UPDATE: Globe and Mail Health Columnist André Picard Abandons Evidence Based Autism Treatment Principle, Embraces SON-RISE PROGRAM®

André Picard is a Globe and Mail public health reporter with the Glboe and Mail which is promoting the Son-Rise Program®, a purported autism program with almost no evidence based support of its effectiveness, a program which is not even mentioned in the recent CMAJ (2014) article or the (2007) AAP (reaffirmed 2010) autism reports reviewing the evidence, or lack thereof in support of various autism treatments.  The 2000 MADSEC (Maine) review did expressly assess Son-Rise Program® as described in my initial commentary on this somewhat startling embrace by the Globe and Mail of a weak to non evidence based autism "treatment".  By tweeting his papers opinion that "Science has yet to catch up with this particular therapy. But for some families, it's breaking through the walls of autism" Picard appears to have condoned his papers rejection of evidence based autism treatment in favor of emotionally appealing anecdotal heart tugging stories which prompt emotion to trump evidence and analysis. 

Picard is entitled to his own opinions. Unfortunately his opinions reach and influence many Canadian parents whose autistic children may be exposed to the risks of lost development time if  their parents abandon evidence based autism treatment for the as yet still weakly evidence supported Son-Rise Program®.

Chicago Tribune Says Autism Treatment Uneccessary, Just Let It Be

Apparently the Chicago Tribune is of the view that the only real concern facing autistic children and their families is the risks faced by treatments, and DAN doctors in particular. In two very superficial articles, yesterday's Autism treatments: Risky alternative therapies have little basis in science and an article today titled Autism treatment: Success stories more persuasive to some than hard data the Tribune continues its war against Defeat Autism Now and DAN doctors by ridiculing anecdotal evidence of successful autism treatment.

Although the Tribune has now published articles on two consecutive days on the subject of autism treatments it makes no mention of the most evidence based autism intervention ... ABA. While the Tribune is concerned about telling parents of autistic children what it feels is wrong in the world of autism treatments it doesn't consider it important enough to mention the widespread public health support for the evidence based effectiveness of ABA as an autism intervention.

And once again the Tribune makes no mention of the failure by public health authorities and researchers to seek all causes of autism or to attempt to find actual cures. Instead the Tribune simply ignores the real issues presented by autism disorders and sings "let them be, Lord them be" providing anecdotal evidence from Doctors that autistic children as they age will progress without intervention:

"But in evaluating a therapy, the challenge is determining how much, if any, of the progress can be credited to the treatment.

That is because, over time, children with autism do develop, said Dr. Max Wiznitzer, a pediatric neurologist and an autism expert at Rainbow Babies and Children's Hospital in Cleveland. They make leaps; some may plateau or regress, but they show improvement.

"Kids are at their worst in the second and third year of life," Wiznitzer said. "That is when they are not talking. That is when they are most into themselves."

But around age 3 the children often begin to talk, he said. "Over 3 to 5 years, you see an improvement in communication skills. ... By school age, they have language to get needs and requests met," Wiznitzer said.

Between 10 percent and 20 percent of children with autism who were diagnosed early may make so much progress that they are indistinguishable from their peers and may "lose" the diagnosis.

This happens regardless of whether the child is undergoing alternative therapies, said Dr. Susan Levy, director of the Regional Autism Center at the Children's Hospital of Philadelphia. But parents may credit treatments for the gains."

And there we have it. In Chicago Tribune Autism World autism disorders do not require treatment. The solution to the challenges facing autistic children and their families can be found in the lyrics of John Lennon and Paul McCartney:

And when the broken hearted people
Living in the world agree,
There will be an answer, let it be.
For though they may be parted there is
Still a chance that they will see
There will be an answer, let it be.
Let it be, let it be. Yeah

There will be an answer, let it be.

No autism treatment, no ABA, no "alternative" treatment, no autism research into environmental causes or possible cures. the Chicago Tribune has "an answer" for parents concerned about their autistic children .... let it be.

autism

Topsy Turvy Irish Times Article Demeans Autism Parents, Promotes Reality Challenged Professor

Corrrection: This comment initially, and incorrectly, identified Professor Michael Fitzgerald as being the author of Defining Autism – a damaging delusion, instead of Dr. Mike Fitzpatrick. Thank you to Mike Stanton for the correction. This comment has now been corrected and modified accordingly.


