ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   23 March 2008


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, MAINLY ABOUT ADULT ISSUES

UN declares World Autism Day (April 2) and is urged to support World Autism Strategy

The first ever World Autism Awareness Day has been declared by the United Nations General Assembly in New York. The idea was promoted by the State of Qatar who worked hard to make World Autism Day a reality - this historic day will take place on Wednesday 2nd April 2008.
Autism campaigners around the globe have welcomed the United Nations World Autism Awareness Day as it is an ideal opportunity to lobby world leaders on providing public services in education, health, specialist speech therapy and respite care for all people with autism and Asperger’s Syndrome, it also provides a platform for people to raise funds for autism organisations and parents groups in every country and to organise awareness raising events.
In the United Kingdom campaigners are calling on Britain’s Prime Minister Gordon Brown to make a statement on autism on World Autism Awareness Day. Mr Brown is being urged to support a national strategy on autism in the United Kingdom and a 10 year plan on autism and Asperger’s Syndrome.
Ivan Corea, Head of the Autism Awareness Campaign UK said: ‘I congratulate the United Nations Secretary-General Ban Ki-Moon, the United Nations General Assembly and the state of Qatar for spearheading this - this is history in the making, World Autism Day will focus attention onto the needs of 60 million people with autism around the world - I appeal to UN Secretary-
General Ban Ki-Moon and United Nations agencies such as UNICEF and the UNDP to reach out to so many families with autism below the poverty line. In the Third World, children with autism and Asperger’s Syndrome are struggling without the basic human right to an education, to health, specialist speech therapy and respire care. I call upon the UN Secretary-General to organise a UN Conference on Autism in 2009 and connect with world leaders on the subject of Autism and Public Services. The Autism Awareness Campaign UK is urging the United Nations to launch a World Autism Strategy. People with autism and Asperger’s Syndrome around the world desperately need help. Due to reasons of culture some children with autism are kept at home, sometimes autism is also confused with mental illness - every child with autism and Asperger’s Syndrome deserves a world class education - some are not receiving an education at all.’



AutismConnects
AutismConnects has recently developed an interactive Service Map allowing individuals and service providers to find available ASD services and information.
View promotional poster. [HTML] [PDF]

AutismConnects invites people with ASDs, their families and friends, educators, therapists, service providers, organizations, researchers, legislators and volunteers – anyone with an interest in autism and a desire to improve the health and quality of life of people with ASDs – to become a member.
View promotional poster. [HTML] [PDF]

Thanks to Autism Societ Canada for hosting these posters.


Campaign to end the isolation of thousands of adults with autism
The National Autistic Society (UK) holds a Newcastle launch of its new I Exist campaign, its relevance shown through a story about Chris who has Aspergers.


An adult with autism crusades, adjusts
The story of
24-year-old Kelly Londenberg, for whom it was a long journey from the quirky behavior of her childhood to finally being labeled at age 18 with Asperger's syndrome.


Colleges working to help autistic students adjust
Colleges are setting up mentoring programs to help students with the disorder better adjust to campus life, setting up peer mentoring programs, having one-on-one interventions and working with housing officials, campus security and professors to help them understand why some students might seem quirky, rude or out of place.  A story in the Detroit Free Press.


‘Better and more education for everyone about autism and Asperger’s is a good place to start’
How does it feel to live with Asperger syndrome? Health Wales asked Mark Annis, an artist who lives in Penarth. He has Asperger syndrome and struggles to understand how today’s society could ever be described as enlightened. No matter how many times we tout the concepts of tolerance and integration as part of our social values, Mark sees little evidence of either in his daily life.


Autism Connected To Gene Central To Neuron Formation, Study Shows
A team at Stony Brook University Medical Center has found that a disruption of the Contactin 4 gene on chromosome 3 may be linked to autism spectrum disorder (ASD). What causes ASD, a developmental disorder of the central nervous system, is largely unknown. Dr. Hatchwell’s finding suggests that mutations affecting Contactin 4 may be relevant to ASD pathogenesis, and thus a potential biomarker for some individuals with the disorder.


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ONTARIO NEWS AND ISSUES

Vulnerable Adults: What are the Safety Checks?
A discussion paper by Gail Jones about the extent of abuse of adults with disabilities by their caregivers, and prompted especially by the tragedy of Tiffany Pinckney, a young woman with autism in Mississauga who was neglected by her sister and starved to death in 2005.
The author is Director of Community Supports with Kerry's Place Autism Services and knew Tiffany. She
invites discussion "to create increased awareness and discussion about the issues relating to safety mechanisms for adults who are vulnerable due to severe/multiple disabilities and potential life circumstances." She points out that we need a balance between "protection when needed for adults who are vulnerable" and encouragement for the "autonomy, rights and freedoms that people with disabilities have worked so hard to achieve."
Click on title to read the discussion paper. Click here for a note about Tiffany's death
Vulnerable people may be abused by others besides family members. Click here to read a Globe and Mail editorial on February 25 about failures of the care system in New Brunswick. One of the two cases reported by the Ombudsman there is a youth with Asperger's.


