ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   15 December 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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Wishing everyone joy in the holiday season and best wishes for 2008!

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APPEAL FROM THE FRONT LINES IN ONTARIO

'I've just read the article on your Nov. 21 bulletin entitled "Panel trains first-responders in autism encounter".  I was just wondering if you know if this training has been offered or done with our Toronto police and emergency officers.  I think this is a must for our police and emergency people to be educated on.  People with mental disabilities may look normal from the outside but they may be mentally incapable of comprehending what's going on at times.  It would be so awful if they've been mistreated just because of ignorance.  I know that some can be violent but they should be treated with compassion.
 
I can relate to this just because I have a son who's 20 years old now and been diagnosed with PDD at 5 yrs. (autism - but high functioning) but our family's been able to look after him with no problem.  For a stranger to look at him, they won't be able to tell that he's autistic.  They most likely think that he's a bit odd - if not crazy when he gets into his moods when we're in public.  Especially if something has upset him, it takes a bit of time to calm him down.  But thank goodness he doesn't get violent but can be vocal.   But my family can't be with him all the time to protect him from strangers.  I would hate the thought of him being entangled with the law.
 
Thanks for your time and all the best in keeping us informed.'

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GENERAL ADULT AUTISM NEWS

Autistic children face holiday challenges
The holidays can create special challenges for children with autism and their families. Although changes in routines, new experiences, and special events can create opportunities for learning, they also can set the stage for behavior problems.
There are many things you can do in advance to help minimize problems and prepare for a happy holiday season......

Charlotte Moore describes Christmas with her two autistic children
(as part of The Times Christmas Appeal for the Treehouse educational charity).
An excerpt: "Autism is a social disability: parties, family gatherings, expressions of neighbourly goodwill, may be meaningless or overwhelming. Autists don’t see things from another’s standpoint, so giving pleasure to others through present-giving or a shared meal means little. The upheavals of the season – the house transformed by decorations, the influx of new possessions, the special food – will probably be unwelcome. Leo Kanner, who first defined autism in 1943, wrote of a strong desire for 'the preservation of sameness' as a key characteristic of the condition. To most autists, Christmas must seem like an outrageous assault on this sameness."

UN Assembly Urged To Designate April 2 World Autism Day

Missing protein may underlie autism: U.S. study
Autism and other brain disorders may be the result of a missing protein important for building communication networks in the brain. Researchers at the Massachusetts Institute of Technology have found that an enzyme called Cdk5 that instructs a synapse-building protein called CASK may be going awry, causing a breakdown in the formation of synapses.

Fever May Improve Behavior of Children With Autism Disorders

Children with autism spectrum disorders (ASD) may show improvements in behavior when they have a fever, a small study suggests. "I think this study means there is hope, because it means that the basic networks in the brain in autism appear to be intact," said senior investigator Dr. Andrew Zimmerman, a pediatric neurologist at the Kennedy Krieger Institute in Baltimore.


Understanding the science of autism
A story about the University of Washington Autism Center in diagnosis, treatment and research, as well as accommodations for students who have ASD.



High functioning versus low functioning autism - it's more complex than you think
Column by Donna Williams in The American Chronicle about the wide range of complex ways in which people may experience  autism spectrum disorders.


Your Child's Disorder May Be Yours, Too
As more youngsters than ever receive diagnoses of disorders — the number has tripled in the US since the early 1990s, to more than six million — many parents have come to recognize that their own behavior is symptomatic of those disorders, sometimes in a major, but more commonly, in a minor way. In effect, the diagnosis may spread from the child to other family members, forcing each to confront family frustrations and idiosyncrasies that they might prefer to have left unacknowledged. This New York Times story considers ASD as well as other disabilities.



An excerpt embedded in the article:
"But first, a more fundamental question: Do we even understand what today's chronic diseases are? It is beginning to appear that what we call autism may in fact be many illnesses that we've lumped together because those who are afflicted seem to behave similarly.
"Doctors base their diagnosis on behavioral symptoms, not on what caused those symptoms. Some scientists now refer to the condition as "autisms," acknowledging that we've yet to find a single, unifying biological mechanism, despite the identification, in some studies, of a handful of genes that may confer increased vulnerability."


Police learn about autism

Report of a workshop by Dennis Debbaudt in Brick, New Jersey, teaching law enforcement officials how to recognize and effectively communicate with people who have the developmental disorder.


Most programs for people with autism are geared toward children. But as these children age, the issue of how to help adults living with autism becomes much more clear. Maggie Rodriguez reports in this CBS video.


Adults With Autism

The story of Jeremy (20) who has Aspergers.
"His autism does play a part in his life, plays a big part, but it is not who he is," said his mother Robin. "He is someone who has dreams and aspirations, who has many skills, who has a kind heart, who likes to volunteer, likes to help people... that is who Jeremy is."


