Saturday, February 09, 2008

MY DAD IS WALKING TO OTTAWA TO RAISE AWARENESS ABOUT AUTISM! Facebook Group


Right now a dedicated Dad, Stephan Marinoiu, in a real display of courage is walking from Toronto to Ottawa to raise awareness for autism. His daughter Lia has started a Facebook Group called MY DAD IS WALKING TO OTTAWA TO RAISE AWARENESS ABOUT AUTISM!

http://www.facebook.com/group.php?gid=8363327485

For those of you who are not from Canada, or have never visited that area of Ontario during the winter, what Stephan Marinoiu is doing takes real courage and dedication. Visit Lia's Facebook group to see pictures, read updates and show your support for Stephan Marinoiu's autism trek.

Senator Jim Munson Supports Stephan Marinoiu Autism Trek

News Release

SENATOR JIM MUNSON SUPPORTS STEFAN MARINOIU IN HIS WALK FOR AUTISM

Thursday, February 7, 2008

OTTAWA, February 7, 2008 – The Honourable Jim Munson (Ottawa – Rideau Canal) extends his support to Stefan Marinoiu who has embarked on a mission to walk from Toronto to Ottawa to increase awareness about autism and the need for increased funding for its treatment. Mr. Marinoiu is the father of a son with autism. The Senator has contacted Mr. Marinoiu’s family and will continue to closely follow his progress.

On the morning of Thursday, January 31, 2008, Mr. Marinoiu left his Toronto home and started walking to Ottawa. His initiative was not carefully planned nor was it in any way publicized – it even caught his wife and older daughter by surprise. Rather, it was the result of the accumulation of frustrations and the feeling of desperation shared by many parents of autistic children. It has now been a week since Mr. Marinoiu’s departure and he has already arrived in Kingston.


Senator Munson wishes Mr. Marinoiu the best of luck with the rest of his journey and assures him that he will be there to welcome him upon his arrival in Ottawa.


Senator Munson launched the Senate Inquiry into the treatment of autism in Canada. This resulted in the publication of the report of the Senate Committee on Social Affairs, Science and Technology entitled Pay Now or Pay Later. Follow this link to view the report:


http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repfinmar07-e.htm


- 30 -


For more information, please contact: The Honourable Jim Munson Senator (Ottawa – Rideau Canal) Tel: (613) 947-2504 or Lia Marinoiu (Daughter of Mr. Marinoiu) Scarborough ON (416)-412-7656


Autism and Potential Environmental Causes - Maternal Antibody IgG

Maternal IgG (an antibody) may be a factor in causing autism according to a study conducted by researchers from the UC-Davis MIND Institute. The study report, Stereotypies and hyperactivity in rhesus monkeys exposed to IgG from mothers of children with autism, by researchers Loren A. Martin, Paul Ashwood, Daniel Braunschweig, Maricel Cabanlit, Judy Van de Water, and David G. Amarala, is currently an article in press in Brain, Behavior, and Immunity and the abstract is available on line from Science Direct. The report notes an emerging consensus that Autism Spectrum Disorders have multiple etiologies (causes or origins) and indicates that the study tested the proposition that one cause of ASD may be exposure of the fetal brain to maternal autoantibodies during pregnancy. The study essentially involved comparing a group of rhesus monkeys exposed to human IgG collected from mothers of multiple children with ASDs to rhesus monkeys exposed to IgG from mothers of multiple typically developing children and to a further control group of untreated rhesus monkeys.

As described in the Science Direct abstract:

"four rhesus monkeys were exposed prenatally to human IgG collected from mothers of multiple children diagnosed with ASD. Four control rhesus monkeys were exposed to human IgG collected from mothers of multiple typically developing children. Five additional monkeys were untreated controls. Monkeys were observed in a variety of behavioral paradigms involving unique social situations. Behaviors were scored by trained observers and overall activity was monitored with actimeters. Rhesus monkeys gestationally exposed to IgG class antibodies from mothers of children with ASD consistently demonstrated increased whole-body stereotypies across multiple testing paradigms. These monkeys were also hyperactive compared to controls. Treatment with IgG purified from mothers of typically developing children did not induce stereotypical or hyperactive behaviors. These findings support the potential for an autoimmune etiology in a subgroup of patients with neurodevelopmental disorders. This research raises the prospect of prenatal evaluation for neurodevelopmental risk factors and the potential for preventative therapeutics."

