Autism? Florida IT Autism Prof Says: Hakuna Matata!

Dr. Ivy Chong, Florida Institute of Technology

It seems to be impossible for anyone connected with the Mainstream Media, the MSM, to speak honestly and accurately about the natue of autism disorders.  Even Dr. Ivy Chong of the Florida Institute of Technology whose site lists her impressive autism resume feels compelled to paint a pretty picture of autism disorders and ignore the harsher realities as shown in the following excerpts from her interview by Matt Reed at Florida Today:

To learn more about the mysterious disorder, I interviewed Dr. Ivy Chong, director of behavioral services at the Scott Center for Autism Treatment at the Florida Institute of Technology in Melbourne. Chong is a licensed psychologist and board-certified behavior analyst.

.....

Q:What happens to autistic children when they become adults?

Chong: A person with autism can expect to live a very good quality of life. They can hold jobs. There are some very bright individuals who aren’t even diagnosed with Asperger’s until they get to college, and they do very well. Their level of focus is exceptional in certain topics or courses.

As the children we are working with get integrated and go to school, and we have treatments for social skills and getting jobs, the sky’s the limit.

Professor Chong could have, but did not, mention the 70% of persons with Autistic Disorder and Intellectual Disabilities and severe challenges in daily functioning. She could have mentioned the 30%  of those with autism and epilepsy. Instead she chose to mention high functioning persons with Aspergers some of whom are only diagnosed at university. She could have mentioned the very serious self injurious behavior issues, wandering, drownings and traffic deaths of those severely autistic who do not understand how the world works but she did not. She could have mentioned the uncounted numbers of severely autistic adults living with parents, in group homes and in institutional care, but she did not.  

Just more feel good buzz about autism the beautiful and nothing about those who are most severely affected by autism disorders.  Just the usual omission from our public consciousness of the invisible autistics, those in greatest need of our attention and assistance.  From a MSM outlet like Florida Today? Par for the course. From an accomplished, experienced BCBA certified director of an autism treatment center? Very surprising.

Hakuna Matata! It's a problem free philosophy!

Discrimination by Any Other Name: Severe Autism Services and Resources Lacking, Severe Autism Research is Sparse

I have not been a big fan of the New York Times coverage of autism issues.  Specifically the NYT has downplayed  the seriousness of autism disorders. It has also downplayed the evidence based effectiveness of Applied Behavior Analysis as an autism intervention while promoting non evidence based interventions like Floortime. It comes as a pleasant surprise to read a recent NYT autism  feature in which experts, Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, actually provided some unvarnished, truthful statements about severe, Low Functioning, autism realities even if that information was hidden under the feel good, High Functioning Autism focused title College-Bound and Living With Autism:

"Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors."

( Underlining added for the benefit of those who like to "Counter" any mention of severe autism realities)

The lack of services and resources for the severely autistic is a particularly offensive form of discrimination which sees those most in need of services receive the least help from society. The exclusion of low functioning autistic persons from autism services and resources stinks whatever the excuse offered.

The exclusion of severely autistic subjects from "autism" research is something I have previously noted.  The spate of recent fMRI studies mapping the alleged "autistic brain" have in fact been restricted to subjects with High Functioning Autism only. 

It is very encouraging to see this frank acknowledgement by two autism experts in the New York Times of the shortchanging of low functioning autistic persons that has been taking place.

It is most encouraging to read that the US federal government has identified severe autism research as a high priority  area in autism work.  

Autism Interventions: New York Times, Once Again, Pushes Non Evidence Based Floortime And Ignores Evidence Based ABA

The New York Times is at it again ... pushing Floortime as an autism intervention ... without mentioning the lack of scientific, empirical evidence in support of its effectiveness. In A Child Psychiatrist Talks About Autism the NYT features a column by Dr. Joshua D. Sparrow which promotes Floortime as an intervention for autistic children and encourages parents of autistic children to consider Floortime as an intervention for their children. (And of course, as usual with the NYT there is no mention of the solid base of evidence in support of ABA as an autism intervention):

"One promising treatment for such children is Floortime, a developmental, individualized and relational approach.

After a careful assessment of the child’s unique profile, therapists and parents using the Floortime approach work together to help the child learn to handle sensory stimulation while gradually interacting in more complex and rewarding ways. The goal is to help these children engage in meaningful relationships, expanding their capacity for communication, understanding and complex, abstract thought. One of the keys is to find the child’s motivation, and to use it as fuel for this work. Another is to make the work rewarding by making it fun and pleasurable for child, parent and therapist. But it is hard and time-consuming work, and families of children with autism spectrum disorders deserve all the support we can possibly give them. Experience has shown that children with autism who are given the support they need are able to expand their abilities to relate, to learn and to communicate, especially with their loved ones.

...


For more on autism spectrum disorders and Floortime, see the International Council on Learning and Developmental Disorders Web site.


Among the many helpful and hopeful books on autism spectrum disorders are those by the late child psychiatrist Stanley Greenspan and the psychologist Serena Weider, including “Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate and Think,” and a new one to be published in April by the pediatrician Ricki Robinson, called “Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child.”

