Tuesday, July 27, 2010

I Don't Understand HOW This Could Happen: Autistic Man Dies Horrible, Needless Death in Hot Van

 I don't understand how this could happen.

The Trentonian reports that a 20 year old autistic Middleton, Pennsylvania, man, living in a residential facility was found dead in the back of a hot van. He had attended an outing with three other residents and two counsellors, each counsellor responsible for only 2 residents. How could a person forget and leave one of only two persons in their care in a hot van? The matter is under investigation but what could possibly explain this result?
I just don't understand.

"Police detectives are investigating the tragic death of an autistic 20-year-old client who had returned to the Woods Services residential facility from Sesame Place and was found dead hours later in the back of the Woods’ van.

The New York man had apparently been left inside the van from about noon until 4 p.m. Saturday when a nurse seeking to dispense his medication couldn’t find him, police said.

“The nurse and other personnel initiated a search of all the local buildings with room to room searches until a supervisor started checking the vehicles and found the client deceased in the back of the van that he had been transported to Sesame Place in,” police said in a press release.

“No names are being released at this time due to the sensitive nature of the ongoing investigation and in deference to the family of the deceased.”

Woods Services is a residential facility for people with exceptional needs. Middletown Township Police responded as well as Penndel Middletown Emergency Squad, which confirmed that the client was deceased.

An investigation is under way to determine if there is any criminal liability involved, police said.

The deceased had made the trip to Sesame Place in the morning along with three other clients, accompanied by two residential counselors each being responsible for two clients."

Sunday, July 25, 2010

Texas Autism Filicide: A Mother of an Autistic Child Provides Perspective and Sound Advice

It is very difficult to read each and every news account of filicide, the killing of a child by his or her parents.  Sometimes the killings flow from bitter, nasty domestic relationships.  In some, perhaps most, the parents involved had mental health issues.  Each instance has to be examined on its own set of facts and, given the nature of the act,  by the appropriate legal and mental health authorities.  We should all be extremely careful not to make sweeping generalizations based on the personal characteristics of the individuals involved in a particular case. 

This week there are news reports of a Pakistani-American woman in Texas who strangled her two autistic children and , as reported by the Dallas Morning News, informed 911 operators that she did so because they had autism and she wanted normal children.  In the internet world of autism discussions such a  tragic event  feeds into many issues, and much hostility,  on all sides of the various autism perspectives.  There is also a danger that the tragedy could feed into feelings of hostility held by some people towards people of Muslim faith since September 11 2001 although most news reports I have read of it, including the DMN article just  referenced, do not mention the mother's religion.

I found it very  helpful  to read the wise comments on this tragedy by  the Muslim mother of an autistic child on the blog site My Autistic Muslim Child in a post called Support and Responsibilities in which the author references the accused mother's Muslim religion and asks people not to characterize Islam  based on one person's actions, urges us to consider the mental health challenges of the mother who killed her children, without making excuses for her actions,  and points out the need for autism support systems,

I recommend this article by the author of My Autistic Muslim Child for its balance, sensitivity and wisdom and because it is written by some one who is also both a Muslim and the mother of an autistic child.   It is difficult to quote from this article without quoting the entire article so I ask you to read it  for yourself.  I will quote the two concluding paragraphs where the author talks about the need to get at the root of the problem:

"We have a serious problem in our society, and people of all religions and ideologies must work together to stop the violence against children with autism or other disabilities. We need to educate our communities about this issue, and make them understand that such crimes cannot be justified by any religious teachings.

Also, we must create a support system for our communities, so if they do not receive any support from their families (which is the case a lot of times too for different reasons), then they have an outlet to which to go and acquire the much needed help from others. Our religious facilities must have an adequate and functional social service program to help the needy. The finger-pointing must stop, and we need to admit this problem is OUR problem, not just isolated, random incidents. Once we reach this understanding, we have a good chance to work together as a society and get to the root of the problem so as to prevent a tragedy like this to happen again."

Saturday, July 24, 2010

Rowing to Italy - A New Autism Blog You Should Follow

Blogs, including autism blogs, come and go. There are many out there.  I am very pleased to give a shout out for Rowing to Italy a new autism blog by a personal friend, Charlotte Robinson-Rocca. 

Charlotte is a dedicated mother and an autism therapist who  has been a major player in New Brunswick autism advocacy over the past decade. In addition to providing autism interventions to her own autistic children,  she has also worked with  other autistic children in New Brunswick.

I am not going to get too specific in my description of Charlotte.  When Charlotte sees a problem to be fixed or a challenge to be addressed she does so and she does it well.  I will guarantee you that  she is a force to be reckoned with. Many fellow  parent autism advocates and some current and former New Brunswick politicians will smile knowingly at my comment.  

I will also guarantee you that the autism "blogosphere" has just been changed ... for the better.

