ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
  15 December 2008




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GOOD NEWS IN ONTARIO

The Ontario government has announced that it will change the Ontario Disability Support Program to ensure that both Registered Disability Savings Plan (RDSP) assets and withdrawals are fully exempt!

Read the Government press release

Bulletin from PLAN, which spearheaded this form of savings for families with a son or daughter with a disability:
December 1, the RDSP Becomes Official!

The Registered Disability Savings Plan is now an official Canadian Registered Plan and can be issued by financial institutions across Canada. The RDSP promises to be a life-changing future planning tool for hundreds of thousands of Canadians with a disability, and we are excited that this has become a reality. We see the RDSP as an opportunity for families and individuals across Canada to greatly increase their future financial security and quality of life.
PLAN is also excited to announce the launch of our new website www.rdsp.com. This website is the go-to website for any information relating to the RDSP, including financial updates, provincial treatments, details and analysis, stories...

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AUTISM NEWS, MAINLY ABOUT ADULT ISSUES

Landmark Study: Autism Recognized  As Medically Treatable
In April 2008, the American College of Medical Genetics (ACMG), an AMA-recognized board, issued clinical practice guidelines that clinical geneticists should follow in determining the etiology for those with an autistic spectrum disorder (ASD) diagnosis and in treating patients with this diagnosis. This study, “Autism spectrum disorder-associated biomarkers for case evaluation and management by clinical geneticists” in Expert Review of Molecular Diagnostics,1 confirms that there are now well- established, routine, clinically available, identified biomarkers to help clinical geneticists medically evaluate and treat individuals diagnosed with an ASD and briefly outlines some recognized biomarkers.

Link to this article


Researchers say they've discovered clue to roots of epilepsy, autism

Rice University researchers believe they have found a potential clue to the roots of epilepsy, autism, schizophrenia and other neurological disorders. And they have to share credit with the tiny fruit fly. Doctoral student Eric Howlett was studying the peripheral nerves of the Drosophila, aka the fruit fly, when he made an unexpected discovery. Howlett found a connection between glutamate -- an amino acid and neurotransmitter in much of the food we eat -- and an enzyme called P13K that, Howlett found, regulates the activity of neurons......

Howlett said mGluRs had already been targeted in possible treatments for schizophrenia, epilepsy and other “excitability” diseases, so it’s not a stretch to think his research could lead to even more strategies in treating neurological ailments. “Actually, all of the molecules involved in our model have been implicated in one way or another with neurological diseases, but no one has been able to link them together into a coherent explanation of the diseases,” he said. “Our model provides a novel framework that could really go a long way toward doing that.”  Link to the paper

 
Majority of UK local authorities failing adults with autism

For the first time, all local authorities in England have been rated and ranked on their approach to adults with autism. The online table, published by The National Autistic Society (NAS), reveals an astounding postcode lottery where only one local authority has a system to find out how many adults with autism are in their area.

Urgent action has been called for by the NAS, which found that 148 out of the 149 local authorities surveyed had no means of assessing how many people in their jurisdiction suffered from the condition and only 27 per cent said they were planning to address this issue. Meanwhile, 64 per cent had failed to follow Department of Health recommendations to set up a specific team or post to take responsibility for autism. The NAS said: "All schools have to record the number of children with autism and we want to see local authorities pass that information onto adult services, so support can be planned for those children in adulthood. "Earlier this month, the NAS called on government to factor the needs of 300,000 working-age autism sufferers into new welfare legislation.


Ambitious plan would create site for adults with autism at Dubuque property

A good story from Iowa, about plans for Red Oak Farm, modeled on Bittersweet Farms in NW Ohio, and The Homestead, near Des Moines.


Unique Challenges Face Adults With Autism And Their Parents
Includes a good story of the "Ausome Social Group for Teens and Young People" started in 1997 in Madison, Wisconsin, with just four teens, including Matt, with autism. It has since grown to nearly 150 members with ages ranging from 12 to 30.The group meets the first Saturday of every month, and parents say it's one of the few places they feel at home.

Researchers say brain waves are window into autism language woes

"Unique brain wave patterns, spotted for the first time in autistic children, may help explain why they have so much trouble communicating. Using an imaging helmet that resembles a big salon hair dryer, researchers discovered what they believe are "signatures of autism" that show a delay in processing individual sounds. That delay is only a fraction of a second, but when it's for every sound, the lag time can cascade into a major obstacle in speaking and understanding people, the researchers said. Imagine if it took a tiny bit longer than normal to understand each syllable. By the end of a whole sentence, you'd be pretty confused."

