AGE OF AUTISM

Why Do Autism "Experts" Know So Little? The DSM-5 Debacle.

By Anne Dachel

Experts know NOTHING about autism. NOTHING. Not the cause or the cure. They’re not sure what the current rate is since the last time they updated the numbers was three years ago but it was based on studies of eight year olds back in 2006. Now they’re also telling us that they don’t even know exactly what autism is.

Stories are out everywhere about the American Psychiatric Association’s plan to revise their manual of mental disorders, known as the DSM, where they’ll be changing what we now call autism.

I’m not sure why we should trust the people who can’t tell us anything for sure about autism. When exactly are they going to get it right? In a couple of years will they be overhauling autism again? I would think that a lot of psychiatrists are embarrassed about the perpetual head scratching over autism, but they’re not. News reports give us doctors who welcome the changes. It seems they’ve finally figured out what the word autism really means.

Parents are worried however. No one is expressing a lot of hope that a new definition will make life better for any kids with autism, in fact, a lot of parents are very concerned that getting rid of the label of autism will mean children will lose critical services.

Now Dr. Catherine Lord, one of the experts working on the DSM changes, hopes that won’t happen. She was on CBS News on Jan 25  saying, "Families are very, very concerned that their kids are going to lose their diagnosis. It's really important to reassure people that there's no intention that that will happen. ...The intention of the new criteria is to better describe children--and adults--who have autism, Aspergers Syndrome, PDD-NOS, ... We don't want criteria that diagnose everyone as having autism. We want to do a better job of diagnosing the people who do. We're not trying to exclude anyone."

And Lord also announced on CBS that for some kids, autism isn’t a lifelong disability. Lord said, “10 to 20 percent outgrow autism--those without other severe problems.” That is a stunning claim. I seriously want to see the thousands of kids who outgrew autism, especially kids who were non-verbal and who displayed all the signs of classic autism we’re so familiar with. I want to see those children today as a typical-acting with no signs of autism.

With all the quibbling over the word autism, no one is ever worried. The Catherine Lords of the world act like we have lots of time to figure out autism and that losing a generation of children to a disorder no one ever heard about 25 years is something we just have to learn to live with. No one talks about what this country will be like when one percent of adults as well as kids have autism and we’re paying and paying and paying. (And I’m sure there are lots of people who look forward to that day so they can say, “See, we told you the rate was the same for adults!”)

The New York Miracle Book Tour and Seven Keys to Unlock Autism Giveaway!

Leave a comment to win one of 5 copies of  Seven Keys to Unlock Autism. Our friend Dr. Stephen Shore wrote the foreword.

THE MIRACLE PROJECT PRESENTS

I  HEART  AUTISM: The New York Miracle Book Tour

With

Elaine Hall & Diane Isaacs

Authors of

SEVEN KEYS TO UNLOCK AUTISM

In February, the acclaimed approach to helping children with autism,

profiled in the award-winning documentary Autism: The Musical,

comes to New York!

(New York, January 2012)-- The Miracle Project, a theater arts program for children with autism, announces the “I Heart Autism: The New York Miracle Book Tour” -- kicking off with a fundraiser and book signing on Tuesday, February 7 at Barnes & Noble in New York City.

Authors Elaine Hall and Diane Isaacs will read and sign copies of their new book SEVEN KEYS TO UNLOCK AUTISM at Barnes & Noble (150 East 85^th Street, New York City) at 7:00pm.   This groundbreaking book outlines seven integrated keys for educators and parents to make meaningful connections with children on the autism spectrum. The book is based on the unique approach used by Elaine Hall and Diane Isaacs of The Miracle Project, a musical theater program for children with autism and their peers and siblings. The book teaches ways to apply these effective strategies at school and at home to nurture kids' self-expression and social skills. 

The Case Against the Whittemores and the Importance to the Neuro-Immune Disease Community

By Kent Heckenlively, Esq.

The Reno Gazette-Journal and the Las Vegas Review Journal are both reporting that Harvey and Annette Whittemore, founders of the Whittemore-Peterson Institute for Neuro-Immune Diseases at the University of Nevada/Reno have been sued by their former business partners for embezzlement in the amount of more than 40 million dollars. The articles can be accessed HERE.

This development may have an enormous impact on the ME/CFS community (myalgic encephelomyelitis/chronic fatigue syndrome) and also end up being of great importance to the autism community.

The readers of this blog will no doubt be aware that Dr. Judy Mikovits, the former research director of the Whittemore-Peterson Institute presented information at a poster session of the First International Conference on XMRV in September of 2010 that in a small study 14 out of 17 children with autism, who had parents with ME/CFS, tested positive for signs of a retroviral infection. (This was in addition to her reporting that 66 out of 101 patients with ME/CFS showed signs of retroviral infection.  The research was published in the journal Science.  It has since been retracted, although further research is continuing, and the controversy shows little sign of abating.)

