Saturday Morning Conor Fun

On Saturday mornings we usually walk to the SuperStore with Conor to pick up a few groceries. We get some exercise that way and we reduce our carbon footprint by leaving the car in the driveway. The best part though is having fun with Conor. Yesterday Conor did some running on the way to the store, first running away from Heather and then back towards her while she was taking some pictures. (My pontoon sneakers can be seen in the background in one pic).

At the Superstore Conor posed patiently with his new Toy Story 3 poster while Dad took a couple of pics. We drop by the Superstore bakery often. Conor likes the various movie decorations on the cakes. It really felt good when staff brought out a Toy Story 3 poster and gave it to Conor.

Autism Disorders and the DSM-5 Storm - Will Intellectual Disability Realities Be Thrown Overboard?

The DSM-5 storm currently raging amongst psychiatric professionals should not be too shocking to most parents of autistic children.  Autism parents are used to the wars that rage over vaccines and autism and  whether it is right to try and treat or cure our own children. In the complex and controversial world of autism discussions  referring to  the well established fact that the "vast majority" of those with Autistic Disorder diagnoses  also have Intellectual Disabilities will invite outrage.  Even referring to Autistic Disorder as a Disorder will provoke controversy.  Some of these controversies are reflected in professional discussions so we are used to seeing controversy in any mention of autism. While not shocking the latest roar in the DSM-5 storm, this time, again, by Dr. Allen Francis, does shed some light on one aspect of the DSM-5 process that has puzzled me ... the failure to post severity criteria for public consumption on the official DSM-5 site of the American Psychiatric Association even after the start of the clinical field trial phase has been announced.

Dr. Allen Francis has been a persistent and candid critic of the DSM-5 process questioning many conceptual issues pertaining to the diagnostic definition changes of some disorders and the addition of new disorders to the Diagnoatic and Statistical Manual of Mental Disorders of the American Psychiatric Association.  In his latest critique of the DSM-5 process, DSM 5 Field Trials--Missed Deadlines Have Troubling Consequences,  Dr. Francis critiques the sloppiness of the process including missed deadlines for completion of different phases in the process. Dr. Francis focuses on the field trail phase of the DSM revision process and states:


It was patently obvious from the moment of its announcements that the new DSM-5 field test timetable was also a product of fantasy that would not be met in the real world. First off, it should have been clear that the field trials could not possibly start on time 2 months after their announcement. Recruiting the sites, training the personnel, gaining human rights approvals, and pilot testing always take at least 6 months. Predictably, we are already in mid November 2010 and it is still not at all clear when the DSM-5 field tests will actually begin to enroll patients at all its sites.Then there is the design. Forget for the moment that it asks the wrong questions and will produce largely irrelevant answers. Forget that it is testing poorly written criteria sets that are in much too rough a form to be ready for testing. Again, our focus here is only on timetables and missed deadlines. The DSM-5 field trials are a masterpiece of cumbersome complexity-- an administrative nightmare. They were originally scheduled to last 9 months starting July 2010 and ending in March 2011. Instead, the project will probably not start in full force until December 2010 or January 2011 (or later). By my reckoning (based on the experience with the DSM-IV field trials), it will take at least a year to complete from the date of first patient entry. And this assumes a maximum possible efficiency that is not at all likely given all the past laggard DSM-5 performances.
...
Because we are reaching a point of no return, these accumulating delays spell future disaster for DSM-5. The future schedule provides little room for error or forgivingness. The DSM-5 publication date of May 2013 is fixed in stone --both because the new ICD-10-CM codes will become official in October 2013 and because the APA budget depends on DSM-5 publishing profits. But the work to be done is enormous, not really do-able in the remaining time allotted. The result will be a rushed and jumbled DSM-5 that will create huge problems for our field and for our patients.

Dr. Francis's comments do not instill confidence in the DSM-5 to this humble autism dad.  But they do reflect some of the concerns I have felt over the failure by the DSM-5 revision teams to post the severity criteria for the New Autism Spectrum Disorder which will combine Aspergers and PDD-NOS with the existing category of Autistic Disorder. The most important distinction between Autistic Disorder and Aspergers has always been the exclusion from Aspergers Disorder diagnosis of anyone with Intellectual Disability.  Credible authorities have indicated that as many as 75-80% of persons with Autistic Disorder also have intellectual disabilities.  This aspect of Autistic Disorder reality is rarely mentioned or taken into account by anyone  discussing autism including the major  mainstream media or even researchers who now routinely announce "autism" study results based exclusively on research participants with high functioning Autistic Disorder or Aspergers.

When the proposed combination of the various PDD categories into the existing Autistic Disorder  was made public he major mainstream media focused exclusively on the reaction of persons with Aspergers or well known parents of children with Aspergers like anthropologist  Roy Richard Grinker.  The fear of some with Aspergers of being grouped with Autistic Disorder was assuaged by the assurances of Grinker and others who have gushed about how autism no longer carries a stigma. What was being unsaid in such statements was that the fear of stigma was the stigma of being associated  with a category that included so many persons with Mental Retardation now referred to euphemistically as Intellectual Disability.

As the father of a son with Autistic Disorder and Intellectual Disability who is not ashamed to speak openly about the Intellectual Disability aspect of my son's condition my concern is the exact opposite of those who fear association with Intellectual Disability.  My concern is that the severely debilitating challenges facing those with currently defined Autistic Disorder and Intellectual Disability will be further obscured and hidden in  the New Autism Spectrum Disorder. During the DSM-IV era "autism" has become increasingly defined in the public mind, and more and more in the minds of professionals and researchers,  by very high functioning persons with no obvious deficits or challenges. Meanwhile public, media and researchers alike simply ignore those low functioning persons with Autistic Disorder particularly those with Intellectual Disabilities.

