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
22 March 2004

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NEW CONTENT ON OAARSN'S WEBSITE
 

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. 

We are trying to take a snapshot of the generalized situations and support needs of adults (or older teenagers) with autism. It's 14 years since a survey of adults with autism was taken in Ontario, and much has changed in that time.

We urge you, as an adult who lives with autism or as a parent, caregiver or friend, to complete the survey and submit it online. This is a chance to be counted--confidentially. The information gained in this survey should help in obtaining formal and informal supports for yourself and others. If all or most needs are being met, it's great to know this too. If you completed and submitted a survey in our pilot phase, you don't need to do so again, unless your circumstances have changed and you wish to record the new information.

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. It is interesting and valuable to consider experience and quality of life in relation to a range of options and possibilities.

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 numbers of adults with autism in various regions.

Click for the full "long-form" AANS survey
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 to: gbloomfi@uoguelph.ca
Click for more information about the surveys
 

Lessons Learned from Andrew's Life with Autism
Read about an Ontario man whose life has improved in adulthood.
 

Please note the wealth of news, announcements and other links in past OAARSN News Bulletins that are archived on our website. Click for the list of earlier OAARSN bulletins.

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AUTISM IN THE NEWS

Canadian News

Ottawa family fights for help for autistic son
Anne and John Toft want their son, Adrian, to be able to live in his own apartment again. Three years after moving with his parents to Kanata from Red Lake in northern Ontario where he had a job and apartment, Adrian Toft is living in his parents' basement. An article from the Ottawa Citizen.

Toonie for Autism Day 2004
Information from the Autism Society Ontario
 

General Autism News

 
Generation Fragile X: Family Lives With Genetic Disorder Affecting Two Children
A good account of the issues for a Connecticut family with two children on the autism spectrum.


Technology used in autism study
University of Central Florida study to equip autistic youths with mobile technology in an effort to tap into their largely unmapped cognitive world and reduce amount of job supervision people with disabilities need.

'Do I have to go to school today?'
Jacqui Jackson has just pulled Luke, her son with Asperger Syndrome, out of school for good. Mainstream education does not have to be the only way forward, says Jacqui, after the recent realisation of how debilitatingly unhappy her son was at his school.  "Luke struggled not only with remembering to write down homework, but also with the concept of homework - school being for school and home being for home. After trialling many methods, accommodations were made so that extra work was done at school and the teachers wrote in a diary what he was to do. Seems perfect, eh?!"
Sadly these accommodations did not work. Read more, and find out why Jacqui stands by her decision: 
Jacqui and Luke Jackson featured in BBC TWO's 'My Family and Autism' last year.  Luke famously wrote 'Freaks, Geeks and Asperger Syndrome', and can occasionally be seen writing for 'Ouch!  Read his back to school article from last September.

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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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Kerry's Place Autism Services - Guelph-Wellington Area 
Social Groups and Family Support Meetings, Winter-Spring 2004

Click for full information on Kerry's Place events in Guelph-Wellington
To register please call J. Timmins @ 519-763-5812. 
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Wednesday March 24th, 10:00 am-noon, in Richmond Hill
Do you support an adult with ASD?
Are they living a fulfilling life, their days spent in meaningful-to-them activities?
Are appropriate day supports in place?
What barriers have you / are you encountering?
Have they ever been requested to leave an 'adult day program' due to 'behaviours'?
Do you know other families facing similar issues?
Would you like to meet each other to brainstorm potential solutions?
Building a future is easier to do with a group.
Meeting facilitated by Lynda Beedham, Regional Support Leader, Autism Society Ontario, York Region
Loyal True Blue and Orange Home building, Meeting Room B 07
11181 Yonge Street, Richmond Hill, ON
All self-advocates, parents and professionals welcome.
Please RSVP to asoyork@axxent.ca or voicemail 905-780-1590
 

March 25, 2004, from 7:30 pm, in Toronto 
Free presentation on
Strategies and tips for applying for Ministry funding
(such as Special Services at Home, Assistance for Children with Severe Disabilities, and others)
Geneva Centre (112 Merton Street) in Toronto
Sponsored by the Toronto chapter of the ASO.
Presented by ASO Regional Support Leaders Liz Cohen and Lynda Beedham.
 

