To the People Who Call My Child's Autism a 'Tragedy'
Well, I’ve got my gander all up again. Thanks a lot, Facebook.
Apparently, there’s more and more misinformation floating around “the Internets” about a supposed link between childhood vaccines and autism, even though the medical and scientific communities have disproved such theories time and again.
Somebody posted something about it on — where else? — Facebook, and normally I would scroll past and ignore. Except I didn’t, given who posted it. And then at least two people commented on the original post, referring to autism as “tragic” in their comments.
Immediately I wished I had just avoided Facebook.
How can I stay quiet over that? When my son’s diagnosis becomes a reason for others to deem his life a tragedy? I write a lot about disability, autism, inclusion, and about how all people — despite our differences — deserve to be treated with respect and dignity.
I’ve written recently about my friend who has been told that autism is a “made-up disease” and a cop-out for parents who don’t want to discipline their kids. Dealing with people’s ignorance is difficult, especially when you’re seeking to educate the uninformed about invisible disabilities. But there are just as many assumptions out there about disabilities (both invisible and visible) on the other end of the spectrum.
And calling autism a “tragedy” is one of them.
Parents of kids with disabilities can be caught between a rock and a hard place where we’re damned if you do, damned if you don’t. Ignorant people may think it’s all made up. That our kids (or possibly we, in an attempt to get out of responsible parenting) are faking it. They may view our children as selfish, entitled and defiant “brats” who just need some firm, heavy-handed discipline.
Other people — perhaps thinking they are being compassionate — would turn around and refer to my child as a tragedy. So I feel it’s imperative that I set the record straight. My child is not a tragedy. Neither is his diagnosis.
Autism Is Not a Tragedy
My child has autism. Autism is neurological. As a result, he has difficulty learning basic social skills and in social settings. He has pronounced sensory issues. He deals with anxiety, inflexibility and irrational fears.
He is also highly intelligent. He is tender-hearted. He is funny and lovable and possibly the most creative person I’ve ever known. He is alert. He notices and remembers everything. He sees the world in a completely different light than anyone else I know.
He is not a tragedy.
Theories abound, and there are many vocal proponents of both sides on the autism/vaccine debate. I don’t get into the arguments too often. But I feel confident saying, looking back to my son’s earliest days and knowing now what I didn’t understand then: My son was born with autism.
When he was mere hours old, he opened his eyes wide and soaked up the world around him like I’ve never seen an infant do. His sensory differences were already apparent, the way he curled in on himself, the way he was instantly soothed when tightly swaddled, the way he had to be tightly held.
So, no, I don’t believe vaccines caused his disability. And I’m opposed to the anti-vaccine movement. That’s the side of the fence where I come down.
But despite whichever side of the controversy you land on, please don’t make the mistaken assumption that autism is a tragedy. That’s not to say it’s a bed of roses. Life with autism can come with challenges. It can be stressful, and hard to manage and can bring its own form of grief.
But autism is not a tragedy.
The Other Side of Ignorance
When Travis was a first-grader, I took him to try out for the music magnet program in our school district. Being a musician, I already knew he was gifted musically, but he needed to pass the official test in order to be accepted to the program. He didn’t do well. He was distracted. He acted silly and refused to cooperate with the teachers in charge. I wanted to escape as quickly as possible.
I still remember how one of the teachers looked at me. She knew autism was real, and she didn’t judge Travis for his poor behavioral choices that day. She understood, or so she thought. But then she gazed at me, shaking her head, and I recognized the look in her eyes. It was pity. Complete, unadulterated pity. The kind of look that says, “Poor you.”
It infuriated me.
Sure, it was a difficult time for us. I was embarrassed and stressed out. I was fighting an uphill battle every day as I tried to learn more about autism and to parent accordingly. But I wanted compassion and understanding, sympathy and a helping hand. Not pity.
What’s the difference you might ask?
Compassion and kindness show respect for another person. Being willing to put yourself in another’s shoes, to lend a hand or an ear, to offer assistance and to stand up for the marginalized — these behaviors all are evidence of the belief in basic human dignity.
By contrast, pity can reduce a real live human being to nothing but a tragedy. With an attitude of “too bad, so sad.” I feel people who pity see only the disability, not the person.
Those who would call my son’s autism a tragedy see only see the diagnosis and its challenges. They completely ignore and dismiss the real boy living inside. Once out of curiosity, I asked Travis, “If you could take away your autism, would you?” He thought about if for a while and then answered honestly, “No. Because then I wouldn’t be me.” It’s a pretty healthy perspective if you ask me. Not a tragedy at all.
So please quit calling my son’s autism a tragedy.
It can be a challenge.
But my son is not a tragedy because he was diagnosed with autism.
Not at all.
He is a human being, who I believe was created in God’s image. He is fearfully and wonderfully made. He is the sunlight on a cloudy day.
He is a wonder.
And I for one, am thrilled he’s in the world.
Follow this journey on Sheri Dacon – Lyrics for Life.
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