The Joy of Conor, September - December 2009

autism

Intellectual Disability Acceptance in the Autism Community

One of the major problems arising from the expansion of the "autism spectrum" concept since 1994, and particularly in the last decade, is the tendency to hide the straight forward, incontestable fact that an over whelming majority, approximately 75-80% of persons with Autistic Disorder are intellectually disabled or cognitively impaired. The concept of "autism" was expanded to include a large group of people who, by definition, do not have intellectual disabilities or cognitive impairment. This expansion resulted in a glossing over of the close association between Autism and Intellectual Disability.

Even an important study like the autism prevalence study recently reported by the CDC expressly obscures the high number of persons with Autistic Disorder who are also intellectually disabled or cognitively impaired by spreading that percentage along the entire spectrum:


"Data show a similar proportion of children with an ASD also had signs of intellectual disability, averaging 44% in 2004 and 41% in 2006."

CDC Counting Autism

The estimated number of persons with Autistic Disorder and Intellectual Disability would be much higher if the CDC figures had excluded persons with Aspergers, none of whom would, by definition, be intellectually disabled or cognitively impaired.  Assuming equal numbers of persons with Autistic Disability and Aspergers Disorder the percentage of persons with Autistic Disorder and ID would be  doubled to roughly 80%.

The 80% figure is consistent with the estimates made by the Canadian Psychological Association in its "Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006:


"Symptoms and Impairments:


• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. 

Although intellectual disability is so common in persons with Autistic Disorder it is rarely mentioned yet alone discussed in the autism "community" and almost never discussed by the Neurodiversity branch of the autism "community. Neurodiversity bloggers and ideologues tend for the most part to be persons with Aspergers Disorder who themselves are not intellectually disabled,  and by some high functioning persons with autism. While both of these groups like to identify with the term "autism" and like to identify with historical figures who they speculate to have been autistic they do not like to identify with  the many low functioning autistic persons with Intellectual Disability.

It is common to read blog comments about  "awetism" and the "joy of autism", Autistic Disorder itself is a serious disorder which impairs the lives of many who actually live with it but for those who embrace the term autism ... well it is just plain .. cool.  Mozart, Einstein,  Orwell, Van Gogh ... are all speculated to have been autistic. In the most extreme case of such wild speculation that I have read  Jesus Christ  is speculated to have been autistic.  Yet the existence of the 80% of persons with diagnosed Autistic Disorder and Intellectual Disabilities are barely mentioned or acknowledged.

To the contrary, any portrayal of persons with Autistic Disorder as living difficult, challenging lives restricted by their disorder are subject to organized protest campaigns by some very high functioning persons with Aspergers Disorder.  Parents who speak openly about the challenges faced by their low functioning autistic children are maligned as being engaged in pity parties  or parades of woe, usually by the same very high functioning persons, often "aspies" who like to identify with autism. 

The fact is that approximately 80% of persons with Autistic Disorder, the original "auties",  are intellectually disabled or cognitively impaired.

Those who try to suppress this information are suppressing the most basic of human rights, the right of  every person to have their existence acknowledged by the world and to be known by the world as who they really are.

It is time, as we begin a new decade, for "autism" self advocacy organizations and Neurodiversity bloggers alike to start showing respect for the 80% of persons with Autistic Disorder and Intellectual Disability, stop denying their existence and stop being ashamed of the less fortunate members of their alleged autism community.

It is time for persons with High Functioning Autism and Aspergers to start accepting autistic persons with Intellectual Disability and recognize that their Intellectual Disabilities are not just  unrelated coexisting or comorbid conditions. Intellectual Disorders are a very real and integral part of Autistic Disorders. 

autism

Conor Enjoys Some Snow Fun Before the Big Storm

Conor was happy to get out and enjoy the snow even with the face mask to keep his face good and warm. His timing was good with a big storm expected tonight and tomorrow likely to keep us housebound for the day.

autism

ASAN Board of Directors Excludes Autistic Persons with Intellectual Disabilities

Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":

"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.

Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.

Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication

Paula Durbin-Westby, B.A.(BA degree info obtained here) .... has testified at numerous IACC meetings

Meg Evans is currently employed in the legal publishing industry. She is a licensed attorney in the State of Ohio and received her law degree from Case Western Reserve University in Cleveland, Ohio. 