March 26 and 27, in Calgary
Breakthrough Autism and Aspergers Conference
featuring speakers Stephen Shore and Lisa Lewis
 

Saturday March 27, 2004, in Toronto 
Promoting Functional Speech in Children with Autism with Emphasis on the Kaufman Assessment and Strategies
... from Brookfield Programs
More information
 

Saturday March 27, 2004, 9:00 a.m. – 4:00 p.m., in London
CHOICES, OPTIONS AND OPPORTUNITIES: GETTING TO THE PLAN
This is a practical interactive forum with stories from families of people with disabilities who
are supported in non-traditional ways, to have lives of their choosing after leaving high 
school, and how they do it. You will learn to put together an individualized personal plan for
your family member, outlining their desires for the future, along with the individualized
supports required (including funding) to facilitate their continued success in the community.
Hosted by London Family Network and other local community organizations.
Community Living London, 190 Adelaide Street South, London, ON
For more information contact Realizations Training & Resources 519-433-2387
 

Tuesday. March 30, 2004, 6:30 – 9:30 p.m., in London
The Individual Education Plan: 
Kathy Schaffer – Education Officer, Ministry of Education will explain the Ministry of Education IEP standards and how the plan should be written to most effectively support students to be successful in their learning.
3rd Floor Boardroom, Siskinds, The Law Firm, 680 Waterloo Street, London ON
For More Information and/or to Register  - Call Angie Kehoe 519-672-2251, ext. 363
 

Friday, April 23rd, 2004, in Toronto
The 5th Annual New Haven Learning Centre Conference
Manulife Financial Building, 200 East Bloor St.
Keynote Speaker: Dr. Patricia Krantz, Executive Director, Princeton Child Development Centre
Other presenters will include Dr. Joel Hundert, Dr. Len Levin, and Dr. Bridget Taylor.
Registration information to follow.
 

April 30 - May 2, 2004, at Gananoque
The Art of Advocacy: Every Parent is an Advocate
FAO/IAI  Annual Conference
Key Note Speaker:  Judy Finlay on "Why a strong family Voice is Essential to Advocacy
in Ontario."  Click for full details
 

May 6-8, 2004, in Perth Ontario
'Music Therapy in the the Spirit of Community'
The Canadian Association for Music Therapy hosts its 30th annual conference
Click for information about the conference and registration materials 
 

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
 

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

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ANNOUNCEMENTS OF SPECIAL PROJECTS
 

DOOR (Disability Ontario Online Resource) To Adulthood
“Transition Ontario” is a large, ongoing project to develop and evaluate an online resource service for the transition to adulthood, to support young people aged 16-19 years. The project uses a participatory-action research (PAR) approach, in which all participants consumers, researchers and professionals collaborate and join in the development, implementation and evaluation process. The overall outcome of “Transition Ontario” is a consumer-driven, community-based and interactive online resource called “DOOR (Disability Ontario Online Resource) To Adulthood” that meets the needs of people in Ontario who are interested in the transition to adulthood for youth with disabilities. The “Transition Ontario” project will improve access to quality information and will facilitate communication and networking about the transition to adulthood for youth with disabilities in Ontario.

"The “DOOR To Adulthood” website is going to be accessed through Ability Online. We would like to know what you would like to see on the website. We are holding focus groups to serve as discussion boards for participants to share ideas in developing the information for the website. We are also connecting with people via email and our listserv. We want to hear from people from across Ontario" Click to read more
If you want to help with Transition Ontario, or want more information about the project, please call toll-free (800) 363-2440, or (416) 425-6220, ext. 3207, or e-mail transitionontario@ablelink.org
 

PLEASE NOTE
"We are looking for anyone (youth, adults, parents, or service providers) interested in sharing their expereince to create "Tips and Strategies" for a successful transition to adulthood for youth with disabilities, that will be on the D.O.O.R. (Disability Ontario Online Resource) 2 Adulthood website. This is part of the Transition Ontario project, posted from January, 2004.
Date: March 19 - April 8, 2004
City & Location: Focus groups or personal interviews can be done in person or over the phone.
Contact: If you have any questions or would like to participate - please email omarana@mcmaster.ca, or call (905)-849-8219"