Concerned about the persistent attempt to disassociate Intellectual Disability from Autistic Disorder I have visited the official DSM-5 site several times to see if the severity criteria would at least refer to intellectual disabilities or cognitive challenges in the severity criteria category. Despite the site's message to check back frequently there is today still no posting of the severity criteria for the proposed New Autism Spectrum Disorder. Dr. Francis, the lead professional in the DSM revision process that led to the DSM-IV, is obviously  much, much better informed about the likely reasons for this delay than this humble parent.  If he says it is a matter of sloppy work by the current DSM-5 revision teams  than it probably is or at least it is a major factor.

I  have to wonder though whether the persistent stigmatization arising from association of autism with intellectual disability ... with mental retardation ... is also a major factor in the failure of the DSM-5 review team to post severity criteria for the New Autism Spectrum Disorder.  I remain concerned that the challenges facing those most severely affected by autism will continue to be obscured and ignored, even hidden,  by medical professionals and researchers.

If Dr. Allen Francis, captain of the DSM-IV, does not have confidence in the good ship DSM-5, then why should I, a mere passenger,  have confidence that the ship will  weather the storm and arrive at a safe harbor? And why should I have confidence that some of the ship's baggage, including the Intellectual Disability reality faced by the vast majority of persons with the currently defined Autistic Disorder, will not be thrown overboard before the DSM-5 arrives in port?

Autism and the NBEN Collaborative on Children's Environmental Health

I attended the New Brunswick Environmental Network meeting of the NB Collaborative on Children's Environmental Health November 16, 17 in Fredericton although I had to leave a bit early on the second day.  It was an impressive gathering of government, business and non-profit organizations focused on environmental health issues generally.  The highlight of the gathering for me was the participation of guest speaker  Maryse Bouchard, who has studied, and provided evidence, of the negative neuro-psychological impact of manganese found in drinking water supplies on children and adolescents.  Professor  Bouchard is an Adjunct Professor, CINBIOSE, UQAM and Researcher, CHU Sainte-Justine. She was the lead researcher of the team that released a study which showed that children exposed to high concentrations of manganese in drinking water performed worse on tests of intellectual functioning than children with lower exposures.

Although I attended this excellent meeting with the intention of just listening I did in fact mention in response to a question concerning autism that autism research funding  has been almost exclusively directed toward genetic autism research but that the emerging view is that autism results from the interaction of genetic and environmental factors.  I did mention vaccines and autism solely to state that it is the view of some distinguished health authorities that the epidemiological studies are not conclusive on the vaccine autism issues. 

When each participant was asked about successes they had experienced in their efforts I mentioned the institution in New Brunswick, as a result of parent advocacy, of government funded preschool autism intervention by properly trained staff, autism specific training of Teacher Aides and Resource Teachers and the accommodation in neighborhood schools of individual autistic children based on their challenges and needs.  I mentioned that some autistic children prosper in New Brunswick mainstream classrooms but that some, including my son at our request, do much better in individualized learning environments in neighborhood schools.

It was, overall, a very good conference. If I could point to one area for improvement for an environmental collaborative focusing on environmental health of children  it would be to focus more attention on the prenatal environment of the child.  The months before  birth constitute one of the most crucial development periods for any child and it is a period of vulnerability to substances crossing the placenta, from any source, including vaccines, epidurals and ultrasounds. The connection of preterm births and cesarean section deliveries on autism rates should  be explored more fully.  The  expecting mother's  uterus is the most important environment for any child's  development and environmental autism research  must include that environment.

New Ontario Brain Institute to Include Autism Treatment & Cure Research by Dr. Peter Szatmari

Ontario Premier Dalton McGuinty has announced the creation of an Ontario Brain Institute which will include autism disorder expert Dr. Peter Szatmari and a focus on finding biomedical treatments and cures for autism disorders.  Dr. Szatmari informed the Hamilton Spectator:

“I think it’s pretty exciting,” Szatmari said Tuesday. “It reflects the importance of a knowledge economy and the importance of biomedical research, particularly in science-research in the quality of life for the people of Ontario. To have a government recognize the importance of the brain in people’s everyday lives is fabulous.

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“Currently, we don’t have any biomedical treatments that can treat or even cure the disorder,” Szatmari said. “I’m hoping that with some of these genetic discoveries we can figure out what is going wrong in the brain so we can specifically target those pathways and cure the disorder.”

To even have an autism expert talking in a meaningful context is a huge step forward  in the battle to find cures for autism disorders.  Just recently the Mysterious "Dr. M" testified as an expert witness before a Canadian Human Rights Tribunal in one of Michelle Dawson's proceedings against Canada Post Corporation and informed the tribunal that the "notion" of curing autism is nonsense. To see real steps being taken toward finding treatements and cures for autism disorders, even to speak openly about the possibility of finding cures for autism disorders, is a long overdue but welcome development.

Adult Autism Reality: Where Do Severely Autistic Adults Live After Their Parents Die?

Where do severely autistic adults live after their parents die?

