Thoughtful House changes name and focus

21 Jul

Thoughtful House. The name is probably indelibly linked to Andrew Wakefield. Under his tenure there as director, Thoughtful House took on a focus of Dr. Wakefield: vaccines, the gut-brain connection and the like.

The focus was strong, as shown by their early conferences. The speaker list for the first conference was described by Mr. Wakefield as:

Our meeting brought together a faculty of nationally and internationally acclaimed speakers who have not only demonstrated their capacity to adapt to the changing landscape of CDDs, but who have also driven the pace of this change though their innovation, their professional integrity, their compassion, and sometimes their own personal tragedy.

The group was heavily weighted towards the vaccine-causation hypothesis.

Mark Blaxill is a proponent of the mercury hypothesis, member of SafeMinds and writer for the Age of Autism blog. Andrew Wakefield has since been demonstrated to have been unethical in his treatment of disabled children, and unethical in his research. Dr. Elizabeth Mumper is one of the leaders of the DAN movement, founder of the Rimland Center for Integrative Medicine. David Kirby is the author of Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, a book promoting the idea that thimerosal in vaccines caused an autism epidemic. Dr. Arthur Krigsman is an American gastroenterologist who took on the Wakefield theory of gut-brain interaction. Doreen Granpeesheh is the head of CARD. Dr. Paul Ashwood is a researcher at the MIND Institute.

Not surprising with Mr. Wakefield as director, the clinical focus was weighted towards gastro-intestinal investigations.

If you are interested in receiving treatment at Thoughtful House, please call us (512-732-8400) or e-mail us (info@thoughtfulhouse.org) to request a patient packet. Our physicians will meet weekly to determine whether the completed packets indicate that a child would be best served by starting treatment with Dr. Arthur Krigsman, a gastroenterologist, or Drs. Jepson or Kartzinel. Parents will then be notified of the physicians’ opinion. Patients who are referred to Dr. Krigsman will have to complete blood and stool testing and an abdominal X-ray. Once the results are received at Thoughtful House, if warranted, an appointment for a phone consultation and an endoscopy will be made. Patients who do not have symptoms of gastrointestinal disease will be referred to either Dr. Kartzinel or Dr. Jepson, as per the parents’ request. While we prefer to see patients in our offices, we understand that this is sometimes not financially or logistically possible and appointments can be made for phone consultations. (A minimum of one visit per year is required.)

The “Wayback Machine” doesn’t seem to link to old versions of the Thoughtful House research projects page. In the past, they had projects ongoing on vaccines (the “monkey studies”, for example), HBOT and horse-riding therapy. Research funded at Thoughtful House by the Ted Lindsay Foundation took on a decidedly vaccine-causation focus:

Research funded by the Ted Lindsay Foundation at Thoughtful House breaks down into three
broad categories:
• What is causing autism; are vaccines or vaccine components to blame?
• What is the mechanism of damage in autism?
• How do we treat this damage and reverse autism?

But, there has been a shift. Thoughtful House is no more. It happened a while ago. OK, it is still there in that a building and many of the same people are there, but the name changed to the Johnson Center for Child Health and Development in honor of “Betty Wold Johnson in recognition of her ongoing generous support of this community and her exceptional commitment to philanthropy”.

And, very importantly, the focus has changed somewhat.

The Mission Statement for the Johnson Center is clear:

The mission of The Johnson Center for Child Health and Development is to advance the understanding of childhood development through clinical care, research, and education.

No mention of gastro-intestinal problems or investigations are mentioned on the FAQ. Gone are the graphs from “fightingautism.org” showing the rise in Special Education autism counts.

Gone too are some of the staff of Thoughtful House:

Andrew Wakefield left Thoughtful House in Feb. 2010. He now appears to be essentially self employed under the name “Strategic Autism Initiative“.

A google search of the Johnson Center website for “wakefield” gives no hits. Maybe I made a mistake somehow. Maybe his name just isn’t there anymore, even as history.