The NYT presents this latest Floortime promotional vehicle without mentioning the limited evidence in support of its effectiveness as reviewed by the AAP and the Association for Science in Autism Treatment.

The picture above is from the AAP Publications Retired and Reaffirmed policy page and indicates that in September 2010 the American Academy of Pediatrics Reaffirmed the Clinical Report: Management of Children with Autism Spectrum Disorders. Pediatrics 2007. The 2007 Report described the lack of empirical, scientifc evidence in support of the efficacy of DIR/Floortime as an intervention for autism spectrum disorders:

"The DIR approach focuses on (1) “floor-time” play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate “biologically based processing capacities,” such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures55 ) and a descriptive follow-up study of a small subset (8%) of the original group of patients.59" 

(page 1165)

The following information is currently found on the ASAT web site and indicates that Floortime is plausible but essentially untested.

Association for Science in Autism Treatment


Developmentally-based Individual-difference Relationship-based intervention (DIR)/Floor Time


...

Research Summary: DIR is widely considered to be a plausible intervention approach (i.e., one that could be effective), but it has not been evaluated in peer-reviewed studies with strong experimental designs (National Research Council, 2001). An uncontrolled study reported favorable outcomes (Solomon et al., 2007).

Recommendations: An important area for future research is to evaluate DIR in studies with strong experimental designs. Professionals should present DIR as untested and encourage families who are considering this intervention to evaluate it carefully.

It isn't clear to me why the NYT pushes Floortime, a non evidence based autism intevention, and ignores ABA,  the most evidence based intervention for autism, as reviewed for several decades by authorities from the US Surgeon General, to state agencies in Maine, New York and California to the Association for Science in Autism Treatment to the American Academy of Pediatrics. I have to assume that the personal biases and prejudices of senior health editors at the New York Times lie behind this persistent attempt to promote non evidence based autism interventions and ignore or put a negative spin on ABA.  I can think of no other reason, rational or not, for the NYT's  misguided autism intervention reporting.

It's OK, It's Politically Correct to Stigmatize Persons on Intellectual Disabled, Low Functioning End of the Autism Spectrum

"The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

...

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

...

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

NYT Times Op-Ed, Disorder out of Chaos,  February 9, 2010, Roy Richard Grinker, Anthropologist,  father of a daughter with Asperger's

The stigma of autism is fading fast for those with Aspergers disorder who, by definiton, do not have intellectual disabilities, and who can be quite successful in many fields of endeavor.  The original stigma against those with autism who are intellectually disabled continues and is in fact promoted by people like Professor Grinker who essentially argue that persons with Aspergers should not feel stigmatized by inclusion in the autistic disorder category in the DSM 5 because we know that people with autism are really quite intelligent.  The stigma feared by those with Aspergers who express concern, and spokespersons like Grinker,  is clearly the stigma of being associated with the intellectually disabled.   

The NYT and Professor Grinker do not urge anyone to refrain from such fears  on the basis  that there is nothing wrong with being placed in a disorder category with persons with intellectual disabilities.   Instead,  in 2010 they try to imply that persons with autism disorders don't really have intellectual disabilities at all.  This is a falsehood, perpetuated by successive revisions of the DSM including the DSM 5.  In 2010 it is OK, it is in fact politically correct to stigmatize the intellectually disabled members of the autism spectrum in order to make some persons with Aspergers feel comfortable about formal inclusion in the autistic disorder category.

Professor Roy Richard Grinker, and the New York Times which gave him their podium, assert that autism disorders are disorders only in the sense that persons carrying an autism disorder diagnosis are socially awkward.  They make light of the very harsh realities faced by persons with severe, low functioning autistic disorder diagnoses.  While Professor Grinker,  with a high functioning, intelligent, if socially awkward daughter, feels comfortable in assuring us that "people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s"this father of an intellectually disabled, low functioning 14 year old boy with severe Autistic Disorder does not buy what the Professor is selling.  Professor Grinker's opinion, rosy at it is, informed as it is by his high functioning daughter's Asperger's Disorder, is not substantiated by professional literature or anecdotal evidence concerning Autistic Disorder.

I  know first hand the realities of living with, raising and caring for a severely autistic child, now well into adolescence.  As an advocate I have represented parents of severely autistic children trying to cope with the realities of severely autistic children while the good professors and others who promote autism as a strength prattle on with their powerful media megaphones like the NYT in hand.  As an advocate here in New Brunswick, Canada I have visited with severely autistic persons living in psychiatric hospital facilities.  The good Professor's rose colored,  Autism as Asperger's, glasses obscure his understanding of the harsher realities faced by the severely autistic to the detriment of those most severely affected by autism who need society to understand those realities before their lives can be changed for the better.