It is a question that gnaws at many parents with severely disabled children. At the same time  attempts to find answers to that question are often met with protest and even hostility by other parents who fear and loathe the very concept of institutional care.  That tension appears to be present in a Milton Georgia where city council zoning change to permit development of a facility to provide assisted living care for autistic adults faced what 11alive.com  described as "ardent" opposition:

"A city council meeting Monday night became the center of a hot-button debate about the treatment of those with autism.


The Milton City Council approved the rezoning of a chunk of Deerfield Parkway to become a transitional facility for adults with autism -- including a vocational school for students more than 18 years of age and an assisted living facility called Watercolors Transition with 72 studios.


But it didn't come without ardent opposition from advocates and parents in the autism community, who spoke out against the project.


"It is ripe for abuse and neglect," said Rita Young, Director of Public Policy and Education for AADD, "and for the behaviors to really escalate."


Several parents said they found the idea counter-productive, essentially encouraging those with autism to turn away from the rest of the society. One added, "I find it offensive."


But Rick Swanson, the architect of the facility that would be among the first of its kind nationally, says the research he's done -- including numerous interviews with those in the autism community -- has found massive support for the project, some of which came from supporters in Milton Monday evening."

I participated a couple of weeks ago in a public consultation process being held by the office of the Ombudsman/Youth Advocate here in New Brunswick.  The question of where my  severely autistic son will live when I can no longer care for him, and after I am dead, was on my mind while I  attended  as a parent of an autistic child who has been active in autism advocacy in New Brunswick for over a decade.  The consultation was intended to gather public input on a centre for youth with complex needs. When the current, and highly respected,  Ombudsman/Youth Advocate spoke he quickly informed those present that the recommendations made by his office would not include a recommendation for a  residential institution. OK fine but where do youth with complex needs live if not in an institution?

The fact is that, at least here in New Brunswick, some youth with complex needs can not because of their specific challenges live with family or in group homes where the expertise to provide proper residential care and assistance does not exist.

Group homes in New Brunswick often lack the trained staff and professional expertise to provide for the needs of young people with severe autism and other disabilities.  For several years we have wrung our hands in this province over the issues surrounding residential care for youths and adults with autism disorders. But we have not developed a viable set of alternatives for autistic youth and we have not responded at all with new adult autism  residential care and treatment facilities.

I have visited the institutional facilities at Centracare and Dalhousie Regional Psychiatric Hospital.  I do not want my son with severe Autistic Disorder to live in those institutions after I die or become incapable of caring for him.  But what alternative will he face, where will he live, when I am dead?  We currently have severely autistic adults, like my son, living in psychiatric hospitals in New Brunswick, or shipped out of the province, even out of the country, because we have no realistic living and care alternatives available for them.

Feel good buzz words and cliches like "inclusion|" and "community" will not provide the care my son and other severely autistic adults need in order to live a decent life after I am dead.  My son will require residential care in a facility which provides for his physical security and his ability to enjoy life; with staff that have appropriate autism intervention training and access to professional assistance. Outside of the psychiatric hospitals no such facilities exist here in New Brunswick.

Close the institutions?  Yes, absolutely.   But only after appropriate alternatives are available to provide for the residential care and treatment needs of youth and adults with severe Autistic Disorder and other serious disorders and disabilities.  Feel good buzz words do not provide those alternatives.

Irrational Neurodiversity Ideology Harms Children with Autism Disorders

The American Medical Association has a commentary titled  Can Parents of a Child with Autism Refuse Treatment for Him?  by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site,  in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier.  The doctor advised the parents of an opportunity for treatment  for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic.  Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether  child protection agencies should be contacted by a doctor confronted with such a situation:

"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed.

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care.

Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention.

Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency?

Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue.  A parent has no more right to refuse  available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders.

The parents in that clinical case commentary are responsible for what happens to their child and  they must  wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor.

Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and  the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism.  As applied to autism Neurodiversity is fundamentally irrational at its core.

Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis  called autism, embrace the  diagostic  label  "autism",  identify with "autism", and in the same breath    reject autism  as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with  mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental  disorder. 

When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair.   I was unsure whether to seek treatment for my son Conor or not.  I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie.  Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can".

I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation.   Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son.   She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment.
  
The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act.  Many will also be exposed to Neurodiversity ideology, not just through internet bloggers  but also through major media institutions that add a false air of legitimacy to this harmful ideology  pushed  by frequent big media interviews with very high functioning autistic persons who do not want to be cured.

Even the administration of US President Barack Obama has legitimized this harmful ideology by  promoting  a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured.  He promotes the idea that autism and Aspergers are social conditions not medical conditions.

Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. 

Autism disorders are exactly that medical disorders, mental disorders.  If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children.  If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children.

Do not subscribe to the Neurodiversity ideology.  Your child with an autism disorder will pay the price if you do.

CARD Study Is Latest Proving ABA Is the Gold Standard for Autism Treatment

Dr. Doreen Granpeesheh, executive director and founder of CARD, celebrates 

the study results  with Megan Howell, one of the participants who recovered

 from autism. (PRNewsFoto/Center for Autism and Related Disorders, Inc.)

Study results released by the Center for Autism and Related Disorders prove, once again, that ABA is the gold standard for autism treatment.   CARD, one of the best known, experienced and credible centers for autism intervention in the world states in its press release that the study:

"evaluated the effects of behavioral intervention for 14 young children with autism using a version of Applied Behavior Analysis (ABA) that blends structured teaching with play-based behavioral intervention. Today, 43 percent of the study's participants no longer display clinical symptoms of autism and most of the participants demonstrate significant improvements in functioning. 

