Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG

Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 

The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 

Statements below from the AAP.

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

DSM5 ASD Criterion D: No Clinically Signifcant Impairment in Current Functioning = No Autism

The DSM5 is certainly open to criticism; particularly in its combining of the pervasive developmental disorders into one Autism Spectrum Disorder ignoring the very large numbers of persons with DSM-IV Autistic Disorder who also suffer from Intellectual Disability.  One point which did make sense in the Autism Spectrum Disorder diagnostic criteria though is the one that is routinely ignored by those who glorify autism disorders ... Criterion D (underlining added):

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

D.Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The subscribers to the irrational view that autism disorder, a mental health disorder diagnosis, is not really a disorder after all are able to maintain their beliefs by ignoring reality particularly the realities faced by those with severe autism disorders.  They routinely claim every historical genius or artistic talent as an "autistic".  They argue for the purity of the autism spectrumm "condition" by pretending there intellectual disability is just a coincidence and has nothing to do with autism.  In that regard of course they are on the same page as the professionals who separate ID and ASD and call them comorbid conditions.  They fall off that page though and put distance between themselves and the autism health care professionals by ignoring the plain wording of the DSM5 ASD Criterion D.  

Unfortunately a Jerry Seinfeld has only to speak and his words are heard and debated around the world. JS "migh be autistic" and that is good enough for those who want to put distance between themselves, or their family members, and the intellectually disabled and impaired in their everyday life activities at the severe end of the spectrum were autism is exactly what it has always been ...  a disorder.

Very high functioning persons claiming to be autistic must be able to demonstrate, as stated in DSM5 299.00 Autism Spectrum Disorder  that the DSM5  autism symptoms cause  .... . clinically significant impairment in current functioning.  Otherwise they should not receive an ASD Autism Spectrum Disorder diagnosis and should not claim to be autistic. 

The Seinfeld-Descartes Autism Diagnostic Tool: "I think I am Autistic therefore I am Autistic"

The Seinfeld-Descartes Autism Diagnostic Tool: I Think I Am Autistic Therefore I Am Autistic

Many, especially many with very, very high functioning autism diagnoses have embraced Jerry Seinfeld's new test for autism "conditions" one that the great comic borrowed from philosopher Rene Descartes:  "I think I am autistic, therefore I am autistic".

With the Seinfeld-Descartes diagnostic tool it is no longer necessary for those who want to join the truly amazing autism club to obtain one of those pesky medical diagnoses.  Nor will it be necessary to demonstrate the presence of that nasty Criterion D in the DSM5 Autism Spectrum Disorder:

D. Symptoms together limit and impair everyday functioning. 

I am not aware of what limits or impairments that the extremely rich successful comic and family man Jerry Seinfeld has in everyday functioning. For that matter it is not clear what impaired everyday functioning has ever been exhibited by many claiming to be autistic, including former free ranging Aspergians but it doesn't matter in today's world.  Jerry Seinfeld's speculation about being autistic is enough for him to receive a warm embrace from the very high functioning autism self advocacy world and the mainstream media.

Seinfeld-Descartes Autism Diagnostic Tool - I think I am autistic therefore I am autistic.  JE Robison and Ari Ne'eman couldn't have asked for a better Christmas present.

The Damaging Impact Of Seizures On Individuals With Autism

Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.

The Damaging Impact Of Seizures On Individuals With Autism

Newark Valley, NY, February 15, 2013 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD).

Silently Seizing:  Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools.

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting.

As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis.

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit: www.bit.ly/Rb2WBW.

Caren Haines is also co-author of Georgia, The Flying Dog, a children’s book that explores the concept of unconditional love and acceptance of our differences.

###

Established in 1999, the mission of AAPC Publishing is to be the first source for practical solutions related to autism spectrum and related disorders. AAPC Publishing is an independent publisher, targeting professionals and parents alike. AAPC Publishing strives to offer publications at affordable prices so that important resources are available to anyone with an interest in the autism spectrum.

MEDIA APPEARANCE:

Caren Haines, AAS Nursing, R.N. - Presentation and Book Signing Event at the 2013 Southeastern “Across the Spectrum” Conference - Autism/Asperger Conference and Expo

When:  February 28th, 2013 - Ms. Haines' presentation is from 11:00 am – 12:15 pm; immediately following she will be at the AAPC booth signing books.

Where: Gwinnett Convention Center - www.gwinnettcenter.com
               6400 Sugarloaf Parkway

               Duluth, Georgia   30097

ADDITIONAL INFORMATION: Hosted by: Georgia Autism Conferences and Exceptional Ed Events.  Georgia Autism Conferences strives to meet the needs of the Georgia Autism community by providing quality seminars and conferences throughout the state on topics related to Autism Spectrum Disorders.

