ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
9 April 2005


NEW ON OAARSN

Please note:
The Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
on Friday, April 29, 2005 is now full, though we increased the number of spaces by 25 per cent.
We regret that we can accept no more registrations. However
we plan a process of collaboration in discussion and sharing resources, using the OAARSN website and other media. Highlights of keynote, workshops and poster presentations will be recorded and edited into audio and video resources to share with people and groups who cannot attend. Let us know if you cannot attend, but would like ot be kept informed of these resources.
Click for planning updates and conference program


Gerald Bloomfield attended the recent conference on
"Epilepsy, Autism Spectrum Disorders and Behavior" sponsored by Autism Society of Michigan & Epilepsy Foundation of Michigan. Read his report

Nancy Cherry, ASPIRE Advocate has compiled a guide to Transition Resources  (from school to adult years). Comments and suggestions  are welcomed.


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ONTARIO NEWS

Probe at Oaklands Regional Centre
Medical experts have joined a probe into the deaths of 10 residents (at least two of them autistic) at an Ontario home for the mentally disabled, as the province's chief coroner tries to determine whether an inquest is necessary. The expanded probe should wrap up by the end of May, and a decision on whether to hold an inquest will be made then.


Autistic children denied treatment, judge rules

Ontario has violated the constitutional rights and "human dignity" of autistic schoolchildren by denying them treatment they desperately need in order to cope and thrive, an Ontario Superior Court judge has ruled. Madam Justice Frances Kiteley found discrimination based on age and disability, bringing a dramatic end to a lawsuit launched by 29 groups of parents whose autistic children were denied autism treatment in the education system at the age of 6. She awarded the litigants damages that will run into the millions of dollars for past and future treatment. She also refused the province's request for a grace period in which to repair its delivery of autism programs, saying it has had ample time to fix the problem. ...  In an exhaustive 217-page decision, Judge Kiteley said the province broke an explicit promise in the Education Act to meet the needs of disabled children, and then failed abysmally to evaluate its existing programs. Without treatment, Judge Kiteley said, "the plaintiff children are deprived of the skills they need for full membership in the human community. That child's isolation and lack of skills mean that s/he cannot participate in society and cannot exercise the rights and freedoms to which all Canadians are entitled.
Read the full ruling document

The Ontario Government has announced that it will appeal this ruling. 
Ontario Government Appeals Autism Ruling



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GENERAL AUTISM NEWS

The Age of Autism: Series of articles in UPI by Dan Olmsted
who addresses intriguing questions of whether autism spectrum disorders have been always with us or
whether they appeared only in the 20th century. We've noted five earlier instalments.

The Age of Autism: Study links autism, mercury emissions
The study, accepted for publication in the peer-reviewed journal "Health and Place," looked for an association between rates of autism and special education in Texas and levels of mercury released into the environment.
"There was a significant increase," according to the study. "On average, for each 1,000 pounds of environmentally released mercury, there was a 43 percent increase in the rate of special education services and a 61 percent increase in the rate of autism."


More questions than answers in autism

The National Institutes of Health is expected to spend $102 million for autism research this year — a five-fold increase in six years. "We have many more questions than answers right now," a note in USA Today quotes research psychiatrist and neuroscientist Thomas Insel, director of the National Institute of Mental Health and head of an interagency federal panel on autism.


UNIVERSAL IMMUNIZATION Medical Miracle or Masterful Mirage
From the Vive le Canada website, comment on an extensive report about the current massive international effort to administer artificial immunization to the world's children. The author quotes research that found "hundreds of children who were fat and well before being vaccinated, but who are now chronically ill or seriously mentally or physically disabled. Of some 600 cases: the most common are autism (202); serious digestive problems (110); epilepsy (97); hearing and vision problems (40); arthritis (42); behaviour and learning problems (41); ME (24); diabetes (9); paralysis (9); blood disorders (5); brain damage (3); and death (14)." The report openly challenges the scientific, developmental, and humanitarian basis of this global public policy, and urges national governments to adopt a  more rational, effective and harmless inter-sectoral approach in seeking  natural immunity to infectious diseases.


Mercury: The Winged Messenger
From the publisher: "Every American child entering the public school system is required to receive 21 specified vaccinations designed to protect them from dangerous diseases. In his book (now available at online booksellers), Courtney L. Zietzke writes that a chemical added to those vaccines has exposed children to dangerous levels of toxic mercury, that has caused debilitating autism with the government’s full knowledge.


