There is No Cure for Autism
Ever since I was little, I wished I was an artist. I’ve always wanted to be able to draw the pictures I see in my mind with perfect clarity on a white canvas or blank sheet of paper.
Women with parasols, children splashing in puddles.
But I am terrible at drawing. Noses are askew in faces and the puddles look like milky blue blobs.
Autism is especially hard. At first though, it seems simple—almost black and white.
It’s an 11-year old boy who sleeps when he’s tired and eats when he’s hungry. He wakes when he’s rested and stops when he’s full.
When his body needs to move, he jumps up and down quickly—three, four, five times in a row.
He screams when he’s mad.
He likes music. He likes order. He likes routine.
If he has a question, he asks it. If he has something to say, he says it. He doesn’t internalize, or stew, or hold grudges.
See? Simple. No mystery here. But then I add the color; the spectrum’s crazy, chaotic splish-splashes of orange and blue and red and purple.
He’s not tired at 4:00 am.
If we let him, he would eat nothing but pancakes, ice cream, waffles, and Goldfish crackers.
He jumps in church. He jumps at the movies. He jumps in the grocery store, during science class, and in the library.
His emotional pendulum can swing wildly between rage and joy, distress and frustration, almost as though he has little or no memory of his mental state.
He is afraid of the wind. He is afraid of static. He is afraid of snow, and cold water, and for a while, orange detour signs in the middle of the street. He is constantly on guard, and he only relaxes in the middle of the night, underneath Melatonin’s watchful gaze.
He plays music constantly. He cannot breathe without it.
His expressions can be garbled–he mixes up words and phrases. He can be difficult to understand, and he often hesitates before answering a question. He has no filter.
He is rigid and unbending and inflexible. He has to eat waffles on Thursdays and pancakes on Saturdays. He goes berserk if we’re even two minutes late for anything.
And then, in the midst of the spectrum disorder’s black and white and color canvas, there is the thinnest pencil line. It haunts me like a ghost.
There is no cure for autism.
There is no cure.
He will never be cured.
Jack will never be cured.
He might always get up before the sun rises and jump around in church and ask about toilets. He might always need Melatonin to fall asleep and Clonidine to remain calm and pancakes to stay happy.
He will always have autism.
I don’t believe there is a cure because I don’t believe you can cure the way a person thinks. It’s just that black-and-white-simple for me.
Sure, there are plenty of things to help. There are weighted blankets to improve sleep. There are programs he can go to for better social skills and, when we need it, a tiny white pill for his crushing anxiety.
We have done these. We are doing these. We will forever and ever continue to do these.
But I will not search for a cure. I will not chase after the effervescent dragonflies the autism industry churns out regularly. I will not buy a hyperbaric chamber or enroll him in stem cell therapy or withhold his vaccines.
Contained within the black and white and color and pencil sketch is a final hue. It changes depending on the day; sometimes it’s the milky-blue of my muddled puddles, and other times it’s a soft, tender peach.
I will never be free of this. I will never be free of autism.
The good Lord willing, the rest of my children will move out and move on and marry and work and have children. And although I will always, always worry about them, it is not the same. It is simply not the same as worrying about a boy with a diagnosis, who can’t regulate himself enough to sleep, or be still, or take a traffic detour or listen to anything but the Beatles.
Last week, Jack begged me to buy him more CD’s so he could make more playlists. He already has a million CD’s and watching him manipulate songs into long, disordered list after list drives me crazy, so I couldn’t bring myself to buy them.
It also gets on my nerves the way he refuses to earn anything. It’s not so much that he has no concept of money—which he doesn’t—as much as the way he is learning to expect things; to receive simply because he demands.
So after he followed me around for a full day and hounded me ceaselessly to buy a 100-pack of CD’s he’d found on Amazon, I screamed at him no and he screamed back at me yes. Then I ran up to my room to hide because I am a mature adult.
I flopped on my bed and thought about earning, and autism, and progress. I decided even if he doesn’t want to earn money, there is other currency. In the spirit of baby steps, I decided he had to do three nice things for me.
Motivated by the idea of a new, shiny stack of discs, he eagerly came up with two ideas.
“For you, I will make breakfast. And put away the dishwasher.”
“Okay, you mean put away the dishes. And breakfast is fine but I want eggs, not pancakes.”
“For you I will make pancakes.”
He could not come up with a third idea, so I suggested he write me a nice note. Or, even better, he could sit at my computer and write about himself.
See, I am always desperate to learn about Jack from Jack.
The next morning he made me breakfast—two scrambled eggs and one pancake—and carefully stacked all the clean dishes from the dishwasher. Then he stomped off to the computer to write his sentences, reminding me over his shoulder that when he was done, I needed to order the CD’s.
“For my three things. I did them. The pack of one hundred.”
He hovered next to me while I ordered them online, and when he left the room, I took a quick peek at what he wrote.
My stomach just sank. It really did. Here he is, eleven years old, and the truth is he has trouble stringing together a cohesive sentence.
I am not an artist. Instead, I have to paint my pictures through words and sentences and memories and stories. Like this one:
My son is standing before me in the kitchen. He is wearing a grey t-shirt with Under Armour written across the front, and royal blue athletic shorts. He is very, very distraught, but I am not sure why.
