Wretches and Jabberers Review "Disabled Doesn't Meant Dumb" - Is It OK For Higher Functioning Persons with Autism to Mock Intellectually Disabled?

"Disabled Doesn't Mean Dumb" is the title of an Associated Press (John Curran) review of "Wretches and Jabberers" published online in the Washington Times. W and J is said to be a documentary by Tracy Thresher and Larry Bissonnette, 2 non verbal persons with autism who have been able to communicate via augmentative technologies including equipment which converts typed messages into voice communication.  The two were presumed to lack intelligence because of their inability, prior to the introduction of the augmentative technology, to communicate. Now they are sought after as speakers and field questions about autism including autism and intelligence:

"For 10 years, Mr. Thresher and his friend Larry Bissonnette, 53, have been advocates for people with autism and the disabled community at large. They are about to get a new platform for spreading their can-do message: They are the focus of “Wretches and Jabberers,” a documentary film opening in 40 cities that makes the point that “disabled” doesn’t mean “dumb.”"

The message seems to be a positive one for the most part in that they are using their life stories, and humor, to let the world know that some non verbal people with autism may be quite intelligent.   The substance of the  review though suggests that the documentary will  also assist those who wish to pretend, contrary to several credible professional reviews,  that intellectual disability is not related to Autistic Disorder as it is currently defined.  The Intellectual Disability characterizing 80% of persons with Autistic Disorder is just another autism "coincidence". The article title is not necessarily theirs but it does seem to reflect the implicit message of the documentary, as reviewed,   that it is OK to mock those with intellectual disabilities.

As World Autism Awareness Day approaches the Intellectual Disability of the vast majority (as described  by CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp  ) of those with Autistic Disorder will again be pushed further and further out of sight.   After all Thresher and Bissonnette are "not dumb" and therefore all non verbal persons with autism disorders are "not dumb" ... not Intellectually Disabled.  

Wretches and Jabberers Review "Disabled Doesn't Meant Dumb" - Is It OK For Higher Functioning Persons with Autism to Mock Intellectually Disabled?

Will The Intellectual Disability Elephant In The Autism Room Be Mentioned On World Autism Awareness Day?

From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range.

(Catherine Rice et al., Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors, Disability and Health Journal, Volume 3, Issue 3, Pages 202-212 (July 2010)

The above range refers to the entire range of Autism Spectrum Disorders including Aspergers whch, by definition, excludes anyone with an intellectual disability. If you exclude Aspergers from the calculation then you are looking at a figure similar to the 80% figure referenced for non-Aspergers autism referenced in the 2006 Canadian Senate brief of the Canadian Psychological Association.  Yet we continue to ignore intellectual disability in our public discussion of autism.  Intellectual Disability is very much the elephant in the autism room.

One aspect of autism awareness events that puzzles me about autism awareness events is the extent to which they don't really raise awareness about the realities of autism disorders.  In many cases there will be no mention of the fact that autism disorders are exactly that ... disorders ... diagnostic categories listed in the Diagnostic and Statistical Manual of Mental Health Disorders of the American Psychiatric Association.  As the father of  a son with Autistic Disorder and "profound developmental delays" .... intellectual disability .... I have long been annoyed by the persistent attempts to hide under euphemisms like "profound developmental delay" and under blurred professional terms like "co-morbidity" the obvious fact that Autistic Disorder is actually a form of intellectual disability.  I am not just talking about IQ test scores although I am not a member of  the trendy IQ scores don''t count crowd.  Serious functional impairment in daily life is a real characteristic of Autistic Disorder. 

With news that the DSM5 would formally combine Aspergers with Autistic Disorder and PDD-NOS into the New Autism Spectrum Disorder the media rushed to report that some with Aspergers were concerned about being lumped together with the "other" autism categories, the categories which included those with Intellectual Disabilities.  No discussion of, absolutely no discussion, occurred, outside of this humble blog, about the possible negative  impact on the many with Autistic Disorder and Intellectual Disability of having the Intellectual Disability aspect of autism hidden further from public view.

Don't hold your breath while you search for information about Intellectual Disability and Autism on World Autism Awaerness Day.  On World Autism Awareness Day you are unlikely to find any mention of this important aspect of autism reality.  Unless you check this blog, Facing Autism in New Brunswick.  

Will The Intellectual Disability Elephant In The Autism Room Be Mentioned On World Autism Awareness Day?

Time for a REAL National Autism Strategy! Time for Medicare for Autism NOW!

Autism is rising. Autism has been rising for the past decade.  Since my son's autism diagnosis 13 years ago the numbers, as recognized by the CDC in the United States, have changed from  approximately 1 in 500 to 1 in 110.  It is long past time that Canada had a REAL National Autism Strategy, one which recognized the need to deal with autism seriously, across Canada, and stop using it as just another political football.  Autism disorders are exactly that, they are neurological disorders listed in the Diagnostic and Statistical Manual of the American Psychiatric Association. Autism disorders restrict the lives of many who suffer from them. Some autistic Canadians, on the high functioning end of the spectrum, need little or no assistance and can function well in any capacity from postal worker to researcher but many need a REAL national autism strategy and this election is the time to start serious efforts to provide one.

It is time that evidence based effective interventions for autism disorders, soon to be combined under the designation Autistic Disorder in the DSM5,  be specifically covered under our national medicare scheme. Canadian children with autism should not be disadvantaged by the particular province or territory in which their parents reside.  Canadians should not be forced to choose which province to live in based on which province offers the best treatment services for their autistic children.  In THIS federal election it is time to move forward with our thinking and specifically and expressly provide funding aimed at provision of autism treatment services in every corner of Canada.  If you are a concerned parent, family member or friend of an autistic child raise the issue of Medicare for Autism with your federal election candidates. 

The numbers of autistic adults are growing in Canada and a real national autism strategy must also address the need for appropriate, decent residential care for many of them. Our national attention has very appropriately been focused more and more on the need to provide accommodation for our elderly population. It is time to pay attention to the nearly 1% of Canadians with autism disorders and those of them that will require residential care and treatment. 

 

Speak up now for Medicare for Autism in Canada.  Speak up now for a REAL Canadian national autism strategy.

Take action.  Do it now. In this 2011 Canadian federal election.

Time for a REAL National Autism Strategy! Time for Medicare for Autism NOW!

A Place for Conor: Karissa Donkin of the Aquinian Examines Adult Autism Resources, or Lack Thereof, in New Brunswick

Karissa Donkin, a St. Thomas University journalism student, has produced an excellent article on adult autism services in New Brunswick.  The article includes an interview with me and reports on a meeting Ms Donkin had with me and Conor at the Second Cup outlet in Kings Place, Fredericton, New Brunswick. Her article presents both the joy of Conor and the challenges his Autistic Disorder presents as Conor approaches adulthood.  

Apart from our meeting Ms Donkin obtained information from New Brunswick's prominent autism expert Paul McDonnell, Ph.D, clinical psychologist and professor emeritus (psychology) about the need for autism services.  He comments in the article about the gap in residential care services for autistic adults in New Brunswick.

