Tuesday, October 23, 2012

Notes from Paris

Latest Autism News

Sadly, another article has been published, this time in the British Cochrane Reviews summarizing research on early intensive behavioral intervention that has proceeded actuarially as epidemiologists are won’t to do, but very unlike the way experimental scientists proceed.  The people who run the Cochrane Data Base Reviews process would definitely not approve of the recommendations of the father of modern experimental medicine, Claude Bernard, who said that the most persuasive evidence for a treatment’s effects is demonstrating it can turn on or off a specific outcome, like having autism symptoms or not.  Bernard also said that the average person is meaningless because we aren’t interested in the average person, we want to be able to predict what will happen to each person who is treated.  In fact, Bernard was specifically most critical of what he called the actuarial approach to medicine, similar to the method used in life insurance policies, which is exactly what the Cochrane Reports provide.  After apparently considering the 34 studies showing early intensive behavioral intervention reduces autism symptoms in nearly all children, and enables half to function similarly to their peers.

Reichow, Barton, Boyd and Hume in Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD),” like several other epidemiologists before them, erroneous conclusion that while such behavioral interventions MAY be effective, there really isn’t much convincing evidence from the 34 published studies indicating that is the case.  This conclusion is no doubt leading Professor Bernard to trash about uncomfortably in his grave in the Cimetière du Père Lachaise in Paris where he was previously resting comfortably. Because there are an insufficient number of double blind studies with large sample sizes, they conclude we know little about treating autism.  How many successful liver transplants did Dr. Roy Calne have to conduct before medicine declared it an effective live saving procedure?  Did the FDA or Medicaid require double blind studies with 40 or 100 patients before they concluded it was effective. No?  Why not?   Just as liver transplant is life saving, so is Early Intensive Behavioral Intervention.  Before it was introduced in 1987 the vast majority of people with autism languished the rest of their lives in institutions for people with severe retardation.  Isn’t it time reasonable criteria of what constitutes outcome evidence are accepted?

Double blind large sample size random assignment studies are great for testing treatments that matter very little, but are devastating when a very costly, highly individualized treatment really matters.


Whenever possible, parents will find it most useful to include behavioral intervention methods within their normal daily routines, rather than creating specific times to practice the skills teachers or therapists or other consultants recommend.  This is because the activities will make the most sense to your child, they will be most easily fit within your lives, and finally that facilitates generalization.  Far better to practice skills once for 15 minutes when getting ready for school, for 15 minutes after school and and 15 minutes before bedtime, than setting aside 45 minutes in the evening to practice ABA procedures.

Random Thoughts

Around 1970 when I got into this field most people with autism ended up in institutions for the rest of their lives, where they were labelled “severely retarded.”  A few were fortunate enough to work on their father’s farm or if they lived in a small town, the hardware store or helping mom or grandma in the kitchen.  Since Early Intensive Behavioral Intervention has been introduced beginning in 1987, about half of kids with autism can now function in school alongside their peers and most go on to high school and some to college.  The other half is headed for functional skills training.  No one lives in institutions.  Early Intervention creates a new life for children who in the past would spend the rest of their years languishing in an institution.   When we achieve that kind of outcome with surgery it’s called a miracle, and considered “life saving.”  When we achieve such an outcome for kids with autism through behavioral intervention epidemiologists working for Medicaid try to prove it’s ineffective and medical insurance companies who try to deny coverage.  I guess the same thing happened with breast cancer treatment that saved lives.  Women had to sue Medicaid and insurance companies to receive the life saving care they deserved, because year after year they tried to deny coverage.  Same deal with autism.  So much for compassionate humanity.

What I’m Up To

I’ve been in Paris for nearly a week, conducted two days of workshops on early intervention and challenging behavior for a consortium of autism organizations and foundations at the Paris City Hall in the main conference room (photos).  A lovely 1840s building that had at one time been a private home.   I visited two terrific autism intervention programs, one MAIA-Autisme’ and the other L’ÉCLAIR, both providing ABA-based interventions for children with autism spectrum disorders and related conditions.   Terrific, well trained staff members running the programs with strong ABA credentials and Dr. Diane Fraser (in black jacket) consulting psychologist for both.  Ana Bibay (standing) directs MAIA and Cherice Cardwell and Liora Crespin direct L’ECLAIR.  

 Parents in Paris struggle to find services and have anguish for their kids with autism just like parents in Minnesota, New Jersey, England and most everywhere else.

Quote of the Week

Since I am in Paris it seems fitting I include a quotation from one of France’s greatest scientists, Claude Bernard, The experimenter who does not know what he is looking for will not understand what he finds.”  Which fits well with another of Bernard’s words of wisdom, A fact in itself is nothing. It is valuable only for the idea attached to it, or for the proof which it furnishes.