Autism in a Lab Dish? Call Me Unconvinced

The hot autism news of the day is that scientists have replicated autism spectrum disorder in a lab dish. A study published in Cell asserts that the authors have used stem cells to develpop  neurons.  I am not convinced. 

Maybe someday when we know what autism actually is we can replicate it but today when we can not yet agree on whether autism includes those with no obvious life functional limitations and when very serious challenges facing the 75-80% of persons with Autistic Disorder who also have significant intellectual disabilities are dismissed as resulting from co-morbidities I don't understand how anyone can claim to have replicated autism spectrum disorder in a petri dish.

Interestingly the Cell study Abstract indicates that Rett syndrom was used as an autism spectrum genetic model:

Autism spectrum disorders (ASD) are complex neurodevelopmental diseases in which different combinations of genetic mutations may contribute to the phenotype. Using Rett syndrome (RTT) as an ASD genetic model, we developed a culture system using induced pluripotent stem cells (iPSCs) from RTT patients' fibroblasts. RTT patients' iPSCs are able to undergo X-inactivation and generate functional neurons. Neurons derived from RTT-iPSCs had fewer synapses, reduced spine density, smaller soma size, altered calcium signaling and electrophysiological defects when compared to controls. Our data uncovered early alterations in developing human RTT neurons. Finally, we used RTT neurons to test the effects of drugs in rescuing synaptic defects. Our data provide evidence of an unexplored developmental window, before disease onset, in RTT syndrome where potential therapies could be successfully employed. Our model recapitulates early stages of a human neurodevelopmental disease and represents a promising cellular tool for drug screening, diagnosis and personalized treatment.

The DSM-5 working groups have recommended that Rett's Disorder not be included in the DSM-5. The rationale for excluding Rett's Disorder is based on it's very specific and known etiology and the brevity of the autism like symptoms of the condition:

Rett's Disorder patients often have autistic symptoms for only a brief period during early childhood, so inclusion in the autism spectrum is not appropriate for most individuals.

Like other disorders in the DSM, Autism Spectrum Disorder (ASD) is defined by specific sets of behaviors and not by etiology (at present) so inclusion of a specific etiologic entity, such as Rett's Disorder is inappropriate.

Given the DSM-5 position on excluding Rett's Disorder from the Autism Spectrum Disorder it is difficult for this humble dad to see how a genetic model based on Rett's can be said to result in a replication of ASD in a dish.

I absolutely support autism research,including stem cell research, but the claim itself blaring in news headlines that autism has been replicated in a petri dish is in need of a good scrubbing with some  soap and water.

Saskatchewan, Canada's Autism Wasteland, Is Exhibit 1 in the Case for a National Autism Strategy

More than three years after I described Saskatchewan as Canada's Autism Wasteland the label still accurately describes the state of autism services in the prairie province according to a FEAT opinion article in the Star-Phoenix. 

The Families for Effective Autism Treatment article argues that some money has been spent but it has been spent ineffectively and cautions anyone with an autistic child not to move to the "Land of the Living Skies" as Saskatchewan markets itself:

It sounds impressive when you hear about all the money being put into autism and programs the government is running, but ask families across Saskatchewan about how well this money is being spent. Ask our government for current and regular report cards. Ask what successes it has accomplished with these new programs and positions. Ask it to provide statistics on how many individuals receive adequate and professionally trained support.

Ultimately, individuals with autism continue to lose.

....
 

Our children do not have time to waste while valuable dollars are spent creating expensive, ineffective services that aren't based on evidence and research. Our children need the help of proven therapies before they become another sad statistic lost in Autism's Wasteland.

Let your voice be heard for those who cannot. Saskatchewan can't afford to keep spending millions of dollars for ineffective programs that do not help individuals with autism. Let's use the money wisely and try not to re-create the wheel.

SASKFEAT is demanding immediate individualized funding, which is not income tested, until an acceptable and proven autism strategy is in place in Saskatchewan -- a strategy that addresses the lifetime needs of all individuals with ASD, and that is delivered across this province. Our families have been waiting and suffering long enough.

3 years after Saskatchewan started to fund autism services they still do not have an effective autism strategy in place. It is the autistic children of Saskatchewan who lost their 3 years of development potential, particularly during their early years between 2 and 5, who will have lost the most and who will pay the price for government and bureaucratic nonchalance or incompetence. 

Saskatchewan, Canada's Autism Wasteland, is also Exhibit 1 in the case for a National Autism Strategy.

