ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   20 April 2008


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GENERAL AUTISM NEWS, MAINLY ABOUT ADULT ISSUES

Autistic need support, not pity
"I, for one, am acutely aware of autism, and I don't need a special month to think about it, because I am autistic... I am one of the autistic adults who is proud to be fighting for the autism acceptance movement." So Lizzie Miller begins her guest column commenting on Autism Awareness Month for the Advocate-Messenger Online.
She continues: 

"It's impossible for me to speak for all autistic people on most issues. Autism is a spectrum disorder, meaning there are as many flavors of autism as there are autistic people. There are, however, a few things that I feel safe to say on behalf of the one in 166 people who have been diagnosed with an autism spectrum disorder.

"Do not pity us; it accomplishes nothing but harm. Help us by listening to us. Even those of us who don't or can't speak have plenty to say; we simply need to be given the opportunity. Don't pretend to know what's going on in our heads if you've never even bothered to ask.

"We are not puzzles; we are people. We are not broken; don't fix us. There aren't neurotypical people trapped inside us, waiting to be unlocked. We're just like you already, except we experience the world differently."

Diagnosis changes may affect autism rise
Report of research findings that
support the theory that the rise in autism may be due in part to changes in how it is diagnosed. The study, published in Developmental Medicine & Child Neurology, revisited 38 adults under the age of 31 diagnosed with developmental language disorders as children who had attended special schools or classes for children with language impairments. The researchers found about one-quarter of them met current diagnostic criteria for autistic spectrum disorders. The study leader noted the criteria for diagnosing autism "were much more stringent in the 1980s than nowadays and a child wouldn't be classed as autistic unless he or she was very severe. Now, children are being identified who have more subtle characteristics and who could in the past easily have been missed."

Will a 9-Year-Old Change the Vaccine Debate?
There’s no question that the case of 9-year-old Hannah Poling of Athens, Ga., has fueled the controversy about childhood vaccines. But what’s less clear is whether it will help unlock the mysteries of autism. Hannah was 19 months old and developing normally until 2000, when she received five shots against nine infectious diseases. She became sick and later was given a diagnosis of autism. Late last year government lawyers agreed to compensate the Poling family on the theory that vaccines may have aggravated an underlying disorder affecting her mitochondria, the energy centers of cells.

Muscle Weakness Found in Some Autistic Children
New research suggests that muscle weakness in a child with autism may point to an underlying genetic defect that's causing mitochondrial disease, which means the muscles don't get the energy they need. Conversely, it's possible that the mitochondrial disease may also play a role in the development of autism, perhaps by preventing the brain from getting the energy it needs to perform properly...

The Next Big Autism Bomb: Are 1 in 50 Kids Potentially At Risk?
By David Kirby in The Huffington Post.


Transgenic Mice Decipher another Part of Autism
Researchers from the Massachusetts Institute of Technology (MIT) have recently generated a mice model for autistic savants - a phenomenon in which an autistic person has an outstanding skill alongside his poor ability in social interactions. By using genetically engineered mice in which a specific protein in the brain was inactive, the researchers discovered an enhanced learning ability of the mice, but also an impaired long term memory, which resembles autism characteristics. The scientists hope that in the future, this work will lead to the development of treatment for autism and for other brain development disorders.

The Real World of Autism, By Chantal Sicile-Kira
Recently, a journalist asked my 19-year-old son what it was like to have autism. April is Autism Awareness month, and since Jeremy’s appearance on MTV’s True Life “I Have Autism,’ he gets emails from time to time from people wanting to know more. Jeremy uses a letterboard or Litewriter to express his thoughts, one word at a time.
"Being severely autistic means being stuck in a body that doesn't work well with no way to communicate," he typed in response to the question. For Jeremy, that’s what autism is like. But as many of us parents like to joke, “When you’ve met one autistic person, you’ve met one autistic person.” What autism looks like is different for everyone.


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AUTISM NEWS AND ISSUES IN ONTARIO AND CANADA


Tracking ASDs in Canada


A message from the Public Health Agency of Canada
What do governments need to track to better understand Autism Spectrum Disorders (ASDs), and improve policy, programs and services for individuals and their families?  Tell us now at www.asdsurveillance.ca Tracking autism – We want to hear from you! (aussi en français)

In November 2006, the Government of Canada committed to consulting with stakeholders about the feasibility of developing surveillance on ASDs in Canada. The Public Health Agency of Canada is now in the process of considering what information would be important to track about ASDs and how this information could be collected.

