Thursday, May 21, 2009

Lupron and the Need for Evidence Based Autism Treatments

The Chicago Tribune has published two articles critiquing the use of Lupron as a a treatment for autism and, in particular, the Lupron treatment efforts of Dr. Mark Geir and his son. Autism drug Lupron: 'Miracle drug' called junk science and Autism drug Lupron: Father-and-son team's crusade shows cracks.

As the titles suggest the focus of the second article is on the Geirs personally and the fact that several tribunals have found them to be lacking in the necessary expertise and credibility to make the claims that they have made in vaccine court cases where they have testified many times in support of plaintiffs claims of vaccine induced autism.

The first article focuses more on the science in support of Lupron as an autism treatment, or more properly put, the lack of scientific or evidential support for Lupron as an autism treatment. The Tribune article seems fair and balanced to me, describing the existence of anecdotal evidence in support of Lupron's efficacy in treating autism but also describing the weaknesses inherent in anecdotal evidence and the dangers of this particular treatment.

Non-evidence based autism treatments may waste parents money and a child's precious development time, resources that might better be used for ABA therapy, a solidly evidence based therapy for helping children overcome some of the deficits associated with autism disorders.

In the case of Lupron the Tribune also points out that direct harm may actually result from the use of Lupron to treat autism:

"Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.

These are serious, very serious dangers, and parents should think once, twice, three times before considering any treatment that exposes their child to such serious risks. They are taking a huge gamble with their child's health, safety and well being. It is not a gamble I would consider for my son Conor.

At age 13 Conor is already 5' 11" and he began the "teen years' development very early and with obvious physical changes. But under no circumstance will my son be receiving Lupron treatment or any other intrusive treatment that is not solidly evidence based and shown to be safe and effective in treatment of autism disorders. Conor receives ABA therapy and ABA based education at school.

One of the problems is that for many parents ABA is not immediate and does not "cure" in a traditional sense. It can result in very impressive and measurable gains in intellect, adaptive skills and social functioning. But ABA is subject to an ideological, and at times irrational, opposition from several quarters, often from people with no real stake in whether an autism treatment works or does not. This intense opposition creates a false impression that there are no significant therapies or treatments available so it is better to gamble with unproven treatments than to do nothing. Even Lisa Jo Rudy, a balanced and respectful commentator, blogger and autism mom routinely lumps ABA in with other non-evidence based therapies contrary to the assessments of autism interventions by several major and credible reviewing agencies. Such commentary blurs the distinction between evidence based and non-evidence based treatment.

Another major encouragement for the use of Lupron and other non-evidence based, and potentially dangerous, treatments is the failure of the medical research community to conduct research focused on understanding environmental causes and developing cures for the various autism disorders. While the Geirs' credibility and expertise have been soundly trounced in numerous proceedings the science which supposedly rejects concluisvely any possible vaccine-autism connection is not as solid as most mainstream media articles state. Even the 2004 IOM report did not state that a vaccine-autism connection had been disproven. It simply stated that the epidemiological studies to date did not support a connection but it also then discouraged, for policy reasons, the type of research that might have shown such connections.

The failure to rigorously investigate vaccine and other possible environmental causes of autism has also been accompanied by a failure to conduct research aimed at possible cures focusing on the causes found. From the days of Teresa Binstock's article in 1999 the medical establishment has preferred to pretend that autism has to be entirely genetic despite evidence to the contrary. Such an approach has helped protect from serous scrutiny the pharmaceutical industry and other industries that produce products containing toxic substances potentially damaging to the proper neurological development of children. Such an approach has also resulted in a failure to develop significant treatments and cures apart from Applied Behavior Analysis.

Most parents will not be foolish enough to believe that autism is anything other than what it is a neurological disorder which pervasively restricts their child's life and well being. Most parents will not be fooled into thinking that autism is a culture, a choice or a way of life. They will seek to treat and cure their autistic child. For many they will want a total cure not just the improvement in life skills and abilities that ABA can bring.

