7 April 2003
NEW ON THE
AUTISM IN THE
Just two items this time--to
illustrate efforts at best practice on the one hand, and sad realities
on the other.
New autism guidance launched in Britain--a model
for other countries?
An expert group has published non-statutory
national guidelines aimed at improving services for children with autism
spectrum disorders (ASD). The National Autism Plan for Children (NAP-C)
makes several recommendations to help health professionals diagnose children
with autism earlier and encourage multi-disciplinary working. The plan
has been developed by the National Initiative for Autism: Screening and
Assessment (NIASA), in collaboration with the Royal College of Paediatrics
and Child Health, and the Royal College of Psychiatrists. Read
The guidelines call for all local
areas to set up ASD co-ordinating groups within the next 18 months, in
order to review existing services and identify training and resource
needs. Each local area should eventually have a trained professional
with ASD expertise and an ASD-trained teacher to set up individual education
The plan also sets out a timetable
for diagnosing the condition – suggesting that children with suspected
ASD should receive a multi-disciplinary assessment, with a key worker appointed
to the family at the start of the process. A report and feedback should
be given within 17 weeks of the start of the assessment.
In addition, the guidance recommends
that all community-based staff who work with children should be trained
in ASD awareness, so they can recognise “alerting signals” that may warrant
The plans have been published by
The National Autistic Society (NAS) on behalf of NIASA. The UK government
is due to publish its 10-year Children’s National Service Framework, which
will include autism, towards the end of 2003.
forced from home
The story from the South Bend Tribune
of how five mentally disabled men were threatened with arrest and forced
out of their home on a cold January evening. Until that night, the men
had lived quietly and peacefully in their home, working jobs to pay their
rent just as their neighbors do. Lincoln Township officials claim the building
was unsafe; others say it could be discrimination.
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.....last week to count yourself in.....
-By Kerry's Place Autism Services
-Will help shape the kinds of services
that may be provided--for children, adults and families.
Gail Hurren explaining the needs survey
See the survey
forms which you may print, fill in and mail
Tuesday, April 8th, 2003. 7:00 p.m. in Richmond
LIVING WITH ASPERGER'S SYNDROME
Gary Waleski, An Adult With Asperger
Syndrome Talks About His Experiences
Sponsored by Autism Society Ontario
~ York Region Chapter
Location : 11181 Yonge Street 3rd
Floor, Richmond Hill,
Refreshments: 30 minutes before
Presentation Start Time
Cost: Free to Member families, $
10.00 for Non-members.
Memberships available at the door,
$ 30.00 annually
Saturday morning, April 12, 2003, in Kitchener:
Planned Lifetime Networks-WWO
presents an Information Workshop:
WHOSE DECISION IS IT ANYWAY?
Living with an adult with developmental
Who can decide medical care,
personal care and financial matters?
How are these decisions made?
Capacity Assessment and Substitute Decision Making
with Elaine Atchison
information and to register
Waterloo County Chapter, Autism
a) Silent Auction on April 12th at Fairview Park
We are highlighting collectible
and antique items. We also have approx. 200
new items. We are raising
funds for summer camp for kids with ASD.
Donations or info. call our hotline
b) Cycle for Autism on June 8, 2003 to
raise funds for summer camp, education and awareness. It begins and
ends at Kitchener City Hall. There are 5, 10 and 40k routes to be
walked, run or biked. Again, same phone number.
April 16th, 2003 at 7:30pm
Autism Society Ontario - Peel Chapter
Meeting at Peel Board of Education for a panel
presentation on Adult issues and services related to Autism Spectrum Disorders.
For more info call (416) 390-9193
April 25 and 26 (Friday and Saturday):
The London Family Network and Integration
Action for Inclusion: London and Area are jointly hosting the Provincial
Conference and AGM for both Family Alliance Ontario and Integration Action
for Inclusion See more
details of the conference program and a poster
in PDF format.
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
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
May 5-10, 2003 at Ghost Ranch, Abiquiu, New Mexico
Five-Day ABCD RETREAT for 30 community
leaders on asset-based community development. JUDITH SNOW of Toronto, founder
of International Association for Inclusive Citizenship, is one of the trainers
and describes the event as a "weeklong seminar where we can explore in
depth both building contribution and quality lives with individuals from
unique differences, and building diverse and peaceful communities from
our assets." See
flyer for details
May 16 to 18 in Philadelphia:
DAN! Spring 2003 conference
here for a listing of speakers and topics as well as online registration
May 30 and 31, 2003: Second National Conference
Celebrating our achievements: Setting our sights
for conference program
Online Registration will be available
after April 1, 2003.