Tics and Toxins: Leroy Put Student Playing Fields on FEMA Flood Hazard Land

By Dan Olmsted and Mark Blaxill

LEROY, N.Y., February 2 – School officials who say environmental factors can’t be responsible for the outbreak of tics at the Junior/Senior High School might want to check last year’s record rainfalls – and the flood-prone ground right under their feet.

The tics broke out after an unusual pattern of heavy rain, followed by a mild winter that has kept the ground from freezing and left lots of standing water at Leroy Junior/Senior High School.

That should be no surprise. Part of the school grounds -- including athletic fields -- are right on top of a federally designated FEMA Flood Hazard Area. While a county official told us that the school itself sits on a slope just above the hazard area, the zone cuts right across the girls’ softball diamond, as well as the football/track field and another, larger baseball field.

The land in the flood hazard area generally correlates with other mapping that shows less optimal and more flood prone Canandaigua soil covering the site.

In fact, we’ve been told by local residents that some fields, including the girls’ softball field just built in 2009, had to be dug up and rebuilt within the last year because the ground was so wet. The building itself has not escaped water and structural woes – the gym could not be used when the school was first opened a few years back because the floor buckled and sank, and the opening of school was delayed one year for a week by flooding, according to a former student.

School officials won’t comment, but Superintendent Kim M. Cox issued a new statement Wednesday, mostly blasting national press attention and the involvement of famed advocate Erin Brockovich, who has cited a train derailment of hazardous material a few miles from town in 1970 as a likely cause. Cox said new tests have shown drinking water inside the school – which comes from neighboring Monroe County – is safe.

Citing state and federal experts, she said: “All of these agencies and professionals from these agencies have assured us that our school is safe. There is no evidence of an environmental or infectious cause. Environmental causes would not discriminate. We would see a wide range of people affected.”

But no one seems to be looking up at the sky or down at the ground. LeRoy, like other New York state and Northeastern U.S. locations, has seen an epic amount of rain during the past 12 months. We put this chart together to show 2011 rainfall versus normal amounts in Buffalo and Rochester. LeRoy is located between them.

Hacked Off Boss, Martin Moore, Sat on UK Government Panel with Editor who Hired Brian Deer

By John Stone

Martin Moore (left), the unresponsive boss of the organisation ostensibly set up to support members of the public who have fallen victim of the unethical journalistic practices of the Murdoch media empire in the UK (See Age of Autism "Write to Hacked Off.." HERE), sat on a panel set up by the UK’s Department for Business to plan the future of science journalism in Britain producing a report ‘Science and the Media: Securing a Future’. Moore has repeatedly refused to be drawn on a catalogue of apparent abuses in Deer’s MMR investigation, including Deer’s assertion that a Sunday Times news editor, Paul Nuki (right), had hired him to find “something big” on “MMR” (which sounds suspiciously like a fishing expedition). It now turns out that Nuki and Moore sat on the same government committee in 2009-10 to determine the future of British science journalism under the chairmanship of Fiona Fox. Fox, the head of Science Media Centre, has also recently given evidence regarding the MMR to Leveson Inquiry on ethics in British journalism.

Meanwhile, Moore’s organisation Hacked Off effectively sits as unofficial guard dog to the government appointed Leveson Inquiry, which has now heard a succession of witnesses including Fox condemn as irresponsible earlier media concerns about the safety of MMR, but has so far failed to hear witness statements based any of the submissions about Deer’s investigation.

To date Moore and Hacked Off have ignored documented concerns that:-

Open Letter to the Town of Leroy, NY: Learn Lessons from the Autism Epidemic

By Kevin Barry

TOWN OFFICIALS:  LISTEN TO AFFECTED FAMILIES, BE PUBLIC AND TRANSPARENT WITH ENVIRONMENTAL TEST RESULTS & DON’T OFFER RIDICULOUS EXPLANATIONS BLAMING THE INJURED.

The heavy rains and flooding in August and September 2011 may have lead to a release of dichloroacetylene (DCA) in LeRoy, NY.  DCA is a neurotoxic decomposition product of trichloroethylene (TCE) which spilled in the area 40 years ago due to a train derailment.  DCA has been shown to cause tremors and cranial nerve palsies – or the more vernacular name - tics.  More investigation of this possible connection is warranted.

Mass hysteria?  Conversion disorder?  Really? Have you learned nothing since the Salem Witch Trials? Those explanations are no more ridiculous than trying to blame refrigerator mothers or old sperm for the autism epidemic.   Wasting time on ridiculous explanations is tragic because it does not help those currently injured and it does not prevent new injuries.  LeRoy psychiatrists?  Please admit that you do not know what happened to these girls and move along.

I listened to the families and the girls who were experiencing the symptoms, which lead me to question, why LeRoy, NY?  Why now? 