The Professor apparently doesn't follow news of autism as closely as he follows news of Aspergers.  If he did he would know of people like  Keith Kennedy lost in mid-west woods for a week, James Delorey who wandered off to his ultimate demise in a Nova Scotia snow storm, the child who died in a neighborhood pool recently,  the young man arrested by police at a  hospital that refused him admittance because of his autistic behavior  who informed the arresting officer that he was a good boy,  and those who are lost in local traffic . Or he might know of those severely autistic children like my son Conor who was fortunate to survive a busy neighborhood street because a truly good Samaritan stopped his vehicle before traffic stopped my son's life and took him to a local convenience store where I was able to locate him, whole and healthy with chips and candies in hand,  after calling 911.  

If the good Professor knew the realities of severe autism disorders he would know of the middle aged woman living in a New York residential facility who was  repeatedly, severely and physically abused by staff until caught on camera and saved by a conscientious staffer.  The  abuse had gone of for some time but the woman, severely autistic, was unable to communicate her situation to the facility and may not have known she could do so.  

The myth that even non-verbal autistic persons have Aspergers like intelligence is promoted in stark defiance of the professional studies done to date.  The Canadian Psychological Association, which embodies in its membership at least as much knowledge of the autism spectrum as that which can be attributed to Anthropology Professor Grinker,  stated in its 2006 Canadian Senate submission that ""Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average"  The  CPA figures, which expressly included only autism and excluded  Aspergers from the 80% figure,  mirror very closely two successive surveys conducted by the CDC in the US.  CDC  Autism and Developmental Disabilities Monitoring (ADDM) Network gathered data in  2004 and 2006  that indicated between 41 and 44% of persons on the autism spectrum (including persons with Aspergers who, by definition are not intellectually disabled or cognitively impaired) also suffered from intellectual disability.

Professor Grinker, proud father of a daughter with Aspergers,   does not mind reassuring people with Aspergers that their inclusion in the DSM 5's autistic disorder category will not result in their stigmatization by association with intellectually disabled persons with autistic disorder.  This proud father of an intellectually disabled son with autistic disorder does mind.  I mind very much and I strenuously object to this  stigmatization of intellectually disabled autistic persons like my son.  For me, such stigmatization is not politically correct.  It is offensive and  unacceptable.  

New York Times Glosses Over Anti-Cure, Anti-Family Positions of Obama Disability Nominee Ari Ne'eman

I do not pretend to be a fan of the New York Times  autism coverage but I acknowledge that its article on Obama disability nominee Ari Ne'eman gets it ... about  half right and for that  this humble autism dad awards the NYT a D-  grade.   I must admit that  the NYT made a better effort than usual in  providing some semblance of objective balance before telling parents what autism is all about in Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism.  But the NYT still fails to demonstrate actual knowledge of an important autism research issue and fails to acknowledge the biggest issue of all ... the right and responsibility of parents to represent the interests of their children;  not some stranger with no professional expertise and little in common with their children.

The NYT does gently acknowledge, while down playing it somewhat,  that Mr. Ne'eman is a high functioning young university student of obvious intelligence and  excellent communication  and organizational abilities unlike many of the severely autistic children and adults on whose behalf he claims to speak.  He can, unlike  severely autistic persons like my son, operate smoothly  in the worlds of  high powered Washington politics and  the ultra influential New York media . What the NYT fails to fully address is the fact that Mr. Ne'eman purports to speak on behalf of other people's children and that he does not show respect for the role of parents in raising, caring for,  and representing the best interests of their children..... unless of course they agree with his views of what is best for their own children.  

The NYT also presents Mr. Ne'emans simplistic and erroneous views about autism research.  It is true that most autism research is genetically oriented.  Public health authorities that influence autism research funding decisions have insisted on genetically based autism research for more than a decade as described by Teresa Binstock who called that mindset the "It's Gotta Be Genetic" model of autism.  What the article misses by quoting Mr. Ne'eman's views of autism research is the growing push for environmentally based autism research and for treatments and cures other than termination of  "high autism risk" pregnancies.

Dr. Jon Poling, neurologist,  is one of  the most famous and well informed parents who has advocated for exploring environmental causes of autism ... and for seeking treatment and cures.  His comments in the Atlanta Journal Constitution present a much more complete and informed views of the direction that autism research should go than the narrow perspective offered by Mr. Ne'eman and the NYT:

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

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

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

Dr. Jon Poling, Atlanta Journal Constitution, March 13, 2009

The NYT cites Mr. Ne'eman's reduction of autism research to research aimed at  pre-natal detection of autism that could lead to early terminations of pregnancies in cases of suspected autism.  Mr. Ne'eman may honestly believe that parents and others seeking causes and cures for autism are so narrowly focused but it is inexcusable for the New York Times to present that view without providing more information about autism research to the public.  Without getting into the views of different camps in the autism wars the NYT could at least have told its readers around  the world about the IACC's strategic autism research plans readily available on line at:

The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010

The introduction to the IACC strategic plan states:

It is imperative that resources be devoted to research commensurate with the public health need. Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation; development of improved ASD diagnostic approaches and treatments; and science to enhance the level of services and supports available to people with ASD, their families and caregivers. With current scientific knowledge and tools, we have unprecedented potential for discoveries that will improve the quality of life for people with ASD.

