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. 

Please note that this service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. 
 

 
NEWS BULLETIN
23 May 2004

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NEW CONTENT ON THE OAARSN WEBSITE

Supporting Adults with Autism Spectrum Disorders in Ontario
Report of the conference, sponsored by Autism Society Ontario, that was held in Guelph on 5 May 2004. The 71 persons present were facilitated by
Dr John Lord to share ideas about needs and priorities. A steering committee group is meeting in the next few weeks to recommend ways in which ASO may advocate for adults with ASD.

Farm Community for Persons with Autism Spectrum Disorders?
The idea of a farm community centre to support families and persons with ASD in Waterloo-Wellington region is in the air.
Read a preliminary vision statement of core values, essential functions and quality-of-life features
and a
report of a good interest meeting in late April, with background information. General discussion is invited.
The next opportunity to discuss the ideas in person follows the Annual General Meeting of Waterloo Wellington Autism Services in Kitchener on Monday evening, 31 May 2004. See announcements of events.


Adult Autism Issues in Waterloo-Wellington
The latest issue --No. 25, May 2004-- of this newsletter has been posted.

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ANNOUNCEMENTS OF EVENTS

See details of more events on OAARSN
Bulletin Board and Calendar, and 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

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May 27 – 30, 2004, in Chicago

Autism One 2004 Conference "the Most Comprehensive Conference on Autism Ever Assembled" 
Click for more information
Click on website

Monday, May 31, 2004 in Kitchener
Waterloo Wellington Autism Services:  12th
Annual General Meeting
Stanley
Park Baptist Church,  31 Lorraine Avenue, Kitchener (intersection with River Road)
AGM business meeting:
7:00 to 7:40 pm. Only members may vote.
Followed at
7:45 pm by special presentation and discussion of FARM COMMUNITY AS FOCUS FOR PERSONS AND FAMILIES WITH AUTISM SPECTRUM DISORDERS?
Discussion of the potential for a farm community in our Waterloo-Wellington region.
Video “Breaking New Ground” about Bittersweet Farms, model farm community for autistic adults in
Ohio, will be shown.


May 31, 7 – 9 pm in Fergus by Kerry's Place Autism Services. 
Workshop: Introduction to Autism Spectrum Disorder
For more information, or to register, please call J. Timmins @ 519-763-5812.
Click for full information on Kerry's Place events in Guelph-Wellington 

June 8, 6:30-8:30 pm, in Guelph
Adaptive Technologies in the Classroom 
Kerry’s Place hosts Lisa Allen of Global EText Inc.

Global EText Inc. is an adaptive technology company that provides products and services to support the needs of students, teachers and parents.
Boardroom of the CMHA at 5420 Hwy 6 North, RR#5 Guelph, Ontario (Orchard Park Office Centre/ formerly Ignatius College). Please call  the Kerry’s Place Resource Centre to register at 763- 5812.

Friday, June 18, 2004, in Windsor
Autism Society Ontario will be presenting its first Stacy Lynne McNeice Memorial Lecture Award to Dr Margaret Bauman
Margaret L. Bauman, M.D. is a Pediatric Neurologist, at MassGeneral Hospital, the Director of The Autism Research Foundation and LADDERS Clinic, and an Associate Professor of Neurology at Harvard Medical School. Dr Bauman will also be guest speaker for a workshop that day. Check the  ASO website for conference details and registration information.

Sunday, June 20, 2004, in Toronto
POST-SECONDARY STUDENTS WITH DISABILITIES ORGANIZE A CELEBRATORY MARCH FOR PEOPLE WITH DISABILITIES
Toronto's first annual "Simply People: Celebrating Our Lives and Our Identities"
The march from Dundas Square to Nathan Phillips Square, followed by speakers and performances. For more information, contact: Julia Munk, VP (Equity), Students' Administrative Council, University of Toronto


July 24, 2004, in
Toronto
Autism Canada Foundation presents:
Biomedical Interventions for Autism
The most advanced information for Physicians and Parents on Autism Biomedical Treatments

