Spectrum, people, SPECTRUM

6 Feb

Maybe you’ve heard this report which came on NPR’s Morning Edition yesterday.

It includes the heartbreaking account of a man in his late 50’s who has autism as he describes his inability to have a relationship, hold down a job and his isolation. He is donating his brain tissue to science after his death.

That last sentence is the crux of the story: there is not enough brain tissue to conduct autism research.

However, it is the first sentence that tends to grab us as parents. And it is the testimony of one individual on the spectrum that paints a picture to the ignorant that all life with autism is loneliness, isolation, joblessness, co-dependency and overall lack of value.

This report does good, it acknowledges that research to help improve the lives of those living with autism would be aided by more people signing up for the brain tissue banks both with autism and without, even for their young children should these children unfortunately pass away young.

It also does some kind of disservice because it fails to mention the broad spectrum of autism diagnoses. Even a couple of seconds of mention that the poor man profiled here is not the standard-bearer for autism, because there is no standard-bearer, would have been appreciated.

In the comments section there are individuals who explain they have autism spectrum diagnoses and do not feel the same level of desperation and despair, however, their voices are drowned out and being in the comments section, are not as widely acknowledged.

Most interestingly is the assertion in the comments over and over that people with autism are incapable of empathy and that empathy cannot be taught, however, the man profiled in the article himself is found as articulating this:

His hope, he says, is that researchers will find something in his brain that leads to a treatment or cure for autism so that someday children “wouldn’t have to go through the hell that I went through and still continue to go through in my life.”

Which if that doesn’t indicate empathy, I’m not really sure what does.

People who have little to no contact with those with autism, or who know everything they know about it solely from news reports, I believe need to have the idea of spectrum re-emphasized constantly. I still get asked regularly if The Princess counts cards. Or what her “special power” is. We have more than just a deficit of brain tissue in the country, we have a deficit of knowledge and most definitely, compassion and empathy from those whose lives are not touched.  So, I would ask NPR and all news outlets mainstream, independent and otherwise, to please include in their reporting that word “spectrum” and an explanation that not all individuals with autism are affected equally. We need to teach understanding and empathy to those not affected as well, and these organizations have a responsibility to report accurately, this will go a long way in doing just that.

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