Elesia Ashkenazy  ...   possesses a B.A. degree in Speech & Hearing Sciences from Portland State University. She is a licensed Speech-Language Pathology Assistant (SLPA) (BA degee and SLPA license info obtained here)

Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."

The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired.  This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.   

None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses.  In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all.  In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis.  Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism   disorder. 

The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum".  ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.

As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it.  When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own.  His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".

ASAN directors oppose curing autism. They declare that "WE" do not want to be cured.  Well and good.  If my son had their intellectual AND social skills I would not want a cure for him either. But he does not  have their abilities and many persons actually diagnosed with Autistic Disorder do not.

ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses.  They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.

ASAN misrepresents itself when it claims to being a "self advocacy"  network for persons on the "autism spectrum".  It is a claim that should be dropped.

autism

Autism Reality and Hope for the New Decade in New Brunswick

My son Conor, who has Autistic Disorder,  does not live in an autism "community" on the internet. He lives with his family in Fredericton, New Brunswick, Canada.

In expressing my hopes for him  over  the next decade  it is to our local realities, here at home,  that I look first. I hope that the huge gains New Brunswick has made in providing autism specific early intervention and education services are not lost, or diminished, in the face of economic instability that has emerged to shake the world.  And I hope that needed changes can be made to improve the lives of New Brunswick adults with autism and particularly to improve our system of youth and adult residential care.

Some Canadian provinces have already seen the discontinuance of some hard won autism services.  In an overcrowded lifeboat it is easier to first throw the weak and vulnerable into the cold choppy waters than the strong and capable.

Here in New Brunswick the gains that have been made have been under constant pressure from some Education department officials who resent what they have seen as a loss of control by having Teacher Assistants and Resource Teachers trained at the UNB-CEL Autism Intervention Training program. The program has been very favorably reviewed by Dr. Eric Larsson but Education officials have not been happy with a program that arose from external parent driven advocacy and have been determined to regain what they perceive as a loss of Departmental control. To that end they are in the process of detaching themselves from the excellent local training at UNB and have sent Department members to the United States to become trained as  BCBA's who then will be providing training in house to teacher assistants.  Previous versions of this plan did not require the assistants who are trained internally to have any existing qualifications, did not require a time table for completion of training and did not even require testing upon completion of the program or phases of the program.

The union representing teacher assistants also objected to the UNB training requirement and insisted on the right of senior, untrained TA's to work with autistic students in place of the autism trained but junior in seniority TA's.  Under the diluted, in house training proposals  a conflict between seniority and qualifications or ability would not arise. The lack of any real standards meant that every TA who wanted to work with an autistic child would simply have to sign up for the Department training and learn on the job with the autistic student they worked with.

Unfortunately, with the Department having already funded some of its people to acquire their BCBA status in the US for the purpose of "training" TA's in house,  it appears that the quality and integrity of the UNB-CEL Autism Training Program will become a thing of the past. It will be replaced by  the in house training that ensures Education Department officials can exercise tight control over the autism training process, and training expenditures, and will buy peace with the union representing Teacher Assistants. The interests of adults will probably prevail over the interests of autistic students unless a new generation of parent activists arise to challenge this transition.

The area in which progress has been almost non existent in New Brunswick has been adult services and particularly residential services. New Brunswick has placed autistic youths and adults wherever they could at times including on the grounds of a youth correctional facility, the ward of a general hospital and in psychiatric institutions in Saint John and Campbellton.  Those who have lived in the community based residential facilities live in facilities where the staff have no autism specific training.  Efforts to remedy this process have not resulted in any substantial progress over the past few years although there is hope that a system review and community consultation process will begin over the next year.  It will be a huge challenge but one that must be started as our autistic population matures.

To those who like cheerful, feel good predictions for the future my comments will not be well received.  My experience though tells me that if we do not look at the reality of the challenges we face, in this case the autism realities, no real progress will be made.   By all means we must remain optimistic about the possibility for progress but we must undertake to make that progress happen by facing the real challenges realistically and fighting hard to change things for the better.  I say this because I have been involved, with many other parents, in doing exactly that over the past decade and I know that is what it takes.