Sunday, July 18, 2010

Facing Autism Reality Is Not A Choice; It Is A Challenge That Must Be Faced

Facing autism reality is a huge challenge.  It is difficult on a good day. But it is not a choice. It is what must be done or autistic children and adults will suffer.  

In the case of parents our children will suffer if we do not face autism reality head on, acknowledge what we do know about autism as it manifests itself in our children and deal with it, each and every minute of each and every day. We know that in most cases autism, despite the Hollywood movies, and the success of high functioning exceptions, means a lifetime of dependency, residential and even institutional care.

As a parent  of a 14 year old son with Autistic Disorder and Intellectual Disability,  I do not have a  choice to NOT face autism reality every single moment of every single day.  I have written on this site, and provided pictures. of self inflicted bite marks on my son's hands and windows in our house broken by those same hands.  I have written about the time several years ago where we could have easily lost our son, who we love dearly, because I was distracted by a telephone call and was unaware that Conor had slipped out of the house across a parking lot and main street busy with automobile traffic that he did not know how to negotiate.  I have written about the incredibly intense fear and guilt that I felt arising from that event. and from my failure, on that day, to do the very best that I could for my son.   I have posted many pictures and told many stories on this site about the great joy that Conor brings to our lives each and every day. Some of those pictures are posted on the side bar of this blog.
So what do we know about autism or more accurately about autism disorders? We know that in most cases of Autistic Disorder autism is a disorder which severely limits and restricts the abilities and opportunities to enjoy life of those who suffer from it.  We know that for those with Autistic Disorder serious communication and behavioral challenges must be faced. We know, to quote CDC autism expert Dr. Marshalyn Yeargin-Allsopp, that the "vast majority" of those with the original Autistic Disorder also suffer from intellectual disability.  We know that that two recent surveys by the CDC reported that in fact 41-44% of ALL persons on the autism spectrum suffer from intellectual disability a figure which is watered down below the majority line by the fact that the Autism Spectrum includes persons with Aspergers who, by diagnostic definition ,are not intellectually disabled or cognitively impaired. 

In terms of treatments we know that the intervention that enjoys the most evidence in support of its effectiveness is and has for many years been Applied Behavior Analysis or ABA. We know that there may be other treatments and interventions that are helpful in treating autism that have not been researched well enough to provide the evidence base required for widespread acceptance by the public health authorities.  We know that parents facing the challenges of helping their autistic children have tried various methods including biomedical interventions and report significant improvement in their children.  We know that as parents their observations opinions are given little or no weight by "scientists" for whom direct observation has been replaced in the scientific method by  sometimes flawed epidemiological studies and by personal attacks on parents whose observations are inconsistent with scientific consensus.

In terms of autism research we know that our knowledge of what causes autism disorders has been held back by an almost cult like, unscientific and obsessive belief that autism is 100% genetic. We know that funding for research has for decades been dedicated overwhelmingly towards genetic focused autism research with little to show for it. We know that funding for autism research has been directed away from possible environmental causes of autism, and of course away from assignment of responsibility for any possible toxins whether injected, swallowed or breathed into our lungs which might have contributed to or caused neurological damage in our children. Better to blame the parents' genes or age then to admit that maybe corporate self interest or governmental negligence might bear some responsibility.

Those of us who are parents know that life will not be rosy for many of our children severely affected by autism disorder no matter how many Hollywood movies are made portraying autism as a gift and no matter how many well connected, barely autistic, inexperienced in life university students  are appointed to US government committees. Subscribing to nonsensical, autism is beautiful ideology will not help our autistic children.

As parents we know that we must face autism reality by doing our best to help our children overcome their autism challenges and the self interest driven misrepresentation of autism that dominates public consciousness of autism.  As parents we know that we do face autism reality every day and that we do our best to help our children even if , as I did that day my son left our house and faced the dangers of automobile traffic, we sometimes fail.

In facing autism reality we must also keep in mind that there are those who help us along the way. My son has benefited from educators who have accommodated him in our neighborhood schools and who have worked hard to understand his challenges and worked with him. The teacher assistants who have worked with my son have been a blessing.   My son, and many other autistic children in New Brunswick, have benefited from people like Dr. Paul McDonnell a clinical psychologist who directly educated and guided many of us as parents and worked directly with autistic children.  Many autistic children have benefited here in New Brunswick from the caring and dedicated professionals at the Stan Cassidy Rehabilitation Center autism team and from the UNB-CEL Autism Intervention Team and Ann Higgins.  Even politicians have, here in New Brunswick, Canada,  been very helpful with both major political parties instituting positive changes while in office.

I know personally that even strangers  will sometimes help.  On the day Conor wandered out of the house and into potentially deadly automobile traffic a gentleman stopped his vehicle and helped him into a nearby convenience store where, after calling 911,  I found him safe and sound.  The man who brought Conor into the store waited until I arrived and then turned and walked away without identifying himself.   

Facing autism reality is a challenge but it can be done if we are honest about it and do not subscribe to  Neurodiversity ideological nonsense  that make us feel better but does little to actually help those with autism disorders.  It can also be done by researchers and public health authorities if they choose to abandon the "it's gotta be genetic model" for funding autism research and dedicate more research dollars towards finding causes, treatments and cures for autism disorders.

Friday, July 16, 2010

Utah Study Misrepresents Autism Disorders, Report Includes Only Top 10% Highest Functioning Autistic Study Subjects

Wow, talk about your blatant misrepresentation of autism disorders.  A Utah study has followed the lives of 400 persons with autism since the 1980's in an effort to understand their quality of life as adults.  Except that well ... the study only reported on the top 40, or top 10% highest functioning members of the study group:

"Last year’s study – written by researchers at the U., Carmen B. Pingree Center for Children with Autism in Salt Lake City, McGill University in Canada, Los Angeles Medical School and Yale University School of Medicine – offered a rare glimpse into the lives of adults with autism, an understudied population. But it was limited in scope to 41 of the higher functioning participants from the original 1980s study."

Apart from ignoring those autistic subjects who were lower functioning the study only mentions that 20 of the subjects are now dead.  20 seems to me to be a fairly signficant number and a full study of the causes of their deaths as they relate to their autism disorders might be a subject worth elaborating on.  Of course those 20 might have been lower functioning persons with actual, honest to goodness Autistic Disorder and Intellectual Disability not the "good" autistics featured in movies and major media interviews.

Sadly there is nothing unique about the Utah based study.  When it comes to the autism "spectrum" academics often join hands with the mainstream media, and with Hollywood,  to portray the so called spectrum as composed entirely of higher functioning persons with autism.

Against Autism Absurdity

Neurodiversity blogger Astrid has regurgitated Neurodiversity's most absurd claim .... that "functioning levels" are meaningless concepts.  The ideology that purportedly celebrates diversity also tries to claim that there is only one autism and they know what it is because ... well .. it is the autism they know and have. 

What strikes me as astonishing in all these autism dichotomies, you-are-not-like-my-child posts, etc., is that no-one ever actually draws a line somewhere. If autism is a dichotomy, then where, exactly, is the line between high and low functioning? How many points on an autism questionnaire does one need? How many words must one be able to say? How often must one bite one’s hands? What IQ must one have? What household chore must one be able to perform? There is no objective measure to draw the line, and that is precisely the problem with any similar dichotomy.

This comment by Astrid lacks any element of common sense. Measuring functioning levels occurs every day in the real world.  Every job interview or work performance review involves an assessment of a person's functioning level.  Every time a student passes or fails a test in school it is a measurement of functioning level. When the World Cup played out in South Africa the entire world measured the functioning levels of the various teams, the players, the coaches  and ... especially the referees with their botched calls.  

As a child and youth I played a lot of sports, In Junior High, as Middle School was then called, I almost made the school soccer team. I say almost because I was with the team long enough to be included in the photo for the local newspaper but did not make the final cut.  As a soccer player there were other players who functioned better than I did.

Yes, if a child engages in serious self injury that is an indication of functioning level in the real world.  If Astrid can, like Amanda Baggs, author a blog and discuss abstract concepts then  yes those are indications of high functioning levels.  My 14 year old son with Autistic Disorder and intellectual disabilities is low functioning. He requires adult supervision.  He can not be left to walk unattended down neighborhood streets because he does not fully understand the risks the world presents. If I were to allow him to do so then I would be knowingly putting his life at risk. If someone  can attend college and study psychology, or master the challenging work environment at Canada Post and become an autism  researcher, or  attend a college for gifted youths, then they function better in the real world than someone who, at the same age, is still reading Dr. Seuss and watching Dora the Explorer.

Neurodiversity ideologues want to tell parents how to talk about our child's autism disorders. Do not talk about curing autism. Do not call autism a disorder.  Do not suggest there is any connection between autism and intellectual disability.  Do not talk about functioning levels.
No Astrid you are not like my son in your functioning levels. He can not author blog sites about autism and does not understand what the word autism means.   Astrid is against Autism Dichotomy.  I am against Astrid, and other very high functioning persons, trying to equate their life and their challenges with my son's.  

Speak for yourself Astrid and stop trying to dictate to parents of autistic children  how we should discuss our children and their challenges.

Wednesday, July 14, 2010

Ireland Abandons Best Help for Autistic Children: Education Department Plans to Drop Evidence Based ABA for Autistic Children

Like many members of the Irish Diaspora, a Doherty of the Great Clann O'Dochartaigh , (1),(2),(3),  I enjoy reading about Irish society and history and reveling in the Irish  music, the literature and the small pleasures of St. Patrick's Day. 

I am sadly disappointed though to read that the Irish Department of Education is planning to drop evidence based,  effective  ABA treatment for autistic children in favor or an unproven, non evidence based "eclectic:" approach as detailed in the Irish Times article Best practice autism treatment 'will vanish' under proposals:

"ABA uses behavioural science to assess and treat a broad range of behaviours in individuals diagnosed with intellectual and developmental disabilities. Many academics and support groups say it is a highly effective intervention which has produced dramatic results among children with autism.

