ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
14 November 2005

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GENERAL AUTISM NEWS


What Accounts for The Recent Rise in Cases of Autism?
A nice synthesis of theories about the complex disorder.


NIH Joined by Advocacy Groups to Fund Research on Autism Susceptibility Genes

Five institutes at the National Institutes of Health (NIH) and three private autism organizations have formed a consortium to pursue their common goal of understanding a devastating disorder. This public-private partnership has funded five grants representing three projects to identify genes that may contribute to the development of autism and Autism Spectrum Disorders. The National Institute of Mental Health will administer the $10.8 million awards over the next five years.
The participating NIH institutes are The National Institute of Child Health and Human Development (NICHD), The National Institute on Deafness and Other Communication Disorders (NIDCD), The National Institute of Environmental Health Sciences (NIEHS), The National Institute of Mental Health (NIMH), and The National Institute of Neurological Disorders and Stroke (NINDS). The voluntary organizations contributing funds are Cure Autism Now (CAN), National Alliance for Autism Research (NAAR), and the Southwest Autism Research & Resource Center (SARRC).


Autism problems explained in new research (report from Australia)
New research from Melbourne's Howard Florey Institute helps to explain why children with autism spectrum disorders (autism) have problem-solving difficulties. Using functional magnetic resonance imaging technology (fMRI) the Florey scientists have shown that children with autism have less activation in the deep parts of the brain responsible for executive function (attention, reasoning and problem solving).


Genetic Cause Of Speech Defect Discovered
Researchers at the University of Toronto (U of T), Capital Health's Stollery Children's Hospital in Edmonton, Toronto's Hospital for Sick Children and their international collaborators have discovered a genetic abnormality that causes a type of language impairment in children -- a discovery that could lead to isolating genes important for the development of expressive language.


Brain deficits found in relatives of autism sufferers
People can have physical brain abnormalities similar to those found in autistic individuals without having the disorder themselves. Results of two studies were report at a conference this past weekend. Brain scans show striking similarities between the brains of autistic patients and those of their non-autistic parents and siblings.



The Age of Autism
Columns by
Dan Olmsted for the Washington Post and UPI. "Autism is a term used to describe a condition which affects the immune, gastrointestinal and central nervous system."
The Age of Autism: The Amish Elephant
The Age of Autism: Amish genes
The Age of Autism: `My child is toxic`
The Age of Autism: Connecting new dots
The Age of Autism: Mercury goes to work
Two columns exploring the idea that various ethyl-mercury applications from the 1920s, for fungicides and later for vaccines, may have been potent factors in triggering autism.
The Age of Autism: `The facts say maybe'
The Age of Autism: Showdown in Santa Fe
The Age of Autism: More sick kids
Eight case histories from parents illustrating this generalization and lamenting the lack of knowledge among health professionals.


Asperger syndrome from childhood into adulthood

A major article by Tom Berney in Advances in Psychiatric Treatment (2004) 10: 341-351,
written in the British and European context.

Abstract:
"Asperger syndrome, a form of autism with normal ability and normal
syntactical speech, is associated with a variety of comorbid psychiatric disorders. The disorder is well known to child psychiatry, and we are beginning to recognise the extent of its impact in adulthood. The article reviews the diagnosis and assessment of Asperger syndrome and its links with a wide range of psychiatric issues, including mental disorder, offending and mental capacity. It also describes the broader, non-psychiatric management of Asperger syndrome itself, which includes social and occupational support and education, before touching on the implications the disorder has for our services.
"Asperger syndrome comes not only with its own characteristics, but also with a wide variety of comorbid conditions such as depression, anxiety, obsessive–compulsive disorder, attention-deficit hyperactivity disorder (ADHD) and alcoholism, and relationship difficulties (including family/marital problems). It may predispose individuals to commit offences and can affect their mental capacity and level of responsibility as well as their ability to bear witness or to be tried. The syndrome can colour psychiatric disorder, affecting both presentation and management, for children and adults across a wide range of functional ability. Families have taken an active legalistic approach, alleging misdiagnosis and mistreatment and demanding clarity as to the relationship between Asperger syndrome and other diagnostic concepts."
From the conclusion:

People with Asperger syndrome fall into therapeutic limbo, too able for learning disability services and foreign to general psychiatry. A political groundswell, driven by families, is pressing for better psychiatric services that are sufficiently familiar with the disorder for it not to disadvantage patients. Psychiatric resources were insufficient even before autism achieved ‘popularity’. Consequently, it is unrealistic to hope for separate specialist facilities for out-patients, let alone in-patients, except at a regional level. Existing resources will need to become autism-friendly, something that is achieved by staff training as much as by environmental change.


