Kathy Mannion
The National Bioethics Advisory Committee (NBAC) has drafted human research guidelines that may impact autism research, and consequently, autism treatment. The guidelines call for changes to current federal regulations, as well as the creation of a new standing national oversight panel. Drafted over the course of more than a year, the guidelines seek to protect people who cannot consent to treatment from the effects of certain high-risk studies that do not offer potential direct benefit to the subject. But that laudable goal may have unintended consequences. Researchers, parents and the National Institutes of Health’s (NIH’s) National Institute of Mental Health (NIMH) have expressed concern that the recommendations may impede important research on mental disorders. NBAC Chairman Harold Shapiro disagrees, contending that “appropriate ethical constraints ” will result in more public support of research.
ASAT board member Kathy Mannion is among those who testified before the NBAC about how the proposed guidelines may negatively impact research on children with autism. Following are her remarks:
“Good morning. My name is Kathy Mannion, and I represent two of my children who are incapable of representing themselves. My sons Brian, age 9 and Daniel, age 8, have autism.
Living with autism is typically a lifelong struggle for both the child and the family. Children are unable to communicate or understand language. They are unable to learn even the simplest things on their own. They engage in ritualistic, often bizarre, sometimes violent, and even self-injurious behavior, and they require constant supervision and teaching. For families like mine, life is often something to survive rather than something to enjoy. Autism is not episodic; there are no periods of normalcy; it is, indeed, a constant.
My purpose today is to convey to you the tremendous need for ongoing and scientifically sound research in the field of autism. Although the vast majority of persons with autism would be considered incapable of understanding or providing informed consent, good, ethical, humane scientific research has yielded promising advances in the treatment of childhood autism. But this is only because parents and guardians have been free to allow their children to participate in such research.
I learned many years ago while working at Memorial Sloan-Kettering Cancer Center that whenever there exists a condition with no known physiological cause or cure, desperation and vulnerability pave the way and create a haven for Pseudoscience. This is in fact true of autism. It is a field that is littered, and more accurately dominated, by pseudoscience. The presence of ongoing and scientifically sound investigation is sorely lacking and the absence of the dissemination of accurate, scientifically validated information has not only allowed Pseudoscience to flourish, but to prevail. This results in precious time lost and resources wasted.
When we first entered the world of autism, my husband and I were not at all prepared for the complex maze that we would have to navigate in order to get an accurate diagnosis and timely, effective intervention for Brian and later Daniel. They were evaluated by a vast array of professionals and were labeled speech impaired and language delayed. The unanimous recommendation was for both of them to be placed in a generic early intervention program. Although they began intervention at less than two years of age they made little, if any, progress in the first three years of remediation. During this time my questions were governed by judgment honed in medical science from my tenure at Memorial Sloan-Kettering.
Yet when I asked about a definitive diagnosis, we were told one could not be made. When I asked that the research indicated on types of interventions and their effectiveness, we were told that no research was available. The more I pushed for answers and information, the more frequently I was referred to various support groups. It was clear to me that in the field of mental health, the focus was more on helping parents to cope rather than providing them with the information they need to make informed decisions about the best possible care and intervention for their children.
It took us over three years to finally access what scientific investigation had already proven to be the most effective intervention for children with autism. Once Brian and Daniel began to receive effective intervention, they not only began to learn but they began to thrive. Had it not been for science, I don’t know where they would be today. Because of pseudoscience, I will never know where they could have been today. Brian and Daniel and countless other people with autism did not have the cognitive ability to provide informed consent to any type of scientific investigation. If parents and legal guardians do not have the right to provide consent for them, people with autism will be almost categorically deprived of the benefits that scientific investigation provides.
However, scientific investigation is the only hope that people with autism have. As a parent, I applaud the efforts of this committee in trying to protect the rights of those who are not capable of protecting themselves. I would respectfully ask, however, that the committee give careful consideration to autism and developmental disabilities where, before treatment, there are no episodes of normalcy and informed consent cannot be granted, unless by a parent or guardian. Without this proviso, scientific study in this field would be virtually eliminated. I ask that in your efforts to protect our children, you do not unintentionally deprive them of the one and only hope that they and their families have for a better life and a brighter future.”
Note: This article originally appeared in an issue of Science in Autism Treatment, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. Email us for reprint permission.