Happy New Year and Happy New Decade to all.

autism

Autism Reality On The Last Day of the Decade:The Autism Spectrum Concept Has Been Harmful, Part I

On this last day of this decade, as we prepare for 2010, and all that the next decade will bring,  it has become apparent that a major autism development of the last decade has been the growth of the Autism Spectrum concept.

The growth of  the Autism Spectrum concept has caused considerable harm to the interests of many persons severely affected by  Autistic Disorder, especially the 75-80% of persons with Autistic Disorder who are intellectually disabled or cognitively impaired. For these severely autistic their life realities are obscured and even hidden by the Autism Spectrum and by some high functioning, high profile media attractive persons who define autism in the public mind.

The Autism Spectrum concept has created confusion  about what constitutes "autism".  Some members of the public, talk show hosts, and  comics, joke about autistic persons as spoiled children who would have been given a good spanking back when they were kids. These people obviously do not see the children with Autistic Disorder who bite themselves, chew the insides of their cheeks, bang their heads until they cause injury, starve themselves out of aversion to food tastes and textures or wander away from their homes, some to be lost forever.  They see some very high functioning persons with no readily apparent disabilities who are "on the autism spectrum".

Yes, the mainstream media publishes reports when an autistic child or severely impaired adult goes missing. When an autistic Nove Scotia boy disappeared before a snow storm, and died of hypothermia, the media and Canadians reacted with genuine compassion and feeling for the poor boy and his family. But even then there was little in depth coverage of how many autistic children, and adults, go missing or the steps that have to be taken to ensure that others do not. Even the tragic death of  the young Nova Scotia boy did not prompt the mainstream media to thoroughly explore the harsher realities of autism disorders.

By contrast the media has been obsessed with promoting images of very intelligent, high functioning persons "on the spectrum" as the expression is used today.  CBC has many times featured Michelle Dawson, a person with "autism",  who excelled in the  challenging work environment of Canada Post and is now an autism researcher. CNN on several occasions featured  Amanda Baggs, a  very intelligent person who did not have an autism diagnosis earlier in life and who attended a school for intelligent,  gifted youth.

Today Alex Plank and Ari Ne'eman are the newer faces of  the "autism spectrum", two very intelligent young University students with Aspergers Disorder who tell the world what it is like to be Autistic, who take it upon themselves to tell the world that Autistic People do not want to be cured.   Mr. Ne'eman is an obviously intelligent gentleman with very highly developed communication and organizational skills.  He functions and operates very well in the complex world of Washington politics  and communicates regularly with the most influential media institutions in the world.  To the general public, and to the mainstream media,  Dawson, Baggs, Plank and Ne'eman are what they see when they close their eyes and visualize what it is like to be  "autistic".

It is no wonder that sufficient funds are not made available to support autism research, to find causes of, and cures for,  autism disorders.  The public  does not see the harsher realities of autism. They do not see lengthy, repetitive  features about the life of individual autistic persons with Intellectual Disability or autistic adults living in institutional care. The public sees a very positive image of autism, the one at the very highest end of the "autism spectrum".  As a general rule that is all that they see.

It is not an image that would necessarily generate much funding to find cures for autism disorders.  Especially when the media savvy persons at the high functioning end of the "autism spectrum",  tell the world that WE, referring to people "on the autism spectrum", including those with Autistic Disorder and  cognitive impairment, including those autistic adults living in the care of others,  do not want to be cured.

Without the "autism spectrum" concept, widely used today, a person with mild Aspergers would not be able, with a straight face,  to claim to speak on behalf of the severely disabled autistic persons whose harsher impairments, he or she,  does not share, and whose lives bear little resemblance to their own. The "autism spectrum" concept may have some useful diagnostic purposes, but it has also caused harm. It has helped keep the realities of the severely autistic, the 75-80% of persons with Autistic Disorder who are also intellectually disabled, the autistic children who hurt themselves, the adults living in institutional care, out of sight and mind.

There is a natural media, and human, tendency to want to see things in a positive light.  The media loves the high functioning end of the "autism spectrum" and ignores the harsher realities at the low functioning end of that same spectrum.  The autism spectrum concept itself allows them to do so with a clear journalistic conscience.

autism

Autism Events of 2009 - The Good, the Sad and the Ugly

As we turn towards 2010 these are AutismRealityNB's autism events of the year:

The Good 

Public authorities begin to acknowledge the extent of the autism crisis and the role of environmental factors.