A helpful definition of IgG can be found at the Dalhousie University Faculty of Medicine Immunology Bookcase web site. The definition points out that IgG is the most abundant form of antibody in the blood, that it is able to leave the blood stream and enter tissues and that it is the only form of antibody to pass the placental barrier:

IgG is the most abundant form (class) of antibody in the blood (serum concentration is 13 mg/ml !). There are four subclasses of IgG which are all monomeric and they usually have a very high affinity for antigen. Unlike IgM, IgG is able to leave the blood stream and enter tissues.

IgG is also the only class of antibody to pass the placental barrier. Therefore IgG provides the only antibody protection for newborns until their own immune system is able to contribute to antibody production.

Thursday, February 07, 2008

Autism Trek

Stefan Marinoiu is walking 452 kilometres from Toronto to Ottawa to raise autism awareness in Canada. Specifically he plans to speak with the federal government about increasing funding to support families like his who are dealing with autism and to fund more autism research. Mr. Marinoiu's trek is motivated by autism reality, the reality of raising a 15 year old autistic boy:

Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.

Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.

"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."

- The Belleveille Intelligencer

Rhetoric about finding the joy in your child's autism does not help families like the Marinoiu's. Real solutions to difficult and at times heart wrenching challenges are needed. Hopefully the federal government will give Mr. Marinoiu an audience in which they listen to his concerns and come up with ways it can help families like the Marinoiu's. Not every autistic person makes submissions to the Supreme Court of Canada or the Canadian Senate. Some face much more serious challenges and require much more help to live a decent life in this country. Hopefully Prime Minister Stephen Harper and Health Minister Tony Clement will listen to this dedicated Dad who has put it on the line to trek from Toronto to Ottawa in the cold Canadian winter.

Wednesday, February 06, 2008

Conor the King of Snow Mountain















It was a mild afternoon today and as we headed to the car for a trip down town Conor decided to climb the snow drift beside our driveway. It has been a traditional Canadian winter with lots of snow. Conor enjoyed himself on the top of his snow mountain. Like anyone who grew up in Canada I knew exactly how good he felt up there. We ARE Canadian.















Einstein's Alleged Autism Is Speculation Not Fact


WNDU has an interesting autism article and video feature Autism: Understanding the Puzzle on its web site WNDU.com. The feature is helpful in stressing different kinds of autism and providing links to autism resources. The video includes footage of a family's children with different autism disorders. One drawback though is that the feature opens by asserting as fact the speculation that Albert Einstein was autistic.

"What do you think of when you hear names like Albert Einstein or Dan Aykroyd? It's likely Einstein's brillance comes to mind and Aykroyd's comic timing. But did you know both the physicist and comedian had or have forms of autism?"

I don't know if Mr. Aydroyd has an autism diagnosis disorder or not but Albert Einstein did not in the sense that he was never diagnosed with autism . There are some who speculate that Einstein was autistic because of some known eccentric behaviors and his self description as a lone traveler. Speculation about historical figures having been autistic is common and includes Beethoven, Newton, Darwin, Jefferson, Hitler, Eamon de Valera, Orwell and Michelangelo to name only a few. The problem is that all such instances are simply speculation. The biggest drawback of any such speculation is the total lack of any clinical observation:


Speculative claims that historical figues displayed behaviors associated with autism spectrum
disorder include people who died before the work done by Hans Asperger and Leo Kanner in classifying autism spectrum conditions was completed. Autism has only been recognized since the 1940s, so many earlier cases may have gone undiagnosed.[2]Speculation about their diagnoses is based on reported behaviors rather than any clinical observation of the individual. Fred Volkmar, a psychiatrist and autism expert at the Yale Child Study Center says, "There is unfortunately a sort of cottage industry of finding that everyone has Asperger's."[3]

Wikipedia, People speculated to have been autistic

Unfortunately, speculation repeated often enough will sometimes becomes accepted as fact. When it does a myth is born. Albert Einstein was brilliant, he was different, but he was never diagnosed with an Autism Disorder.