It is Topsy Turvy Day in an Irish Times article Darwin is the origin of new thesis on Asperger's. In "Darwin" Dr. Muiris Houston promotes the latest effort by Professor Michael Fitzgerald to assign yet another historical genius, this time Charles Darwin, to his speculative list of persons with Aspergers. Dr. Houston glosses over entirely the fact that Professor Fitgerald's opinion is pure speculation, having never met Darwin who died before Asperger's was even defined as a medical condition. Nor does Dr. Houston mention Professor Fitzgerald's career of assigning many historical geniuses to his speculative Asperger's list. Parents once again are the villains in Dr. Houston's and Professor Fitzgerald's Topsy Turvy fantasy production.

Wikipedia, in People speculated to have been autistic, has a summary of Professor Fitgerald's career in historical genius autism speculation:

Michael Fitzgerald, of the Department of Child Psychiatry at Trinity College, Dublin, has speculated about historical figures with autism in numerous journal papers and at least three books: The Genesis of Artistic Creativity: Asperger's Syndrome and the Arts,^[4] Unstoppable Brilliance: Irish Geniuses and Asperger's Syndrome^[5] and Autism and Creativity, Is there a link between autism in men and exceptional ability?^[6]

Fitzgerald speculated the following were autistic in The Genesis of Artistic Creativity:

• Writers – Hans Christian Andersen, Lewis Carroll, Bruce Chatwin, Arthur Conan Doyle, Herman Melville, George Orwell, Jonathan Swift and William Butler Yeats.
• Philosophers – A.J. Ayer, Baruch de Spinoza, Immanuel Kant and Simone Weil.
• Musicians – Bela Bartok, Ludwig van Beethoven, Bob Dylan, Glenn Gould, Wolfgang Amadeus Mozart and Erik Satie.
• Painters – Vincent van Gogh, L.S. Lowry, Jack B. Yeats and Andy Warhol.

Unstoppable Brilliance discusses Daisy Bates, Samuel Beckett, Robert Boyle, Eamon de Valera, Robert Emmet, William Rowan Hamilton, James Joyce, Padraig Pearse and W.B. Yeats.

Autism and Creativity says the following may have been autistic: Lewis Carroll, Eamon de Valera, Sir Keith Joseph, Ramanujan, Ludwig Wittgenstein and W.B. Yeats.

While Professor Fitzgerald visits history, and his imagination, to speculate about historical figures he never met, most of whom lived and died before autism and Asperger's were known to the world, parents in the real world today struggle with the real challenges of caring for, raising and preparing their autistic children for a future without them.

Dr. Houston, clearly enamored with Professor Fitzgerald's historical speculation, also shares Dr. Mike Fitzpatrick's demeaning characterization of parents facing autism reality who take a biomedical approach to their children's autism. He promotes Fitzpatrick's book Defining Autism – a damaging delusion:

“Parents who share the unorthodox biomedical outlook project a negative view of autism, as a destructive disease process which is sometimes described as ‘worse than cancer’.”

And he says that some parents implicitly dehumanise people with autism by describing “their own predicament in terms of grief and loss and as one of unremitting battle against the corrosive impact of autism on their child, their marital relationship and their wider family”.

Dr. Houston then goes on to point out that there is no scientific evidence, only anecdotal evidence, in support of biomedical treatments. And therein lies the rub. Dr. Houston and the Irish Times reject anecdotal evidence, direct observation by parents of their children, of real situations and people, as being unscientific. Yet, he embraces, without question, the historical speculation of Professor Fitzgerald that Darwin, and other historical geniuses, people that Professor Fitzgerald never met, most of whom died before autism or Aspergers were recognized conditions, had one of these disorders.

Parents who actually care for and raise their children, who can see the realities of their children's autism spectrum disorders, and who try to help them live the fullest life possible are increasingly under attack today. Medical authorities fiercely intent on protecting vaccine programs from ANY criticism or question dismiss as hysterical parents who see their children regress after receiving vaccines. Parents who provide ABA or biomedical treatments to help their children are accused of oppressing them by some neurodiversity advocates.

Professor Fitzgerald has built a career writing articles and books and making presentations to learned societies speculating about the possibility that people he has never met might have had either autism or Aspergers. Dr. Mike Fitzpatrick, himself the parent of an autistic child, has the incredible arrogance to to demean and dismiss parents who fight for their children, who struggle to care for them every day. He speculates, with no solid evidence, that parents efforts to help their own children has a corrosive impact on autistic people. Describing our children's realities as we see them every day is actually harmful? Meanwhile Professor Fitzgerald sits in the library imagining that Darwin had Aspergers. Dr. Muiris and the Irish Times embrace both of their evidence bare theories while dismissing the daily observations of parents from around around the world.