After reading about the 1970 TCE spill, which is unique to the LeRoy community, I began searching to see if TCE could have a role in the neurological issues.  Additionally, could the massive flooding that the LeRoy area experienced in the aftermath of both Hurricane Irene and Tropical Storm Lee help explain why this is happening now, and not previously in the last 40 years?

The town officials and school district should be transparent with their environmental test results and provide those results to the public as soon as possible. The town officials and school district should also allow for private testing to search for TCE/DCA exposure to corroborate their results.   I believe there is sufficient rationale for additional testing to determine specifically if TCE/DCA plays a role in the physical issues these children are experiencing.  

While the potential connection between TCE/DCA and the girls with neurological symptoms is speculative and needs to be confirmed by testing, the potential connection warrants specific investigation.   An article from 1984 in the journal Archives of Toxicology suggests all that is required to form DCA vapor is TCE plus “moist concrete.”  As a result, in addition to the school property, many locations in LeRoy should be tested for TCE/DCA contamination.

A 1944 paper describes how DCA may have caused “Cranial Nerve Palsies” in 13 patients (10 women) when TCE was used as an anesthetic.  The 1944 paper makes a very important general point about toxicology: 

Sir Crispin Davis and James Murdoch No Longer on GSK Board

The Wall Street Journal reports that James Murdoch, son of beleaguered media mogul Rupert Murdoch, whose empire is embroiled in scandal, has stepped down  from the GlaxoSmithKline board. See WSJ online HERE.  In addition, Sir Crispin Davis, former Chief Executive of Reed Elsevier, which owns The Lancet, which published the paper that included Dr. Andrew Wakefield's MMR information,  is leaving the board after a nine year tenure.

The heir to Rupert Murdoch’s media empire has quit the board of Britain’s biggest drugs company in the wake of the phone hacking scandal.

James Murdoch joined  GlaxoSmithKline less than two years ago.

He has come under fire from MPs who have questioned him about signing off out-of-court settlements to hacking victims without a full picture of what had gone on at the News of the World.

He was forced to deny misleading Parliament over the extent of his knowledge.

Glaxo said Mr Murdoch’s decision to turn his back on the £98,000 role was entirely his own.

Chairman Chris Gent said: ‘James has taken this decision to focus on his current duties as non-executive chairman of BSkyB and following his decision to re-locate to the United States as chairman and chief executive, international, of News Corporation.’

John Stone has written about both Murdoch and Davis and their proximity to the Dr. Andrew Wakefield MMR Lancet Paper BMJ topic.

James Murdoch Still Supported by GlaxoSmithKline ran last July:

Lancet Boss Failed to Disclose Own Conflicts to Parliament While Denouncing Wakefield

Both posts run in full following the jump:

Tics and Toxins: Just Before Mystery Illnesses Hit Leroy NY, School Built New Playing Fields

By Dan Olmsted

LEROY, N.Y., January 30 -- New playing fields, including one for girls' softball, were completed the year before the outbreak of tics and other ailments began afflicting girls at Leroy Junior/Senior High School.

Aerial photographs compiled by the Genesee County assessments office clearly show the construction in progress in 2009, here:

The 2010 photo shows the completed fields, here:

 

The smaller field to the immediate left of the school is the girls' softball field, according to a former student at the school. All but one of the students affected so far are girls. There are unconfirmed reports that one boy was also stricken.

School officials said earlier this month that two reports they commissioned of indoor air quality and mold had ruled out any environmental cause. New York Health Department officials concurred and a spokesman told me last week, "The school is safe." Most of the girls were diagnosed at a Buffalo neurological clinic with "conversion disorder," in which psychological stress or trauma is supposedly converted into physical symptoms that clusters of people can display at the same time.

But parents and the girls themselves have rejected that diagnosis, and other theories have been advanced; school officials now say they are ordering another round of tests. I reported last week that the first testing did not include any outside areas of the school grounds, except for reviewing school pesticide logs. Because those logs were in order, environmental factors outside the school building were ruled out. State health officials also say no infectious agent was involved.

But in any investigation of a new illness, the question of what's new in the environment -- from medicines a person is taking, to places they have been, to changes in where and how they live -- needs to be ruled out first.

Building ballfields within the past two years certainly qualifies as new. That could hypothetically create new risks, either from stirring up toxins such as pesticides on the site, or importing materials such as fill or sod that was previously contaminated. New attention has been given to a railroad derailment several miles away in 1970 that spilled both cyanide and TCE, a highly toxic manufacturing agent. Environmental activist Erin Brockovich has suggested that the school site was contaminated by runoff from that incident, or that dirt from that area was used to construct the school in the early 2000s.

