ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date 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

See our archive of past OAARSN news bulletins. 

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.

 

NEWS BULLETIN
24 March 2003
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OAARSN is three years old!
What changes have we seen since we launched the website in March 2000?

There seems now to be much greater awareness of autism in the news media, where there was almost nothing in Canada three years ago. 

Estimates of the prevalence of autism continue to rise. But we wish publicists and advocates would be more accurate in their claims. Too often we see statements like this: "Ten (or twenty years) ago autism affected only one in ten thousand children. Now, it's up to........" However, for nearly 40 years, we've been able to quote prevalence rates of 4 to 5 in every 10,000 (for classic autism) based on careful studies in several world regions. Autism affects so many now, we don't need to exaggerate the increase. And such statements also downplay the plight of adults with ASD, whose numbers are now increased by all those whose Asperger's Disorder or High Functioning Autism as been identified only in adulthood.
 
Feisty parents of children with ASD are setting an example to older parents of adults in demanding funding for appropriate interventions. Let's hope the next three years will see more encouraging news of good lives for adults on the autism spectrum.

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AUTISM IN THE NEWS

Autism numbers surge
Another story about the increased prevalence of ASD, with a call for research.

New Brunswick Parents Protest
An angry group of parents of autistic children engaged in a verbal confrontation with New Brunswick's ministers of health and education during a demonstration outside the legislature. The parents have campaigned for the past three years for the province to fund Applied Behavioural Analysis treatment.

How autistic is my child?
Sophie Petit-Zeman on the man who is helping speed up diagnosis of a condition which affects over 2,000 British children a year 

Through A Glass Darkly; The Battle of Autism: Finding the Root Causes
Tory and George Mead are the parents of two children, Eleanor and William born in May 1998. George is an attorney who at one time practiced medical malpractice defense (defending doctors and hospitals). Tory is a writer and an advocate for special needs children. They live in Portland, Oregon. The full article is from Redflagsweekly.com, a web publication that probes the politics of health issues.

Doctor issues patent on Biomarker Linking Autism, ADD and ADHD

Genetic link may tie together pesticides, ADHD, Gulf War syndrome and other disorders
Research at the Salk Institute has identified a gene that may link certain pesticides and chemical weaponry to a number of neurological disorders, including the elusive Gulf War syndrome and attention deficit/hyperactivity disorder (ADHD). The finding, published in the March 17 online version of Nature Genetics, is the first to demonstrate a clear genetic link between neurological disorders and exposure to organophosphate chemicals; the gene is one that scientists had not studied in  previous efforts to find connections between these chemicals and disease. Organophosphates include household pesticides as well as deadly nerve gases like sarin. 

GPs 'unaware of autism needs' in  UK survey
Many GPs feel unprepared to treat patients with autism. The National Autistic Society (NAS) found 42% of GPs felt they lacked the skills or expertise to recognise signs of autism, half the number who have actually seen patients with autism in the last 12 months. The figure was even higher amongst those GPs who said they had not seen an autism patient in the last 12 months. Family doctors told the NAS they wanted more guidance.

Researchers find potential way to cut mercury emissions
Nasrin Rasaee Khalili's research breakthrough--potentially eliminating mercury from power-plant emissions--couldn't come at a more opportune time. Studies have shown that exposure to mercury, a highly toxic heavy metal, may be linked to Alzheimer's disease and autism.

Diet used to calm autism
Upon parents' requests and doctor's note, Detroit-area school cafeteria workers will prepare gluten- and casein-free meals for students. Linda Stull, a dietitian with the Department of Education, gives workers tips about kids' dietary needs.

Finding Hope
Parents of autistic children train in Massachusetts to bring Son-Rise program to Clovis homes. 

Behavioral Interventions Workshop Summary for Autism now available
"Research on Psychosocial and Behavioral Interventions in Autism: Confronting the Methodological Challenges" is document about EIBI, drafted by researchers, practitioners and community members who met on September 5 & 6, 2002 under the sponsorship of several NIH institutes.

Parents need to fight
Some institutions need shaking up to get right care for kids. "Studies show that parents of severely disabled children are more motivated to advocate for their offspring than parents of children with mild disabilities. "Sometimes parents of children with mild disabilities have ambivalent feelings about speaking up for their youngsters," said Lynette Rosser, a family counselor at the Children's Hospital of Pittsburgh.

New UC Davis M.I.N.D. Institute Buildings to Display Artwork of Children, Adults with Autism Click for story

Research on Autism Spectrum Disorders
19 Autism Related Abstracts – contains technical language.
Read these research abstracts
   *  How well does early diagnosis of autism stand the test of time? Follow-up study of children assessed for autism at age 2 and development of an early diagnostic service.
   *  Ability profiles in children with autism: influence of age and IQ.
   *  The development and maintenance of friendship in high-functioning children with autism: maternal perceptions.
   *  Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism.
   *  Understanding autism: insights from mind and brain.
   *  A retrospective analysis of the clinical case records of  'autistic psychopaths' diagnosed by Hans Asperger and his team at the University Children's Hospital, Vienna.
   *  Identifying neurocognitive phenotypes in autism.
   *  Why is joint attention a pivotal skill in autism?
   *  Does the perception of moving eyes trigger reflexive visual orienting in autism?
   *  The pathogenesis of autism: insights from congenital blindness.
   *  The enactive mind, or from actions to cognition: lessons from autism.
   *  The systemizing quotient: an investigation of adults with Asperger syndrome or high-functioning autism, and normal sex differences.
   *  Towards an understanding of the mechanisms of weak central coherence effects: experiments in visual configural  learning and auditory perception.
   *  Disentangling weak coherence and executive dysfunction: planning drawing in autism and attention-deficit/hyperactivity disorder.
   *  The reach-to-grasp movement in children with autism spectrum disorder.
   *  Investigating individual differences in brain abnormalities in autism. 
   *  The role of the fusiform face area in social cognition: implications for the pathobiology of autism.
   *  Cognitive evoked potentials in autistic children.
   *  Joint attention training for children with autism using behavior modification procedures.