In accordance with previous research, CARD found that many of the children made substantial gains in cognitive and adaptive functioning, as well as language skills. Most of the children also demonstrated significant improvements in executive functioning. After treatment, the average T-score for the group on the BRIEF, a measure of overall executive functioning, was 61, well below the cut-off for clinically significant impairment. In addition, 8 out of 14 children were functioning in the average range on the Vineland ABC, a measure of overall adaptive functioning, whereas only 2 of 14 were in the average range before treatment began.

CARD officials are not trying to overstate the results. They do not claim that the children are cured nor that they all can be said to be "indistinguishable from their peers":

Daniel Openden, the center's vice president and clinical services director, said the CARD results are the latest to prove ABA-based therapy is the gold standard for autism treatment. He sees autistic children make amazing progress, but he doesn't say they are cured or recovered.

"Recovery can mean different things to different people, so the key is to understand how recovery is defined," he said. "We see a range of outcomes in response to effective treatment, up to and including children who appear indistinguishable from their peers. But we're not comfortable saying that these children no longer have autism."

This study will have no persuasive effect on those who are ideologically opposed to ABA but for parents and others seeking help for their autistic children it is more evidence that they should give strong consideration to ABA as a treatment to help their children.

Autism in a Lab Dish? Call Me Unconvinced

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

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

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

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

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

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

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

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

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

Autistic Disorder Began Increasing Worldwide in 1988?

   

I have produced below the abstract for an article titled Timing of Increased Autistic Disorder Cumulative Incidence published online at Environmental Science and Technology. I added the bold emphasis to the statement that both genetic and environmental factors are implicated in its etiology. It is long past time that environmental autism, and autistic disorder,  research received more funding priority from public authorities which have favored genetic based autism research almost exclusively for decades with few significant results. Authors of the study are Michael E. McDonald and John F. Paul of the National Health and Environmental Effects Research Laboratory, U.S. Environmental Protection Agency, MD-B343-06, Research Triangle Park, North Carolina 2771.

It is interesting to note that cumulative increase was observed worldwide beginning in 1988 several years prior to the publication of the DSM-IV  in 1994 AND that the data relates to Autistic Disorder not the broader "autism spectrum" of disorders.

Environ. Sci. Technol., 2010, 44 (6), pp 2112–2118, DOI: 10.1021/es902057k, Publication Date (Web): February 16, 2010,Copyright © 2010 American Chemical Society

Autistic disorder (AD) is a severe neurodevelopmental disorder typically identified in early childhood. Both genetic and environmental factors are implicated in its etiology. The number of individuals identified as having autism has increased dramatically in recent years, but whether some proportion of this increase is real is unknown. If real, susceptible populations may have exposure to controllable exogenous stressors. Using literature AD data from long-term (10-year) studies, we determined cumulative incidence of AD for each cohort within each study. These data for each study were examined for a changepoint year in which the AD cumulative incidence first increased. We used data sets from Denmark, California, Japan, and a worldwide composite of studies. In the Danish, California, and worldwide data sets, we found that an increase in AD cumulative incidence began about 1988−1989. The Japanese study (1988−1996) had AD cumulative incidence increasing continuously, and no changepoint year could be calculated. Although the debate about the nature of increasing autism continues, the potential for this increase to be real and involve exogenous environmental stressors exists. The timing of an increase in autism incidence may help in screening for potential candidate environmental stressors.

It's Not Just Children with Autism - Stephen Harper Just Doesn't Care

Autism parent advocates have advocated for many years for a national autism strategy.  NDP and Liberal MP's and Senators including Peter Stoffer, Shawn Murphy, Andy Scott and  Jim Munson joined them in their efforts but no meaningful strategy has resulted in Parliament.  

Under Stephen Harper autism has been rejected as a concern by our federal government. A national autism symposium was cancelled and rescheduled after it became clear that serious autism advocates were slated to attend. The Harper government rescheduled  a sham national autism symposium to make sure that "local" representatives were put forth who would be  docile and not rock the boat by calling for federal funding across Canada of evidence based autism interventions.  

Medicare for Autism was not, and will not, happen under a Harper government.  Sure Mike Lake, a Conservative MP and father of a child with autism, will be happy to appear as a token autism parent/Conservative MP  at autism events to harvest PR for the Conservative Party but neither he, nor  Prime Minister Harper, will permit any serious discussion of a meaningful national autism strategy involving federal support of funding for evidence based autism intervention for all autistic Canadian children. Effective evidence based intervention for autistic Canadian children is just not up there with census forms in the Harper list of priorities

It comes as no surprise, given Harper's lack of concern about addressing Canada's national autism crisis,  that the same "not my problem", attitude of our PM is manifested in other non-action as seen in the following horror story from the Calgary Herald. A Canadian child visiting his stepfather in Oregon, who resided there for health reasons during the winter, was detained by state health authorities for riding a bike without a helmet.  He was in fact detained by the state for 2 years and placed in a succession of foster homes while his mother fought for his return to their home in Calgary.  Eventually he was returned and a lawsuit brought by the State of Oregon against his mother for child care expenses dropped after a group of lawyers stepped in to help.  The Canadian government under Stephen Harper remained on the sidelines as described in the Calgary Herald:

"No, the state of Oregon didn't prove -- it didn't even claim -- that Noah was neglected or abused by either his mother or stepfather, who unfortunately doesn't have the status of legal guardian to Noah.

