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.

QuickTips

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.”