Over the past few months, the Public Health Agency of Canada has been working with Autism Society Canada, the Autism Spectrum Disorders-Canadian American Research Consortium (ASD-CARC) and the Canadian Autism Intervention Research Network (CAIRN) to consult with individuals, families, doctors and ASD researchers to see what can be done to track ASDs in Canada. Now we need your help.

Tell us what you think we should be tracking. Together we have developed an on-line survey to gather input on what information about ASDs is important to track among the group of Canadians with ASDs.

We want to hear from all members of the ASD community (including Autism, Asperger’s Syndrome and Pervasive Developmental Disorders Not Otherwise Specified), – individuals with ASDs, family members and other caregivers, doctors and service providers who diagnose and treat those with ASDs, school teachers and early childhood educators, adult service providers, those involved in policy and program development, and researchers studying these conditions.

The survey should take no more than 10 minutes to complete, and all responses will be kept strictly confidential.  The survey will be posted until May 20h at www.asdsurveillance.ca.  But why wait? Go to the web site now.  Tell us what information you think is important to track about ASDs.  Help us plan a better future for all Canadians.


AutismConnects
AutismConnects has recently developed an interactive Service Map allowing individuals and service providers to find available ASD services and information.
View promotional poster. [HTML] [PDF]

AutismConnects invites people with ASDs, their families and friends, educators, therapists, service providers, organizations, researchers, legislators and volunteers – anyone with an interest in autism and a desire to improve the health and quality of life of people with ASDs – to become a member.
View promotional poster. [HTML] [PDF]

Thanks to Autism Society Canada for hosting these posters.
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CALLS FOR HELP

Physicians who are Sensitive to Autism
We continue to receive appeals for advice of various kinds, including regular requests for recommendations of medical doctors in any part of Ontario who are "understanding and accepting of patients who are people with autism and who have a more holistic approach to treatment for medical conditions etc."
If you know someone you could recommend, please let us know, and we will pass on the advice.

Speech Language Pathologists who are Sensitive to Adults with Autism
We also receive appeals for advice about professionals in language and communication in any part of Ontario who are understanding and accepting of adults with autism and recognize their rights to express themsles in alternative and augmentative ways.
If you know someone you could recommend, please let us know, and we will pass on the advice.
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ANNOUNCEMENTS FROM WATERLOO REGION

Visit the new website of the Waterloo County Chapter of Autism Ontario at http://www.autismwaterloo.org/


List of CDs, DVDs, etc in Autism Collection at Kitchener Public Library
This high-quality collection  of materials about Autism spectrum Disorders was funded by Waterloo-Wellington Autism Services from 2003. Thanks to Sian Waterfield, KPL's Consumer Health Librarian, for updating information about the collection. 


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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

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Announcing Series of Events
PLAN Institute offers
Weaving the Ties That Bind
Online Training Course for Facilitating Social Support Networks
"Facilitated social support networks are an effective way to address the isolation and loneliness of many people living on the margins of our society. These networks (also known as “circles of friends”) are proven to contribute to the health, safety and well being of individuals who are vulnerable as a result of age, disability or social circumstance."
Click on title for details of availability and to register--for May, September, October, or November.


April 11 to July 13, 2008
Royal Ontario Museum (ROM) in Toronto is hosting an exhibit
Out from Under: Disability, History and Things to Remember
organized by the School of Disability Studies at Ryerson University
The 13-panel installation premiered in October 2007 at the ten-day Abilities Arts Festival in Toronto.

Learn more on the ROM website

A 60-page catalogue entitled Out from Under: Disability, History and Things to Remember (2008), accompanies the exhibition. Written by the curatorial team and produced by the School of Disability Studies at Ryerson University it will be available in soft cover for $30 (plus applicable taxes) at the ROM Museum Store and the Ryerson University Bookstore, 17 Gould Street, Toronto.