Pre-Term Labor Drug Sensitizes Brain to Pesticide Injury
A drug commonly prescribed to halt pre-term labor and stave off premature birth might leave the brains of children susceptible to other chemicals ubiquitously present in the environment, according to research conducted on laboratory animals by Duke University Medical Center pharmacologists. Their new study found that rats exposed to the pre-term labor drug terbutaline suffer greater brain cell damage than those not given the drug upon secondary exposure to the insecticide chlorpyrifos. The result might help to explain earlier suggestions that children whose mothers are administered terbutaline suffer cognitive deficits. The National Institutes of Health supported the research.

Biological link sought to mental illness

An increasing number of U.S. researchers are searching for links between viral and other infectious diseases and mental disorders, such as autism and depression. The theory is that viruses and bacteria that assault the immune system might also assault the brain. For example, Susan Swedo, a researcher at the National Institute of Mental Health, documented the sudden onset of obsessive-compulsive disorder and Tourette's syndrome in some children who suffered strep throat. If mental illnesses are confirmed to have biological roots, mental health advocates say it might lessen the stigma currently attached to mental disorders.

Study Links Free Radicals to the Spectrum of Autism
Many autistic children share a chronic flaw in the body's natural defenses against oxygen free radicals - corrosive molecules in the body that can severely damage developing brain cells, scientists said Saturday in San Diego. The molecular havoc caused by free radicals - natural byproducts of metabolism - is believed to be a major factor in the cell damage that underlies aging.



Genetics: A 'Striking' Fragile X Finding?
By Mary Carmichael for Newsweek, April 11 issue.
The genetic flaw called Fragile X has a suite of tragic symptoms—mental disabilities, autism and seizures among them. Like most developmental defects, it's permanent, or that's what doctors have assumed. Tom Jongens, though, thinks that there might be hope for a partial cure even after his Fragile X patients—fruit flies—are well into adulthood.


Primitive Brain Is 'Smarter' Than We Think, MIT Study Shows
"Primitive structures deep within the brain may have a far greater role in our high-level everyday thinking processes than previously believed, report researchers at the MIT Picower Center for Learning and Memory in the Feb. 24 issue of Nature. The results of this study ... have implications about how we learn. The new knowledge also may lead to better understanding and treatment for autism and schizophrenia, which could result from an imbalance between primitive and more advanced brain systems.

Clinical study of mirror neurons provides insights into autism and other disorders
Seeing is doing - at least it is when mirror neurons are working normally. But new research suggests that, in autistic individuals, the brain circuits that enable people to perceive and understand the actions of others do not behave in the usual way. According to the new study, currently in press at the journal Cognitive Brain Research, electroencephalograph (EEG) recordings of 10 individuals with autism show a dysfunctional mirror neuron system: Their mirror neurons respond only to what they do and not to the doings of others.


MRI Decodes Human Brain
A new magnetic resonance imaging machine is capable of imaging not just the anatomy but metabolism within the brain. Researchers at the University of Illinois at Chicago, where the MRI machine is located, say that the technology ushers in a new age of metabolic imaging that will help researchers understand the workings of the human brain, detect diseases before their clinical signs appear, develop targeted drug therapies for illnesses like stroke and provide a better understanding of learning disabilities. The scanner will help identify and monitor many common conditions and diseases of the brain -- including stroke, Alzheimer's, autism and mental illness. "The work we're doing mapping human thoughts brings so much promise to the future of medical research, specifically to our ability to really understand more about brain diseases... The medical and social implications of this technology include more personalized healthcare and earlier intervention to prevent disease."


Scan 'shows if people trust you'
US scientists say they can tell whether one person trusts another, by using an MRI brain scan. The results suggest that a brain region called the caudate nucleus lights up when it receives or computes data to make decisions based on trust. Professor Lyn Pilowsky, professor of neurochemical imaging and psychiatry at London's Institute of Psychiatry, said the caudate nucleus was certainly an important area of the brain involved in schizophrenia and autism.


Loved ones keep tabs with electronic bracelet innovation
Another good story about Project Lifesaver.


A Transparent Enigma
"Low-functioning autistics are not supposed to joke, write or creatively express a rich inner life. But then there's Tito Mukhopadhyay." So begins an article in Scientific American about Tito who combines all the signs of classic "low-functioning" autism with an ability to write and tell the world of what it's like to live with autism.


Aspergers artist having second show

Londoner David Downes is gearing up for his second solo exhibition, Above and Beyond 2005. David, who is supported by the National Autistic Society, paints detailed aerial views of London landscapes despite never getting off the ground. Using his imagination and keen eye for detail, his distinctive work captures the meeting of old and new architecture in the city.


