What if there was a cure for autism?
Last week, someone named Brian sent me the following message:
Let’s say the medical community announced they have a cure for autism.
It’s a 15-second shot in the arm. It has no side effects, and twenty minutes after your son receives it, poof! He would turn into a perfectly normal boy.
Would you give him the shot?
When I first read it, my mind went blank, like an empty sheet of paper. I’m serious. I couldn’t come up with an answer. But over the next few days I thought more and more about it.
Would I change my 12-year old son Jack and take away his autism?
Would I take away his rigidity and anxiety and impaired speech, and replace him with a boy who loves soccer and gets really good grades in a regular public school and doesn’t need to take medicine to sleep at night?
Yes. I think so. Yes.
No.
Maybe.
I don’t know.
It’s a good question—one that makes me examine my heart and my soul and my purpose and my future.
The truth is, my life would be a lot easier without autism.
I would never have to go to another IEP meeting.
I could walk right by the Melatonin in Walgreens.
I could forget about the time Jack marched into our neighbor’s house and shouted, “My mother. Would NEVER. Let us keep it so messy. Like you.”
I promise you, if this hypothetical shot was available at that very moment, I would have poked him in the arm myself. For real.
I mean, some days are bad and other days are good and right it’s kind of in-between because he won’t stop singing Ring Around the Rosy over and over under his breath. It’s driving me a little nuts, to be honest, and the other day I shouted at him to stop it before I lit my eyelashes on fire.
He looked at me blankly, and started right up again.
Ring around the rosy, pocket full of posies.
His life would be a lot easier without autism, that’s for sure. For starters, he could sleep through the night.
I mean, can you believe I have never, even once, had to wake him? I have never had to nudge his shoulder, or stroke his cheek, or call his name to lure him out of bed in the morning.
If he was a normal boy with normal sleep rhythms, I could walk into his room half an hour before school and nag at him to get moving.
Ja-ack! Come on! Time to get up.
Instead, I walk in and I see him huddled under the covers with his eyes open wide and I wonder if he’s been up all night while I slept peacefully down the hall, and I feel terrible.
He could ride the big bus to school instead of a minivan with a sign bolted to the top that says School Bus in grimy block letters.
Personally, I don’t care if he rides a magic carpet to school, but he does. He cares. And as his mother I would do nearly anything to take away his sense of loss, and alleviate a loneliness that is so palpable, I can hear it’s heart beating within the walls of our house.
So yes, I would change him.
But on the other hand, is it really such a big deal? Autism is nothing more than a neurological disorder –the unexpected conclusion of wonky genetics. That’s all.
It isn’t life threatening. It won’t hurt him.
Unless, of course, he sets the grill on fire when he turns all the knobs on at once the one single minute we aren’t looking even though we have told him over and over not to touch the grill because it’s dangerous, but he has a 7-year old mind inside of a teenager’s body and he went ahead and did it anyway.
Or he runs behind a car in the parking lot when he races up to it to read the license plate because he’s obsessed with license plates and the driver doesn’t see him and we warned him over and over again not to bolt away from us in a parking lot and I can’t get to him fast enough.
I am so scared I won’t get to him fast enough. In my dreams, I chase him. He is always inches out of my reach, and my fingers brush the back of his shirt as he races ahead of me.
Then again, I know what normal looks like. I know what it’s like to cheer on the sidelines and drag a drowsy teenager out of bed and sign a report card full of A’s and B’s.
It’s awesome.
It’s fun.
It’s expected.
It’s predictable.
No. Definitely not. I would not change him.
The thing is, it’s too hard—too breathtaking difficult and complicated—to separate the boy from his diagnosis without losing a fundamental element of each. It is like trying to figure out which came first, the chicken or the egg.
Chicken egg boy autism ashes ashes we all fall down.
It is he and he is it and neither is wholly of the other.
Jack has a sister named Rose and three crazy brothers and a dad who would move heaven and earth to protect him and keep him safe.
We love him.
I love him.
I would miss him. I would miss his autism.
I would miss him the way someone misses a phantom limb or a hand that’s lost a finger. Deep inside of my soul I would ache, and I wouldn’t even know why.
Have you ever had a favorite movie that was only in black-and-white, and then they made a color version and when you watched it again it was like seeing it for the first time? The characters were fresh and new and the details were sharper and the story was richer.
That’s autism.
I sing it. For Rose. It is a song. For her.
I guess what I’m saying is, I don’t want a boy with ruddy cheeks who runs down the field kicking a ball. I don’t want a boy who makes the honor roll and studies spelling words up in his room every night after dinner.
It’s too ordinary, and if you ask me, the world already has enough ordinary.