1) In an historical development  IACC director Dr. Tom Insel acknowledged that environmental factors are a component of autism. 


2) The CDC estimated that between about 1 in 80 and 1 in 240, with an average of 1 in 110, children in the United States have an Autism Spectrum Disorder.


3) The CDC estimated that   29.3 to 51.2% of children with Autism Spectrum Disorders  also had an Intellectual Disability.  (That estimate itself misleads by including Aspergers with Autistic Disorder in estimating ID prevalence "on the spectrum"). The percentage of persons wih Autistic Disorder and  Intellectual Disability is approximately 75-80%. 

The Sad

4) Autistic Children continue to wander from their homes, some to perish as did young James Delorey of Nova Scotia. The autistic Nova Scotia boy left his home  prior to the onset of a bad winter storm.  Although he survived the storm initially, he suffered extreme hypothermia and died shortly there after. 

The Ugly 

5)  US President Barack Obama nominated to a national disability council a young University student with Aspergers Disorder who has held conflicting and ambiguous views on whether autism disorders are disabilities, has opposed curing autism and has organized protests of  events held to raise funds to benefit autistic children including funds for autism research. 

6) The Mainstream Media fawned over the anti-autism cure University student with Aspergers, and promoted his agenda, while failing to note that the protests he organized drew only a handful of protestors and that some other persons with Autism Spectrum Disorders disagreed with his anti-cure positions. The same mainstream media failed to note that families  trying to cure their own autistic children, many of whom are much more severely affect by Autistic Disorder and Intellectual Disability than  the anti-cure University student with Aspergers, are trying to help their children live the fullest, most rewarding lives possible.

autism

The Purely Genetic Model of Autism and My Westmorland Street Bridge Knock Out

Yesterday I suffered a concussion. While taking pictures I slipped and fell and was knocked out for a few minutes on the Westmorland Street Bridge in Fredericton . I had received a very good whack on the back of my head.  On coming to I immediately checked ... my camera was OK. After walking further to the Second Cup  for a coffee I called home and Heather recommended I get checked out at the DECH, the Doctor Everett Chalmers Hospital, which I did. The pictures above are of the WS Bridge and some of the pictures   I took immediately before my fall.

Today, with a slight headache,  I was thinking about the incident and while I was knocked out I don't think I suffered any great damage. Another person though, not blessed with such a thick skull, might have suffered more serious injuries.    My fall on the bridge makes me think again of the view that autism is purely genetic, the view that has dominated autism research funding models and neurodiversity  autism ideology over the past decade. It is a view which excludes any reference to external, environmental factors in causing or triggering autism.  Autism is inherited, end of story.

According to the "it's gotta be genetic" mindset  no external factors be they vaccine ingredients, power plant emissions, drinking water contaminants, plastics components, or the ingredients in the children's toys and jewelry that are all around us could possibly be involved in causing autism disorders. This grand assumption flies in the face of the fact that in some cases an identical twin will have an autism disorder while the other does not. It flies in the face of the fact that  people are genetically and biologically different in their ability to absorb external shocks.  One guy can take a punch, even a knockout,  and get back up and fight, or play hockey or football, another is out of the game. One guy can slip on ice and be rendered unconscious but get up and be none the worse for wear beyond a good headache the next day. Another might not recover so well.   One child has a preexisting mitochondrial disorder that renders her vulnerable to vaccine delivered shocks, another does not.

That "it's gotta be genetic view" of autism identified by Teresa Binstock 10 years ago is slowly giving way to the more likely and common sense based view that autism, like most conditions in life, good or bad,  results from the interaction of genetic and  environmental factors.  Even the IACC and Dr. Tom Insel are grudgingly beginning to acknowledge that likelihood and to acknowledge the need for increased funding of environmentally focused autism research.

We have reason to hope that the "it's gotta be genetic", frozen view of autism  will soon  be thrown off the research funding bridge ... or at least suffer a serious slip and fall. Hopefully 2010 will be the year that   environmentally focused autism research gets up on its feet and we begin to understand all the factors that cause or trigger autism disorders.

autism

Autism and ScienceBlogs: Dr. Gorski Replies, Sort Of

Alleged science blogger Dr. David H. Gorski is at it again lashing out at anyone who disagrees with his views, and hurling ad hominem attacks. Once again Dr. Gorski  demonstrates no knowledge of autism disorders while commenting, albeit indirectly, on autism causation.

