Can Autism be Cured or Managed?

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Dr. Hirani’s Discussion of Research

1) ????? Readers of this debate should note that Dr. Hirani has presented NO research citations to back up her claim that she and others can cure autism. Moreover, she has presented NO research citations to support any of the treatments she recommends. All she offers are promises. This is not good enough. Individuals with autism and their families deserve facts, not mere promises. There have been countless times when claims of a cure for autism have been made, and, in the absence of research, such claims have only led to disappointment, wasted resources, and sometimes actual harm to individuals with autism and their families.

2)       It was our understanding that the experts on www.opposingviews.com would take a position and then support their position with EVIDENCE.   Mere mention of a kcal 9 News appearance should not be construed as evidence. Making a claim on this particular website that “thousands” of children have been treated and improved significantly should not be construed as evidence. ? Well designed research published in peer reviewed journals represents important and necessary evidence from a medical standpoint. ? Replicated findings, that is, other researchers obtaining similar results, is even more respectable as evidence. ? This should apply to all treatments for autism, no one should get ? a “pass” in having to support what they state.

3) ????? Dr. Hirani alludes to research that was conducted by James and colleagues and involved an assessment of metabolic profiles in persons with autism (e.g., James, Cutler, Melnyk, Jernigan, Janak, Gaylor, and Neubrander, 2004), as well as that of parents of children with autism (e.g., James, Melnyk, Jernigan, Hubanks, Rose, & Gaylor, 2008). While these studies open up an important line of research and indicate that at least some individuals may present with abnormal metabolic profiles, the findings need to be replicated by independent investigators before they can be accepted as true. Even if the findings are confirmed, it will be another huge step to figure out whether or not metabolic problems cause autism symptoms, and still another huge step to identify and test treatments to correct these problems. In fact, in the 2004 publication, it was written, “Although clinical improvements in speech and cognition were noted by the attending physician (PC), they were not measured in a quantifiable manner and are therefore not reported here” p. 1615. ?? While methylation as a treatment for autism may warrant some further research, it has not been proven to “cure” autism. Unfortunately, there are no shortcuts to finding a cure for autism.

4) ????? The ONLY research actually cited by Dr. Hirani was a post-mortem analysis of brain tissue from fewer than 20 individuals with autism who ranged in age from 5 though 44 years (Vargas, Nascimbene, Krishnan, Zimmerman, & Pardo, 2005). ? It was reported that much of the tissue showed evidence of inflammation; however, the article does not indicate that inflammation causes autism. Perhaps there are other explanations for the inflammation observed in these nonliving cells. Inflammation is a symptom with many possible causes and many different treatments—not a single disease, for which B-12 is the cure. Absent is research testing the nutrient/antioxidant hypothesis in living cells, as well as research testing the efficacy and effectiveness of the therapy itself in human subjects. ? Absent, too, is a description of what effects the nutrients/antioxidants are theorized to have on brain chemistry/cells/behavior. ? Certainly, this hypothesis has emotional appeal, ? particularly when professionals such as Dr. Hirani assert so confidently that the brain is “starving.” Note, however, that she presents no actual evidence that the brain is “starving”, that individuals with autism have any other nutritional deficiencies, or that they benefit in any way from consuming more anti-oxidants.

5) ????? Neurological anomalies noted in any one study do not justify sweeping treatment recommendations for all children with autism. ? Autism spectrum disorders are extremely heterogeneous, meaning individuals with autism have diverse symptoms in varying degrees of severity. ? In fact, it is believed that there may be different genetic pathways that result in the behaviors we identify as autism. (See the National Institute of Health’s pamphlet on Autism and Genes linked below). ? At this time, no one knows which genes cause autism, and no one knows how to do gene therapy for disorders whose genetic cause is known (e.g., Down’s Syndrome). ? This point cannot be stressed strongly enough: ? Any claims on the internet or elsewhere that some treatment is effective in manipulating, influencing, or changing the genetic structure or functioning of ? a person who has autism should be met with skepticism at this point in time. ? Perhaps, as in the case of cystic fibrosis, scientists will make progress in identifying exactly which genes seem to be at play in the manifestations of autism, but this research is in its infancy. ?