Tuesday, February 05, 2008

Autism Class Action Lawsuit - Ontario Court of Appeal



Autism Class Action Lawsuit

at the Court of Appeal for Ontario


(Appeal hearing on a preliminary motion)



A crucial day in court that will determine whether

we will be allowed to continue the fight for full and timely access

to ABA/IBI intervention and in the schools



Monday February 11, 2008

at 10:30am


130 Queen Street West, Toronto

(at University Avenue , just west of City Hall)


Please join us to show your support for the families


For more information, please contact: t.sagharian@sympatico.ca


-----------------------------------------------------------------------------------------------------------------------------------


Backgrounder


Autism Class Action Lawsuit (Sagharian)


In 2004, five families representing six children with autism filed a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund ABA/IBI (Applied Behaviour Analysis/Intensive Behavioural Intervention) in the education system or without excessive and detrimental delays.


The plaintiffs have spent their savings, mortgaged and down-sized their homes, borrowed money and taken extra jobs to fund the services that their children require. They have had to make tough decisions about which services to access when they could not get both.


The case highlights key short-comings of services to children with autism. The families are suing the government and school boards for forcing the families of children with autism to make the impossible choice between the specialized services that help children with autism develop, and their right to a public school education. The families are also challenging the extensive waitlists for the AIP (Autism Intervention Program). The families want to ensure better access to publicly funded and quality services for children with autism in Ontario . They seek a change to the current approach to autism services, as well as compensation for the expenses that they have incurred as a result of the government and school boards’ past errors.


In 2006, the government and school boards brought a motion to strike the plaintiffs’ claim, and in March of 2007 a judge of the Superior Court of Justice, Mr. Justice Maurice Cullity, did strike portions of the claim. In response, the plaintiffs have appealed this decision to the Court of Appeal, with the hearing scheduled for February 11, 2008 at 10:30am.


In the aforementioned motion to strike, the government and school boards went after these families for $85,000 in legal costs. Fortunately for the families, Justice Cullity ruled in June 2007 that they should not have to pay these costs because they were raising an important public interest issue. In his decision, he stated:


"The public interest was involved not merely because this was Charter litigation but also because the community as a whole has a legitimate concern and interest in the welfare of disadvantaged children who are particularly vulnerable members of Canadian society.... It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of the lack of public funding for the programs they consider to be necessary for the educational and social development of their children. The fact that the Crown has now accepted a number of their contentions illustrates the value of this kind of public interest litigation and... the objectives of behavioural modification and access to justice are, I believe, sufficiently engaged to bear on the question of costs."


Autism Program in Ontario


In 1999, the province of Ontario, initially through the Ministry of Community and Social Services and now through the Ministry of Children and Youth Services, introduced the Intensive Early Intervention Program for Children with Autism (the “IEIP”, renamed the Autism Intervention Program "AIP" in August 2006) to provide services to children with autism. Initially, the program was only available to children under the age of six.



Both an Ontario Ombudsman report released in April 2004 and the report of the Office of the Provincial Auditor for Ontario in November 2004 identified several significant problems with the administration of the IEIP, including the difference between what it pays to the families and the actual cost of the treatment.


When Justice Kitely ruled in Wynberg/Deskin that the IEIP age cut-off violated the Charter’s equality guarantee under section 15(1), the government suspended the age cut-off (as of April 2005). This decision was over-turned by the Court of Appeal. Nevertheless, the IEIP/AIP has operated without discriminating based on age since Justice Kitely’s decision.


Unfortunately, the IEIP/AIP has long had a considerable waitlist that continues to result in eligible children not receiving necessary services. When the age cut-off existed, the waitlist was already so long that children would become ineligible for the program based on their age before ever receiving services. Since the elimination of the age six criterion for cut-off, the waitlists have become much lengthier, with the result that children with autism continue to be effectively denied necessary care.


The province spends millions of dollars every year on special education. In Ontario , all other children who require therapeutic or medical services are able to access services in a harmonized fashion alongside or with their education. However, when children with autism reach school age, they must either, enter a public school system that does not provide adequate education or support, where they will inevitably fail to improve and may regress, or enrol in a private program at considerable expense to their families and without the benefit of an integrated classroom setting. In contrast, children with autism in the United States are able to access ABA/IBI through the education system until the age of 21, and have been doing so for over 15 years.


Following the February 2007 recommendation in the Report of the Ministers’ Autism Spectrum Disorder Reference Group, Education Minister Kathleen Wynne announced that the Ministry would be directing school boards to provide ABA in their schools. This was an acknowledgment by the Minister that ABA was not previously being provided in school, that it could be, and that it should be. However, in a memo to school boards shortly afterwards, the Ministry indicated that ABA was already being used in some schools and that it would not be directing the use of IBI.