Dr. Gorski displays poor research skills  by describing me as an Age of Autism hanger on which is quite funny because I have over the years often disagreed with views posted on that site. A year ago I questioned Kent Heckenlively of Age of Autism about his apparent endorsement of the ACE Pathway investigation one of several critical posts  I made about ACE Pathway which I viewed with concern.

If Gorski actually read anything on this site he would know that I advocate for evidence based interventions and services for autistic children and adults and have done so for a decade along with other parents, and with some real results, in my home province of New Brunswick, Canada. In our autism advocacy efforts studies and reports by  American health and science experts on autism were the foundation of our efforts. They were invaluable. Dr. Gorski's name was not amongst those that I have encountered over the years as having any expertise on the subject of autism.

I never used to accept that vaccines played any role in causing autism.  I have  moved from agreeing with the view  that there was no merit at all to the vaccine causes autism theories to accepting that the issues arising from the injection of vaccines into children and pregnant women have not been "determined for all time" and may trigger autism in some vulnerable predisposed children.   My move toward an open mind on these issues was prompted not by the Age of Autism but by Dr. Healey, Dr Poling and even Dr. Julie Gerberding, the soon to be Merck vaccine division head and former CDC director. Dr. Gorski would know this if he actually read this site before slinging mud.

Dr. Gorski, apart from failing to demonstrate any knowledge of autism in his new commentary, also tried to reduce my views, and the views of many others, about potential environmental causes of autism to the vaccine issues.  He does so  no doubt because it is easier to attack people who question vaccine safety than those who question the impact of environmental chemicals generally on the neurological development of children. Dr. Paul Offit has led a very successful campaign to whip the mainstream media into condemning people who question vaccines as fringe, hysterical extremists.  It is more difficult for Gorski, or Offit for that matter, to argue that it has been "scientifically proven for all time" that there are no environmental causes or triggers of autism.

I don't know if Dr. Gorski is aware of the recent CDC study which measured and reported on 212 toxic chemicals found in our bodies today,  a list which included mercury, lead, aluminum, arsenic and many other goodies.  Like the autism prevalence study and the Gerberding move to Merck announcements, this study too was "publicized" in the pre-Christmas period when most people, and especially the mainstream media, are busy with family and Christmas.  With so many toxic chemicals in our bodies, with rising incidence of autism disorders in our children it is not just unscientific to assume that these chemicals are not involved with causing autism disorders ....  it is foolish.

My lay person's understanding of science is based on the notion, perhaps naive, that issues are not "decided for all time".  I am now in the undecided camp about vaccines and autism and suspect that in some instances vaccines may trigger autism disorders, and other neurological damage, in some children.   I believe that more study should be done on this issue.  

And I believe very firmly that the imbalance in funding of autism research must be shifted from the near 100% funding of genetic based autism research to a  model which provides equal funding for environmentally focused autism research. 

I hope that the ScienceBlogs bloggers abandon cheap personal attacks on those who question vaccine safety and offer ... some real science.   I hope they live up to their claim of being science bloggers ... at least when they are discussing autism disorders.

autism

A ScienceBlogs Blogger Who Discusses Autism Rationally!

I am only a layperson, a humble parent, and small town lawyer, who makes no pretense to being a scientist. But I have a hard time reading blogs like Respectful Insolence by Orac (Dr. David Gorski) and believing that his blog is anything remotely resembling scientific discourse. His cheap and repetitive insults about Jenny McCarthy, David Kirby, the Geirs, Dr. Wakefield, biomed autism parents and professionals, etc do not resemble the science classes I attended in High School. "Woo", "quackery" and "lunacy" and other such terms that litter his every post do not seem to belong in a truly scientific lexicon, as this humble observer understands science.

Apart from Dr. Gorski and his ranting I have looked for other alleged science bloggers at ScienceBlogs who have commented rationally about autism. I haven't found too many that deal with autism at all, other than to deride the persons listed above, and anyone who questions the possible role played by vaccines in causing autism in some children. I have found one exception though at Greg Laden's Blog.