Dr. Arthur Krigsman, a gastroenterologist, left Thoughtful House a little earlier than Mr. Wakefield. He is reportedly currently running private practices in New York and Austin Texas (near Thoughtful House).

Dr. Bryan Jepson joined Thoughtful House about 2005, along with Dr. Krigsman. He also wrote a book on alternative medical treatments for autism, with a forward by Jenny McCarthy. Dr. Jepson is now is director of the Integrative Sports and Wellness Medical Center in Austin. Autism is only mentioned in his bio, but not in the focus of the clinic itself:

Being involved in this clinic will allow him to combine his passion for integrative medicine with his love of sports and fitness. His role at the center will be to supervise the provision of services and to provide higher level pain, injury, and disease management techniques when required.

Dr. Jerry Kartzinel (once the Thoughtful House medical director of paediatric services) is still active in the alt-med side of treating autism, from his home base in Southern California. No mention on his website bio is given to his time at Thoughtful House, from which he resigned in 2007.

The Johnson Center research page now lists four projects. None of which is vaccine-causation focused:

Identification of Biomarkers in Autism Spectrum Disorder (ASD) using Genomic, Proteomic and Metabolomic Profiling: A Case-Control Study

Elemental Diet in the Treatment of Children Diagnosed with Autism Presenting with Gastrointestinal Abnormalities (ongoing)

Bone Mineral Density in Boys Diagnosed with Autism Spectrum Disorder (on-going)

A Retrospective Analysis of Dietary and Nutrient Status of Children with Autism in an Outpatient Setting (ongoing)

The Johnson Center is a much toned down version of its former Thoughful House identity. As I wrote earlier, Generation Rescue also seems to be backing away from its former self. Sure, there are still the rather shrill voices of vaccine-causation, but I have to say that 2011 is a much different year than 2006, when I first came online in the autism communities. Heck, there’s been a shift since 2009. I’m glad to see the Johnson Center make this move. An apology would be nice, but I’m not holding my breath on that one.

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18 Responses to “Thoughtful House changes name and focus”

  1. Science Mom July 21, 2011 at 16:43 #

    I don’t know Sullivan, Hewitson is listed on their staff as well as support for her “research objectives” which include vaccines. Their list of collaborating institutions, many of which, have the usual suspects employed there: http://www.johnson-center.org/index.php/research/page/collaboratingInstitutions

    • Sullivan July 21, 2011 at 17:20 #

      Science Mom,

      I had a tough time phrasing the above post. I think they are moving away from their past. They have distanced themselves from the very strong connection to vaccine-causation. I certainly agree that they haven’t yet completely abandoned it, though.

      Just as Generation Rescue. They certainly haven’t dropped the vaccine-causation message, but they’ve taken steps away from the loud stances they have taken in the past.

      Neither is an organization I would recommend to a fellow parent looking for help with their autistic child, or for accurate information about vaccine efficacy/safety.

  2. Science Mom July 21, 2011 at 20:19 #

    I had a tough time phrasing the above post. I think they are moving away from their past. They have distanced themselves from the very strong connection to vaccine-causation. I certainly agree that they haven’t yet completely abandoned it, though.

    Do you think they are re-branding themselves for a patina of legitimacy or are they really stepping away from the vaccine-autism nonsense? The former would make them more dangerous and dubious, in my opinion.

  3. Neuroskeptic July 22, 2011 at 10:48 #

    Interesting. Well spotted.

    Science Mom: I’m not sure they can rebrand themselves without also “really” changing. Because people will stop coming to them expecting to hear about vaccines, get gastrointestinal stuff, and whatever, and start to expect other things. So eventually, they’ll have to change. Maybe.

    I agree it’s possible that they could be planning a kind of bait-and-switch – attract people by looking reasonable, then try to turn them on to vaccines and chelation etc.

    But I don’t think this will be sustainable in the long run.

    Still worth keeping an eye on.

