Friday, December 31, 2010

Adult Autism Residential Care and Treatment in New Brunswick 2000-2010 and Beyond; In 2011 Will Autistic Adults Remain Forgotten?

December 31 2010

The Honourable David Alward
Premier of New Brunswick and Minister
Responsible for the Premier's Council
on the Status of Disabled Persons

The Honourable Madeleine Dubé
Minister of Health

The Honourable Sue Stultz
Minister of Social Development

The Honourable Jody Carr
Minister Education and Early Childhood Development

Dear Honourable Premier and Honourable Ministers

Re: Adult Autism Residential Care and Treatment in New Brunswick 2000-2010 and Beyond; In 2011 Will Autistic Adults Remain Forgotten?

As this year draws to an end and a new year approaches I congratulate you on your victory in the recent election; on winning the trust of the people of New Brunswick. In facing up to the well known financial and economic challenges confronting New Brunswickers I hope, and trust, that this government will not neglect the eduction, health and social needs of New Brunswickers, of all New Brunswickers, including NB adults with autism disorders. In particular I hope, and ask in this open letter, that this government begin serious efforts in 2011 to address the residential care and treatment needs of New Brunswick adults with autism disorders.

I am the father of a 14 year old boy with Autistic Disorder, assessed with profound developmental delays. In plain language he is severely autistic. I have, because of his condition, been an active autism advocate in New Brunswick over the past 12 years. New Brunswick has enjoyed much success in addressing preschool and education needs of autistic children and youth in recent years taking an evidence based approach and we have done it in both of our official languages. These advances began under the government of Premier Bernard Lord and grew during Premier Shawn Graham's term in office. The success that has been enjoyed with autistic preschoolers and students stands in stark contrast, however, to the lack of progress in helping NB's autistic youth and adults who are severely disabled by their disorders and who have need of residential care and treatment which have not been provided in any meaningful sense in New Brunswick.

In 2005 the national media reported that an autistic New Brunswick youth was being held on the grounds of the Miramichi youth correctional facility. At that time NB autism advocates had already been advocating for several years for a modernized residential care and treatment system for NB youth and adults. No significant progress has been made over the past 10 years. During the recent election campaign Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell was interviewed by CBC and described a comprehensive modernized approach to autism residential care and treatment:


"Our greatest need at present is to develop services for adolescents and adults.


What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.


Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."


We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.


That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.


Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.


The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

The model described by Paul McDonnell has been described and advocated for in meetings with senior civil servants over the past decade but no action has resulted. Today we still have autistic adults living in facilities outside New Brunswick and in a variety of ad hoc accommodations. The most seriously challenged persons live in the psychiatric hospital in Restigouche. The current group homes have untrained staff . We need a modernized, centrally located facility that could provide treatment and permanent residential care for those most severely disabled by autism disorders and community based residential facilities around the province with properly trained staff. In 10 years there has been no progress in addressing the residential care and treatment needs of autistic youth and adults. I respectfully ask that your government begin planning, in 2011, to provide an evidence based system, as described by Dr. McDonnell, that will address these needs and provide a decent quality of life for our autistic youth and adult population.

Respectfully,

Harold L Doherty

Tuesday, December 28, 2010

John Hopkins Study: Gene-Environment Interactions Influence Psychiatric Disorders


Psychiatric diseases have genetic roots, but genes alone do not explain the entire disease ... When we study genes in conjunction with environmental challenges, we can better understand how diseases develop.” 

-  Mikhail V. Pletnikov, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, Study: Gene-environment interactions influence psychiatric disorders, John Hopkins University Gazette

In a John Hopkins University study pregnant laboratory mice bred with a specific genetic variation known as mhDISC1 were given a drug to stimulate their immune systems at the end of the first trimester of  their pregnancies while other mice with the same genetic variation did not receive the drug. The genetic variation involved is believed to be associated with mental illnesses in humans. The mice receiving the drug produced behavioral abnormalities, elevated anxiety, depressionlike responses, an altered pattern of sociability and a weakened response to stress. These responses were not present in the mice who did not receive the drug which suggested that the conditions resulted from the gene-environment interaction not the genetic variation alone. The study reports  also indicate that the same genetic variation can give rise to different illnesses depending on interactions with environmental factors and can impact on the size of different brain parts incuding the amygdala and the hypothalamus areas found in the brains of humans with major depression and bipolar disorder.
The study results appear to be another significant example of  an emerging paradigm shift away from viewing psychiatric and mental disorders as purely genetically determined toward an understanding of such disorders, including autism disorders, as arising from gene-environment interaction.  Future studies are likely to reflect this paradigm shift:

"Previous studies have suggested that the prenatal immune response to a microbe—be it a major illness or just transient flulike symptoms barely noticed by the pregnant woman—may be responsible for the increased incidence of adult psychopathology in humans. But this hypothesis, Pletnikov said, has been difficult to prove. Using this mouse model, he suggested, is a valuable way to study the relationship between gene-environment interactions and mental illness, and should be replicated to find more of these interactions to gain a better understanding of these relationships.

Future studies, he said, will try to sort out whether different timing or stimulating different parts of the immune system might lead to specific types of mental illness, and will explore the consequences of other environmental adverse events such as stress or drug abuse."
 
The John Hopkins University Gazette article by Stephanie Desmon of John Hopkins Medicine lists several supporters of the study including Autism Speaks.

Sunday, December 19, 2010

In 2010 the Gene Environment Interaction Model of Autism CHARGEd to the Fore


"Uncovering environmental causes of autism

CHARGE (Childhood Autism Risks from Genetics and the Environment) was launched in 2003 as a study of 1,000 to 2,000 children with differing patterns of development. The goal is to better understand the causes and contributing factors for autism or developmental delay. Three groups of children are being enrolled in the CHARGE study: children with autism, children with developmental delay who do not have autism and children from the general population. All of them are evaluated for a broad array of exposures and susceptibilities.

