• Sun, May 4 2008

Biomed, Anecdotal Evidence, and Thoughtful House

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.

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  • http://autismspectrumdisorders.bellaonline.com Bonnie Sayers

    I have been a member of TH yahoo group for many years. I wanted to understand more of what these parents are doing and the outcomes. Many questions posted there and recently some newbies were not happy that they were not getting answers from others. Jane used a term no one really liked and now I have to find it before I go nuts. (question fatigue)

    Discussions of late are on sending urine samples to France, priobiotics, how to treat diaper rashes, anesthesia for tests, using pentasa and also B12 shots and how to dispose of the syringes.

    I did like the article in the Autism Aspergers Digest last year that was Karyn Seroussi interviewing Dr. Krigsman and even Matt’s Dev Ped who is part of the feeding team read it when she was here for a home visit.

    I now know all that goes into getting a pill cam and all that other stuff and would never put my child through that. I was contemplating maybe B12 shots someday for my younger son. They also talk about epson salt baths, which we do and taking melatonin. They talk about school districts

  • http://autismspectrumdisorders.bellaonline.com Bonnie Sayers

    I do not have Jenny Mc Carthys book and do not plan on getting it. I just put the new book that was featured in the latest edition of the Autism Aspergers Digest called no more meltdowns by Jed Baker and two books I want to read next that I have are – What you can do right now to help your child with autism and the natural medicine guide to autism. Then it will be More than Words. Currently reading Marilu Henners book for a review elsewhere that has nothing to do with autism.

  • http://www.autismvox.com Kristina Chew, PhD

    Interesting…….Charlie takes melatonin too but that’s the only supplement we use now. I was reviewing our food bill the other night and it did occur to me, maybe he’s so healthy because he’s got a really good diet (“special” or not”)—-all that sushi, vegetables, fruits, soybeans, minimal sweets (he was loving soy ice cream until a month ago and now we have two untouched containers in the freezer).

    I have followed a lot of the biomed over the years because of staying in touch with other parents who still do it. None of them would say their child has “recovered” and they all have also done lots of ABA, auditory integration, detox via the infrared sauna, B12 shots, chelation (intravenous), intravenous immunoglobulin therapy, and more.

    I’ve read Mccarthy’s book and wrote it here, and have a few more things to say—currently finishing A Real Boy by Christopher Stevens.

  • http://autismspectrumdisorders.bellaonline.com Bonnie Sayers

    I might have to get A Real Boy since he is the same age as Matt, although I really need some insights into puberty and masturbation, so a book from someone whose child has been there already might be better. Off to read your review of Jenny’s book and then have to do another lecture and print out more stuff from Stanley Greenspan. The course was extended to May 24th from the 9th, which I am very happy about.

  • http://daisymayfattypants.blogspot.com Emily

    Thoughtful House is literally about two miles from where I live. What they do there is a travesty. They have purposely set up in a part of town packed with people who live in this area because of the services available through the school district for children with developmental disorders. These parents are sitting ducks for a place like Thoughtful House: emotionally invested, wealthy, of a “fixer” mentality, helicopter-parent tendencies, and a built-in susceptibility to this nonsense.

  • http://daisymayfattypants.blogspot.com Emily

    Also, just FYI, it’s the Austin American-StateSman.

  • http://www.autismvox.com Kristina Chew, PhD

    Fixed! (the missing “S” that is)

  • http://mayfly mayfly

    I know many parents who do alternative treatments. I talked to one who had done 20+ HBOT treatments yesterday. They said they didn’t make much difference and were surprised because so many had raved about them. I then said I couldn’t see how the treatments would palliate autism, they said sometimes you have to think with your heart and not your head.

    Another person switched from a local Dan Doctor to Thoughtful House. He says his son’s stools are well-formed for the first time by being put on the “Specific Carbohydrate Diet”. He had made great strides before and now plays with some select children

    I know of another couple diagnosed about three years ago who shows little sign of being autistic today. He went through the Dan protocol.

    I told the parents of the first boy about TeachTown. They were very eager to try it and thought ABA was a more effective intervention than biomedical efforts. These they thought had been somewhat, but not entirely successful.

    On the second couple with the so who seems recovered. I don’t anything could convince them their ABA efforts were for naught.