  4. Kate July 29, 2011 at 18:29 #

    Sullivan, what organization would you recommend to a parent looking to help their child?
    I have read Jenny McCarthy’s books and everywhere she does state that she’s not a doctor and can only describe what helped her kid. And it’s a fact that she rescued her son without a shred of help from the conventional medical community.
    so what a parent to do? do nothing? or try at least something?

    • Sullivan July 29, 2011 at 22:02 #

      “And it’s a fact that she rescued her son without a shred of help from the conventional medical community.”

      So, the medications that stopped his seizures. Those weren’t from “the conventional medical community”? Does that not count as helping her kid? Have you read the proposals that her kid might have had Landau Kleffner syndrome, in which case the seizure meds would be what helped her kid most?

      I’m sure there are a number of people who would agree with the idea that the 1:1 therapy isn’t medical, but it is a far cry from the therapies she has been vocal about.

      What is a parent to do? Take your kid to real specialists.

      If you think your kid has heavy metal intoxication, take your kid to a medical toxicologist.

      If you think your kid has a hormone imbalance, take your kid to a pediatric endocinologist.

      If your kid has seizures, take your kid to a neurologist.

      Consider DAN and their focus on heavy metals as an example. Why should I take my kid to someone who didn’t study toxicology, if I suspect heavy metal intoxication? Why shouldn’t my kid get the best care, rather than someone who has only toxicology to their toolbox recently, and who uses non-standard methods to “diagnose” the condition where it doesn’t exist?

      If a toxicologist tells me that my kid doesn’t have heavy metal intoxication, but DAN or someone on the internet says my kid does, who should I believe? I’ll go with the person with the background and experience.

      My kid deserves no less.

  5. Chris July 29, 2011 at 18:46 #

    Kate, you should check your local public school district for special ed. programs required by the Individual with Disabilities Education Act, then consult with developmental pediatrician and/or pediatric neurologist (we did the latter, since like Ms. McCarthy’s son, our son had a history of seizures), there are also speech/language therapists that work with autistic children, programs at many Children’s Hospitals like this Autism Center and the Kennedy Krieger Institute, and some universities have programs for autism like the ones sponsored by the National Institutes of Mental Health “Studies to Advance Autism Research and Treatment (STAART) Network.”

    And don’t forget the Autism Science Foundation, and this blog has articles on events like IMFAR, information on education and treatments.

    If you pick up a copy of Patricia McAleer Hamaguchi’s book Childhood Speech, Language and Listening Disorders you will find a list of resources in Appendix A. Also there is Laura Schreibman’s The Science and Fiction of Autism.

  6. Chris July 29, 2011 at 18:50 #

    Perhaps it is because my son is an adult and I had to find the things out myself, that I was able to find many resources before the internet. I often got good referrals from our family doctor, my son’s first speech therapist, and the special ed. program he was in (where there were monthly meetings for parents to discuss resources).

    And it was early enough that Boyd Haley was still concentrating on dental amalgams. So the quacks had not quite discovered our children as sources of income.

  7. Chris July 29, 2011 at 22:43 #

    This is another perspective: Mr. Know-it-all.

  8. Kate July 30, 2011 at 20:01 #

    To Chris: thank you for the list of resources. My question was of a more rhetorical nature..it goes without saying that parents will seek the best intervention and services possible (through early intervention programs or the school district or privately). I was questioning where a parent should turn to investigate potential physical or internal issues. And to Sullivan: it also goes without saying that most parents tend to go to “conventional” specialists first…however, I personally have grown very disappointed with many specialists (due to incorrect and delayed diagnoses; the “wait and see” attitude, etc) and know several families that have had similar experiences. The bottom line is our opinions seem to depend on what our personal experiences have been, which are often very different, just like the disease itself, and we need to be careful not to paint all alternative doctors with a broad brush. There are decent ones out there that have been helpful to some kids; it’s our responsibility as parents to be reasonable and cautious and seek answers and help for our kids everywhere we can.

  9. Liz Ditz July 31, 2011 at 00:26 #

    Kate wrote:

    And it’s a fact that she rescued her son without a shred of help from the conventional medical community.