Ms Donkin's article completes the picture with some significant commentary by Department of Social Development spokesman Mark Barbour:

"There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired. 

These individuals require services and supports designed to specifically meet their high care needs.

The province wants to build an autism residential facility which would provide permanent care for severely autistic adults who can't live on their own, Barbour said."

The comments from Mr. Barbour come as a pleasant surprise to me.  I have been involved in several meetings with representatives of government departments including Social Development over the years.  While they have always listened respectfully, and asked relevant questions, they have never really indicated an intention to take any serious action, in the form of an adult autism residential facility, to address the gap in adult autism residential care in New Brunswick.  Congratulations, and thank you, to Ms Donkin for her excellent journalism in reporting this information.

I hope the province is serious about their intentions to build a permanent care adult autism facility. I hope their intentions are not sabotaged by the austerity era in which we are now enmeshed or by the failed rhetoric of the community cliche movement which assures us, contrary to all facts, that the group home system will take care of all autistic adult needs.

I also hope that politics does not enter into the location of such a facility if it is in fact established.  Fredericton is  a central location,  is where New Brunswick's autism service delivery model was born, and is where resources such as the the University of New Brunswick psychology department, UNB-CEL Autism Intervention training program and the Stan Cassidy pediatric autism tertiary care team are located,  all of which have been crucial to New Brunswick becoming a recognized model for autism service delivery. The expertise available in Fredericton will be vital to providing the training and expertise needed for an adult autism residential care facility.  The Fredericton environment is also less urbanized than Moncton or Saint John and provides ample opportunities for everyone, including autistic persons and their family members, to enjoy a natural outdoor lifestyle.

Regardless, I thank Karissa Donkin, and the Aquinian,  for some excellent, informative journalism on a subject which is very close to my heart.

A Place for Conor: Karissa Donkin of the Aquinian Examines Adult Autism Resources, or Lack Thereof, in New Brunswick

Have Higgs and Harding Sacrificed New Brunswick Students with Autism?

Have Minister Blaine Higgs and CUPE Local 2745 President Sandy Harding 

Sacrificed New Brunswick Students with Autism?

It appears that the first New Brunswickers asked to sacrifice, or to be sacrificed, in the austerity era formally ushered in yesterday with the Budget Speech by Finance Minister Blaine Higgs may be New Brunswick students with autism disorders. Unnoticed by important news sources like the CBC the government announced the day before the budget speech the ratification of a new collective agreement with CUPE Local 2745.  The new collective agreement is not yet available publicly but it has been indicated to me that the agreement will give the edge to seniority over qualifications, experience, special circumstances  or special relationships between teacher aides who will now be called education assistants and students with autism disorders.

What this means, if correct,  is that when the school year starts education assistants will be assigned to posted job positions solely on the basis of seniority.  An education assistant who has received the UNB-CEL Autism Intervention Training program will lose the opportunity to work with and help a student with autism if an education assistant who has been working longer as an aide applies for the position.  Autism is a neurological disorder which requires special learning approaches and understanding of complex and at times challenging behavior.  But, if the information proves correct, it appears that Finance and Human Resources Minister Blaine Higgs and CUPE Local 2745 President Sandy Harding have other adult interests more important to consider and are willing to sacrifice the best interests of New Brunswick students with autism disorders.

As a lawyer my work has focused on labour law and labour relations for a quarter century, both federally and provincially and included time as a legal adviser to the Canada Labour Relations Board, now called the Canada Industrial Relations Board.  Most collective agreements strike a balance between seniority and qualifications  by assigning a standard of qualifications and position specific ability to be met before seniority kicks in. Others assign the position to the most qualified person for a position with seniority acting as a tie breaker where candidates are equally qualified.  Very few agreements simply give a position to the person with the most seniority regardless of qualifications or ability as the new CUPE 2745 is rumored to do.

The NB government web site provides little details about the new CUPE 2745 collective agreement except the financial bottom line:

We are pleased that this agreement has come together and is supported by CUPE's membership," said Finance Minister Blaine Higgs, who is also minister of human resources. "It is clear that New Brunswick has severe fiscal challenges and it is encouraging to see a willingness from both sides to work together to reach agreements that are fair to both employees and taxpayers."

The agreement provides two years of zero-per-cent wage increases, followed by general economic increases of two per cent in each of the following two years. As well, the contract increases the guaranteed hours of work for teachers' assistants to 30 hours per week by September 2012. Government and union representatives will officially sign the new collective agreement in the near future.

I recognize that my sources could be wrong.  The union members who voted to ratify, or accept the new collective agreement were apparently not even given a draft copy of the agreement before voting on it.  Basically they were given, at least in some locations, a summary on a screen. The collective agreement should ultimately be made public and available on line.  

The information is unlikely to be proven wrong though.  CUPE Local 2745 President Sandy Harding  has long advocated for seniority to be the only consideration in assigning teacher aides, now education assistants, to positions working with children with disabilities including  students with autism.  She has long put the interests of adults, the most senior members of CUPE Local 2745, over the interests of students with autism disorders.  

If this collective agreement grants Local 2745 President Harding her long held wish to promote seniority over the interests of students with autism then it would explain why  she  pushed a collective agreement with such little financial gain for her Local 2745 members. It  has no wage increase for two years and more importantly, an increase in the  maximum hours an education assistant can work to 30 hours a week, one hour short of the 31 weekly hours required to qualify for the full-time defined benefit pension plan.

I hope my sources are wrong.  I hope I am wrong. I would be very happy to issue a correction, and an apology, to Finance and Human Resources Minister Higgs and CUPE Local 2745 President Harding if I am wrong.  I hope that the new CUPE Local 2745 collective agreement with the Province of New Brunswick does not make seniority the only, or the dominant, consideration in determining who works with New Brunswick students with autism disorders and other challenging disabilities.  The UNB-CEL Autism Trained  Teacher Assistants have been vitally important to ensuring that autistic children, including my son, receive a real education and develop to the best of their abilities. To effectively eliminate their contributions in the name of seniority will hurt the development of many of New Brunswick's autistic students.

For now though it appears that Finance Minister Higgs and CUPE Local 2745 President Sandy Harding have sacrificed New Brunswick children with autism in order to meet their adult, organizational goals.  It appears that the first New Brunswickers thrown off  the life boats as our government negotiates stormy fiscal waters will be the vulnerable ... students with autism disorders and other serious disabilities. 

Have Higgs and Harding Sacrificed New Brunswick Students with Autism?

Blame Game: Health Officials Blame Their Vaccine Program Failures on Autism Concerned Parents

The past 2 years have seen an onslaught of attacks on anyone who raises any questions about vaccine safety and in particular against anyone who suggests that vaccines might be implicated in causing or triggering autism disorders in some children.  Dr. Paul Offit has been the New York Times go to guy in promoting vaccine programs for almost a decade. His crusade to prevent discussion of possible autism vaccine connections was kick started with his New York Times Op-Ed "contribution" in March 2008 criticizing the results of the Hannah Poling case. 