    On the third person who had runny stools all his life. His mother is convinced everything else will get better now that the intestinal problem is fixed.

    I also no another child who wnt from verbal to non-verbal while on the DAN protocol.

    These kids were diagnosed at an early age. Some have made the jump from apparent LFA to HFA which is part of the HFA aetiology. All started early intervention programs due to their quick diagnosis. This is the real reason for their progress. Their parents believe it is the combination of biomedical and early intervention.

    We dabbled i biomedical (diets, enzymes, nuthera, epsom salt baths, probiotics) but saw no effect. A Dan doctor has explained the failure as not going through with chelation. I could not bring myself to do that.

    I do sometimes wonder as I see other people’s children make great strides whether giving up on biomedical was the right thing to do. I tell myself there is a difference between children who are truly LFA and others who seem so at first. But I must admit when I ear them talking with their parents, I wonder whether I’ve done the right thing.

    The testimonials of people one knows can so easily outweigh science in our hearts.

  • http://mayfly mayfly

    The mother of the child with the bowel problems who is a thoughtful house parent is indeed consumed with her child’s recovery. She loves her son very much and is desparate to assure his future

  • http://www.autismvox.com Kristina Chew, PhD

    @Bonnie,
    Am almost on the last chapter of A Real Boy and have not yet read anything about entering puberty—will write about the book more fully when I finish.

    @Emily,
    So does the school district in the area where Thoughtful House is offer particularly extensive special ed services?

    @mayfly,

    we could never attempt chelation either, and when we decided not to, the DAN! practitioner that we were seeing lost interest in us (in Charlie).

  • http://ppdnos.blogspot.com/ Laura

    I cringe at the thought of all that money, and how it could be better spent.

    As for Charlie, right, there was ABA and speech and whatnot, but don’t forget: autism is a state of developmental delay, not developmental stasis. The progress you observed could be, in part, some of those synapses connecting according to their delayed genetic destiny. In my mind, that’s the challenge in determining what works.

  • http://daisymayfattypants.blogspot.com Emily

    Kristina–Yes, it is known for its special ed programs. It’s adjacent to a larger metropolitan-area school district that is NOT known for alacrity in providing services. But the district we’re in is comparatively stellar, starting with children at age 3 on up. We, for example, have *never* had to argue about getting a service we thought we should have but weren’t getting. There is a district autism specialist who attends every ARD and who always offers in-home visits, etc. They’re dedicated to each child with special needs and really go out of their way to ensure support.

    It’s a very wealthy district, but in Texas, public funds get “Robin Hooded” out to other, poorer districts, so only about half of the taxes stay here in this district. This translates into a need for a lot of fundraising to cover services here, from librarians to nurses to special ed aides, and that fundraising gets done in huge amounts because so many people here (FYI, not us) have so much money. I work these fundraisers because our son benefits from this money and because we don’t have thousands to give ourselves. I also volunteer several times a week at the school; there is a heavy rate of volunteering among parents in this district. Thus, we have everything a school district should have: heavy parental involvement, successful fundraising, dedicated professionals, and tax money. It’s like public school nirvana around here.

  • Regan

    Mayfly’s description, as well as just my own observation of children around here who share the “autism” label, speaks to the heterogeneity of the situation.

    I’m pretty sure that outcome is based on more than any particular treatment. FWIW, I don’t use ABA as a “treatment”, but as a tailored way of teaching and adjusting, based on analysis of the collected data. I would be foolish to not factor growing up in there, but it has been helpful, as long as I apply it the way it was intended, with the analysis.

  • http://daisymayfattypants.blogspot.com Emily

    I think growing up is incredibly important. It simply makes a big difference, regardless of your level of neurotypicality. I caught myself just a couple of days ago expecting that TH would outgrow some of his body-space issues in a couple of years. I’m simply anticipating that as he matures, grabbing other people without warning will become less of an impulse.

  • http://www.autismville.blogspot.com/ Autismville

    Jack is going on five and I just recently noticed that he no longer sucks his thumb or needs his blue blanket. He stopped completely on his own … He’s growing up right in front of me.

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  • Karen

    I live in Lakeway Texas (30 min from Austin) a few miles from Thoughtfull House. May I ask what shcool district are you refering to? LTISD?