ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN


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OAARSN NEWS BULLETIN
 
6 June 2006


AUTISM NEWS IN ONTARIO

SPECIAL ANNOUNCEMENTS BY AUTISM SOCIETY ONTARIO

It's not too late to register for
Autism Society Ontario's "Kids Grow Up" conference with a focus on Teens and Adults with Autism Spectrum Disorder.

Dates - June 16 & 17, 2006 in Toronto at The Grand Hotel.
Keynote speakers are Dr. Peter Szatmari (Friday) and Dr. Jeanette Holden (Saturday). Panelists from various ASD service providers and ASD self advocates will also be presenting. 
More detailed conference information can be found at: http://www.autismsociety.on.ca/pdfs/ASOConferenceInfo2006.pdf
Click here for registration form


Autism Society Ontario has just published a manual with a focus on teens and adults with ASD:
Living with ASD: Adolescence and Beyond: Helping people on the autism spectrum navigate to and through adulthood.
Resource information, tips and stories are written by parents, professionals and persons on the autism spectrum.

Contents include:
Autism Spectrum Disorders: an overview
FAQ about getting a diagnosis of ASD in Adulthood
Person-Centred Planning
Dual Diagnosis: developmental disability and mental health concerns
Epilepsy in ASD
Psychosocial issues in "more able" adolescents and adults with ASD
Social Skills
Sexuality and Sex Education
Safety in the Community
Financial Planning
Planning for Success in Post-Secondary Educaiton
Making Employment Work for All Abliities
Employment for People with Asperger Syndrome
Accessing Recreational and Leisure Supports
A Unique Day Activity Program (Mississauga)
Cooking for Success
Woodview Manor
Living Options
Personal Reflections by People with ASD
Personal Reflections from Family Members
Advertisements by persons with ASD who have their own micro-enterprises

To obtain a copy (for $30), visit ASO-Provincial’s website at: www.autismsociety.on.ca 

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GENERAL AUTISM NEWS

Siblings Coping with Autism
Among all the recent media coverage of autism, ABC News has focused on the brothers and sisters of autistic children whose lives are also profoundly affected by the disorder. 
"There is no one I know who is more vulnerable to me than my brother," said writer Judy Karasik, who has lived with autism since her childhood, as her 57-year-old brother has the disorder. They've written an illustrated book, "The Ride Together: A Brother and Sister's Memoir of Autism in the Family," about their childhood, and the story is not always sweet. He had bigger needs than the rest of us," said Karasik. "And you can say it made me a better person, but you don't always want to be a better person, and that's the truth."
Your childhood is turned on end when your sibling is autistic, as parents become absorbed in the life of that child whose needs can put severe limits on family activities.
"Echoes of Autism: My Brother's Keeper" was to air Tuesday, June 6th, on Nightline at 11:30 p.m. Eastern Time in most areas.  

Theme Issue on Autism and Autism Spectrum Disorders
Archives of Pediatrics - USA
Archives of Pediatrics & Adolescent Medicine will publish a special theme issue in April 2007 on autism spectrum disorders including autism to foster a better understanding among professionals.


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NEW IDEAS AND INITIATIVES

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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IMPORTANT SPECIAL ISSUES FOR ADULTS IN ONTARIO

We urge you to read the following report and respond to MCSS via the feedback page very soon. The report is the culmination of the recent process of transforming developmental services in Ontario, and may become the "blueprint" for services and funding in the next 25 years.

Opportunities and Action: Transforming Supports in Ontario for People Who Have a Developmental Disability
is the Ontario government's response to the challenges facing our developmental services system.  The paper outlines key directions to achieve the Province's vision of an inclusive Ontario for people with a developmental disability, and is the product of 18 months of consultation with people who have a developmental disability, their families, community agencies, academics and clinical experts.  The paper also includes a series of questions to generate thought on how best to implement changes to the system of supports in Ontario.

Opportunities and Action is now available for public comment so that all Ontarians can contribute to shaping the future of a fair, accessible and sustainable developmental services system for Ontario.  Comments may be submitted via a feedback page, e-mail, fax or mail until June 30, 2006.  The government will also be holding focus groups with families to encourage further discussion and obtain their input about how to implement changes to the system. 

The input received from the consultation will guide a blueprint for the future of developmental services in Ontario:  one that is focused on long-term solutions to help individuals with a developmental disability realize their potential and fully participate in our communities.

Read the Full Report
Read the Plain Language Version
Read Executive Summary
Feedback Page


New Study Demonstrates Impact of Making Disability Supports Personalized

The Individualized Funding Coalition for Ontario has released a new study on the role of individualized funding in Ontario. Moving Toward Citizenship is a comprehensive study of how four projects across Ontario are providing supports to people with disabilities in a unique and personalized fashion. Researchers studied 130 individuals and their families who receive individualized funding for their support needs. Individualized funding is based on a support plan developed by the person and their network.....

Principal Investigator John Lord said that the study showed that families who use this innovative approach tend to be highly involved. “At all sites, we also found a deep commitment to citizenship and choice among staff and families,” said Lord.  In addition to strong values and organizational support, the researchers found that there were three things that were vital to the success of individualized funding; the facilitator that worked closely with individuals and their families, networks and relationships that assisted the person to live in the community, and effective workers that enabled people to build creative supports.

Please click on title to read more about the research
Click on this link to reach the full report: Moving Toward Citizenship
Click to reach more articles on John Lord's website
Check out all the resources of the IFCO website


Locating Technology Project

A collaborative project of the School of Rehabilitation Science at McMaster University and the Ministry of Community and Social Services (MCSS) is related to gaining a better understanding of the complex realities related to using locating technology with citizens who are at risk of wandering and subsequently becoming lost.  It is being undertaken through Accessibly Yours (AY), the School’s consultation arm that aims to enhance environments for the purpose of facilitating individuals in their search for living well and participating in their communities.  