With that opinion Dr. Offit expanded his unquestioned status as a vaccine expert to include his self appointed/self anointed status as an autism expert AND as a legal expert. The Offit Offensive began in full force in January 2009 with the New York Times' ceaseless coverage of  Offit's False Prophets and his drive to shut down discussion of vaccine safety issues.  The criticism of those who raise autism and safety issues has intensified with the ceaseless attacks on Dr. Andrew Wakefield and the unproven fraud allegation of the  BMJ (after the fact admitter of conflicts) and its adoptee  Brian Deer.

The result of the Offit Offensive? After years of attacking vaccine questioners public health authorities continue to see declines in vaccination rates and continue to blame those who question vaccine safety particularly those who are concerned about possible vaccine autism connections.  In just the most recent example in the news Minnesota doctors and health authorities are again tying declining measles vaccination rates and increased measles outbreaks to "erroneous" allegations of vaccine autism connections. 

As the parent of fully vaccinated sons I have never blamed vaccines for my younger son's autistic disorder and profound developmental delays.  I myself receive vaccines when I think them necessary or when advised by my family doctor. I believe vaccines to be important public health tools but like all of man's inventions I do not believe that they are  flawless.  Vaccines have caused injury in the past.  That is fact and it is reasonable for people to ask questions about the safety of vaccines.  The anecdotal evidence of vaccine autism connections, even acknowledging the weakness of anecdotal evidence, can not be ignored unless and until strong studies are done to convince parents that what they believe they have seen is not what really caused their children to lapse into a serious neurological disordered condition.  Failure to persuade the public is the failure of the health authorities and the persuasion strategies they have adopted to promote vaccine safety.  Decline in public confidence in vaccines is the failure of the health authorities not the public they are trying to convince.

While portrayed as being a front line crusader for the safety of children by vaccination Dr. Paul Offit is not in fact on the front lines.  It is parents who are on the front  lines fighting for their children's well being and health day in an day out. Calling them ignorant or irrational won't win their hearts and minds.  Blaming them for the decline in vaccination rates in some areas will not win the day for vaccine programs. Solid, credible studies free of pharmaceutical company influence by credible, trusted research authorities will. 

Blame Game: Health Officials Blame Their Vaccine Program Failures on Autism Concerned Parents

Autism Disorders, Wandering, Vigilance

Another controversy has arisen in the autism "community"; this time over the issue of  wandering by autistic children.  Reports of autistic children wandering, sometimes with tragic results, appear in the media with some regularity.  In the US consideration is being given to including wandering behavior as part of an autism diagnostic code. This, apparently, has sparked a heated reaction from high functioning members of a self advocacy organization.

At the conclusion of this comment I have posted an Autism Speaks release on the issue of wandering by autistic children including the request to sign a petition in support of the proposed diagnostic code and for more research on the behaviors of wandering autistic children.  I agree with the Autism Speaks release.  Immediately following is a comment I initially posted on Facing Autism in New Brunswick on September 9, 2006 on the subject of wandering autistic children and my own personal experience the day Conor left our home without being noticed.  

Saturday, September 09, 2006

Vigilance, Constant Vigilance

A recent tragedy in Toronto has revived some terrifying memories for me. A 12 year old autistic boy fell to his death from the 16th floor of a Toronto high rise in early May while under the supervision of a caregiver who resided at that location and who has now been charged with criminal negligence causing death. The case has prompted calls from the Autism Society Canada for national standards for caregivers working with autistic persons.

I know from personal experience the challenges of caring for autistic children and the need for constant vigilance. Three years ago I was home alone on a Saturday with my then seven year old profoundly autistic son when I took a business call on my phone. I had gotten into the habit of taking such calls while listening for my son's whereabouts. This time I got too involved in the call.

When I hung up I could not find my son. I ran frantically around the house and the yard before calling 911. I was informed that he was safe at the nearby Ultramar. He had attempted to cross a busy neighborhood street oblivious to the dangers posed by traffic. A good Samaritan had stopped and helped him into the Ultramar from where I picked him up. The man was still there, waiting to ensure my son was safe, when I arrived but at that point he turned and left without waiting for recognition, reward, or expressions of gratitude.

In my entire life I had never felt such fear, guilt, relief and gratitude. The impact of these intense feelings in one short span of time was difficult to absorb. I can literally still feel them now as I type, three years later. The lessons learned will never be forgotten.

As a lawyer I would not pre-judge the caregiver in the Toronto case - or the outcome of that case. As a parent who has "been there" I know that it is all too easy, unless we want our autistic children to live imprisoned in "safe" environments, for the unthinkable to occur. There is no training that can absolutely guarantee our childrens' safety. But, to improve the odds and reduce the incidents of tragedy, there should be minimum national training standards for those who provide care for autistic persons - parents included.

...........................................................................................................................................................

AUTISM SPEAKS SUPPORTS NEW DIAGNOSTIC CODE TO PROTECT INDIVIDUALS WITH AUTISM WHO HAVE A HISTORY OF WANDERING AND ELOPEMENT

Asks autism community to sign a petition and calls on HHS Secretary Kathleen Sebelius for more research and methods of prevention to address wandering behavior that can lead to serious accidents

NEW YORK, N.Y. (March 17, 2011) With increasing frequency, parents of children with autism spectrum disorder (ASD) report the terrible consequences that can occur when their children wander or unexpectedly run away. One mother described the recent death of her child who had wandered away from her home, despite efforts to lock doors and windows. Recognizing the seriousness and urgency of this problem, Autism Speaks, the world’s largest autism science and advocacy organization, vigorously supports the proposed ICM-9-CM diagnostic code and asks the autism community to sign the petition found at http://www.change.org/naa. In addition, Autism Speaks has joined the Interagency Autism Coordinating Committee in the call for action for Health and Human Services (HHS) Secretary Kathleen Sebelius to study the causes of wandering and elopement behavior, and to develop ways of preventing its occurrence.

“Many people with ASD are unaware of the dangers associated with traffic or other unsafe conditions. When a child with autism unexpectedly wanders from the home, parents greatest concern is that their child might be harmed or die as a consequence,” explained Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “We need to understand how to prevent wandering and how to quickly and effectively respond when a child is lost after wandering from the home or school. These measures could save children’s lives.”

There is little to no formal data collection on autism-specific wandering/elopement. So it is unknown how frequently it occurs, in what environments it occurs, how many deaths or injuries can be attributed to wandering/elopement incidents, why the incidents may have taken place, or what strategies may be most effective to prevent wandering- or elopement-related injuries and fatalities.