If you are the parent of a child recently diagnosed with an autism disorder welcome to the Topsy Turvy world of autism parenting. Parents know nothing and hurt their autistic children while purporting to help them. Professors who prowl the library speculating that historical figures were autistic are taken seriously while parents who observe and deal with their children's autism challenges every day know nothing. In the world of autism parenting every day is Topsy Turvy Day as described in Disney's Hunchback of Notre Dame:

Once a year we throw a party here in town
Once a year we turn all Paris upside down
Ev'ry man's a king and ev'ry king's a clown
Once again it's Topsy Turvy Day
It's the day the devil in us gets released
It's the day we mock the prig and shock the priest
Ev'rything is topsy turvy at the Feast of Fools!

Crowd:
Topsy turvy!

Clopin:
Ev'rything is upsy daysy!

Crowd:
Topsy turvy!

Clopin:
Ev'ryone is acting crazy
Dross is gold and weeds are a bouquet
That's the way on Topsy Turvy Day

autism

Kaufman To Sell Son-Rise In Scotland

Scotland on Sunday reports that Raun Kaufman is off to Scotland to sell parents of autistic children on his Son-Rise program. The article quotes several voices urging caution with respect to Son-Rise and Mr. Kaufman's claim including Dr Richard Mills, director of independent charity Research Autism:

"Anecdotal reports of recovery are not evidence. There have been no independently conducted, peer-reviewed scientific trials of the Son-Rise method so we cannot recommend it to parents."


The MADSEC Autism Task Force Report (2000 Rev.) described Son-Rise as:


page 6:

• Without scientific evaluation of any kind: Greenspan’s DIR/”Floor Time,” Son-Rise.

page 54:

Discussion

There have been no peer-reviewed, published studies of The Son-Rise Program’s effectiveness or outcome statistics. Son Rise: The Miracle Continues chronicles the experiences of Barry and Samahria Lyte Kaufman as they created a program to meet the needs of their young son, diagnosed with autism and an IQ under 30. According the Kaufman (1997), their son currently has a near genius IQ, and no traces of his original condition.

Conclusions

There have been no studies of the Son-Rise Program’s effectiveness. Researchers should consider investigation using research protocols. Professionals considering Son-Rise should portray the method as without scientific evaluation of any kind, and should disclose this status to key decision makers influencing the child’s intervention.

autism

GFCF Diet Treatment for Autism Unsupported by Evidence

One of the persistently promoted treatments for autism is the GFCF diet - a treatment with no evidence to support its efficacy in treating autism. We tried it with Conor several years ago with no result. Anecodotal evidence, which is available to support ANY therapy, keeps the treatment popular with parents. The GFCF diet treatment is pushed on the internet, even by some who know there is no scientific evidence to support the diet as an effective autism treatment. Unfortunately, parents will continue to spend time, money and their hopes on this and other non evidence based treatments.


"Science disputes autism's diet link

HAYLEY MICK

From Monday's Globe and Mail

May 8, 2007 at 9:13 AM EDT

TORONTO — Tina Szenasi's quest to cure her two autistic sons began with soy milk.

Ms. Szenasi switched to the milk substitute after reading testimonials from other parents who said their autistic children's symptoms had improved - even disappeared - when dairy and wheat were eliminated from their diet.

Her doctor dismissed it as farfetched. But the mother of three from Barrie, Ont., felt she had no choice but to try the gluten-free, casein-free (GFCF) diet for her boys, whose neurological disorder made them easily distressed and socially isolated. Introducing the diet "gave me a sense of hope," she says.

She quickly transformed her kitchen into a culinary laboratory. Her butterless cookies crumbled. Cakes made using rice flour were a disaster. Grocery bills topped $500 each week as she ordered gluten-free bread and potato-based milk substitutes that weren't available in her small city.

But her sons improved within weeks, she says. Now, Adam, 11, often hugs his parents and has fewer tantrums. Alex, an eight-year-old soccer and video-game enthusiast, behaves like most other kids. "He's almost fully recovered, I think because of the dietary intervention," Ms. Szenasi says.

More Canadian parents are adopting the controversial diet for their autistic children as support spreads through a fringe group of health professionals, commercial websites and chat forums. Supporters say gluten and casein are not well digested by autistic kids, who often exhibit digestive problems and food allergies.

The protein compounds, they say, wreak havoc with the children's neurological development. To eliminate those triggers, parents spend thousands of extra dollars on special foods, vitamins and enzyme supplements as well as laboratory testing in the United States.

But most mainstream scientists remain skeptical of the gut-brain connection in autism. They say there's no scientific proof that the diet works. Some doctors warn that parents' desperation, paired with the mystery surrounding autism's causes, makes the field ripe - as a top American pediatric gastrointestinal specialist put it - for "charlatanism."

