ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   20 August 2007


OAARSN offers information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

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GENERAL AUTISM NEWS


Autism sufferers coming out of the shadows
A story about the University of New Hampshire's ninth annual Autism Summer Institute. The four-day conference, beginning tomorrow at Holloway Commons, is open to the public and will focus subjects such as how to help children with autism spectrum disorder do better in school and how people with autism can become more independent and improve the quality of their lives. The article includes excerpts of interviews with Donna Williams and others who were not diagnose until well into their adult years.


Raising Adam: when an autistic child grows up
The story of a Massachusetts man and his family. "Adam's 27 now, and (his mother) Nancy finds herself stepping toward the most major decision of her life. For parents with severely handicapped children, there usually comes a time where they've got to put their faith in another caregiver — when their "kids" have got to move to another living situation for everyone's sanity. Adam has to move on so that Nancy herself can finally live. He is so ingrained in her daily existence that she has little separation from him; and he is an integral part of his sister Sarah's and father Rich's lives as well."

Under suspicion

Researchers now believe that autism can be caused by genes in combination with environmental triggers. The question is, what are those triggers? This review in The Boston Globe quotes Dr Martha Herbert, a Harvard neuroscientist and Massachusetts General Hospital neurologist, as noting that "any major article or proposal concerning the causes of autism is coming to be considered incomplete if it doesn't talk about a potential role of environmental factors." Herbert also argues that environmental exposures might not only help trigger autism, they may also continue to influence an autistic child's health and mental state, creating "striking good hair days and bad hair days." The mechanism may involve the immune system or brain chemistry or the body's metabolism -- or all three.


Is anorexia the female Asperger’s?
Professor Janet Treasure explains her controversial theory that eating disorders may be genetic and express some of the same symptoms as Asperger's. As Professor of Psychiatry at King’s College, London, and head of the Eating Disorders Unit at the South London and Maudsley NHS Trust, she is seeking participants for a variety of research projects.


The Puzzle of Hidden Ability

Sharon Begley's column in NewsWeek discusses the futility of measuring autistic childen's intelligence in standard tests that require the child to listen and respond to spoken questions. Not surprisingly, fully three quarters of autistics are classified as having below-normal intelligence, with many deemed mentally retarded. "If we label these children as below-normal in intelligence, that is how they're treated," says Professor Laurent Mottron of Rivière-des-Prairies Hospital in Montreal, who leads research to develop an alternative intelligence test.

Researchers: New understanding of autism is near
Newsday report of findings by a research team that spontaneous mutations specific to autism occur with a relative degree of frequency in the human genome. These random strikes are technically known as copy number variants, or CNVs. The Cold Spring Harbor team defines these mutating hits as a major cause of autism.


our concerns and dreams are global! Just one example--from Southeast Asia....
Conference To Establish Autism Friendly Society
Smarter Brunei will be organising its 5th National Conference on Autism, entitled "Strategies toward Advocating an Autism Friendly Society". It aims to identify the type of services required and how the relevant authorities can take lead roles in establishing an autism friendly society, as well as to examine the steps required to establish support services in an autism friendly society.


Autistic adults get on-the-job experience
New Delaware program helps with skills for daily living and work. Productive Opportunities for Work and Recreation (POW&R) is viewed as a gateway to society for adults with autism spectrum disorders. Research before setting up this program found that 90 percent of the costs associated with autism care are incurred after the age of 21. At that point, the amount of state money available to autistic adults drops significantly. Much support comes from parent and family volunteers. Another Delaware initiative is Practice Without Pressure, which works with children and adults in medical settings so that they won't need restraint in order to give blood or undergo dental work.


Science Podcast: Toxins in the Food Web, Autism and the Synapse, Memory Suppression, and More [Listen to MP3]  >
Unexpected organic pollutants in mammalian and human food chains; how autism's roots may lie at the synapse; new insights on how the brain blocks out bad memories; and more. (26 minutes)
[Transcript of this podcast]


How Your Brain Allows You to Walk In Another's Shoes

The article in Science Journal begins:
"In subtle patterns of brain cells, researchers are exploring empathy -- an essential intuition that helps us understand our fellow human beings.
These unusual brain circuits are mirrors in the mind that reflect the actions and intentions of others as if they were our own, new research has revealed. Scientists call them mirror neurons. They allow us to feel a loved one's pain, or suffer the pangs of appetite when we hear someone crunch into an apple. They are a reason we are moved by the images of art and can feel the appeal of characters in a book."....
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PROJECTS AND STUDIES


1. Two research studies have been approved by the Queen's University Ethics Board.
Participation by families, children and/or adults is invited. Click for details

More studies will begin in September, when we will let you know more.

