Who Should Take the Blame for Autism?
I saw another article that claimed to solve the mystery of autism last week. This time, it was gestational diabetes.
It’s always something, isn’t it? Either autism is because of advanced paternal or maternal age, or the dot-com era, or people who eat gluten. It’s the manufacturers who made Round Up.
(I’m not even sure what Round Up is. I’ll be right back.)
(Oh. It’s weed killer you use for gardening and stuff. No wonder I didn’t know what it was.)
I know it’s all in the name of research and ultimately it’s super-important stuff, but the subtext of these headlines feel, well, a little vengeful. They feel like accusations.
I’m not trying to argue that we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it and fund the programs for it and do what it takes for people on the spectrum to lead full, productive, happy, meaningful lives.
But this undercurrent of blame hurts—a lot. It hurts to think a choice I did or didn’t make contributed to my son’s condition. It makes me feel hopeless.
Even though I know—I know—there’s nothing I could have done differently, I still pause when I read things like this. I hover over them for the tiniest second before I click on to something else.
And still I refer to the mini-checklist in my mind: nope, I didn’t have gestational diabetes. My husband Joe was not even thirty when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I have never grown so much as a tomato on my own, so I never used Round Up.
On Mother’s Day in 2004, I gave birth to a 9-pound, 3-ounce baby boy. This boy was wired differently from the very beginning, and because of that we suspect genetics played a heavy role. That is our autism story, and I’m sticking to it.
But we all have our own stories to tell—our own pathway down the bumpy spectrum road. And each one is authentic and true and raw and sometimes, hilarious. Each one is simultaneously heartbreaking and heartwarming.
So how can science pin down a single cause, when autism hardly has a single story?
Blame.
You know how with a kaleidoscope you can look inside and see a thousand colors and patterns all at once? And then if you turn the dial a little bit, the colors and shapes move, and everything looks completely different?
I think autism is like a kaleidoscope. It is ever-changing and always shifting. It looks different to everyone.
And I think blame is a lot like a kaleidoscope, too. We can consider it from one angle, and feel pain and embarrassment and shame, or we can turn the dial just a smidge and know hope.
Because of his grandmother, Jack eats pears.
Because of his father, he understands prayer.
Because of his teachers, he wears his glasses all day long and only takes them off to sleep at night.
Blame them.
Because of my daughter Rose, Joe and I knew for sure that the sneaky anxiety snake was indeed whispering in his ear once again.
After eating breakfast together one morning, Rose waited until her brother went upstairs for his sneakers before she touched my arm and said softly, “Mom, something isn’t right with Jack.”
It was a few weeks after Easter, and she was still wearing the pink rabbit earrings that the Easter Bunny left in her basket. It was her very first pair of dangly earrings.
How can a 7-year old girl wearing her first pair of dangly earrings so aptly describe her big brother’s anxiety?
“He just isn’t himself.”
Because of 12-year old Joey, Jack runs track on Wednesdays.
See, Jack hates sports. He really hates anything right now that doesn’t have to do with YouTube videos and Oreos and baking cakes. So we signed him up for Special Olympics track team. And he threw the biggest fit you’ve ever seen until Joey agreed to do it with him.
And during the first practice, Joey took off down the track, his neon yellow sneaker flashing. He looked back over his shoulder at his brother, and then slowed just enough for Jack to catch up. Jack jumped on his back, laughing.
If Jack believes he is fast—that he can run like the wind and feel the cool breeze of a New Hampshire spring in his face—well, that’s all Joey’s fault.
Blame him.
Because of Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.
Because of 6-year old Henry, he knows how to shout to be heard.
This weekend we had Jack’s birthday party. The extent to which my son obsessed over this event is difficult to put into words. Over and over and over and over, he wrote out long, messy lists and schedules and recipes and ingredients and more lists, until, frustrated beyond reason, I huddled in my bedroom and hid from him.
Then, about five days before, before he decided he needed to make blue cupcakes. Nothing but blue would do. We searched everywhere—Hannaford’s, Stop & Shop, Target—for blue cake mix. Then we tried Amazon. We found it.
Jack hovered over my shoulder while I sat at my computer and tried to add it to the cart. But it was considered an add-on—an item that’s so small you have to order a bunch of other things in order to buy it.
Jack started to jump and scream. I started to sweat.
Just as Jack and I were both about to lose our minds—albeit for very different reasons—9-year old Charlie walked into the office.
“Wait! Mom, why don’t you check the box that man Duff sent us? Maybe he gave us some blue mix.”
Sure enough, we dug around and found one. I nearly wept in gratitude.
Thank you, Duff Goldman. Thank you, Charlie. I blame both of you for the lumpy blue cupcakes that stained Jack’s teeth when he smiled.
Then there is Cody. Sweet, adorable, green-eyed Cody, the boy in Jack’s class who told another boy to leave Jack alone and stop calling him names.
I blame Cody for being brave and honest and kind. I blame him for being one of Jack’s very first friends.
Then there’s Jack himself; the owner, the landlord, the keeper of the spectrum key. He never asked for this diagnosis. He never asked for a cure or for headlines or blame.
And he is so much more than science.
He is a boy who can’t understand what an add-on means when you shop on Amazon.
He is a fifth-grader who longs to belong.
He is a brother and a son, a track-runner and a blue cupcake-baker.
