Autism inseparable from personal identity

The Oconee Enterprise, May 11, 2017:
Dr. David Lewis

Many individuals and families impacted by autism consider preventing or eliminating the disability a disturbing concept. A research associate of mine diagnosed with a form of autism called Asperger’s Syndrome, recently shared with me his views on why this is the case. It explains why people on the autism spectrum often refer to themselves as ‘autistic people.’ Putting their disability up front as a defining characteristic is their way of demonstrating that they consider autism inseparable from their personal identity.

As with all disabilities, providing the kind of support and services autistic people need, at least to some degree, requires understanding how they relate to their limitations. Recognizing autism as an inherent component of who they are as a person, therefore, creates special needs among those who hold to this view within the autistic community. It also adds to the challenges the medical community and scientists face. What should they do when preventing, treating and even discovering what triggers autism are perceived by many autistic people as morally tantamount to curing homosexuals of their “disease?”

Dr. Lewis’ article posted in The Oconee Enterprise – Click to enlarge epa climate change

As bizarre as these concerns may seem, I get what they’re saying. I have trouble myself distinguishing what I understand as symptoms of Asperger’s Syndrome from what may be some of my associate’s personality traits. Given that fact, it’s even disturbing to me to think of someone administering some drug, or performing a medical procedure, that may change his personality.
If I can grow to accept someone’s quirks or disabilities as part of who they are as a person, I can only imagine what they and their families must feel when faced with the prospects of them undergoing certain treatments. Take gene therapy, for example. If the lines between autism and personality traits become blurred, then how do we differentiate repairing or replacing genes associated with autism from employing eugenics to raise the average IQ of our population?

This conundrum is further exacerbated by the fact that certain aspects of autism can be beneficial at times. Someone with Asperger’s Syndrome, for example, may burden himself, and others, with an all-consuming interest in a particular topic. “Curing” it, however, may diminish their ability to reach certain goals when their level of interest becomes more “normal.” This is not to say that autism isn’t a disability. It just means that there are grey areas where prevention and treatment of autism may create ethical dilemmas.

My associate believes that many components of disabilities under the umbrella of autism are difficult to define. And, as with any area of research funded by the federal government, he believes scientists and the autistic community need to engage in discussions such as this one. Namely, where is autism research headed, and what are the ethical, moral and social ramifications going to be?

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David Lewis, Ph.D.

Former U.S. EPA Research Microbiologist

David Lewis is an internationally recognized research microbiologist whose work on public health and environmental issues, as a senior-level Research Microbiologist in EPA’s Office of Research & Development and member of the Graduate Faculty of the University of Georgia, has been reported in numerous news articles and documentaries from TIME magazine and Reader’s Digest to National Geographic.

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One Comment

Dorito Reiss

People with autism who don’t want a cure don’t need a cure, and shouldn’t concern themselves. Those who have autism with comorbid issues like seizures, gastrointestinal issues, nonverbal, head banging, still in diapers as teens, immune system dysfunction, etc, who will never care for themselves NEED a cure.

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