I feel afraid, the way I always do—not of his temper or rage, I am not afraid of that yet, but a nagging, residual, unsettled fear that I do not know him and I will never really know him.
Yet I know every single thing about him; from the freckle on his arm to the way he clears his throat when he’s nervous, his favorite stuffed bunny that he sleeps with every night and how he remembers every license plate he’s ever seen.
He bangs his fists on the counter, and then erupts in hysterical giggles, only to grab his head with both hands and start screaming again.
“The CD’s! For TODAY they should be here FOR TODAY today today TODAY.”
I take him into our little office. I open my laptop and log onto Amazon and show him the date for delivery. Tomorrow.
Just like that, his storm is over, nearly as quickly as it began. He slumps against my shoulder, breathing heavily, and turns and walks out the door.
Alone for a moment, I click open his file, the one he named “Jack’s World,” and I read it again.
Not about my autism. Because it is here some things in the world are weird, stupid so scary.
Everything can get better but world changes every second minute hour day week Month year decade century and time.
I don’t know how to make it stop. It is not for my brother Joey or anyone else only for me.
The things that are important to you like if you want to go see a movie that is coming out in a few months like the peanuts movie that is coming out on November 6th witch is true and when I want so many Cds for the Beatles to play. take your time and wait.
It is chaotic—his phrases seem disorganized and scrambled—yet in between the words, he offers me order. He offers me grace. He offered a glimpse into his own scary life with autism; a world of which he, too, will never be free.
Maybe I cannot cure the way he thinks, but I can appreciate it. I can love it. I can make room for it .
I can take my time and wait for my boy named Jack.
July 27, 2015 @ 1:17 pm
I love the way you have with words! I feel you are lurking outside our window and describing my Grandson, Ben. He is almost 9 and his similarities to Jack are uncanny. He has his pancakes everyday, his nights are better with Melatonin and his days more focused with Daytrana. His licenses plates are rockets ships (Atlantis or Endevor), and music is a constant in his mind. He jumps on a trampoline in the family room so our beds will not fall down. His fears are of fireworks and every time he hears a siren he ask “what’s the emergency” . We too know there is no cure! My prayer is for understanding and patience! Thank you for helping me see with your words!
July 27, 2015 @ 3:10 pm
Wow! Your posts always leave me breathless! My son is 27 years old. Other than being much more verbal (which can be a mixed blessing), he is very much like your son. I want to tell you that it will get better and that autism will go away, but we both know that is not true. I will tell you that my son was able to graduate from college (where he even belonged to a fraternity!) and holds a regular job. He still lives with his father, but his 24 year old neurologically normal brother does, too. My son also took clonidine. He ended up being hospitalized for depression and anxiety when he tried to jump out of our car on the freeway. He was 11 years old. That was when we finally received the PDD-NOS diagnosis that explained everything we had been going through for eleven years. While obtaining a diagnosis was the impetus it took to receive the necessary emotional support special education services he needed, I still resent that it took so long and so much suffering to get there. Our marriage did not survive, but it probably would not have survived even without his diagnosis. Unfortunately, my ex-husband forced our sons to “choose sides” in the divorce, and I have not seen nor heard from my sons in 3-1/2 years.
I don’t write all of this to discourage you or paint a dismal picture. Despite our family’s problems, my son is successful. Your son (and your other children) are so fortunate to have you and your husband. Other families dealing with autism are fortunate to have people like you offering support. Know that there are many of us out there who have been there. You have our support, too.
July 27, 2015 @ 5:57 pm
Awesome as always.
Always have hope
July 27, 2015 @ 6:08 pm
There CAN be a cure for autism. There is only no possibility when there is no hope or dream of a cure. My son was headed for the court system and inpatient psychiatric long term care. Three years later, he is a happy, indistinguishable 9 year old boy. I fought for a cure. I saved my son. Autism wasn’t “his way of thinking”. It was a future limiting, painful illness.
July 28, 2015 @ 1:14 am
Today, this made me cry. I can’t explain to people how autism is for my son. But, the craziness, the focus-ness, the “I want it now” – I need it now is more like it, the inability to sleep like a regular person and how as his Mom – I can wake up when he needs me to know he is there and awake. Autism is crazy-making in my household….I get it more than my husband…because I have to. Someone has to make it ok for Nash to function like he has to.
July 28, 2015 @ 3:16 am
Your post makes me cry. How sad for your little boy that you don’t try other options. My almost 7yo (who was diagnosed at 4 1/2) is in managed recovery. The stims, the rigidness, the inability to play in groups lessens all the time as he heals. His lab work supports the behavioral changes we observe. For many there is a cure!
July 28, 2015 @ 3:25 am
Reblogged this on oshriradhekrishnabole.
July 29, 2015 @ 7:56 am
It’s hard. Hard for you as his mother and hard for Jack. I often wonder what goes through my own daughter’s head. What does she think about? What does she dream about? And I worry what will happen to her when I’m gone.
July 30, 2015 @ 10:02 pm
I want him to know it is not only for him. He is not alone.
July 30, 2015 @ 10:46 pm
well, weeping again.
yes to all of this! and thank you.
i love your last few sentences. i am waiting for my boy elijah. and that’s fine with me.
July 31, 2015 @ 4:15 pm
I wish I didn’t cry after reading every single one of your blogs! ?
August 1, 2015 @ 7:40 pm
Can I make a comment? There is no cure for life.