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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
 

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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HELPFUL RESOURCES

Visit the Autistic Society website
Launched in England by the parents of a young son with autism, this ambitious site offers many features. Its "mission is to unite parents, families, friends, people with Autism and professionals by creating a strong, supportive community worldwide. Sharing first hand knowledge, information, news and research about Autistic Spectrum Disorders." Brian Henson of Ontario, who was diagnosed with autism in middle age, writes a regular column for this website.  Read Brian's columns
 

"Mental health in people with autism and Asperger syndrome: a guide for health professionals" 
A new booklet by Christine Deudney and Dr Amitta Shah, published by The National Autistic Society (UK).
The booklet covers the mental health problems to which people with autism and Asperger syndrome are most vulnerable, especially in late adolescence and early adult life: depression; anxiety; obsessive compulsive disorder; schizophrenia and catatonia. It provides a helpful introduction to the symptoms, diagnosis and treatment of these mental health problems and will be a beneficial read for anyone working in the health sector, as well as for people with autistic spectrum disorders and their families.
To order a copy of "Mental health in people with autism and Asperger syndrome: a guide for health professionals", which is priced at £1.50 plus postage & packing, contact Barnardos Despatch Services on 01268 522 872 or beverley.bennett@barnardos.org.uk

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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
 

Lessons Learned from Andrew's Life with Autism
Read about an Ontario man whose life has improved in adulthood.
 

A question to OAARSN: can you help?
Can adults with autism, who have average or above-average IQs, ever be delusional or fantasy prone? I'm an adult & was diagnosed with schizoaffective-disorder a few years ago. I was suffering from delusions & I have major-depression. I also wonder if I have some cognitive impairment. I've never been diagnosed as autistic, but I've never been tested for it, either. As a child, I wasn't very social & I engaged in some repetitive behavior. I live in the U.S. Could a cognitive test differentiate between adult autism & schizophrenia? I'd really appreciate any info.
 
 

   Autistic Eddie

There was a kid named Eddie
 Who had a little bout
Of autism, ...but to his folks,
 There wasn't any doubt.

His parents were so proud of him,
 And saw his savant skills,
Although he was a wee bit wild;
 It was a test of wills.

Would they win out in training him
 To be like normal child?
Or would he show them he's the boss,
 With temper, strong and wild?

He went to school, and got his grades,
 But couldn't find no friends
Or buddies to share chats with him
 And help him 'round life's bends.

This Ed, so disillusioned, that
 About the time he's ten,
He would imagine heaven's gate,
 To start his life again!

But on the note of his strong ways,
 He knew 'bout every train,
And railway track laid down on earth;
 (They said he'd gone insane!)

He didn't care just what they felt,
 As he had his work cut
Right out for him, and he would show
 No "if", or "and", or "but".

Ed tabled in his mind all routes,
 And schedules as well;
He saw them all, each train world-wide,
 With touch and feel and smell...

This train obsession got so deep,
 His school work fell right off,
Until one day when he got one
 Deep cold and lasting cough.

'Twas then he found that trains don't do
 Quite everything he thought,
And soon he went from trains to health,
 This change was quite a lot!

But others still found Ed quite hard
 To chat with every day,
As all he talked about was health,
 From gluten through to whey.

When others started to avoid
 Ed's sheer persistent ways,
He found himself alone, not just
 For hours, but for days.

Ed could not understand why he
 Was always left outside
The "group", and he began to fear
 Their ways, and he would hide

Himself from others, lest this "group"
 Tell him a thing or two.
This fear would lead Ed far away
 From friends, but one ...or two.

An adult now, this Eddie still
 Can't understand why he
Is still shunned by the "group" so much,
 At university.

He still wants friends, but doesn't know
 Quite just how to explain
To others how he wants to be
 Their friend; it's so much pain

For him, that he is still alone,
 But for a friend ...or two,
And that's where he's in such a maze:
 Will dear Ed e'er get through?
 
        -Brian Henson ©2004
 

 
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