Medicare for Autism Now! campaign returns to Ontario

Medicare for Autism Now! campaign returns to Ontario

Jean Lewis, chief spokesperson for FEAT-BC’s Medicare for Autism Now! campaign today announced that she and others, including Stefan Marinoiu, of Toronto, will be traveling through Ontario, organizing parents and supporters as part of a national initiative to obtain Medicare coverage for autism treatment. They will be holding a news conference on Parliament Hill, in the Charles Lynch Press Theatre, at 11:00am on Monday, April 14^th.

The news conference will be followed by a three day campaign swing through federal Health Minister Tony Clement’s constituency of Parry Sound-Muskoka, various media interviews in Toronto, on Friday, April 18th, and a concluding parent/supporter rally at the Iroquois Recreation Centre, in Oakville, beginning at 2:00pm on Saturday, April 19th. Making your vote count in the next federal election will be the central message to be delivered by a variety of speakers.

FEAT-BC’s Medicare for Autism Now! campaign is building a coalition of parents, active supporters and other fair-minded Canadians across our country. “The epidemic of autism and the urgent need for effective and affordable treatment is a major issue in the US federal election campaign. We aim to make sure the same thing happens in Canada because our children deserve no less”, said Mrs. Lewis.

For further information, contact: Jean Lewis at 604-290-5737 or via e-mail: jean.lewis@telus.net.

autism

Medicare for Autism Now! Rally April 19th Oakville

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

Why should you attend?

* Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families from BC to Newfoundland and everywhere in between are still bankrupting themselves in order to provide treatment for their disabled children.

* The current and limited patchwork of funding and services provided through the provinces’ social services ministries could evaporate tomorrow with a change of government, or the stroke of a bureaucrat’s pen. No legislation or mandate exists within these social services ministries to deliver health care or to protect and enshrine our children’s medically necessary treatment.

* In 30 years of "advocacy", the only two initiatives which have achieved ANY success in obtaining treatment funding in any province has been litigation, and more recently, focused political action. Both were brought by volunteer parent groups.

* Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. Autism has become an election issue in the U.S. - Senators Clinton, Obama and McCain have all articulated extremely progressive positions. In 2006, the U.S. federal government unanimously passed the "Combating Autism Act" which allocated $945 million into research and treatment. The U.S. federal government recognizes their responsibility to intervene by acting to avoid a major health and social crisis.

* It is time for our federal government to recognize their responsibility to act! This is not a left or right issue – it’s a right or wrong issue!

* Today, all over Canada, parents of children with autism and growing numbers of fair-minded, but outraged Canadian voters expect our federal government to act. We are letting those who govern and those who wish to govern know they will be held accountable, regardless of party affiliation, at the ballot box in the next federal election.

Who should attend?

You – and every fair-minded Canadian you know!

In Canada, children with autism and their families suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sake, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, kids, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

Come and find out how you can make your vote actually count!

Featured speakers will include:

Jean Lewis – Vancouver parent, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Harold Doherty – Fredericton parent, Maritime Co-ordinator for "Medicare for Autism Now!" initiative

David Marley – Vancouver supporter/advisor, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Stefan Marinoiu – Toronto parent, "Medicare for Autism Now!" supporter

Deborah Coyne – Toronto parent, "Medicare for Autism Now!" supporter

Please RSVP a.s.a.p. to: Jennifer O’Brien

Email: jobrien116@cogeco.ca

For more information regarding "Medicare for Autism Now!" – check out:

www.medicareforautismnow.blogspot.com


autism

Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder

The major media is again featuring a high functioning person with Aspergers who claims that autistics don't want to be cured. In the Chicago Tribune.com Alex Plank offers the anti-cure ideology promoted by Jim Sinclair, Michelle Dawson and Amanda Baggs, all very high functioning persons with pervasive developmental disorders which are often casually referred to as autism spectrum disorders. Mr. Plank according to the article " has a girlfriend and is interested in computers, writing and acting." So why should Mr. Plank want to be cured? I am not sure how or why Mr. Plank, or family members, sought and obtained his pervasive developmental disorder diagnosis. Given his own self description it is hard to see why he was even diagnosed in the first place but he certainly is not qualified to make the statements about autistics not wanting to be cured.

Mr. Plank according to the Tribune article:

1. Is a college student and founder of a Web Community.
2. He has a girlfriend and is interested in computers, writing and acting.
3. Had friends and had no problem with eye contact or socialization.

Given the above description I can understand why Mr. Plank would not want to be cured although I am not sure what he could be cured of since it sounds like he is an ordinary functioning individual.

What Mr. Plank is not is a person with Autistic Disorder with profound developmental delays like my son. Unlike Mr. Plank my son does have problems with language and has cognitive challenges. He can not function in the world without 24/7 supervision. Occasionally he bites himself and he has put his hands through windows and smashed holes in walls. He does not understand all the dangers of everyday life like automobile traffic and he will not be able, like the fortune blessed Mr. Plank, to live an independent life with girlfriends, college and computers.