Then during the election campaign in the fall of 2007, the Liberal Party included in its party platform document the following promise:


“Helping more students with autism by providing $10 million to prepare schools to deliver IBI therapy on-site for the first time, a step forward made possible by our earlier decision to scrap the age-six limit for children with autism.”


Previous Autism Litigation in Canada


Auton: In 1998, families in British Columbia filed a lawsuit arguing that ABA is a medically necessary treatment and should be covered through the health care system. Although this case succeeded in the two lower courts in BC, it lost at the Supreme Court of Canada . The Supreme Court stated that the government did not have to provide ABA as ABA professionals are not registered health care practitioners and ABA is not delivered in a health care setting such as a hospital. Under provincial health care legislation, ABA could only be included as an add-on health service, in which case it would be at the discretion of the province as to how much to fund, which children would receive funding, and whether the province would fund the service at all.


Wynberg/Deskin: In Ontario, the Deskin case was filed in 1999 by a single plaintiff. This was followed by the Wynberg case filed in 2000, which eventually included 28 families. The cases were against the Ministries of Health, Education, and Social Services and were based on the Auton case. The families challenged the age cut-off in the IEIP as discriminating based on age and disability. They argued that the government acted negligently in the design and implementation of the IEIP. They also argued that the government breached their rights to life, liberty and security of the person by denying their children the benefit of an education.


When the 2004 Supreme Court decision in Auton was released, the Ontario cases had to reframe their claims, removing health and refocusing on ABA as an education issue. The Court allowed them to refocus their case, but prevented them from bringing evidence in support of this change in focus.


The Wynberg and Deskin cases succeeded at the trial court but then lost at the Ontario Court of Appeal. In denying their claims, the Court of Appeal specifically noted that it lacked significant evidence relevant to the case, including evidence related to ABA and education. It also stated that it was unfair for the comparatively small group of families participating in the case to get compensation while other families of children with autism languished. The trial judge, Justice Kitely, noted that the government had indicated that the school boards were the proper defendants to the claim and should have been a party. The families sought and were denied leave to appeal to the Supreme Court of Canada .


Adults with Autism - We Can Do Better, Much Better


The UK National Autistic Society has published results of a survey, "I Exist", indicating that adults with autism in the UK are ignored and their needs are not being met. The survey results reveal a "stark and often desperate reality", with most adults with autism lacking necessary support and services and living ignored and in isolation.

Here in New Brunswick attempts are made to address the needs of adults with autism but they are, in many areas, grossly inadequate. Families whose adult members with autism live at home have inadequate support, staff in private group homes lack autism specific training, and we have no institutional level facilities to provide residential care for the most severely autistic who are not capable of living in a group home facility. In fact we export our autistic adults and youths to other provinces, even to the United States, in search of treatment.

In the UK and in New Brunswick we can do better for adults with autism, much better.

Monday, February 04, 2008

"I would not claim that children are getting no mercury from vaccines" - Schechter

If you read the media accounts of the recent California epidemiological study you would reasonably conclude that ALL mercury/thimerosal was removed from California vaccines after 2001. Boyd Haley, a University of Kentucky chemist and proponent of the vaccine causes autism theory, describes that assertion as a false premise which undermines the conclusions of the California report:

Boyd Haley, a mercury researcher and leading proponent of the mercury-autism connection, maintains that the California study proves nothing because it is based on a "false premise" that children in California haven't been getting any mercury from vaccines over the past several years.

"They say that mercury was totally out of vaccines in 2001 ... and that's absolutely false," Haley declared.

Haley contends that some child vaccines still contained mercury preservative well after 2001, and that many children might have continued to receive the vaccines because California didn't actually enact a law banning them until 2006. If children were still getting mercury in vaccines after 2001, that could explain why autism rates didn't fall, Haley contends.

- Kentucky.com, Lexington Herald Leader, February 4, 2008

Dr. Robert Schechter, lead author on the report, stands by its findings but appears to acknowledge that not ALL mercury contaminants would have been removed from California vaccines after 2001:

"Autism rates increased consistently ... throughout this period, despite the exclusion of mercury from nearly all childhood vaccines," Schechter said in an interview. "Our findings are inconsistent with the idea that mercury could be the explanation for increases in autism."