Controversy over vitamin jab for autism
Dr James Neubrander, who will discuss the injection at a conference on autism in Edinburgh this week, has a private clinic in New Jersey where he says he has given more than 75,000 shots of methyl cobalamin B12 since May 2002, with, he claims, 94% of children showing improvement.
Methylcobalamin B12 is a type of vitamin B12 produced naturally by bacteria in the colon and then absorbed. Some scientists believe that people with autism are unable to absorb this material.


Help needed for the severely autistic: experts
Autism experts gathered in Moncton say the New Brunswick government needs to find better housing options for people with severe forms of the disorder. The province recently housed a severely autistic 13-year-old boy in a "cottage" on the grounds of the Miramichi Youth Jail, before Family and Community Services Minister Tony Huntjens approved a plan to send him to Maine at a cost of $300,000 per year. A conference in Moncton this week is hearing from a variety of people in the autism community who agree there needs to be a better way to deal with the problem.


British mother spared jail for killing autistic son
The tragic story of a mother who admitted killing her grown-up son, who had Down’s syndrome and autism, when she came “to the end of her tether” after caring for him for 36 years.

Justice system 'ignores' autism
People involved in the administration of criminal justice must raise their awareness of autism and Asperger syndrome, a leading UK charity says. Research by the National Autistic Society (NAS) shows that over 90% of police and solicitors have no training to help them to understand autism.

A Secret Syndrome: Professors with a mild form of autism must decide whether to reveal their diagnosis
By Michelle Diament for the Chronicle of Higher Education. (Available online only to subscribers.)
"Academe is generally considered a more welcoming environment than most for people with autism. They get paid to talk at length about their area of interest in a realm where eccentricity and limited social skills are often seen as signs of genius rather than cause for scorn. [Yet] other professors who have autism choose not to tell their colleagues. They say that too few people, even among faculty members, understand the diagnosis and that if they reveal it they will be pitied or perceived as less capable."

Homo Sapiens/ Young writer with autism 'speaks' poetically
Story of a Japanese boy of 13 with autistic tendencies, who has published four books.


Adolescence, Without a Roadmap
Claire Scovell LaZebnik of Los Angeles, author of "Overcoming Autism," write for the New York Times of her teenage autistic son's awareness of sexuality and coming of age.


Progress made on All-Ireland autism centre

Likely to begin to offer services to children and young people with autistic spectrum disorders from Northern Ireland and the Republic from the autumn of 2006. The four key services due to be offered are a learning support service, an educational assessment service, a training and advisory service and an autism research and information service.


NEW JOB PROSPECTS FOR PEOPLE WITH AUTISM
A new scheme to help people with developmental disabilities find jobs was rolled out today following research showing only a small number are in full-time work.

Prospects London, part of the National Autistic Society's (NAS) employment consultancy, has unveiled Transitions, an initiative to get recent graduates and final-year students with Asperger syndrome, a form of autism, into work. An estimated 211,700 people in the UK have Asperger syndrome, but just 12% of adults are in full-time employment, despite often having above-average levels of intelligence.


Work & Family: Employers aiding parents of disabled children

By Sue Shellenbarger, The Wall Street Journal
"A code of silence has long kept parents of children with disabilities, from autism and Down syndrome to cerebral palsy and depression, from talking about their kids at work. Now, driven by growth in their numbers and in the cost of raising special-needs children, some of these parents are starting to "come out" at work. And a handful of employers are stepping up to help, with support groups, informational meetings and insurance benefits."


Stopping epileptic seizures using omega-3, vitamin E, diet, and more
By Roman Bystrianyk in Health Sentinel, October 20, 2005


Leaving autism in his wake
The story of swim champion Kim Jin-ho, who has autism and for whom swimming is more than just exercise ― it's a path to a more normal life, and it's making waves with disabled people across South Korea.

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SPECIAL ANNOUNCEMENTS

Creative Supports for Vulnerable Citizens
Audio and video recordings of the Guelph Spring Conference in April 2005 have been edited into:
-summary videotape of the essence and highlights of the conference

-a print publication of edited text transcripts of the presentations and of the displays

More than 180 people joined in the full program that opened with a keynote address by John Lord on “Creative Supports that Work: Values, Principles and Processes.”
Then there were four parallel workshops:

Judith Snow on “Building Supports with Individuals”
Barbara Leavitt on “From Housing to Creating My Home”
Peggy Hutchison on “Building Meaningful Supports for Work and Recreation Experiences”
Marlyn Shervill, Alice Quinlan and Michelle Friesen on “How Families and Communities
Can Make Creative Options Work: The Windsor-Essex Experience”
Throughout the day there were many displays by organizations from all over southern Ontario. Several creative initiatives were featured in the early afternoon session. John Lord gathered up the day’s ideas and strategies in a final plenary session, so that we could all “go home with awareness.”