Morning - 9:30 a.m to 12:00 p.m.
The Gut/Brain/Diet Connection and The Specific Carbohydrate Diet
by Canadian Researcher and Author
Elaine Gottschall, B.A., MSc.
Afternoon - 1:00p.m.  – 4:30 p.m.
“State of the Art” Biological Recovery Strategies for Autism
by autism specialist Jeff Bradstreet, M.D. FAAFP
Alumni Hall Room 100, 121 St. Joseph Street, St. Michael’s College, University of Toronto  
$85.00 per person Payment by PAYPAL, Cheque (prior to July 4th ), or Faxed Visa Form
Registration form available at www.autismcanada.org,
$100.00 Cash at door (space permitting)
$3.00 surcharge will apply to creditcard and PAYPAL payments.
For info call:  Cynthia @ 905-331-4480  Fax: 905-331-4662


Geneva Centre International Symposium

is scheduled for November 10, 11, 12, 2004 at the Metro Toronto Convention Centre. The Symposium 2004 brochure has been mailed out and is also available on our website.This year you have the option to register on-line at www.autism.net.

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SPECIAL ANNOUNCEMENTS/SPECIAL PROJECTS


New Autism Resource Centre for Guelph-Wellington
Kerry’s Place Autism Services is pleased to announce that the Wellington Resource Centre is now open. Books and resources relating to Autism Spectrum Disorder available for Use of Families, Individuals, and Community Members. Computers, printers and a laminator are available to develop additional resources, such as visual aids. Access to Boardmaker Picture Communication Symbol Program is available. Family resource days will be available one day each week. Please call to book an appointment.
Kerry’s Place Autism Services, 5420 Hwy 6 North, Suite 124, RR#5, Guelph, ON, N1H 6J2
Phone/Fax (519) 763-5812  jtimmins@kerrysplace.org


London Speech and Language Centre:
FOCUS: May is Better Speech and Hearing Month

Speech and language difficulties are often the first noticeable sign of a learning problem in children. Though many people think that communication disorders only manifest as incorrect pronunciation (articulation), this is only one of many possible symptoms. As children grow older, expressive and receptive language difficulties affect literacy and learning skills, as well as social  skill development. 
 
Read on for information on diagnosis and tips for how to handle speech and learning disorders.
Common signs that aid in early identification of speech and language problems in children.


The Autistic Adult Picture Project

is an effort to introduce Autistic Adults to a world that seems to think that all autistics are children,
If you are 18 years of age or older and on the Autism Spectrum, you are invited to join the Canadian-based "A2P2" website at http://www.isn.net/~jypsy/AuSpin/a2p2.htm

An idea for a one-day conference on
CREATIVE LIVING SUPPORTS FOR VULNERABLE ADULTS

Creative living supports that are person-centred and family-based and invite and facilitate collaboration and community engagement:
- In Guelph in September-October 2004
- Keynote address integrating various elements
- Workshops on four areas: Supports for Individuals, Homes and Living Spaces, Work and Leisure, and Making Creative Options Work in Ontario.
- Poster sessions and brief presentations on a whole range of living supports from which persons and families may choose the particular mix that suits their situations and needs
- Informal connections and discussion
What do you think?
Whether this can be organized (by GSA in partnership with other organizations) depends on your response. Your perceptions are important. Please respond by email to gbloomfi@uoguelph.ca

OAARSN's Adult Autism Needs Survey has been revised after a pilot test period. We have also taken the opportunity to adapt the survey to new SNAP software. 

OAARSN is conducting this survey as a free public service. Private information about individuals will not shared with or passed on to any agency or researcher. If you ask to be connected to our ASPIRE project, you may authorize your personal data to be shared with the ASPIRE advocates. 