As for Haley's argument that some children still might be getting some mercury from vaccines, Schechter said that could be true. But he said the general removal of thimerosal from vaccines still should have caused autism rates to fall -- if mercury were the culprit in the disease.

"I would not claim that children are getting no mercury from vaccines," Schechter said. "But the average exposure for the population has been substantially decreased over the past decade. If mercury from vaccinations was a primary cause of autism, you would expect rates to be dropping substantially."

-emphasis added, Kentucky.com

Jenny McCarthy Honored for Autism Efforts


In news that might anger the Neurodiversity blogger bees Access Hollywood reports that actress Jenny McCarthy has been honored for her efforts towards autism. At the 2008 Gridiron Glamour event – a celebrity fashion show/benefit auction designed to raise money for autism research Ms McCarthy received the 2008 Trailblazer Award for the attention she has brought to autism with her book and for her honesty. The Gridiron Glamour event itself raises funds for autism research.

Autism Rising in California - Why?



The headlines trumpeting the recent California epidemiological autism study as the final stake through the heart of the thimerosal /vaccine theory of autism causation are premature according to some proponents of that theory. They point to the 2005 expiration dates on some of the vaccines containing larger amounts of thimerosal, thimoseral containing flu shots given to pregnant mothers, immigration to California of children who would have received vaccine shots elsewhere, the combining effects of remaining trace amounts of thimerosal with other substances contained in the vaccine etc. Opponents of the theory point out that autism rates in California continued to rise AFTER most of the thimerosal was supposed to have been removed from the vaccines. Those opposing the thimerosal autism theory have the weight of medical and scientific opinion in support based on earlier epidemiological studies from other countries. The big question which remains though is WHY is autism still rising in California?

As stated by California DPH Medical Officer Robert Schechter, MD:

""We are reassured that we found no link between routine childhood vaccination and increases in childhood autism in the data," California DPH Medical Officer Robert Schechter, MD, tells WebMD. "But the finding that there are increasing numbers of kids who need services is not reassuring. We support efforts to find preventable causes of autism."

There are those who routinely claim that autism diagnosis increases are due entirely to the 1994 definition expansion of autism, greater public awareness and the knowledge among assessing physicians and parents that an autism label may provide access to services for their child. It seems safe to assume that such factors would be significant factors in the increases, particularly the change in definition of autism. But where are the studies showing that such factors explain entirely the large increases in autism diagnoses?

If environmental factors, such as the pesticides sprayed in California fields which may have contributed to elevated numbers of autism diagnoses of families living near those fields, are also at play should we not know about those factors and modify them? If we are in fact causing autism by use of various chemicals should we not modify our practices to prevent autism?

Saturday, February 02, 2008

Medicare for Autism Now Rally March 2 - Burnaby



"Medicare for Autism Now!" Rally

Sunday, March 2nd, 2008

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

Shadbolt Centre for the Arts

6450 Deer Lake Avenue

Burnaby

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 are still bankrupting themselves in order to provide treatment for their autistic children.

The current and limited funding provided through the provincial government’s social services ministries could evaporate tomorrow with the stroke of a bureaucrat’s pen. No legislation exists within these ministries to protect or enshrine our children’s medically necessary treatment.

In 30 years of "advocacy", the only two initiatives which have achieved ANY success for our children and families has been litigation, and more recently, focused political action. Both were brought by the members of FEAT of BC – a 100% volunteer organization.

Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. It is time for the Federal Government to act! We need to let those who govern and those who wish to govern that they are going to be held accountable at the ballot box in the next federal election.

Who should attend?

You - and every fair-minded Canadian you know!

Children with autism 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 sakes, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, 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.

Featured speakers will include:

Dr. Sabrina Freeman – Executive Director, FEAT of BC and parent

Jean Lewis – Director, FEAT of BC and parent

David Chan – Director, Autism Society of BC, FEAT of BC and parent

Dubravka Skrijelj – FEAT of BC member and parent

Dr. Glen Davies – Clinical Director - ABLE Developmental Clinic

Beverley Sharpe – FEAT of BC member and parent

Louise Witt – Director, Autism Society of BC, FEAT of BC and parent

David Marley – FEAT of BC member and Political Strategist

Please RSVP to www. featbc.org and forward this notice to anyone you think will be interested.