Autism film tells a nation's story
A film about post-conflict Serbia - with a young, autistic actress in one of the lead roles - is being shown in London as part of the Human Rights Watch International Film Festival.


Services available for growing disorder
A good story about John Taylor (23) who serves as a volunteer DJ at Marshall’s WMUL radio station, a placement arranged by the Autism Services Center in Huntington. Dr. Ruth Christ Sullivan, executive director.of the center, was the first elected president of the Autism Society of America (1968-1970). Her son Joseph is known as one of two autistic savants who inspired Dustin Hoffman’s portrayal of Raymond Babbitt in the movie "Rain Man."


Conference: Breaking Down Barriers - Creating A Welcoming Atmosphere For Worshippers With Disabilities
The notion that religious congregations are welcoming to people with disabilities seems so obvious, so natural. Surprisingly, a warm reception is not always the case.....



NY Autistic Man Gets Prison For Trying To Steal Locomotive
Darius McCollum, 39, of Manhattan, who has a lifelong obsession with trains, was sentenced to up to three years in prison yesterday for trying to steal a Long Island Rail Road locomotive from a Queens yard last year.

A Worldwide, Web-Based Radio Station for the Care, Treatment, and Recovery of Children with Autism Click for Autism One
Response/Commentary to February Autism Programs on NBC and MSNBC
Autism One Radio offers 4 hours of comment from various scientists, researchers, doctors, parent advocates etc.


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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

Aspergers Society of Ontario Workshop Series in Toronto, evenings
Monday April 11: An Introduction to Asperger Syndrome,  Dr. Kevin Stoddart
Thursday April 21: Asperger Syndrome: The School Experience, Georgina Rayner
Monday May 9:  Parenting Children with Asperger Syndrome, Fern Quint
Thursday May 19: Teens and Young Adults with Asperger Syndrome, Dr. Kevin Stoddart
Monday June 20: Financial Planning for the Future, Mary Stokes
Click for more information and registration form
Note the new Canadian book on Asperger Syndrome from Jessica Kingsley Publishers: "Children, Youth and Adults with Asperger Syndrome: Integrating Multiple Perspectives." For more information go to www.jkp.com


Friday, April 29, 2005
in Guelph
Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Guelph Services for the Autistic and OAARSN invite Ontario people who want and need to be creative in supporting good lives with and for adults who are vulnerable because of disability. We particularly want to encourage self-advocates, families and friends to take part.
  • Our concern is practical--how to plan and implement the elements of a good life for each person, learning from each other's effective strategies and success stories.
  • Our approach is comprehensive and holistic. We hope to put our minds and imaginations around various strategies, to show the connections among them, and to help persons and families think about and choose combinations that may work for them.
  • We plan a process of collaboration in discussion and sharing resources--during the conference and also beforehand and afterwards, using the OAARSN website and other media. Highlights of keynote, workshops and poster presentations will be recorded and edited into electronic and video resources to share with people and groups who cannot attend.  
  • Click for planning updates and conference program 

April 28 – 30th 2005 in Ottawa

National Safety Symposium: Crime Prevention and Independent Living

The Canadian Association of Independent Living Centres (CAILC) is holding a National Symposium, April 28 – 30th 2005 in Ottawa.  CAILC will partner with the Ottawa Police Services, who are celebrating their 150th anniversary in 2005.  The funding for this project is through the National Crime Prevention Initiative.

This Symposium will bring persons with disabilities together with municipal and provincial/territorial leaders, crime prevention experts, and first responders to discuss the issues and programs that affect the ability of persons with disabilities to live independently and safely in their own communities. It will foster an integrated and comprehensive approach to crime prevention and Independent Living.

We will showcase crime prevention and Independent Living strategies and highlight programs from across the country.  There will be time to share ideas and expertise, create awareness and educate, and facilitate activities and partnerships from all areas of Canada.

Watch for announcements and registration information on the CAILC website in November at www.cailc.ca



Saturday, May 7, 2005, 10am-3pm
Connections 2005: the 6th annual resource fair for persons with disabilities
Meet representatives from Peel and Halton service agencies!
Ste. Famille Secondary School, 1780 Meadowvale Blvd, Mississauga
Click for flyer
Click for application form to hold a display


Saturday, May 7, 2005, 9am-3pm, in Chatham
Autism is Treatable: Biomedical Treatments for Autism
Click for brochure



Sunday, May 15, 2005, in Milton
"Run for Rett"
Click for more details


May 26-29, 2005,
in Chicago

Autism One Conference in Chicago
Features four major tracks to help parents and professionals make the most informed choices and decisions:
Biomedical Treatments
Behavior / Communication / Education Therapies
Complementary / Alternative Treatments
Government / Legal / Personal Issue