Communication Assistants: A Model for Communication Access
New resources about communication access for people who have communication disabilities. Please raise awareness about the supports some people who use augmentative communication may need in order to fully to participate in their communities. Find out about a pilot communication assistant project and how to start up a service in your area.

Augmentative Communication Community Partnerships-Canada (ACCPC) is a federal, non-profit organization that undertakes social innovation projects to promote awareness, justice, enhanced quality of life and community participation for people who use augmentative and alternative communication (AAC).
Visit the website at www.accpc.ca


“Keep it Simple, Keep it Flexible; 27,000 Families Deserve the Best”

Special Services at Home Provincial Coalition (SSAHPC) released new position paper January 15, 2008. Alison Ouellette and Beth French, Co Chairs , SSAHPC. Please click on title to read the paper on the SSAHPC website.



Financial Planning

In our past bulletins we have noted progress of plans for the Registered Disability Savings Plan. Click for a description of the RDSP by the Canada Revenue Agency and a discussion by PLAN, the organization that spearheaded advocacy of the RDSP
However, families should be a bit cautions about this form of financial planning and when it will be available. Click for the February bulletin of the Special Needs Planning Group.

Click to read Tax Tips for Completing Your 2007 Tax Return

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CALLS FOR HELP

Physicians who are Sensitive to Autism
We continue to receive appeals for advice of various kinds, including regular requests for recommendations of medical doctors in any part of Ontario who are "understanding and accepting of patients who are people with autism and who have a more holistic approach to treatment for medical conditions etc."

If you know someone you could recommend, please let us know, and we will pass on the advice.
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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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Announcing Series of Events
The first two initiatives below are for children and in a limited geographical area, but may stimulate useful programming ideas for adults and for elsewhere....
 

Parents and Professionals Together
, in Guelph-centred region
A series of workshops in Guelph, of interest to parents, caregivers and professionals working with children with special needs:
March 27: Dealing with people unaware of a child’s needs
April 10: Sleep difficulties
April 24: Spark of Brilliance—for all ages
Click for flyer with more details

Spark of Brilliance announcement... , in Guelph-centred region
KidZCreate will be launched in the spring of 2008!
Highly qualified Creative Mentors will be facilitating workshops in creative expression, learning about nature, experiencing music and sounds, working with creative materials, and much more--for children and families living with autism and developmental challenges.

Spark of Brilliance along with Trellis and KidsAbility and will be meeting with families, children and supportive professionals on Thursday, April 24 from 7 to 9 pm at 8 Royal Road to present our program and generate dialogue that will enable us to provide the very best in creative programming!

In conjunction with the new initiative Spark of Brilliance is offering a new section on its website where children and families living with autism and developmental challenges will have the opportunity to spotlight their gifts and talents and connect with others with similar experiences. Please visit www.sparkofbrilliance.org/kidzcreate
Click for schedule
Click for letter


PLAN Institute offers
Weaving the Ties That Bind
Online Training Course for Facilitating Social Support Networks
"Facilitated social support networks are an effective way to address the isolation and loneliness of many people living on the margins of our society. These networks (also known as “circles of friends”) are proven to contribute to the health, safety and well being of individuals who are vulnerable as a result of age, disability or social circumstance."
Click on title for details of availability and to register--for April, May, September, October, or November.

Regional Support Associates (mainly in SW Ontario)
continues to offer a broad range of educational programs for front-line staff and managers.

Winter workshops in 2008 are about:
Fostering healthy relationships
Moving towards increased independence
Preventing sexual offending behaviours
Good Grief
Advanced topics in behaviour analysis
Click for full details


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Announcing Individual Events


March 24, 2008, 8pm, in Toronto
Celebratory Harp Concert
Harpist Judy Loman celebrates her 50th season as a professional musician in Toronto by presenting a concert which looks back on her career as teacher, performer and supporter of new music for the harp. The concert will take place in the Concert Hall at the Royal Conservatory of Music, 90 Croatia St. This event is dedicated to her late and beloved husband, Joseph Umbrico, former principal trumpet with the Toronto Symphony Orchestra and will be a fund raiser for the Joseph Umbrico Memorial Bursary and Project Fund for Haadd: Help for Adults with Autism and Pervasive Developmental Disorders, and The Toronto Chapter of the American Harp Society scholarship fund. Click for press release More information will be posted to OAARSN network soon.