FEAT of BC: " To see justice is done"

Autism Rising in Alabama

WHNT.com, from Huntsville, Alabama, reports statistics from an Alabama state task force report which says that the number of children in Alabama's public schools diagnosed with autism has grown from 68 in 1990 to 849 in 2000 and to 2,297 in 2006. Those who accept, as an article of faith, that there are no environmental factors in the worldwide increases in autism will immediately point to the changes in the DSM diagnostic criteria and definition of autism, increased awareness, and families seeking access to services by seeking an autism diagnosis for their children, as the sole explanation for such an increase. Some of these arguments are undoubtedly valid explanations for explaining part of such increases.

The changes in definition of autism began primarily in 1994 with the DSM-IV the last major revision of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association. Some will argue that those changes did not have any impact for a couple of years afterward and that makes sense. But that argument does not explain the dramatic increase, the tripling of reported autism diagnoses in the Alabama report between 2000 and 2006. Here in New Brunswick Canada my son was first diagnosed with an autism disorder in 1998. The DSM changes were reflected in practice in this area at that time. By early 2000 there had been major reviews of Autism Disorders conducted in California, New York and Maine and by the office of the US Surgeon General. The definition changes and awareness arguments do not seem to offer much explanation for the nearly tripling of autism diagnoses amongst Alabama school children between 2000 and 2006.

Nor does the "parents pushing for autism diagnoses to obtain services for their children" argument, provide any assistance in explaining the Alabama increases between 2000 and 2006. The recent Alabama autism task force report recently reported that Alabama lacks the autism services offered by nearby states and across the United States.

The dramatic increase, the near tripling, of autism diagnoses amongst Autistic school children between 2000 and 2006 should raise serious questions about a possible environmental factors in contributing to such increases. Smug assumptions to the contrary are simply not based on evidence or sound reasoning.


Friday, February 01, 2008

Sloppy Autism Blogging - DMFP Gets It Wrong

I came across a link to one of my blog comments by daisymayfattypants of A Life Less Ordinary in which DMFP offered the following interpretation of one of my commentaries to which she had linked:

Based on a blog I just read, some parents of children with more severe autism don't consider our "high-functioning" children to be "truly" autistic. No, my son does not bang his head or try to gouge out his eyes, and no, he does not have severe developmental delays--his are moderate at worst. His intelligence test scores are wildly all over the map--in retardation territory for some things and in the highest percentiles for others. His manifestations of atpyical neurological wiring are there, and they meet current criteria for autism. I personally am not seeking a "cure" for him and don't think he needs one. Some modifications, yes. But I would think that about any six-year-old boy, regardless of his internal wiring.

The problem with DMFP's observation is that I never said that high functioning autistic children are not "truly" autistic. At no time have I ever said that persons with high functioning autism or Aspergers are not "truly" autistic as DMFP erroneously indicates. Of course DMFP's mischaracterization of my comment probably made for more entertaining reading.

Fiction is often a juicier meal than fact.

Thursday, January 31, 2008

Autism and Paternal Age

Paternal age is emerging as a potential cause or causal factor giving rise to autism. On this site, (as a father whose autistic son was conceived when I was 41), I have received several posts from a blogger/poster who has focussed on this issue . In Australia, couriermail.com.au reports that researchers at the Queensland Centre for Mental Health Research have found:

"adult mice born to older fathers have differently shaped brains and are generally more anxious and less adventurous than those fathered by younger animals. ... brain scans of the mice showed those born to older fathers had thicker cerebral cortexes."

The research team's senior investigator, John McGrath explains that "What we've found in the mice is reminiscent of autism because there's some reasonable evidence about early brain overgrowth in autism". McGrath also stated that the results need to be replicated before they are given scientific validity.

The couriermail.com.au article by reporter Janelle Niles states that previous population studies have found a six-times increased likelihood of autism than those born to dads in their 20's. Unlike my friends at Autism Street I am no statistician but on a common sense level, if the article information is correct, a six-times increased likelihood of autism in offspring for Dad's in their 40's compared to Dads in their 20's would seem to be .... statistically significant ... one which should be the focus of further research.

