"Show me the data" - broken alternative autism treatments
Dr. Anthony C. Hollander
Okay I sound like a broken record already: “show me the data,” “show me the best research designs,” “show me the replication of the research,” and, more than anything else, “show me the actual child(ren) who have made such miraculous changes (e.g. recovered from autism).”
I run into the same people year after year at fundraising walks. I see children who have been put onto pedestals as shining examples of those who have been “recovered,” or have “made significant improvements” as a result of some unproven method of treatment. Sadly, with these same children, I see the same impulsiveness, the same non-compliance, the same pushing people out of the way to get to the food tables, or onto the various rides. I hear the parents telling the child repeatedly, “Say hi to Tony, say hi to Tony, say hi to Tony,” and then giving up in the absence of compliance.
After my last two contributions to Spectrum (Winter 2010), I got several phone calls and emails from parents and clinicians. The vast majority told me that I told it just like it is. I also got a couple of calls/emails that went something like this (paraphrasing): “Hi, just wanted to let you know that I read your two articles in this most recent edition of Spectrum. Although the articles were quite good and informative, I have to tell you that with my child, these types of approaches have been very helpful.” And then the caller/emailer goes on to say, “by the way, is there any chance that you could see my child for a couple of visits, or help us out with this problem we are having with him/her?” If they are telling me that the treatment has been effective with their child, what do they need me for?
Like it or not, we are dealing with human beings when we subject these children/families to alternative strategies that have no proven track record of success (e.g. going out of the country to obtain stem cell injections). Like it or not, we are in an age of standards of best practice when it comes to treatment approaches that are provided. Like it or not, the State and Federal laws require research-based, outcomes, efficacy studies that clearly demonstrate results in the form of both internal validity and external validity results. In fact, when you read the laws and the standard of best practice, many of these documents also include what treatments do not qualify as meeting these standards. Like it or not, the same is true for insurance companies that refuse to reimburse for said unproven strategies, even though many providers do not exactly tell the truth about the strategy being employed— this being done so that some reimbursement can be obtained.
I should point out that I have worked with many children whose parents need the child to be able to go through a health/dental examination. A complete health/physical/dental examination requires the child to go thru a variety of tests with a variety of apparatus. Everything from a reflex hammer, to auscultation (where the doctor listens to various sounds of the inside of the body (heart, lungs)) to the poking and prodding of parts of the body, to the actual taking of a blood sample. As a professional, I do my job, desensitize the child to the process, and get enough tolerance on the child’s part to be able to undergo the process. Some of these children, as it turns out later on, were using my services in order to subject the child to one or more of these alternative strategies. So, I can say that I have helped in the process of many children being submitted to these alternative strategies. No, I do not refuse to help these children/families when they call for my help again.
One family I know quite well insists on the gluten-free diet for the child in question. The mother has stated that when the diet was started, there was a major change in the child’s behavior almost right away. The mother insists that the diet made the difference. I contend, since the child has had a very specific hunger issue in the past (only wanting to eat specific, unhealthy foods), that this was the first time that the family told the child “no” in a very firm manner and stuck to it. This created a situation where if the child was hungry, he would first try to steal food that was not on the diet, and do so in both the home and the school (where he continues to get away with it at times). The newly imposed structure, combined with ‘if your are hungry then you only have these new choices of things to eat,’ created a new type of compliance in the child. Given the increased incentive/motivation of the child to eat something, we were also able to get the child to use more and more words to get his food. Was it the diet, or the newly imposed structure and sequence of consequences put into place? In fact, a feeding therapist would employ the exact same method, only with non-gluten free foods, to increase the child’s repertoire of healthy foods.
I have come to the conclusion that the real culprit here is the term “it worked for my child.” Just what in the world does “it worked for my child” really mean? If the new process/alternative treatment really worked, then where is the spontaneous expressive and receptive language? If it really worked, then where is the compliance to both naturalistic cues and subtle social cues? Likewise, where are the activities of daily living skills, the fine and gross motor skills, the pre-vocational skills, the comprehension skills, the abstraction skills and so on? Conversely, if the process really worked, then what about the syndromatic/stereotypic behaviors? Is there now an eagerness to come out of aloofness and be spontaneously social? To now engage in cooperative play? To pick up the phone and call a friend and independently arrange a play date or trip to the movies? To stop engaging in self stimulation and non-purposeful play? To stop any form of self injurious, other injurious, or object destructive forms of aggression? Also very interesting is the discrepancy of reports often encountered with this term when I ask the mother, and then the father, or the family, and then the school personnel, if “it worked for my child.”
To be able to use the term “it worked for my child” there have to be some restrictions applied. For example, did it work only in one situation, but not in any other location? If so, then, to me, it did not work for the child. For example, did it work for a week or two, and then began to fade in terms of the impact? If so, then, to me, it did not work for the child. We have to adopt a systematic language, subject to the rules of the laws, rules of objectivity, rules of science, to verify just what the heck “it worked for my child” actually means. So, now we have come full circle. Standards of best practice, research-based treatments, accountability, and efficacy all mean use the process that has the best proven track record of producing “it worked for my child,” but for a majority of the children that received said treatment, not just a few.