Well Being

Biomed, Anecdotal Evidence, and Thoughtful House

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Whether or not to try biomedical treatments is a question that's perhaps unavoidable for parents with an autistic child today. One hears constant, albeit anecdotal, reports of a child who has “recovered“; the publication of Louder Than Words: A Mother's Journey in Healing Autism last fall by Jenny McCarthy further renewed attention on such experimental treatments as the gluten-free casein-diet, among many others.

Today's Austin American-Statesman has a long article about Thoughtful House Center for Children, a non-profit center that offers a number of alternative biomedical treatments that is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” (Thoughtful House also offers educational services including ABA.) From the Austin American-Statesman:

Since it opened in 2005, Thoughtful House has seen about 2,500 patients, officials there said. The nonprofit has attracted celebrity supporters in Austin and parents from around the world who say mainstream doctors offered them little help — and no hope — for their children. They say their children are recovering from autism at Thoughtful House.

But government scientists, other researchers and many mainstream doctors have repeatedly challenged the theory on which Thoughtful House anchors much of its work, and they say there is no credible science behind many of its prescribed medical treatments. Those include procedures that even the doctor who oversees them at Thoughtful House [this is Dr. Brian Jepson] says haven't been proved effective on autistic children through large scientific studies, such as a drug therapy for removing heavy metals from the body called chelation that some doctors consider dangerous.

The father of the autism theory is Thoughtful House's executive director, Andrew Wakefield, a British-born gastroenterologist.

On the controversy about Wakefield and his theories about autism causation and the misconduct charges against him in the UK, go here, here, and here.

A number of celebrities and “prominent central Texans” are supporters of Thoughtful House. Former Dell Inc. executive Charlie Ball and his wife, Troylyn, are among the founders of Thoughtful House; their son has “struggled with physical and developmental problems.” The co-managing director of Thoughtful House's board is Jane Johnson of New York, part of the family of the Johnson & Johnson health care products and services company. Johnson (who co-authored Jepson's book, Changing the Course of Autism) and her husband, Chris, donated $1 million to lay the groundwork for Thoughtful House in 2004:

The Johnsons' son had intestinal problems and was seeing [Dr. Arthur] Krigsman [a pediatrician and gastroenterologist], and Jane Johnson said she became interested in supporting Wakefield's research after attending a 2001 conference by Defeat Autism Now, a program of the Autism Research Institute. The institute promotes alternative treatments for autism, and many Thoughtful House parents say they met Wakefield or heard of Thoughtful House at Defeat Autism Now conferences. Johnson, now co-managing director of the Thoughtful House board, said her son was misdiagnosed as having autism elsewhere but is actually learning disabled.

The Austin American-Statesman also notes “gaps” in state and local oversight of Thoughtful House, whose clinic “is not inspected by state or local health officials.” The cost for consultations and follow-up visits is $390, while “initial labs” are $600 to $1,000:

Families with incomes below $80,000 a year are eligible for up to $2,000 per year in grants from Thoughtful House. The aid has helped 68 families since July 2006, said Jane Johnson, who added that education and therapy for an autistic child ranges from $20,000 to $60,000 a year no matter where the child goes.

Austin pediatrician Ari Brown—who used the phrase The New McCarthyism in describing the demonization of the vaccine program in the wake of the publication of McCarthy's book—is quoted in the Austin American-Statesman as saying that the charges for services at Thoughtful House do not sound “‘out of the ballpark.'” While relying on “anecdotal evidence”—such as Thoughtful House's doctors cite in defending alternative medical practices as chelation—is, according to Brown, “OK,” this is only so “‘when it's benign and not costly. But they're really raising the ante with the stuff they're doing.'”

At one point, we tried a number of biomedical treatments and, if you had asked me if I thought they were helping Charlie, I would have said “I think so.” Looking back, I wonder if what I really meant was “I hope so”; I also always had to note that Charlie was doing a lot of other things, including full-time school in a public school ABA program, speech therapy, OT, and home ABA and speech sessions. Generally, I think it's not so easy for any parent to tease out “what is the biomedical” and “what is the education” and there's a bit of hesitancy to just say, “maybe he's just getting older and understanding more. But what price are anecdotal results—as British pediatrician and author Michael Fitzpatrick notes in the Austin American-Statesman,

As the father of an autistic son…… it surprises him that parents can be so critical about vaccines yet have “no qualms” about trying experimental therapies on their children.