We offer two versions. It's important for everyone concerned with autism in adulthood to complete at least the short-form survey. 
1. The more detailed "long-form" survey takes about 25 minutes to complete. It has questions about abilities and challenges, treatments and therapies, quality of life, and planning for the future. This is for persons and families who are actively concerned to achieve the best possible quality of life in adulthood. Click for the full "long-form" AANS survey

2. The more basic short-form survey takes only 5 minutes to complete. It's helpful that planners, funders, advocates and agencies can be aware of the broad patterns of need. Click for the short-form survey

We hope you will respond online. However, if you prefer to complete and mail a paper survey, please request this by email: gbloomfi@uoguelph.ca
Click for more information about the surveys 

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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

The Future of Adult Services : Managing New Directions in Uncertain Times
a series of teleconferences organized by TASH
* Creating High Energy Organizational Culture -Thursday, May 20th 
* Out-Maneuvering the System - Thursday, May 27th
* Using Self-Determination Tools to Achieve Flexible Supports - Tuesday, June 1st
* CMS's Independence Plus Initiative - Tuesday June 8th
* Recapturing Person Center Plans Thursday, June 10th 
* Building Meaningful Daytimes - Tuesday, June 15th 
* The Real Challenges of Individualized Supports - Wednesday, June 16th
* Paying Customers Are Not Enough - Tuesday, June 22nd 
These exciting sessions take place over the telephone! You can call in from home, work, or on the road! Only one telephone line may dial in per registrant. You can register as an individual or as a site. If you register as a site and have access to a speakerphone, or have the ability to do internal conferencing, you may have as many participants as you would like listening to the session, and you will also receive an audiotape of the session as well! If you are interested in a topic but cannot participate at the scheduled time, just register anyway and dial in to listen to a replay of the session at your convenience!
The topics are listed below. For more complete information, including registration rates, please visit : http://www.tash.org/teleconferences/index.htm
For additional information please contact TASH
29 W. Susquehanna Ave, Suite 210
Baltimore, MD 21204
410-828-8274 x 103
Fax: 410-828-6706
www.tash.org
 

Breaking The Barriers is now officially online!
A declaration with and for people who are often misperceived as being incompetent or less able because they do not speak. The vision: That all people with disability labels, who do not communicate through speech, have means of communication which allows their fullest participation in the world; that people can communicate using their chosen method; and that their communication is respected by others. And that Facilitated Communication will be accepted in practice and policy as a legitimate augmentative communication method. "We need support and help to clear away the barriers that make it hard or impossible for us to communicate and to actively participate in decision-making and public policy that affects our lives. We want to work collaboratively with other advocates to gain support for the right to communicate."

Sign on to the: RESOLUTION ON THE RIGHT TO COMMUNICATE
 

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BOOKS AND OTHER RESOURCES

The Development of Autism: A Self-Regulatory Perspective, by Thomas L. Whitman
320 pages ISBN 1 84310 735 X pb £15.95/US$22.95
Tom Whitman proposes a new developmental theory of autism that focuses on the diversity of characteristics associated with autism, and how these develop over time. This theory is reconciled and integrated with contemporary theories of autism, including the social, cognitive, linguistic, sensorimotor and biological perspectives, giving an encompassing and up-to-date view of autism theory. The broader societal context in which autism emerges is also explored along with its impact on the family. Whitman draws from extensive clinical experience to examine common education and biomedical interventions and presents recommendations both for practical approaches to the everyday challenges of autism, and for future research. This comprehensive book is essential reading for parents, students,
therapists, researchers and policymakers eager to improve or update their understanding of autism.
Further details can be found on the JKP website:
http://www.jkp.com/catalogue/book.php?isbn=1-84310-735-X
You can also order a copy of the book online from this page.

Ben's website
A year or so ago, we noted the publication of Finding Ben: A Mother's Journey Through the Maze of Asperger's by Barbara Lasalle. The book links to a website www.aspergerjourney.com which is maintained by Ben, with regular journal entries written by Ben, as well as Asperger information..

Lipids and Autism Spectrum Disorder
A recommended summary of issues in the relationship between nutrition and autism.