If this intense need continues to be ignored by the medical research establishment some parents will look to non-evidence based, and even potentially dangerous ,treatments. As long as medical research authorities abandon the field as they did with the insistence, for many years, on funding genetic based autism research only, and as they did when the 2004 IOM report expressly discouraged research that might have shown a vaccine-autism connection, some parents, unfortunately, will turn to unproven, potentially dangerous treatments for their child's autism disorder.

Fortunately, the IACC has shown with its new strategic research plan for autism an understanding of the need to broaden the base of autism research to examine possible environmental causes and contributors, including even possible vaccine connections. With such research may come the evidence based treatment that the medical establishment has failed to provide, a failure which has helped create a demand for Lupon and other non-evidence based autism interventions.

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Lisa Jo Rudy said...

Aw, heck, Harold, you KNOW I am not lumping Lupron in with Floortime!

One reason that I believe techniques like Floortime, Play Project, etc. are appropriate for many, many kids is that the research behind them is solid. The thing is, like ABA, play/developmental therapies were developed NOT just for autism but for all sorts of reasons. There's plenty of credible, medically-accepted research to show that open-ended play is a critical part of child development.

What's more, since Floortime can be conducted free of charge by mom and dad after watching videos and reading books, and it's developmentally appropriate, there's absolutely no way that any child could possibly be harmed in any way by doing floortime.

As always, I'm NOT arguing against ABA. And of course the Geiers' research is scary as #$%^. But playing with your child so as to build emotional and communication skills... I just don't see how this can be a bad thing.

Lisa (

Unknown said...

Lisa Jo

I didn't say that you lumped Lupron in with Floortime.

What I said is that you downplay the very substantial body of evidence as evaluated by several credible, responsible (American) agencies (God Bless America) that have found that ABA stands alone as an evidence based effective intervention for children with AUTISM disorders.

With respect to autism disorders there is not plenty of credible, medically accept research to show that Floortime and developmental therapies are effective as interventions for autism.

By your several references in which you indicate that ABA can be lumped in with Floortime and other AUTISM interventions despite the absence of evidence in support of the other interventions as AUTISM interventions you downplay the importance of an evidence based approach to autism interventions.

Once the insistence on evidence based approaches to autism treatment is abandoned the door is open for anything, Floortime, RDI, Son-Rise, DIR, NAET, Lupron, REIKI etc etc etc.

Please contradict me though if I am wrong. Please provide one reference to a review such as the AAP, the MADSEC, the NYSDOH, the US Surgeon General or any credible review that has found that Floortime is evidence based.

Mayfly said...

One needs to separate the beneficial from the therapeutic. Harold, I live reading about your walks with Conor along the Saint John. These walks have no demonstrative value in the curing of Conor's autism. But they are something he enjoys, do no harm, and perhaps strengthen the bond between a father and his son.
They are benificial.

The church to which I belong runs a program called E-Soccer. It puts kids with disabilities and those who are NT together. It will not cure anyone of autism. Yet many children on the spectrum enjoy it tremendously, and relationships are built. This too is a good thing.

There is no program which has been studied as much as ABA. There is no program which has the success of moving a child up the spectrum as ABA some to the point of cure/recovery.

Other programs lack such backing. But if FloorTime gets a parent to spend more time with his child, it is not a bad thing.

I believe hippotherapy to be a crock. However if the child enjoys it and needs to relate to the "wranglers". It is not necessarily bad. It is bad that many such places claim a therapeutic value and charge exorbitant rates.

One cannot due ABA all the time the a child is awake. Doing things your child enjoys simply for the joy it brings to him and his father is also a big part of life.

In closing, ABA and enjoyment are not mutually exclusive concepts. My daughter likes her TeachTown sessions at home.

Anonymous said...

Wow, maybe ABA could be used on diabetics. After all, if it can reverse encephalopathy, it has to work on peripheral neuropathy, too.

Unknown said...

Anon 11:46

I missed the part where it says ABA can reverse encephalopathy. Perhaps you can refer me to that section. In the meantime this is what ABA can "do" according to the American Academy of Pediatrics:

"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4"

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders