Autism Reality

Autism Research Ethics – Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants – One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women’s and Children’s Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted “that while ineffective therapies may be harmless, they waste parents’ money and the child’s valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child’s outcome.“.

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA’s demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents’ money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


RESEARCH ON AUTISM IN INFANTS

Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT

AUTISM AND INFANTS

Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. “I think we’re on the verge of being able to do a much better job” of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

http://www.mercurynews.com/news/ci_5946767

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May 21, 2007 Posted by | Amanda J Sampson, Applied Behavior Analysis, autism disorder, autism ethics, autism research, Dr. Stanley Greenspan, evidence based interventions, Jennifer J Couper | 3 Comments

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.”

May 8, 2007 Posted by | anecdotal evidence, autism disorder, autism treatment, DAN, evidence based interventions, GFCF diet | 15 Comments

Dr Sheila Laredo’s Senate Testimony on ABA as Evidence Based Autism Intervention

[Dr. Sheila Laredo, above right, with lawyer Mary Ebert]

The Canadian Senate heard testimony from a range of individuals with diverse opinions on all autism related issues. The Senate Committee did not delve too far into the treatment issues in its recommendations, taking a relatively safe “survey” approach of pointing out that there is disagreement about the effectiveness of autism interventions and calling for more research. The Senate Committee made no effort to weigh or assess the expertise or credibility of the persons who offered commentary on the subject. Nonetheless the Senate Committee transcripts of the evidence offered is available on line and there is some very valuable information available. One particularly important witness was Dr. Sheila Laredo who explained the concept of evidence based interventions and stated clearly that no other autism intervention enjoys near the body of supportive evidence of its effectiveness as does ABA. Dr. Laredo is both a parent of two autistic children and a researcher.

Dr. Sheila Laredo, as an individual
: I am honoured to speak to you today. I am speaking as a parent of three children, two of whom have autism, as an advocate in my role as a litigant in a case, and as a researcher. I will focus my comments on funding for effective evidence-based interventions. That is in the purview of both my experience and expertise.

It is an important time to consider this as the provincial governments are starting to review their policies for children with autism, certainly, in Ontario, where I live. I feel that the federal government can play a role by ensuring that evidence-based consistent standards are developed and implemented across Canada.

With respect to my own experience, when my first child was diagnosed, our family was devastated. While my son was very verbal, all he could do was repeat what other people said. He could not respond. At the age of three and a half, he was in diapers, he had tantrums every day, many times a day, spent his time flicking lights on and off and spinning whatever he could get his hands on, breakable or not. Within months of his diagnosis, when his younger brother failed to start to speak, we knew we had a second son with autism as well.

After that diagnosis, I thought that my mother’s hat would be best served using my scientific one so that I could find an effective intervention for him. It did not take long to see that the pop literature on the internet was full of contradictory, confusing and biased information.

Instead I went to the scientific literature. I was fortunate to be able to do that. That is where I found ABA. My bias is evident. I am a physician, and a PhD in clinical epidemiology, which means that my expertise is in research methods. Despite the heat and emotions of some of the witnesses you have heard, I can tell you there is a correct way to assess the quality of literature.

In my brief, under appendix A, I provided you research materials that demonstrate that there is consensus across the medical literature, psychological literature and educational literature and that there is a hierarchy of evidence with randomized control trials being the best evidence when it comes to looking at the effectiveness of interventions.

Expert opinion, like mine, is the lowest form of evidence. That is why I have provided you with all these documents to back up what I say.

Using that knowledge, I then reviewed many of the papers that I provided to you in appendix B, including the randomized and nonrandomized controlled clinical trials of the ABA intervention. While no study is perfect, there are no other randomized trials of any research interventions, nor large clinical trials demonstrating effectiveness as ABA does. Although some have suggested that the research is biased, it is consistent across research groups, across continents, across age groups and across settings, whether it is at schools, in centres, or in homes. Other treatments like facilitated communication and auditory integration have not held up to scientific scrutiny, and other interventions have had no research at all.

Despite these comments, I have absolutely no stake in ABA. The moment something else is found to be more effective, you can be that sure we will switch.

One criticism of ABA is that it has not been effective for all people. That is probably true. The fact that not all children will be cured by ABA does not preclude the fact that the majority of children will enjoy a profound and substantive benefit. My children have learned to read, write and speak without tantrums all the time and to participate in a regular class. ABA should not be held to a standard that is not expected for other interventions. When we give chemotherapy for cancer or cholesterol drugs for prevention of heart disease we strive for 100 per cent effectiveness but we do not achieve it. ABA meets and exceeds the standards we set for other treatments.

Another criticism is that ABA or IBI is unethical because it does not respect the autistic individual. I applaud those individuals that have done so well they can speak to you today despite the fact that they have not needed ABA. Unfortunately, the dismal data is that such individuals are in the tiny minority. The fortunate experience of exceptional cases should not set policy for the vast majority of individuals with autism — people like my sons.

It has been difficult for us to implement ABA. There has been little help from medical and social services agencies. We had other family members teach us how to set up and implement an ABA program. We managed, because we had many advantages. We have a highly supportive extended family. My husband and I are professionals and our colleagues have extended us many courtesies. Our children participated in the Ontario Autism Intervention Program.

With all that, we struggled. These advantages are not the case for the majority of families. Governments can help. They have started to help, but more can be done. Too little intervention will result in the majority of autism dollars being spent on providing heavily supported living or institutional living where children could have been taught to try to support themselves. It is analogous to the parable give a man a fish, feed him for a day; teach him to fish, feed him forever. However, it has been argued that ABA is too expensive.

Peter Coyte is a nationally respected health economist who has published data demonstrating that the average savings over the lifetime of a child who receives ABA, even taking into account the fact that not all children are cured and not all children even receive some benefit, is over $1,000 per child. Almost no medical interventions save money. Despite that, we undertake them. For example, diabetes costs Canadians $9 billion a year. The issue is not reallocating money from health expenditures but that we look at autism expenditures in the context of important health spending, in particular when we know a striking benefit is possible.

From Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 12 – Evidence – December 6 meeting

April 7, 2007 Posted by | aba, Applied Behavior Analysis, autism disorder, Canadian Senate, Dr. Sheila Laredi, evidence based interventions | Leave a comment