When Mr. Ne'eman tells the world that WE don't want to be cured he purports to speak on behalf of  all persons with autism disorders including the severely disabled. When Mr. Ne'eman protests a video by parents describing autism from their perspectives as parents of severely autistic children he is opposing their right to speak on behalf of their children. When he protests Autism Speaks he is opposing efforts to increase autism awareness and raise funds for autism research goals supported by many parents and families with autistic loved ones.

Hopefully some day the NYT will have an epiphany and come to understand that Mr. Ne'eman opposes the right and responsibility of parents of children with autism disorders to seek treatment and cure for their own children.  He is obstructing their efforts to give their children the best, fullest lives they can.  

Hopefully someday the NYT will come to realize its own role in promoting such efforts to interfere with and obstruct the efforts of families trying to help their own autistic children.

Autism Rising in the New York Times

The New York Times has joined those who assert that rising autism rates reflect a real increase in autism and are not explained solely by changes in autism diagnosis definitions and increased awareness:

"In the United States, anti-vaccine groups have advanced other theories since then to explain why they think vaccines cause autism. For years, they blamed thimerosal, a vaccine preservative containing mercury. Because of concerns over the preservative, vaccine makers in 2001 largely eliminated thimerosal from routinely administered childhood vaccines.

But this change has had no apparent impact on childhood autism rates. "

The New York Times argument ,previously advanced by Dr. Eric Fombonne and Dr. Nancy Minshew, only makes sense if it is based on real increases in autism rates. Increases in autism rates after removal of thimerosal from vaccines solely because of diagnostic definition changes and ascertainment factors would not indicate whether thimerosal did or did not play a role in causing autism. 

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 Priorities and the DSM V: Media Ignores Invisible, Severely Autistic in DSM V Discussions

The invisible autistics, the severely autistic, those with Autistic Disorder, profound developmental delays, cognitive and intellectual deficits, those who can not live independently, who live on hospital wards and in large, antiquated psychiatric institutions do not make regular appearances in the New York Times and its junior Canadian cousin the Globe and Mail. Nor do they appear regularly on the various CBC television and radio shows that have fawned over Michelle Dawson, Amanda Baggs and more recently Ari Ne'eman.

In the big, mainstream media discussions, and opinions about the proposed changes to the developmental disorders section in the DSM V nothing has changed. Ari Ne'eman and other barely autistic, very high functioning persons with Asperger's Disorder continue to receive all the considered attention of the big media while the severely autistic remain, as always, invisible. There is scant mention in any of the mainstream media commentaries of those whose lives are most severely restricted by autism disorders. The Globe and Mail breathes hot air about "a culturally rich autism" while ignoring those severely autistic persons living in institutional care throughout Canada.

Plus ça change, plus c'est la même chose

autism

Autism Awareness - Ari Ne'eman Confesses

"My identity is attached to being on the autism spectrum"

Ari Ne'eman, New York Times, Nov 3, 2009

If you ever wondered why some autism self advocacy groups like ASAN, and some self advocacy leaders, like Ari Ne'eman, protest and exert pressure to prevent discussion of the harsher realities faced by low functioning persons with autistic disorder, particularly those with Intellectual Disabilities, you now have the answer.

Ari Ne'eman and some other autism spectrum self advocacy groups who protest realistic depictions of persons with low functioning autistic disorder like to identify with autism but not with those who live in institutional care or otherwise lack their own considerable intellectual, communication, social .... and ... self promotion skills. Parents talking about the harsh realities of their own children's severe autistic disorders just isn't a feel good experience for the very high functioning Ari Ne'eman and other "autism spectrum self advocates".

Fortunately for Ari and company the New York Times, the New Yorker, CBC and other mainstream media are happy to indulge their whims as the NYT almost confessed in A Powerful Identity, a Vanishing Diagnosis :

Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

I say almost confessed because while the NYT points out that Asperger's has exploded into popular culture through books and films it does not mention that media organizations like the NYT, the New Yorker and CBC, also dote on the Asperger's and High Functioning Autism end of the spectrum while ignoring the harsh realities of those with severe Autistic Disorder. The result, with organizations like Autism Speaks bowing to pressure from groups like ASAN, is that the most severely autistic persons remain hidden from public view in institutions or in their parents' homes ... they remain the Invisible Autistics. Meanwhile Mr. Ne'eman, barely autistic, revels in the media spotlight ... his identification with his own self defined autism spectrum intact.

autism

New York Times Examines Autism and the DSM V, From an Aspie Perspective, Of Course

Perhaps the New York Times is about to shock me and publish an article discussing potential changes to the "autism spectrum" of disorders in the DSM V from the perspective of the impact such changes might have on the lives of those with severe autism, from the perspective of low functioning persons with Autistic Disorder, like my son, Conor Doherty. For now though, like almost every mainstream media article or opinion piece discussing the "autism spectrum" it has done so from the perspective of those on the High Functioning end of the spectrum. The NYT mentions, but does not explore, the impact on the more severely affected of proposed changes to the "Autism Spectrum" of disorders in the DSM V.