2. Research Feature: Applying Precision Teaching to Language Skills Acquisition
Marlene Cohen and her colleagues....at the Douglass Developmental Disabilities Center at Rutgers University in New Jersey are hoping that their OAR-funded study will help adults with autism communicate better through the use
of Precision Teaching. Click on title for more.

3. SMART Home technology could make homes for people with special needs better, and as good as they can be--individually tailored to individual tastes and sensory needs, protecting privacy, promoting self-help and dignity,
environmentally efficient and sustainable.
Some OAARSN members are interested in discussing the relevance to Ontario. Perhaps the Ministry announcement of support for creative housing options gives us an opportunity to propose these related ideas (see below).
Please let us know if you are interested in a discussion.

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ANNOUNCEMENTS OF ONTARIO OPPORTUNITIES

Ontario Ministry of Community and Social Services
"Spotlight on Transformation" bulletin for August 2007 is now available online.

Please note the focus of this bulletin on:
“More residential options for community living”
“A goal of Ontario’s developmental services transformation is to provide adults with a developmental disability with more residential options so they can live more independently within their communities. During last year’s public consultation, we heard examples of creative living arrangements that are working well and we listened to suggestions about innovative residential models and partnerships that could be explored.
“Eligible individuals or their families, together with a service provider, can develop a proposal for an innovative residential model for their community. The proposal must be submitted to their local regional office of the ministry for consideration for funding.”
Click here to reach both Word and PDF formats together with links to earlier bulletins.
 
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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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Weaving the Ties That Bind: online course on facilitating social support networks
PLAN Institute for Caring Citizenship offers online course in October 2007
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.
Self-paced--approx 20-25 hours.

Click for more information
Click here to register


Wednesday, August 22, 20071:30pm–4pm
A Community for All…Share Your Vision!
A forum for people with disability experience

Training Room, 2nd Floor
Kitchener City Hall
Everyone is included.  Human rights are honoured.  All are valued, have access and are treated with dignity.  Each can participate and contribute.
RSVP by Wednesday, August 15, to Susan Mainland at 519 579-1096 ext. 3005 or email admin@waterlooregion.org
Sign language interpreters are available upon request.  Let us know what accommodations can be made to make it easier for you to participate. 
Presented by the Disabilities and Human Rights Planning Group with assistance from the Social Planning Council of Kitchener-Waterloo/ Community Information Centre of Waterloo Region.
Appreciation goes out to the City of Kitchener for providing space for the community forum.


Thursday, August 23, 7pm, in Guelph

Old Navy Back to School Fashion Show
Benefit for Autism Ontario Wellington
Click for flyer


31 August, 1 & 2 September 2007, in Oslo, Norway

‘A WORLD OF POSSIBILITIES’
8th International Congress Autism Europe
Abstract submission, registration and further Congress information:
http://www.autismcongressoslo.org

E-mail: president@autismeurope.org
Do not miss this opportunity to contribute to take part in ‘a World of Possibilities’ for people with autism and their families, view the 4th International Art Exhibition of Persons with Autism, and to visit Oslo and its charming surroundings.


CBC Passionate Eye Documentary on Using Comedy to Fight Mental Illness and Stigma
Airs nationally on August 30 at
9 p.m. On CBC’s Doc Zone

Cracking Up is a life-affirming documentary about people with mental illness who embark on a quirky quest to become stand up comics. The film follows 11 courageous people who suffer from mental illness as they pursue a year of stand up comedy. Part fun and part therapy, the course, entitled Stand Up For Mental Health is the brainchild of Vancouver counselor, stand-up comic, and author of The Happy Neurotic: How Fear and Angst Can Lead To Happiness and Success David Granirer. “It’s like ‘The Full Monty’ except people want us to keep our clothes on”, he says.
Doing stand-up comedy has had an amazing effect on the people in the course. For the first time in their lives, they have embraced the word crazy, and learned to laugh at their mental illness – and their audiences are laughing right along with them.  They have discovered a talent they never dreamt they had.
For more information http://www.standupformentalhealth.com

September 7, 2007, 9:30am-5pm, in Vaughan
INDIVIDUALIZED FUNDING: A CAUTIONARY TALE FROM AROUND THE GLOBE
Join John O'Brien as he shares with members of IFCO what is working well; what is not and what to watch for as we continue our work to make Individualized Funding in Ontario a reality!  We hope this meeting will recharge your energy as we head into a Provincial Election in October, and help move Individualized Funding forward in Ontario! We have asked John to help us determine what to advocate for during the election. Costs $20.00 per person (lunch will be included) and subsidies are available. If you are not yet a member of IFCO, please add $15 for membership to your cheque for registration.
Click for more information and how to register



