Conor at the Bucket Club

Conor had buckets of fun  yesterday at the Bucket Club on  an outing organized by the Nashwaaksis Middle School.  It was the perfect day to get out of the classroom with hot temperatures by our local standards.  We had no reluctance signing the permission slip for Conor to attend.  Brad, the exceptional  teacher assistant who has worked with Conor for most of his time at Middle School,  was with him and kindly agreed to take some pictures with my camera.  After surveying the landscape Conor dove right in and  played some mini-golf, played with the basket ball and the kid friendly, lower to the ground  basket ball hoops, climbed the towers to the tops of the taller slides and did lots of sliding and splashing in the water.  It was a great day for Conor.  Mom and Dad felt pretty good too when we saw the pictures of our very happy Conor.

Autism and Intellectual Disability, Two Disorders or One? The Genetic Link

The recent release of results from the major autism genome study made headlines around the world some of which inaccurately portrayed the study as demonstrating that autism is entirely genetic with no environmental triggers and, heaven forbid, no possible vaccine connections. While any knowledge is theoretically helpful the almost exclusive focus over the last two decades  on genetic autism research to the near exclusion of environmental autism research has probably slowed, if not prevented, our coming to fully understand what causes autism and what may help in curing autism.  The recent study does, according to some reviews, offer some hope of treatment down the road. There may also be some help for those persons with autism disorders and intellectual disability who suffer from being autistic and intellectually disabled and from the stigmatization that results, especially within the so called "autism community",  from being intellectual disabled. 

It is difficult to glorify autism as a different way of thinking, one which has allegedly blessed humanity with gifts  from Mozart to Einstein, while acknowledging that approximately 80% of persons with Autistic Disorder and at least 40% of all persons with Autism Spectrum Disorders also have intellectual disabilities.  While the mainstream media tends to ignore the realities of autism and intellectual disabilities in favor of the feel good "aren't they smart" stories there is outright shame and hostility felt by some in the so called autism community who do not want to be associated with, or have their "autism spectrum" children associated with intellectual disability. 

The shame and hostility felt by  some in the "autism community",  towards  intellectual disability  is blatant but  not discussed except from the perspective of high functioning persons with autism and Aspergers.  Interestingly enough the recent autism genome study may provide information which may help combat the prejudice against acknowledging the autism and intellectual disability connection.

Stephen Scherer one of the study authors, and director of the McLaughlin Center and the Center for Applied Genomics at The Hospital for Sick Children and the University of Toronto, and Andy Shih  vice president of scientific affairs at Autism Speaks, which helped fund the study. Shih served as key facilitator of the Autism Genome Project Consortium were interviewed about the Autism Genome Project study report for an article in  Bloomberg Businessweek . They made some interesting comments about autism and intellectual disability genetic connections:

"The researchers compared the genomes of nearly 1,000 people with autism spectrum disorder (ASD) and about 1,300 healthy controls.

On average, participants with ASD had 19 percent more CNVs than the controls. Most of the CNVs were inherited from parents while others appeared for the first time in the autistic individual.

"About 6 percent of these occur as new CNVs in autistic individuals but the vast majority are rare, inherited CNVs," Scherer explained.

"With autism, there's a higher likelihood of having CNV's in their genes, especially genes realted to intellectual disability," Shih stated. 

About 40 percent to 50 percent of kids with autism also have intellectual disabilities, Scherer pointed out.

There were also commonalities with other disorders, including schizophrenia, Shih said."

Scherer's reference to 40-50 percent of kids with autism having intellectual disabilities is a reference to kids on the autism spectrum of disorders.  Since none of the kids diagnosed with Aspergers would have intellectual disabilities by definition, and since PDD-NOS cases tend to be milder, that estimate is consistent with the 80% of persons with autism (excluding Aspergers) having intellectual disability figure approximated by the Canadian Psychological Association and is consistent with the vast majority label used by Dr. Yeargin-Allsop, autism expert with the CDC. Without  KWibbling over these approximate numbers and without going once more into any imaginary breaches this information clearly shows a genetic connection between autism and intellectual disability. 

To this humble father of a son with Autistic Disorder , who is not ashamed of his son's Intellectual Disability,  it appears that a common genetic basis implies that the conditions may in fact just  be part of one neurological disorder and are not in fact separate conditions at all.

Autism Awareness: Blaming Other Parents Won't Change Autism Realities

Kristina Chew is a mother of an autistic son and a well known and influential autism blogger whose views have been sought by prominent media institutions in the United States.  She has visited this site on occasion and left some kind words. Her writings about her own son are those of a mother who loves her son deeply. The pictures of her autistic son enjoying life with his parents are particularly moving.  When I see her son's pictures and read Ms Chew's comments about her Charlie it seems that in many ways he is very much like my son Conor.  