Refining our understanding of environment-gene interactions

Little is known about what causes autism or developmental delay. We will learn how genes and the environment interact to change children’s behaviors and skills. By studying a large number of children, we will discover which particular genes and/or environmental exposures might result in non-typical patterns of development and special subtypes of autism or developmental delay."

2010 could be known as the year that serious autism research arising from the genetic-environmental interaction model CHARGE'd to the fore with two major genetic-environmental focused autism research studies being published and receiving widespread attention.   2010 could also come to be known as  the year that  the "it's gotta be genetic" model of autism causation began its retreat from the battlefield in our attempt to understand autism causes  and seek autism cures.  Nothing can be done to retroactively counter the  time, financial resources,  attention and energies lost promoting the ill conceived notion that all autism disorders are 100% genetically based but there are now clear signs we are moving forward in our efforts to understand what causes autism disorders and real progress is being made.

Researchers involved with the recent mitochondrial dysfunction study and the proximity to proximity to highways (and air borne pollutants) study used data from the CHARGE program.  In each case the study authors are careful to report the limitations of their studies and to indicate that their studies indicate associations but do not, as yet,  identify specific causes of autism disorders. The studies  are exploratory and provide the foundation for further research.  Such studies are long overdue and are very welcome. 

A solid foundation for serious autism research has been established.  The autism research paradigm shift whispered about over  the last 3 years is now fully emerging and we are seriously studying the interaction of genetic and environmental research.  The gene environment model of autism is strongest in  California where researchers like  Dr. Irva Hertz-Picciotto, principal investigator on the CHARGE study, Dr.  Heather E. Volk  and Dr. Cecelia Giulvi use data from the CHARGE program as the basis for their research. 

The gene environment model of autism was also featured prominently at the  US Senate Committee on Environment and Public Works, Subcommittee on Children’s Health hearing entitled, "State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders"   in August 2010. One of those who made written submission to the hearing was Dr. Isaac N. Pessah, Director UC Davis Center for Children’s Environmental Health and Disease Prevention Professor of Toxicology and a Co-Investigator with the CHARGE study.

There are signs Canada has also  begun to embrace the gene environment model of autism causation.  The York Alliance Autism Research Group includes  Dr. Dorothy Crawford,  focusing on gene environment interaction as causes of autism disorders in her research. Even the US IACC (Interagency Autism Coordinating Committee) has acknowledged, albeit somewhat timidly, the emergence of the gene environment model in understanding autism causation:

"As with many complex disorders, causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. ... In addition, a number of other environmental factors are being explored through research because they are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as parental age, exposure to infections, toxins, and other biological agents may confer environmental risk. ... Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard,; Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors"

I have bold highlighted the last quoted statement from the IACC because it confirms exactly what has been said about autism research funding by autism researches from Dr. Teresa Binstock to Dr. Irva Hertz-Picciotto. Funding dollars have gone overwhelmingly toward genetic based autism research at the expense of environment autism research and that imbalance must be corrected.  Hopefully, as the gene environment model continues to gain ground amongst scientists involved in autism research that imbalance will also be corrected by funding authorities from government agencies to Autism Speaks.

It is time to CHARGE ahead with the gene environment interaction model of understanding and researching autism disorders. 

Saturday, December 18, 2010

Conor's (and Aunt Sandra's) Christmas Gift to Grammy and Grampy

I got a very nice phone call yesterday from my mother,  shown with Dad and Conor in the top picture taken a couple of years ago at Mom and Dad's home in Nova Scotia. My sister Sandra had printed up the next two pictures that I had posted to Facebook of Conor with me, and with Santa, at the Autism Connections Christmas party last Saturday. Sandra was going to give them to Mom and Dad as Christmas gifts but couldn't wait  and gave them right away. Mom called to tell me that the pictures of Conor looking so happy  really made Christmas for her and Dad this year. 




Wednesday, December 15, 2010

Autism Is Not A Severe, Even Deadly, Disorder? Susan's Story Says Otherwise

The following letter (addressee's name edited by me to protect that person's privacy) was sent to a long time New Brunswick autism advocate by Autism Society Canada Executive Director Kathleen Provost.  It tells the story of Susan, the devoted mother of an autistic child who struggled for years to obtain services and a positive life for her child with autism, and who ultimately took her own life.  The letter tells of the enormous challenges faced by Susan and the toll those challenges took on her.  Kathleen Provost of the ASC disagrees with those who say that autism is not a deadly disorder.  Susan's story is evidence of the strong challenges faced by those with severe autism challenges and the family members who care for them.   


graphic
... a national voice since 1976


Dear ***

I am sitting down, pen in hand, ready to talk to you about Autism Society Canada (ASC).
I have all my notes beside me, including: the number of committees that ASC has, as well as their challenges and their successes; news on the advances that we have made at the Federal level; a list of hurdles that are still ahead.
But I hesitate.
Because what I really want to talk to you about are people. I especially  want to talk to you about family members and caregivers; those very people who are challenged on a daily basis to support and care for a loved one living with an Autism Spectrum Disorder (ASD).
Her Story...
About six weeks ago we received a memorial donation from someone who I suspected wanted to send a gift to a charity in lieu of flowers.  We are always appreciative of those who think of us at a time that must be quite difficult.  Then the next day we received a few more donations in memory of the same person.
Her name was Susan.
A couple of days passed, and yet a few more memorial donation came in for Susan. (This is not totally uncommon.  Our organization may receive quite a few gifts in memoriam during the span of a year). However, I thought to myself that Susan must have been a pretty special person to have so many friends and family members who cared about her... and I felt as if Susan herself was sending us all her flowers.  As is often the case with memorial gifts to a national organization: I do not know the deceased personally, nor am I aware of their connection to Autism Society Canada.
This case is different.
A couple of weeks ago I received a letter from Jan, Susan’s mother.  She wrote to me to tell me about Susan. You see, Susan was a mother of a child living with an ASD.  She told me about how Susan fought for five years with her local school board to get her child in an appropriate class.  She told me how Susan’s child did not have friends at school or in the neighbourhood. She told me how Susan felt that she had failed as a mother and as an advocate for other children with autism.
She told me that Susan had taken her own life.
Losing Susan should not have happened.
I have choosen to recount this tragedy, which is an extreme case, to illustrate a point: there is a misnomer out there that autism is not deadly.
I beg to differ. 
I ask you to help us help parents, like Susan, like Jan.
Susan’s mom would like the gifts received in her daughter’s name to sponsor available programs.
Please make a donation today, your support will make a difference.  Click here to access our secure online donation link: http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s42156 .