Everything and the Kitchen Sink

Dr. Hirani writes, “Try everything to see which treatment works.” ?? It is startling to encounter such advice from a medical professional. There are literally hundreds of treatments for autism, should parents try them all? ?? Half? ? And at what cost financially and emotionally? ?? Dr. Hirani recommends “methylation”, another doctor may recommend chelation and still another recommends just loving your child unconditionally. ? So it depends whom you talk to…..sigh.

Let’s put things in perspective. Are we using the same approach when talking about other conditions such as childhood leukemia?   Try everything?   Anything?   I suspect that most oncologists and parents would want to turn first to well established, evidence-based protocols and then tailor leukemia treatment based the patient’s characteristics or his/her response to treatment. In fact, a doctor who fails to provide a well established, evidence-based protocol may actually may get sued for malpractice.   

Clearly, comparing the disease models for autism and for child leukemia is like comparing apples and oranges; however, we fear that we may never get to a more universal acceptance of best practices in autism treatment when the current landscape of treatment for autism is very lucrative for many providers and a veritable “free for all.” ? There seems to be a culture that allows professionals to do whatever they want and say whatever they want. To the detriment of individuals with autism and their families, some professionals promote untested or even dangerous treatments for autism, and it is shameful that they rarely faces consequences for this, although there have been some exceptions (see below).

It can be very?difficult to accurately monitor and measure the effect of any treatment when parents or caregivers are administering two, three,?four or more such treatments at the same time.? It should be?clear that claiming any effect for any cause in such circumstances is?impossible.??One simply cannot claim that "craniosacral massage" has any effect on the symptoms of autism?simply because one has added that to a treatment?package, and the child is making progress.??The child may make the progress irrespective of the craniosacral massage, chelation therapy, hyperbaric oxygen treatment, or whatever.? ?The benefits or lack thereof of "craniosacral massage" would have to be demonstrated through?controlled research, of which there is none at the present time.?

While the temptation to “leave no stone unturned” may be emotionally appealing, children with autism cannot afford to have their time wasted, it is far too precious.

“No risk for toxicity”?

This is a RED flag. It important to point out that some individuals are allergic to B 12, and that B 12 interacts with some medications. Even if there is no risk of toxicity at the recommended dose, the method of administration presents a risk. ? With subcutaneous injections given at home, there is the potential for injections given the wrong way, in the wrong place, at the wrong time, at the wrong dosage. ? Furthermore, there are many potential opportunities for infection if the person administering the injection does so improperly. Finally, many children with autism are hypersensitive to pain and the repeated injections can be overwhelming.

A final concern

At the conclusion of her statement, Dr. Hirani writes, “The government’s role in sponsoring biomedical research is desperately needed in order to provide these therapies to every child, if they are found to be beneficial.”     The government is already sponsoring biomedical research, and so are many private foundations                                                                                                                     

What is desperately needed today in the treatment of autism is for doctors and other professionals to assume responsibility for making sure that every “treatment” they recommend to desperate parents and vulnerable children is safe, demonstrably effective, and ? grounded in credible, well designed research. ?

And a closing comment

As ASAT’s goal is to foster and promote higher standards of accountability and professionalism in the treatment of autism, we have been very grateful to be part of this critically important dialogue. ? We encourage individuals to visit our website at www.asatonline.org ? Throughout this debate, our statements have been guided by the following tenets:

· ???????? We believe that every person with autism has the right to effective and appropriate interventions and care.

·          We assert that evidence based interventions based on sound scientific research is the best means of achieving that goal.

·          We believe that evidence based interventions based on sound scientific research should be promoted.

·          We believe that interventions that are not based on sound scientific research should be considered with tremendous caution and skepticism.

·          We hope that each tomorrow will bring with it new scientific advances, expanded knowledge, and brighter hopes for our children.