Dear Ms. Doyle:
Thank you for your article which examined some initial research being conducted using parasitic worm eggs for treating the signs and symptoms of autism (“Study Looks at Worm Therapy to Treat Autism,” January 22, 2013). Your story depicts an excellent example of the scientific process for evaluating new or alternative treatments. However, readers should be cautioned about some of the conclusions which may be drawn erroneously in terms of focusing too much on the promising theory underlying this research versus the actual empirical evidence to date. It is important to note that there is no body of evidence yet that shows this approach or similar ones help those with autism.
Although there have been many anecdotal reports of so-called complete “cures” for autism–or in this case dramatic reductions in problem behavior such as self-injury–currently no medically or behaviorally based treatments exist which have been scientifically evaluated and shown to completely remediate the signs and symptoms of autism. We do have very effective behavioral treatments (e.g., applied behavior analysis) which help educate those with autism and improve disruptive behavior. Some medications (e.g., risperidone) have been found to help some of the maladaptive behaviors exhibited by some with autism. However, all available evidence-based treatments are effective for symptom reduction, but not necessarily for full “recovery.” The danger is that some people promote unsupported treatments and market products to individuals with autism and their families long before the science has been conducted, which is not appropriate, even if the treatment is biologically plausible and promising.
It would be helpful when presenting reports of patients’ improvement while using Trichuris suis ova (TSO) or whipworm eggs that you clarify how “improvement” was defined. For example, what was the form of the problematic behavior where improvements were noted? How were the improvements measured? Also, did it affect any other behavioral patterns in the patient? It is misleading when one reads that “by week 10, all of his symptoms had disappeared” without knowing what problematic symptoms were initially being evaluated. In this case, the researchers are referring to a reduction in self-injurious behavior, and it would be helpful for the reader to be aware of the form, severity, and magnitude of reduction in the targeted behavior. Autism is an extremely broad diagnosis, and the problematic behavior associated with it may range from mild repetitive and stereotypical behavior to cases of severe aggression and self-injury.
Unfortunately, there are many purported treatments which are continually sensationalized and pushed by professionals which lack any evidence base. Many of these approaches continue to be prescribed despite their lack of efficacy and research showing harmful effects, including deaths during chelation therapy or ruptured ear drums in hyperbaric oxygen treatments. Often these treatments continue to be prescribed and practiced without any apparent regard to their effectiveness or safety.
However, Dr. Hollander should be applauded for his scientific approach to this alternative treatment. First, he is taking an anecdotal report from a case study, running a small pilot study which is a randomized, placebo-controlled trial that has been approved by the FDA and his institution’s IRB, and he may then conduct a larger study based on the results of his pilot study to further evaluate the effectiveness of TSO on autism symptoms. Further, he suggests people do not give TSO to their children unless they are under a physician’s supervision, and that the safest way to try this therapy is by enrolling in the trial. Research studies have procedural safeguards to monitor and quickly address adverse effects if any should arise in the participants.
Overall, your article sheds light on an interesting concept that certain parasites may have beneficial effects for some individuals with autism. It is refreshing to see an alternative and controversial treatment approach being put through the initial stages of a thorough scientific evaluation from an anecdotal report, to pilot study, to potentially a large scale research project. Readers should be reminded that to date, there is no empirical evidence that Trichuris suis ova or any parasitic treatments help those with autism. Those interested in trying this treatment–or any other treatment for that matter–should wait until the results of scientific evaluations show that the treatment is indeed effective, for which subgroup of patients (e.g., may only be effective for those with specific immune system abnormalities), for what symptoms and to what extent, and be made aware of the potential adverse effects reported.
Justin DiScalfani, Ph.D. and Scott M. Myers, M.D., FAAP
Association for Science in Autism Treatment
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