Adult brain neurons can remodel connections
Overturning a century of prevailing thought, scientists are finding that neurons in the adult brain can remodel their connections. In work reported in the Nov. 24 online edition of the Proceedings of the National Academy of Sciences (PNAS), Elly Nedivi, associate professor of neurobiology at the Picower Institute for Learning and Memory, and colleagues found that a type of neuron implicated in autism spectrum disorders remodels itself in a strip of brain tissue only as thick as four sheets of tissue paper at the upper border of cortical layer 2.
"This work is particularly exciting because it sheds new light on the potential flexibility of cerebral cortex circuitry and architecture in higher-level brain regions that contribute to perception and cognition," said Nedivi, who is also affiliated with MIT's departments of brain and cognitive sciences and biology. "Our goal is to extract clues regarding the contribution of structural remodeling to long-term adult brain plasticity -- the brain's ability to change in response to input from the environment -- and what allows or limits this plasticity."

Two articles suggesting "disturbance of mitochondrial energy production as an underlying pathophysiological mechanism in a subset of individuals with autism."
Mitochondrial Disease in Autism Spectrum Disorder Patients: A Cohort Analysis

Hannah Poling Autism-Vaccine Case: Mitochondrial Dysfunction for ME/CFS-Labelled Patients

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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

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advance announcement...
.

26-28 February 2009, in Herning, Denmark
Meeting of Minds 3, 2007.  a Conference on Autism:

 a multidimensional approach - research and practice

For researchers, parents, professionals, people with autism, and others with an interest in autism and related disorders. Meeting of Minds is a concept which brings different mindsets together. The 2009 conference centres on issues in areas such as the medical, the educational/psychological and quality of life

This conference will build on the phenomenal success of the 2007 International Conference "Meeting of Minds 2" that brought together professionals, families, carers and people with ASD from all over the world. The first Meeting of Minds conference on autism and related disorders was held in 2003 in Copenhagen. The organizers’ vision for the conferences is to impart research based knowledge and establish an atmosphere for the exchange of knowledge between researchers and professionals in the field of autism and related disorders.

Plenary sessions will be presented by the following keynote speakers:  

·        Lorna Wing, Dr., NAS Lorna Wing Centre for Autism

·        Judith Gould, Director, NAS Lorna Wing Centre for Autism

·        Elkhonon Goldberg, Professor, New York University School of Medicine  

·        Christopher Gillberg, Professor,  University of Gothenburg  

·        Gary Mesibov, Professor, University of North Carolina (to be confirmed) 

·        Rita Jordan, Professor, University of Birmingham  

·        Mohammad Ghaziuddin, Associate Professor, University of Michigan  

·        Per Hove Thomsen, Professor, University of Århus

·        Maria Råstam, Associate Professor, University of Gothenburg

·        Richard Mills, Research Director, Research Autism/National Autistic Society

·        Olga Bogdashina, Visiting lecturer, University of Birmingham

·        Eva Billstedt, Dr., University of Gothenburg

·        Holger Kallehauge, Retired High Court Judge, Disabled Peoples Organisations

·        Kjeld Høgsbro, Professor, University of Aalborg

 

Further details on the conference, including the full programme can be accessed via the website www.meetingofminds.dk where online booking is now available.



February 26-March 1, 2009, in Vancouver
Biennial Autism Congress: Autism Through the Lifespan
featuring over 18 of the world's foremost autism experts speaking on a full range of topics
Link for more details: http://www.autismvancouver.com
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RESOURCES

Autistic Son Reveals Family Shame and Strength
Movie review of "The Black Balloon" by Stephen Holden in The New York Times.
Would you be able to cope? That is the unspoken challenge laid down by “The Black Balloon,” a harrowing, unsentimental portrait of a middle-class Australian family whose oldest son has severe autism compounded by attention deficit hyperactivity disorder. Would you find in yourself the seemingly infinite reserves of love and patience possessed by the Mollisons, the movie’s itinerant, highly stressed army family who have just moved to the suburbs of Sydney? Maybe not. "The Black Balloon,” directed by Elissa Down, was inspired by her experiences growing up in a household with two autistic brothers.....


featuring....
Girls Growing Up on the Autism Spectrum:
What Parents and Professionals Should Know About the Pre-Teen and Teenage Years
by Shana Nichols with Gina Marie Moravcik and Samara Pulver Tetenbaum.
Growing up isn't easy, and the trials and tribulations of being a teenager can be particularly confusing for girls with Autism Spectrum Disorders (ASDs). This book covers all the concerns commonly faced by girls with ASDs and their parents, from periods and puberty to worries over friendships and "fitting in".
Shana Nichols is a Canadian-born psychologist and the cover illustration by Canadian teen with autism
Paperback, ISBN: 978-1-84310-855-9, 234mm x 156mm / 9.25in x 6in, 256pp, November 2008, £13.99, $19.95