Thank you in advance for your compassion and your kindness.  If you would like more information on Autism Society Canada, please visit our web site at www.autismsocietycanada.ca.

Wishing you peace this holiday season.
    Truly yours,

graphic

Kathleen Provost
Executive Director


PO Box/C.P. 22017, 1670 chemin Heron Road, Ottawa, ON K1V 0C2      Phone/Tél: (613) 789-8943
Charitable registration number:  13160 7657 RR 0001

Tuesday, December 14, 2010

Internet Autism Discourse: False Allegations from Knight Errant Sir Kev


Don Quijote by Honoré Daumier(1868)

Discussing autism issues on the internet often invites wild and baseless accusations no matter what point is being made.  Mention the word vaccine though and you can be guaranteed someone will react irrationally.  Such is the case of Kev Leitch, a knight errant  in search of a battle in which to prove himself,  who has falsely accused me of being an "anti-vaxxer".  For the record both of my sons have received the recommended and required vaccines,  I have never attributed my youngest son's autistic disorder to receipt of any vaccines and I have often recognized the important role of vaccines as a public health tool which has prevented and controlled some deadly diseases.  So why does Kev call me an "anti-vaxxer"?

My sin? I keep an open mind on issues about vaccine safety, the extent to which vaccines are used today and the way in which they are pushed and promoted in our modern society.  I particularly object to the constant smearing and marginalizing of anyone who questions vaccine safety.  Kev Leitch is one of those who, for reasons unknown to me, feels compelled to twist and slant comments of anyone, even this humble blogger, who do not treat vaccine issues as though they have been decided for all time by some holy text. 

Sir Kev's need to defend vaccines from all threats real or imaginary, present or anticipated, emerged again in this post  in which he accused me of  being an anti-vaxxer and making "implied" false statements.  Making an implied false statement is quite a trick.  I have no idea how I did it or what false statement I implied but I will leave that explanation to Sir Kev:

"However, as ever in the world of autism, the world of the anti-vaccinationists are never far behind. This passage from Harold Doherty demonstrates this bizarre need to always conflate the two:
The Poling family was successful in advancing a vaccine injury claim on behalf of their daughter Hannah Poling to the point of settlement by US authorities. Hannah’s father is Dr. Jon Poling, a practicing neurologist in Athens, Georgia, and clinical assistant professor at the Medical College of Georgia. He reviewed his daughter’s case in the Atlanta Journal-Constitution on April 11, 2008. In his comments Dr. Poling explained how mitchondrial dysfunction was related to his daughter’s case and to the existence of a possible mitochondrial dysfunction subgroup of autism disorder. He also discussed, as a medical doctor who expressly recognized the importance of vaccines in preventing serious diseases, the need for public health authorities to abandon fear tactics and conduct research to restore confidence in public health authorities and vaccines
In order to try and staunch the upcoming flood of misunderstandings and false statements like those implied by Doherty (and John Poling whom other mtDNA specialists such as John Shoffner clearly don’t trust on the issue), I contacted Professor Giulivi and asked her three simple questions about the study she is lead author of. She supplied three simple answers.
KL: Do you think, based on available science (including your paper) that vaccines cause autism?
CG: We do not have any evidence for this in our study. Our study was cross-sectional not longitudinal so it cannot point to any cause (not just vaccines), meaning we do not have anydata supporting one way or another."

At no point in my comment did I state that vaccines cause autism. I have never, ever stated that vaccines cause autism disorders and that was not implied in my article.  My position on autism disorders generally is that we do not know specifically what causes them but they appear to be caused by the interaction of genetic and environmental factors.  We do not know what specific environmental factors are involved because so little research has been done on the environmental side of the equation.  There are many possible environmental factors which MAY cause autism disorders including vaccines, particularly those given to pregnant women. I have maintained, and still do, that more research should be done on all possible environmental causes or triggers of autism disorders including possible vaccine triggers.  For taking these positions Kev Leitch falsely accuses me of being an "anti-vaxxer".

Nor did I state or insinuate in my comment that mitochondrial dysfunction causes autism disorders.  I did indicate that the study will prompt much more research on possible connections between mitochondrial dysfunction and autism disorders.  I also  commented on the fact that any mention of  a possible connection, and of a possible vaccine connection, would result in more of the kind of smearing and marginalization that was seen in the Economist article that I had referenced.

The Economist article that I quoted in my comment was a knee jerk attempt to find a target (lawyers) in anticipation of issues arising from the Autism and Mtiochondrial Dysfunction study.  Kev Leitch has, once again, done exactly the same ... as expected.

On to the next windmill Sir Kev.

Monday, December 13, 2010

2010 Autism Words of the Year: Mitochondrial Dysfunction

The word mitochondria is not new to discussions of autism disorders.  The Poling case "injected", no pun intended, mitochondria into the debates over vaccines and autism.  The recent UC Davis study, by Cecilia Giulivi, Ph D., and other researchers, Mitochondrial Dysfunction in Autism, published in the December 1, 2010 issue of the Journal of the American Medical Association has brought the association between mitochondrial dysfunction and autism disorders into mainstream public consciousness and into mainstream medical legitimacy.  Make no mistake about  it we will now hear much, much more about the connection between autism disorders and mitochondrial dysfunction.

