Yesterday was an emotional day for the autism community in our country.
Actually, I should say communities; we are not a united bunch by any means, with a myriad of issues dividing us.
But that’s for another post.
Yesterday there was a congressional hearing on autism – the first one in a decade – and just about anyone touched by an ASD one way or another knew about it.
I sat at my computer and watched as a panel – made up of a variety of experts and advocates, including a gentleman on the spectrum – took to their microphones for their allotted five minutes and spoke from the heart about their personal experiences with autism while urging our congress to act on behalf of millions of individuals who are diagnosed and living with this spectrum disorder in America.
We may agree to disagree whether or not everyone on the panel deserved a voice but the bottom line is that no matter what your personal convictions about autism are, everyone up there was passionate about their individual truth.
That being said, this is not a post about vaccines and this is not a post about genetics.
I am not here to argue the potential causes of autism or whether or not you can cure it or whether or not you should want to.
I’m not here to compare the various degrees of autism and the subjective challenges each individual on the spectrum and their families may face.
There are plenty of blogs addressing those issues, so if that’s what you’re looking for, I urge you to move along.
What I am here to talk about is a word that kept coming up at the hearings yesterday, a word that I’m having significant trouble digesting, especially as it relates to my son with autism.
That word is burden.
Read it again.
Now say it out loud.
Now look at its synonyms:
burden n: affliction, albatross, anxiety, care, clog, encumbrance, grievance, load, millstone, obstruction,
v: bother, encumber, handicap, load, oppress, overload, overwhelm, saddle with, strain, weigh down
Not exactly a word that invokes a lot of warm fuzzies, is it?
Due to the fact that he has no understanding of it’s meaning, my son Andrew didn’t even flinch when this word came up several times during the hearing yesterday.
But I did.
And, I imagine, so did many individuals on the spectrum and the people who love them, who are already well aware that the majority of society sees them as less valuable, less worthy; burdensome.
See, while I think congressional hearings on autism are long overdue and I believe we should be addressing ASD’s on a national level way more often, I’m much more concerned with the way we address and regard autism and the individuals who are diagnosed with an ASD.
Any attempt at bringing attention to autism for the purposes of providing assistance, research, support and services to individuals and their families is diluted when we forget the most fundamental part of the discussion: the individuals themselves.
I have experienced a vast array of emotions as a parent of a child with autism. I have felt paralyzing fear, overwhelming exhaustion, indescribable pride, stubborn hope, unconditional love, lingering loneliness and unrelenting frustration at my lack of ability to help my child in the way I so desperately desire.
But I have never, not once, not even for a nanosecond, felt that my son was a burden.
I try very hard, in my work as an educator of young people, to instill in my students the fact that different is not less. I speak from the heart when I urge them to not only accept individuals with special needs, but to view them as equally valuable human beings.
So you can imagine my despair when I hear people in positions of authority refer to my child as a burden, people who have a large podium and an even larger audience.
I can’t help but think of the long-lasting negative personal and societal ramifications of using a word such as burden to describe an entire population, especially since many within said population are unable to speak up and defend themselves.
Which is why I’m doing it for them.
For them, and for my son Andrew.
Please, choose your words carefully, wisely, compassionately.
Choose your words with a sense of responsibility and respect to those whom you are describing.
Choose your words knowing that they have the power to empower or destroy, that long after they have left your lips, they continue to linger in the hearts of those you have affected.
Choose your words knowing that there’s a real person on the receiving end of them, even if they can’t tell you how that word makes them feel.
Because a conversation about autism, without regard to or inclusion of individuals on the spectrum, isn’t really a conversation at all.
At least, not one worth having.