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.”

Musical Talent & Public Education

Latest Autism News

Two new studies, one in individuals with Fragile X syndrome and the other a mouse model study may offer some hope.  It is far too early to tell whether these findings are really relevant to the lives of many kids with ASDs, but it worth taking a look.  Berry-Kravis and colleagues, tested arbaclofen, a drug that binds to the GABA-B receptors in the brain, with 63 individuals, ages 6 to 39 diagnosed with Fragile X syndrome.  There is about a 25% overlap between Fragile X and autism.  Half were randomly assigned to arabaclofen and half were given placebos. There was significant improvement in social function in a subgroup of 27 patients with more severe social impairment. There were a few side effects, including hives (13%) and headaches (8%).  Arabaclofen is a close relative of the drug baclofen used for treating spastic muscular disabilities. It is important to bear in mind that the participants were diagnosed with Fragile X syndrome, not autism, though there is considerable overlap in some of the symptoms.  In the other study on genetics and behavior of a mouse model of some forms of autism by Baudouin and collegues.  They found differences in Neuroligin-3 receptors in brain were associated with social behavioral differences in mice.  Neuroligin plays a role in forming synapses in the brain. It is unknown whether the behavioral measures in mice are actually correlated with social behavior in people.  Mutations of Neuroligin are rare in humans and at most would account for a tiny fraction of autism cases.

Berry-Kravis EM et. Al. (20120 Effects of STX209 (Arbaclofen) on Neurobehavioral Function in Children and Adults with Fragile X Syndrome: A Randomized, Controlled, Phase 2 Trial. Sci Transl Med. 2012 Sep 19;4(152):152ra127.

Baudouin, SJ et. Al. (2012) Shared Synaptic Pathophysiology in Syndromic and Nonsyndromic Rodent Models of Autism. Science. 2012 Sep 13. [Epub ahead of print]

Two other new studies summarized on my Autism Treatment website indicate frequency of gastrointestinal problems are no greater among kids with PDD-NOS than typical peers and that Hyperbaric Oxygen treatment produces no measurable improvements.  www.travisithompson.net

Quick Tips

Quick fixes are nearly always illusory. There are no magical mystery cures.  As with any other child, learning new skills and behavior changes among youngsters with autism comes gradually with loving patience and parenting consistency. The psychiatrist Carl Jung said it well, "If there is anything we wish to change in the child, we should first examine it and see whether it is not something that could be better changed in ourselves." Integration of Personality (1939).  Put another way, changing a child's behavior almost always requires changing what we do as parents.

Random Thoughts

There is a connection between musical interest and talent and autism spectrum disorders as noted originally by Leo Kanner as well as in Oliver Sachs’s book, Musicophilia. September 25, 1932 Glenn Gould was born in Toronto, CA, a pianist who became one of the best-known and most celebrated classical pianists of the 20th century. He is alleged to rarely practice, instead he claimed to “hear the music in his head,” from studying sheet music. He hated performing.  He was prone to behavior most considered very odd, such as cancelling a performance at the last minute and humming while performing, and wearing heavy clothing including gloves during distinctively warm weather. He had numerous rigid, unusual mannerisms and behavior patterns. Though not officially diagnosed, many experts have considered Mr. Gould to having had Asperger disorder.

What I’m Up To

I’m in the final planning stages for a nine day trip to Paris in a few weeks to present workshops to the ÉCLAIR organization [Education Comportementale et Ludique vers une Autonomie et une Intégration Réussie] Training inclusive, for parents and autism professionals, which consists of parents and professionals providing behavioral services to children with autism in France.  I’ll also be meeting with another family organization.  One day-long workshop will focus on Early Behavioral Intervention in Autism, including alternatives and brain changes underlying treatment effectiveness.  Other presentations will include Obsessive Compulsive Behavior in Autism, and Freedom From Meltdowns.

Quote of the Week

During this time of ferocious Republican attacks upon American public education, it is worth remembering how important public education is to children with autism, and that among the very first concerns of our ancestors was public education. The first American schools in the thirteen original colonies opened in the 17th century. Boston Latin School was founded in 1635 and is the first public school in the United States. Public education was mandatory in the Massachusetts Bay Colony beginning 1638. Thomas Jefferson wrote in a letter to Joseph C. Cabell, January 14, 1818  "A system of general instruction, which shall reach every description of our citizens from the richest to the poorest, as it was the earliest, so will it be the latest, of all the public concerns in which I shall permit myself to take an interest.”  [Boyd, Julian P., Charles T. Cullen, John Catanzariti, Barbara B. Oberg, et al, eds. The Papers of Thomas Jefferson. Princeton: Princeton University Press, 1950-. 33 vols.]