Friday, October 12, 2012

Thanksgiving and Rat's Whiskers

Latest Autism News

Another study, this time in the journal International Journal of Health Geographics reports a connection between rainfall in the Northwestern US and autism prevalence. Their study examined “whether the county prevalence of autism in the Pacific Northwest was associated with the source of drinking water for that county and whether this relationship was dependent on the level of environmental pollutants and meteorological factors in the county….We found the previously reported relationship between precipitation and autism in a county was dependent on the amount of drinking water derived from surface sources in the county. We also found a positive association between the EPA's risk of neurological disease and autism, but this relationship was only present in warm areas.”  The lead author of this study is S.S. Hilaire, about whom I have been unable to find any information, however he is apparently part of a laboratory at African Regional Health Education Centre, College of Medicine, University of Ibadan, Nigeria.  It is unclear why a laboratory in Nigeria is studying climate and autism in northwestern US.  The original study on this topic was by Michael Waldman, Ph.D., of Cornell University, Ithaca, N.Y in 2008 and reported a correlation between autism and rainfall, which was later called into question, while the present study suggests a causal relationship.  It is difficult to know what to make of this finding.  About 58% of US drinking water comes from various surface water sources.  Among the highest in the country is a section of central Oregon. Without ongoing monitoring of possible contaminants, the alleged association with autism is not very enlightening (microbes, disinfectants, organic and inorganic chemicals and radiation).

Quick Tips

Thanksgiving is around the corner and parents are beginning to think about, and sometimes dreading, Thanksgiving dinner with all the relatives, noise and chaos that goes with it. Autism Speaks Family Services has some great leads for families to consider, including Thanksgiving activities and preparing your home and relatives for understanding your child’s needs, such as that
a person with autism often needs a getaway. Its good to prepare a place before the big day. Some ideas: set up a quiet bedroom with familiar toys, videos, books or other soothing items. Add familiar or fun sensory items: a therapy ball, a mini-trampoline, or even a squeeze toy can be a terrific calming tool. If you're inviting guests who don't know your loved one with autism, it might be in everyone's best interest to prepare them. Explain any differences or quirks that might be off-putting or confusing. Suggest ideas for how best to promote positive interactions ("Jimmy really loves trains - maybe you could bring some photos of your model layout!").  Show your child pictures of what to expect based on earlier thanks givings.  Explain what will happen to your child, who will be there and where they can go for some peace and quite.  Finally, prepare an escape plan if it’s necessary to leave grandma’s house because your child’s meltdown is disrupting everything and causing too much of a rucus.

Random Thoughts

The Center for Responsive Politics, a non-partisan organization estimates that the cost of the 2012 Presidential campaigns will be around $5.8 billion dollars.  That would be enough money to provide a year of 30 hours per week of ABA intervention services for 52,000 children with autism and get them well on their way to better lives.  I wish we could say campaign ads did as much good.

What I’m Up To

I was invited to speak at a retirement symposium for a colleague at Vanderbilt University, Dr. Ford Ebner a distinguished neuroscientist.  He is famous for studying brain plasticity using animal models, specifically rats.  He discovered that if you trim baby rats’ whiskers from birth so they never have experience “whisking” to navigate, if you later allow the whiskers to grow back, they will never recover that lost ability.  He found that there is a critical period for learning to use their whiskers to navigate which are represented on the surface of their brain by specific groups of neurons. Once the neurons are lost because of disuse, they can’t learn normal “whisking” to navigate. Using those nerve cells spares them and creates distinct areas of the brain devoted to navigating by using their bristly little whiskers. This photo shows discrete brain cortical areas devoted to each whisker, which is pretty amazing.  That seems to be the basis of the same process in children with autism, who have a critical period between about 1 and 5-7 years to learning language and social skills.  That’s what I’ll be talking about on November 3rd, at Vanderbilt University in Nashville, “What do Ford’s Rat’s Whiskers Have to Do With Kids with Autism?”

Autism Treatment Website

For those of you who don't regularly read my Autism Treatment website, this week's update includes a wonderful article written by Diane Lento from Oradell, NJ, about her daughter Kate's 21st birthday celebration.  She tells a moving tale of a series of challenges and finally finding a terrific school based on behavior analytic principles, Institute for Educational Achievement, under the Direction of Dr. Dawn Townsend.  It's a wonderful story.  There is also an article about growing awareness of elopement by kids on the autism conducted by a group at the Kennedy Krieger Institute in Baltimore. Over half of kids on the spectrum go off on their own at one time or the other and are in danger.  Check it out, there are other goodies as well.  

Quote of the Week

“In the long history of humankind (and animal kind, too) those who learned to collaborate and improvise most effectively have prevailed.” Charles Darwin, who entered Cambridge University in 1825 this week.