But that didn't convince them to cave in to common sense for several months. In the end, it was most likely embarrassment that prompted their about-face, dropping the lawsuit citing an estimated $7,500 in costs for caring for Noah -- the story made headlines around the world, eventually catching the attention of TV news network CNN.

On Tuesday, both Kirkman and her lawyer, Daniel Mol, express thanks for others who have helped them in their cause, most notably lawyer Tony Merchant and The National Council for the Protection of Canadians Abroad -- who earlier stepped in to fill the void of a silent Harper government and filed an application under The Hague Convention in U.S. federal court, asking for the boy's return under international law.

But after the momentary joy over their victory, the most salient emotion they show is righteous anger.

"I never expected to be sued for the cost of them essentially kidnapping my son," says Kirkman outside court."

Harper and his autism dad spokesperson Mike Lake have said that because health care is within primary provincial constitutional jurisdiction it can take no action to implement a serious national autism strategy. That position ignores decades of cooperative efforts between federal and provincial governments to address important issues using all available Canadian resource regardless of strict constitutional categories.  What is interesting in the Kirkman  case is that the protection of Canadians in foreign countries, especially Canadian children, is a matter squarely within federal constitutional jurisdiction but Prime Minister Stephen Harper did nothing to protect a Canadian child abroad. 

Autism should be a non partisan issue.  Here in NB both Conservative Premier Bernard Lord and Liberal Premier Shawn Graham took steps to make NB a leader  in autism service delivery.  Federally though it is crystal clear that no serious national autism strategy will be developed as long as Stephen Harper is Prime Minister.

Let's face facts.  Our Prime Minister just doesn't care.  Period.

Former Premier Shawn Graham, A Strong Advocate for New Brunswick's Autistic Children, Expected to Resign Today

Shawn Graham & Andy Scott with autistic children and parents at the

autism intervention and community centres in Fredericton in 2007

Canada News Service reports that NB Liberal leader Shawn Graham will announce his resignation this morning.  As a father of a son with Autistic Disorder, and an autism advocate for over 10 years, I will regret his departure.  Shawn Graham while official leader of the opposition, and then as Premier of New Brunswick, helped New Brunswick become as stated by David Celiberti, president of the Association for Science in Autism Treatment, a leader in provision of autism services. Premier Lord had begun the early intervention program for delivery of evidence based autism treatment to NB preschoolers and had begun the training of teacher aides at the excellent UNB-CEL Autism Intervention Training program but Shawn Graham was active in pushing for these programs and in expanding them very significantly.  The people of NB said goodbye to him as Premier and today he is expected to leave.  

There are as yet no signs that Shawn Graham's commitment to evidence based intervention, treatment and education for autistic preschoolers and students in NB, in learning environments which accommodate their individual best interests,  will be carried on by  Premier Alward. To the contrary Premier Alward, and his cabinet ministers, are heavily influenced by the feel good philosophy of community living icon  Gordon Porter,  a member of Premier Alward's five man  transition advisory team, who has been openly hostile to autism representatives advocating modern evidence based approaches to educating autistic students.  Hopefully the gains made for autistic preschoolers and students during Shawn Graham's term as Premier will not be thrown away during the next four years.

Autism, Consultations and Conor Make for a Busy Weekend

This was a busy weekend for me. I participated in the Consultation on a Centre of Excellence for Children and Youth with Complex Needs Friday afternoon and evening and Saturday.  It was a privilege to be able to participate as a parent autism advocate. The consultation was organized by Bernard Richard, the Ombudsman/Child and Youth Advocate and an individual held in high regard by most people in New Brunswick. His stature is such that the recommendations of Mr Richard and his co-chair Shirley Smallwood a mother of child with autism and a long time advocate on autism and other issues together with the fact that  this process was  specifically requested by several Deputy Ministers means that the recommendations are likely to result in concrete  action being taken. 

I did not agree with everything said at the consultations but the process was good and there was a vigorous "discussion"of ideas and issues. Not surprisingly, my friends from New Brunswick's powerful community living organization did not agree with my perspective but the exchanges were both candid and courteous.  The co-chairs' advisory counsel comprised of  Dr. Simon Davidson, a child, adolescent and family psychiatrist at the Children's Hospital of Eastern Ontario (CHEO), Dr. Jacques Richard a psychology professor  and director of clinical training at the  Université de Moncton's and Dr. Tara Kennedy  a developmental pediatrician and clinical leader of pediatric autism rehabilitation services at the Stan Cassidy Centre for Rehabilitation in Fredericton gave excellent, well received,  presentations. 

One serious disappointment from my perspective was Mr. Richard's categorical statement, consistent with the community living corporation's influence in this and all other government processes involving special needs children and adults, that he would not be recommending any institutional placements or care.  As the father of a severely autistic son with intellectual disability I do not WANT my son to live in an institution at any time but I also know first hand the REALITY that there is currently NO ALTERNATIVE available in New Brunswick in terms of care for those most severely challenged by their disabilities. 

 

The feel good philosophy and buzz words of the quasi-governmental community living  corporation has worked wonders for those with less complex needs but has done little  to help the most severely challenged. I have been  to the psychiatric care facilities in Campbellton (where I received a full tour from the fine, caring and overworked professionals who operate the Restigouche hospital) and Centracare in Saint John, Although I do not want my son to end up living in these places I know that the group homes, and the so called "community",  do not take care of the most severely challenged. 