We believe it is vital to build on what was learned at the Guelph conference. Many people noted that the scope of the conference was exactly what they needed. There was a heavy demand for places at the conference. Many were interested in more than one workshop topic, and wished there could have been time to take part in two or more instead of just one. We've heard from people all over Ontario who were unable to attend on April 29, but want to be kept informed of resources coming out of the conference.

The videotape and book have been produced by Guelph Services for the Autistic, which thanks Kerry's Place Autism Services and the Community Mental Health Clinic in Guelph for grants to help us make these resources available at modest cost.
Click for more details and order form

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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

Please Note:
Geneva Centre for Autism Toronto Calendar of Training Events
Click on title for Fall and Winter 2005-2006.
Click to register online
For questions, contact Event Coordinator Claire Shave at Ext. 235
Tel: (416) 322-7877
Toll Free: 1-866-Geneva-9
Fax: (416) 322-5894 or cshave@autism.net


November 19, 2005, 9am-4:30pm, in Elmira
Workshop entitled Exploring the Possibilities: Home, Work and Community
hosted by Elmira and District Association for Community Living.
Featuring four speakers, all of them adults with developmental disabilities, who have been able to create a life of their own. The presentation is designed to provide detailed information to families about creating personalized supports and good lives. These individuals will be accompanied by their families.
Click for more 

The event is free and lunch is provided. You must register to attend:
Laurie Thomson, Human Resources Administrator
Elmira and District Association for Community Living
(519) 669-3205 ext. 7 Fax: (519) 669-3444 Email: lthomson@elmiraacl.com


November 22, 2005, from 7:30pm,
in St Catharines

Niagara Chapter of Autism Society Ontario announces
Dr Dorothy Griffith on understanding sexuality and autism
The Regional Municipality of Niagara Headquarters (diagonal to Brock U)
Dr Griffith is a professor at Brock University and is the author of many books, chapters and papers on the topic of sexuality and disability. She has presented extensively across North America.
Abstract of her presentation:

Persons with autism and Asperger syndrome are at increased risk to develop a typically isolated approach to their sexuality, although some are also at increased risk to develop atypical paths that may result in some sexual challenges. In this talk, the educational components of sociosexual training, relationship training, responsibility training and parenting training will be discussed as tools to assist the person with ASD to develop a sexually integrated identity.
No cost; all are welcome. Contact: autismsocietyniagara@on.aibn.com or phone # 905-682-2776



November 24, 2005, 7-9:00 pm
"Where are They Now: Adult Functioning in Autism Spectrum Disorder"
CPRI, Crombie III Conference Room, 600 Sanatorium Rd., London, Ontario
Presenter:  Dr. Deborah Ellison
Presentation is appropriate for:  Caregivers and Educators
At the end of this presentation, audience members will be able to:
     -Demonstrate  knowledge about social functioning in adults with Autism Spectrum Disorders
     -Identify issues facing families of adult children with Autism Spectrum Disorders
     -Identify effective treatment modalities as described by parents.
Register by calling Rachel Pender at (519) 858-2774, x2627 by Friday, November 18, 2005
November 24, 2005, 5-9pm, in Toronto


Sunday, November 27th 2005, 11:30am to 2pm, in Toronto
NAAR Canada launches its "Lunch and Learn" series with Dr Susan E. Bryson

The series showcases the research of top scientists funded by NAAR.
Dr Bryson is Professor and Chair in Autism Research, Autism Research Centre, IWK Health Centre/Dalhousie University. She was formerly at the York University and the University of Guelph, and served on the Boards of Directors of Autism Society Ontario and Waterloo-Wellington Autism Services. She wrote the landmark report on the needs of adults with autism: Our Most Vulnerable Citizens (click on title to read).  
The Lunch & Learn will take place at 89 Chestnut/University of
Toronto Residence.
Tickets (nominal charge of $10.00 per person) must be purchased in advance to cater for lunch.
Click to buy tickets



November 24, 2005, 5-9pm, in Toronto
Kitchen Table Talks about Special Services at Home (SSAHPC)
SSAHPC hosts an evening of dinner and discussion about Special Services at Home
Location: North Toronto Memorial Community Centre: 200 Eglinton Avenue West (west of Yonge), Toronto
To register or for additional information
Visit the SSAHPC website


December 7, 2005, 5-9pm, in London
Kitchen Table Talks about Special Services at Home (SSAHPC)
SSAHPC hosts an evening of dinner and discussion about Special Services at Home
Location: Siskinds Office, 680 Waterloo Street, London
To register or for additional information
Visit the SSAHPC website

 
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ISSUES AND INITIATIVES

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

In the Name of Treatment
A Parent's Guide to Protecting Your Child From the Use of Restraint, Aversive Interventions, and Seclusion

A report with photos that are harrowing to see--but it's an important issue.