Wednesday, January 30, 2008

FMR4 - New Gene Link to Fragile X and Autism

The Autism Knowledge Revolution is continuing at such an explosive pace that it barely makes the news when an important new research development provides new insights into the biological structures and process of autism disorder. More of the genes associated with autism and related conditions, Fragile X, in the report that follows, are becoming known. At times it seems on a daily basis.

PLoS ONE has published a report - A Novel RNA Transcript with Antiapoptotic Function Is Silenced in Fragile X Syndrome of a study by researchers Ahmad M. Khalil, Mohammad Ali Faghihi, Farzaneh Modarresi, Shaun P. Brothers, Claes Wahlestedt of the Molecular and Integrative Neurosciences Department (MIND), The Scripps Research Institute, Jupiter, Florida which identifies a new gene FMR4 involved with Fragile X syndrome and potentially many cases of autism.

In New Gene Linked To Fragile X Syndrome -- Suggests Potential Targets For Autism And Other Neurological Disorders Science Daily translates from science into layperson the article published in PLoS ONE :


ScienceDaily (Jan. 30, 2008) — Scientists at The Scripps Research Institute have discovered a new gene involved in fragile X syndrome, a condition that often shares many symptoms of autism. The discovery may lead to new tests or treatments for several neurological disorders.

...

Fragile X syndrome affects thousands of patients worldwide with severe learning disabilities, often accompanied by anxiety disorders, obsessive-compulsive behavior, and attention deficit hyperactivity disorder. There are currently no therapeutic treatments available for fragile X syndrome. Approximately one-third of all children diagnosed with fragile X syndrome also have some degree of autism, according to The National Fragile X Foundation, including such behaviors as social anxiety, poor eye contact, and hand biting.

More than 16 years ago, scientists linked fragile X syndrome to inactivation of FMR1 gene expression, leading to the lack of a protein known as the fragile X mental retardation protein, now considered to be critical for neuronal function. Until the current study, no other functional gene other than FMR1 had been shown to be inactivated in the disorder.

However, Wahlestedt knew the FMR1 gene locus-a specific point on a chromosome-was not well mapped. Wahlestedt and his colleagues hypothesized that unknown regulatory genes might be transcribed from the region.

The new study shows at least one other functional gene-FMR4-from this genetic region is linked to fragile X syndrome, although the gene's exact role in the intact brain remains uncharacterized.......

For anyone wondering, as I was, what the term anti-apoptic means, it relates to apoptosis for which I found some definitions on-line:

MedicineNet.com:

Apoptosis:

A form of cell death in which a programmed sequence of events leads to the elimination of cells without releasing harmful substances into the surrounding area. Apoptosis plays a crucial role in developing and maintaining health by eliminating old cells, unnecessary cells, and unhealthy cells. The human body replaces perhaps a million cells a second. Too little or too much apoptosis plays a role in a great many diseases. When programmed cell death does not work right, cells that should be eliminated may hang around and become immortal. For example, in cancer and leukemia. When apoptosis works overly well, it kills too many cells and inflicts grave tissue damage. This is the case in strokes and neurodegenerative disorders such as Alzheimer, Huntington and Parkinson diseases. Apoptosis is also called programmed cell death or cell suicide. Strictly speaking, the term apoptosis refers only to the structural changes cells go through, and programmed cell death refers to the complete underlying process, but the terms are often used interchangeably.

Merriam-Webster OnLine

apoptosis

Main Entry:
ap·o·pto·sis Listen to the pronunciation of apoptosis
Pronunciation:
\ˌa-pəp-ˈtō-səs, -pə-ˈtō-\
Function:
noun
Inflected Form(s):
plural ap·o·pto·ses Listen to the pronunciation of apoptoses \-ˌsēz\
Etymology:
New Latin, from Greek apoptōsis a falling off, from apopiptein to fall off, from apo- + piptein to fall — more at feather
Date:
1972
: a genetically directed process of cell self-destruction that is marked by the fragmentation of nuclear DNA, is activated either by the presence of a stimulus or removal of a suppressing agent or stimulus, and is a normal physiological process eliminating DNA-damaged, superfluous, or unwanted cells —called also programmed cell death
— ap·o·pto·tic Listen to the pronunciation of apoptotic \-ˈtä-tik\ adjective

Monday, January 28, 2008

Autism and Censorship


I do not subscribe to the vaccine/thimerosal causes autism theory. It is necessary to state that at the outset because of the often heated, sometimes irrational nature of internet discussions of autism issues.