In addition to supporting this coding for ASD wandering, Autism Speaks calls on the Department of HHS to:

· Collect data on ASD-related wandering/elopement behavior

· Explore and research the potential need for and utility of an alert system similar to the AMBER alert or Silver alert, but tailored to the specific needs and characteristics of children under the age of 18 with autism who wander/elope, to help families and communities rapidly locate children with autism who have wandered/eloped

· Develop and test programs to prevent wandering/elopement incidents

· Work with the Department of Education to research and develop best practice models related to parental notification of any wandering or fleeing incidents in schools

“The issue of wandering/elopement is critical to many families and must be addressed in a manner that protects health and safety for individuals who wander,” concluded Dr. Dawson. “We need to better understand the scale of the problem of wandering and develop ways of preventing it. At the same time, we need to respect the essential freedom for independence in daily life for people in the autism community. This balance between protecting people with ASD while respecting their rights is achievable.”

The Interactive Autism Network will be launching the first ever major survey on wandering in the coming weeks. All survey participants must enroll at www.ianresearch.org.

About Autism

Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Autism Disorders, Wandering, Vigilance

Science Has Debunked ANY Vaccine Autism Connection? What Margaret Dunkle Said About Autism, Vaccines and the Hannah Poling Case

Margaret Dunkle is not, as far as I know, the target of an "investigation" by the BMJ or its investigative journalist Brian Deer. She is not a movie actress with an autistic child. She is Hannah Poling's great aunt and ...... she is a senior research scientist at the health policy department at George Washington University. On March 18, 2008 she wrote a very concise, and well informed, article about the Poling Case, Autism, Vaccines and Early Intervention – the Hannah Poling Case. The following is an extract from the article summarizing what happened. It is an honest description of what actually happened in the Poling case:

"What Happened in Federal Vaccine Court?

The case of Hannah Poling is important because it is considered by many to be the first time the federal government has conceded a connection between autism and vaccines. On March 6, 2008 the Office of Special Masters reported that, on November 19, 2007, the U.S. Secretary of Health and Human Services [the Respondent in this case] recommended an award of compensation to Hannah Poling. The Special Master also reported that the Respondent [the Secretary of HHS] stated that, based on a review of the petition filed by Hannah Poling and her attorney, medical records and affidavits:

“…the facts of this case meet the statutory criteria for demonstrating that the vaccinations Hannah received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism and manifested as a regressive encephalopathy with features of autism spectrum disorder.”

Since autism is defined by symptoms, there is for practical purposes no difference between having the “features of autism spectrum disorder” and having “autism.” In fact, Hannah Poling has a DSM-IV diagnosis of autism.

The Special Master’s March 6 Order goes on to say that, on February 21, 2008, after reviewing an expert report by Dr. Andrew Zimmerman, the Secretary of HHS [Respondent] stated that: “Having reviewed this additional evidence, [medical personnel at the Division of Vaccine Injury Compensation, Department of Health and Human Services (DVIC)] now recommends compensation for Hannah’s seizure disorder as sequela of her vaccine-injury….”

The Order of the Special Master also says that, based on the recommendation of the Secretary of HHS [Respondent] for compensation to Hannah Poling, “a damages determination is now appropriate.”"

The next time an uninformed talking head at one of the major media outlets follows the Offit script and says that "science" has "debunked" any connection between vaccines and autism ... take it with a grain of salt.

Science Has Debunked ANY Vaccine Autism Connection? What Margaret Dunkle Said About Autism, Vaccines and the Hannah Poling Case

FOCUS: Autism Speaks Research Focuses on Brain Pathways and Possible Medicines

When I read the headline New Hope in Autism Fight, an article in the Wall Street Journal by reporter Melanie Grayce West, my first thought was Yeah Sure, Another Ill informed Feel Good Autism Puff Piece in the Mainstream Media.  My first response was wrong.  The article was brief and to the point and provided direct quotes from someone who knows what she is talking about when it comes to autism disorders, Dr. Geraldine Dawson. It set out succinctly  the very clear, and important, focus of Autism Speaks funded research ... research aimed at developing new methods of autism diagnosis and treatment. The comments  provide a rational and informed basis for the optimism expressed in the title. 

The article began by reporting another large contribution to Autism Speaks by Summer Redstone and outlined briefly some of his other generous contributions to medicine and health care. It included  a no nonsense realistic description by Dr. Dawson of autism disorders and the challenges they present to those who suffer from them.  Not a whiff of  feel good "autism is beautiful" stuff. It indicated  point blank that autism is increasing without any of the usual attempts to obscure the increase that often accompany reports of new increases in autism rates. What I found most interesting though was the concise and clear description of the focus of Autism Speaks research:

The core of the current research conducted by Autism Speaks focuses on translating the basic biology that researchers have learned about autism into new methods of diagnosis or treatment. The science suggests that even though autism has many different genetic and environmental causes, their effects may converge on a set of common pathways in the brain.

"For the first time we have the possibility of developing medicines that could help to restore the function of these pathways," says Dr. Dawson. Ultimately these medicines would help to reduce the core symptoms of autism.

In the next few years, the biggest challenge to researchers will be to develop medicines that would be useful for the broader, general population of people with autism.

"We are actually very hopeful at this point that we will be able to conduct clinical trials with people with autism in the upcoming few years," says Dr. Dawson. "That's never been done. We've never really been as hopeful as we are now."


I hope that Autism Speaks does not abandon any of its contributions to researching the causes of autism, particularly to the woefully underfunded environmental causes of autism, but I am very pleased with the efforts to find new treatments.  The goals of exploring the biological basis of autism disorders, the common pathways in the brain implicated in autism disorders, and Dr. Dawson's expression of optimism that medicines aimed at restoring the functions of those pathways will be developed in the upcoming years is clear, sensible and ... focused.  It is that focus which is so important and which I had begun to think was missing in Autism Speaks' activities.

Many parents hope for the development of treatments, of medicines, which will help their autistic loved ones but many of us grow skeptical, if not outright cynical, after seeing so many false starts and so much spin and hoopla over very little.  Dr. Dawson has stated that she and Autism Speaks are actually very hopeful for development of new medicines that will actually help the general population of persons with autism disorders and explained why they feel that way.  I believe she is speaking honestly and is in a position to know what she is talking about.

I am, once again, optimistic about Autism Speaks and the future of autism research.

FOCUS: Autism Speaks Research Focuses on Brain Pathways and Possible Medicines

Washington Post Breaks Taboo and Reports Honestly on Autism and Aggression

The Washington Post reports on aggression and autism in an article curiously titled In Va. assault case, anxious parents recognize 'dark side of autism'.  I call it curious because many parents of autistic children have dealt for many years with the impulsive aggression that can accompany autism. It is in fact the big mainstream media that has been reluctant to talk about this negative autism reality. The glorification of autism disorders plays out constantly in the mainstream media which focuses on autism feats or the "self" advocacy of  a few very high functioning autistic persons.  The WP deserves credit for reporting this story straight up and for offering some parent perspective of this harsher reality of autism disorders in its coverage of the assault trial of a young with Aspergers:

The cause of autism - a complex developmental disability that affects a person's ability to communicate and interact with others - remains the subject of heated debate. What's not in dispute is the soaring number of children found to have the disorder. In 1985, autism had been diagnosed in one out of 2,500 people in the United States; now the rate is one in 110.