Disabled adults finding a new place
Family teaching homes aim to foster maximum independence, but some say the model is flawed. California's Department of Developmental Services has begun moving clients into duplexes such as this one in Cupertino and hiring two caregivers, usually a couple, to live next door. Known as a family teaching home, it's part of a national trend to integrate the developmentally disabled into communities.

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CANADIAN AUTISM NEWS



PROTECTING THE VULNERABLE: Who will care when the caregiver goes?
The Star features aging parents in Ontario who are taking care of autistic sons and daughters and fear their own mortality will put their children at risk.


Autism: Fighting for Funding

The story behind the roles of Senator Jim Munson and Ottawa parent Andrew Kavchak in advocating for a National Autism Strategy.
Read Government of Canada Response to Senate Committee's call for a National Autism Strategy
Read t
he Canadian Standing Senate Committee on Social Affairs report Pay Now or Pay Later: Autism Families in Crisis (English version)

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OF SPECIAL INTEREST IN WATERLOO REGION AND GUELPH-WELLINGTON----

COORDINATOR POSITION

Wednesdays 9am – 3:30pm
Orchard Park (Ignatius College), Guelph
Mature, flexible and kind individual needed to assist a small group of adults with autism to work and relax together, encouraging their gifts, their fellowship and their contribution to the Orchard Park community.
The focus has been on gardening and outdoor exploration, particularly during the summer months. In the fall and winter they have volunteered for land and farm tasks, but also welcome indoor forms of work and recreation too. Some gardening experience is an asset but the primary requisite is a sincere desire to help these adults grow and learn and to develop healthy relationships with one another and with the larger community.
Training opportunities will be provided as needed.
Please send resume with references to:
Moira Hollingsworth
Tel: 519-885-2683
Fax # 519-576-5816
Email: rm.hollingsworth@rogers.com

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OF SPECIAL INTEREST IN MISSISSAUGA: 2007 Survey of Community Needs

Do you live in Mississauga ? Are you a mother, father, brother, sister, guardian or case worker caring for a developmentally disabled family member 13 years of age or up?

If this is you, Opportunities Mississauga for 21 Plus invites you to take our 2007 Survey of Community Needs of Mississauga Youth and Adults with a Developmental Disability.

Here is a bit of background on our group. We are all volunteers. We are all caring for our adult developmentally disabled family members. When we came together seven years ago, we saw our loved ones reaching the age of 21, finishing school and facing a complete lack of opportunities to participate in meaningful day time, recreational, social and leisure activities out in the community. We conducted a survey of Mississauga families to learn about their needs, and worked with Community Living Mississauga to develop a successful joint application to the government. The Ministry of Community and Social Services now funds a day activity program that serves 146 adults with intellectual disabilities, five days a week.

Our current survey questions concern your needs for services like day programming, respite, and transportation. We particularly wish to understand your expectations of long-term residential care opportunities, since our members have conveyed this issue is key and requires direct attention. By responding to this survey, you will help us understand our community better, and help us take the first steps towards building a better one for our loved ones and for ourselves. Be assured that all information provided by you will remain confidential.

The survey takes about 15 minutes to complete. You may take it online by logging on to
http://www.om21.ca/
or if you have questions or want a survey mailed to your home - contact Anna Przychodzki by email: anna_przycho@yahoo.ca or by phone: 905-796-0266.  Please send us your survey by December 20, 2007

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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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Saturday, January 12, 2008, all-day,
with 7 half-day weekly workshops to follow
(Tuesday evenings or Wednesday afternoons)

Compassionate Practices: taking care of ourselves and each other
In Oshawa, led by Felicia Claire Jervis
Click on title for the brochure with full information


February 8-9, 2008 Edmonton, AB

Autism Awareness Centre Inc. presents

Dr Lucy Jane Miller PH.D, OTR: Sensory Processing Disorder: How Does It Affect Children with Autistic Spectrum Disorders?
Dr Rita Jordan BSc. MSc. MA. PhD. C.Psychol.: Understanding, Avoiding and Managing Behaviours in ASD and, Interventions in Autism Spectrum Disorders 

Click for conference details and to register...