I have always disagreed though with Kristina Chew's  tendency to downplay the harsher realities of autism disorders. I am particularly saddened to see her recent writings about two incidents of parents taking the lives of their autistic children in which her point seems to be that we should not talk about the negative realities of autism disorders, we should emphasize the positive aspects of what are neurological disorders in order to prevent other parents from harming their autistic children. Ms Chew says that we should pretend that autism is a good thing to be embraced. We should ignore the fact that many with autistic disorder will live narrow restricted lives, many in residential care facilities, some in psychiatric hospitals.  We should ignore the basic fact that, as parents, we sought medical attention for our child before we knew he was autistic, because we knew something was seriously wrong with him. Before his diagnosis twelve years ago I did not know what autism was. Twelve years later I have a better understanding and I have no intention of embracing it.

I love my son and look forward to the time I spend with him.  I post many pictures on this blog site and on my Facebook page of Conor; the overwhelming majority of which are very positive.   But I do not lose sight of the realities of his autistic disorder.  I have done my humble best to improve my son's life and I have, along with other autism parents who refuse to wear rose colored glasses,  fought hard to help other autistic children obtain evidence based early intervention and education opportunities. I have also lobbied actively, admittedly without any success to date, for improvements to our province's residential care system for autistic adults. On this site I push hard for autism research which will be more oriented toward finding out what causes autism, finding cures and treatments.  I see no reason why my son should live forever with the deficits imposed by his neurological disorder if ways to help overcome those deficits can be found.

The fact is some people are overwhelmed by life and break down.  Some do horrible things and in some cases those persons do those things to their autistic children.  Some of the parents who commit these acts may have their own mental health issues independent of their child's autism. To suggest that other parents should stop talking about autism realities in order to prevent such tragedies is not based on evidence, logic or common sense.

The way to prevent such tragedies, to the extent they can be prevented,  is to  find help for the parents who need their own medical or psychiatric assistance, to speak honestly about the realities of autism disorders, to stop the almost exclusive focus on the genetic research obsession (it's gotta be genetic, Teresa Binstock, 1999) which has yielded nothing of value to help autistic children. The way to prevent such tragedies  is to conduct research to find the environmental triggers of autism, to find how autism works biologically, to find cures and treatments for autism disorders, to provide more and better early intervention, schooling and adult care.

The way to prevent such tragedies is to commit our selves as people, as parents, to helping our children overcome their neurological disorders.

I love my son and that is exactly why I will never put on the rose colored glasses and embrace his autistic disorder.

New Brunswick Drags Its Feet on Adult Autism Care

The decision this week by the New Brunswick Court of Appeal, reported in the Telegraph Journal,  dismissing a discrimination complaint against the Province of New Brunswick for essentially "banishing" a severely autistic New Brunswick man to the US (Maine) to obtain appropriate care covers a range of legal issues and emphasize again the challenges faced in advocating for provision of autism services in the court system.   The decision, New Brunswick Human Rights Commission v. Province of New Brunswick (Department of Social Development), 2010 NBCA 40 (CanLII), touches on a number of legal issues relevant to a legal analysis of discrimination complaints and includes commentary on the Supreme Court of Canada decision in the Auton autism case. (Justice Robertson, who delivered the Court's decision, was also one of my first year law professors at the University of New Brunswick.). In the disposition the Court concluded that the province was under no obligation to provide the service sought.

The British Columbia Supreme Court and Court of Appeal decisions in the Auton case were huge factors in  energizing Canadian autism advocates.  The expert evidence in the cases summarized authoritatively the strong evidence basis for ABA in helping autistic children overcome serious deficits and improve their quality of life. The British Columbia trial and appeal decisions provided autism advocates across Canada with powerful tools  to use  in  discussions with government autism service providers.

Many autism advocates in Canada, including me, concluded after those decisions were reversed by a unanimous decision of the Supreme Court of Canada in  Auton that Canadian courts would be of little assistance to parents and others advocating for decent education, health and residential care services for autistic children and adults.   The Ontario Court of Appeal decision in Wynberg reversed a  decision which held that the exclusion of autistic children aged 6 and over from a government funded early intervention program discriminated against the children on the basis of age and disability.  Yesterday's decision by the New Brunswick Court of Appeal reaffirmed that  Courts will be of little assistance in advancing the interests of autistic children even if Justice Robertson did offer a nuanced decision which rejected many of the Province's arguments but in the end  dismissed the case. The Auton  and Wynberg reversals  helped  focus Canadian autism advocates by making it clear that redress must be found in legislative change.   It was truly time to "get political".  Here in New Brunswick the Court of Appeal decision again emphasizes the need for  advocates seeking improvements to New Brunswick's adult autism care services to "get political".