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Announcing Individual Events


April 22-23, 2008
Wales' 3rd International Autism Conference in Cardiff
Places are still available at
http://autismconnect.c.topica.com/maakEnhabFWsJa4kDJcb/
AWARES: Autism Cymru site with many other webpages relevant to adults)


April 23-24, 2008

Stages of Autism: Adolescence and Beyond
2nd Biennial Conference
In Hamilton Convention Centre
Message from Michelle McIntyre, event organizer: "The first Stages of Autism: Adolescence & Beyond Conference attracted 300 parents, educators, service providers and healthcare practitioners from all over Canada and the US. Don’t miss out on this great opportunity to attend a unique conference that will provide an open forum for discussion and cover a multitude of topics related to adolescent and adult Autism Spectrum Disorders."
Click for links to full conference information


Thursday April 24, 7 to 9 pm, in Guelph, discussion of
NEW INITIATIVE OFFERED FOR CHILDREN WITH AUTISM
Spark of Brilliance announces a new initiative for children and their supportive/families allies living with autism and developmental challenges!
KidZCreate will be launched in the spring of 2008! Highly qualified Creative Mentors will be facilitating workshops in creative expression, learning about nature, experiencing music and sounds, working with creative materials, and much more!

Spark of Brilliance along with Trellis and KidsAbility and will be meeting with families, children and supportive professionals on Thursday April 24 from 7 to 9 pm at 8 Royal Road to present our program and generate dialogue that will enable us to provide the very best in creative programming! Please click on link for more.



Thursday-Friday, May 8-9, 2008, all day, in the City of Vaughan
Families for a Secure Future invites you to a two day workshop on
The Power of Social Roles presented by Judith McGill
All of us play a variety of social roles in our lives and it is through these roles that others come to know us.  This workshop will explore how people with disabilities can get caught in negative roles and stereotypes and what that does to how they come to see themselves and how others view them.  It will examine how to support people to participate in the community in valued leisure and work roles that significantly assist them to break out of the negative roles and expand the positive roles that they find themselves in.
Please click for more and how to register




May 21-25, 2008, in Chicago
Recovery Rising - Meet the Strongest Gathering of Biomedical Presenters
Ever Assembled at an Autism One Conference
Parents.Doctors..Recovering children together
One Mission
Autism One www.autismone.org
Autism One, a member of the Autism Collaboration (http://www.autism.org), the most experienced collective body of autism organizations worldwide covering all aspects of the spectrum, joins in celebrating the message that "autism is treatable and recovery is possible."
The Autism One 2008 Conference will bring together the most recent research and treatments in the most crucial biomedical areas:
-Oxidative stress
-Toxic burden and detoxification
-Immunological dysregulation and autoimmune activity
-Metabolic profiles, including methylation capacity and transsulfation


May 27-29, 2008, in Detroit
“Everyday Freedoms”
International Conference of Center for Self-Determination
”Cutting Edge in a City with an Edge”
Detroit Marriott, Renaissance Center, Detroit, USA
Conference Highlights:
§                            Discussions about meaningful lives, real freedom
§                            Community membership, income asset & development
§                            Aging with dignity & freedom
§                            Recovery in the context of self-determination
§                            Families truly supported to best assist in developing self-determined lives
§                            International perspectives on these issues as well as discussions of what system change requirements are needed: what works and what interferes
Click for more information


June 8th Nathan Philips Square
(Autism Speaks) 2008 Walk Now for Autism
Click for poster


June 9-11, 2008, in Honolulu, Hawaii
International Conference on Diverse Abilities & Innovative Supports 2008
Life, Liberty, & the Pursuit of Community

Join us as we explore topics such as:
Dual Diagnosis * Direct Support Worker Issues & Solutions
Supervision & Managment * Clinical Issues
International Best Practices * Self-Advocacy/Independent Living
Autism/Aspergers * Employment * Caregiving
Find out more from http://www.lifelibertyandthepursuitof.com
Questions?  lifelibertyandthepursuitof@craconferences.com
1-888-542-8555 CRA, 373 JaMax Dr., Hillsborough, NC 27278


June 13-15, 2008, in Waterloo
International Conference 2008 presented by Laurier Centre for Music Therapy Research
Making Connections:
Exploring the relationship between music therapy and music education

Music Therapy keynote speaker, Dr Amelia Oldfield of the UK, is specialized with music therapy with autistic children. 
Pre-Conference workshop June 12, 2008
Click for full informati