Mr. Plank though is offended that parents like me talk about the harsh realities faced by our severely autistic children because it makes him uncomfortable as an "autistic". He is also offended that parents seek treatment and cure for their own children which, given Mr. Plank's good fortune are almost assuredly more severely disabled than he. Mr. Plank, by his own self description, does not face the severe challenges that are faced by many autistic people with actual Autistic Disorder. He should be thankful for his blessings and quit posing as a spokesperson for all "autistics".

Mr. Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other very high functioning persons at the upper end of the "autism spectrum" should be thankful for their blessings and stop attacking parents trying to help their own children. No one wants to cure you Alex, stop trying to keep my son and other persons with Autistic Disorder down so that you can feel better about the "autistic" label you have embraced.

autism

Deborah Coyne - Time Overdue To Put Autism On The National Agenda

Deborah Coyne has joined the Medicare for Autism Now team and will be one of the speakers when the team visits Oakville, Ontario on April 19, 2008 as part of a national initiative that will include speakers from BC to Toronto to New Brunswick. (AutismRealityNB will also be there).

Deborah has spent her life engaged in public policy work. She is a lawyer, university professor, constitutional activist, public servant, writer, small businessperson and the mother of two children, one of whom is on the autism spectrum. She has often been at the centre of the great public debates of our times -she became a leading figure actively engaged in the constitutional debates that unfolded involving the Meech Lake Accord and the referendum on the Charlottetown Accord. She is currently a policy analyst with an international consulting practice.

Deborah has also started a blog site Canadians Without Borders On the future of our great country, the challenges we face and what lies beyond the horizon . Yesterday was World Autism Awareness Day and Deborah wasted no time weighing in on the subject of Canada's need for a national autism strategy in Time overdue to put autism on the national agenda Medicare for the twenty-first century. I encourage everyone to add Deborah's blog to their blogrolls or blog links. Deborah's blog will be a source of well informed, quality, legal and policy perspectives on a number of important issues including a National Autism Strategy to ensure the proper effective treatment and education of all autistic Canadians - wherever they live in Canada.

It is now beyond debate that the most effective type of autism treatment is Applied Behavioral Analysis (ABA) – something which involves intensive one-on-one assistance to parents and their ASD child at the earliest possible age. ABA is an enormously valuable and justifiable investment in a huge and growing number of young persons who have a great deal to contribute to society and who need not be a heavy burden on the health care system as they grow older.

Provinces do try to meet the needs of ASD children, but in a haphazard ad hoc way generally through social services mainly for respite and support, not medical treatment. And much depends on the uneven ability of parents to access the necessary funding and services available. Only Alberta has complied with a court order requiring the province to fully fund the appropriate medical treatment for autism - ABA intervention - through the health care system.

Effective autism treatment of course impacts both health care and education. We need not only the investment in people to provide the services through the health care system – ABA specialists, speech therapists, child psychologists etc – but also the investment in the people needed to provide the services in the education system, notably one-on-one teachers’ assistants.

autism

UN Secretary-General Ban Ki-moon World Autism Awareness Day Comments

United Nations Secretary-General Ban Ki-moon praised the courage of children with autism and their families on the historic first World Autism Awareness Day as reported on AP:

"Let us pay tribute to the courage of children with autism and their families, as they strive every day to confront the disability with a powerful combination of determination, creativity and hope. Let us empower them and respond to their needs today, so as to make our societies more accessible, enabling and empowering for all our children tomorrow."

autism

Run the Dream Celebrates World Autism Awareness Day

RUN THE DREAM LAUNCHES "THEIR STORIES" INITIATIVE

IN CELEBRATION OF UNITED NATIONS WORLD AUTISM AWARENESS DAY

Internet-enabled video interviews with parents, family members, caregivers, and persons with an Autism Spectrum Disorder will be recorded and made available for the public on the Run the Dream website.

April 2, 2008 is the first annual United Nations (UN) World Autism Awareness Day, fulfilling the UN resolution which encourages all member states to take measures to raise awareness about autism throughout society. In support of this resolution, Run the Dream is launching Their Stories, web-based video interviews with the persons most affected by an Autism Spectrum Disorder (ASD), who can best describe what it means.

Run the Dream invites parents, family members, caregivers, and persons with ASD to share their stories, via a video interview which can be recorded on the Run the Dream web site, http://www.runthedream.ca/stories.html#stories, starting immediately, and viewed on the same web site starting on April 2, World Autism Awareness Day. Stories will be recorded and shared with the public on the Run the Dream website until the run is completed at the end of November this year. Run the Dream will continue to share these stories by then compiling the videos from each province and presenting them to the respective Premier, and likewise will present all videos from across Canada to the Prime Minister. The Their Stories initiative is the very first of its kind in Canada using an automated web-based structured interview process, and based on our research, is a global first as well. This innovation is possible through the generous sponsorship of Minavox ( www.minavox.com) and the use of their ground-breaking Canadian-developed technology, Savisys.