He is not ordinary. That’s the one thing you can say about Jack.
He is courage.
He is honesty.
He is the most interesting, frustrating, compelling conclusion of wonky genetics I’ve ever imagined.
He could change the world, just the way he is right this very minute. I believe this.
But in the end, it doesn’t matter what I think. It isn’t my question to answer. It’s my Jack-a-boo’s.
I read him Brian’s message. And this is what he said.
Probably. Maybe. I do not know. Do not ask. What does poof to mean.
Elizabeth
April 24, 2017 @ 8:46 am
I love this. I have been asked this question many times about my two sons that have autism. People ask me if I would “fix” them. The thing is, they are not broken. I always tell people that if you take away the autism, you take away their personality. I wouldn’t change them for anything.
Susie vanderKooij
April 24, 2017 @ 2:22 pm
A beautiful piece, and certainly made me wonder what it would be like….
Vickie
April 26, 2017 @ 10:59 am
That is hard because I always say that I would not change my son at all……. if I were to be able to live forever.
But I won’t and as many things that I have put in place for him, I worry that something will go wrong. He does not have siblings, he can not take care of himself, he does not understand safety, he does not know when someone is taking advantage of him and will not understand if someone were to do worse than just take advantage. He is verbal but he can not communicate if something is wrong or if someone or something is hurting him. He will out live everyone that I have set up as guardians when I am gone. He is the perfect victim for all of the horrors out there in the world. He is 26, so the hope of making any more progress is minimal. If I were to live forever, I would not change a thing about him. But someday I will be gone and he will be at the mercy of strangers,,,, THAT is what my nightmares are made of.
Beth
April 27, 2017 @ 6:51 am
Beautiful and thought provoking. What we all struggle as parents with each new article on Autism and genetics comes out. I to am torn due to both my boys having Autism and having no one to care for them after I am gone. Their Autism is what makes them who they are. I’ve tried to imagine my oldest especially without all his quirks that drive me crazy and I wouldn’t recogonize him. I love my boys for who they are and can’t imagine them any other way. I wish they didn’t have to work so hard, but it also has made them survivors. I always tell parents how lucky I am; there are parents far worse off who never get to bring their babies home from the hospital or spend months in the hospital watching their children in severe pain.
cheryl thomas
April 30, 2017 @ 5:53 am
I agree with Vicki. Someday we will not be here to protect them. I pray everyday that God would deliver my son from autism and give him his voice.My son is like “magic, like fireflies in a jar” and I would never want to lose that but then everyday he has grey clouds covering him and I see him feeling lost in his world. So yes, yes I would want the healing, either way it takes tremendous faith in God to pray or not pray for healing.
Karen Sutton
April 30, 2017 @ 1:02 pm
I hate this type of question–I feel like there’s no way to answer it. The eternal optimist in me would tell you that my son is not broken and doesn’t need a fix or cure. But if I’m honest and talking from the deepest part of my soul I would take that cure in a second. I would want my son to be without autism, no sugar coating it. He is the sweetest, most innocent 15 year old boy I know. I know the autism is why he is so childlike and the funny, sweet kid he is today. But if there were a way he could be cured, and make his way in the world like his three older sisters will be able to do, I would sign him up. If there was a way for him to live on his own someday, get married, have his own children, or have a career he would love, I would so do it. Autism sucks and I’m not going to apologize or try to make it all okay. Yes, I accept his diagnosis and love him so deeply it hurts and he is a fabulous & loving kid just the way he is. But if there were a cure? Oh yes, I’d give it to him today.
vernita
December 4, 2017 @ 7:57 pm
i have a son who is 15 years of age with AUTISM,followed normal education with help from me, he has problem of concentration,maturity,yeast over him,dandruff on his head,and so many things i can’t even think of,we have been trying to make him better since he was 5 years old,even alot of natural supplements,i have spend much money on hospital medications just to see if it can make him better on his health generally,nothing seems to work out concerning my boy,but until i met and old friend of mine who i told about my boy situation,and she refered us to one baba chale who helped her friend,thats how i got baba chale contact:(chalesolution@yahoo.com), i told him what brought me to his solution home, and he told me all i need for my boy to get cured is to purchase his autism root herbs and seed oil which i did purchase,and started to use the herbs as he told me how to administer it to my boy,to my greatest surprise after 20days my boy was totally cure and free from autism that has been an embarrassment.now he is better, today i want to spread the good news of my boys health on how baba chale save my boy. you can contact him:(chalesolution@yahoo.com or chalesolution@gmail.com) He brought hope into our family, i know he can do yours, just give him a try you will definitely see the result.