June 23-25, 2008
Summer Institute at University of San Diego
Autism: Work With Me, Not On Me
This unique conference brings state-of-the-art ideas from national and international speakers on how to better understand and support individuals who live with autism. Topics will include:
  • Rhythm, Relationship, and Communication
  • The Role of Movement Differences in Communication and Participation
  • Applying Dynamic Systems Theory
  • Communication Supports
  • Supporting Social/Emotional Development
  • Relationships and Relationship-Development
  • Sensitivity Training – Understanding the Lived Experience of Persons with the Autism Label
  • Relaxation Techniques and Yoga
  • Exploration in Using Rhythm as Accommodations
  • Panel of Individuals with Autism
  • Autism Hub Bloggers
Click for a poster



September 4-7, 2008
US Autism & Asperger Association presents
2008 International Conference in San Antonio, Texas
featuring Paul Shattock and Doris Rapp
Conference Theme: Treating Autism as a Medical Disorder:
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together

Click for overview and early registration



October 22, 23, 24, 2008, in Toronto
Autism 2008 – Geneva Centre for Autism International Symposium
The Symposium will provide a cross-section of perspectives on the most recent research and information on evidenced based best  practice.  All topics of importance to autism intervention will be addressed including bio-medical and neurobiological research, ABA, intervention, social skills, behaviour, communication, first-hand accounts, Asperger’s Disorder, and more.  Featuring speakers from Canada, U.S., Great Britain, and Australia.  For registration information, visit www.autism.net or contact Eva Finna at efinna@congresscan.com or 416-504-4500 ext. 208.

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BOOKS AND OTHER RESOURCES


Understanding Asperger Syndrome: A Professor’s Guide

The Organization for Autism Research (OAR) has released a 12-minute video for use by college students with Asperger Syndrome as a tool to educate their professors, teaching assistants, and others about the disorder.  OAR produced the DVD in cooperation with the Global Regional Asperger Syndrome Project (GRASP) and Pace University in New York thanks to a grant from the Schwallie Family Foundation.  The video is available now for viewing and download at no cost on OAR’s Web page, www.researchautism.org/resources/AspergerDVDSeries.asp


New Book Unleashes the Superhero in Kids with Asperger Syndrome and High-Functioning Autism
"Superflex: A Superhero Social Thinking Curriculum" provides educators and parents with fun and motivating ways to teach elementary school students with Asperger Syndrome and high-functioning autism how to build social skills. The book, authored by speech-language pathologists Stephanie Madrigal and Michelle Garcia Winner, is the seventh book in a series on autism spectrum disorders. The book will be available on April 2, which the United Nations has declared World Autism Awareness Day. - 2008-03-31

New 'Skill-Building Buddies' Developmental DVD Series Helps Teach
Successful Social Interaction Skills to Children on the Autism Spectrum

Autism, while a complex and often confusing neruodevelopmental disorder that greatly affects a child's ability to communicate and socialize, is not unmanageable or impossible to overcome. In fact, parents of children with Autism Spectrum Disorders (ASD) have an incredible new tool, Skill-Building Buddies, to aid in their children's behavioral development. This new series will be available on DVD April 1, 2008 for April's National Autism Month. - 2008-03-26


Look Me in the Eye: My Life with Asperger's by John Elder Robison

Crown, 2007. ISBN: 978-0-307-39598-6 (0-307-39598-7)
The moving, darkly funny story of growing up with Asperger’s at a time when the diagnosis simply didn’t exist. A born storyteller, Robison takes you inside the head of a boy whom teachers and other adults regarded as “defective”....
Read review in New York Times


Families of Adults with Autism
by Jane Johnson and Anne Van Rensselarer, eds.
Jessica Kingsley Publishers, 2008.  ISBN-10: 1843108852   ISBN-13: 978-1843108856
"A collection of real-life stories of people on the autism spectrum growing up, as told by their parents and siblings. The individual accounts explore the challenges that families of people with autism have faced, and the techniques they have used to improve the quality of their children's lives, from mega-doses of vitamins and dietary changes to intensive interaction. The contributors also relate how they have worked with their children or siblings to help them to function at their highest possible level, be it showing an awareness of their environment, holding down a full-time job in a local store, competing in the Special Olympics, or achieving international recognition as an artist.
"What makes the book especially interesting is that most of the subjects in the stories were born in the 1950s-the generation whose parents were told that they caused the disorder by cold parenting.  Faced with nearly non-existent services, these so-called "Refrigerator" parents rolled up their sleeves and set to work to find ways to blaze the trail for succeeding generations in the realm of adult issues such as living arrangements, employment, and recreation. The fact that sometimes the parents succeeded beyond expectation and sometimes the odds were simply too great makes it both a heart-warming and occasionally a heart-breaking read." 