In the few days since Jonathan Howard started his run, stories from across Canada have flooded Run the Dream's e-mail inboxes, "Jonathan Howard, created the concept of Run the Dream and started a cross-Canada run in support of ASD on March 25. Even though we're only in the beginning days of this journey we've already received touching stories and offers of support from a large number of Canadians who want to tell their story, and who want to help in making Run the Dream a success. In our view these stories are worthy of sharing with every Canadian. We're delighted that Minavox is making their software and service available to Run the Dream for this purpose," says Bill Robertson, Chairman of Run the Dream's organizing committee.

Working with Autism Society Canada (ASC) http://www.autismsocietycanada.ca/Run the Dream wants to ensure all voices are heard. Those people who do not have access to a computer or a webcam can share their stories using any PC with a webcam, including those of ASC's community partners, through the Their Storiesweb portal. "ASC represents a very large collective voice of the autism community in Canada; we applaud this opportunity to tell Their Stories", says Kathleen A. Provost, CFRE- Executive Director, Autism Society Canada.


This innovation is possible through the generous sponsorship of Minavox (www.miavox.com ) and the use of their ground-breaking Canadian-developed technology Savisys. "Minavox is proud to be associated with Run the Dream and Autism Society Canada, and to be able to provide its services to let Their Stories be heard." said Todd Nowensky, Managing Director and Vice-President of Business Development for Minavox Inc. Added Geoff Kushnir, Managing Director and Vice-President of Technology: "In our view this is one of the best illustrations of what is being described as the new era of the internet, Web 2.0."



Jonathan Howard, 24, McMaster University alumnus, and accomplished athlete developed the Run the Dream campaign to help raise awareness of the challenges faced by individuals with ASD and their families. Run the Dream is an eight month solo run across Canada, starting in St. John's, NL on March 25 and finishing in Victoria, BC on or about November 21. The run will cover approximately 9000km, crossing 10 provinces and more than 650 communities across the country. The campaign is targeted to raise $2.5 million to benefit children affected by ASD and their families. Jonathan appreciates the groundswell of support that has already formed behind his effort and would particularly like to acknowledge the contributions of the sponsors (listed below) of Run the Dream.


# # #


For more information on Run the Dream or to schedule an interview

with Jonathan Howard please contact

Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4.

For more information on Autism Society Canada please contact:

Lynn Andrews, Director of Communications:

lynn@autismsocietycanada.ca

For more information on Minavox please contact:

Ada Nowensky, VP of Marketing
anowensky@minavox.com


Run the Dream would like to thank their sponsors:

Telus – Official telecommunications sponsor for Run the Dream

Gatorade

Landmark Sport Group

Mariposa Cruises

Minavox

Evolution Rehabilitation and Personal Training Ltd

Whitewater Web Solutions

Brightworks

Spa Sensations

Lauren Canzius
General Manager, Media Relations & Communications
Run The Dream
lauren.canzius@runthedream.ca

autism

On World Autism Awareness Day Have Hope But Do Not Sugar Coat Autism Realities

History is being made today; the first World Autism Awareness Day as declared by the United Nations General Assembly. Qatar led the international effort to being about this result and that effort should not be overlooked or diminished. In North America and Europe there is a movement which has tried to romanticize and glorify "autism"and which actively attempts to suppress discussion of the harsher realities faced by many autistic people. Governments, particularly the Canadian government of Prime Minister Stephen Harper, have been quick to point to the views of people in this movement as an indication of lack of agreement on what should be done to help persons with autism thus justifying the Harper's government refusal to take serious steps to address Canada's autism crisis.

Almost everything about autism is controversial in the extreme. Debates roar on over the causes of autism. Even Applied Behavior Analysis, ABA, a well documented, well researched autism intervention is criticized relentlessly, often by people who have had no experience with ABA. Some of these people know nothing more about ABA beyond the extremist rhetoric of anti-ABA activisits who themselves generally have no experience and little real knowledge of ABA. The ABA critics ignore the millions of parents, thousands of autism experts, hundreds of studies and numerous professional reviews by responsible expert agencies which have endorsed ABA for decades as the educational and health intervention of choice for autism, an intervention documented by years of study as effective at making real gains in intellect, behavior, communication and socialization skills for autistic children

Even the mention of the existence of severely autistic or low functioning autistic persons offends some people. Within the world of autism there is an ideological group sometimes self referenced as Neurodiversity, which perverts logic and common sense and asserts that Autism Disorder is not in fact a disorder, that somehow it is a good thing that some children develop the limited communication, social and intellectual and behavioral characteristics that lead to diagnoses of Autism Disorder. Mention the reality, the FACT, that some autistic people hurt themselves very seriously by self aggression or that they lack understanding of the world such that they require 24/7 supervision and care, in some cases for the duration of their lives and the Neurodiversity ideologues react with sarcasm, hostility and anger.