However, the Government favours an “eclectic” approach, which it says is based on a wide range of educational approaches, including ABA, a picture exchange communication system, social stories and developmentally based approaches.

In a statement yesterday, the Psychological Society of Ireland’s division on behaviour analysis said that under the department’s proposals ABA schools would simply resemble “eclectic” special schools across the State.

Among the members of the division’s committee are Prof Julian Leslie of the University of Ulster, Dr Olive Healy of NUI Galway, Dr Geraldine Leader of NUI Galway, Dr Maeve Bracken of Trinity College Dublin, as well as Michelle Kelly and Niamh McEvoy of NUI Galway.

The division says research shows that children exposed to the “eclectic” approach do not achieve the same level of gains as children who receive full-time tuition based on the science of ABA.

In addition, it said the department had not produced any research to show the superiority of the “eclectic” approach over ABA."

ABA is the most solidly backed intervention for autistic children, call it a health or education intervention as you prefer. But it is the one intervention with solid evidence in support of its effectiveness. I fully support the rights of families to seek out other interventions and treatments for their children and if they are shown to be working with their child to continue to do so.  I do not support public health or education authorities planning to abandon the most proven method of helping autistic children in favor of approaches with no evidence base.  "Eclectic" is a buzz word and nothing more than that.

Shame on you Ireland. Shame on you.

Tuesday, July 13, 2010

Autism Jabberwocky Documents Neurodiversity Hypocrisy

As I have noted before,  Autism Jabberwocky may be the best autism blog on the internet. It is certainly one that I read regularly. It is always well written and genuinely fair and balanced. None of which prevents blog author MJ from taking clear positions on issues.

In two recent posts, Left Brain Right Brain : The Bullies On Bullying and Neurodiversity's Hypocrisy, Autism Jabberwocky hits Neurodiversity ideologues on the hypocrisy that permeates their writings. . I recommend both posts, and the Autism Jabberwocky blog generally, for readers seeking an informed balanced and no nonsense perspective on autism issues.

Sunday, July 11, 2010

Autism Disorders and Family: Conor Has Always Loved Life and Basked in the Love of Family

Conor has always loved and enjoyed life to the full. He has also basked in the love and affection of family. In the pictures of Conor's early years that follow he is seen with his Mom, Dad, Brother Brandon and Grammy Doherty.  We have accepted, embraced and loved Conor, autism and all, but we have not embraced his Autistic Disorder because to do so would be to abandon the boy that we love so much.  We fought for ABA and accommodated education services for him to help improve his situation in life which, as for most, will grow more difficult with time, particularly when time, age and the inevitable fate of all humans takes his family from him.   We fight for real autism research aimed at finding treatments and cures that will benefit Conor and other persons with autism disorders who need and want treatment.  

I challenge anyone, Neurodiversity ideologue or otherwise,  to say that the boy in these pictures is not accepted and loved by his family.  Don't do it anonymously or under an internet stage name though.  Put your full real  name on your comment and tell me this boy is not living life and being loved to the full.

Conor has Autistic Disorder and Intellectual Disabilities. He has a very restricted life ahead of him once Mom and Dad are gone. Those are realities we as caring, clear headed parents can not ignore. Because of that we fight hard for accommodation, research, treatment and ... cure for Autistic Disorder to benefit  the wonderful gift that we have enjoyed for so many years ... to benefit Conor.

Saturday, July 10, 2010

Autistic Child Left on Hot School Bus - Time for No Child Left Behind to Mean Something

 We have been suffering through a pretty severe heat wave, by our standards, here in Fredericton.  But it has not hit the 103 F(39.4 C) temperature in Richmond, Virginia this past Tuesday, the day an autistic boy with asthma, was found left on a hot locked school bus.   I am absolutely disgusted to read the news in the Examiner.com article Pair charged with leaving autistic boy on hot school bus:

"The little boy was discovered by another driver at the city’s school bus depot, when he heard the child’s cries. The 5-year-old was left on the bus for an hour. The windows were rolled up and given the fact that the high temperature in Richmond on Tuesday was 103, the incident could have quickly become a life threatening situation.

Langer told the Richmond Times-Dispatch: “In this heat especially, that child left in a closed vehicle, he could have died. The heat rises incredibly rapidly in a closed vehicle. In the recent weather we've had, it's a real threat.”  The child was taken to CJW Medical Center, and later released."

Photo: Shutterstock

Thankfully the child was well enough to be released but as the article indicates things could have gotten very ugly, very quickly. The incident was also reported in the Richmond Times-Dispatch which pointed out the situation is not unique:

"children get left behind on school buses more often than you might think -- at least one expert with the National Association for Pupil Transportation has estimated it happens 75 times annually nationwide.