    Kate, I’m away from home so I am relying upon memory. Forgive me if I am wrong.

    When Ms. McCarthy talks about her son’s progress, she gives all the credit to the biomedical experiments she performed upon her child (“getting rid of yeast” “gfcf-free diet” and supplements)

    However, if memory serves correctly, he was also in an intensive, well-regarded behavioral program, which I believe was ABA-based.

    Why do you think she gives the all the credit to the biomedical stuff, and none of the credit to the behavioral program?

    Why is

  10. Chris July 31, 2011 at 01:41 #

    Kate:

    I was questioning where a parent should turn to investigate potential physical or internal issues.

    Except they should actually be physically and medically possible. There should be based on reality, not marketing potential. Really, read Mr. Know-it-all.

    So sorry you had issues with certain medical providers, but that is where a network of parents in a similar situation become invaluable. I had that network from other parents who I met at the school, in therapists offices and elsewhere. I also had access to the Children’s Hospital Resource Center, essentially a library with educated help. I am also more inclined to read a book written by a neurologist (like William Calvin and Oliver Sacks) than an actress.

    I have no reason to believe that alternative doctors offer any better help than real neurologists, speech/language pathologists, occupational/physical therapist and psychologists. Especially after I had one person claiming to be a “neurologist” of the chiropractor type told me I should try cranial sacral therapy for my son!

  11. Kate July 31, 2011 at 15:59 #

    This just makes me laugh, really. She absolutely DOES give a lot of credit to the behavioral program that helped her kid..she actually donated some of the proceeds from her book to that program so that more children could benefit from it..that kind of program/therapy, by the way, that many insurance companies AND developmental pediatricians still consider “investigational”. I think my point is that when it comes to autism a lot of things can still be considered investigational. It bothers me when people extrapolate their experiences and tell me that what I saw with my own eyes could not have happened(i.e. some children benefiting from a biomedical intervention)or assume that I have not consulted or have not read publications by a number of medical professionals. Again, our opinions are biased by what we experience. I personally have found many medical professionals (neurologists, dev pediatricians, GI experts) irrelevant, helpless, completely useless and found actionable information and help elsewhere.

    • Sullivan July 31, 2011 at 16:45 #

      Nice backtracking, Kate.

      It was you who claimed that “not a shred” of help came from the conventional community. Now you are criticizing others for pointing that out. Laughing at them even.

      Are you going to laugh at me for pointing out the epilepsy drugs which made a huge impact in her kid’s life? Or just continue to ignore that inconvenient fact?

      I notice you also dodged the opportunity to respond to my questions. That’s ok. But I’d hope you’d think about them. Why should parents use non specialists to treat very special conditions? For example, In my experience, very few parents take their kid to an actual medical toxicologist before seeking diagnosis and treatment from the alternative practitioners. I don’t see alt med practitioners making referrals to specialists. What I read a lot are stories of bogus diagnostic methods and treatments.

  12. sharon July 31, 2011 at 23:42 #

    @ Kate, did you read the link Chris posted above? I am curious about your thoughts on it.

  13. Ken August 28, 2013 at 07:31 #

    Interesting website relating to Dr. Andrew J. Wakefield.

    http://www.wesupportandywakefield.com/

    • Sullivan (Matt Carey) August 30, 2013 at 05:08 #

      It boggles my mind that people support him. OK, the people whose lawsuits he tried to provide “research” for, them I can see. But what else has he done? Seriously, what has he done? He promoted the idea that the MMR causes autism, which isn’t supported by epidemiological evidence, through a mechanism that isn’t supported by evidence either. He lied to everyone in the process. OK, I can’t say that. I don’t know if he was telling the truth to someone, but to the public it was a lie after lie.

      Yeah. That’s someone I want to support/

Trackbacks/Pingbacks

  1. The Pathological Liar | Fiona O'Leary - October 4, 2017

    […] The film briefly speaks about Wakefield and his involvement at Thoughtful House. […]

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