The proof of what I say is obvious. The proof is the residents living in the psychiatric facilities in NB and those who have been exported to Maine and other provinces for many years. The proof is the challenged youth who have been sent to a youth correctional facility in Miramichi because the "community" has failed them.  I will have other comments on the consultation process later, both positive and negative, but this obvious hijacking of the complex needs process by the community living corporation and its  feel good philosophy is most disturbing.  The consultations on youth with complex needs is in serious danger of failing to address the needs of those with the most complex and persistent challenges. The consultations are important and I am thankful to Mr. Richard for letting me participate even though I am an open and frequent critic of the failed community living philosophy in NB and even though I do not expect to have my concerns addressed.  It is better to have tried and failed than not to have tried at all.  

It  did take a day and a half of my time and it was important but I was away from family.  I made up for the missed time with Conor today.  Conor showed Dad  his new haircut from Saturday morning (thank you Angie at Clipper Blade in the York Plaza in Nashwaaksis).  We went for a nice walk along the St. John River and took a trip to the movies to see "Megamind".   As I have commented  before Conor hadn't been to a movie theatre in several years prior to this spring because of his inability to handle the stimulation and excitement. This spring though he made huge breakthroughs  going to the theatre (several times) to see Shrek, Tory Story 3, Despicable Me and now Megamind. His ability to handle the noise and visual stimulation of the theatre was outstanding again today.  His progress provided me with some optimism ... much more than I received at the consultations which appear to be destined to conclude with  buzz words and feel good cliches about community, hand wringing  and rhetoric over "institutions" ... but no alternative and no solutions for those most desperately in need of care and treatment ... life long care and treatment. 

 

 

 

Autism and Education: The Full Inclusion Mainstream Classroom For All Standard Discriminates Against Some Autistic Children

 

Extreme Full Inclusion Model of Education in Canada

 and New Brunswick has Discriminated Against

 Some Children With Autism Disorders

Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory, as was made clear by the Supreme Court of Canada in the Meiorin, Grismer, Law and Mercier decisions.

THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD

Presented by Yude M. Henteleff, C.M., Q.C.
to the
C.A.C.L. NATIONAL SUMMIT ON INCLUSIVE EDUCATION
OTTAWA, ONTARIO
NOVEMBER 24, 2004

The above document by Yude Hentelleff  QC should be mandatory reading for Educators and Human Rights Commission and Tribunal  members across Canada.  Unfortunately that does not appear to be the case particularly in New Brunswick where the extreme full mainstream classroom inclusion model has been pushed relentlessly by Gordon Porter, the New Brunswick Association for Community Living and senior officials in the Department of Education.  

Meanwhile some children, including some autistic children, for whom the mainstream classroom is not the right learning environment are forced into situations where they injure themselves, or others, in order to get out of an environment which is not the right option for them; an environment that overwhelms and harms therm.  My son, fortunately, has been accommodated in a separate learning environment for his primary ABA based instruction in our neighborhood schools with time spent in common areas of the school for other activities where he does get to interact with other students.  Conor was removed from the mainstream classroom, at our request, after he came home every day with bite marks on his hands and wrists.  He has been well accommodated by our schools and our school district. Other students for whom the mainstream classroom is not the right option have not always been so fortunate. 

Where Is the Evidence that Celebrity Autism Advocates are Causing Drop in Vaccination Rates?

Whenever information surfaces showing a drop in vaccination groups in any geographic area or social demographic group the media and public health authorities blame celebrity autism advocates for the drop. TIME magazine does exactly that in commenting on the National Committee for Quality Assurance (NCQA) Report indicating   that a drop in vaccination rates is occurring amongst children of wealthier parents while rates  actually increased amongst children of poorer parents.

TIME Magazine,  in an article titled Vaccination Rates Drop in Wealthier Kids: The Autism Rumors Take a Toll, stated:

Wealthier families, meantime, are getting too much of their health advice not from doctors and epidemiologists, but from talk shows, the blogosphere and the rumor mill, all of which are filled with vaccine scare stories. Making things worse is that the kind of folks spreading the tales are precisely the kind we find hardest to ignore.

"Very articulate, very good-looking movie stars or personalities ... are giving out information about how bad vaccines are," pediatrician Robert Frenck of the Cincinnati Children's Medical Center told the online health news service HealthDay. "Frumpy middle-aged doctors" find it awfully hard to compete with that.

   

The NCQA web site in a news releaase titled NCQA REPORT: QUALITY, SPENDING NOT LINKED; AUTISM FEARS SUSPECTED AS CHILDREN'S VACCINATIONS DECREASE IN PRIVATE PLANS states:

"Childhood vaccination rates in 2009 declined by almost four percentage points in commercial plans.

A possible cause of this drop is commercial plan parents may refuse vaccines for their children based on the unproven, but increasingly popular, notion that vaccines cause autism. Celebrity activists are outspoken advocates of this view. Interestingly, we see vaccination rates in Medicaid – the program serving the poor – continuing to steadily improve.

“The drop in childhood vaccinations is disturbing because parents are rejecting valuable treatment based on misinformation,” said NCQA President Margaret E. O’Kane. “All of us in health care need to work together to get better information to the public."

Neither  the TIME Magazine article, nor the NCQA news release, reference any studies which provide evidence that the drop in vaccination rates amongst children of wealthier parents is due entirely, or in part, to celebrity autism advocates and bloggers ....  good looking or not.