While they are quick to search history and speculate that every known genius in history was an "Aspie" or an "Autie" the Neurodiversity ideologues do not want parents of children diagnosed with actual Autism Disorder with profound developmental delays to talk about their children's existence and challenges; challenges not shared by the ND cult. Mere mention of 14-year-old Kristi Jansen the severely autistic young lady featured in one of the Vancouver Sun's excellent Faces of Autism series is enough to set off anger and hostility on autism discussion forums like Autism Speaks now dominated by Neurodiversity advocates.

Accepting autism should not mean the kind of autism acceptance which views autism as a joy. Autism is a disorder. The people diagnosed with Autism Disorder who have limited communication and social skills, serious behavioral challenges and in some cases intellectual deficits, should not be ignored in shame and denial. Their realities too must be accepted. There is no "joy" in knowing that your child, diagnosed with Autism Disorder and profound developmental delays, will never know a life of independence, that he will be cared for by strangers long after you are dead.

My son Conor, diagnosed 10 years ago with PDD-NOS, subsequently changed to Autism Disorder with profound developmental delays. lifts my spirits every day and makes my experience of life richer and more meaningful. Although I do not find joy in my son's Autism Disorder I take great joy and find great happiness in him. I accept him and the fact that he has an Autism Disorder but instead of surrendering to the seductive logic of the Neurodiversity movement, instead of embracing his autism as a "good thing" I try to help him overcome the deficits which mark his Autism Disorder. That to me is true autism awareness and true autism acceptance. That to me is being a responsible parent.

Today I will be aware of Autism and I will discuss it with many people in my daily life. I will be of service to my son and other persons with autism by speaking the truth about Autism Disorder. I will tell people there is hope for improvement by intensive early ABA intervention and the incredible explosion of autism research, the Autism Knowledge Revolution know taking place, but I will not sugar coat the realities of autism disorders to make others .... or me .... feel better.

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Will World Autism Awareness Day Raise Autism Awareness or Create Autism Confusion?

April 2 is World Autism Awareness Day. Hopefully the UN declaration will have the effect of creating real awareness of Autism Disorder and the related Pervasive Developmental Disorders. The prospects of that happening are slim though. It is much more likely that more confusion about autism will be created by the large media organizations such as CNN that dominate world protrayal of autism.

The biggest obstacle to generating real autism awareness will be big business, the big business of maintaining ratings for a large news organization like CNN. To generate media attention CNN will provide feel good stories. CNN will, yet again, interview Amanda Baggs, a "voice of autism" largely created by past CNN promotion. Ms Baggs is a very intellligent and articulate person in her late 20's diagnosed with a pervasive developmental disorder as an adult. She was able to speak throughout her youth and adolescence, had friends and even attended Simon's Rock College for gifted young people. Ms Baggs was previously diagnosed with a variety of other disorders and, prior to meeting an autistic person, and subsequently obtaining her own autism diagnosis, she wrote elequently on topics like schizophrenia, TLE, elves and fairies.

Now, CNN hangs on her every typewritten word, as a true "voice of autism". Ms Baggs story bears no resemblance to that of my son who has very little oral communication ability or to the many autistic people I have met in 10 years of autism advocacy. I am not saying Ms Baggs is not autistic, she has a medical diagnosis, but her autism is the only one I have ever heard of where a person who can communicate orally thoughout her life becomes unable to communicate orally as an adult.

CNN will show other remarkable stories of autistic persons who, thought to be "retarded" ,have become able to communciate through typewriters, technology and Facilitated Communication. What they will probably not do is visit the autistic persons living in residential care facilities because they can not live on their own or visit those autistic people who can not, and, unlike Ms Baggs, never could communicate orally or by any other means. The middle aged lady in the New York residential care facility who could not tell the world that she was being abused by staff because she could not communicate at all, the children and adults who hurt themselves seriously.

CNN will probably not tell the world that the Facilitated Communication they help promote with their feel good stories has been discredited by serious responsibile agencies which have reviewed FC and found that the "communication" is often a reflection of the facilitator's thoughts not the autistic person. (When an autistic person uses technology without a facilitator it is properly described as Augmented Communication not Facilitated Communication). Nor will CNN be likely to mention the recent case in Michigan that saw false sex abuse charges dropped after a family had been ripped asunder and suffered as a result of communications, purportedly from their autistic daughter, which appeared to have been influenced by the "Facilitator."