Creative Therapy for Children with Autism, AD/HD and Asperger's Using Artistic Creativity to Reach, Teach and Touch Our Children. Book by Janet Tubbs
      It is no easy task to find a teaching technique that can truly change the course of a child with special needs. Thirty years ago, when Janet Tubbs began working with children who had low self-esteem and behavioral problems, she developed a successful program using art, music, and movement. Believing that unconventional children required unconventional therapies, she then took her program one step further--she applied it to children with Autism, AD/HD, and Asperger’s Syndrome. Her innovative methods and strategies not only worked, but actually defied the experts. In this new book, Janet Tubbs has put together a powerful teaching tool to help parents, therapists, and teachers work with their children.
      The book is divided into four parts. Part One begins by introducing and explaining Janet’s novel approach to teaching. Her goal is to balance the child’s body, mind, and spirit through proven techniques. The next three parts provide a wide variety of exercises, activities, and games that are both fun and effective. Each is designed to reduce hyperactivity, increase and prolong focus, decrease anger, develop fine motor skills, or improve social and verbal skills. All are part of a program created to help these children relate to their environment without fear, anxiety, or discomfort.
      Just because a child may appear stubborn and difficult, doesn’t mean that the child isn’t intelligent, curious, or creative. With the right approach, such a child can be reached, taught, and, hopefully, started on the road to improvement. The daily lessons provided in this book may be just what you and your child have been waiting for.


GLIMPSE
Welcome to GLIMPSE, a new publication of ICDL that showcases the writings and artwork of individuals with a history of autism spectrum disorders and other developmental disabilities. We hope to provide a GLIMPSE into the unique perspectives and rich inner lives of people who might otherwise not find a voice. We welcome your submissions and feedback (see last page), and hope you enjoy our first edition.

The Soul of Autism, the follow-up book to Autism and the God Connection, is now in print from New Page Books and, as of today, is available on Amazon.com for $10.19 (discounted from its $14.99 retail price); it will arrive in bookstores by month's end at the latest. To learn more about it and to read the advance praise it's garnered, kindly visit the "Bill's Books" section of www.williamstillman.com.


God's Ears

Previews of the forthcoming (2007) movie,  about an autistic boxer's search for meaning in a 
relationship...
written, directed, and starring Michael Worth:
The trailer can be seen at: http://www.youtube.com/watch?v=B8gV6jRUaWk
The teasing trailer can be seen at: http://www.youtube.com/watch?v=82a_dNMj-8I


A Place Called Home--second edition now available

Alison C. Ouellette is happy to announce the newly updated and revised second edition of “A Place Called Home” this month. It describes the journey of the Ouellette family and their son David’s quest for an everyday life, and contains new stories of a life unfolding, photos and contributions by friends and family.
If you are interested in this new release, you can order copies through Alison’s or David’s web site. There is an order form there for you to download. http://home.cogeco.ca/~aco-web/ or http://home.cogeco.ca/~davidkyle


Thinking creatively about new opportunities
for person-centred and self-directed lives.......... just published

CREATING A HOME AND GOOD LIFE OF MY OWN
Strategies and formal agreements developed by
Guelph
Services for the Autistic in its role as housing trust

GSA has functioned as a housing trust since 1997, its mission to help adults with "Autistic Disorder" to live in their own homes with dignity and safety, supported by family and friends--and with self-directed planning, individualized funding, and infrastructure services as needed.

Other families and organizations, concerned with persons who have other special needs, are interested in following the paths pioneered by GSA, so we have compiled this 120-page guide to the various agreements and procedures, with some explanatory text.

A new resource that is valuable for anyone who is trying to direct their own person-centred life, and for their families and friends.
 
Contents: (click the links to reach an excerpt)

Please click on this link for the flyer

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MORE ABOUT OAARSN

See our
archive of past OAARSN news bulletins.
Read about why OAARSN was started and the tasks still ahead


You may be interested in our Creative Supports Bulletins which carry news about disabilities and special abilities and creative strategies more generally. See for example:  http://www.ont-autism.uoguelph.ca/CS-20060720.html

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 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 announcements 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 if you have an online version to which you can provide a link.

Visit OAARSN's website and keep in touch through the OAARSN Listserv--send a message requesting to join to gbloomfi@uoguelph.ca