"If there's nothing else that you think is going to help and you're desperate, you'll do anything," said Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto.

The GFCF diet eliminates two major food groups from an autistic child's diet: dairy products, which have casein, and grains such as wheat, barley and rye, which contain gluten. Children on the diet often eat a lot of meat and vegetables, plus wheat and dairy alternatives. Some families add vitamin and enzyme supplements.

Even supporters say it isn't clear how the diet works. One explanation involves the "leaky gut syndrome." Undigested bits of protein, according to this theory, are absorbed through the intestine into the body, affecting the brain and producing symptoms associated with autism.

To date, only one double-blind controlled clinical trial - the gold standard for health research - has tested the diet. Published in March, 2006, in the Journal of Autism and Developmental Disorders, the study found that the group of children on the diet saw no significant improvements compared with the control group. Researchers say more testing is needed because the study was based on a small sample.

"The information that's out there suggests that the diet probably does not have a substantial effect on children's behaviours," says Lonnie Zwaigenbaum, a University of Alberta associate professor and director of autism research at Edmonton's Glenrose Rehabilitation Hospital.

Yet almost every parent Dr. Zwaigenbaum sees has either tried the GFCF diet with their autistic child or heard of it, he says. Parents are leaping ahead before science has definitively proved whether such a treatment works, he says, because there are compelling anecdotal cases of improvement.

Autism's causes have long stumped experts. They know that genes play a major role - but increasingly, with diagnosis of the condition on the rise, researchers are looking to environmental triggers including prenatal hormones, toxins, food allergies and infections. As a result, treatments such as the GFCF diet, which focus on removing such triggers, are gaining ground.

"It's word of mouth," say Paul Cutler, a family doctor based in Niagara Falls, N.Y., who works one day a week in Burlington, Ont. "Thanks to the Internet, they're finding these alternatives."

About half of Dr. Cutler's 200 autistic patients are Canadian, and they travel to his offices from across Ontario and Quebec. He charges $150 for an initial assessment that includes a battery of tests - a cheap fee compared with other doctors, he says.

Dr. Cutler has been trained by a group called Defeat Autism Now! (DAN!), which holds annual conferences and instructional sessions for doctors from across North America. The group recommends biomedical treatments for autism that focus on intestinal problems, nutrition, detoxification and allergies. Twenty-six Canadian doctors are listed on the group's website as DAN! practitioners.

They include Wendy Edwards, a pediatrician in Chatham, Ont., who found the diet four years ago when her three-year-old son was diagnosed with autism. He improved so dramatically, she says, that the diet is now the first thing she recommends for autistic patients who travel to see her from across Ontario and even Manitoba. She also encourages other biomedical treatments, including supplements such as vitamin B6, magnesium and dimethylglycine, or DMG.

Some research suggests that up to 40 per cent of children with autism spectrum disorders could benefit from dietary changes, including the removal of gluten or casein, says Timothy Buie, a pediatric gastrointestinal specialist at Massachusetts General Hospital in Boston.

But Dr. Buie, who runs one of the largest practices for children with developmental disabilities in the United States, warns that parents may place so much hope in the diet that they falsely believe their child has improved. "The placebo response is gigantic," he says. "Parents can interpret a benefit because they want their kid to do better."

While parents travel to find doctors, they also ship urine and stool samples to U.S. labs to be analyzed for nutrient and vitamin deficiencies - tests that aren't widely available in Canada. One parent interviewed for this story said she paid up to $300 (U.S.) each for several lab tests.

Some in the industry may be peddling false hopes for big profit, critics warn. "People may choose to recommend things therapeutically that are in their financial interest," Dr. Buie says. "You walk out of a doctor's office and they give you a list of vitamins that they happen to be selling in their outside room."

Other doctors worry about the role of for-profit labs. "Many are not bona fide labs and they're making a fortune," says Dr. Roberts at Sick Kids in Toronto, who adds that parents have handed her results from U.S. labs that don't make any sense.

The Internet is where many parents go to share information, recipes and contacts. Brenda-Lee Olson from Terrace, B.C., moderates a popular online group called GFCFrecipes, whose membership has multiplied tenfold, to 3,400, in the past six years.

"It helps to know certain tricks," says Ms. Olson, who says many people don't believe her 17-year-old son is autistic, thanks to the diet. "The only way to get that information is from other parents."Ms. Szenasi says she'll keep her children on the diet despite the cost. She now keeps a folder stuffed with GFCF diet material at the health-food store where she works, so she can hand it out to other parents."