The Situation Room: Autism, Vaccines, and Agent Orange

Managing Editor's Note: We're proud to welcome Dan Burns as our newest Age of Autism Contributing Editor.  Dan has an adult son with autism named Ben, and his perspective and writing style are a great addition to our content. Welcome, Dan.

By Dan E. Burns 

Project Draft 13

 I will show you fear in a handful of dust

(T.S. Eliot, The Waste Land).

We stared at it, my Public Relations colleagues and I, perhaps a little too long. Projected on the wall of the Situation Room stood the Agent Orange distillation column, a 50-foot tall steel vessel reigning over a graveyard of oil drums labeled “Diamond Shamrock Corporation” and “Hazardous Waste.”

Agent Orange is not an ingredient in vaccines. But what happened – or didn’t happen – in the Situation Room has a lesson for us, the parents of vaccine-injured children.

In 1983, Vietnam vets from Operation Ranch Hand were suffering from neural and blood disorders, miscarriages, leukemia, and cancers of the prostate, lung, and liver. They were marching, waving signs, and pointing fingers. At us. Allegedly, the damage came not from Agent Orange per se, but from 2,3,7,8-tetrachlorodibenzodioxin, a contaminant produced during the “cooking” or fractionation process when the temperature in the tower rose a little too high for a little too long. As it did in the Diamond Shamrock Ironbound plant. If the EPA is right – the claim is disputed HERE – dioxin is one of the most potent carcinogens known to human kind.

Diamond Shamrock mounted a vigorous defense. “We can’t cure anyone’s cancer,” said the General Counsel. “What’s done is done. If we move one shovelful of dirt more than required, we open ourselves up to additional liability. That would just spread the mess.”

My colleagues in the Situation Room were decent, caring people. “Chipper,” to my right, recruited and went to bat for minorities. “Lou,” to my left, our one-man brain trust, played the blues guitar and wrote protest songs light with whimsy and humor. I was Executive Speechwriter, raising two college-bound children. After an underpaid career in academia, I needed this job.

Lou had researched the issue for years. “In jungle warfare,” he said, “G.I.s were exposed to a host of tropical pathogens, fungi, protozoa, unknown viruses, and biological agents coming at them through novel vectors on all sides. We don’t know what caused their chronic fatigue, birth defects, and cancers. Diamond Shamrock operated under mandate from the government, and our actions were safe, proper, and legal.”

‘That’s right,” chimed in the General Counsel. “We have a fiduciary responsibility to our shareholders. That’s why we’re here today.”

National Autism Association & AutismCollege.com To Offer Free Online Safety Conference

National Autism Association & AutismCollege.com To Offer Free Online Safety Conference

San Diego, CA – The National Autism Association and AutismCollege.com are teaming up in February to offer a free web conference for caregivers of those diagnosed with an Autism Spectrum Disorder (ASD).  The web conference series entitled Autism Safety and Crisis Prevention will feature top autism experts covering sensitive safety topics that include sexual-abuse risk reduction, bullying prevention, suicide ideation, wandering prevention, and prevention of risks associated with restraint and seclusion.

Historically, medical literature has maintained that ASD does not affect life expectancy; however, a 2001 California study found elevated death rates in ASD related to several causes that included accidents such as suffocation and drowning. “Safety is a primary concern for those on the spectrum and their parents, yet there is very little practical information out there,” says Chantal Sicile-Kira, author and founder of Autism College. “Autism College is happy to partner with the National Autism Association to help empower parents with information they need to protect their children and teens.”

The Autism Safety and Crisis Prevention webinar will be available to caregivers through February. To register, visit www.autismcollege.com.

Webinar presenters will offer real-life strategies to address multiple safety topics, followed by a question-and-answer session. “Even those families who currently do not face safety challenges can learn valuable information through this free safety online conference,” says NAA President Wendy Fournier. “Being aware of the issues and armed with information is critical for all parents.”

Autism Safety and Crisis Prevention Webinar Schedule:

-        Saturday, February 11, 8:15am- 9:45am PST, Dr. Nora Baladerian, Ph.D. will present “How Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”

-        Saturday, February 11, 10:00am-11:30am PST, Dr. Lori Ernsperger will discuss “The 3 R's to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report.”

-        Wednesday, February 15, 6:00pm-7:30pm PST, Dr. Joshua Feder will discuss “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders.”

-        Saturday, February 18, 8:15am-9:45am PST,  Wendy Fournier of the NAA will discuss Wandering Prevention and Response.

-        Saturday, February 18, 10:00am- 11:30am PST, Pat Amos, M.A. will discuss “Preventing and Eliminating the Use of Restraints and Seclusion.”

About AutismCollege.com:

AutismCollege.com provides practical information and training on autism.

About National Autism Association (NAA):

NAA is a parent-run nonprofit organization and the leading voice on issues related to autism safety and crisis prevention. The organization’s mission is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. For more information, visit nationalautismassociation.org.