The Poling family was successful in advancing a  vaccine injury claim on behalf of their daughter Hannah Poling to the point of settlement by US authorities.  Hannah's father is Dr. Jon Poling, a practicing neurologist in Athens, Georgia,  and clinical assistant professor at the Medical College of Georgia.  He reviewed his daughter's case  in the Atlanta Journal-Constitution on April 11, 2008. In his comments Dr. Poling explained how mitchondrial dysfunction was related to his daughter's case and to the existence of a possible mitochondrial dysfunction subgroup of autism disorder.  He also discussed, as a medical doctor who expressly recognized  the importance of vaccines in preventing serious diseases, the need for public health authorities to abandon fear tactics and conduct research to restore confidence in public health authorities and vaccines:

"Mitochondria key

To understand Hannah's case, it is important to understand mitochondria, which act like batteries in our cells to produce energy critical for normal function. Because the government's concession hinged on the presence of Hannah's underlying medical condition, mitochondrial dysfunction, some claim the decision is relevant to very few other children with autism. As a neurologist, scientist and father, I disagree.

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as "rare." In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

Biological markers

Although unlikely, if the Portuguese studies are incorrect and mitochondrial dysfunction were found to be a rarity occurring in less than 1 percent of all autism, it would still impact up to 10,000 children (250,000 worldwide), based on current estimates that 1 million people in the U.S. (25 million worldwide) have autism. If, on the other hand, the research showing that 7.2 percent to 20 percent of children with autism have mitochondrial dysfunction is correct, then the implications are both staggering and urgent.

Autism researchers do not currently understand whether mitochondrial dysfunction causes autism or is simply a secondary biological marker. Autism clearly has many different causes, and should really be separated into multiple autism(s). I propose that we clearly identify and research the subpopulation term of "mitochondrial autism," which is distinguished by its unique biological, but not genetic, markers.

Based on what we know now, it is time to follow the prestigious Institute of Medicine 2004 report regarding autism and vaccines:

"Determining a specific cause (for autism) in the individual is impossible unless the etiology is known and there is a biological marker. Determining causality with population-based methods requires either a well-defined at-risk population or a large effect in the general population."

A paradigm shift

When the IOM report was published, mitochondrial dysfunction defining an autistic subpopulation was not firmly established. Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker. I urge health officials and the IOM to embrace their own report and pursue this breakthrough in the science of autism. National public health leaders, including those at CDC, must now recognize the paradigm shift caused by this biological marker with regard to their current position of dispelling a vaccine-autism link.

In light of the Hannah Poling concession, science must determine more precisely how large the mitochondrial autism subpopulation is: 1 percent, 7.2 percent, 20 percent?

Based on the 2004 IOM analysis, if the mitochondrial autism subpopulation is found to be relatively uncommon, then all conclusions from prior epidemiological studies refuting an autism-vaccination link must be discarded. New studies then need to be performed exclusively with the mitochondrial subpopulation. If mitochondrial autism turns out to be common, then we could re-analyze the data from prior studies to determine if these studies were powered sufficiently based on a predicted effect size. If not powered appropriately, the conclusion refuting an autism-vaccine link would again have to be rejected. These statistical concepts are basic.

The current vaccine schedule, co-sponsored by the CDC and the American Academy of Pediatrics, injures a small but significant minority of children, my daughter unfortunately being one of those victims. Every day, more parents and some pediatricians reject the current vaccine schedule. In an abundance of caution, meaningful reform must be performed urgently to prevent the re-emergence of serious diseases like polio or measles.

Need for research

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

The mitochondrial autism scenario that my daughter has so eloquently painted has the CDC and public health experts logically cornered. Denial and fear tactics won't close Pandora's Box. Whether we find that mitochondrial autism is rare or common, there is urgent research left to be done to fully understand the interrelationship of vaccines, autism and mitochondria.

Reform of the vaccine schedule will be an important part of the solution, whether vaccines play a major or minor role in autism. Our public health agencies and programs need a reconstruction plan. Day one of the reconstruction hopefully starts at the Vaccine Safety Advisory Committee's Working Group, to be held at HHS headquarters today in Washington."

Dr. Jon Poling, as a neurologist,  is not an easy target for an anti-parent smear campaign.  His call for the need to understand mitochondrial dysfunction as a subset of autism could not simply be ignored.  Now with the JAMA published study by the UC Davis researchers mitochondrial dysfunction and its connection to some autism disorders will most certainly be debated and researched more intensively.  Those who foolishly believe that public confidence in vaccines, and other possible sources of mitochondrial disruptive products like pesticides, will be restored by simply attacking and marginalizing those who ask questions will soon have to wake up and face reality.  

The smear tactics have not worked, they will not work.  That will not stop them from happening though. Instead of attacking credible figures like Dr. Jon Poling or the UC Davis researchers who conducted the JAMA published story the Economist, after emphasizing the study limitations properly reported by the study  authors themselves, and trotting out the usual "correlation does not imply causation" caution,  responded with a favorite noted by Shakespeare centuries ago in Henry VI, part 2,  - "the first thing we do, kill all the lawyers".

The Economist,  recognizing the threat to commercial interests posed by mitochondrial dysfunction research in connection with autism, does not actually advocate killing all the lawyers, it simply wants to discredit them and the cause of autistic children and their families they might come to represent:

"The genetic condition in this particular case is rare: only four other examples are known. And no scientist—least of all Dr Giulivi—is suggesting that the new study bears on the question of environmental triggers of mitochondrial malfunction. But if faulty mitochondria do turn out to be a cause of autism, even if not in all cases, that question will have to be investigated. And you can bet your bottom dollar that somewhere out there is a lawyer wondering whether he can do just that."

