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.
"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
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.
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 has recently developed an interactive Service Map allowing individuals and service providers to find available ASD services and information.
View promotional poster. [HTML] [PDF]
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
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."
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.
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.
ANNOUNCEMENTS OF EVENTS
send submissions for
this news bulletin or for the OAARSN Calendar and Bulletin Board in
format by email to firstname.lastname@example.org with
"announcement" at the beginning of the subject line.
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.
April 22-23, 2008
Wales' 3rd International Autism Conference in Cardiff
Places are still available at
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
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
Recovery Rising - Meet the Strongest Gathering of Biomedical Presenters
Ever Assembled at an Autism One Conference
Parents.Doctors..Recovering children together
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:
-Toxic burden and detoxification
-Immunological dysregulation and autoimmune activity
-Metabolic profiles, including methylation capacity and transsulfation
International Conference of Center for Self-Determination
”Cutting Edge in a City with an Edge”
§ 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
International Conference on Diverse Abilities & Innovative Supports 2008
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
International Conference 2008 presented by Laurier Centre for Music Therapy Research
Exploring the relationship between music therapy and music education
Music Therapy keynote speaker, Dr Amelia Oldfield of the
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:
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 –
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,
AND OTHER RESOURCES
'Skill-Building Buddies' Developmental DVD Series Helps Teach
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
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.
The trailer can be seen at: http://www.youtube.
Previews of the forthcoming (2007) movie, about an autistic boxer's search for meaning in a
The teasing trailer can be seen at: http://www.youtube.
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
creatively about new
A HOME AND GOOD LIFE OF MY OWN
functioned as a
housing trust since 1997, its mission to help adults with "Autistic
live in their own homes with dignity
safety, supported by family and friends--and with self-directed
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.
resource that is valuable for anyone who is trying to direct their own
person-centred life, and for their families and friends.
Please click on this link for the flyer
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
announcements and comments to email@example.com We welcome news items,
announcements of autism events, new information,
discussion questions and comments, and accounts of experience.
Visit OAARSN's website and keep in touch through the OAARSN Listserv--send a message requesting to join to firstname.lastname@example.org