The Appeal Court decision highlights once again the need for a New Brunswick based residential care and treatment facility for autistic adults; one that would provide residential care and treatment for the more severely autistic who can not live in a group home setting. The psychiatric hospitals, Centracare in Saint John and the Regional hospital in Campbellton, have  been the only option for severely autistic adults who remained in New Brunswick.  The facts of the case indicate that a complaint was filed on behalf of the individual involved in 2002. It is now 2010, eight years later, and despite further high profile incidents like the housing of an autistic youth on the grounds of the Miramichi youth correctional facility pending an opening at Spurwink, the Province of New Brunswick has made no identifiable steps toward either establishing a secure, modernized residential care and treatment facility for the most severely autistic or toward enhancing a private run group home system that currently has no autism specific training requirements for staffers.

Presentations have been made by advocates and experts here in New Brunswick to the New Brunswick government asking for a modernized residential care and treatment facility in Fredericton.  Fredericton was requested because of proximity to the autism expertise at the Stan Cassidy Center, the UNB-CEL Autism Intervention Training program and the UNB Department of Psychology and the geographically central location of Fredericton with many recreational and other opportunities available for prospective residents of such a facility.   I have been involved in several such meetings and assisted in compilation of a provincial survey several years ago which sought feedback for government discussions concerning adult autism residential care.

In a very recent letter from the current Minister of Social Development, Kelly Lamrock, I was informed that his department is working on these issues. The Province's previous track record on adult autism care suggests that such words are just part of an  "official" response with no specific commitment and  no realistic  chance that positive changes would follow.     It is only the genuine respect I hold for Mr. Lamrock, a person I have met on many occasions in the course of my autism advocacy in his former role as Education Minister, that makes me think that maybe now, finally,  something will be done.

For now though, eight years after the discrimination complaint filed which led to this week's Court of Appeal decision,  an examination of the record shows that  we have done nothing to improve care for autistic adults here at home in New Brunswick.

Nothing, not a darn thing.

Autism's Vast Majority Was Hurt By The DSM-IV. Next Comes the DSM-5 and the New Autism Spectrum Disorder

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp

In the above noted quote the CDC's autism expert Dr. Yeargin-Allsopp did not try to get too precise with the numbers of persons on the "autism spectrum of disorders" who also have an intellectual disability. Two recent CDC surveys estimated that 44% and 41% of persons with ASD have an intellectual disability not 40% but it is difficult to be precise, even for the CDC autism expert,  with large survey figures.  The results of such surveys are expressed with terms like "about" or "approximately" so there is nothing added to our understanding of autism by KWibbling over whether the correct figure is 41% of 44%.  Nor is there any reason based on the CDC approximate figures to KWibble over the Canadian Psychological Association's 2006 estimate that 80% of those with autism, distinguished from Aspergers, also have an intellectual disability. The CPA figure is accepted as consistent, by this humble Dad, until the CPA, or an equally credible, authoritative source says otherwise. 

What we need to do is understand,  as revealed in the quote above from Dr. Yeargin-Allsopp,  that the clear association between autism and intellectual disability was downplayed by the American Psychiatric Association in the DSM-IV revisions.  We should understand the harm these revisions have caused to public understanding of the realities of autism disorders and the further harm that will be done when the "autism spectrum" is again expanded and watered down.  We should understand now and begin to explore the connections between  Intellectual Disability and "classic" autism,  currently called Autistic Disorder,  before the APA plunges ahead with its New Autism Spectrum Disorder in the DSM-V,  which it will do notwithstanding any public commentary or criticism.

This humble father of a 14 year old son with Autistic Disorder and Intellectual Disability is not going to KWibble over the CPA's math unless a credible authoritative source takes issue with the CPA figures and demonstrates that they are wrong.  I am not ashamed of my son's Intellectual Disability and I do not subscribe to the romanticization of  autism and other serious neurological disorders  under the offensive Neurodiversity ideology which describes these disorders variously as cultures,  natural differences or preferences. Nor am I a  "professor of psychology" at a community college or university with the qualifications to take issue with a national professional governing body like the Canadian Psychological Association.