Dis-IT: Study of accessibility of elearning in colleges & universities

The eLearning research team of the Disability and Information Technologies (Dis-IT) Research Alliance is seeking research participants to complete an online survey about the the accessibility of eLearning to Canadian college and university students with disabilities. The researchers are interested in hearing from:

1. college and university students with disabilities who have taken courses using some form of eLearning

2. staff who provide disability-related services at Canadian postsecondary institutions

3. professors who have had students with disabilities in courses using eLearning

4. individuals who support/implement eLearning at Canadian universities and colleges

Gary Annable | Community Co-Director
Dis-IT: Disability and Information Technologies Research Alliance
Tel. (204) 947-0303 ext. 230
Website: http://www.dis-it.ca

For more information or to participate in this study send an email to

eLearning@Adaptech.org and indicate whether you are a student with a

disability, an individual who provides disability-related services, a

professor, or an individual who supports/implements eLearning on campus.

 

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BOOKS, WEBSITES AND OTHER RESOURCES


Carly Hatton of Guelph is an artist (who also has autism).
Gallery 404
(404 York Road in Guelph) has a permanent exhibit of Carly's art.

Visit Carly's website

When autism isn’t a disability
About Marc Fleisher, who suffers with autism and has written a book about how he lives with the condition and gives advice to others. The book is Survival Strategies for People on the Autism Spectrum, by Marc Fleisher, £12.99, pub. Jessica Kingley, ISDN 1843102617

Autism Spectrum Quarterly
described itself as "THE MAGAJOURNAL™" to underscore that it combines the readability and interest of a high-level magazine with the substance and depth of a professional journal.


This holiday season
COMMON
SENSES
has two retail locations available
December 3rd , 2005
Kerry's Place Autism Services
153 Queen St. W.
Brampton, ON
10am-4pm  &
December 10th, 2005
Kerry's Place Autism Services
1834 Lakeshore Road West, Unit #7,
Mississauga, ON
10am-4pm
We accept Cash, Debit, Visa, Mastercard
To avoid disappointment on larger “must have” items please order in dvance.
WWW.COMMONSENSES.CA  905-951-2804
Thank you to Kerry’s Place for allowing us to use their space


Stocking Stuffers for the child on the Autism Spectrum

Lots of new products to stimulate and calm the senses.

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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.

If you wish, we will not print 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


Brian Henson, who wrote the following essay, welcomes comments from others.


A Puzzle Within a Puzzle

 
Many times, today, we see the piece of the jigsaw puzzle with the image of the child, denoting the mystery of those on the autistic spectrum. This mystery is there, indeed, but the person, per se, is not the puzzle; it is just that "aura" (if I could use a term) that follows the person wherever... but the person is not able to hide from this "aura", but finds this "aura" often very difficult but intriguing, at the same time.
 
Within this puzzle, as if you took the large jigsaw piece, and broke it down into a separate puzzle in itself, is the mystery of why anyone finds something "objectionable". Where is the basis, I ask, for this? If I don't like a sport, such as soccer, why would anyone, anywhere, find my dislike for this sport objectionable? If I prefer to eat with my hands, as opposed to cutlery, again I find it hard to accept those who just claim that it is "common sense" to use cutlery (when, often, those same people will pick up certain foods, such as bananas with their hands). These are just two examples of this overwhelming issue of what others find "out of sorts" with statements, actions, or public appearance that they object to.
 
Twice, on Internet email groups, a few years ago and recently, I read a "rule" that the moderator of the group, at that time, had just put forward.
 
In the events that unfolded a few years ago, I found that someone had just gone against the "rules" of the group, and I sent a private email to the moderator, to explain the problem. The moderator became infuriated with my message, posted it to the other members of the group, and claimed that I was trying to take control of the group away from her. She immediately banned me from that group.
 
In the most recent example of this type of "objectionable" reaction, a group moderator was discussing polls and asked the members if they had any suggestions for a poll for the group. If so, he continued, they should forward the suggested topic for a poll to him by private email. Just after that, another member posted an open message suggesting a topic for a poll. I wrote back to the group, with a quote from the moderator about his request that any suggestion for a poll be sent to him by private email. The next day, the moderator came back and accused me of "flaming" him, by the "tone" of my message, stating that this tone was "satirical" and claiming that I was accusing him of "bad" administration in the handling of this group. I was in shock for quite some time as to how anyone could take an expression of respect for a "rule" and turn it into an accusation of assault and harassment.
 