With such attacks the Economist glosses over its assertion that mitochondrial disorder is rare.  It also glosses over the possible role of environmental factors in damaging mitochondria.  Dr. Poling addressed these arguments with  actual figures and analysis unlike the Economist which simply made the claim and quickly went  after a straw man.  Jenny McCarthy may not be in this fight, Dr. Wakefield is involved as an author of the study, and the study is JAMA published.  A new straw man is needed to deflect energy and attention from facts and analysis and lawyers are a tried and  true target .... at least when they represent the little guy.

The Economist though is firing a bullet with no bite. The fear tactics and smears, even the almost 100% dedication of funding for genetic based autism research,  have not worked.   The  silly attack on lawyers betrays the fear in the Economist's response.... the fear of the potential threat to commercial interests arising from mitochondrial dysfunction research findings,  a fear that may well have prompted the Offit Offensive which was launched aggressively in late 2008 and early 2009 after the Poling settlement, and mitochondrial dsyfunction,  had become public. Look for the UC Davis, JAMA published study, to provoke more hostile responses and diversions ...  as well as more research.

The JAMA study is a benchmark though.  Those who pretend that all is known about autism disorders and their causes, that autism is 100% genetic, that no further research is needed on important potential causes of the various autism disorders, are failing, their armies are struggling. They are losing the battle to freeze our knowledge of autism.

With the UC Davis, JAMA published study, we know more about autism disorders, and we will  be more inclined to  do more actual research, and learn much more  about the causes of autism disorders, whether they do, or whether they do not, implicate vaccines, vaccine ingredients or the many toxins produced in the products we consume and wear in our homes, workplaces and schools. 


"Mitochondrial dysfunctions", in my humble opinion, are the autism words of the year in 2010.

Sunday, December 12, 2010

Autism Speaks Role in Exploring the Environmental Causes of Autism and Other Learning Disabilities


Autism Speaks has been open to legitimate criticism on several aspects of its autism advocacy of late including promoting the views of those who do not view autism disorders as medical disorders and do not think that autism disorders should be cured.  AS even promotes the views of Alex Plank, a very high functioning young man, with no obvious or apparent autism deficits, who runs a forum which, amongst other disreputable behavior, actually permitted posters to cheer the passing of Dr. Ivar Lovaas.  On its official blog site though Autism Speaks has just given notice  that it can still engage in some  genuine, and much needed, autism advocacy with its sponsorship of, and reporting on, the Mount Sinai Children's Environmental Health Center's workshop "Exploring the Environmental Causes of Autism and Other Learning Disabilities".     , 

In Feeling exposed? Insights from a new meeting on environmental impacts in autism Autism Speaks board member, and co-founder and Executive Director of Safe Minds, Sallie Bernard provides an overview of “Exploring the Environmental Causes of Autism and Learning Disabilities” a conference  organized  by the Children’s Center for Environmental Health at the Mount Sinai School of Medicine in New York City run by Dr. Phil Landrigan.

Dr. Landrigan is no vaccine patent holder or industrial  or  pharmaceutical company apologist. His credibility on children's health areas is well summarized on Wikipedia.

"Landrigan's reputation rests largely on his role as a highly credible evidence-based advocate for public health, specifically in his focus on reducing the level of children's exposure to lead and pesticides and for his participation in the World Health Organization's global campaign to eradicate smallpox. 


He was also a central figure in developing the National Children's Study[1][3] and in the medical and epidemiological studies that followed the destruction of the World Trade Center on September 11, 2001.[4] Additionally, from 1995 to 1997, Landrigan served on the Presidential Advisory Committee on Gulf War Veteran’s Illnesses,[5] and, in 1997 and 1998, served as Senior Advisor on Children's Health to the Administrator of the U.S. Environmental Protection Agency, where he helped establish the Office of Children's Health Protection.


He has been awarded the Meritorious Service Medal of the US Public Health Service[6] and is a frequent consultant to the World Health Organization, which called Landrigan's work "instrumental in passing the Food Quality Protection Act of 1996."


In 2005, Landrigan, along with Drs. Ramon Murphy and David Muller, founded the Global Health Center, a division of the Mount Sinai Medical Center dedicated to finding evidence-based solutions to global health problems.[7]"

The Autism Speaks summary of the conference points out that the primary purpose of the conference was to highlight the fact that environmental autism science should now be considered mainstream.  Hopefully if this message permeates the consciousness of mainstream media decision makers it will  lead to fewer personal attacks on those who advance environmental theories of autism causation and more serious investigation of all possible environmental causes of autism disorders.  Some of the key points as reported by Autism Speaks:

"A few interesting bits of information came out of the conference. One was the definition of “environment” that the insiders use. It covers synthetic chemicals like pesticides, flame retardants and plasticizers; heavy metals like arsenic, lead and mercury; combustion and industrial by-products; diet and nutrients; medications, medical interventions, and substance abuse; infections; the microbiome; heat and radiation; and lifestyle factors. Some may be harmful; others protective. They may operate before conception, during pregnancy or in early life, and some may alter gene expression through epigenetic modifications to chemicals surrounding our genes. Craig Newshaffer, who runs the EARLI study to look at environmental factors among younger autism siblings, referred to the concept of the “exposome”, that is, everything we are exposed to and its effects on health. Dr. Birnbaum’ made the point that health does not equal medicine, and prevention through reduction in chemical exposures is of equal importance to health. Colleen Boyle from the CDC stated that the next prevalence report will be issued in April 2011. We will see if the 1 in 110 number from last year’s report has changed. New research from Korea was unable to confirm increased risk of autism due to parental age or low birth weight, which have been identified as risk factors in Western studies.