Dr. Yeargin-Allsopp's comments are those of a CDC autism expert telling us in plain language that prior to the DSM-IV revisions which grouped autistic disorder with Aspergers and PDD-NOS the Vast Majority,  not a 50% plus 1 majority, but the Vast Majority of those with autism also had an intellectual disability. That strong and compelling piece of information about the reality of autism as a neurological disorder was obscured by simple definition changes  in the DSM-IV. 

There are some "autism experts" who publish several articles a year, and conduct studies of "autism" involving only high functioning autistic subjects and persons with Aspergers.  They do not make the effort to study the most seriously disabled of all persons with "autism spectrum" disorders ... Autistic Disorder's Vast Majority... those with Intellectual Disabilities.  They routinely publish studies involving HFA and Aspergers studies which invariably get reported in the mainstream media as demonstrating that persons with  autism have hidden, perhaps even superior, intelligence.  That type of feel good reporting obscures our understanding of the realities faced by those who are members of Autistic Disorder's Vast Majority ... those  with an Intellectual Disability,  With the further merger of the PDD's into one New Autisim Spectrum Disorder in the DSM-5, and the further watering down of what constitutes autism, the figure of 40% cited by the CDC's autism expert will, once again, be magically reduced and obscured ... hidden from public consciousness.

Does everyone really think it is just a coincidence that 80% of those with Autistic Disorder, or not to KWibble ....  the Vast Majority, are intellectually disabled?  Unfortunately the American Psychiatric Association is about to  get the DSM-V, and the New Autism Spectrum Disorder, in place to further obscure  and further reduce the impetus to research, explore and understand autism as an intellectual disability.   The vast majority of those with classic autism who are intellectually disabled will not be helped by the DSM-V changes. Their reality will be further obscured and hidden behind an increasingly glossy portrayal of autism in our public discussions.  

Time to order a new set, a DSM-5 version,  of rose colored glasses  with which to look at the New Autism Spectrum Disorder.

Major Autism Genetic Study Highlights Need for Environmental Autism Research

The major new autism genetic study reported over the past few days highlights the need for more research examining possible environmental triggers of autism disorders. Over the past two decades funding for autism research has been provided overwhelmingly in favor of genetic autism research. This major new study which is prompting gleeful headlines around the world actually tells us that there is no common genetic cause of autism, that there are many specific genetic mutations involved with autism. As reported on  CTV News which interviewed Dr. Stephen Scherer, one of the lead researchers on the project , the study itself did not identify all the genetic factors involved with autism disorders and does not begin to identify possible environmental triggers:

"The researchers say that the genetic pattern they found suggested the genetic causes of autism are much more complex than they would have thought. In fact, the findings probably explain only about 3.3 per cent of the genetic origins of autism, and each child with autism appeared to have unique genetic markers associated with his or her disease.

"It is a common disorder but in fact it's a rare genetic variation and each family in a way has their own form of autism," senior study investigator Dr. Stephen Scherer of the Hospital for Sick Children told CTV News. "And we didn't think about it that way before." .... The researchers said the findings support the emerging theory that autism is caused in part by numerous genetic variants. However, these genetic changes are found in less than one per cent of the population, and each variant may only account for a small number of autism cases

...

What the study does not answer is how the genetic changes occur. It's possible that "tiny genetic errors may occur during formation of the parents' eggs and sperm" which then lead to autism from environmental triggers." And experts say the study will allow scientists to ramp up their research into what causes autism and hopefully lead to the development of treatments for the disease." (Bold emphasis added HLD)

As far as this humble layperson can understand  from media summaries of the study  the results are important in identifying genetic markers in some autism cases, and helping confirm the biological structures of autism disorders,  but does not determine what triggers autism in those who are genetically susceptible.  As far as I can tell from reading various reports the study does not rule out ANY possible environmental causes or triggers of autism or of the genetic changes reported in the study.  If anything the study appears to indicated the need for research of environmental triggers to begin in earnest after decades of intentional neglect by those with responsibility for funding autism research.

Conor Prepares for High School

Transition, Planning, Implementation.

Transitions are very difficult for many with autism.  Conor,  who has Autistic Disorder and intellectual disabilities, is now in his last year of middle school and will be moving next year from Nashwaaksis Middle School to Leo Hayes High School.  The planning for that transition began in the new year when we met with a planning  team from the middle school, high school and School District 18.  A good solid  transition plan was worked out and ... equally importantly ... implementation is proceeding as planned.

