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.”