In A Powerful Identity, a Vanishing Diagnosis the NYT focuses on the possible loss of the "Aspergers" label by inclusion of Aspies in an autism spectrum divided by levels of severity without reference to the Aspergers label. Ari Ne'eman is referenced talking about the importance to him of being on the Autism Spectrum:

"My identity is attached to being on the autism spectrum, not some superior Asperger’s identity. I think the consolidation to one category of autism spectrum diagnosis will lead to better services."

The NYT has, once again, found it within itself to discuss autism in terms of the most fortunate amongst the "autistic", those for whom one of the most serious issues is a question of identification with one label as opposed to another. The NYT, as it and the mainstream media at large, almost invariably do, provides little comment on the lives of the most severely affected by autism disorders, the many persons with Autistic Disorder who are low functioning, some with Intellectual Disabilities, some who do not understand the world in which we live on anything but the simplest level, some with very limited comprehension of language ... some of whom live out their lives in residential and institutional care.

The New York Times did mention that the proposed changes to the DSM will possibly include express description of various conditions which often accompany autism disorders, such as "anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise". The Times studiously avoids any express reference to the persons with Autistic Disorder and Intellectual Disorder. A sure sign of the success of the High Functioning Autism and Aspergers groups efforts to prevent any discussion of autism in connection with intellectual deficits.

The NYT quotes Dr. Temple Grandin on the dominance of the Aspergers advocacy groups in dominating public discussion of autism: The Asperger community is a big vocal community, "a reason in itself” to leave the diagnosis in place. For many parents and family members of severely autistic children Dr. Grandin's comments are not news.

This NYT piece itself reflects the domination of autism in the public mind by Aspergers and High Functioning Autism and the exclusion of the Low Functioning, Intellectually Disabled and severely autistic persons with Autistic Disorder.

Organizations such as Autism Speaks are routinely targeted by the big vocal Asperger community for realistically and honestly depicting the life challenges faced by the severely autistic. An even bigger indication of Asperger community dominance occurred when Autism Speaks "kow towed" to this community and pulled its "I Am Autism" video from its web site.

For the NYT, and for Autism Speaks, it is now far more important to talk about Ari Ne'eman's sense of identity than to talk about the severely autistic children who go missing or those who live their lives dependent on the care of others.

autism

NY Times: Swine Flu Virus Will Not Be Abnormally Lethal

Our own take is this: A swine flu epidemic this fall and winter is likely to infect more people than a normal flu, but the virus will not be abnormally lethal.

New York Times Editorial, August 31, 2009

Not to downplay the tragedy of any death, and the impact on families and friends, but it is difficult to see why world governments have reacted with such panic to the Swine Flu (H1N1) version of the flu, the ordinary versions of which kill people every year. Massive investments of public funds have gone into development of vaccines which are being rushed into production. The NYT editorial points out that only 54 residents of the large population NYC area died in last springs Swine Flu outbreak. And the virus has not become more virulent as it proceeds around the world.

Some of these vaccines are going first to young children and pregnant women. Vaccine's Don't Cause Autism spokesman Paul Offit should watch the outcome of that "experiment". "Adjuvants" of unknown effect will be included in some vaccines AND in the US vaccine manufacturers have been granted liability immunity.

Again, every single death is a real tragedy, and hopefully deaths will be reduced even further by the massive immunization program that the health authorities are pushing. Hopefully too though public health authorities will keep reasonably accurate records of possible side effects of these rushed into production vaccines including the development of Guillain-Barré syndrome, and GBS deaths, as occurred in 1976, and .... any autism diagnosis increases amongst the populations of young children and children born of women who received the Swine Flu vaccines.

autism

Autism's Invisible Adults In the New York Times

Congratulations to the New York Times for running a small guest opinion piece about the fate of autistic adults. The article, Growing Old With Autism, is written by Karl Taro Greenfeld, the brother of a low functioning autistic adult and the author of Boy Alone: A Brother’s Memoir. Mr Greenfeld makes the argument that the focus of autism awareness, fund raising and government response has been almost entirely on autistic children. The result has been a lack of resources in critical areas such as residential care and employment opportunities for autistic adults, particularly low functioning autistic adults.

Mr Greenfeld's brother is in his 40's and is low functioning. I am the father of a low functioning 13 year old who, like many parents in that situation, is struggling to prepare for my son's future. I am pleased to see the NYT devote some attention to this serious situation facing autistic adults, particularly low functioning autistic adults.

Mr. Greenfeld quite correctly points out the emphasis on autistic children in today's autism. awareness. Although he talks about his low functioning autistic brother's challenges he does not address directly another issue confounding the problem for low functioning children now becoming autistic adults - the media misrepresentation of autism disorders as being reflected in the realities of persons with high functioning autism spectrum disorders. By and large the media loves to dote on the high functioning autistic and Aspergian media trotters like Amanda Baggs, Michelle Dawson, Ari Ne'eman and Alex Plank. Few mainstream media features are built around the invisible autistics - the low functioning autistic adults living in institutional care or otherwise living very restricted lives dependant on the care of others.

