ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN


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OAARSN NEWS BULLETIN
 
1 July 2006


GENERAL AUTISM NEWS

RSRF-funded Research Links Rett Syndrome To Mitochondrial Gene
New research from the lab of Adrian Bird, a molecular geneticist at the University of Edinburgh, Scotland, reveals that abnormally high levels of a protein called Uqcrc1 in the brains of mouse models of Rett Syndrome cause mitochondria--the cells' powerhouses--to work overtime. "This is the first time a mitochondrial gene has been linked to Rett Syndrome," says Dr Bird. Co-author Skirmantas Kriaucionis, now at Rockefeller University in New York City, hopes the finding will lead to treatments for the disorder.  "Knowledge of specific physiological defects will, in the future, provide targets for therapeutic intervention," he adds. This research, which was funded in part by the Rett Syndrome Research Foundation, appears in the July issue of the journal Molecular and Cellular Biology.
Rett Syndrome (RTT), a devastating neurological disorder, strikes 1 in 10,000 young children, almost all of them girls (RTT is the leading genetic cause of severe impairment in girls). Symptoms include neuromuscular
problems, autonomic dysregulation, seizures and seizure-like episodes, stereotypical hand movements and the inability to speak. Many children are wheelchair-bound, scoliosis is common, and though the majority live to
adulthood, they require total care for every aspect of life.

Clue to development of autism found in placenta
US scientists compared the placentas from babies who went on to develop autism with those from normal children, and found that a characteristic pattern was three times more common in the former. The team, led by Dr Harvey Kliman of Yale School of Medicine, examined placentas from 13 autistic children and 61 without the disability. In each case, tissue samples from the placentas had been stored at birth. The team has reported in Biological Psychiatry. Read account in Scientific American


Autism Spectrum Disorders in Relation to Distribution of Hazardous Air Pollutants...
Research abstract: Our results suggest a potential association between autism and estimated metal concentrations, and possibly solvents, in ambient air around the birth residence, requiring confirmation and more refined exposure assessment in future studies.


Mind-Reading Computers Could Help Those With Autism
British and U.S. scientists are developing an "emotionally aware" computer that can gauge an individual's thoughts by analyzing facial expressions. The technology could have practical applications for people with autism, researchers said. "People express their mental states all the time through facial expressions, vocal nuances and gestures," said Professor Peter Robinson of the Computer Laboratory at the University of Cambridge in London. "We have built this ability into computers to make them emotionally aware." But, he asks: "Would we want computers that can react to our emotions? Such systems do raise ethical issues..."

Savant syndrome is doc's lifetime study
A fascinating story about Dr Dorold Treffert, clinical professor in the UW psychiatry department and a former Wisconsin Medical Society president, who is trying to decide which institute of higher education should house the materials of his lifetime study of savant syndrome, in which mentally disabled people demonstrate pockets of genius. Treffert would like a center for excellence established, to encourage multidisciplinary research and be a clearinghouse for public information.

Autism care centre opens its doors

A new centre for people with autism has been officially opened. Old Barn Cottages at Kenny Hill, near Mildenhall in England, begins as a day centre, helping people with autism to become more independent--through. It offers cookery and baking sessions, gardening, art and music therapy as well as computer training. The National Autistic Society (NAS) has plans to build four individual homes on the site for people with autism.


Adults with autism find services lacking
A story from southern Delaware that, sadly, could be about most communities.


Thousands of Scots with Autism Will Benefit From New Centre
The Scottish Autism Service Network will create a hub at Strathclyde University where people affected by autism spectrum disorders can be sent to for support. Experts say there is a huge difference in services for autism across Scotland, with many families relying on the Internet for advice and information. An estimated 20 per cent of Scots have a learning disability, such as dyslexia, autism, dispraxia or Asperger's syndrome. The aim of the new network, funded by the Scottish Executive, is to provide easy-to-access, independent information on local services and to encourage networking. Parents will get the chance to help shape the service, before it is launched later this year, by giving their views.


Autism Movement Seeks Acceptance, Not Cures

Michael John Carley is trying to change your image of autism. He has autism and he's happy just the way he is. He thinks that might surprise you. Carley didn't know he was autistic until he was diagnosed with Asperger Disorder at age 36. The diagnosis changed everything he'd ever understood about himself. Asked if he would choose a cure if one were available, he replies: "Never will. Never ever will....I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world looks at me and go, 'God! I wish I could do that.' No, I am not changing anything.This NPR program also features several other adults with autism--Courtney Downs, Amanda, Jim Sinclair. This link includes a chronology of general awareness of autism and Aspergers.