 

The essence of the transition planning is to famliiarize Conor with the new school itself and the people who will be working with him in small bites while he is still attending his regular middle school. The teacher assistants who will be involved with Conor next year have visited him and begun working with him part days at his current school.  He knows their names, he knows them. They are now part of Conor's picture. Conor has also spent part days at the high school he will be attending next year becoming familiar with the setting in which he will be educated next year. 

Yesterday was  a very good day for Conor.  He spent a full day at Leo Hayes High School working with the teacher assistants in the actual location in which he will be educated next year. Conor's excellent current teacher assistant Brad, who has been involved with Conor for most of his three years at middle school attended with Conor but removed himself from the scene, faded out of the picture, at various times during the day.  Conor did very well and  is scheduled to attend at Leo Hayes High School again this Wednesday for another full day. Hopefully it will go well as it did yesterday.

We had worried about Conor's transition from grade school to middle school but Conor loved it.  In the picture above he is shown posing with his perfect attendance certificate he received after completing his first year at Middle School.   When we moved to our current home 4 years ago we prepared Conor by driving by and pointing out our "new house" to him.  A friend, who is also an educator and Autism Clinical Supervisor, who has previously worked with Conor,  prepared some story boards with pictures of the "new house" on it and the transition was a huge success. So we know Conor  can handle transitions when properly planned for and implemented.

Conor's transition to high school has already begun and, while taking it one day at a time, we are very optimistic that it will work out well for Conor. When  he starts high school next year it will be in a place, and with people, that are already part of Conor's picture.

Evidence of Common Genes Linking Autism Spectrum Disorders and Intellectual Disability

"Apparently an intact postsynaptic structure is especially important for the development of cognitive functions, language, and social competence"

- Professor Gudrun Rappold

In Newly Discovered Gene Variants Lead To Autism And Mental Retardation  Medical News Today reports on a Study by Researchers working with Professor Gudrun Rappold, Director of the Department of Molecular Human Genetics at Heidelberg University Hospital who purportedly have found genetic mutations in the SHANK2 gene, partially responsible for linking nerve cells,  and variants in the number of gene copies that were common to patients with autism and patients with mental retardation. The mutations and variants were not found in control patients in the study.

Professor Rappold stated that "the same mutation can be present in an autistic patient with normal intelligence and in a mentally impaired patient".

The study to which the article refers is Mutations detected in the SHANK2 synaptic scaffolding gene in autism spectrum disorder and mental retardation. S Berkel, CR Marshall, B Weiss, J Howe, R Roeth, U Moog, V Endris, W Roberts, P Szatmari, D Pinto, M Bonin, A Riess, H Engels, R Sprengel, SW Scherer, GA Rappold, Nature Genetics, 2010 in press (tracking number NG-LE27550R1; manuscript ID 589) Doi:10.1038/ng.589

In a  Brief Communication published in the same issue of Nature Genetics the authors state that:

Using microarrays, we identified de novo copy number variations in the SHANK2 synaptic scaffolding gene in two unrelated individuals with autism-spectrum disorder (ASD) and mental retardation. DNA sequencing of SHANK2 in 396 individuals with ASD, 184 individuals with mental retardation and 659 unaffected individuals (controls) revealed additional variants that were specific to ASD and mental retardation cases, including a de novo nonsense mutation and seven rare inherited changes. Our findings further link common genes between ASD and intellectual disability.

I Will Not Cower In Fear, I Will Honor My Son by Speaking the Truth About His Autistic Disorder and His Intellectual Disability

As expected I received more flak when I posted another comment about the CDC Autism Expert Dr. Yeargin-Allsopp's comments confirming that 40% of all persons on the entire autism spectrum also have an intellectual disability.  Dr. Yeargin-Allsopp's comments also mentioned that an overwhelming majority of persons with an Autistic Disorder diagnosis also have an Intellectual Disability. Given the 40% figure for the entire spectrum, which includes all those persons with Aspergers who, by diagnostic definition are not intellectually disabled, the expert's comments confirmed my previous comments and sources that approximately 80% of persons with Autistic Disorder also have an Intellectual Disability.  I am just a humble layperson but an 80% "co-morbidity" rate between two closely related conditions suggest to me  very strongly hat they are in fact one condition which has been artificially separated.  Also as I had expected farmwifetwo was particularly harsh in her comment in response. Speaking about her own child she finished with a shot at me:

"But again Harold... What's the point to the rant...

Do you want those with Autistic disorder like my youngest to be written off from day 1 with "well he's just retarded anyways so why should we bother teaching him". That'll defeat all the work you've put in to push for ABA to be paid in full. The gov't's will say "why bother", let's just toss the money into facilities and raise them like animals... Which is what they use to do. Or do you rather listen to the Ped, the special ed dept, the Psychometrist and something the Teachers and children have all discovered...

