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Out of order: Being human
With the ever-expanding wealth of biological data being collected on people of all genetic backgrounds, genders and ages, we have an incredible opportunity to redefine what it is to be human, and perhaps more importantly, what we can describe as the full breadth of human existence.
Recently, I watched a news item about a boy on the autism spectrum—Niam Jain—who struggles to communicate with anyone beyond his mother, but who created beautiful abstract paintings, lauded by collectors worldwide. At the same time, in publications like DDNews, I routinely read stories about research to diagnose, treat and possibly prevent autism as a condition of human disease. (For example, see “A LEAP forward for autism” and “A ‘gold mine’ of drug targets for autism” in the February 2016 issue of DDNews.)
As someone with friends on the spectrum and who isn’t entirely convinced that he is not himself within that range, I wonder about what and who we stand to lose by treating this status as a disease to be fixed or eradicated.
Please understand, I am not suggesting we simply cut people loose. Typical Western society can be a challenge for people on the spectrum, as well as for the loved ones and caregivers who may not have sufficient resources to support their charges. Truth be told, it is a struggle for anyone, regardless of their status.
Standardized approaches to education, socialization and occupation typically fail many on the spectrum. Different approaches are therefore required to ensure that they have the support they need to live fulfilling lives.
And a big component of making those supports an effective reality, I believe, is reframing the condition less as a challenge to be overcome or a disease to be fixed, and more as another facet of the range of human experience. We all may not be able to fit the mold of conventional society, but that doesn’t mean we have little or nothing to offer.
(Please note: From here onward, I will refrain from describing autism spectrum as a condition, disorder or disease in support of my point.)
Over the last few years, I have seen reports about several different organizations that have tried to help people experiencing these challenges find employment that leverages the unique skill sets and styles that these individuals bring to the table—factors such as single-minded focus and attention to detail. Working with both the potential employee and possible employer, these groups strive to advise and devise mechanisms through which everyone can benefit, turning what could be a social challenge into an occupational advantage.
I believe that a similar ability to tirelessly focus on minutiae set me up for an early career in science and made me both a great travel companion—who needs a guide when you can travel with a walking encyclopedia—and an irritating Trivial Pursuit or pinochle opponent—yes, I do remember every card that was played. Ask me to speak to strangers in almost any setting, however, and we have problems.
As with any aspect of human existence, some will find mechanisms to thrive while others will struggle. Some will find their passions, while others will live without defined purpose. But one way or another, everyone will find a way forward, hopefully in a supportive environment.
Part of that supportive environment will likely be pharmaceutical and behavioral therapies, if only to ameliorate some of the most debilitating aspects of the spectrum. Thus, contrary to how it may sound in the above comments, I am not advocating for an end to research into the state of being, but rather for invigorated efforts with a broader awareness.
It is a natural human response to eliminate or normalize that which we do not understand—that which falls outside of acceptable limits. As our tools and technologies to explore the borders of life itself improve, however, should we not take a moment every so often to re-examine what it is to be human?
We may find that the only real limitations are in our willingness to accept new thinking and truly understand of what we are all truly capable. Just ask Niam Jain.
Note: For an interesting look at what might be possible in education and helping people find their individual passions (beyond spectrum), I highly recommend the works and talks of Dr. Ken Robinson.
Randall C. Willis can be reached by email at firstname.lastname@example.org