In Autism Study Examines Cause of Apparent Rise in Rate  Mr. Laden, who has a Ph.D. in anthropology, published a comment, on January 12, 2009, on the subject of the study by Irva Hertz-Picciotto and Lora Delwiche of the M.I.N.D. Institute, UC Davis, which examined the apparent (Dr. Laden's adjective)  rise in the frequency of diagnosed autism in California. That study noted that diagnostic definition changes, increased awareness and other social factors did not appear to explain the increases in autism noted in the study and suggested the need for more even funding of autism research to include possible environmental causes for autism.

Dr. Laden's remarks were fair, balanced and objective.  He noted the limitations of the study as well as some of the possible implications.  Dr. Laden addressed the fear that the study in question might have been overly influenced by anti-vax groups with an expanded 'environmental' focus but acknowledged that the study could, and should, stand or fall on its own merits in the long run. To this layperson Dr. Laden's approach smacked of .... well,  of science ... as I was led to believe it existed in my school science classes:

The fact that a careful look at reporting and diagnostic effects does not readily explain the level of magnitude of the change we see here suggests that more explanation is needed. 

In the absence of a correlation between these data and a list of causal effects (which could then lead to some effective hypothesis testing) it important to keep an open mind about what causes autism. I can think of no reason that this study's validity or lack thereof informs us in this regard. Those who wish to insist that no matter what there is no increase in autism rates are no less a failure at explaining autism as those who see a real increase in graphs like this one. 

Meanwhile, the authors of this study and others are looking into the data further to test for environmental links.

I don't know if Dr. Laden has since retreated from his reasonable response to  he UC Davis Mind study under pressure from alleged science bloggers  and Neurodiversity ideologues or not.  The  comment section following his commentary contains diatribes from the usual Neurodiversity ideologues  like Kev Leitch and Mike Stanton and of course "science" blogger Orac\Gorski who throws personal insults at Dr. Laden about his knowledge of the autism spectrum. (I am not sure what expertise, if any, Dr. Gorski  has concerning autism disorders, I understand he is a surgical oncologist at the Barbara Ann Karmanos Cancer Institute specializing in breast cancer surgery).

I was unable to find any commentary at Greg Laden's blog about the recent CDC figures on autism prevalence now estimating that 1 in 110 children are affected by an autism disorder.  The study results were released just prior to Christmas with the obviously forseeable consequence that people would be occupied with other matters and not paying attention to the announcement.  Perhaps he would rather just not wade again into the dirty waters inhabited by the Insolent Dr. David H. Gorski and Neurodiversity ideologues Kev Leitch and Mike Stanton. 

Perhaps Greg Laden will offer commentary on the new CDC autism figures in the New Year.  Whatever the situation I hope that actual science bloggers and commentators are not scared off by the likes of Gorski, Stanton and Leitch.  Autism disorders, particularly Autistic Disorder, are very serious disorders that impair the lives of many.  Autistic children and adults can use good scientific analysis and discussion  about autism research and not the trash talk which is offered by so many alleged "science" bloggers listed at ScienceBlogs.

autism

Autism and the CDC - Who is the CDC Working For? You Can't Make This Stuff Up

"In other CDC news- former CDC director Dr. Julie Gerberding (2002-2009) was just appointed by Merck to head up their 5 billion dollar a year global vaccine division. ..... How delightfully ironic the person who headed up the CDC- who sat back and watched autism become an epidemic in this country and couldn’t tell us anything except “it’s not the vaccines” will now be working for a major vaccine manufacturer. Heck, maybe they had her on the payroll all along? You can’t even make this stuff up."

Andrea Keller, Letter to the Editor, Vindy.com

The press release of Dr. Julie Gerberding's move to Merck's global vaccine division after recently serving as head of the CDC was dumped  at  a time when it would be drowned out by the hectic Christmas season.  Andrea Keller was paying attention though and hopefully autism bloggers and concerned parents will keep this news alive.  The cozy ties between public health authorities like the CDC and pharma giants like Merck raise important public health issues, in this case autism issues, that should not be obscured by skillful news cycle manipulation.

autism

CDC Autism News Update 2015: Diagnostic Definition Changes, Increased Awareness Behind Recent Autism Surge

January 1, 2015 CDC Autism News Update

In a New Years day  media briefing the CDC has explained that its latest autism prevalence data, released two days before Christmas this year, and  showing a sharp rise in ASD, short for Autism Social Difference,  diagnoses, from 1 in 75 in 2012 to the current estimate of  1 in 50, is probably due to diagnostic definition changes and increased awareness.