He's not "retarded", he's "autistic"... "retarded" only gets him funding and placements. Autistic, gets him educated. Unlike some... I'm not writing mine off at 8 as it's appeared you have at 13... There's a lot of living and learning still to do btwn now and the day we die."

farmwifetwo, June 4, 2010,

Although she is harsh in her writing style I don't believe, from what I have read of FW2's comments here and elsewhere, that she intends to be hostile. I think she is passionate about fighting for her son and I respect that. She is welcome to post here and to continue doing so.  On occasion when I think she has gone over the top I will not publish her comments but generally she does not go too far.

I believe that FW2's comments reflect fear, fear that her son will lose all if he is labelled as intellectually disabled or mentally retarded. I understand her fear but I believe nothing is gained in the long run by hiding the truth about our children's disabilities.  I have no doubt about the severity of my son's autistic disorder and his intellectual disability.  They are part and parcel of the same condition.

 My son is now 14 but I realized long ago the full extent of his diagnosis. He was diagnosed at age 2 and he was also assessed shortly thereafter by New Brunswick's leading specialist in childhood autism, clinical psychologist Paul McDonnell.  His full diagnostic assessment has, for many years, been "autistic disorder assessed with profound developmental delays". I am a lawyer but you don't have to be a lawyer to know what "profound" developmental delays means. As a father I have seen those profound development delays every day of my son's life.  I have no choice but to speak the truth or forever cast myself as a liar. Acknowledging his intellectual disability has not kept me from fighting , at times ferociously, on his behalf and on behalf of other autistic children in New Brunswick. I do not write off my son or any other autistic child with, or without,  intellectual disability.   It is those who pretend that every autistic child is another Dr. Temple Grandin in waiting who write off our autistic children by creating a false public image of the challenges they face.

 

We do a disservice to our intellectually disabled children by recoiling in fear from speaking the truth, from telling the world the full extent of their challenges.  I will not cower before the stigma that so wrongly accompanies intellectual disability.  For me, that also means acknowledging that when 80% of persons with Autistic Disorder also have an Intellectual Disability that the two are not just related conditions.  They are part and parcel of one neurological condition that has been artificially separated.

Autistic Disorder and Intellectual Disability separate disorders? Sell that bridge to nowhere to someone who hasn't already crossed the river and seen the truth.

Council of Europe Committee Report Denounces Unjustified Swine Flu Scare, Waste of Public Money

Attached is the press release from the Social, Health and Family Affairs Committee of the Parliamentary Assembly of the Council of Europe (PACE) outlining the conclusions of the provisional PACE report, The handling of the H1N1 pandemic: more transparency needed. The Press Release  denounces the unjustified Swine Flu scare and waste of public money. Fiona Godlee, Editor-in-Chief of the British Medical Journal,  told the Council that, according to an investigation by her journal, scientists who drew up key WHO guidelines on stockpiling flu vaccines had previously been paid by drug companies which stood to profit.

Meanwhile, here in New Brunswick, Canada, on the same day the Council of Europe report was released questioning the handling of the H1N1 flu our Department of Health announced plans to expand  our seasonal flu vaccination program to cover all children under 18 "after the success of last fall's H1N1 campaign."  The Department of Health Deputy Chief Medical Officer Paul Van Buynter measured success solely by the large numbers of New Brunswickers who received the H1N1 shot.  There is no mention of the many credible voices, in Canada and in Europe who have questioned whether the scare campaign launched in Europe and elsewhere including here in New Brunswick was justified.

Press release - 455(2010)

PACE Health Committee denounces ‘unjustified scare’ of Swine Flu, waste of public money

Strasbourg, 04.06.2010 – The handling of the H1N1 pandemic by the World Health Organization (WHO), EU agencies and national governments led to a “waste of large sums of public money, and unjustified scares and fears about the health risks faced by the European public”, according to a report by the Social, Health and Family Affairs Committee of the Parliamentary Assembly of the Council of Europe (PACE) made public today in Paris.

The report, prepared by Paul Flynn (United Kingdom, SOC) and approved today by the committee ahead of a plenary debate at the end of this month, says there was “overwhelming evidence that the seriousness of the pandemic was vastly overrated by WHO”, resulting in a distortion of public health priorities.

Presenting his report, Mr Flynn told the committee: “this was a pandemic that never really was”, and described the vaccination programme as “placebo medicine on a large scale” (see video below).

