ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   5 February 2008


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GENERAL ADULT AUTISM NEWS

Adults with Autism: I exist!

Thinking Differently, the current effort in the UK to draw attention to adults with autism, launches a new phase today.
Click on the link above to explore what it means...

Autism also affects adults.
Most are isolated and ignored.
Think. Act. Transform lives
.
  • I Exist is the message from adults with autism, who have been isolated and ignored for too long.
  • A study for the National Autistic Society (NAS) has found 63% of adults with autism in England feel isolated and lack help.
  • The I Exist report also found 61% of adults with autism rely on their family financially while 40% live with their parents.
  • A total of 60% think the lack of proper services has led to them needing higher levels of support later on.
  • At least one in three adults with autism is also experiencing severe mental health difficulties due to poor care, the study found.
  • Overall, 67% of local authorities do not keep a record of how many adults with autism there are in their area and 65% do not know how many they support.
  • Amanda Batten, NAS head of policy and campaigns, said: "For too long adults with autism have found themselves isolated and ignored.
  • "They struggle to access support and are often dependent on their families.
  • "It does not have to be like this - I Exist is the message from adults with autism who want their needs understood and the barriers to support removed.
  • "The right help at the right time can have a profound effect - we are calling on the Government to think, act, and transform lives."

A very good article in The Times yesterday is related to the "think differently" campaign, and features a whole village in Yorkshire devoted to young adults with autistic disorder, as part of a complex of other supports. It is a private venture, but each of the 67 "students" there, his or her local authority (municipality) pays an average of over $6000 per week. The values and principles are individualized, and the quality of life seems high. Read Care in the community about "Hesley, a purpose-built, privately run community for young adults with severe autism who have been excreted from the school system at 16..."
Read about The Hesley Group


The level of unemployment among people on the autism spectrum is massive
Donna Williams writes about www.auties.org in The American Chronicle:
"Because of poor social skills, sometimes because of limited communication skills, uneven abilities or other autism related issues, non-autistic people tend to get places at the front of the job queues. Socially, those on the spectrum are often the most socially isolated and have limited social networks to develop their interests and skills. But you don´t have to wait for the services. You can do something in the meantime. You can begin to create opportunities, then refine and develop your ideas...."
Visit Donna's website


Autism Sunday and International Day of Prayer for Autism and Asperger's Syndrome on 10 February

Ivan Corea, head of Autism Awareness Campaign UK, urges churches to speak out on the needs of people with Asperger's Syndrome and autism. There are around 60 million people with autism around the world and over 500,000 people affected in the United Kingdom, say health campaigners.


Autism link to immune system: study
"In another tantalising link between the immune system and autism, researchers at the University of California Davis have found 11 genes, all governing "natural killer" immune cells, that are more active in autistic children than in other youngsters."


Maverick Against the Mendelians
"Using standard inheritance theory, scientists have searched for the genes underlying autism with little success. Michael Wigler thinks he knows why - and how the disorder persists over generations."


She's got her whole world in her hands: For adults with autism disorders, wireless handheld devices offer the promise of organization and independence
For Rachel Cohen, a 25-year-old with Asperger's syndrome, a missed appointment or unexpected problem can throw her into a state of panic and anxiety. Her autism disorder means that she must wage a lifelong struggle to manage the daily tasks that come as second nature to most people, such as recognizing the faces of family and friends, remembering appointments and keeping track of her money. But a new program that uses wireless handheld devices is offering fresh hope...
Related Press Release by The Geneva Centre



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APPEAL FOR HELP


"Can anyone suggest a family doctor or a psychiatrist in the Greater Toronto area?  We are looking for someone who is respectful to clients and families,  knowledgeable about autism, considers the whole person, and does not prescribe needless drugs."    


 
CALL FOR PARTICIPANTS IN A SURVEY

Do You Have High-Functioning Autism, Asperger’s Disorder, or PDD-NOS?

Are you between the ages of 21-65?
Are your cognitive abilities within the low average to above average range?
Would you be interested in learning more about yourself and how you feel about relationships and sexuality?


If you answered yes to the above questions, you are eligible to participate in a research study being conducted by researchers at the North-Shore-LIJ Center for Autism and the University of New Brunswick.

The purpose of this study is to better understand sexuality and relationships of adults with high-functioning autism spectrum disorders (ASDs). The information collected from the study may increase knowledge of how best to help teens and adults with ASDs experience healthy sexual development.
Participation in this study involves completion of a set of online questionnaires at www.unbstudy.com that will take between 45 minutes and 1¼ hours to complete.
For more information about this project, please contact Shana Nichols, Ph.D., Psychologist at 516-802-8600
or Sandra Byers, Ph.D., Psychologist at 506-458-7697
Georgianna Reilly
Research Assistant

Fay J. Lindner Center for Autism and Developmental Disorders
North Shore-LIJ Health System
4300 Hempstead Turnpike

Bethpage, NY 11714
Phone: (516)802-8686
Email: GReilly@NSHS.EDU

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NEW OPPORTUNITIES FOR ADULTS WITH AUTISM


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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Haadd: Helping Adults with Autism And Developmental Disabilities
announces new bursaries & grants for residents with autism
in the Greater Toronto Area

 
Haadd, a family based organization that helps adults with autism to establish meaningful lives and homes in their community, is pleased to announce
The Joseph Umbrico Bursary and Grant Programme
This programme has been developed in honour and memory of Haadd founding member, Joseph Umbrico who was deeply committed to improving the lives of adults with autism and their families.
 