New CDC Director Arnie Newman, who is himself "on the spectrum" with an  ASD diagnosis of Asperger Social Difference, says that some tiny, insignificant part of the increase could theoretically be due to environmental factors.  Dr. Newman also noted we are all fortunate to be living in the Acceptance Era when offensive terms like "Disorder" and "Disability" have been replaced by the enlightened  concept of "Difference". 

In what it repeatedly emphasized was a totally unrelated development the CDC also  finally released its  Sixth National Report on Human Exposure to Environmental Chemicals. The report is the most comprehensive assessment to date of the exposure of the U.S. population to chemicals in our environment. CDC has measured 2120 chemicals in people's blood or urine—750 of which have never before been measured in the U.S. population.

We now know  that there are lots of environmental chemicals in our bodies said Dr.  Newman but we should not assume that they cause any harm. Dr. Newman stated in closing that the CDC long term study plan projections for the year 2025 include the possibility of examining the effects, if any,  of such chemicals on the developing neurological systems of fetuses and young children.  Such a study is definitely, or at least probably, on our list of possible future research priorities said Dr. Newman.  

autism

Conor Christmas Joy

Conor enjoyed his Christmas, presents included.  He wasted no time putting on his new Canada maple leaf  shirt. (Conor loves the Canadian flag and maple leaf).  Dad was very happy to receive a Christmas card and gift from my buddy.

autism

Lopez-Duran: Recent Autism Increases Are NOT Due to Different Diagnostic Criteria

Nestor Lopez-Duran PhD is a clinical child psychologist and researcher, currently working as an Assistant Professor of Psychology at the University of Michigan. Lopez-Duran also authors the Child Psychology Research Blog which purports to offer research based commentary on child psychology. Professor Lopez-Duran takes A closer look at the new CDC autism prevalence rates and draws a number of interesting conclusions:

- The same diagnostic criteria was used in 2002 and 2006. The changes are NOT due to differences in diagnostic criteria.

 .....

  

Within State variability is so great that it is very likely that fluctuations in prevalence between states are due to methodological differences.

- HOWEVER, significant increases were also observed between sites that did not have changes in methodological procedures between 2002 and 2006.

- Thus, the increases from 2002 to 2006 are unlikely to be due to methodological differences

- There were no major changes from 2000 to 2002, which highlights the significance of the changes in diagnoses from 2002 to 2006

Professor Lopez-Duran, as always, provides some of the most disciplined, objective, non-ideological, non-agenda driven autism research commentary on the internet.  In his comments he expressly refrains from drawing any conclusions about WHY the prevalence rate of autism increased from 2002 to 2006.  His analysis is most important to the various autism causation debates  in highlighting the fact that changed diagnostic criteria are not factors in the recent autism increases reported by the CDC.

Those who deny that autism is rising, particularly those with access to influential mainstream media outlets to express their views, and those internet bloggers who claim to be "science" bloggers,  should discontinue their repeated knee jerk reliance on changes in diagnostic criteria dating back to 1993-4 to explain why autism is rising. 

autism

More Weak Autism Intervention Journalism from the New York Times

The New York Times is not exactly a "go to" resource for well informed, objective discussion of autism interventions.


In October 2008 it presented a slanted article on DIR/Floortime. In that article the guest author praised DIR/Floortime as a new modern improved form of autism intervention without mentioning the lack of scientific evidence in support of of the DIR/Floortime approach. The article also made  unsubstantiated derogatory comments about ABA as "rote learning".