This father of a teen age boy/young man with Autistic Disorder and profound developmental "delays" says thank you to Mr. Greenfeld and the New York Times for this small step towards reminding the world about the invisible autistics, the low functioning autistic adults, the ones who do not attend university, pose for fashionable photo shots in high powered magazines or run from camera to camera shouting "we don't want to be cured".

autism

Vaccine-Autism War: Teresa Binstock's Prophetic Hunch

The dramatic events of the past two months in the vaccine-autism war were predicted a decade ago by researcher Teresa Binstock in her article IGNAZ SEMMELWEISS and AUTISM: when prevailing paradigms resist change in which she reported the funding bias in favor of genetic based theories of autism causation. She also indicated that studies of potential environmental causes of autism, including vaccines and vaccine ingredients, were unlikely to receive funding. Studies which reinforced the prevailing "it's gotta be genetic" model of autism were favored. Binstock described the health establishment's disregard for parents' observations of their children's reactions to vaccine, the demeaning marginalization of parents and professionals who question the official autism paradigm and the disregard for contrary evidence. Ms Binstock noted that:

"when a medical model becomes institutionalized and its primary spokespersons become set in
their well funded ways, such institutions and individuals strongly resist change"

No medical model is anymore entrenched then the vaccine model of public safety. And few spokespersons are better funded than vaccine patent holder Dr. Paul Offit who has been on a never ending tour promoting his book about what he calls autism's false prophets. There are a number of indisputable good reasons for the entrenchment of the vaccine model: the reduction and near elimination of serious diseases, some of which can kill, are very powerful reasons in support of public vaccination programs. But few systems or models are perfect. Most require adjustment when problems are found.

If vaccines do cause harm in some cases then those harmful, and potentially harmful, effects should be studied and adjustments made. Unfortunately the vaccine programs have been elevated to a sacred level by public health authorities to such an extent that people who ask questions or voice concerns are dismissed as hysterical, as cranks, quacks, charlatans and any number of other pejoratives.

Dr. Wakefield has been the subject of an ongoing investigation by the GMC for several years. Journalist Brian Deer who has had some serious involvement with the laying of charges against Dr. Wakefield has recently published an article in the Sunday Times in which he "convicted" Dr. Wakefield of data tampering. Other imperious journalists like Andre Picard at the Globe and Mail have decreed that the debate over vaccine safety must end now. Imagine, a journalist dictating that free public discussion of public safety issues must end now?

Of course THE primary spokesperson for the entrenched medical model, the entrenched "speak no evil of vaccines model" is Dr. Paul Offit. Dr. Offit is the vaccine patent holder whose genial face, cozy sweaters and "regular guy" flannel shirts appear every other day in a major media interview describing his own heroics on behalf of the children of the world and demonizing the evil parents who have voiced their concerns about vaccines thereby contributing to the growth of disease and death.

In 1999 Teresa Binstock offered the following hunch which has proved prophetic:

My own hunch is that the NIH and NIMH will not change from within; the senior practitioners of the "it's gotta be genetic" model have too much influence. Just as Semmelweiss and his data were suppressed, so too will the NIH/NIMH autism-research insiders continue to act against the the growing body of new data in autism; the NIH's pro-genetic old-timers will cling to their paradigm and its funding. As a result, change within the NIH and NIMH will have to be initiated from outside those tax-supported corporations.

The Institute of Medicine (IOM) Immunization Safety Review: Vaccines and Autism (2004) proved Ms Binstock's hunch to be correct when it expressly discouraged further investigation of vaccine safety. Last month the Interagency Autism Coordinating Committee (IACC) confirmed her hunch as prophecy when it reversed its own decision reached only weeks earlier to authorize funding for research of vaccine-autism connections, research that might have provided the kind of evidence found to be non-existent in the recent Vaccine Court Autism Trilogy.

As Teresa Binstock predicted in 1999 any research of non-genetic causes of autism, including and especially, potential vaccine causes, will have to come from outside the public health establishment. Of course the ability to conduct such research will be further hampered by well orchestrated media campaigns led by Dr. Paul Offit with journalists from institutions like the Sunday Times, the New York Times and the Globe and Mail scurrying about helping to suppress public discussion of concerns which raise any doubts about the deeply entrenched vaccine health model.

Personally it is the suppression of research and public discussion which causes me the greatest concern about the safety of vaccine programs. Ultimately, as the Semmelweis case reviewed by Teresa Binstock shows, the truth will out. In the meantime though some vulnerable children might be harmed by vaccines and vaccine ingredients. harm that might have been avoided with some adjustments. The vaccine program itself will most definitely be harmed by the campaign to suppress research and discussion of vaccine safety concerns.