There exists a group of people, often called "neurodiversity" comprised of some high functioning autistic persons, some parents and professionals who share their view, who tend to promote a view of autism as a non-medical disability, a socially created disability which, from their perspective is simply different wiring of the brain. In the neurodiversity belief system autism is just a different way of thinking which, by their self identification with historical geniuses, can even be seen as superior to neurotypical thought. Positive views of autism are promoted. Negative realities of autism are suppressed. And now, in the American Academy of Pediatrics, the neurodiversity movement has a powerful new ally as it seeks to censor a work of fiction - the Eli Stone television series episode which apparently suggests a link between vaccines and autism.

The neurodiversity group is so rigid in its perspective that its adherents react with intense hostility to any negative portrayal of autism disorders such as that shown in the Autism Every Day video or the Ransom Notes campaign. The AED video presented the realities of autism from the perspective of caring parents. The Ransom Notes campaign was an attempt to create public awareness of some of the harsher realities of disabilities includig autism. While they have not been able to silence Autism Speaks, or the parents who created the Autism Every Day video, it is not for want of trying. And the "autism is beautiful" movement was a prime player in the successful effort to censor the Ransom Notes campaign, a campaign which was designed to focus attention on the harsher realities of various disabilities including autism disorders. Even Ph.D's, academics, presumably committed to the free exchange of ideas, bragged on the internet that they were doing "happy dances" over their success in shutting down the Ransom Notes campaign.

The Eli Stone episode is, on the surface, objectionable to the neurodiversity autism censors because it portrays a link between vaccines and autism. The episode features a family attorney who wins a court decision in which he successfully argues that a mercury-containing flu vaccine caused autism in a child. This alleged causal link enjoys little support in the medical and scientific communities and the AAP is presumably acting with good intentions when it seeks to censor the episode in question. But the same can not be said of the neurodiversity censors.

To be sure their criticisms of the vaccine autism link are consistent with accepted medical and scientific opinion but they want the episode and such discussion censored for another reason. They are offended by a medical model of autism disability. To them autism is a disability only because society imposes conditions on autistic persons which make it a disability. Even discussion of potential environmental bases for autism, anything other than a purely genetic model, is met with intense hostility by neurodiversity bloggers.

I have never been a fan of David Kirby, or his promotion of the vaccine causes autism theories. But I would not want to silence his voice, his opinion on this or any other subject. And I believe he has a point when he expresses alarm about the attempt to censor a television series episode in Scarier Than Fiction: Pediatricians Try To Censor ABC.

Autism Disorder is a medical disorder. Censorship is a severe social disorder which poses a threat to the health of a democratic society.


Autism Waiting Lists In Alberta


The disparity in funding for autism treatment in Canada has, in the past, led some families with autistic children to move to oil rich Alberta, which has substantial government funding available for autistic children. But the availability of better funding has not translated into better services in all cases as children are stuck on lengthy waiting lists awaiting assessment. In Situation critical for autistic children Nicki Thomas of Sun Media reports on the critical shortage of staff and funding threatening the futures of autistic children in Edmonton. Terri Duncan of Children's Autism Services of Edmonton indicates that there are staffing shortages everywhere in Alberta and children are waiting up to a year for assessment. That year is a critically important year lost for autistic children in need of treatment:

Duncan said if autism isn't detected and treated early on, disruptive behaviour - like hitting, kicking and biting - develop from an inability to communicate effectively.

"Those behaviours can make lives really difficult and hard to deal with," she said.

"We would be able to take a lot more children off the waiting list if we had more qualified, trained staff," Duncan said.

Many credible studies and reviews of professional literature have confirmed that early ABA intervention is critically important for achieving the best possible outcome for autistic children. Lengthy waiting lists for assessment deprive autistic children of a better future.

In New Brunswick many, including me, have thought that a medical doctor is the only professional who can diagnose autism disorders. I was informed though that Psychologists can also make the initial autism diagnosis.

New Brunswick, Alberta, or anywhere else in Canada, it would seem that an important step in addressing the autism crisis, a crisis which is very real for families of children with autism, is to take steps to educate GP's in diagnosing autism. The tools being made available now by the American Academy of Pediatrics and similar organizations should be used by all doctors and psychologists to ensure autistic children receive early ABA treatment during the important early years without time being squandered.