With its coverage of the recent ESDM study the NYT has done it again.  In an article today Raising I.Q. in Toddlers With Autism Tara Parker-Pope praises the results of the Denver ESDM study of a group of 48 autistic toddlers  "showing substantial gains in I.Q. and in listening skills after two years of therapy".  This time the NYT makes no derogatory reference to ABA.  Instead while praising the ESDM approach the NYT fails to mention that the  approach employs principles of Applied Behavior Analysis as set out in the AAP journal Pediatrics article:

"Forty-eight children diagnosed with ASD between 18 and 30 months of age were randomly assigned to 1 of 2 groups: (1) ESDM intervention,which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years"

For reasons that are not clear the NYT simply has a hard time when it comes to being objective about ABA as an autism intervention.  Given the large readership and influence of the NYT that is most unfortunate.

autism

Autism "Is What It Is", More Silly Neurodiversity Nonsense from Kev

Kevin Leitch is up to his usual nonsense.  This time, at Opposing Views,  he asks whether "autism is a disability" and he gives his helpful answer that "autism is what it is, like the colour brown or the shape of a circle.  My reply to Mr. Leitch's silly comment on OV, edited slightly, follows:

"Kevin Leitch has asked whether "autism" is a disability. After asking this silly question he then gives a silly answer - autism is what it is, like the colour brown or the shape of a circle. His answer is meaningless.

For persons with mild Aspergers Disorder their "autism" may not be a disability.  For one of the 80% of persons witth Autistic Disorder who are intellectually disabiled and have communication deficits, their Autistic Disorder is obviously a disability.

For a child who wanders away to freeze to death in a  snow storm, or into automobile traffic or drowns in  local swimming pool,  autism is a disability.  For a child who bites his hands and wrists, chews the  cheeks of his mouth, starves himself to death because of extreme aversion to food tastes and textures autism is a disabililty. For the autistic adults who live in institutional  and residential care autism is a disability.  For the 80% of persons with Autistic Disorder who are intellectually disabled, autism is a disability.

Even Michelle Dawson, the former Canada Post employee, now an "autism researcher",  has acknowledged that autism is a disability when she filed a human rights complaint on the grounds of disability when CPC discriminated against her and harassed her on the grounds of her disability - her autism. The Canadian Human Rights Tribunal found that Ms Dawson had been harassed because of her disability - her autism disability.

"[2] In her complaint, dated August 9, 2002, Ms. Dawson alleges that the Respondent discriminated against her on the basis of disability, in breach of section 7 of the Canadian Human Rights Act in that it failed to accommodate her disability (autism). Ms. Dawson further alleges that the Respondent subjected her to harassment on the basis of disability, contrary to section 14 of the Canadian Human Rights Act."

"[220] The Tribunal thus finds that Ms. Dawson's disability was an important factor in the way she was treated by the Respondent in relation to the above mentioned events and that the Respondent's conduct amounts to harassment and contravenes section 14 of the Act. "

Dawson v. Canada Post Corporation, 2008 CHRT 41 (CanLII) — 2008-10-03
Kev Leitch's question about whether autism is a disability is  asked without reference to the hard realities facing many autistic children and adults.  It is asked without reference to legal findings that autism is a disability.

Kev Leitch's question whether autism is a disability "is what it is", like the colour brown, or the shape of a circle, the question ,and Kev's silly answer, are absurd nonsense.

autism

Autism and Intellectual Disability: Yet Another Article Claiming Shakespeare Was Autistic While Ignoring Intellectually Disabled Autistic Persons

While the mainstream media and prominent on line sites ignore the existence of the 80% of persons with Autistic Disorder who are intellectually disabled they love to talk about how talented individuals and historical geniuses were autistic or displayed autistic traits.

In Research Reports Link Between Handwriting and Autism Digital Journal manages to reference actor Dan Akroyd along with talented historical figures including Shakespeare, Lewis Carroll and George Orwell as displaying autistic traits:

"Great writers such as Lewis Carroll and George Orwell were found to have characteristics now associated with autism yet had significant language abilities ... Autistic children often exhibit behaviors that other people might find curious or even alarming, however the young child flapping his hands today may be the century's next Shakespeare, as research has noted the discrete abilities exhibited by autistic children beyond fine motor skills. "

It makes for good copy to claim that Shakespeare, Carroll and Orwell were autistic.  Meanwhile there is no mention of the unknown autistic people living in institutions and residential care facilities  in states and provinces across North America and around the world.  The 80% of persons with Autistic Disorder and Intellectual Disabilities remain the Invisible Autistics.

autism