What makes people try, in any way, to "read between the lines"? Is it education, itself, that teaches children and adolescents that they should, under no circumstances, take a passage "literally"? Is it the religious leaders, in referring to an article of faith, that tell their followers to "interpret" the wording of the article in a certain way? Is it the need for humour, itself, that tempts people to twist the meaning of words to create illusions, and therefore, laughs? Whatever the source or sources of this practice, it does create many problems for persons on the autistic spectrum who, like myself, see things more (but not always) in a literal setting--word for word, as it is written.
 
I hasten to add that we do not always see things "literally", as in the personal experience that I had with an English teacher who had the class study a poem of William Wordsworth. In that poem, one line read: "O, listen, for the vale profound is overflowing with the sound.."
 
The teacher asked us to give a written explanation of what the words "vale" and "profound" meant in the poem. Personally, I felt that Wordsworth was referring to the "voice" of the person he was listening to, and to the depth of that voice.
 
However, upon receiving the results of the assignment from the teacher, I read that I should have known that "vale" meant "valley" and that "profound" meant "deep". The teacher left a note for me to look up these words in a dictionary. That, as I saw it, was taking Wordsworth's writing very literally, whereas, I was taking his writing more metaphorically.
 
It's not just the statements that seem to be taken "out of context", by people reading between the lines, but also words, themselves.
 
One time, at a brunch with a few other persons on the autistic spectrum, the discussion seemed to be about certain soap operas, and how a brother and sister were relating to each other.
 
I wanted to get in to the conversation, so I said, "I wish that they would be more open with the issues surrounding incest."
 
At that moment, one of the autistics present, a graduate student at a local university, slumped over with her head just about hitting her plate.
 
The hostess, who knew her background, asked me why I had brought up the subject of child abuse, but I quickly denied having brought up that subject, at all. The hostess went on to say that this autistic student had been sexually abused by her father from early years, and the sheer mention of the word "incest" had triggered her horrid memories of those years.
 
The student got up from her chair and went to another room to lie down. After about an hour she came back, and was full of vengeance, telling me that I had to "think before you utter a sound, ever again!"
 
I was just as adamant, myself, at that time, in my defense, as I had no idea, whatsoever, that one word, out of tens of thousands of words, could trigger such a shocking reaction from someone else.
 
These experiences have left a lasting impression on me. That impression is one of fear.
 
I fear even expressing myself in front of others lest they take one word that I have spoken and take is as a "terrorist attack" against their frail egosystem.
 
I fear expressing myself to those in any form of authority who might construe my support of their authority as a veiled threat against their control of any circumstance or situation.
 
I fear expressing anything literally, lest others take it as being too blunt and not refined enough for the occasion.
 
I  fear expressing myself with any analogy or metaphor, lest others take those statements (coming from a autistic spectrum person) as literal statements.
 
These fears are what keep my desire for social contact to a minimum. The human need for social contact is still there, but, out of these fears,  it must be reduced as much as possible. In other words, the risk (of having others find anything that I express as objectionable) outweighs any benefits that might be gained by social contact.
 
The ratio is not absolute (in the sense of one hundred percent risk to zero percent social benefit), but more relative (in the sense of about seventy percent risk to thirty percent social benefit).
 
However, as long as the risk is greater than the benefit, when a chance to get involved socially, with others, presents itself, I am extremely leery and cannot "push" myself to "take the plunge", lest the risks rear themselves, as they have done in the foregoing examples.
 
That, in the essence of social isolation, is one of the "boulders" to social integration for persons on the autistic spectrum.
 
It is easy for anyone else to dismiss these fears by such statements as "water off a duck's back". These fears are so deep, sometimes, that they could be called phobias, but that is not the same as a social phobia, as it is not the fear of people, but the fear of  their reactions, in finding a person's behaviour, words, or statements as objectionable. If people who felt this way could only see their reactions as they are--coming from themselves, the reverse would not be true, but there would be more balance in human interactions. To expect this of others, though, is, I will admit, asking too much, as they have just as much of a foundation in the basis for their reaction as an autistic person has in his foundation for fearing such a reaction.
 
This is not to say that it is simply a matter of autistics versus neuro-typical persons, at all, as autistics fear just as much of a reaction from other persons on the spectrum, as well (as shown in the one example above, about the university student). It's never a matter of "we" versus "them", but a fear of expressing oneself in the face of possible adversity.
 
-Brian Henson©2005




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