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NEWS FROM CANADIAN AUTISM ORGANIZATIONS


Focus on Change: an open letter from Autism Society Canada
(23 June 2006)
"Over the last 30 years our mandate has remained constant: to work toward the necessary changes that will improve the quality of life of Canadians with Autism Spectrum Disorders across their lifespan. We would like to take this opportunity to update you on our activities and our community." Includes a 2-page appendix: Service Needs Across the Autism spectrum Disorder Lifespan. Click on title to read.

Autism Ontario: a new look and shorter name for Autism Society Ontario
Margaret Spoelstra, ED, writes: "Following a year long process, Autism Ontario is pleased to announce its new look, name and website. Although we will still be known legally as Autism Society Ontario, we have moved into a new era for our organization. At our AGM and ASD Conference this past weekend, we revealed our new name - Autism Ontario. We've dropped the word "society" in order to remove a sense of exclusivity that the word "society" suggests, and to be clearer about our purpose in this province. Our tag line "see the potential" more accurately captures our resolve and public message about individuals with ASD and their families."  Visit the new website 


Autism Awareness in Prince Edward Island

On July 2, Alex Bain will set out from North Cape on a tip-to-tip Island trek that he hopes will raise awareness of autism and fundraise $6,000. Alex Bain doesn’t want to find a cure for his autism. Rather, Bain, an 18-year-old Oyster Bed resident, says autism is not something to be ashamed of. Instead of running to find a cure for the disease, the focus of many autism runs, Bain wants to raise awareness of it, says his mother, Janet Norman-Bain. As well, he hopes to fundraise $6,000 or $20/km for the nearly 300-km trek from North Cape to East Point, to bring Dennis Debbaudt to Prince Edward Island this September for a series of seminars. Debbaudt, a Florida-based professional investigator and father of a 22-year-old autistic son, educates law enforcement, medical and first respondent personnel on how to recognize and respond to autistic persons.

Bain’s mother will join him on the trip, following him on her bicycle. In a recent interview with The Guardian, she said the public must understand that autism doesn’t have to be a devastating, life-ruining burden. “Autism is getting a lot of bad press these days. Autism is made out to be a horrible monster and a family-wrecking horror, but it isn’t,” said Norman-Bain, who was interviewed on behalf of her son. This is the message she and her son hope to send as they raise autistic awareness. Autism is a neurological disease classified as a developmental disability.

Bain is running for a good cause, considering there are many misconceptions and preconceptions concerning the disease, said Paul Wright, a member of the P.E.I. Roadrunners Club. It’s important to educate the public and help them understand the challenges people with autism face, he said. “He’s running for autism, not against it. I think it’s wonderful,” Wright said.

Bain, who was diagnosed with autism at age three, has spent nearly every day training for the run. An impressive athlete, he participates in a road race most weekends as a member of the Roadrunners. In 2004, he was named the Roadrunners’ Patterson Palmer Rookie of the Year. And although he didn’t learn to speak until age six, he graduated from Bluefield high school last year with honours, receiving top prizes in math and English. With his myriad of accomplishments, Bain has been an inspiration for many in his community, his mother said. Many of his successes in life can be attributed to his family and friends, who were never condescending towards him, she added. She said her son’s accomplishments prove autism doesn’t have to be a hindrance. She hopes his success story will help dissolve stereotypes people may have of autistic persons’ intellectual or physical capabilities.

“Especially for parents of newly diagnosed kids or people who have yet to have diagnosed kids, they need to know it’s not a family-wrecking plague,” Norman-Bain said. “All autistic kids will improve, and some will do phenomenally well.” Thus far, her website, www.planetautism.com/runman/ promoting her son’s run has received visitors from China, Argentina Poland, Saudi Arabia, and India. Clearly, word is spreading in the autistic community, she said.

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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


Autism One Radio Schedule
A Worldwide, Web-Based Radio Station for the Care, Treatment, and Recovery
of Children with Autism  http://www.autismone.org/radio


For example: 
Rhonda Brunett, host of Unlocking the Door to Autism
Interview with William Stillman, author of Autism and the God Connection
Thursday, July 6, 2006
12:30 p.m. – 1:30 p.m. EST
William Stillman is  Autism Spectrum Self-Advocate, Author, and Consultant.
www.williamstillman.com