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 10-11, 2007, 9am to 4pm, in Toronto
Facilitation Workshop: Building a New Story
A New Story across Canada involves the creation of individualized supports
and strengthening communities through the presence and participation of all citizens.
Led by John Lord and Charlotte Dingwall
whose approach to training recognizes that
all of us can benefit from the skills of listening, planning, group work, collaboration and
negotiation
--the essence of facilitation.
Click for brochure and registration form



Saturday, April 12, 2008, 9-12am, in Mississauga
Estate Planning for a Family Member with ASD
Offered by Kerry's Place Autism Services
Click for flyer


April 19, 2007, in Toronto
The Specialty Food Shop presents
A Gluten-Free Cooking Demonstration for people who follow a gluten-free diet

Conducted by: Donna Washburn PHEc & Heather Butt PHEc

Click for more details


April 22-23, 2008
Wales' 3rd International Autism Conference in Cardiff
Places are still available at
http://autismconnect.c.topica.com/maakEnhabFWsJa4kDJcb/



April 23-24, 2008
Stages of Autism: Adolescence and Beyond
2nd Biennial Conference
In Hamilton Convention Centre
Message from Michelle McIntyre, event organizer: "The first Stages of Autism: Adolescence & Beyond Conference attracted 300 parents, educators, service providers and healthcare practitioners from all over Canada and the US. Don’t miss out on this great opportunity to attend a unique conference that will provide an open forum for discussion and cover a multitude of topics related to adolescent and adult Autism Spectrum Disorders."
Click for links to full conference information


Thursday April 24, 7 to 9 pm, in Guelph, discussion of
NEW INITIATIVE OFFERED FOR CHILDREN WITH AUTISM
Spark of Brilliance announces a new initiative for children and their supportive/families allies living with autism and developmental challenges!
KidZCreate will be launched in the spring of 2008! Highly qualified Creative Mentors will be facilitating workshops in creative expression, learning about nature, experiencing music and sounds, working with creative materials, and much more!

Spark of Brilliance along with Trellis and KidsAbility and will be meeting with families, children and supportive professionals on Thursday April 24 from 7 to 9 pm at 8 Royal Road to present our program and generate dialogue that will enable us to provide the very best in creative programming! Please click on link for more.



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


May 27-29, 2008, in Detroit
“Everyday Freedoms”
International Conference of Center for Self-Determination
”Cutting Edge in a City with an Edge”
Detroit Marriott, Renaissance Center, Detroit, USA
Conference Highlights:
§                            Discussions about meaningful lives, real freedom
§                            Community membership, income asset & development
§                            Aging with dignity & freedom
§                            Recovery in the context of self-determination
§                            Families truly supported to best assist in developing self-determined lives
§                            International perspectives on these issues as well as discussions of what system change requirements are needed: what works and what interferes
Click for more information


June 8th Nathan Philips Square
(Autism Speaks) 2008 Walk Now for Autism
Click for poster


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


June 13-15, 2008, in Waterloo
International Conference 2008 presented by Laurier Centre for Music Therapy Research
Making Connections:
Exploring the relationship between music therapy and music education

Music Therapy keynote speaker, Dr Amelia Oldfield of the UK, is specialized with music therapy with autistic children. 
Pre-Conference workshop June 12, 2008
Click for full information

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BOOKS AND OTHER RESOURCES

Look Me in the Eye: My Life with Asperger's by John Elder Robison
Crown, 2007. ISBN: 978-0-307-39598-6 (0-307-39598-7)
The moving, darkly funny story of growing up with Asperger’s at a time when the diagnosis simply didn’t exist. A born storyteller, Robison takes you inside the head of a boy whom teachers and other adults regarded as “defective”....
Read review in New York Times


Families of Adults with Autism
by Jane Johnson and Anne Van Rensselarer, eds.
Jessica Kingsley Publishers, 2008.  ISBN-10: 1843108852   ISBN-13: 978-1843108856
"A collection of real-life stories of people on the autism spectrum growing up, as told by their parents and siblings. The individual accounts explore the challenges that families of people with autism have faced, and the techniques they have used to improve the quality of their children's lives, from mega-doses of vitamins and dietary changes to intensive interaction. The contributors also relate how they have worked with their children or siblings to help them to function at their highest possible level, be it showing an awareness of their environment, holding down a full-time job in a local store, competing in the Special Olympics, or achieving international recognition as an artist.
"What makes the book especially interesting is that most of the subjects in the stories were born in the 1950s-the generation whose parents were told that they caused the disorder by cold parenting.  Faced with nearly non-existent services, these so-called "Refrigerator" parents rolled up their sleeves and set to work to find ways to blaze the trail for succeeding generations in the realm of adult issues such as living arrangements, employment, and recreation. The fact that sometimes the parents succeeded beyond expectation and sometimes the odds were simply too great makes it both a heart-warming and occasionally a heart-breaking read." 