Just this week, the Portsmouth School Board was seeking court approval of a $15,000 settlement in a case involving a child left unattended on a school bus in March 2007. The child reportedly was treated for symptoms of post-traumatic stress disorder.

In April, a 2-year-old boy in Brooklyn, N.Y., was left on a school bus for two hours after the driver forgot to drop him off at day care, leaving the boy in the parked bus outside the driver's home until a passer-by heard him crying.

Also in April, an 8-year-old deaf student riding a special-needs bus in Las Vegas was forgotten and left alone in the bus yard. And in Tift County, Ga., a child was left on a primary-school bus."

The Richmond Times-Dispatch properly points out that the driver and monitor have been charged  with felony child neglect but have not yet had their day in court and there may be a plausible explanation as to how the child went undetected on the bus.   But surely anyone, anywhere, working with students, particularly special needs students, should begin their training with an employer by having it drilled into their heads that they MUST on EACH and EVERY trip check the bus carefully  at the end of the trip to  ensure that everyone is off the bus.

Without being glib the rule could be called the "NO CHILD LEFT BEHIND" rule and make sure every driver, monitor etc understands that failure to follow the rule can result in injury and death to a child, and can , and often will, result in criminal charges for those who fail in their duty. 

Friday, July 09, 2010

Misrepresentation of Autism Disorders: Autism Reduced to a Trendy Label?

The DSM5 will formally recognize Autism Spectrum Disorder. This New Autism Spectrum Disorder has actually been used for a while in reference to the various Pervasive Developmental Disorders in the DSM-IV and has helped lead to the banishment from public consciousness of  those with Autistic Disorder and intellectual disabilities, the "full blown" autistics to borrow terms from both Steven Higgs on whom I commented recently and Michelle Dawson who appeared as an "autistic" before the Supreme Court of Canada in opposition to parents seeking government funded ABA treatment for ... Michelle Dawson ... sorry, my mistake ...  they weren't seeking ABA treatment for Michelle Dawson .... they just wanted to help their own children. 

Michelle's Dawson grandiose, and absurd, pretension of  knowing better than parents of autistic children what was needed for those children has been eclipsed since then only by her own rhetoric, the incredible, sad story of CNN's obsession with Amanda Baggs and of course, the New Yorker Magazine/Obama administration's  belief that the anti-autism cure,  autism is not really a disability,  barely autistic Ari Ne'eman should sit on important disability and autism committees.

The misnamed ASAN, Autism Self Advocacy Network,  founded by the ever skyward Ari Ne'eman (Can a position in the Obama cabinet be far away?) has also helped promote the Ari Career Movement.  Composed of lawyers, researchers, writers, professionals of various stripes it is anything but an Autistic Disorder movement. It  isn't even clear that the ASAN requires an actual PDD or ASD diagnosis for persons to consider themselves "on the spectrum". A more accurate name for ASAN by far would be BARN ... the Barely Autistic Rights Network.

BARN, Dawson, Alex Plank, Amanda Baggs replace actual Autistic Disorder with their own self images, the images of those who can function very well interacting with NY and Toronto  media and Washington  and Ottawa politicians.  "The full blown autistics" living in institutional care or otherwise living restricted lives are not in the minds of decision makers who determine whether funding will be made available for autism treatment, or what kinds of schools or residence accommodations should be available to those with actual Autistic Disorder.

"Stranded", author of the Stranded in Motherhood blog, in commenting on my post about Autism Myths, said it very well:

"urrrgh, make so angry. Khaled wants to be cured. He wants to do things the way he knows other people are doing it, he is frustrated with himself when he cannot focus and his body wont stop moving....he is trapped. We see it in everything he does. And he is only 4! What a load of rubbish about individuals not wanting to be cured. I don't want my child's disorder to be sidelined as just "a difference", he is smart, funny, loving, gentle and severely disabled by AUTISM.

The real autism. Not the "trendy label" shoved down our throats by the media, but the real thing."

Thursday, July 08, 2010

Some Autism Myths Will Never Die

 Some autism myths will never die:

1. Swimming with Dolphins is an effective treatment for children with autism disorders. The article NE China uses dolphin to treat autistic children reminded me of this nonsense that has been around  for many years that swimming with Dophins has therapeutic value for children with autism. My 14  year old autistic  son Conor was diagnosed 12 years ago. The swimming with dolphins myth was around back then and, as the People's Daily article shows, is still swimming around today.

2. Autism isn't really increasing.  No matter how  far away we move from the DSM-IV changes in 1994 we still see many  like Dr. James Coplan rely on the DSM-IV autism definition changes to deny that the incredible increases in autism since then including recent  drastic upward estimates from the CDC of an increase from 1 in 150 to 1 in 110 is due entirely to the now long ago DSM changes of 1994.  And of course the DSM5 will soon be arriving to further obscure the issue and give the Coplans of the world another straw to cling to.