Haadd welcomes proposals for bursaries from individuals on the autism spectrum for projects that will add to the quality of their lives.  Applications will also be accepted from non-autistic individuals for grants to assist in the development of projects designed to provide opportunities for adults on the autism spectrum. These projects may foster the development of interests and skills in areas which may include work, art, social and recreational pursuits.
 
Details regarding suitable projects, bursary and grant limitations, the selection process, and downloadable applications are available online at http://dante.med.utoronto.ca/haadd/
or may be requested by writing to:
Haadd
14 Abbotsford Road
Toronto, Ontario M2N 2P7  
The first grants and bursaries will be awarded in the spring of 2008.

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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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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...


Tuesday February 13, 2008  7 pm - 9 pm

Dr. Kevin Stoddart, PhD, RSW

Youth and Young Adults with Asperger Syndrome: Psychosocial Issues and Interventions

Youth and young adults are increasingly coming to the attention of clinicians for assessment and intervention. This presentation will review the diagnostic criteria as it may relate to affected youth and young adults. Dr Stoddart has extensive experience in the field of Autism Spectrum Disorders.  His focus for the last 15 years has been individuals with Asperger Syndrome.  He is Lecturer in Social Work at U of T and a national speaker on Asperger Syndrome.

 

Pre-registration is required.  Call 905-780-1590 or email:  rose_ann@autismontario.com
Workshop to be held at Loyal True Blue & Orange Home @ 11181 Yonge Street, Richmond Hill
Cost: $10 for members, $20 for non-members.
Contact: rose_ann@autismontario.com
NOTE: By registering and participating in this event, you are acknowledging that you may be contacted by Autism Ontario or one of its agents inviting you to participate in short surveys as part of the evaluation process for the RCP Program.
However, participation in these surveys is not mandatory.


Monday, March 10, 7pm, at Kitchener Public Library
John Lord and Peggy Hutchison talk about their book
Pathways to Inclusion:
Building a New Story with People and Communities
in the KPL’s Learning for Wellness series
The authors look at how our communities accommodate people with disabilities and discuss how society needs to change so our more vulnerable citizens move towards social inclusion.

Read Ted McCartney's review of this book for OAARSN
Copies of the book will be on sale.



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
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 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, JOURNALS, WEBSITES, PROGRAMS

Autism Tree Membership Website Provides Information and Support for Parents
"The Autism Tree website is now offering members an exclusive, continually updated and growing website with all of the latest Autism information and resources currently available. Autism Tree’s methods and strategies are written in an easy-to-understand language, and are both practical and effective in their implementation.

"The site itself was planned and drawn up using the feedback of 11,778 parents professionals, family members, and people with autism; subscribers to the “Essential Guide to Autism Newsletter”. Through surveys and other information collection techniques, the most important autism challenges were identified and Autism Tree is continually growing, providing information and resources giving practical steps that can help overcome those challenges and maximize the potential of a child or loved one with autism."


Book: Changing the Course of Autism: A Scientific Approach to Medical Treatment

by Bryan Jepson, M.D. with Jane Johnson. Sentient Publications, 2007.
358 pages. ISBN 1591810612
From the National Autism Association: “We're in the midst of a long-overdue shift in our understanding of Autism.  What was once seen as a mysterious, incurable mental illness is now being recognized as a medically treatable, whole-body disorder.”
Click for more details


Thimerosal in Vaccines and Neuropsychological Outcomes?
This study was undertaken to more thoroughly evaluate exposure to mercury (thimerosal is ethyl mercury) through vaccines in prenatal, perinatal, and infancy periods to determine whether the extent of mercury exposure in vaccines was associated with neuropsychological outcomes. Data were derived from the Centers for Disease Control and Prevention's Vaccine Safety Datalink, a monitoring program in several large health maintenance organizations (HMOs). Four HMOs provided data for the current study....

Overall, the authors detected no pattern of association with thimerosal exposure and developmental outcome. For example, prenatal exposure had a positive association (meaning that higher levels correlated with higher performance) with one measure and a negative association with another, and this only in the combined (male and female) subjects) and separately in males.


Future Direction of Evidence-based Psychopharmacotherapy in Individuals with Autism Spectrum Disorder
Luke Tsai, M.D. is a professor of psychiatry and pediatrics, and the director of the Developmental Disorders Clinic at the University of Michigan.
It is clear that there is no single best medication to treat a person with ASD....There is an urgent need to establish a mechanism that will be responsible for setting up-to-date evidence-based guidelines or policies for psychopharmacotherapy in ASD populations.

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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