Champion said parents are just beginning to acknowledge what she calls the "dark side of autism," their children's capacity for aggression when they are frustrated, angry or overstimulated. Her son recently hit his attendant and attacked his father in front of a movie theater. Other parents describe scary episodes of biting, kicking and hitting.

It's not easy to talk about children lashing out, Champion said. But it's necessary because many are getting older and bigger and yearn for more independence, which leads to private struggles becoming public.

During Latson's three-day trial, no one disputed that he assaulted a Stafford deputy one morning in May. The deputy was bleeding so profusely that responding officers thought he had been shot.

But why Latson - who has Asperger's syndrome, a relatively mild form of autism - did it and whether he could have stopped himself played a central role in his defense and has engaged the sympathy of parents in the Washington region and beyond."

When my 6 foot, 15 year old son with Autistic Disorder and profound developmental delays has a difficult time he will lash out ...  at himself.  In a recent mid night incident he could not stop hitting his face and head.  I tried, unsuccessfully to stop him by using words, distraction and diversion.  When I felt it necessary to grab his harms to stop him from hitting himself Conor lunged forward biting my arm.  Such actions are rare for Conor and I have no doubt that he did not wish to harm me. There is also no doubt that his actions are a feature of his Autistic Disorder a mental health disorder.  Those who pretend otherwise are denying reality. 

I believe that refusing to acknowledge these harsher realities of autism disorders does a disservice to all those who suffer from them.

Washington Post Breaks Taboo and Reports Honestly on Autism and Aggression

What Does the Alleged Autism Science Foundation Mean by the Expression Self Identified Individual with Autism?

The Autism Science Foundation has appeared, during its brief existence, to be nothing more than an undisguised element of the Offit Offensive aimed at discouraging open discussion of, and any research aimed at, possible vaccine autism links. For appearances sake the ASF does involve itself somewhat in other autism issues. But if the "science" in the Autism Science Foundation title means anything, whether it be research or the overwrought opinions of celebrities  which can be used to encourage the belief that vaccines never cause neurological damage or any other type of  harm or "adverse event" it is primarily directed at promoting vaccine programs. The Autism Science Foundation has no identifiable autism expertise to boast about.  It is difficult given its brief history, and primary mission of protecting vaccine programs, to know what they meant by "self identified individual with autism" as that statement was used in its recent all caps headline screaming post titled AUTISM SCIENCE FOUNDATION ANNOUNCES IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS.

 In the list of travel grant recipients some were identified as parents, some by their occupation.  Two recipients were designated as self identified individuals with autism:

Mark Fornefeld—Self Identified Individual with Autism
Molly McGrath—Self Identified Individual with Autism/MIT Media Lab

The expression could mean that the two individuals named are persons with real autism disorder diagnoses who have identified themselves publicly as being autistic.  Or it could refer to individuals who do not have actual autism diagnoses but who have identified themselves as being autistic.  Such a practice does exist in some advocacy organizations which accept a person with a self identified autism diagnosis as constituting a person with autism.  ASAN, the organization with  a corporate board comprised of  very high functioning persons with autism and Aspergers does accept self identified or self diagnosed persons as actually having autism as stated on its web site:

About AutismAutism is a neurological variation that occurs in about 1 in 150 people and is classified as a developmental disability. Although it may be more common than previously thought, it is not a new condition and exists in all parts of the world, in both children and adults of all ages. The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have an official diagnosis on the autism spectrum (see Diagnosing Autism) or who self-identify with the Autistic community. While all Autistics are as unique as any other human beings, they share some characteristics typical of autism in common.

If the Autism Science Foundation is referring to persons with self diagnoses of autism  when it refers to individuals self identified with autism it should make it clear in their press releases.  The ASF should, with its purported support for autism science,  also make it clear whether autism research projects they fund include  as subjects self diagnosed or self identified individuals with autism. 

What Does the Alleged Autism Science Foundation Mean by the Expression Self Identified Individual with Autism?

A REAL Canadian National Autism Strategy Under A Harper Government?

As I have twice indicated on this blog I was pleased to be invited to attend the Autism Speaks Canada national autism strategy discussion in Banff, Alberta.  Although unable to attend in person I did participate via teleconference and offered my two cents worth on some of the important issues which should be addressed in any national health care strategy.  I participated, however, knowing full well that under a Stephen Harper government no REAL National Autism Strategy would be permitted.  Stephen Harper has been an opponent  of Canada's public health care system long before becoming Prime Minister of Canada.  His views are the views of the current version of the federal Conservative Party and no exception will made to ensure a strong federal government effort to address Canada's Autism Crisis.

This week has seen questionable action taken by the Harper government to have a National Health Act review conducted ..... not by the elected House of Commons where the last such review was conducted and where the Harper Party is in a  minority .... but in the unelected Senate where the Harper Conservatives hold a majority. The move, as detailed by the National Union of Public and General Employees, is  part of an ongoing campaign to diminish and possibly destroy any federal government role in funding of health care in Canada.  Organizations which call for a stronger federal government role in health care have already been told they will not be permitted to appear at the Senate review:

"NUPGE President James Clancy criticized the Harper government for sending a review of the 2004 Health Accord to the unelected Senate rather than allowing elected Members of Parliament to conduct public hearings.


Ottawa (11 Mar. 2011) - The National Union of Pubilc and General Employees (NUPGE) is criticizing the Harper governments decision to have the unelected Senate conduct the second mandatory review of the 2004 Health Accord (for more on Health Accord and federal transfers click here).


The previous review was conducted in 2008 by the House of Commons Standing Committee on Health. This moves the review outside of the elected House of Commons, where the Harper government is in a minority, to an unelected Senate committee where the Conservatives are now in a majority.


"What does this government want to hide from the public in this action," asks NUPGE President James Clancy. "Why won't the prime minister allow elected Members of Parliament to review his record on health care?"


Clancy pointed out that the move sends a bad signal about the future of public health care and Canada's democracy.


"This is one more example of the prime minister's anti-democratic nature. He sees the House of commons as a nuisance to be shoved aside. He'll do anything to bypass the democratic process," said Clancy.


The unelected Senators clearly hope to get the review done as quickly as possible. Hearings have already started in the Senate Committee on Science, Technology and Social Affairs.


A number of organizations that are calling for the federal government to play a stronger role in health care have been told they will not be allowed to appear and give testimony.


"The message for Canadians is clear: The Harper government not only holds Parliament in contempt, it also seems to view Canadians who strongly support public health care with contempt as well,” said Michael McBane, National Coordinator of the Canadian Health Coalition.


In the build-up for negotiations for the renewal of the Health Accord in 2014, some members of the Harper government have started to hint about making cuts to health care transfers. One prominent caucus member, Maxime Bernier, has publicly called for a termination of all federal health care transfers."

The opposition by the governing federal Conservatives to a federal role in health care bodes ill for a real, successful National Autism Strategy. Such a strategy requires non-partisan political support in order to succeed.  An example of non-partisan support for autism strategy exists here in New Brunswick.  Our province  has been recognized as a leader in the provision of autism services as set out in the following letter from the web site of the Association for Science in Autism Treatment's David Celiberti:.

ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services


Saturday, October 23, 2010


I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.


There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.


And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.


It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.


Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.


David Celiberti, Ph.D., BCBA-D, President
Association for Science in Autism Treatment

Although much work remains to be done here in New Brunswick much has been accomplished. There are many reasons why this small relatively poor province has achieved some good results.  A strong parent advocacy movement has been critically important along with  the involvement of well informed, conscientious professionals.  At the end of the day though programs have been put in place by government and therein is one of the important elements in New Brunswick's autism success to date.  Our provincial autism strategy has been a non-partisan effort with both governing parties contributing significantly.

New Brunswick's dominant political parties, the Liberals and the Conservatives, have both been actively involved in improving autism services.  Many of our autism services began during the Conservative government of Premier Bernard Lord. They were improved upon during the Liberal government of Premier Shawn Graham.  Autism in New Brunswick was taken seriously by both of our governing parties over the last 10 years.

Federally however only the NDP and the Liberal party have shown an inclination to move toward a REAL National Autism Strategy.  The sovereignist Bloc Quebecois will not accept any federal role in setting national health care priorities. They are joined by the  Conservatives, currently our governing party, who are fundamentally opposed to our national medicare system.  I wish it were not so but the ideological opposition of the Harper Conservatives towards our national health care system  leaves absolutely no room  for a REAL National Autism Strategy.

A REAL Canadian National Autism Strategy Under A Harper Government?

Hot Van Death of Intellectually Disabled Man with Autism: Caregiver Sentenced to Prison

Composite photo from the Philadelphia Inquirer, philly.com

The composite photo above is from the Philadephia Inquirer online article  Caregiver in death sent to prison which reports that caregiver Stacey Strauss was sentenced to two to five years in state prison, six months short of the maximum, after pleading guilty to a misdemeanor charge of involuntary manslaughter in the death of Bryan Nevins who she left in a hot van unattended where he literally baked to death.  Strauss is pictured in the bottom left hand corner and Bryan Nevins is in the top right. 

The sentencing judge was not impressed with the lack of remorse shown by Strauss.  The details of the death as reported straight up by the Philadelphia Inquirer are horrifying to this father of a severely autistic 15 year old boy:

On July 24, one of the hottest days of the summer, Strauss had left 20-year-old Bryan Nevins in a closed van at Woods Services in Middletown, where Nevins lived and Strauss worked as a residential counselor. He was found more than five hours later, dead of hyperthermia.

The tragedy happened after Strauss and a coworker had returned from a trip to nearby Sesame Place. Nevins, who functioned at the level of a 2-year-old, was unable to get out of the van on his own.

Competing for Strauss' attention was the apparent allure of her cell phone.

Records showed that she talked on the phone for more than three hours of her eight-hour shift, and made or received 71 text messages, all in violation of Woods Services regulations. Among the calls was a 44-minute chat with her boyfriend during the time Nevins is believed to have died inside the van.

"During that phone call, if the defendant had gone to Bryan, his life would have been saved," Deputy District Attorney Robert James told Cepparulo.

Instead, James said, "Bryan literally baked in that vehicle while she was on the cell phone with her boyfriend."

My 15 year old son has autistic disorder with profound developmental delays, he is severely autistic.  This story makes my stomach turn.  It scares the hell out of me to think that someone like Stacey Strauss could be left with the life and death responsibility of caring for someone like my son.  I am happy that she is going to a state prison.  But institutions and facilities everywhere in the US, Canada and elsewhere must be subjected to greater surveillance and review to ensure that what happened to Bryan Nevins does not happen to anyone else.

Hot Van Death of Intellectually Disabled Man with Autism: Caregiver Sentenced to Prison

My Autism Speaks Canada Autism Advocacy Experience - We Still Need A REAL National Autism Strategy

I did not, as I had previously hoped, attend in Banff Alberta for the Autism Speaks National Autism Strategy discussions which were taking place during the NeuroDevNet and Autism Research Training (ART) Program first Biennial ART-NeuroDevNet Winter Institute March 2-6. Circumstances, including limited flight options out of Fredericton, did not permit me to attend in person.  I did participate, by teleconference, in the 2 hour National Autism Strategy/Advocacy program sponsored by Autism Speaks Canada.  I do not know what Autism Speaks Canada will take away from the input it received.  These are some of my thoughts, some of what I took away from the discussions.

First, I commend Suzanne Lanthier of Autism Speaks Canada for her impeccable courtesy and professionalism both in organizing the event and in moderating the discussion group.  It is easy to see why Autism Speaks  has engaged Suzanne as their primary representative in Canada.  She is very focused and informed. Autism Speaks Canada itself though  has not been a player in the drive for a National Autism Strategy which has taken place over the past 10 years. Autism Speaks Canada does not speak for the parent advocates in various provinces including here in New Brunswick who have fought for provincial services and for a National Autism Strategy. Any effort by Autism Speaks Canada to form a National Autism Strategy must be consistent with the efforts made by parents who have long fought for such a strategy. Otherwise there will be several boats rowing in different directions, not one boat with all rowing together in one direction, as the hope was expressed during the discussions.

Second, I was also impressed with Mike Lake, an Alberta MP and father of a 15 year old child with an autism disorder.  Mike Lake and I are diametrically opposed on issues of National Autism Strategy but he did take 2 hours from an undoubtedly hectic schedule to participate in the Conference.  He was impeccably polite and articulate and made his argument very well. 

Essentially though Mike Lake's argument  is the argument of Stephen Harper and the current version of the Conservative Party of Canada which says that autism falls within provincial jurisdiction and it is the provincial governments which must implement policy with respect to autism issues in health, education and social development. As a lawyer I understand the Harper/Lake argument but the historical fact is that Canada has not limited itself to the  hard confines of strict jurisdictional walls.  Cooperative federalism has existed for many years to permit federal efforts to address issues that  take on a national scope.  The National Health Care Act itself is a prime example of cooperative federalism.  The National Health Care Act would not exist at all using the Harper/Lake logic. In Canada our federal government has stood back and watched as more and more autistic children are diagnosed with autism disorders with current, reliable US, figures estimating 1 in 110.  Cooperative federalism is required in the form of national legislation to authorize the federal government to provide funding for necessary evidence based treatments and services and to ensure that the funding is used for that purpose in each province.

Across  Canada there are inconsistent and varied early intervention programs in place to help autistic children.  Apart from New Brunswick it is not clear that any other province has integrated autistic children into neighborhood schools in accommodated learning environments within the schools and with autism trained teacher aides and resource teachers when appropriate.  Our autistic children are also becoming adults and for those with severe, classic autistic disorder  who are low functioning and intellectually disabled there is a crying need for decent residential care and treatment. If our national government refuses to get involved many autistic Canadians will be denied a decent life.  They will have been abandoned in the name of frigid, hard constitutional rigidity.  