3.Autism Is 100% genetic   As Teresa Binstock said so succinctly over a decade ago in describing the public health authorities' insistence that autism research be directed toward genetic based research it's gotta be genetic. Decades of genetic focused autism research have resulted in a recent massive study report which tells us that .... there is no single genetic autism factor and that therefore ... autism is genetic. YUP let's keep studying the genetic laundry of autistic children and ignoring environmental toxins including those injected into pregnant women and young children as possible causes of autism disorders.  And if ignoring environmental factors, including possible vaccine factors doesn't work lets attack and demean celebrity autism parents for daring to question the safety of vaccine cocktails and environmental contaminants. 

4. Ari Knows Best. Parents evidence and decisions about their children's autism is anecdotal, selfish, emotional, hysterical and untrustworthy.  So let's talk to the latest publicity seeking high functioning person who might be autistic to learn how the autistic mind works. From Jim Sinclair to Ari Ne'eman and all points in between parents shouldn't decide whether their child is high or low functioning, shouldn't talk about their child's autism disorder like it's a ... disorder ... or a medical diagnosis  or even use terms like functioning. Parents should not seek to treat and cure their own children. After all, Ari Ne'eman, a very high functioning, very well connected recent University graduate knows better than Harold Doherty and other parents of autistic children severely affected by autism what is good for our children. Right? Ari says my son doesn't want to be cured? I guess this person with nothing in common with my son, who doesn't know him and has no responsibility for his care should decide right? Apparently the Obama administration thinks so appointing  Mr. Ne'eman, who denies autism is a medical or real disability, and should not be cured, to prominent national US  disability and autism committees.
From swimming with Dolphins to swimming with Jim, Temple, Michelle, Amanda and Ari some autism myths will never die.

Wednesday, July 07, 2010

Dr. Philip J. Landrigan Calls for Expanded Research Into Environmental Causes of Autism

Dr. Philip J. Landrigan  has published, in the April 201 edition of Current Opinion in Pediatrics,   an article  titled  What causes autism? Exploring the environmental contribution in which the he calls for expanded research into environmental causes of autism.  As set out in the abstract summary:

"Expanded research is needed into environmental causation of autism. Children today are surrounded by thousands of synthetic chemicals. Two hundred of them are neurotoxic in adult humans, and 1000 more in laboratory models. Yet fewer than 20% of high-volume chemicals have been tested for neurodevelopmental toxicity. I propose a targeted discovery strategy focused on suspect chemicals, which combines expanded toxicological screening, neurobiological research and prospective epidemiological studies."

Dr. Landrigan notes that genetic factors are implicated in causing autism but only in a very small number of cases and they do not explain key clinical and epidemiological features. He suggests as a hypotheses that early environmental factors could contribute.  Dr. Landrigan notes two important indirect sources of support for the hypothesis: "studies demonstrating the sensitivity of the developing brain to external exposures such as lead, ethyl alcohol and methyl mercury" and, more importantly, "studies specifically linking autism to exposures in early pregnancy – thalidomide, misoprostol, and valproic acid; maternal rubella infection; and the organophosphate insecticide, chlorpyrifos."

"measured 212 chemicals in people's blood or urine—75 of which have never before been measured in the U.S. population. The new chemicals include acrylamide, arsenic, environmental phenols, including bisphenol A and triclosan, and perchlorate"

I noted that this alarming report had been released just days before Christmas when it would attract little public attention. But I am not a scientist and even worse, I am a parent of an autistic child, which means that my opinion about the realities of autism disorders,  is generally worth less than nothing in public health authority circles.  I am very pleased that someone as distinguished as Dr. Landrigan has in fact been paying attention to the possible role played by untested synthetic chemicals in causing autism in children. For those who do not know who Dr. Philp J. Landrigan is I am citing, in full his bio,  as listed on the Environmental Health Perspectives site:

"Philip J. Landrigan, MD
Center for Children's Health and the Environment
Department of Community &  Preventive Medicine
Mount Sinai School of Medicine

Philip J. Landrigan, a pediatrician, is the Ethel H. Wise Professor and chair of the Department of Community and Preventive Medicine at the Mount Sinai School of Medicine. He also holds a professorship in pediatrics at Mount Sinai. He directs the Mount Sinai Center for Children's Health and the Environment. Landrigan is a member of the Institute of Medicine of the National Academy of Sciences (NAS) and is currently editor-in-chief of the American Journal of Industrial Medicine. He has served in many other capacities, including editor of Environmental Research and committee chair at the NAS on Environmental Neurotoxicology (NAS 1992) and on Pesticides in the Diets of Infants and Children (NAS 1993).

The report of the NAS committee that Landrigan chaired on pesticides and children's health was instrumental in securing passage of the Food Quality Protection Act of 1996, the major federal pesticide law in the United States. In New York City, he served on the Mayor's Advisory Committee to Prevent Childhood Lead Paint Poisoning and on the Childhood Immunization Advisory Committee. He is chair of the New York State Advisory Council on Lead Poisoning Prevention. From 1995 to 1997, Landrigan served on the Presidential Advisory Committee on Gulf War Veteran's Illnesses. In 1997 and 1998, he served as senior advisor on children's health to the administrator of the U.S. Environmental Protection Agency (EPA). He was responsible at the U.S. EPA for helping to establish a new Office of Children's Health Protection."