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar
See our archive of past OAARSN news bulletins. 

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 
 Please Do Not Send Files Or Brochure Attachments 
 

new postings

April 15th, 2003 is deadline for submissions for 
"BOOK OF AUTISM ART" 
featuring artwork by people on the autism spectrum all over the world.
By Autism Today in collaboration with  Autism Arts. 
The book will be full color, 7 x 10 and under sixty pages. The retail price will be $26.00 USD. 
This creative idea is driven by the desire for both Autism Today and Autism Arts to bring the creative art talent of those living with an autism spectrum difference greater exposure and the chance to promote their wonderful work. This will empower them to express their personal best to a broad audience. 
The intent is that each and every artist selected will be permitted to write a 100-word summary of themselves and their interest and also list all of their contact information right in the book next to their artwork. This way others can find their art and purchase directly from the artist. This offers great potential especially for the artists! 
Artists may submit art which they have scanned themselves according to the following specifications: 300 dots per square inch (dpi) in tiff format and from 3 x 5 to 6 x 9 inches in size. At the most, only five pieces will be chosen from any artist. 
They will also be asked for their summary, contact information and will sign a release for publication form. Also, all participants will be showcased on Autism Arts's virtual art gallery  PH: 780-417-5336 
E- mail: ARTism@autismtoday.com 
 

April 28 - 30, 9-5pm
Inclusion Press presents TOOLS FOR CHANGE workshop
with Hosts Jack Pearpoint and Louise Bailey
College St United Church, 452 College St, Toronto
Hands-on Learning: Graphics, PATH, MAPS, Solution Circles,
Listening, Facilitating
Tuition $500 per person, payable to Inclusion Press
Send cheque with full details of name, address, phone and email
to Inclusion Press, 24 Thome Crescent, Toronto, ON M6H 2S5
Enrolment is limited; register soon!
For more about Tools for Change, see the Inclusion Press website 
 

May 16 to 18 in Philadelphia: 
DAN! Spring 2003 conference
Click here for a listing of speakers and topics as well as online registration
 

May 30 and 31, 2003: Second National Conference on Aspergers: 
Celebrating our achievements: Setting our sights
Click for conference program
Online Registration will be available after April 1, 2003. 
Metro Toronto Convention Centre
Tel: 416-651-4037
Email: conference@aspergers.ca 
Aspergers Society of Ontario website

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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area
 

A HOME OF ONE'S OWN
Most of us would uphold the rights of every person to have his or her own home, as well as choice about whom to share it with. People with autism have particular needs for quiet space in their homes. Even when publicly-funded or subsidized housing is available, it may not be suitable for people who are hypersensitive to noise and the closeness of other people.

  • An Ontario man with ASD, who does have his own home and wants to improve it, has been unable to qualify for CMHC grants generally available for landlords. 
  • One mother with two children, all with ASD, found a place that was quiet and peaceful, but the landlord will not maintain or improve the severely sub-standard housing.
  • Some adults with autism cannot tolerate group home conditions. 
Do you know people who face similar problems? 
Can you suggest how these problems could be overcome? 

Please reply to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page If you prefer to respond privately, we can put you in touch.

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HELPFUL RESOURCES

1. Sensory Integration Therapy Interview with Lorna Jean King, OTR, FAOTA 
Lorna Jean King (LJK) was one of the pioneers of sensory integration therapy, an international lecturer on this topic, and the Founder and Director of the Center for Neurodevelopmental Studies, Inc. in Phoenix, Arizona. This interview was conducted by Stephen M. Edelson (SE) on June 9, l996. 

2. Teaching Individuals with Developmental Delays: Basic Intervention Techniques, by Ivar Lovaas. Ivar Lovaas’ long-awaited update of the UCLA Early Intervention Project. Provides the what, why, and how of the vaas ABA approach. 2002, paperback, 429 pages. ($64.00)

3. Vaccines: Are They Really Safe and Effective?, by Neil Z. Miller, updated/revised 2002. An extraordinarily interesting and compelling analysis of the vaccine controversy. Clearly written, illustrated with dozens  of
invaluable graphs and fully-documented (916 references!). This book should be read by every parent, parent-to-be, physician and legislator.  Paperback, 127 pages. ($13.00)

4. Vaccines, Autism and Childhood Disorders: Crucial Data that Could Save Your Child’s Life, by Neil Z. Miller. Up-to-the-minute discussions of the MMR controversy, the Danish study, and Congressional testimony. Thoroughly documented, over 500 references, 28 charts and graphs. 2003, paperback, 128 pages. ($15.00)

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING 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.

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 problems and your success stories, if you think others might help or benefit.

If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page
 

 

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