The most informative talk was by Dr. Irva Hertz-Picciotto from UC-Davis. She explained how changes in diagnosis do not account for most of the increase in autism rates, and how recent research by their group on mercury and flame retardant blood levels do not address whether these substances are causative for autism because the blood samples were taken years after the autism diagnosis. A paper out this week from UC-Davis found that proximity to traffic air pollution during pregnancy almost doubles the risk of autism. Another paper just accepted by a journal has found higher antibodies to cerebellar tissue in children with autism relative to controls, highlighting the immune component in autism.

Other than these interesting items, the conference covered minimal new ground as far as the science goes. Rather, the points of the meeting seemed to be to make the case that environmental factors research in autism must now be considered mainstream science and to showcase the work being done or about to be done to investigate the issue. Dr. Landrigan made the case for an environmental role by noting that the rate of autism has increased too much to be solely genetic, and that at most, genetics alone will end up explaining 40% of autism cases with the likely percentage much lower."

I appreciate Autism Speaks and Sallie Bernard's  reporting on this conference. I depart from Ms Bernard's description slightly in referring to the information as being just "interesting" points.  In my view it is critically important that the mainstream media, dependent as it is on advertising dollars from business interests, to hear directly from such credible sources as Dr. Landrigan that genetics alone does not explain the incredible increases in autism diagnoses, that environmental factors play a role.  It is also very important for people to understand that the environment can impact child neurological development in many different ways at different developmental times.  The specific reports by Dr. Hertz-Piccotto, herself a leading figure in environmental autism research, are worthy of substantial mainstream media attention.

Autism Speaks has stepped up to the plate with its support for this important conference and by reporting it on their official blog site.  But Autism Speaks can, and should, do more. No one can question the demonstrated ability of Autism Speaks to raise media attention for autism disorders.  Autism Speaks should use its ability to  break through the fog of mainstream media understanding of autism disorders and convince institutions like CNN, CBC, NY Times, Newseek, and all the major television networks to start understanding the environmental component of autism.

The Offit Offensive, with its focus on personally discrediting anyone who questions possible vaccine autism connections,  has dominated mainstream media discussion of any environmental component of autism.  That offensive has not worked and may have been counter productive. Regardless, the vaccine issue is only one component of possible environmental contributors to autism disorder increases as the conference highlights.  It is time that mainstream media began to demonstrate awareness of this reality. No one is better able to help the mainstream media understand the full scope of environmental issues and autism disorders  than Autism Speaks.  I hope  Autism Speaks dedicates more of its impressive resources to doing exactly that. 

Saturday, December 11, 2010

2010 Autism Picture of the Year


Robert Capovilla, right, is reunited with his family Sunday night, a day after the autistic teenager went missing, prompting a huge police search. Aunt Margaret Saracino and father Adriano Capovilla reach for Robert on his return home.
RICK MADONIK/TORONTO STAR
The best "autism" picture I saw in the mainstream media during 2010 is the Rick Madonik/Toronto Star picture, above,  of Robert Capovilla,  a young, low functioning autistic man,  shown being reunited with his parents after being lost in downtown Toronto, in biting cold weather,  for more than 24 hours.  

The picture speaks for itself.

Tuesday, December 07, 2010

Autism, Inclusion and Community Living Philosophy in New Brunswick - Ignoring the Evidence Has Not Worked

I agree with the principles of  inclusive education and residential care when they actually accommodate the complex needs of many with autism and other disabilities. I do not agree with New Brunswick's extreme version of full inclusion and community living that pretends to, but does not actually, accommodate those needs. In making these statements I acknowledge that my son has been accommodated in NB schools. It has increasingly been brought to my attention that children of other less outspoken (for a variety of reasons) parents have not always been as fortunate in seeking accommodation for the challenges of their severely autistic children.

As I grow older, as I look ahead to the fate that awaits us all as human beings I look at what New Brunswick has to offer  for residential care and treatment for youth and adults with autism disorders and other complex needs and I am concerned, very concerned. I look at the review processes that have been conducted in education and in residential care including the current consultation process by the Office of the Ombudsman/Youth Advocate and I grow even more concerned that nothing will change, that the same philosophy pushed by the powerful advocates of extreme inclusion and community living policies that have provided cover for so long for our failures to address realistically the needs of youth and adults with autism and other complex needs will grow more entrenched in an era of global economic uncertainty and belt tightening. I  am fearful, outright fearful that my son will live in a psychiatric hospital or an inadequate, inappropriate group home environment.  I grow increasingly fearful that the happy, joyful life he has lived with his parents will not survive when we are gone.

These out rightly philosophical ideologies are not evidence based.  They do not accommodate the individual challenges faced by many that they supposedly help.  Those who are most in need of help are simply ignored by those who relentlessly push this model in NB education and residential care.  When children are sent home from school, including autistic children, because they suffered meltdowns in the mainstream classroom full inclusion models do not question their philosophy and how it might have contributed to the problem. When youth and adults, including some with Asperger's Disorder and Autistic Disorder, are sent to live in correctional centres, hotels, hospital wards and psychiatric hospitals and even exported out of the country, the community ideologues do not stop and ask whether the inadequate group homes, staffed with poorly trained personnel, and justified by their philosophy might be a big part of the problem.  

My disenchantment with this philosophical giant that has such a stranglehold on NB education, health and residential care for the disabled began when my son came home from the general classroom with bite marks on his hands and wrists.  Local school officials did respond and accommodate my son allowing him to work with an autism trained teacher aide in a quieter individualized learning environment. I have raised my son's example with full inclusion advocates at most of the major reviews in NB over the last several years including the Mackay inclusion review, the Ministerial Committee on Inclusive Education and the Dialogue on Education meetings that were canceled when Education officials tired of being challenged to provide evidence to justify the extreme full inclusion model.  My son's example was acknowledged but the implications ignored.

I have also attended meetings addressing adult residential care where the community living advocates paint horror pictures of institutional care while ignore the inadequacies and gaps in our youth and adult residential care system.  Worst of all the community living advocates simply ignore the failures of their own philosophy based ideology that rules this province.  They make no mention of the persons living in psychiatric hospitals except to pretend that somehow their philosophy is not to blame.  