Hopefully Dr. Insel and the IACC will take seriously the warning sounded by Dr. Landrigan. With his qualifications and experience his is a voice that should be heeded if we are to ever find out what is happening to our children, what is causing them to develop so many neurodevelomental disorders in such alarming numbers.  Rooting endlessly through the genetic family histories of autistic children has not  helped.  Fudging the facts, distorting the picture by periodic DSM changes will not help our children. It is time the IACC and other public health authorities joined respected voices like Dr. Landrigan, Dr. Irva Hertz-Picciotto, Dr. Jon Poling and others who have called for research into the environmental causes of autism disorders.  

Autism is rising. It is time to quit the genetic stalling game and find out why.

Tuesday, July 06, 2010

Vancouver Sun's Faces of Autism: Still the Most Honest Media Presentation of Autism

Yesterday I commented on yet another media presentation of autism, in the Bloomington Alternative,  which focused almost entirely on Aspergers and ignored those most severely affected by autism ... those with Autistic Disorder.  Few, very, very few major media outlets want to present the realities of severe Autistic Disorder.  Who wants to show the world the harsh realities of severely autistic persons, the challenges they present to themselves, their families and other caregivers? Who wants to point out the restricted and dreary lives in the care of others that is the ultimate fate of so many with Autistic Disorder? Bummer man; don't ruin my vibe with that autism reality stuff.

There are few mainstream media sources that have presented autism fully and honestly to the world.  One that I have mentioned on this site in the past is the Vancouver Sun with its six part series Faces of Autism.  I mention it again because it is still one of the few sources that actually portrays severe Autistic Disorder reality to the world while discussing autism.  The series is the work of columnist Peter McMartin and photographer Glenn Baglo.

Part One of the series, Emotional Roller Coaster,  deals with the realities of life for, and with, a severely autistic 14 year old girl, Kristi, Jansen:

"14-year-old Kristi Jansen swings from crying to laughing to screaming in a matter of seconds. Her body, home and family members -- especially her mother -- bear the scars of her violent outbursts that have only been calmed through years of expensive therapy."

The feature, particularly the photos of Kristi smiling, also show the joy of this young woman  but it does not do so by hiding the truth about the serious challenges facing persons with severe autism disorders or the challenges facing the family members and others who care for and love them.  The Vancouver Sun, columnist Pete McMartin and photographer Glenn Baglo do what journalists are supposed to do ... tell the truth ... give us the whole picture about autism disorders.

Monday, July 05, 2010

Steven Higgs on Autism - One Half Sentence for Autistic Disorder, One Whole Article for Aspergers

Steven Higgs has been a refreshing voice on the autism internet.  He doesn't simply regurgitate the official line on issues and his journalism background and writing skills are always helpful.  When it comes to autism "spectrum" disorders though Steven Higgs does what most in the mainstream media and on the internet do ... he ignores almost entirely those with Autistic Disorder, those most severely affected by autism disorders, and writes an article about the entire autism spectrum of disorders in which he focuses on Aspergers.

In Autism's generation gap, a lesson re-learned Steven Higgs relates his experience, and those of parents of autistic children that he has spoken with, when they realized certain essential truths about "autism".  Higgs mentions ... in one sentence ... his experience with "full blown autism":

"Travis is the first autistic person I've actually conversed with. Over the course of this project I've interviewed a half dozen parents with autistic kids; shaken hands with, observed and photographed a 22-year-old man with Autistic Disorder, also known as "full-blown autism," who lives in a group home in Indianapolis and requires professional care, 24-7; and shared space with (but only caught a fleeting glimpse of) a 15-year-old girl with Asperger's."

The highlighted words in the preceding quote are the only mention of Autistic Disorder in this article about "Autism's" generation gap. The rest of the article is about Aspergers.   Like almost all mainstream media and internet articles the Bloomington "Alternative" journalist's essay is anything but alternative. It is yet another article in which the author talks about autism by taking the easy route, by focusing on the high functioning persons with Aspergers  exemplified by the corporate board members of ASAN  and its leader Ari Ne'eman,  a very intelligent, high functioning person with  excellent communication and social skills, and curiously enough, a diagnosis of Aspergers, who has been appointed,  first by himself, then by his media and political connections, to speak on behalf of the entire purported autism spectrum. From Jim Sinclair to Temple Grandin to Michelle Dawson to Amanda Baggs to Alex Plank to Ari Ne'eman to this  Steven Higgs  article,  the public rarely  sees those most severely affected by autism disorders.

To his credit Steven Higgs at least mentions, albeit in one part of one sentence, the existence of persons with Autistic Disorder  who require 24-7 care.  In itself this brief mentions a bit of autism reality rarely seen outside this, and a few other,  Non Neurodiversity,  autism blogs.