Insulting parents of autistic children (and celebrities) has not worked to restore confidence in parents that vaccines are safe generally or that they are NEVER involved in causing autism in ANY cases even amongst children of women injected with mercury containing vaccines while they were pregnant. I have commented previously (1) (2) on the insanity of continuing with this failed strategy while hoping for a different outcome yet the NCQA and TIME continue to do so.

Unlike the intellects at TIME and NCQA I will not assume that they will ever learn their lesson. I do not expect public health authorities, or TIME, to learn that maybe it is time to start treating the public with respect and make their case with solid, credible studies both as to the cause of drops in vaccination rates and on whether vaccines contribute to autism or any other disorders. Former NIH Director Dr. Bernadine Healey has stated that comparative studies comparing autism rates amongst vaccinated and existing unvaccinated populations should be done but no such study has been attempted. Instead excuses are offered by public health authorities who continue to dismiss, and attack, anyone who asks questions about the efficacy or the safety of vaccines.

There is no evidence that TIME or public health authorities will ever change their view of the public as ignorant, unwashed and incapable of understanding serious issues. It appears to be far easier for public health authorities to blame the public, or good looking high profile members of the public, than to convincingly demonstrate the safety and efficacy of vaccines.

Autism Epidemic Deniers Grasp at Wisconsin Straws

Both Kev at lbrb and the  former journalist who purports to offer evidence based autism sources to journalists at AutismNewsBeat have jumped on the new Wisconsin  study to push their non evidence based beliefs that autism is 100% genetic and that there are no environmental factors involved in causing autism. The study  does not appear to be, as described on  Milwaukee Magazine news buzz online a study to determine whether environmental factors were involved in causing autism. It appears simply to indicate that in some Milwaukee school districts autism cases with lower reported cases have caught up to other districts  and have now leveled off at the current CDC autism estimate rate of 1 in 110.

How that study means anything in the understanding of autism causes as opposed to education district practices in Wisconsin  is not explained clearly by Kev or ANB both of whom use the study to discount possible environmental triggers of autism generally.  

In discounting the existence of an autism epidemic and the existence of environmental causes of autism both the Neurodiversity ideologue Kev and the purportedly evidence based journalist ANB ignore the  testimony heard recently at the US Senate by several expert autism researchers and government officials including the following testimony of Issac N. Pessah Ph.D. Professor, Department of Molecular Biosciences, College of Veterinary Medicine, Director, UC Davis Children’s Center for Environmental Health and Disease Prevention University of California, Davis, Department of Molecular Biosciences :

"Although autism risk has strong heritability, no single locus alone appears to be sufficient to account for the full clinical phenotype. Results from many genomewide autism screens indicate that potential susceptibility genes are spread across the entire genome. Recently several very rare genetic mutations, single nucleotide polymorphisms (SNPs), de novo copy number variations, and epigenetic factors that influence DNA methylation were shown to contribute complexity in the transmission of autism risk. Yet genetics alone cannot account for the majority of autism cases currently being diagnosed. There is lack of full concordance between monozygotic twins, with some estimate ranging as low as 60%, and the prevalence of ASD among siblings has been reported as high as 14%. Interactions among multiple genes are likely to contribute to various types of autism, and heritable epigenetic factors and/or non-heritable environmental exposures are likely to significantly contribute to susceptibility and variable expression of autism and autism-related traits. It is therefore likely that constellations of epigenetic and environmental factors are contributing to the increasing prevalence of ASD, a rise that cannot be fully accounted for by changes in diagnostic criteria.


....


There is a critical need to identify environmental factors, including exposure to xenobiotic chemicals and changes in diet that contribute to autism risk and severity. The vast majority of public and private resources has, and continues, to support work on identifying genetic impairments associated with autism risk. From these studies we have learned that genetics alone cannot predict the majority of autism cases, the patterns of impairments, severity, nor can they predict success for current treatment modalities. Moreover, we have learned that many of the molecular and cellular systems that are associated with autism are the very same ones that are the target of environmental chemicals currently of concern to human health because of their widespread use.




We know that autism prevalence continues to increase dramatically clearly implicating environmental factors in autism risk. We must identify which environmental exposures and combination of exposures are contributing to increased overall risk in the population and identify the most susceptible groups. Only by bringing together the concerted effort of multidisciplinary teams of scientists can we identify which of the >80,000 commercially important chemicals currently in production promote developmental neurotoxicity consistent with the immunological and neurological impairments identified in individuals with idiopathic autism. It is clear that there is a critical need to identify which chemicals in the environment that influence the same biological pathways known to be affected in autism. Limiting exposure to these chemicals is the only way to mitigate or prevent autism in susceptible individuals.

Both Kev and AutismNewsBeat ignore serious evidence and analysis from expert government and academic researchers which point to environmental triggers of real increases in autism. Instead they grasp at a Wisconsin study which shows that some education districts in Wisconsin caught up to the other Wisconsin districts at the current 1 in 110 estimated prevalence level of autism disorders.  The study may well have implications for education practices in Wisconsin. It is difficult to see how it addresses the studies, evidence and analysis offered by government and academic autism experts in US Senate hearing clearly implicating environmental triggers of autism.  For reasons unknown both Kev and ANB WANT autism to be 100% genetic and they will continue, on the flimsiest grounds, to discount the role of environmental factors in causing autism disorders and in explaining the horrific rise in autism diagnoses over the past 12 years from 1 in 500 to 1 in 110.  