A good site for information about nutrition

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. OAARSN receives 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 

Perspectives on Living with Autism as an Older Adult

Two essays by Brian Henson of Brantford

Approaching Retirement Years 

There is much more concern today about adolescents and young adults on the autistic spectrum than there was even ten years ago. The discussions and issues range from social cues at high school and college, when and how to tell others about being a person on the autistic spectrum, and issues involving interviews for a job. This shows progress from the days when autism was considered nothing but a childhood disease, and there is much more awareness of not just autism, itself, today, but of other aspects of the autistic spectrum, especially Asperger's Syndrome. 

With the knowledge that these conditions do not go away just with time, and are life-long modes of seeing life for many, even if accompanied by severe autistic problems in some, the discussions still seem to be limited to those up to about forty years of age. When a person on the autistic spectrum reaches fifty, and, due to limitations in dealing with others, or due to some other physical or economic limitation, this person is put on disability income, what are the perspectives for this person? Are each of these persons just left to fend for themselves, and take whatever comes (including a disability income that has not changed in Ontario in ten years)?  

Even those over fifty with a job, but looking forward to retirement--are they still shunned by those around them for their behavior and mannerisms, while they try their hardest to "fit in" to the pressures needed to keep themselves afloat, economically?  

What are the prognoses of these persons on the spectrum, as far as retirement? What about the few who cannot look after themselves, and their parents are concerned with their safety and well being after the parents are deceased? 

What safeguards, if any, could be proposed, to enable those persons on the spectrum over fifty to feel secure about their own future, despite the current support that they are getting from family, friends, or through government subsidy? Could these safeguards be put into law so that individuals or parents do not have fears about the future, as far as possible abuse from others who view these people as devalued individuals that are a "burden" to society?


A Housing Issue for Adults with Autism

In January 1995, at the age of 93, my mother passed away, leaving an estate for her five children. Our father had passed away previously. Being a person on the autistic spectrum and unable to complete college work or find a job in my early fifties, I was just going into Family Benefits (as it was known back then) for income support, and was told that I could invest this income in a principal residence and a vehicle of a certain value. I got the vehicle, and started looking for a principal residence. It was not until the fall of 1995 that I found a property that suited me, both in location and price. It was a duplex, with a lot of work to get it up to current standards. I had 25% down payment, so I did not need a CMHC mortgage. 

However, because of my income status, as a person with disability income, I could find no place to get a mortgage for the remaining 75% of the value of the property. After hearing about this situation, a friend (whom I had met at a local college, and was familiar with real estate and mortgages) offered to get a mortgage for me so that I would not use up the estate income before I would, again, qualify for what would be ODSP.

This friend and I signed an agreement acknowledging me as the rightful owner of the property, and as long as the payments for the mortgage, taxes, and insurance were deposited to this friend's account every month, the property would be mine, legally, even though, for mortgage purposes, it was registered in the friend's name. I heard on the media about money going from the federal government to CMHC to help low-income people to fix up their homes, and to encourage builders to remodel homes for the physically handicapped.

        First, I started to clear the interior of the house at the front (the part to be rented as a one-bedroom handicap unit) to get it ready for the home renovations by gutting it back to the bare walls, and removing non-supporting interior walls. 

I applied for the CMHC funds (known as RRAP), but was told that, because the property was not registered in my name, that I could not apply for these funds (as grants, and as low-interest loans). In order to get the property in my own name, I have applied to various mortgage brokerage firms, and despite having paid for three appraisals, no mortgage company has been found who would be willing to take the mortgage and let me have the property in my own name. The front of the house remains like a barn, with no improvements in sight, and this issue has been going on for eight and a half years. Also, the CMHC representative said that I could get up to certain amount (depending on the municipal allocation by CMHC for he year), and, as this representative viewed it, the cost of fixing the house up to CMHC standards would be far beyond this amount, and ay work started on such a project had to have the entire building up to CMHC standards within one year, or no funds would be paid. 

Is there any solution for this or other similar issues affecting people on the autistic spectrum who have housing problems?

 


 
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