ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   20 October 2007


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GENERAL ADULT AUTISM NEWS


Scientists make gut-brain connection to autism
Compounds produced in the digestive system have been linked to autistic-type behaviour in laboratory settings, potentially demonstrating that what autistic children eat can alter their brain function, say scientists from the University of Western Ontario.
UWO researchers investigated the "gut-brain" connection after many parents of autistic children reported significant improvements in the behaviour of their autistic children when they modified their diet, eliminating dairy and wheat products, Dr. Derrick MacFabe, the director of a research group at UWO in London, Ont., told CBC News Thursday.
Researchers were particularly interested in one dietary characteristic the autistic children seemed to exhibit, he said.
"Certainly, a lot of these children had peculiar cravings for high-carbohydrate foods that caused their behaviours," he said.
"We were interested in finding a link between certain compounds that are produced by bacteria in the digestive system — particularly those occurring with early childhood infections."


Statistics: how many people have autistic spectrum disorders?
"How many people have autism?" is one of the most frequently asked questions and unfortunately it is also one of the most difficult to answer. There is no central register of everyone who has autism, which means that any information about the possible number of people with autism in the community must be based on epidemiological surveys (ie studies of distinct and identifiable populations). A review on the National Autistic Society (UK) website.


Author Janet Frame suffered from 'high functioning autism'

The internationally-acclaimed New Zealand author Janet Frame may have had autism, says a doctor who found repeated signs of the condition in her three autobiographical books.
"Janet Frame was an interesting example of what may be achieved by those with strong autistic features," rehabilitation physician Dr Sarah Abrahamson says in today's New Zealand Medical Journal. Dr Abrahamson, of the Queen Elizabeth Centre in Victoria, lists the key features of high-functioning autism in adults as:
* Impairment in social and high-level communication skills.
* Impairment in development of normal peer relationships.
* A special interest, which is abnormal in intensity and focus.
In other news, members of the author's family are very indignant about this article. It is noted that one of Janet Frame's nieces was diagnosed in autism in the 1970s.


Study shows autism symptoms can improve into adulthood

A summary of the main findings of a research project reported in the Journal of Autism and Developmental Disorders. It is the first systematic study of how the symptoms of autism, that occur in widely different combinations and degrees of severity, may improve with age. "On average, people are getting better," says Paul T. Shattuck, first author of the paper. "For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened... Their development is not frozen in time and forever the same. That's just not the case...."

The new publication is part of a groundbreaking longitudinal study of more than 400 adolescents and adults with autism and their families led by Marsha Mailick Seltzer, professor of social work and director of the University of Wisconsin-Madison Waisman Center. The factors why some people improved are being sought in continuing research. Shattuck notes that, while the findings are hopeful, "the fact remains that those with severe autism will depend on others for their everyday needs and care for the rest of their lives" and "in terms of the underlying biological mechanisms, we don't yet know what's going on."
Click to read journal abstract and details of how to reach the full text


The Autism Research Project: Different studies, one goal

An account of a different follow-up study of some 480 participants who were identified 20 years ago as children with high-functioning autism (i.e., with a normal or higher IQ). The researchers are surprised at how Farley said it was surprising how well most are doing, many being married and with careers and families.


"Everyplace" needs to serve people with autism

This letter, about Vermont, is true of just about everywhere

"The state... needs to do a better job of serving kids/adults with autism spectrum disorders and disabilities that are not as visible. It is unacceptable that people who are on the higher functioning side of the autism spectrum have to struggle just to get funding for supportive housing (i.e. developmental homes, supportive apartment living), transportation, job coaching, counseling, post-secondary training, and respite for adults. We have a lot of work to do in terms of improving developmental disability services and the process for getting them for people on the autism spectrum. There are many parents out there including mine that want to see services for those that desperately need them. Every client needs to be present when they do funding committees for adult developmental services.

Every high school should have an apartment program just like they do at U-32. So that students with learning and developmental (autism spectrum) disabilities will have the tools to succeed in the real world. There is no excuse why people with disabilities that aren't visible like autism should be falling through the cracks! It is unacceptable that as a society that we let this happen to people with invisible disabilities that could really benefit from residential support services such as supportive apartment living, developmental homes, supported employment/ job coaching, transportation, higher ed supports, etc. It's time to set aside the bureaucracy and provide more funding for developmental services for Vermonters who have autism spectrum disorders and other developmental disabilities that are not as visible. It's time for a change!"
(by Nicole Leblanc of Randolph)


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CANADIAN AUTISM NEWS


Government of Canada Response
to Senate Committee's call for a National Autism Strategy
T
he Canadian Standing Senate Committee on Social Affairs produced a report, "Pay Now or Pay Later: Autism Families in Crisis,"
in March 2007. It is interesting to compare this response with the original Senate report which may be reached at this link:
Pay Now or Pay Later: Autism Families in Crisis (English version)
The main new initiative (referred to several times) is the organization of an ASD research symposium conference on November 8-9, 2007. There is very little indeed about the needs and potential of adults with autism, who are assumed to be numerous.