Kev and ANB continue to deny the evidence and expert opinion that autism is caused by the interaction of genetic and environmental factors. They will continue to deny that the increase in reported cases of autism disorders is real in whole or in part.  They will continue to grasp at straws wherever they can find them .... in Wisconsin or elsewhere.

Autism, Capitalism and the Autism "Self" Advocacy Industry

I don't usually find much of value in the various Neurodiversity commentaries on the internet. From Jim Sinclair to Ari Ne'eman it is always the same claim by some very high functioning person to speak on behalf of all persons with autism including those, like my son,  with actual Autistic Disorder diagnoses who are severely affected by their autism disorders. I commented yesterday in my post Autism is a Mental Disorder for Which Cures Should be Sought on the tendency by some self proclaimed autism representatives to  describe autism as everything but what it is .. a medical disorder ...  a mental disorder, a diagnostic category in the DSM and ICD.  Today I read a comment on a site  cripchick's blog  called Autism, Capitalism, and the Establishment which I found interesting even though I disagree with much of it. In that comment cripchick criticizes what she describes as an autism advocacy industry. She  places her criticisms of the alleged autism advocacy industry  in the context of what she describes as the Non-Profit Industrial Complex (NPIC):

Non-Profit Industrial Complex (NPIC) is a system where non-profit organizations become about making money and maintaining the status quo. A lot of people feel offended by the NPIC critique, but without this conversation we can’t really talk about the environment we are trying to create change in, the role institutions play in our work, or our vision for the world we want to live in.

This is what the INCITE! Women of Color Against Violence , an organization who has been doing a lot of work around the role of the NPIC, says about the NPIC:

The state uses non-profits to:
Monitor and control social justice movements;
Divert public monies into private hands through foundations;
Manage and control dissent in order to make the world safe for capitalism;
Redirect activist energies into career-based modes of organizing instead of mass-based organizing capable of actually transforming society;
Allow corporations to mask their exploitative and colonial work practices through “philanthropic” work;
Encourage social movements to model themselves after capitalist structures rather than to challenge them.

It has been a long time, maybe decades,  since I have stumbled upon such an anti-establishment critique.  Like most such commentaries it is often easy to mock and dismiss but there are some thought provoking elements in the critique. Essentially though she cripchick alleges that autism advocacy causes are  governed by self interest , eg. paid, sometimes government and industry subsidized,  charity directors and officers, and used by state and industry interests to prevent positive social change.

It would be interesting to apply cripchik's critique to the autism "self " advocacy industry and to those very high functioning professionals who have made careers, sold books and otherwise promoted their own very personal self interests by promoting themselves as "autistics" who do not want to be cured and who, although they have a medical diagnosis of autism or Aspergers, do not see themselves as having a medical disorder.  By pretending that autism disorders are not medical, mental or psyshiatric disorders does the autism "self" advocacy industry reduce pressure on government and industry to find the external or environmental causes of autism disorders. Does the autism "self" advocacy industry, with its anti-cure rhetoric take the pressure off of governments to find cures for a mental disorder which now affects 1 in 110 persons including 1 in 70 males?

cripchik doesn't take her radical critique that far though. She sticks to criticizing those parts of the autism advocacy industry that work towards, or purport to work towards, goals such as curing autism.  She provides no similar critique of the anti-cure autism "self advocacy" industry.  Her criticism, in the end, seems little more than another variation, a "natural" variation, of the same old autism self advocacy industry denials that autism disorders are in fact medical disorders.

Autism is a Mental Disorder for Which Cures Should be Sought

About DSM-5 

Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.

 American Psychiatric Association, DSM-5 Development, About DSM-5

Autism is, by definition, a mental disorder. Autism is, by definition a psychiatric disorder. 

These autism realities are often ignored in the attempt by some persons to claim that they speak on behalf of persons with autism.  These same persons, purporting to speak on behalf of all persons with autism disorders, claim that "THEY" do not want to be cured.

 

The politicking involved in maintaining the impossible position of speaking for all persons with a mental disorder is challenging even with the backing of the New York(er) magazine and the IACC. Flip flopping is  frequent with discussion focusing on autism as a socially imposed disability rather than a mental or psychiatric disorder. The same "autism spokespersons" who purport to speak on behalf of people with mental disorder diagnoses avoid like the plague any mention of autism as ...... a mental disorder.  Although they embrace the autism label, a diagnostic category in the DSM they make no mention of what it actually is ... a mental disorder.  

A social disability, a way of life, a culture, a different way of thinking, a different part of a neurodiverse existence. All of these things for sure but not a mental disorder.  And they want me to reject what I know about my son's Autistic Disorder, his mental disorder, based on 14 years of living with him, caring for him, loving him .....  in favor of the views of some adult diagnosed persons views who do not know my son and  who do not acknowledge the reality of their own diagnoses?

Today is a day on which some in the online autism world are shutting down social communication in an attempt to draw attention to communication deficits suffered by persons with autism. It is an interesting idea and I hope it creates some buzz even though I am not participating. 

I have long ago chosen to speak out about autism disorders and on this day I choose to go back to basics and point out a basic that is becoming more and more obscured ... autism is a mental disorder.  It is a mental disorder which imposes severe life restrictions on many who suffer from it and can not drive Land Rovers, operate successful businesses, play in rock bands, attend colleges for gifted youth or work as researchers with prominent high functioning autism experts. 

Autism is a mental disorder for which we must not stop trying to find treatments and cures to improve the lives of those who suffer from the disorder.