September 8th, 2007, 9:30am-5pm
, in Vaughan
SPEND A DAY WITH JOHN O'BRIEN
Thinking about the future with COURAGE
Location: City of Vaughan Police Community Room, 2700 Rutherford Rd.  
This exciting one-day event is intended for family members and people with developmental disabilities and their friends to explore their ideas about the future.  John has a gift for provoking thought and action in families about what really matters. Families from all over the world say that hearing him speak was very helpful in shaping their vision of the future.
The morning will be dedicated to having John share the stories he has about facing the future with courage. The afternoon will be focused on dialogue in small and large groups around some of the themes that arise in the morning. There will also be stories from individuals and families who have done courageous things. These stories will stimulate your own thoughts and dreams about what is possible and what are some of your next steps.
Click for more information and registration form


September 14, 2007
, 9:30am–3:30pm, in London
SENSORY EXPERIENCE, RESPONSE & INTERVENTION
Offered by Regional Support Associates
Individuals with intellectual disabilities may experience sensory sensitivities or processing problems, which can impact on behaviour. This workshop will provide information about identifying and investigating sensory experiences and strategies to handle sensory challenges.
Cost: $50.00  Click for details and registration form
See info on all RSA workshops



September 15, 2007 at Victoria Park in London
Walk A Mile in My Shoes
A Community Outreach Event specifically intended to help people understand difficulties faced by those with differing abilities and to celebrate the diversity of our community.   The walk will be led by Bill Hiltz assisted by his support team, and participants will be asked to truly walk in his shoes by walking behind him all the way.  Bill faces many challenges and strongly advocates for a life full of community and true inclusion for everyone.  Bill would like other people to be able to experience what life is like when a person faces differing challenges.
Participants will be asked to pair up with someone and each couple will randomly choose the challenge that they will live with for the walk. Funds will be directed to Reach for the Rainbow; an organization that  is committed to promoting an environment where children with disabilities can mature with their peers; one which encourages awareness and compassion and allows people with disabilities to discover their full potential. Their commitment is to belonging; to ability, not disability; to inclusion, not segregation.
Registration fee is a minimum pledge of $10.00 begins at 10:15, festivities at 11:00 and the walk begins at 12:00 noon.  Refreshments will provided for participants. Come one, come all. Tell your friends.  This promises to be a day of sharing new experiences; laughter; music; good food and great company!
More details and contact information are being posted on the website: http://inmyshoe.ca/


September 27 & 28, 2007, 9:30am–3:30pm, in London
AIMING HIGHER FOR PEOPLE WITH HIGHER NEEDS!
Offered by Regional Support Associates
People with higher developmental needs (severe disabilities) make up a smaller portion of those who receive support in our field, yet are often those who demand the lion’s share of resources. This session will seek to help caregivers Aim Higher with respect to the famed “Three ‘S’s” of support for the person with higher needs. Discussion will centre on understanding what constitutes higher needs, tips for helping people move toward independence, providing an enhanced environment, and avoiding potential difficulties.
Cost: $100.00  Click for more and how to register
See info on all RSA workshops


September 29-October 2, 2007, in Kitchener
A Comprehensive Biomedical Treatment Approach
Conference for Autism, PDD, AD(H)D, & Behavior Disorders
Offered by the Great Plains Laboratory
For parents, care givers, educators, and practitioners. The goal is to improve the health and well being of individuals using integrative medicine and, in particular, biomedical treatment options.
An excellent opportunity for those seeking evidence to support the use of various biomedical treatment options.  We will be discussing the role of nutritional deficiencies and supplements, special dietary interventions, food allergies, heavy metal toxins, enzyme deficiencies, inborn errors of metabolism, immune deficiencies, the role of micro-organisms in the gastrointestinal tract and more.  In addition, several parents will be presenting their very different journeys of the treatments that helped their children recover. 
Physician training is offered on Monday, October 1--for licensed physicians and practitioners only. The prerequisite for this training is day 1 and 2 of this conference or other biomedical training. All practitioners are encouraged to participate in the entire conference.


October 12, 2007, 9:30am–3:30pm, in Woodstock
PROMOTING COMMUNICATION: A Speech-Language Pathologist Speaks Up on Every Day Encounters
PRESENTER: Aren Hutton, BA (Hons.), M. Health Sc., S-LP (C), Speech Pathologist
Offered by Regional Support Associates
Communication is the base of human interactions. Often, people with intellectual disabilities feel isolated due to their communication deficits. During this workshop you will learn how to identify your client’s level of communication in addition to some tips to encourage positive interactions during every day tasks.
Cost: $50.00  Click for flyer and to register
See info on all RSA workshops



October 12-13, 2007, In Edmonton
AUTCOM's Annual Conference goes International in 2007:
Living Life to the Fullest with Autism: A celebration of ability, acceptance and understanding of autism for individuals on the autism spectrum, families and professionals