Research is focused on determining the relative merits of various technologies that may improve the safety and security of individuals who live with problems in communication and/or cognitive function, such as Alzheimer’s disease, Autism Spectrum Disorders or other developmental disabilities which cause them to wander. The project should provide families and caregivers with knowledge and education concerning the different approaches that are available and their relative merits and application to individual circumstances.

Research is divided into two phases.  The first phase involved a technical evaluation and field testing of all locating technologies that were offered for study. The outcomes of this testing provided the data required to decide which technologies were best suited to the target populations. Phase 2 involves ‘Consumer Trials’ and a ‘Consumer Panel’ where the technologies are presented to the consumers to receive feedback with respect to the strengths and weaknesses of the technologies.  Both portions of Phase 2 aim to determine and recommend the necessary criteria of locating devices as they apply to the different populations with known wandering behaviour.  Phase 2 will also consolidate the project findings and provide specific recommendations concerning the technologies in the trial. 

The research team is now recruiting consumers to participate in the Consumer Panel.  There will be a consumer panel in Hamilton on June 26, 2006.  If you have any questions, please feel free to contact Nicole Grochowina at (905) 525-9140 extension 26896. Please click for a colour poster about the Consumer Panel


Project Lifesaver (Ontario) advises us of a new website at http://www.projectlifesaver.ca/

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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



June 2006, Monday evenings, in Pickering
Towards a Culture of Gentleness
a four part introduction to gentle and compassionate caregiving practices
presented by Felicia Jervis
-Understanding the "language of pain"
-Healing the pain
-Safe from harm
-Taking care of the caregivers
For parents, family members, friends, caregiving companions, students, educators, service providers and mental health professionals.
Click for brochure and contact details


Thurs. 
June 22, 2006
SUPPORT APPROACHES & COMMUNICATION STRATEGIES
Day workshop aimed to assist service providers in supporting Adults living with Autism Spectrum Disorder and other Developmental Disabilities. See also June 22.
Groves Hospital in Fergus
Time:  9am  to 4:00 pm
Cost:  No cost
Click for brochure and map in PDF


June 9th, 2006
Kerry’s Place Autism Services is pleased to host
Dr. B. Duncan McKinlay
& THE CPRI BRAKE SHOP
Service for Tourette Syndrome & Associated Disorders
“For When It’s Hard to Stop”

9 a.m. – 12 p.m.
St. Peter Catholic School
150 Westwood Rd., Guelph
There is a $10.00 fee
Click on title for more


June 16-17, 2006, in Toronto
Autism Society Ontario: 2006 Annual Conference
"Kids Grow Up": Teens and Adults on the Autism Spectrum

Click for program and registration details


Thursday June 22, 2006
SUPPORT APPROACHES & COMMUNICATION STRATEGIES
Day workshop series aimed to assist service providers in supporting Adults living with Autism Spectrum Disorder and other Developmental Disabilities. See also June 1.
Groves Hospital in Fergus
Time:  9am  to 4:00 pm
Cost:  No cost
Click for brochure and map in PDF


June 26-30, 2005

Autism Network International presents AUTREAT 2006
Autreat is a retreat-style conference run by autistic people, for autistic people and our friends and families. It is an opportunity for autistic people and those with related developmental differences, our friends and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment.
Autreat focuses on positive living with autism, NOT on causes, cures, or ways to make us more normal. We have an exciting lineup of presentations on a variety of subjects of interest to the Autistic community, including communication, relationships, daily living aids, travel, effects of prejudice, and more. Autreat has been approved to offer Continuing Education Units through the Center on Human Policy at Syracuse University.
Autreat 2006 will take place on June 26-30 at a small university campus in the Philadelphia, Pennsylvania, area. The campus has plenty of open space for walking, recreation, and enjoying the outdoors. Lodging is in a residence hall with two to four people per room. Registration includes a supervised activity program for children and teens under 18. For fee information, registration form, a list of workshops, and further autreat information, check out ANI's website at: http://www.ani.ac


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.
There will be conference sessions and hands-on workshops
aimed at both new and veteran FC users and facilitators.
Please check out the flyer by clicking on this link.

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SPECIAL EARLY ANNOUNCEMENTS


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 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

Imagine Canada has released the new results of the Canada Survey of Giving, Volunteering and Participating (CSGVP)
Conducted in 2004 by Statistics Canada, the CSGVP includes new information about how Canadians support one another and their communities. The survey reveals higher levels and amounts of giving, volunteering and participating among Canadians than were found in the previous survey. It also reveals key characteristics that distinguish Canadians who engage in these activities more frequently than others. To find out more, visit the Imagine Canada website at: http://www.givingandvolunteering.ca/pdf/CSGVP_Highlights_2004_en.pdf for details.


D.O.O.R. 2 Adulthood Project

“D.O.O.R. 2 Adulthood” (Disability Ontario Online Resource) is a website that was developed for youth with disabilities who live in Ontario.  It is about making the transition to adult life as a person with a disability.

 

People with disabilities, parents and service providers joined together to plan, develop and evaluate this online resource.  The goal is to make the transition to adult life for youth with disabilities easier. 

 

The website includes:

·        A database of resources and services related to transition in Ontario

·        Stories and blogs about transition to adulthood

·        An E-chat where people can talk and share information, experiences and ideas about making a smooth transition

·        An “Ask a Mentor” link to youth who have experienced transition

 

We are always looking for new information about transition services and resources for our database. Please click on the following link to add an entry:  http://www.ablelink.org/public/transition/search.htm

You will see the word Add your service or resource to the D2A database on the left side of the page in the blue sidebar. Click this link for the database template


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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.

If you wish, we will not print 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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