If Canada is to have a  real national autism strategy it must consist of more than surveys and internet information sites. It must be one which ensures that all Canadian autistic children and adults have access to evidence based treatment and education.  A real national autism strategy will be one which commits the federal government, through Federal legislation,  to work directly with the provinces to ensure that all autistic Canadians have access to evidence based treatment and education and to decent residential care and treatment.    A national autism strategy which does not focus on these goals will not help Canadian children and adults with autism disorders.  If a national autism strategy is not focused on achieving such goals it is a sham, a mockery of the desperate needs of many autistic Canadians and their families.

My Autism Speaks Canada Autism Advocacy Experience - We Still Need A REAL National Autism Strategy

Indian Autism Experts Promote Television Causes Autism Myth

Conor relaxes and watches some television with the Host of Jeopardy .... Alex Trebek .... and  Mom and Dad .... in motel room during a visit to grandparents in Nova Scotia.  Conor was diagnosed with autism 13 years ago at the age of 2.  The symptoms that prompted us to seek medical attention which ultimately led to an early diagnosis for Conor appeared long before he ever watched television. 

India has contributed much to humanity over the centuries and is growing today as a world economic powerhouse.  Unfortunately it also appears now to be pushing as fact the myth that television causes autism disorders.  The Times of India quotes several autism "experts" and reports their opinions that television causes autism in 1 in 60 kids suffer from autism spectrum disorders: Experts:

"CHENNAI: Watching television for hours and not interacting with parents or other family members is pushing more children into the bandwidth of autism, say experts. From one in 1,000 children two decades ago, one in 60 children are now showing symptoms of Autism Spectrum Disorders (ASD), such as poor social interaction and bad communication skills, said consultant paediatrician at the Sundaram Medical Foundation Dr Shanthi Raj.

Experts say that while autism itself is biological, the other disorders in the autism spectrum, such as bad communication and social interaction skills, can be because of changing lifestyles and rapid advancement in technology. "Autism spectrum disorders and features are caused by environmental factors like being a single child, having no one to interact with, watching TV endlessly and not playing with children," said Shanthi Raj. The difference between autism and ASD is the severity of the symptoms.

With more children being left alone or in the care of maids, they end up watching television where communication is only one way, leading to ASD symptoms. "Children today are exposed to too much stimulation, too much information and such instrumental-based stimulation in the form of TV or computer and video games can be harmful," said Shanthi Raj.

Treatment of ASD involves inducing behavioural changes by changing the environment. Experts ask parents to constantly communicate with their children, encourage peer group interaction, and cut down on TV. The Indian Academy of Paediatricians recommends that children below the age of three should not be allowed to watch television."


The Times of India report does not provide any studies or journal discussions in support of the views of the Indian autism experts.  Hopefully credible American authorities who have contributed much to our understanding of autism here in Canada over the last decade and a half can reach out to autism experts in India and prevent another autism myth from growing in one of the great nations of the world. 

Indian Autism Experts Promote Television Causes Autism Myth

Autistic Disorder's Twin, Intellectual Disability, In The DSM5

I have posted several times about the high "co-morbidity" relationship between intellectual disability and autistic disorder (not autism spectrum disorder).  The Canadian Psychological Association 2006 Canadian Senate Brief indicated that 80% of persons with autism (exclusive of Aspergers) have an intellectual disability.  Two CDC surveys indicated that 44% and 41% of persons with an autism spectrum disorder have an intellectual disability. Since the autism spectrum includes Aspergers and persons who, by definition, do not have an intellectual disability the CPA and CDC figures appear to be fairly consistent.  With such a high number of persons with classic autism or autistic disorder having an intellectual disability it is shocking that very little is mentioned about the relationship between intellectual disability and classic autism.  The stigma associated with intellectual disability is so strong that the relationship is either ignored or outright disavowed. 

For those who are ashamed of the large intellectually disabled segment of the classic autism population no information about intellectual disability and its role in autism will be allowed to breach the walls protecting their romanticized view of autism.  For those who are more intellectually honest though I thought it would be helpful to post the DSM 5 definition of mental retardation which will now officially be called intellectual disability.

Autistic Disorder's Twin, Intellectual Disability, In The DSM5

Vaccine Autism War: Roy R. Grinker Ph. D. Omits Inconvenient Names in Book Review/Diatribe

Roy R. Grinker Ph. D. has published a review of Seth Mnookin's "The Panic Virus" in  The American Journal of Psychiatry in which he repeats the Mnookin's  blaming of the "democratization of science" and the public discussion of autism causation by celebrities and, of course, Dr. Andrew Wakefield, for compromising "herd immunity" resulting in the re-emergence of serious diseases.  In a review dripping with arrogance and condescension towards other, less educated, parents of children with autism disorders, Professor Grinker adopts Mnookin's opinions and  points out that Americans, particularly celebrities and parents, lack the intelligence to understand science and fall prey to ill informed bloggers and conspiracy theorists:

The typical reader does not necessarily understand how to discriminate between or evaluate the validity of different sources. For many Internet users, a blogger's opinion and a peer-reviewed scientific article may have equal weight. The Internet thus empowers conspiracy theorists as well as fringe researchers who carry out junk science and disseminate research results and interpretations favorable to the antivaccine movement.

...

Mnookin is particularly strong when describing the classic problem in science education: that science often moves methodically and produces results that are unacceptable to lay audiences in need of clear, simple answers. Indeed, the fear of vaccines continues to be fueled by scientists' inability to satisfy parents' concerns about the etiology of autism as well as by the incremental nature of science itself. As scientists conduct more research, they posit more hypotheses; each hypothesis introduces another level of uncertainty and raises another theoretical possibility. Scientists are trained to accept uncertainty, but the typical parent with an autistic child is not. In other words, the antivaccine advocates want something science will never be able to provide: expeditious and total proof, as opposed to the preponderance of the evidence, and single as opposed to multifactorial causes. Mnookin knows that the best science is rarely as convincing as the words of friends, neighbors, and anecdotes. The Panic Virus is a superb case study in the crisis of science in a democratic society.

Professor Grinker omits some names in his review of those who have expressed concerns about possible vaccine autism links or the need to conduct research to explore possible connections:

Dr. Bernadine Healy, Former Head of the NIH,  CBS Interview, May 12, 2008

"I think that the public health officials have been too quick to dismiss the hypothesis as irrational," Healy said.


"But public health officials have been saying they know, they've been implying to the public there's enough evidence and they know it's not causal," Attkisson said.


"I think you can't say that," Healy said. "You can't say that."


Healy goes on to say public health officials have intentionally avoided researching whether subsets of children are “susceptible” to vaccine side effects - afraid the answer will scare the public.


"You're saying that public health officials have turned their back on a viable area of research largely because they're afraid of what might be found?" Attkisson asked.


Healy said: "There is a completely expressed concern that they don't want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. "First of all," Healy said, "I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show."


As an example, Healy points to the existing vaccine court claims.


CBS News has learned the government has paid more than 1,300 brain injury claims in vaccine court since 1988, but is not studying those cases or tracking how many of them resulted in autism.