The fact is that Autistic children with severe challenges are often simply sent home when they are unable to survive in the mainstream classroom panacea of the full inclusion philosophers.  Autistic youth and adults are sent wherever when the community living panacea of residential care fails, time and time again, to provide for their needs.  I am not alone in questioning the full inclusion, community living philosophies as inadequate, non evidence based failures to accommodate our most severely challenged. Throughout my participation in the various processes I mention above parents, professionals and teachers have come to me at different times to thank me for speaking up when many of them are unable to do so or are fearful of doing so.

There have been, and are, others who have questioned the full inclusion philosophy/panacea. I provide here some links to some others who have spoken up. It is not an exhaustive link but I encourage you to read these sources if you are sincere about addressing the education and residential care needs of the severely disabled amongst us.

1. THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD - Yude M. Henteleff, C.M., Q.C.

It should be abundantly clear, having in mind the foregoing statistics, that for children who suffer from emotional, mental, behavioural, cognitive, sensory, physical, expressive language, visual and auditory difficulties (and often a combination of some of the foregoing), it is simply not possible to meet their diverse needs in one environment. One shoe simply cannot fit all. Indeed, total inclusion is a discriminatory concept because it limits the environmental choices, which groups of children and youth with differing difficulties have the right to make in their best interests. p.2

2. Let's talk about inclusion, full-inclusion and community living - Claire, mother of a severely disabled daughter, teacher, B.A., M.A., blogger (LIFE WITH A SEVERELY DISABLED CHILD)

This is the reality that full-inclusion ideologues ignore. My daughter is not safe in a regular classroom. Others cannot handle the stimulation, others need one on one, pull-out programs to get ahead and fix a few glitches. Can I tell you, in all honesty, that I would not have wanted my Eldest to have had in her classroom as many challenged kids as most full-inclusion classrooms face today, because she would have been bored to tears and her education would have suffered. School is not only about socialization, it is about education. Kids learn in different ways, at different paces. I know this. I am a teacher. ... Children who are in separate classrooms can be included in outdoor activities, in gyms, in music programs, in assemblies. ... there are a million other creative ways of including without sacrificing safety, socialization and education....That's my position. It's not cheap. It's why full inclusion is favoured. It's cheaper...make no mistake about it.
...

The same thing is true about living situations for adults with disabilities. Some are very high functioning and can thrive with minimal assistance. Others need more. Some disabilties are SO severe, however, as to require people with specialized training, really big hearts and minds, and very specific environments. Community living, as in group homes with staffed with DSW's, is not always appropriate. For some, a residential environment is better.


What is a "residential environment"? Well, certainly not a cell block with cages, people chained to beds and toilets, living on straw, okay? Oh, and hosed down occasionally to keep the lice down, and mush that serves as food passed through little holes in the wall. For Chrissakes. Yet these are the images brought up by full-inclusion ideologues again and again. ... I followed carefully when Ontario blitz closed all it's institutions. I read far too many stories of the severely disabled dying soon after the move...after having lived for over 30 years in the institutions. I also read a number of stories of those with the most severe behaviours being kicked out and turned away from "community living" environments, leaving frantic families searching desperately for solutions. .... Some severely disabled, either physically, cognitively or behaviourally need really specialized services that cannot be realistically provided in a group home setting. It's just a fact. I would love to see a residence like that for my daughter when she is an adult. I think it's createable...I think there are such things around here and there...or parents get together and come up with creative ways of making something similar happen by combining their finances. In any case, it won't come cheap. And that is always the problem in the end. My kid's life is never worth what it takes to make her both happy and safe...unless she stays at home. But...if she lives longer than I can hold out, I will have to find her something. Who knows what will be out there when the time comes...but I would vote for a residence any day, if it were well run, beautiful and appropriate."

3. Full Inclusion: One Reason for Opposition - Donald B. Crawford, Ph.D., professor of special education at UW-Eau Claire

"The experiments prove that achievement is not helped if multi-age grouping is used to allow students to pursue their own ends or to let everyone work individually. Full inclusion advocates want precisely this kind of enviroment and wish to eliminate direct instruction of homogeneous groups of students, which they consider "lockstep" instruction. By supporting full inclusion all the time, advocates hope to make it impossible to do direct instruction anymore. This will have a negative effect on achievement of all students.

There are several reasons for opposing a policy of full inclusion even though that policy sounds like the "right thing to do" on first hearing. As has been stated earlier, one reason is because full inclusion of an extremely wide range of abilities into general education classrooms makes direct, systematic instruction nearly impossible. In addition, once full inclusion is implemented, teachers are forced to change their teaching methods to more child-directed, discovery-oriented, project-based learning activities in which every student works at his or her own pace. This has never produced high levels of achievement anywhere it has been tried."


4.a. The Costs of Inclusion - John MacBeath, Maurice Galton, Susan Steward, Andrea MacBeath and Charlotte Page, A study of inclusion policy and practice in English primary, secondary and special schools Commissioned and funded by the National Union of Teachers, Published by University of Cambridge, Faculty of Education.

4. b.School inclusion 'can be abuse'- BBC report on The Costs of Inclusion and Interview with Professor John MacBeath:


"Prof MacBeath told journalists: "Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that's not meeting their needs." ... "You might call it a form of abuse, in a sense, that those children are in a situation that's totally inappropriate for them." ... He and co-author Maurice Galton stressed their report was not "anti-inclusion ... What concerned teachers was whether schools could provide a suitable education for those with complex needs."