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CALL FOR PEOPLE TO CO-OPERATE WITH RESEARCH PROJECTS

1. Marina Sokolova is a psychology graduate student at York University. She writes: 
"Currently, I am working on my Master's thesis, and I am trying to recruit participants for my study. I need about 10 adults with Asperger's; however I am experiencing great difficulties finding them. My study takes about 15 minutes to do and I will travel to wherever the participant desires. There is more details on the website: http://www.mehri.ca/research/prosody.html
Please help me to reach people to take part in this study which is called: The Relationship between the Theory of Mind and the Comprehension of the Contrastive Stress in Autism."
Click to read participant information letter
Marina Sokolova
MA candidate
York University
MEHRI lab

2. Dr Shana Nichols seeks adults (ages 21 to 65) with Aspergers, HFAutism or PDDNOS to take part in an autism researh study. Adults with self-diagnosed autism spectrum disorders are also welcome to participate. Here is a description of the project.
Researchers at the North-Shore-LIJ Center for Autism and the University of New Brunswick are conducting an online research study about 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.
Participants in the research will complete a set of questionnaires online at www.unbstudy.com that takes approximately 45 minutes to 1 ¼ hours to complete.
For more information contact:
Shana Nichols, Ph.D., Licensed Psychologist/Researcher at 516-802-8600 or snichols@nshs.edu
Fay J. Lindner Center for Autism
North Shore/Long Island Jewish Health System

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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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October 25-26, 2007, 9am to 4pm, in Guelph (Orchard Park)

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



October 26, 2007
, in Waterloo
3rd Annual “Learning Outside the Box” conference
Shifting the Mindset: Enhancing Potential for the ASD Learner

Opening Address
Key Issues Facing Educators and Families of the ASD Learner
with Margaret Spoelstra - Executive Director - Autism Ontario
Keynote Presentation
Essential Elements of Positive Practice
with Leslie Broun - Autism Education Specialist - Geneva Center for Autism
Click for full conference details


Friday, November 2, 2007, 9:30-3:30
Adults with Autism Spectrum Disorders:  Mental Health and Behaviour
Presenters:  J. Dale Munro, MSW, RSW, FAAIDD and Lillian Burke, Ph.D., C. Psych.
Elmhurst Inn, Ingersoll, Cost: $50.00
To register please contact Eszter at 519-433-7238, Ext. 2100 or email eerdelyi@wgh.on.ca


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


Looking ahead.....

Wednesday & Thursday, 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

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BOOKS, JOURNALS, WEBSITES, PROGRAMS


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)
Approx. 270 pages, 500 g, 6 X 9, $29.50 (US$26.75)
Reviewed for us by J. Edward McCartney, who is concerned with autism and mental health issues, and is a board member and volunteer with Guelph Services for the Autistic. Click to read the review


New book about family experience

Barbara Coppo is a mother with an extraordinary story. In her new book, The Boy in the Window (Morgan James Publishers, Nov 2007), Coppo recounts the endless struggles the family has dealt with since their son, Kenny, developed autism and other serious disorders due to his routine DPT vaccination that he received in 1979, when he was 19 months old. Coppo takes the reader on a journey through daily life in their household as she and her husband Ken care for their now 29-year-old son who is afflicted with seizures and extreme behaviors because of the vaccine that was meant to protect him.
"Our story is not a self-help guide with facts, figures, and statistics; nor is it about debates on autism, vaccines or otherwise," says Coppo. "It is a human nature story starring my son, Kenny. My intention is to provide hope to those families raising autistic children by telling how our love for Kenny surpasses the daily challenges, no matter how profound and impossible his behaviors are."  With the proceeds of this book, she hopes to open a center for young adults with autism. Please visit http://www.theboyinthewindowbook.com


Research into autism spectrum disorders
View the Research in Progress database of the National Autistic Society UK; advertise for research subjects; view Autism Data, a database of references for over 17,000 published articles, books and videos on autism, including Asperger syndrome.


Visit USAAA Weekly News
an email newsletter by the US Autism & Asperger Association, Inc., that addresses a range of topics on Autism Spectrum Disorders and Asperger's Syndrome. This week's topic is: "Our Success Working With Biomedical and Behavioral / Developmental Interventions Together "


Mind Research Institute offers math teaching tool that is not dependent on language


Freeware Program--papagao
Here is another freeware program that some in the autism community might be interested in.
It is able to enunciate, in video format (of a mouth), certain words and phrases, up to sentences (and small discussions).
There are existing files (*.pgo) in the tutorial that have been developed, and the tutorial (via web page) outlines how to
import wave files, adjust for the phrases, adjust for the words, and the phenomes, if necessary.
It takes some time to learn the program, but it might be useful for a few out there who are into phenomes and pronounciation.

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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.

What's it like to have autism or Asperger syndrome?
Read some real-life stories from people with autism spectrum disorders (ASDs) and find out what it can be like to live with someone with an ASD. (National Autistic Society UK).

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