In its adopted text, the committee identifies what it calls “grave shortcomings” in the transparency of decision-making about the outbreak, generating concerns about the influence of the pharmaceutical industry on decisions taken. Plummeting confidence in such advice could prove “disastrous” in the case of a severe future pandemic, it warns.

In particular, the WHO and European health institutions were not willing to publish the names and declarations of interest of the members of the WHO Emergency Committee and relevant European advisory bodies directly involved in recommendations concerning the pandemic, the parliamentarians point out.

However, attending the meeting was Fiona Godlee, the Editor-in-Chief of the British Medical Journal, who told the parliamentarians that, according to an investigation by her journal, scientists who drew up key WHO guidelines on stockpiling flu vaccines had previously been paid by drug companies which stood to profit.

The WHO has been “highly defensive”, the committee said, and unwilling to accept that a change in the definition of a pandemic was made, or to revise its prognosis of the Swine Flu outbreak.

The committee sets out a series of urgent recommendations for greater transparency and better governance in public health, as well as safeguards against what it calls “undue influence by vested interests”. It also calls for a public fund to support independent research, trials and expert advice, possibly financed by an obligatory contribution of the pharmaceutical industry, as well as closer collaboration with the media to avoid “sensationalism and scaremongering in the public health domain”.

The report is due to be debated by parliamentarians from all 47 Council of Europe member states on Thursday 24 June during PACE’s summer session in Strasbourg.

Contacts

In Paris: Francesc Ferrer, mobile: +33 (0)6 30 49 68 22

In Strasbourg: PACE Communication Division, tel. +33 (0)3 88 41 31 93, mobile: +33 (0)6 30 49 68 20

CDC Autism Expert: 40% of Persons with an Autism Spectrum Disorder Also Have an Intellectual Disability

I have commented on several occasions about the fact that many persons with Autistic Disorder also have Intellectual Disabilities. That fact is a reference to Autistic Disorder as it currently exists in the DSM-IV and excludes, by definition, the many persons with Aspergers Disorder one of the Pervasive Developmental Disorders now commonly referred to as Autism Spectrum Disorders. I have pointed out that the Canadian Psychological Association has referenced studies indicating that 80% of persons with autism ... excluding Aspergers .... have an intellectual disability or cognitive deficit. I have pointed out that two surveys conducted by the CDC (2004 and 2006) indicated that 41-44% of persons with Autism Spectrum Disorders,  also have intellectual disabilities.   Since the Autism Spectrum includes all those with Aspergers who, by diagnostic definition are not intellectually disabled, the CPA and CDC  approximate figures are consistent: approximately 80% of those with Autistic Disorder are intellectually disabled and approximately 40% of those on the entire "spectrum" of ASD's are intellectually disabled. 

The reactions by SOME persons with High Functioning Autism and Aspergers and SOME parents of children with High Functioning Autism and Aspergers to this information have not always been polite.  Some have claimed that somehow my use of these reported facts is wrong although I have never seen a coherent explanation for that claim.  In a recent interview in the CMAJ Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC,  confirms the information set out above.  Dr. Yeargin-Allsopp commented on the expansion of the autism definition changes that have taken place since the 1980's:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

  

Autistic Disorder is the current diagnostic category (although that will be changed in the DSM-5) which would include those who would have been diagnosed with autism in the 1960's and 1970's.  That is the category where the vast majority as Dr. Yeargin-Allsopp states also have intellectual disability.  It is only the inclusion in the  broad definition of "autism"  of Aspergers Disorders, which  by definition includes no one with intellectual disability, that lowers the percentage of persons with autism who also have an intellectual disability from the 80% figure to the 40% figure. Those with Autistic Disorder are still in the 80% range of "co-morbidity".

It is crystal clear that these authorities assert that 80% of persons with Autistic Disorder are also intellectually disabled. By pretending that these conditions are "co-morbid", unrelated, coincidental conditions we are ignoring the obvious relationship between them.  We are ignoring the fact that classic autistic disorder is a form of intellectual disability. 

The fact that 80%, even an unspecified "vast-majority", of those with Autistic Disorder also have an intellectual disability  is not a coincidence.  It is time now to acknowledge that fact before the DSM-5 arrives to further expand the definition of autistic disorder and further  obscure  the harsher realities of autistic disorder as we know it today. 