5. Re-open the Institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds - Bernard Rimland, Ph. D., Founder of Autism Society of America


New Brunswick has a duty to take care of its most vulnerable citizens.  Today it must fulfill that duty in challenging times. The economic and fiscal challenges facing this province are huge. We can not ignore these realities even if we wanted to do so. From the beginning of the election process until today experts have continually reminded us of the world's and New Brunswick's dire financial pictures. Those realities will limit the options available as we make education and adult care decisions for our citizens with extreme disability challenges.  But even if that is so we owe them a duty we owe all citizens, a duty we owe ourselves ... to speak honestly and to look at the evidence, to look realistically about how those decisions actually impact on persons with complex needs.

We must abandon feel good philosophy and rhetoric. We must speak honestly about what we will do, or will not do,  for our youth and adults with complex needs ... with severe disabilities.  

Monday, December 06, 2010

"Robbie's Home!" Missing Teenager With Low Functioning Autism Found Safe in Toronto



Robert Capovilla, right, is reunited with his family Sunday night, a day after the autistic teenager went missing, prompting a huge police search. Aunt Margaret Saracino and father Adriano Capovilla reach for Robert on his return home.
RICK MADONIK/TORONTO STAR

The Toronto Star reports an autism story of danger and family fear that ends on a happy note with the safe return of  Robert Capovilla:


"The shy 16-year-old, diagnosed with autism and whose mental capacity is more like that of a child of 8 or 9, had been missing for more than 24 hours. In the biting cold.


Robert wandered away from his Mississauga home around 2 p.m. Saturday — a highly uncharacteristic move, says his mother, Maria. He had last been spotted at a McDonald's on Dundas St. W."


The Star reports that a large scale effort including public notices and searches by friends, family and police had been under way. The Toronto teen had left his Mississauga home and had made it all the way to downtown Toronto before being spotted by a Toronto Transit employee.  

Many parents with low functioning or severely autistic children have experienced the fear of their child going missing, including me.  As we  know from the sad story of James Delorey who was lost in a Nova Scotia snow storm and didn't recover from the effects it does not always end well.  In Toronto today Robbie is home, he is safe and healthy.  His family, as seen in the Toronto Star photo above, is very happy.  Many parents, particularly many parents of autistic children who have lived through a similar experience, will share their joy.

Sunday, December 05, 2010

Autism Brain Scan Tests or Just High Functioning Autism Brain Scan Tests?

MSNBC has an article by Amanda Chan on the recent "autism" brain scans Brain scan 'best thing so far' for detecting autism. The article  cautions that the fMRI tests used in a recent study have to be run many times and achieve similar results before the test can be put to clinical  use. The article also does point out that the "autism" subjects in the test were all persons with high functioning autism.  Notwithstanding the cautions expressed the article still  refers to the test results in terms of detecting autism with substantial accuracy  not just high functioning autism.  Given the large numbers of persons with Autistic Disorder who have intellectual disabilities  references to high functioning autistic persons as being representative of autism generally are inaccurate and potentially misleading.

In Study: More Hope for a Brain Scan for Autism Meredith Melnick of TIME also reports on the recent brain scan studies and the same pattern emerges. The use of high functioning autistic subjects only is noted and cautions expressed about the need for more tests.  But once again the article indicates that the study results were able to detect "autism" in a large,  93%, of cases. There is even a reference in the article to "the autistic brain" when describing the results of a recent London MRI study which found that "the test was able to identify the autistic brain with about 90% accuracy."

Influential media sources like MSNBC and TIME are creating a popular view of "autism" as being represented by "high functioning autism".  They are doing so based on a string of research studies which use high functioning autistic subjects and exclude those with low functioning autism. The cautions expressed in such articles are likely to be forgotten as more and more studies of high functioning autistic subjects publish their reports and the excitement builds that a reliable brain scan test has arrived.

Autism disorders are neurological disorders.  Whether and to what extent various genetic and environmental considerations come in to play are matters of great contention. But to my knowledge no one except a few ignorant, cynical comics dispute that autism disorders are neurologically based.  Brain scans do in fact appear to be promising as tests that could distinguish "autism" neurology from others and thereby provide a reliable biologically based diagnostic tool. But only if study participants from all points on the autism spectrum are considered.

Unless low functioning and intellectually disabled subjects are included in the studies used to develop autism brain scan tests such tests could only in honesty be used to detect high functioning autism and could not rule out low functioning autism in any given case.

We should not lose sight of these fundamental truths when developing "autism" brain scan tests.

Autism and Personality: Conor Likes Variety




There are many generalizations made about the personalities of persons with Autism Disorders.  Some are based on solid research and direct observation ... some appear to be based on what would make a good story.  My son Conor, who has an Autistic Disorder diagnosis, assessed with profound developmental delays, is inclined to fixate on things like his favorite song ... the Canadian National Anthem.  But even though he will play our anthem endlessly on our computers Conor also likes to listen to different versions of the anthem includng playing it in French, one of Canada's two official languages, and in Spanish. 
When we go shopping for groceries he often picks out peppers which he loves.  He also likes to pick out the "rainbow" packs of peppers with one green, one red, one yellow or orange.  Yesterday I was in a store with Conor picking up a few odds and ends when he suddenly walked briskly towards the other end of the store where he picked up a package of  chocolate Voortman wafers.  He then picked up a package of strawberry and vanilla Voortman wafers.  After we got home Conor wasted no time having some wafers .. one chocolate, one strawberry and one vanilla.
I bought all three packs. They will not go to waste.  And Conor had been great during our shopping.  As the strern Dad who lays down the law and is not, like his mother, wrapped around Conor's little finger (just kidding) I wanted to give him a treat.  I also wanted to reward his independence. Sometimes in the stores he can be a bit clingy but when he saw the wafers .... boom ... he was gone.
There is no great autism generalization painted by this story.  It is just Conor who is autistic and who likes variety in his music, in his foods, and in his socks (he often likes to wear one white and one black sock). One of his great strengths through the years has been his ability to transition smoothly from one therapist and teacher aide to another.  His preference for variety may be a part of that strength. Only he knows for sure.