"Grappling with the Enigma of Girls on the Autism Spectrum ....
New Book Weaves Rich Fabric of Stories about Hope, Difficulty, Determination"
 
New research has demonstrated that girls with mild autism are less likely to be identified and diagnosed than boys. According to a recent article in MedicalNewsToday.com, researchers found that high-functioning girls with autistic spectrum disorders (ASDs) showed significantly fewer stereotyped and repetitive behaviors than the boys and were more likely to have obsessional interests centered on people and relationships. 
 
Shana Nichols, along with Gina Marie Moravcik and Samara Pulver Tetenbaum, have addressed this under-served and under-represented population in their new book Girls Growing Up on the Autism Spectrum [2008, Jessica Kingsley Publishers, 352 pages, paperback, 978-1-84310-855-9, $19.95], which covers concerns faced by girls with ASDs and their parents, from periods and puberty to worries over friendships and 'fitting in,' giving candid and realistic advice on a wide range of important teenage topics. 
 
"Ten years ago this book was but a glimmer, a whisper of an idea inspired by a young girl with golden hair and a name to match the spark inside of her," writes Nichols in the introduction. "Since then, it has slowly been brought to life by the incredible families I have worked with and spoken to; the girls, the women, young and wise, who live graciously and courageously with ASDs. I have learned immeasurably both from those who embrace who they are, and from those who struggle to make sense of the world and their place in it. Women have a history of sisterhood—of weaving a rich fabric of stories of hope, difficulty and determination—and passing down their knowledge to others." 
 
"This may not be a comfortable read for some of you," writes Liane Holliday Willey, EdD, in the book's foreword. "Puberty, sexuality, personal hygiene and all the other adolescent and teen issues go hand-in-hand with awkward discussions and debate, but without frank discussion we do our young women on the spectrum a great disservice. This book hits the real issues head on. There is no ducking out of the way to avoid controversy or discomfort." 
 
Perhaps, most importantly, this book focuses on issues that are specific to females in the ASD community, an area which is underrepresented due to the belief that most individuals with ASDs are male. Nichols, however, believes that females are less likely to be diagnosed because the symptoms of ASDs may manifest differently in females than they do in males. Accordingly, with a new interest in the study of females with ASDs, girls who previously had been flying under the radar have now surfaced, resulting in issues with puberty, sexuality and hygiene—issues which Nichols seeks to address. 
 
"Throughout the last ten years, we have been inspired by the families and daughters with whom we have worked, and who continue to challenge us by asking the questions that do not yet have answers: difficult questions that deal with safety, independence, mental health, happiness, self-esteem, friendships, relationships and the future ahead," write the authors in the conclusion. "We encourage everyone to keep asking. Without these questions, there can be no answers."
  
Shana Nichols, PhD, is Clinical Director of the Fay J. Lindner Center for Autism and Developmental Disorders affiliated with AHRC Nassau, and the North Shore - LIJ Health System on Long Island, New York. Gina Marie Moravcik, MA, CCC-SLP, is Coordinator of Education and Speech Language Services at the Fay J. Lindner Center for Autism and Developmental Disorders. She is a speech and language pathologist specializing in social communication and autism spectrum disorders. Samara Pulver Tetenbaum, MA, has been working in the field of autism and related developmental disabilities for the past five years and is currently employed as an applied behavior specialist at the Fay J. Lindner Center for Autism and Developmental Disorders.
  
For further information or for a review copy, please contact:
Teresa Finnegan, Jessica Kingsley Publishers

400 Market Street, Suite 400, Philadelphia, PA 19106, USA
Tel: (215) 922-1161; Fax: (215) 922-1474; email:
teresa.finnegan@jkp.com

To purchase this book, please visit: http://www.jkp.com/catalogue/book.php/isbn/9781843108559


Autism Myths: How Things Got So Bad
Described as "a very simple website. It discusses in detail the myths that have come to be associated with the causes and treatment of autism. The site is run and owned by Kevin Leitch, father to a severely autistic child living in the UK.Includes:

Understanding Autism through Rapid Prompting Method by Soma Mukhopadhyay, 296 pages, Publisher: Outskirts Press (October 20, 2008), ISBN-10: 1432729284,ISBN-13: 978-1432729288
Read more about the book
Visit Soma's HALO website


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Send news, announcements and comments to ebloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

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 announcements 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 if you have an online version to which you can provide a link.

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