Autism Is A Learning Preference Not a Disability? Educationalist Needs Some Reality Based Autism Education

educationalist

Main Entry: ed·u·ca·tion·ist 

Pronunciation: \ˌe-jə-ˈkā-sh(ə-)nist\

Variant(s): also ed·u·ca·tion·al·ist  \-shnə-list, -shə-n^əl-ist\

Function: noun

Date: 1829

1 chiefly British : a professional educator
2 : an educational theorist

preference

Main Entry: pref·er·ence 

Pronunciation: \ˈpre-fərn(t)s, ˈpre-f(ə-)rən(t)s\

Function: noun

Etymology: Middle English preferraunce, from Middle French preferance,from Medieval Latin praeferentia, from Latin praeferent-, praeferens,present participle of praeferre

Date: 15th century

1 a : the act of preferring : the state of being preferred b : the power or opportunity of choosing

2 : one that is preferred

3 : the act, fact, or principle of giving advantages to some over others

"New Zealand schools should view autism as a learning preference, rather than a difficulty or disability, says UK educationalist Neil Mackay."

According to the Miriam Webster online dictionary an educationalist is a professional educator or an educational theorist.  In the above reference  which also formed the headline  of the article in question and is now on the internet the Educationalist distorts the realities of Autism Disorders.  A preference, as set out in the MW involves a choice, the power to choose. Even for those with High Functioning Autism or Aspergers I have never seen a scholarly article or even a Neurodiversity ideological tract which describes their methods of learning as being choices.

The educationalist says  that autism is not a disability? Tell that to those with Autistic Disorder and intellectual disability. For them, including my son, autism is a serious disability.  The Educationalist should educate himself about autism DISORDERS before telling the world that autism is not a disability.

Educationalist educate thyself!

Autism Blame From Refrigerator Moms to Stressed Out Moms and Dads

That deep well of autism knowledge, the New York Post, shouts the retro headline in tabloid size letters:  The parental stress behind autism.   Where once cold and distant mothers were blamed for causing their child's autism disorder now the blame is laid at the feet of both parents, stressed out moms and dads.  What would Bernard Rimland say? 

"Parents stressed out from hectic lives and neglected or volatile marriages are putting their kids' health at risk, too. Parental stress may be a major factor in many childhood problems, including even autism and asthma.

That's the conclusion of more than 20 separate studies, including several articles by the National Scientific Council for the Developing Child, a Harvard-based group of researchers from top universities: "The realization that stresses experienced by parents and other caregivers can affect a child's developing brain architecture and chemistry in a way that makes some children more susceptible to stress-related disorders later in life is startling news to most people."

Thank heavens they did the research and now all further autism causation research can be shut down and money saved.  It WAS those darn, evil parents of autistic children all along.  That 'll teach them for asking questions about autism and vaccine safety. 

Serves them right.

New Autism Spectrum Disorder and Severity: DSM-5 Puts the Cart Before the Horse

From DSM-5 Development, Autistic Disorder, Severity, June 1, 2010 

The decision has already been made by the American Psychiatric Association's DSM revision team to rename and revise the current Pervasive Development Disorders in the DSM-IV  by combining them into one Autistic Disorder 299.0. 

The DSM-5.org site presents a rationale for the changes including the observation that "A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”." I am not that big on meatloaf so they have lost me with that image.

The New Autism Spectrum Disorder (NASD) rationale also states that currently :

•  ... distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
• Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.)

As the father of a boy with Autistic Disorder with profound developmental delays, a boy who in ordinary language would be described as severely autistic and affected in every single aspect of his existence by a low functioning level I understand the severity aspect of the rationale for the New Autism Spectrum Disorder. I  tire of listening to the barely autistic engineers, lawyers, writers, university students,  successful business persons, Washington political circle navigators and IMFAR  socialites who are interviewed daily by the main stream  media and tell the world what it means to "be autistic".

Despite my previously expressed concerns (1, 2)  about the New Autism Spectrum Disorder I can see the logic in one"spectrum" disorder as long as the spectrum is clearly differentiated, as the DSM-5 site suggests, based on severity.   Unfortunately the DSM-5 people have committed to the New Autism Spectrum Disorder without having clear criteria for differentiating severity categories and criteria in the NASD, or at least without having communicated severity criteria to the public including "autism parents" like this Dad.

I don't know much about cleaving meatloaf at the joints but it seems to me that  with the New Autism Spectrum Disorder the DSM-5 team has put the  cart before the horse by committing to the creation of a single autism spectrum disorder,  the New Autism Spectrum Disorder, which recognizes distinctions based on severity,  without first clearly defining severity categories or criteria.

Until comprehensible severity categories and criteria are developed this father of a boy diagnosed with the current Autistic Disorder and assessed with profound developmental delays says NEIGH to the New Autism Spectrum Disorder.