Creative Therapy for Children with Autism, AD/HD and Asperger's Using Artistic Creativity to Reach, Teach and Touch Our Children. Book by Janet Tubbs
      It is no easy task to find a teaching technique that can truly change the course of a child with special needs. Thirty years ago, when Janet Tubbs began working with children who had low self-esteem and behavioral problems, she developed a successful program using art, music, and movement. Believing that unconventional children required unconventional therapies, she then took her program one step further--she applied it to children with Autism, AD/HD, and Asperger’s Syndrome. Her innovative methods and strategies not only worked, but actually defied the experts. In this new book, Janet Tubbs has put together a powerful teaching tool to help parents, therapists, and teachers work with their children.
      The book is divided into four parts. Part One begins by introducing and explaining Janet’s novel approach to teaching. Her goal is to balance the child’s body, mind, and spirit through proven techniques. The next three parts provide a wide variety of exercises, activities, and games that are both fun and effective. Each is designed to reduce hyperactivity, increase and prolong focus, decrease anger, develop fine motor skills, or improve social and verbal skills. All are part of a program created to help these children relate to their environment without fear, anxiety, or discomfort.
      Just because a child may appear stubborn and difficult, doesn’t mean that the child isn’t intelligent, curious, or creative. With the right approach, such a child can be reached, taught, and, hopefully, started on the road to improvement. The daily lessons provided in this book may be just what you and your child have been waiting for.


AWARES: Autism Cymru site about forthcoming conference with many other webpages relevant to adults)
International Conference in Cardiff, Wales, April 22-23.


GLIMPSE
Welcome to GLIMPSE, a new publication of ICDL that showcases the writings and artwork of individuals with a history of autism spectrum disorders and other developmental disabilities. We hope to provide a GLIMPSE into the unique perspectives and rich inner lives of people who might otherwise not find a voice. We welcome your submissions and feedback (see last page), and hope you enjoy our first edition.

The Soul of Autism, the follow-up book to Autism and the God Connection, is now in print from New Page Books and, as of today, is available on Amazon.com for $10.19 (discounted from its $14.99 retail price); it will arrive in bookstores by month's end at the latest. To learn more about it and to read the advance praise it's garnered, kindly visit the "Bill's Books" section of www.williamstillman.com.


God's Ears
Previews of the forthcoming (2007) movie,  about an autistic boxer's search for meaning in a 
relationship...
written, directed, and starring Michael Worth:
The trailer can be seen at: http://www.youtube.com/watch?v=B8gV6jRUaWk
The teasing trailer can be seen at: http://www.youtube.com/watch?v=82a_dNMj-8I


A Place Called Home--second edition now available

Alison C. Ouellette is happy to announce the newly updated and revised second edition of “A Place Called Home” this month. It describes the journey of the Ouellette family and their son David’s quest for an everyday life, and contains new stories of a life unfolding, photos and contributions by friends and family.
Read this testimonial by Jan Burke Gaffney, Hamilton, past president of Family Alliance Ontario
Although the Ouellette family story is so beautifully told in this moving memoir; the impact of their contribution is not chronicled.   The author, Alison Ouellette, was and continues to be a leader in the family support movement.  Her work in Pilot Parents, Extend-A-Family and Special Services At Home Provincial Coalition; her awards such as the Family Alliance Family Leadership award, reveal a life on the front lines of the disability rights struggle.  The hundreds upon hundreds of persons with disabilities and their families who have benefited from Alison's work are not in this book but have had their lives touched and improved by her work.  The inspiring story of her son David has taken her on speaking tours throughout Canada, Australia and New Zealand.  Thousands of families will continue to fight for their children with disabilities to live lives of their own choice because they have heard her message which urges us all to "Never Give Up! "  
If you are interested in this new release, you can order copies through Alison’s or David’s web site. There is an order form there for you to download. http://home.cogeco.ca/~aco-web/ or http://home.cogeco.ca/~davidkyle


Thinking creatively about new opportunities
for person-centred and self-directed lives.......... just published

CREATING A HOME AND GOOD LIFE OF MY OWN
Strategies and formal agreements developed by
Guelph
Services for the Autistic in its role as housing trust

GSA has functioned as a housing trust since 1997, its mission to help adults with "Autistic Disorder" to live in their own homes with dignity and safety, supported by family and friends--and with self-directed planning, individualized funding, and infrastructure services as needed.

Other families and organizations, concerned with persons who have other special needs, are interested in following the paths pioneered by GSA, so we have compiled this 120-page guide to the various agreements and procedures, with some explanatory text.

A new resource that is valuable for anyone who is trying to direct their own person-centred life, and for their families and friends.
 
Contents: (click the links to reach an excerpt)

Please click on this link for the flyer

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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