March 10-12, 2008, in Delta BC
Changing the World One Person at a Time: The Canadian Experience
  • Share what’s been learned in Canada regarding the provision of
  • person-centred options that have been sustained over time
  • Provide inspiration, valuable start up knowledge and guidance to
  • individuals, agencies and systems beginning such work
  • Help organizations change from "fixed" service models to entirely
  • individualized supports
  • Explore the elements necessary for high quality personalized supports,
  • and the safeguards to ensure this occurs
Please click on title to reach website
Sponsored by Community Living
British Columbia, BC Association for Community
Living, Canadian Association for Community Living


April 3 & 4, 2008, in Ottawa
Autism Awareness Centre Presents Michelle Garcia Winner
Thinking About YOU Thinking About ME and Implementing Social Thinking Concepts
and Vocabulary into Our School and Home Day: A Day to Develop Team Creativity

Contact Victoria Harris for more information at vharris@shaw.ca
Telephone Toll Free 1-866-724-2224 or (780) 474-8355 Fax: (780) 477-8350

Register On-Line or download brochure at www.autismawarenesscentre.org


April 23-24, 2008
Stages of Autism: Adolescence and Beyond
2nd Biennial Conference
In Hamilton Convention Centre
Click for preliminary information including call for presentations


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


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

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BOOKS, JOURNALS, WEBSITES, PROGRAMS


Musicophilia: Tales of Music and the Brain by Oliver Sacks
(Knopf Publishing Group, October 2007) ISBN-13: 9781400040810
Sacks’s new book is a study of how music acts upon our heads and gets under our skin. Sacks also explores the power of music to move people with extreme neurological disabilities such as Parkinson’s and some forms of autism. Musicophilia, a New York Times bestseller, has been named one of the Best Books of 2007 by the Washington Post and the editors of Amazon.com
See also:  Sound effects: Oliver Sacks probes music’s mysterious influence on the brain


The Case for Autistic Enterocolitis
Dr Arthur Krigsman's Recent Northwest Lecture Added to Autism.com
Arthur Krigsman, M.D. of Thoughtful House for Children visited the Pacific Northwest last weekend presenting lectures about Autisitic Enterocolitis in Seattle and Portland. A video recording of the event - rendered in both high band (DSL, cable) and low band (dial-up) - is now available online for free on ARI's web site. 
To view the video: Go to www.autism.com - the new video link is located on the far right column on the homepage. 
Dr Krigsman has extensive experience in the evaluation and treatment of gastrointestinal pathology (now known as autistic enterocolitis) common in children with autism spectrum disorders (ASD), and has detailed the symtomatology and endoscopic/histopathologic character of this disease in this unique, poorly understood group of children. His findings have been presented at scientific and lay meetings in the United States and Canada


TAP: The Autism Perspective is Going Green!

OAARSN welcomed the first appearance of TAP nearly three years ago. The magazine previously available only in print and on subscription, is now going to be online. Click on the title for the announcement, how to get on the distribution list, and reach the current and past issues of TAP.
TAP, The Autism Perspective Magazine, is "founded upon the passionate philosophy that those living with and treating autism spectrum disorders and  pervasive development disorders should have a single resource that  presents the full perspective of options for therapies, new understanding, treatments, and services.  Our goal is to enrich and enhance the lives of those living with autism and give them new sources of hope.
"This world-class publication will bring families balanced, informative, and educational articles from across the US and the world.  Within the pages of our magazine, also included are legislative updates, advocacy advice, personal accounts and inspirational stories to encourage and inspire us and make every family feel a little less alone in its struggles, hopes and dreams."


Autism Heroes: Portraits of Families Meeting the Challenge
By Barbara Firestone, Ph.D. Forewords by Teddi Cole and Gary Cole and Catherine Lord, Ph.D.
Photographs by Joe Buissink . Jessica Kingsley Publishers .
Hardback, ISBN: 9781843108375, 240pp, November 2007, £19.99, $34.95
"Few have the combination of compassion, rigorous knowledge, passion for the field, and accomplishments in helping literally thousands of children with autism spectrum disorders as does Barbara Firestone. She is also an extraordinary listener, and a great observer of people, making her perspectives and collection of family stories coupled with Joe Buissink's photography extremely rich, inspiring, and instructive." Michael O'Hanlon, Senior Fellow, Brookings Institution, Parent of a Child with an Autism Spectrum Disorder
Intimate, bold, and inspiring, Dr. Barbara Firestone's Autism Heroes provides a compelling and sensitive account of the experiences of 38 families from different walks of life confronting the challenges of autism spectrum disorders with courage, tenacity and love. With empathy and expertise gained from her three decades of leadership of The Help Group and commitment to children with special needs, Dr. Firestone engages the families in powerful and deeply affecting conversations about their lives. The family narratives are set against the backdrops of her insightful essays about the dignity, hope, opportunity and love that are so fundamentally important to all families living with autism.
The families offer their experiences openly and honestly, sharing their challenges, triumphs, and hopes. Their candor helps demystify and destigmatize autism and embraces other parents just beginning or already on the journey. Their reflections chart the course through the many stages of coping with autism and seeking solutions for their children, and they offer a lifeline of support, insight and encouragement and hope.

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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.

Please write to OAARSN at gbloomfi@uoguelph.ca


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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