Will CNN help bust autism myths and raise real autism awareness or will it simply continue to create new myths and create more confusion? We should have a better idea on April 3, 2008.

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Not Goin' Back CD Launch By Cathy Hutch

Last night I attended the Not Goin' Back CD Launch by Cathy Hutch at the Musiplex in Fredericton. Cathy has a tremendous voice and she gave it her all on every song, leading off with Not Goin' Back a song that she hopes will inspire people, even one person would be worth it, to make healthier life choices.

Above Cathy poses with BJ McKelvie before they both poured their hearts into I'm In Here the song for autism that is a hit on YouTube with 9,914 views as I type these words. And it is receiving play on radio stations around the world. In the bottom picture Autism Society New Brunswick vice president Lana Thompson helps out at the door.

Cathy also spoke about her personal connection to autism. She has a profoundly autistic adult daughter who is living in a residential care home in New Brunswick.

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8 Year Old Autistic Boy Charged for Biting Teacher

According to the Tifton Gazette an 8 year old non verbal autistic boy at Horizon Academy in Tifton, Georgia has been charged with assault after he bit his teacher. The teacher claims to have been walking by the student, engaged in regular teaching duties, when he reached up and bit her on top of her right arm. (This seems a little strange if the boy was seated how was he able to reach up and bite her on top of her arm while she walked by?).

I am amazed that an 8 year old non verbal autistic boy was charged with assault in this case. Many severely autistic children bite themselves and others. It is sometimes a part of their neurological disorder. The boy might well have been overwhelmed by his placement in a classroom with other students and might have needed instruction in a quieter less stimulating environment.

On the basis of the facts reported in the Tifton Gazette .... it would not appear they know all that much about autism in Tifton, Georgia.

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Autism and the Media - CNN's Shameful Non-Coverage of Severely Autistic People

CNN is continuing its shameful treatment of persons with severe Autism Disorder. If your only knowledge of autism was garnered from viewing CNN broadcasts or blogs you might think that autism is not a disorder, that every autistic person finds a way to communicate and that all autistic persons live happily ever after. You would not know that many persons with severe Autism Disorder, not Aspergers, not PDD-NOS, but Autism Disorder with profound developmental delays, require constant care and supervision. Some live their lives in residential and institutional care facilities. Some are assaulted in their residential facilities and lack the communication ability to express themselves to others. You would not know these things because CNN does not cover the "feel bad" autism stories, only the "feel good" autism stories.

CNN is a news organization and one would think that between interviews with Amanda Baggs they would find time to MENTION the fact that there are many seriously autistic persons who live desperate lives. They might, for example, cover the story of the middle aged autistic woman in a New York residential care facility who was physically abused and assaulted by attendants but lacked any means of telling anyone because she could not speak, write or type to tell what was happening to her. The situation came to light only after another attendant brought it to light and it was confirmed by video cameras in the facility. CNN might also tell the stories of autistic people who hurt themselves seriously by biting and head banging or those who simply wander off sometimes found safe and sound .... sometimes not.

CNN could tell you these stories but it won't because they are not "feel good" stories. Such stories are not as good for the ratings as the feel good stories. CNN would prefer to tell you, several times in fact, the story of Amanada Baggs an autistic persons diagnosed as an adult who types as a means of communication. CNN does not mention that Ms Baggs, before her autism diagnosis, and by her own voluminous internet writings, spoke to others, used speech to communicate, had friends, and attended Simon's Rock College for gifted young people. CNN does not give that full picture because it wouldn't make such a great feel good story. It makes for a much better story line to go along with the pretense that this person is non-verbal and communicates via technology.

At least CNN has started to feature autism stories other than Amanda Baggs of late. But once again it goes for the ratings oriented feel good stories. In Autistic poet gives rare glimpse into mystery illness CNN tells the tale of Tito Mukhopadhyay a non verbal Texas man previously thought to be retarded who can type and even write poetry. It is a genuinely heart warming story and I am happy for Mr. Mukhopadhyay and his family. And I do acknowledge that CNN does pay lip service to other more severe autism realities in this story ... with one line:

Whatever autism is, its symptoms range from a mild form to rendering individuals dependent on others for life.

Now if only CNN will actually do a feature on the lives of those autistic persons who CAN NOT communicate by keyboard or otherwise and who live their lives dependent on others. Maybe some day CNN will have an Anderson Cooper Katrina moment, cease with the "great job, Brownie" coverage of autism and show the world the harsh realities of life for those with serious Autism Disorder. Mr. Cooper has been part of the Amanda Baggs autism feel good spin so it probably won't come from him this time but maybe some younger journalist, a real journalist at CNN, will feel it is time to stop misleading the world about autism and show the whole range of autism realities. Real autism acceptance means accepting the harsher autism realities faced by many persons with Autism Disorder and their families.