Metro Toronto Convention Centre
Aspergers Society of Ontario website
June 20-22, 2003 in Vancouver BC
Vela Microboard Association of British Columbia
First Training Institute
on Developing and Supporting Microboards
Learn more about:
-the intent and philosophy of Microboards;
-the practical tools needed
to develop Microboards; how to support and sustain Microboards; and
-how to assist in creating a healthy
Please note that this workshop is
for people outside BC who wish to set up a network of microboards, rather
than a single microboard around an individual.
Cost for the weekend will be $1,000.00
Canadian (approx $700.00 U.S). This fee includes: the Institute; all related
materials; on site accommodation for two nights/three days; and all meals
from dinner Friday through brunch on Sunday. For
more information or
e-mail Linda Perry and look
up Vela website
Open Windows Essential Training:
Opening Windows of Hope for Children with Developmental
June 21 & June 22, 2003
Ryerson University, Toronto, Ontario, Canada
The first conference of its kind
in Canada .....
"Open Windows Essential Training"
is presented by the International Child Development Research Center (ICDRC)
in conjunction with the Autism Canada Foundation.
This conference will teach you how
to integrate Biomedical, Behavioural, Nutritional and other effective treatment
options in a "whole approach" therapy style, so that you can help maximize
the potential of individuals living with Autism, PDD and Related Disorders.
Guest Speakers include:
Bradstreet, M.D. F.A.A.F.P
Dr. Jerry Kartzinel,
Dr. Lynda Thompson
..... and more ....
In Open Windows Essential Training,
Medical Researchers, Behaviouralists, Parents and Clinicians participate
in an interactive learning experience designed to educate and equip you
for the challenges presented by Autism and Related Disorders.
Click any of the links below for
additional information and to find out how to register
FOR AUTISM : Help Solve the Puzzle
Beginning on July 6th, 2003, John
Keating and Luc Vandeermeeren, both fathers of children with autism Autism
Spectrum Disorders (ASD), will embark on a bicycle journey that will take
them from one end of Canada to the other. They will begin the cycle in
Vancouver, British Columbia and end in St. John’s, Newfoundland. It will
take them 8 weeks to complete this journey. They will stop in many cities
along the way. Our goal is to promote awareness of Autism Spectrum Disorders
(ASD) and raise $1,000,000 in Canada for ASD research through an annual
cross Canada Cycle for Autism. The Cycle will begin July 5 to August 24,
2003 with fundraising events held in various cities across Canada including
Vancouver, Calgary, Regina, Winnipeg, Toronto, Montreal, Halifax and St.
John’s. These events will not only raise funds but increase public awareness
as well. Please click on the link above to reach the project's website
which is now under construction.
See also: Funding
Issues--in OAARSN Discussion Boards and Topics. Press the Communications
bar on OAARSN’s main page
then choose Discussion Area
The National Fragile X Foundation
has asked us to provide a link to its FragileX
website. Fragile X syndrome is the most common, known cause of autism.
Fragile X is a single-gene disorder on the X chromosome and can be inherited
from either one’s mother or father. The DNA blood test for fragile X is
better than 99% accurate. The Center for Disease Control conservatively
estimates that 50,000 to 100,000 Americans are fully affected and that
there are approximately ½ million to 1 million carriers. Fragile
X syndrome is considered to be an autism spectrum disorder.
National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119-0488, USA
DISABILITY AND ADULT LIFE NEWSLETTER
Online Newsletter by Jackie Marquette
Author, Educator, Researcher
PURPOSE OF NEWSLETTER
I am very blessed that my son Trent
who is 26 years old and who has autism has found a purposeful, happy independent
life for over two years now. I am offering this online newsletter to explore
discoveries, options, and coping strategies with other families as we all
journey along the road to community living for our adults with autism and
other disabilities. Often what families need most are ways we can help
ourselves while helping our adult with a disability journey to independence.
Helping families help themselves is an important part of the process.
A MAN WITH AUTISM FINDS INDEPENDENT LIVING
WHAT A FAMILY NEEDS TO KNOW
AUTISM AWARENESS MONTH – TRENT’S CONTRIBUTION
ABOUT JACKIE MARQUETTE, AUTHOR, AND EDUCATOR:
About her book see Independence
If you want to receive this online
newsletter please email Jackie at: Jam4independence@aol.com
FROM THE FRONT
HELP AND SHARING EXPERIENCES
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 firstname.lastname@example.org for OAARSN.
Or you might use the OAARSN Discussion Board, reached by pressing the Communication
bar on our main page