July 8-13, 2006
, in Toronto
Inclusion Network presents
The Toronto Summer Institute
INCLUSION, COMMUNITY AND DIVERSITY
FOR: People working actively on the complex issues of inclusion and diversity in communities, workplaces and schools will want to attend this event. This Institute is for Thinkers and Doers. - for people who know there are no easy answers and who are seeking new ways of thinking and acting. This will be a unique adventure in building a learning community together. The faculty see themselves as a jazz combo who have a definite theme and a flair for improvisation - harmonizing with the participants.
Click for flyer



July 10 -
July 12, 2006, in San Diego, CA
The University of San Diego announces
1st Annual Autism Institute.
People Moving On: A 21st Century Approach to Understanding and Supporting Individuals with Autism and Those Who Care For Them and About Them
At last, an approach to autism that integrates neurological, behavioral, social and communication knowledge in a holistic and respectful person-centered way.”
Drawing on over a century of combined experience in autism research, training and practice, Anne M Donnellan, PhD, Gary W LaVigna, PhD, Martha Leary, MA, CCC-SLP, Kate McGinnity, MS, Nan Negri, PhD, and Jodi Robledo, PhD will address:
* Learning from First-Hand Accounts
* Valuing People and Developing Successful Strategies from Early Intervention through Adulthood
* The Role of Movement Differences in Communication and Behavior Challenges
* Supporting Social/Emotional Development
* Communicative Functions of Behavior
* Humanizing and Personalizing Effective Applied Behavioral Analysis Approaches
* Communication Supports
* Sensitivity Training: Understanding the lived experience of persons with the autism label
* Relaxation Techniques and Yoga
* Sensory-integration and other techniques
Click on this link for full details


July 17-21, 2006, in Syracuse

The Facilitated Communication Institute at Syracuse University
is hosting a week long summer institute.
Conference sessions and hands-on workshops are
aimed at both new and veteran FC users and facilitators.
Please check out the flyer by clicking on this link.


Monday, July 31 at 11:30 am,
outside Kitchener City Hall
Autism rally for the Waterloo-Wellington area, to press the Ontario government to provide ABA for all children who need it and to get ABA into the schools. Some children and parents have been sitting on the waiting list for ABA for up to 2 years. The rally  will be the 14th in a series that have been in many Ontario communities, such as Kingston, London, Windsor, Toronto, Oakville. The rally in Windsor attracted 200 people,


August 21-23, 2006
, in Guelph
Creating Collaborative Partnerships:
Community and Schools Working Together

Each day, 8:30 am to 3:00 pm
St. Michael Catholic Elementary School, 9 McElderry Road, Guelph
For professionals working with a Student with an Autism Spectrum Disorder (ASD). NB: Not open to family members.
Click for program
Registration extended: It’s free but you must register
Click for registration form
Offered by Erinoak with Wellington Catholic District School Board and Upper Grand District School Board


Monday 18 September 2006, in Cambridge UK

The Autism Research Centre (ARC) at the University of Cambridge announces its

First Autism Research Conference at West Road Concert Hall, Cambridge.

Features include keynote speakers, poster presentations and an autism publishers' fair. 

Calling all artists and musicians. As part of the conference, there will also be a music concert and an exhibition of art by people on the autistic spectrum, taking place on Sunday 17 September 2006 at the same venue. Artwork will be auctioned on the day and proceeds will be divided equally between the artists and autism research. Profits from the concert will also be donated to autism research. The ARC is calling for artists and musicians who would like to get involved in the celebrations and perform or exhibit on the day. They welcome applications from people with autism spectrum conditions (or their carers on their behalf) who would like to be considered as performers in the concert, or have their artwork exhibited. For further information about the conference, art exhibition and concert visit: www.arc-conference.com



October 5-November 5, 2006, in Toronto
The Joy of Autism: Redefining Ability and Quality of Life
By TAAP: The Autism Acceptance Project

Presentations by authors, parents, researchers and autistic people, with a variety of views
A gallery exhibition will be held from October 5 through November 5, 2006 at the Lonsdale Gallery.
Lectures by researchers will discuss recent studies of autistic cognitive abilities.
Clinicians and autistic people will present views based on their lives with autism.
Parent authors and advocates will talk about their journey.
Lectures on October 10, 11 and 12 at the Al Green Theatre, Miles Nadal, Toronto JCC and on October 14 at the Lonsdale Gallery.
Panel discussion on October 16 at the Al Green Theatre including several autistic people, parents and researchers.
Full information & tickets at http://www.taaproject.com/



October 17, 2006, in Detroit
Behavior Solutions for Adolescents with Severely Limiting Autism
Maria Wheeler: Adolescence combined with severely limiting autism presents a unique challenge for the effected individual, families, educators and therapists. In this session, we will explore age appropriate interventions for addressing behavioral concerns including aggression, refusal to work, stripping, self-stimulation, ineffective communication, offensive communication, echolalia, sexual behavior, seizure-related behaviors, wandering, non-compliance and other behaviors that commonly interfere with social success and learning. Please click for more details