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Autism, Vaccines and A Shot in the Dark by Cornelia Read

I am not a member of either camp in the mercury /thimerosal/vaccines cause autism war . While I do not promote the vaccine autism theory I have never ruled vaccines, mercury or thimerosal as possible causes or contributing factors, along with other environmental factors, to the startling increases in autism. Nor do I subscribe to the easy assumptions promoted by the Neurodiversity faithful that the entirety of these increases is due to changing diagnostic definitions and criteria of autism, greater societal awareness and other social factors although I accept that these factors undoubtedly explain part of the increase.

The amazing research being conducted on the genetic bases of autism does not rule out environmental causes. Genetic conditions may create predispositions toward autism without being wholly explanatory of the development of autism. The fact that identical twins can have one autistic and one non-autistic twins suggests that external or environmental factors are also involved.

Nothing divides the autism world nearly as much as the mercury wars. Although I recognize the dangers posed by under vaccination of children and do not subscribe myself to the thimerosal causes autism theories I still try to keep an open mind and read new information as it emerges. Usually I try to read, to the best of my ability, and with the aid of professional interpretation, the new scientific literature on the subject. Most internet commentary is simply a rehash of fixed points of view and of questionable value no matter which camp it originates with but there are exceptions.

Writer Cornelia Read has written a blog comment called A Shot in the Dark at The Naked Truth about Literature and Life where she is one of the authors who "wrestle with the naked truth about literature and life". I recommend to anyone interested in autism who still has an open mind about the subject to read Ms Read's blog comment. It is well written and covers a lot of interesting ground, including the tobacco industry/cancer cover up, the "refrigerator moms theory of autism causation", the Simpsonwood conference, the rebuttal to the AAP provided by Dr. Michael Wagnitz father of an autistic child and a toxicologist, and the Polling case. Ms Read's comment is well written and thought provoking ....... if you are still open to thinking about this issue.

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Run the Dream - Jonathan Howard Runs Across Canada for Autism

INSPIRED YOUNG CANADIAN RUNS ACROSS CANADA FOR CHILDREN'S AUTISM CHARITIES

Jonathan Howard's Run The Dream Campaign is Targeted to Raise
$2.5 Million for Autism

On March 25, 2008, in St. John's NL, Jonathan Howard dipped his shoe into the Atlantic Ocean, signifying the beginning of an eight month solo run across Canada, finishing in Victoria, BC on or about November 21.

The run will cover approximately 9000km, crossing 10 provinces and more than 650 communities across the country. The campaign, with the inspirational name Run The Dream, is targeted to raise $2.5 million to benefit children affected by Autism Spectrum Disorder (ASD) and their families.

In partnership with Autism Society Canada, Jonathan is proud to dedicate his run to the cause and to children everywhere, "I want children to dream like anything's possible," says Jonathan. "This run is my way of telling children and their parents to never stop dreaming." Working together, Autism SocietyCanada and Run The Dream will raise awareness about ASDs. "Children, youth and adults with ASDs and their families from coast-to-coast will be watching and cheering Jonathan on as he Runs the Dream! " says Kathleen A. Provost, CFRE- Executive Director, Autism Society Canada.

Day one of the run included a visit to St. John's City Hall, Mile Zero of the Trans Canada Highway , a rally with students at Memorial University and an official launch with the Autism Society of Newfoundland and Labrador at the Elaine Dobbin Centre. From St. John's, Jonathan will continue to crossNewfoundland toward the town of Holyrood.

"We the Autism Society of Newfoundland and Labrador, no strangers to chasing the dream, will be with Jonathan, in spirit, every step of the way," says Joyce Churchill President of Autism Society of Newfoundland and Labrador .

Coinciding with Jonathan's run is the first annual United Nations World Autism Awareness Day taking place on April 2. He will be near Gander NL into the 9th day of his run at that time.

Kicking off the campaign was a launch party on March 20 in Jonathan's home town, Mississauga, ON. Events and fundraising opportunities are scheduled throughout the eight-month campaign in cities across the county. You can log on to www.runthedream.ca for more information or to make a donation.

Jonathan Howard, 24, McMaster University alumnus, and accomplished athlete developed the Run The Dream campaign to help raise awareness of the challenges faced by children with ASD and their families. Jonathan appreciates the groundswell of support that has already formed behind his effort and would particularly like to acknowledge the contributions of the sponsors (listed below) of Run The Dream.

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For more information or to schedule an interview with Jonathan Howard please contact Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4.

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