Keynote Speakers: Estee Klar-Wolfond: The Selling of Autism - How we can change language and referencing into a more effective future for accommodations for autistic people; Sharisa Kochmeister: The Doors are Wide Open! - Effective communication set me free; Gail Gillingham Wylie and Lincoln Grigsby: Stepping in the World of Quantum Physics - Reducing anxiety through the SCIO. "One of the most inspiring and galvanizing events I've experienced!!" The Autism National Committee (AUTCOM)! is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches.
Contact  Gail Gillingham at exgr@telus.net
http://www.autcom.org/



October 26, 2007,  in Waterloo
3rd Annual “Learning Outside the Box” conference
Our topic this year is ASD with Marg Spoelstra and Leslie Broun.
Watch for more details to be posted during August.



November 15-16, 2007, in Trenton
Advocates for Community Education (A.C.E.)
4th Annual Self-Advocates Conference
Keynote Speaker: Dave Hingsburger
Click for full details
Contact: Angela Clarke, Outcome Support Facilitator
phone 613.475.5557
fax   613.475.9854

email aclarke@communitylivingcampbellford.com

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BOOKS AND OTHER RESOURCES

Special book offer by National Autistic Society (UK)
"To celebrate our 45th anniversary, we are delighted to offer you generous discounts on some of our titles for 45 days."



Profile of a Canadian adult....

Severe Autism, Denied Support: Struggling to Survive in the Mainstream
, by Leonard Jayson and Marla Comm. Trafford Publishing, 2007. Paperback: 284 pp. ISBN-10: 1425116213 ISBN-13: 978-1425116217

"At age 3, Marla Comm was professionally diagnosed with autism but felt to have intellectual potential. Both parents had socially-conformist values, so that Marla's anti-social behavior was unacceptable. Verbally abused by her parents, she was disciplined to become a normal child. It was never to be; her rigid, dysfunctional personality was not susceptible to change.
"Now aged 50, Marla's lack of social feeling, rigid routines, problematic language, poor imagination, inflexibility, repetitive tendencies, and ritualistic behaviors - are lifelong traits consistent with autism. Anxiety, one of her most debilitating symptoms, has left her unable to achieve conscious relaxation or put aside life's inevitable problems. Daily chores frustrate her; however, it is nothing in comparison to the anger and self-mutilation she suffers when preparing meals in the kitchen.
Montreal is totally wrong for Marla. Years of struggling in the mainstream, with little or no support, have resulted in a condition of burnout, symptomatic of mental and physical exhaustion. Her personality complex with multiple co-morbidities in Montreal's environment worsens her misery by failing to meet her needs for affordable healthful food, human civility, supportive psychiatry, and adequate social services.
Inclement weather - half the year - prevents daily exercise. For Marla, it means countless days of suffering that only a loss of consciousness can relieve: call it a daytime oblivion of deep sleep, made possible with cheap wine and knock-out pills.
Gifted with a keen, long-term memory and intent on learning more about her neurological disorders, she has done extensive reading, in bits-and-pieces, over the years.
The reader will experience the life story of a highly intelligent autistic woman, consumed with dysfunctional behavior; the very same Marla who - in the next breath - can discuss with professional expertise the nuances of her mental disorders."


Pathways to Inclusion: Building a New Story with People and Communities

by John Lord and Peggy Hutchison

Captus Press, ISBN 978-1-55322-165-4 (2007 Forthcoming)
Approx. 270 pages, 500 g, 6 X 9, $29.50 (US$26.75)
Read more from the publisher

An examination of various perspectives on disability that provide insightful discussion on the current need for social innovation to move vulnerable citizens from areas of exclusion to social inclusion.

Pathways to Inclusion offers a straightforward approach to addressing the organizational strategies that have been used in the past and highlighting areas for change. Human-services organizations are examined, pinpointing common characteristics that have led to improved quality of life for the disabled.

Highlights of the book include:
• a discussion of discriminatory social policy,
• characteristics of pathways to inclusion, and
• an explanation on the need for social innovation.

Well-researched, with clear dialogue, and interspersed with insightful anecdotes, Pathways to Inclusion is designed to inspire change within both human-services personnel and the greater community.

This text should be an invaluable resource to educators, advocates and practitioners in the fields of Disability studies and human services.

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING PERCEPTIONS AND 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.

The Perennial Morning of an Autistic
(Brian Henson copyright)
The early years of an autistic person are analogous to a morning with a beautiful red sky.
To that child, the splendor is there, but to others who have been culturally conditioned,
the red sky is taken as a warning
of dire thing to come.
Why treat the beauty of the morning as a premonition, when the premonition, itself is just
that--a premonition--based on what others (often with no knowledge of the future) have said?
That is the intended message in the attached picture.

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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.


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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