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A friend of mine recently sent me an article from New York Magazine that discusses the neurodiversity movement, which believes that society should accept autism as "another way of wiring the brain." This is a topic that I am often faced with as a researcher trying to understand the neural basis of autism with the long-term goal of developing more effective treatments. Here is the ethical dilemma...
Currently, autism spectrum disorders are lumped into one category. Whether this is appropriate or not is topic for another entry, but does create a circular problem in that we recruit participants for our studies attempting to understand the neural basis of ASD based on a behavioral diagnosis. However, given the variety of behavioral symptoms across the spectrum, it is possible and in fact probable that the brain basis of Asperger's Disorder is different from that of lower-functioning autism. Additionally, though few would argue that the population that would benefit most from the research is children who have severe impairments, there are many ethical and practical reasons why these individuals are often excluded from studies.
Ethical Issues:
1. Consent. Since 1976 Informed Consent has been a requirement of all ethical research studies. This means that the participant has to be given enough information about the procedures and risks in the study in order to make an informed decision of whether they wish to participate. These consent documents have to be written in language that is comprehensible to the participant based on their age and reading comprehension level. Finally, the participant himself (or herself) has to give voluntary consent free of coercion or undue influence, meaning a parent or guardian's consent is not sufficient.
Thus, it is often difficult to create documents that describe the research procedures in a way that would ensure that the participant is giving voluntary informed consent.
2. Children and people with disabilities are protected populations. In general this means that according to the National Commission for the Protection of Human Subjects these individuals can only be involved in research studies if they are the only population that can be used for the study, the study poses minimal risk and has a strong benefit directly to the individual.
Therefore, it is extremely complicated and difficult to get approval for studies with these populations as again ASD is currently thought of as one group of individuals.
Practical Issues:
1. Often times research requires the person to pay attention to a task. Do a task for an extended period of time. Or do a task that requires a certain degree of cognitive skill. These requirements often makes it practically difficult to include lower-functioning children in these studies.
I realize that I have somewhat digressed from my original topic of neurodiversity, so I will get back on topic. Do higher functioning people need to be "fixed" or should society accept them for who they are? My two cents...
We all have strengths and weaknesses and hope to be appreciated for our strengths. I often give the example that I am tone deaf. I will never be an opera singer. Luckily for me, musical talent is not required on a day to day basis in my work and home life. It is not something that has limited my ability to have a successful career, make friends, or find a mate. Alternatively, the social and communicative deficits that define autism spectrum disorders create road blocks to these life goals. I have spoken with many individuals with Asperger's Syndrome (even very high functioning people) who feel unfulfilled because of their difficulties in finding a job commensurate with their intellectual level as a result of difficulty with the interview process, and difficulties in sustaining friendships and romantic relationship as a result of their difficulties with communication and empathy.
Thus, though I commend the neurodiversity community for promoting self-esteem in this population and encouraging acceptance by the general population, it is also quite distressing for researchers like myself who are working tirelessly and often thanklessly to understand and develop treatments for autism spectrum disorders to be told that their life's goal (which I believe to be quite noble) is being opposed by the exact population we are trying to help.
As a final thought, as research continues and we get closer to a "cure" for autism there will certainly be an ethical dilemma of how to treat the deficits without loosing the savant abilities and creative thinking that is often present in conjunction with the social and communicative deficits. We certainly would not want to deny the world of people like Bill Gates and Albert Einstein.
Just my two cents. I look forward to your opinions on the topic.