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Autism and Vaccines: New York Times Promotes Offit Book

The New York Times has a new promotional feature, Book Is Rallying Resistance to the Antivaccine Crusade pushing Dr. Paul Offit's, "Autism's False Prophets" book. The NYT describes Dr. Offit as "mild, funny and somewhat rumpled" so you know where they are going with this one. They focus on Dr. Offit's receipt of death threats and quote him in a self comparison to Jonas Salk.

The NYT also manages to bring the beautiful actress, and Jenny McCarthy debater, Amanda Peet into the story, complete with photo of her in very motherly looking attire. What they don't do is mention the Poling case which put a serious dent in the "vaccines don't cause autism" position. Nor do they mention Dr. Julie Gerberding's acknowledgement that in some cases vaccines may trigger "autism like symptoms". Nor do they mention Dr. Bernardine Healy's (former head of the NIH and American Red Cross) comments calling for more research of a possible vaccine-autism connection, the limitations on the epidemiological studies which are used in defense of the vaccines, the discouragement by health authorities of vaccine-autism studies or the fact that vaccines still contain mercury.

The NYT has taken a stance and it has a right to do so. But it might be more honest to place the article in the opinion or editorial sections of the paper. Or in the advertising pages.

Journalism used to be about objectivity and presenting a complete, balanced summary of all sides of public issues. And the New York Times used to be about journalism.


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Is "New" Autism Theory Much Ado About Nothing?

I have read the New York Times article In a Novel Theory of Mental Disorders, Parents’ Genes Are in Competition about the new theory articulated by Dr Crespi and Dr Badcock but I have to confess that I do not see what all the fuss is about. From what this humble layman can understood the "theory" is really little more than speculation, a simple reorganization of how we categorize or arrange various discrete disorders. It does not appear to be based on any novel research, evidence or observations.

I am not sure if it is properly called a theory but the NYT summarizes it as follows:

Their idea is, in broad outline, straightforward. Dr. Crespi and Dr. Badcock propose that an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways. A strong bias toward the father pushes a developing brain along the autistic spectrum, toward a fascination with objects, patterns, mechanical systems, at the expense of social development. A bias toward the mother moves the growing brain along what the researchers call the psychotic spectrum, toward hypersensitivity to mood, their own and others’. This, according to the theory, increases a child’s risk of developing schizophrenia later on, as well as mood problems like bipolar disorder and depression.

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

What is meant by the NYT 's expressions "tug of war" and "bias"? How do these events occur? And why does the theory have no use for psychiatry's many separate categories for disorders? If persons now described as having schizophrenia, bi-polar disorder or autism consistently exhibit different behaviors and different ways of thinking or understanding the world why should the categories be disregarded?

One of the authors of the theory, Dr. Crespi, states that the implications of their theory are huge.

This humble father of a 12 year old boy with Autistic Disorder, and profound developmental delays, is not so sure.

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Risks of Risperdal and Other Aytpical Antipsychotics In Treating Autism

The New York Times reports on a US government study which finds that the "newer" atypical antipsychotic medicines prescribed for schizophrenia in children and adolescents are no more effective than older, less expensive drugs and are more likely to cause some harmful side effects. The study is expected to be published online on The American Journal of Psychiatry. Serious side effects of the drugs studied, Risperdal and Zyprexa, included rapid, substantial weight gain and changes in cholesterol and insulin levels which are risk factors for diabetes.

The NYT report states there has been a steady increase in prescription of these drugs over the past two decades with 80% of children's prescriptions to treat something other than schizophrenia, like autism-related aggression, bipolar disorder or attention-deficit problems. 49 % of atypical antipsychotic prescriptions were used to treat disruptive behavior related to autism or A.D.H.D.

Two of the study's authors, lead researcher Dr. Linmarie Sikich and co-author Dr. Jon McClellan, indicate that older, milder medications should be considered as first line treatments and new therapies developed.

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Study Shows Antipsychotic Drugs Offer No Benefit in Curbing Aggression

In Drugs Offer No Benefit in Curbing Aggression, Study Finds the New York Times reports the results of a study to be published today in the Lancet which tracked intellectually handicapped adults over more than a month of treatment. There was a 79 per cent reduction in aggressive behavior among those taking placebo pills. The group taking antipsychotic drugs saw a 65 percent or less reduction in aggressive behavior. The better results of the placebo group was attributed by one of the lead researchers to the extra attention the group members received during the study.

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication.

In an interview, Dr. Tyrer said there was no reason to believe that any other antipsychotic drug used for aggression, like Zyprexa from Eli Lilly or Seroquel from AstraZeneca, would be more effective. Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said.

The NYT notes that the study sharply challenges standard practices in mental health clinics and nursing homes around the world.

Don't be surprised if researchers for the major pharmaceutical companies come out with studies soon to contradict or minimize the Tyer group's findings. Risperdal is used to treat aggression in people with a variety of mental health conditions including autism.