October 18,
2006, in Detroit
Transitioning to Adulthood
Peter Gerhardt: Increasing attention is being paid to needs of learners with Autism Spectrum Disorder (ASD) as they enter adolescence and grow into adulthood. Where job placement was once considered desirable, now the goal is career development. Instead of residential placement, now there is talk of residential choices in support of quality of life. This workshop will provide an overview of this movement toward transition planning for competent adulthood. Social skills and sexuality will also be addressed in young adults with ASD. Please click for more details


October 25, 26, 27, 2006, in Metro
Toronto Convention Centre

Autism 2006 - Geneva Centre for Autism International Symposium

Complete program now available on our website.

Go to www.autism.net now to view this year's exciting conference program
including speakers from around the world.

The comprehensive agenda includes presentations on the latest intervention and research in autism and neurology, biomedical interventions, positive behavioural intervention, communication, social skills, sensory processing disorders, anger management, adolescents, adults/employment, first hand accounts, Aspergerís disorder, cognitive behaviour therapy, intensive behavioural intervention, OCD and much more. 

Don't miss this international exhibit hall, art gallery and remarkable opening ceremony featuring the talents of gifted individuals with ASD.


30 October-November 2, 2006, in Cape Town, South Africa
World Congress on Autism "Autism Safari - Exploring New Territories"
Please keep visiting website for updates

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BOOKS, ARTICLES, WEBSITES AND OTHER RESOURCES


BUILDING AN INCLUSIVE
and ACCESSIBLE Canada so everyone can belong and participate!
EndExclusion.ca is a short-term (June to November 2006) Canada-wide initiative or project designed to celebrate successes of people with disabilities. We are building towards a Forum (Meeting) in Ottawa on November 2, 2006

  • Sign on as a Partner - we welcome federal, provincial, territorial and local organizations.  The more partners involved in this initiative the more solidarity we will be able to demonstrate. 
  • Read and sign the Declaration that we will present to MPs on November 2 and... 
  • Submit your story or encourage others to do the same. Consider including a picture.   (Please take the time to encourage others to submit stories....we would like to be able to showcase experiences, struggles and accomplishments of hundreds of people!)

Publications by the National Autism Society (UK)
Advocacy and autism
Advocacy is a process of enabling people to express their views, to access information and services and to secure their rights. This guide outlines the different types of advocacy services available for people with autism.

Improving Commissioning Standards in Services for Children and Adults with Autism Spectrum Disorders
Produced by a working group of commissioners and autism-specific service providers in the North West, with the support of The National Autistic Society. This paper draws on consultation with colleagues in the North and on the work of the North West Autism Task Group (2003), NAS Guidance for Inspectors - CSCI (2005), Jones and Jordan (2001) and Robertson and Emerson, Lancaster University, 2006

Research into Autism Spectrum Disorders
Recent articles of specific interest to professionals working with children and/or adults with autism and Asperger syndrome and researchers working in the field of autistic spectrum disorders.

Training and other services for professionals
A guide to training and services provided by the NAS for professionals working with people with autism or Asperger syndrome and their families.

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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 perceptions, problems and success stories, if you think others might help or benefit.


Bridges Over Barriers
Something new is being pioneered in Ontario by six men who live with quite severe challenges of autism. As they do not speak with their voices, other people might assume that they have nothing to say—even that they do not think or feel. But they are very expressive, on many topics, supported by AAC technology (alternative and augmentative communication) and the presence of family and friends who believe in them. The idea of meeting regularly began with one of the men, who also proposes agenda topics and acts as host. Family members and friends just facilitate the dream in practical ways--and listen! The men gather in Guelph from all over southern Ontario, and even Michigan. The gatherings are so moving and powerful, it seemed good to share the idea with others.

The pioneers have a dream of “Bridges Over Barriers” as “a centre for friends and family who live with the challenges of autism to come together to share support, ideas and community. Bridges is the beginning of an idea for us to build on a small community of adults with autism who have been meeting a few times a year since January 2004. We have been developing our skills as communicators and sharing technology ideas and friendship.

“We want to extend this community of pioneers to include more people. We would like there to be more opportunities for others to benefit from our experience, and to encourage and train more people to support those of us with communication and movement disorders.”

A first newsletter has been published and we post it here. Click to read it in pdf format.
If you’d like to know more, please email ABC_andrew@hotmail.com


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