May 29-31, 2005,
in London
"Creating a Community that Works for Everyone"
Community Living Ontario 2005 - 52nd Conference
and AGM
Hilton London Hotel, London, Ontario.
Contact:
Shirley Yuen, Conference Coordinator,
e-mail:
shirley@communitylivingontario.ca,
tel. 416-447-4348, ext. 226  
http://www.communitylivingontario.ca/



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

Transforming Ontario's Developmental Services
The decision of the Ontario Government to commence a process of transforming services it funds for people with developmental disabilities is an opportunity for all concerned about present inequities and, more positively, for all to plan and implement better lives in people's home communities. Click for reports and links from 2004.

The Ministry has hosted a series of six expert policy forums on the transformation of developmental services in Ontario in conjunction with various partners.

  • Specialized Resources
  • Residential Options
  • Citizenship and Advocacy
  • Quality Assurance
  • Funding Models
  • Supporting and Strengthening Families 
Here are links to reports on most of these forums. The first three reports are by Nancy Cherry, our ASPIRE Advocate.

Policy Forum on Citizenship and Advocacy

Policy Forum on Funding Approaches for Developmental Services


Policy Forum on Supporting and Strengthening Families

Policy Forum on Residential Options

Policy Forum on Quality Assurance



John and Anne Toft describe their success with Ottawa Resolution Service for Persons with a Developmental Disability, in getting help for their son of 35. Their difficultt experiences over the past four years illustrate both the lack of capacity in the system and the absence of "portability" of entitlement to funding and services when a family moves from one part of Ontario to another.


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BOOKS, WEBSITES AND OTHER RESOURCES


Women from Another Planet: Our Lives in the Universe of Autism
"Taken as a whole, this book is amazing -- and I'm not saying that just because autistic people wrote it. . . I read it and it gets into my life as a whole person and an autistic woman, not just the bits and pieces people want to hear about when they read autism books. Nobody in the book has a life precisely like mine, but somehow it doesn't matter -- somehow the most important internal parts are represented. It blends the personal, medical, and political effectively and gracefully. Most books about autism, even the personal ones, look mainly at our brains and "symptoms". This one is not so limited by convention. It looks into our lives and souls."

New Book Covers Autism in Plain Language
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder and Other ASDs (published by Penguin, Sept 2004) by Chantal Sicile-Kira,
Sicile-Kira taught autistic adolescents, then worked as a case manager providing information to families of children with developmental disabilities, including autism before having a child with autism. Living and raising her son, who now 15 and severely autistic, in three different countries forced Sicile-Kira to sharpen her resource finding and analytic skills, and this clearly shows in her book. As one parent put it "Sicile-Kira understands that families have been starved for information presented in a logical format without prejudice or condescension and this book delivers on all counts."

neurodiversity.com
Autism, Math, Engineering & the Computer Industry


Two Good Ideas from the The National Autism Society (UK)
PARIS 
PARIS (Public Autism Resource & Information Service) is a new online service provided by the NAS. It will provide UK-wide database designed to help people with autism (including those with Asperger Syndrome), their families and the people who work with them professionally to find out more about the services available to them.

The Autism Alert card
Developed in consultation with adults with autism and parents, the Autism Alert card can be carried by a person with autism and enables them to identify their needs in situations where they may find communication difficult such as a supermarket, a railway station, or with a policeman.
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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 perceptions, problems and success stories, if you think others might help or benefit.


The Silent Spring

The hum, the grind, the music beat--
  They start to surge in force
Until the bang hits in the ear,
  And one escapes the source...
 
The source is the environment
  Where sounds are uncontrolled;
And yet when asked to ease the strain,
  The quest is seen as "cold".
 
As there is no alternative
  Than to escape the bang,
It's like one's trying to escape
  The bullet and the gang...
 
Once out, and far away, relief
  Is felt, but now alone,
The individual must face
  A life next to a stone.
 
That stone is not a social byte;
  But humans crave to be
Connected to another kin
  Through their humanity.
 
So as the person, who begs peace
  And quiet times, essays
To reach out to the world, he finds
  That time is but delays...
 
Delays in understanding peace;
  Delays in silent form,
Delays in seeking inner strength,
  Before the silent storm.
 
But these delays do not annul
  The want of reaching out
To others who have felt the peace,
  And put aside the doubt.
 
As more souls put aside the doubt,
  And listen to their heart,
The silence will increase to force
  The noise too, then, depart...
 
               -Brian Henson©2005

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