The branch of the government that handles vaccine court told CBS News: “Some children who have been compensated for vaccine injuries…may ultimately end up with autism or autistic symptoms, but we do not track cases on this basis.”


"What we’re seeing in the bulk of the population: vaccines are safe," said Healy. "But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?"

Dr. Jon Poling, Neurologist, Assistant Professor Medical College of Georgia,  Atlanta Journal Constitution, March 13, 2009

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

Geraldine Dawson, Ph.D., Autism Speaks chief science officer, November 11, 2009

IACC includes vaccine research objective in strategic plan for autism research

Autism Speaks is encouraged by new language recommending funding of vaccine research

NEW YORK, NY (November 11, 2009) – Autism Speaks is encouraged by yesterday's decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. "This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism," said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

The names and agencies listed above are simply ignored by anthropology professor Grinker in adopting the opinion that democratization of science, the internet, and  ignorant, stupid parents, misled by celebrities are responsible for  declines in immunization rates.

No mention is made by the "objective, scientific" professor about the fact that there have been many vaccine injury claims paid out by the US Vaccine Court or the reality that parents are in fact the first to see, and report,  what happens to their children after any event that is followed by a decline in their children's health and well being.

The Offit Offensive has cranked it up considerably with the Mnookin book, the BMJ/Brian Deer conviction of Dr. Wakefield and the big media interviews and articles denigrating anyone who questions vaccine safety. The Grinker Review is the latest cheap shot fired at questioning,  concerned parents. 

Whether this all out offensive results in increased immunization rates remains to be seen.  

Vaccine Autism War: Roy R. Grinker Ph. D. Omits Inconvenient Names in Book Review/Diatribe

Autism Disorders, Intellectual Disabilities and Institution Closings from Australia to Canada

Photo and caption from www.theage.com.au

 
It's all so simple.  Close the evil institutions.  Institutions evil.  "Community" good.

One flew over the cuckoo's nest?.  Burn down the cuckoo's nest.  Replace it with ... "community".  But what does "community" mean? 

Will the "community" provide an alternative residential facility which can  provide decent, secure living with any required treatment? Will family members of severely disabled persons with intellectual disabilities, autism disorders and other developmental disabilities be  confident in the community's  ability or willingness to provide a real, healthy and safe alternative for their loved ones residing in institutional care?.

In Australia the movement to close institutions continues as it does here in Canada but some caring  family members are fighting these ideologically driven closings.  In Relatives fight to keep centre for disabled open theage.com.au tells the story of Sandra and Noel Bates and their intellectually disabled 45 year old son Craig who resides in an institution scheduled for closure:

''The closure of institutions is ideologically driven,'' says Noel Bates, 77, president of the Colanda Parents and Friends Association. ''We're not pro institutions, we're pro better services for the disabled, including upgrading the facilities here. Colanda is 35 hectares of beautifully laid out parkland, a beautiful environment. It has newer facilities [than Kew Cottages had], better staff and processes.''

Mr Bates' son Craig, 45, suffers from Angelman's Syndrome and has, his father says, ''the intellect of an 18-month-old''. He suffers from seizures, cannot speak, or care for himself. He is unsteady on his feet and does not know his own strength when he reaches out to hug his mother, Sandra.

Although their doctors told the Bateses in 1966 to send their baby away and forget about him, they kept Craig at home until he was eight. After two years at Kew Cottages, he was admitted to Colanda the year it opened, 1976, and has lived there since.

''It was much, much better compared with what was available at Kew,'' says Mr Bates. ''It was an upmarket facility - it still is, for that matter.''

But despite Colanda's bucolic gardens, solid brick units and honourable reputation, many in the disability sector say it should be shut as soon as possible, and the residents integrated into the community, like the residents of Kew Cottages.

A 2008 report on Colanda for the Department of Human Services noted the relatives' satisfaction with the quality of care, but concluded that the routines of a large-scale institution restricted the residents' ''individual choices … and their quality of life''.

''They should close it yesterday,'' says Kevin Stone, executive office of the Victorian Advocacy League for Individuals with Disability.

''As far as I am concerned, it belongs in a previous age. The tragedy is that these are the people time forgot.''

The Colanda institution, where Craig Bates lives,  is targeted for closure even though family members are satisfied with the quality of life it provides their loved ones who live there.  The rhetoric of closure does not necessarily guarantee an alternative.  Family members of those who live within such facilities, people like Sandra and Noel Gates are motivated by concern for their family member not by rhetoric and ideology. They want to make sure that their son Craig has a decent place to live and that he will receive the care he needs. Community ideology and rhetoric does not provide the assurances they seek.

Here in New Brunswick, Canada I was one of a  group of community and government members who voted, unanimously,  at a meeting to discuss the future of an institutional facility in Campbellton New Brunswick, to keep the institution open.  I did not do so because I want my 15 year old son with autistic disorder and profound developmental delays to live out his days there after we could not provide his care.  I  voted to keep it open, as did the other representatives present, because there is currently no alternative for those severely affected by autism disorders, intellectual disabilities and other  disorders whose conditions do not permit them to live in our group homes.  "Community" cliches, rhetoric and ideology can help those who follow such scripts to feel good about themselves.  They don't provide real places for people with severe challenges to live and receive the care they need.

Close the institutions? Absolutely ... once  real and appropriate alternatives are available.

Autism Disorders, Intellectual Disabilities and Institution Closings from Australia to Canada

Autism and Poverty in Indonesia: Autistic Child Kept On a Leash

"I don’t think we are still living in a time when people could be put on a leash for a health or mental problem"

Kronjo village chief Rudi Mahfudin, Indonesia

Autism, particularly severe autism, presents huge challenges for families in Canada and the United States.  In some parts of the world though the situation is much more desperate.  In Poverty forces parents to keep autistic child on a leash The Jakarta Post reports about a 10 year old boy with severe autism behavior challenges whose family, living in poverty in Saga farming village, with no assistance from authorities, has been forced to keep the boy on a leash to prevent him from wandering off and to prevent him from acting aggressively towards others in their village:

“After his third birthday, Agus had tantrums and we often saw him talking to himself. He also frequently left home, sometimes not coming back for days,” he said. Fajar suspected that the tantrums may have had something to do with the death of their father, Haryono,Their mother Haderi, 45, was pregnant with Agus when Haryono passed away. The sudden death of Haryono may have had a deep psychological impact on Haderi. Fajar said his mother went into depression. 

After learning that Agus was suffering from autism, the family could only do little to find appropriate medical treatment for him, given their financial condition. So rather than having to search for Agus whenever he left home, the family decided to put a leash on him. “We have no choice. We are afraid that Agus could hurt others,” Fajar said. 

The family has tried to contact the local administration to seek help, but their calls have fallen on deaf ears, Soon after the death of Haryono, Haderui worked to support the family as a farm labor collecting unhusked rice left over from harvests in Tenjo Ayu, Serang. A local leader said that Agus was not the only one. Neighborhood unit head Tohir said that there are at least five autistic children who had not received aid from the authorities."

Autism and Poverty in Indonesia: Autistic Child Kept On a Leash