As a millennial and
the older brother of my sister Janey, I have surfed the internet
countless times, and I often find myself drifting to articles about
autism and other mental illnesses (if one classifies autism as a
mental illness, a debate which I will not get into right now!),
partly out of my own curiosity, and partly as a way to understand the
difficulties that Janey faces. One thing that always strikes me is
the amount of lists, sometimes poorly compiled, of famous individuals
who people speculate had autism or other mental disorders. People say
that Albert Einstein, Thomas Jefferson, Alan Turing, Vladimir Putin,
William T. Sherman, and even Abraham Lincoln could have had or have
autism. I am not sure if the people compiling these lists are
psychiatrists, but they do have a goal in mind.
I think that it is
out of a genuine compassionate desire that people say that truly
remarkable individuals throughout history have had difficulties such
as autism. Countless movies such as The
Aviator, The Rain Man,
and
A
Beautiful Mind attempt
to chronicle remarkable individuals’ lives and document their
struggles with mental illness. Even avenues such as YouTube seem to
eschew this benign praise and recognition of remarkable people with
mental differences, as evidenced by videos such as “Jake, Math
Prodigy Proud of his Autism”. And while drawing a correlation
between something like autism and outstanding achievement or skill
tries to empower the autistic community and other communities scarred
by prejudice against people with disabilities, the extent of these
correlations in modern media obscure a critical struggle of people
and families of people with disabilities: the agonizing pain of the
disability itself.
Sure, I concede that
perhaps Albert Einstein had autism, or that Howard Hughes had OCD,
and these two disorders probably shaped the greatness they became
know for. Yes, sometimes individuals with autism achieve great fame
and recognition and thus empower other autistic individuals and their
families. I know all of these things to be very true. But, pain is
the hallmark of any disability, and autism is no exception. Howard
Hughes may have created spectacular movies, but he also suffered
enormous pain everyday from his brain’s unrelenting desire for
cleanliness and compulsion. Similarly, autistic prodigies such as
Daniel Tammet can learn the Icelandic language in a week, but suffer
tremendous pain in what for “neurotypical people” are everyday
social interactions.
I
know I may come off as stiff, formal, and academic right now, and in
many ways I am. But what I have said resonates deeply with me and how
I view my sister Janey. When my mother tells other people that Janey
has autism, I want people to realize that that means Janey lives with
constant, unrelenting pain everyday. Things that most people take for
granted such as speech are tremendously difficult for Janey, and thus
she tries to cope through screaming agony or what a parent who has
not experienced autism first-hand might call “misbehavior” or
even more disparaging, “bad parenting” (PLEASE never say that
last one to my mom!). Janey cannot express even a simple desire for
something like food easily. Partly out of our human nature and our
frustration for Janey, the entire Amara family is profoundly affected
by the chronic disability that Janey has called autism. Yes, she
shows a passion for music, but that doesn’t mean she’s playing
Carnegie Hall on the weekends. If you take anything away from this
entry, it’s this: when you learn my little sister Janey has autism,
don’t let the first thought in your head be the misconception that
Janey is a savant with almost magical abilities. Let the first
thought be that Janey, like millions of other autistic people and
other people with disabilities, suffers tremendous, chronic pain
everyday from her disability and this pain has profoundly shaped her
life and the lives of her loved ones.