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Autism and Rotenberg's Unanswered Questions

In Parents Defend School’s Use of Shock Therapy the New York Times has revisited the Judge Rotenberg Education Center's use of aversive therapies, particularly the "shock" therapy, a mild two second bee sting style of shock, used in treating children with severe aggressive, self injurious even self mutilating behavior arising from autism and other disorders. Many scientists, therapists, politicians, bureaucrats and internet bloggers have condemned the Rotenberg center's use of aversives. But The New York Times goes beyond the Mother Jones breathless expose approach to these issues and presents the perspective of Susan Handon and other parents whose children have benefited from aversive therapy and who have even obtained a court order so they could continue to send their children to the Rotenberg Center for treatment.

Why are parents fighting to keep their children in a center which subjects them to a form of shock treatment? The NYT describes some of the reasons children are being treated at the JREC:

"Rotenberg is full of children who will run up and hit strangers in the face, or worse. Many have severe types of dysfunction, including self-mutilation, head banging, eye gouging and biting, that can result from autism or mental retardation. Parents tend to be referred there by desperate education officials, after other institutions have decided they cannot keep the child."

The Rotenberg's effective use of aversive therapy in addressing such serious issues poses a challenge to the world to provide an effective alternative treatment. The parents who send their children there can not be easily dismissed as Ms Handon has shown. Insults and political correctness will not address these issues.

If an effective aversive treatment is going to be taken out of the hands of the Judge Rotenberg Education Center what will replace it? Ineffective drugs, physical restraints? Purely positive interventions even if ineffective? If the political correctness crusaders prevail will they accept responsibility for children with autism and other disorders who then go on to engage in self mutilating behavior and aggression to others?

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Autism Vox Tells The NYT PART Of the Autism Story

In reaction to a provocative public service advertising campaign which highlighted some of the negative realities of autism and other mental disorders, Kristina Chew of Autism Vox did what she does day in and day out, she told part of the story of autism. In Campaign on Childhood Mental Illness Succeeds at Being Provocative Ms Chew gave the New York Times the "let's all feel good, say nice things, and sing Koombaya" part of the story of autism and she expressed indignation and outrage on behalf of parents of special-needs children, autistic adults, teachers, disability rights advocates and mental health professionals about the negative picture of autism presented by the campaign.

At Autism Vox Ms Chew rarely mentions any of the negative realities that actually result in autism diagnoses or that impair the lives of so many autistic children and adults and the family members and caregivers who love and care for them. Any expression of those negative realities whether it be the Autism Every Day video or the campaigns by people such as Jenny McCarthy to cure autism are met with hostility, scorn and ridicule at Autism Vox.

The campaign that Ms Chew attacks with her efforts is a campaign to help children with psychiatric disorders. In the Autism Vox Universe it is people trying to help children by telling the truth who are the enemy. In fact it is the truth that is the enemy at Autism Vox. And WHO are the real people behind the campaign? It is not NYU. It is those people who speak the truth about their children's conditions - honest, caring parents. It is they who inspired the campaign attacked by Ms Chew:

"According to Dr. Koplewicz, the campaign was inspired by filmed conversations of parents and children talking about life with a psychiatric disorder. “These families felt their children were trapped by their disorders,” he said.

John Osborn, the president and chief executive of BBDO New York, said the effort was intended to increase the sense of urgency about the diseases and encourage conversation. “It’s tricky because there are a lot of messages in the air, particularly at holiday time. That makes it a challenge to cut through the clutter.”

BBDO’s earlier ads for the Child Study Center — which included images of a child running happily through a sprinkler and a drawing of a child caught in a maze — “were wonderful, but they didn’t get this kind of attention from anyone,” Dr. Koplewicz said. “They were too pleasant and innocuous. That’s the reason we decided to go along with BBDO.”

He was further emboldened, he said, by the reaction of focus groups of women whose children have the disorders mentioned in the ads. “Everyone who participated felt the ads were informative,” he said. “While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.

Thankfully the New York Times told both sides of the story. My son has Autism Disorder. He is severely autistic. I have a duty to speak the truth about his disorder, a sense of duty not on display at Autism Vox where parents speaking the truth are treated with contempt and outrage. It was encouraging to see the NYT present an explanation for the campaign.

Some day it might dawn on Ms Chew that parents speaking the truth about their children's autism disorders actually love their children every bit as much as she does, that we find joy in our children every single day of our time together with them. But unlike Ms Autism Vox we also understand that time IS in fact the enemy for most of our autistic children, that many WILL live their lives dependent on the cares of others, especially after we are gone. We live with the realities of self aggression and aggression to others. We live with the realities of ever present danger to our children presented by every day life. And we try to do something about it, for our children and for other autistic children and adults. And we do something rarely done at Autism Vox we speak the whole truth about autism

Ms Chew bragged to the New York Times about the 3,000 to 4,000 daily visitors to Autism Vox. What she failed to mention were the hundreds of thousands of parents across the United States and Canada fighting to treat and cure their autistic children, parents who, on behalf of the children they love, speak the truth, the whole truth, about autism. And like the campaign organizers at NYU we know that the facts of autism are more upsetting than the provocative imagery used in the awareness raising ransom notes campaign - for most of us anyway.

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