That small mention of someone severely affected by Autistic Disorder is a huge step forward in mainstream media and internet discussions of the alleged  autism "spectrum".  But more is needed to end the misrepresentation of autism spectrum disorders and the banishment of the original, severely autistic from public consciousness. Much more.

Sunday, July 04, 2010

Happy Independence Day to My American Friends From a Canadian Autism Dad

I am, like most Canadians, a cultural "spy " of all things American. Spy might be overstating it but we are very knowledgeable about you. We have no choice.  Your television programs and news broadcasts are beamed into our living rooms every day and have been for many years. That is not a complaint. That is a fact. Most Canadians enjoy American TV and movies and what ever the internet brings today. This Canadian is very happy that we live beside such a fine neighbor with whom we share so many common values. On your Independence Day I  wish you "the very best".

As a father of an Autistic boy I am particularly appreciative of the efforts made by Americans in advancing our understanding of autism disorders and seeking treatments and cures. Two names in particular stand out for this Autism father:  the late Bernard Rimland and Ivar Lovaas.  

Lovaas  provided the evidential  kick start that helped make ABA available to parents seeking to help their autistic children.  His study results and methods  have been invaluable  tools used in  the progress that has been made to date in Canada .... by parent advocates ... seeking to actually help our autistic children. 

Bernard Rimland is given credit for ending the very harmful refrigerator mothers' theory of autism causation that did so much damage to autistic children and their families.  He also pointed out that autism is increasing , a simple fact which is to this day denied by so many with career or ideological interests in denying the facts in front of their faces. With autism diagnoses themselves expanding from 1 in 166 to 1 in 150 to 1 in 110 within a few short years, and long after the DSM changes in 1994, there are still  many head in the sand denialists who argue that increases in diagnoses does not mean increases in tactual cases of autism They rely on unproven assumptions to dig in their heals. Rimland knew better.

I also thank the US for the debates going on in places like the IACC, the Inter Agency Autism Coordinating Committee. While I share the frustration of many autism parents with the flimsy science used to assert the lack of any vaccine autism connection and the  IACC /pharmaceutical  conflicts the IACC has at least discussed and acknowledged that the dramatic increases in autism diagnoses can only be partially explained by the 1994 DSM changes and social ascertainment factors. That in itself is progress as small as it may seem. The IACC has expressly acknowledged that a paradigm shift in our understanding of autism is taking place from the 100% it's gotta be genetic model identified and criticized  by Teresa Binstock over a decade ago to the modern view that autism disorders probably result from the interaction of genetic and environmental factors.

Small steps? Maybe, but they are necessary steps.  Once acceptance of the environmental aspect of autism becomes more widespread real research aimed at understanding fully what causes autism disorders, and finding cures, can begin and the bizarre obsession with genetic autism research can be reduced to a more balanced level. 

Whatever paths unfold for those with autism disorders, and the families that care for them, real progress is unlikely to come from Canada dominated as it is by a small clique of autism researchers some of whom think that the very idea of curing autism is nonsense.  In the UK the Neurodiversity embrace and enjoy the beauty of autism mindset also has a firm grip  and no progress is likely on that side of the ocean. Future autism progress will likely occur in the US as it so often has.

To all our American friends this Canadian autism dad says thank you and have another very happy Independence Day.

Thursday, July 01, 2010

MacBeth in Odell Park

No autism last night as my oldest son Brandon and I attended the Bard in the Barracks presentation of  MacBeth in Odell Park (I do not  subscribe to the speculation that various historical geniuses including Shakespeare were autistic).  Heather and I have watched a lot of BBC Shakespeare productions with Brandon and he bought a pair of tickets for his ever wiser and slightly grayer Dad's birthday. It was an amazing experience in the woods of Odell Park at night and MacBeth is my favorite Shakespeare. I loved it. 

The production went from 7:30 to almost 11:30 pm with a large crowd turn out.  We followed the cast around 14 settings in Odell Park.  Some  times we walked on the gravel trails. Often the entire crowd literally followed along paths through the woods. As night fell small lights were posted as the crowd trooped through the woods.


The  host,  Len Falkenstein, told us at the outset that it would be a 360 degrees experience and it was. The three weird witches suddenly performed beside us at times. As the audience walked to the next scene messengers ran through the woods delivering news to MacBeth and Lady MacBeth.   We walked around Banquo's dead body laying on the trail after he was murdered by  MacBeth's assassins.  Malcolm and his soldiers made their presence known behind us as we faced the other direction watching MacBeth in the final scene. The great characters and great lines from Shakespeare's MacBeth were all well performed and the cast deserved the rousing ovation they received at the end. The event organizers deserve credit for guiding us all safely, for the most part comfortably, and always enjoyably through the woods of Odell Park at night.

Thanks to Brandon for giving his Dad a wonderful birthday  gift.