of a health-care practitioner. Your experience can add valuable information to our database. Please help!


Music Therapy: The Power of Music
A site created by Matthew J. Bush of Hanover PA, that examines the power of using popular music in therapy. Includes examples of therapeutic messages in popular music as well as original music by Freudian Slip, therapeutic rock band.

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AUTISM BOOKS AND OTHER RESOURCES

Dennis Debbaudt's Autism Risk & Safety Newsletter July 2004
Includes:

  • Copy of report in The Journal of Emergency Medical Services (JEMS) June 2004 issue  by Loralee Olejnik "Understanding Autism: How to appropriately & safely approach, assess & manage autistic patients"
  • Pensacola Police Department's Take Me Home Database Debuts
  • Autism Alert Window Gels
  • Silent No More Communication Boards
  • Autism & Law Enforcement Video Update
  • Autism & Airport Travel Safety Tips
  • Upcoming Conferences & Workshops


My Sad is All Gone is the true-life story of how the author's autistic son, Julian, became suddenly violent, self-mutilating and "psychotic" in his early teens. He would tear strips of flesh off his face, slam his head against walls, "see" faces of students jeering at him, and throw himself through windows. Three police officers couldn't hold him down during a rage attack. His parents tried everything, including behaviour modification, cognitive techniques, and other therapies, and even anti-psychotic medication, but to no avail. After Julian's horrific experience on Perphenazine,  they were desperate.
When Julian was sixteen, they luckily met  Dr Joseph Huggins, a Toronto doctor whose experience and expertise in treating violent rage attacks was to help Julian. He calmed down on Dr Huggins' medication protocol, and began a new life learning to read and write again, take music therapy, learn to paint with water colours, and mix socially with others. Today, at 27, Julian has four community jobs, and is a loving, loveable young man! 

My Sad is All Gone is a powerful compassionate book, offering searing insight into the education of autistic children over the decades, and into the world of psychiatry. Temple Grandin,  author of Thinking In Pictures, writes:  "My Sad is All Gone is essential reading for anybody who needs to learn about pharmacological treatments for severe rage in teenagers and adults with autism."

Thelma is past-president of Peel chapter, ASO.  She specialized in teaching autistic/DC children whom she taught for nine years in the Peel District Board before retiring.  My Sad was written entirely in the coffee shops of Port Credit, away from home!  Thelma is twice winner of the Mississauga Library Short Fiction Contest, winner of Cross-Canada Writer's Quarterly Short Story Contest, and has published stories, poetry, and articles on autism.  She is the first Canadian parent to publish a book about an autistic child, and the first world-wide to write about violence, self-mutilation and psychosis in an autistic from a parent's viewpoint.

Thelma gives talks and presentations on controlling violence in autism as a parent.  orchard@ica.net.  416-763-4408.

To order My Sad is All Gone by Thelma Wheatley.  Lucky Press. luckypress.com,  October, 2004:

On-line:   www.booksurge.com.  in Canada, UK and Australia.   luckypress.com/wheatley in US. $18.00 US.

Available also in book stores.Quote  ISBN number:  0-9760576-0-3

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES


We post Brian Henson's essay that likens the life of each person with autism to dwelling in a cave. It begins:

"Each one of us is in a cave--a cave of fear of social rebuke....
Our caves are the only means of personal security that each one of us has."
Read The Cave Dwellers


OAARSN's recent posting of Brian's reflections on the poet as peacemaker has prompted more news and links about autistic writers and poets.

Finnish Writers and Poets with Autism
A scholarly essay based on observing spontaneous creative writing among participants of a public Finnish AS/HFA Internet discussion forum. The author sought to answer these questions: Within the context of autistic internet culture, could obvious differences be found in the emotional experiences and self perception of the participants from a small area isolated by language as compared to the larger, multi-national, English-language forums? Could the freely and spontaneously developing autistic internet culture accept projects aiming to structure parts of it, to concentrate some of its knowledge into more accessible forms? Could individual, talented writers on the autistic spectrum benefit from having their texts jointly advertised, e.g. in the form of increased feedback, contacts and international interaction? How do the writings of the AS/HFA adults in this project fit the current theories on sense of self, imagination and language in autism?


The Autistic Distinction by Kathleen Seidel
on the occasion of Gayle Fitzpatrick and Charles Rankowski vs. Town of Falmouth


Kyle Priebe has made a movie about his life, My Life as an Autistic Boy
He writes:
"It's all about me and what it's like to have Autism.  There are good things about Autism, and things that are confusing, and I talk about them in my movie.  I tell the story of my life from preschool to high school, my struggles to learn and make friends, and my successes.
"My teachers, therapists, family and friends have all said that it is a great movie, and now they use it to teach other people about Autism.  I like that.  People laugh, and sometimes cry, when they watch my movie.  I am not sure why, but they say it is a good thing.
You can read more about it and see pictures at this web site: http://users.adelphia.net/~d.priebe/ 
"My dad helped me make my movie, but I narrated it by myself. I am proud that I won a Temple Grandin Award from Future Horizons.
I want people to know about me, and that means knowing about Autism.  If you want to buy a copy of My Life as an Autistic Boy, the cost is $40, and that includes shipping and handling.  It's 18 minutes and 26 seconds long.
"Send a check or money order for $40 to Kyle Priebe, 3301 Big Cloud Circle, Thousand Oaks, CA 91360USA.  Tell me if you want a DVD or VHS copy.  And be sure to send your address so I can mail it to you.
You can email me at  KylePriebe@adelphia.net


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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