Like a kaleidoscope, he is colorful and beautiful and perplexing.
Sometimes, he makes my eyes hurt.
Sometimes, he makes my head hurt and other times, my heart.
As the world of science continues to tackle the hard job of figuring out where autism comes from, I’m going to continue turning the kaleidoscope in my hands so I can learn the patterns and colors and mystery right in front of my very eyes.
I’m going to celebrate the people–and puppies–responsible for Jack’s progress, his joy, his confidence and safety.
“Hey. That is my friend. Don’t talk to him that way.”
May 4, 2015 @ 1:12 pm
What an awesome blog post, as always! I struggle with the Blame Game every day – and it is always aimed at myself – by myself. So glad you found some blue cake mix :).
May 4, 2015 @ 1:29 pm
Thank you for writing this. I read this as well when my son was diagnosed and even though in my gut I know my sons autism is genetic, I can’t help but beat myself up for hearing gestational diabetes could be a cause just a little. I feel like I would have liked a heads up from my dr atleast when I was sitting there injecting myself with insulin every day for 4 mos. Not to say that I had a choice, but a heads up would have been nice. Still, like you I wouldn’t take my son any other way. He is the most rewarding and amazing thing I’ve ever done in my life but when your trying to protect your child from everything when you are pregnant then you hear something like this, it’s a hard one to digest just a little. Thank you for always bringing truth to the subject and tears to my eyes.
May 4, 2015 @ 1:58 pm
Carrie, as usual, you hit the nail on the head.
The guilt feeling was there in us for almost 5 years, before we found a doctor who didn’t want to give up either, followed yet another hunch, did the right specific test, and discovered the correct diagnosis for my daughter’s rare condition. Mother had been a heavy smoker, very light drinker before the fact. But worst of all she suffered a severe back injury from a fall just a few weeks after conception, before we knew of the pregnancy, and she took heavy narcotics while hospitalized, and continued the gestation in bed.
There were so many symptoms, we had so many questions and none of the answers fit what we were observing. When we found out is was a faulty egg, a bad chromosome that could not have been predicted, a faulty UBE3A gene, didn’t run in the family, and we didn’t DO anything wrong nor could have prevented or predicted it, we got that GUILT MONKEY off our back.
But she still has Angleman Syndrome, just having turned 30 in March.
Research is on-going into possible prevention or prediction, but that has become secondary to the studies being done to find ways to relieve the mental delays, absence of speech, poor muscle control, seizures and tremors/dystonia.
But like Jack, Heather learns, although in her case very slowly, from those of us who love her as I try ideas taken from some professionals, but mostly peer families.
We in turn, learn unconditional love and trust from her.
What a blessing she has been to me.
May 4, 2015 @ 4:49 pm
Hello Carrie,
I knew early on my son was different too. I know that no matter what any expert tells me, I know my son better than they do. As an infant he was slow in motion but very early in speaking. I talked to him and played with him all day, every day and he responded in so many loving ways but was delayed in fine motor and gross motor skills. I had him take piano and gymnastics for 5 years and it kept him busy. He was always loving and brilliant but physically developmentally delayed. He is so high functioning that his diagnosis was difficult at best and I kept searching for 6-7 years before we finally did get the Aspergers diagnosis. Today he is a high functioning 20 year old going to college 2 hours away.
I love reading about your special son Jack and your family. Our son had many fears and anxieties and it seems to me that with love and guidance somehow they come through the tramau of childhood and all of its’ complexities, that are so difficult to explain to children with autism. My son takes everything so literally but as he is getting older he is able to see some of the gray areas in life. Jack is one lucky young man to have such a big family and such a loving one at that. My son is an only child and I do worry about him, when I am gone. I hope that Jack is blessed with peace and contentment as he grows up. He certainly deserves it.
Thank you for sharing your story in such a beautiful and insightful way. I hope that your writings help educate those that are not as patient and kind, and may all mothers who fit in your shoes be blessed with tolerance, forgiveness and understanding for those that just don’t get it.
Warm regards, Carolyn and family.
May 4, 2015 @ 6:49 pm
Thank you for yet again, helping me to see that there is nothing to blame, and how painful it was to hear friends, good friends, offer up their reasons for my son’s ASD…..ahhhh, as my eyes stung with tears yet again at your posts, my heart grows more strong and able to be even stronger for my son!
Thanks!
May 4, 2015 @ 9:55 pm
I fully support the idea of genetics because of my husbands family. My wonder mother-in-law, a kindred soul, was married twice . She was a “floppy ” baby she says. She had two boys with her first husband, and a girl and boy with her second. The two oldest were raised by their father and she and her husband raised the next two in two very separate parts of Canada.
After 38 yrs the children and mom were all reunited.
Of the 4 siblings, 3 have Autism on various scales of the spectum.
May 4, 2015 @ 10:00 pm
I thought the same thing when I came across that study on facebook. I wrote something to the tune of it’s always something. Another cause for autism. Our blameworthy event was having a third child when others were starting to say something was different about our older two. It’s genetics here, too. Not vaccines or gestational diabetes. Fevers. Antiniotics during pregnancy. Well that tjird child isvgetting ready for grad school this fall.
May 4, 2015 @ 10:03 pm
Thank you for this poignant post. The overarching love and hope you have for your son and your family is familiar to me. It is very, very hard some moments, and the next are simply amazing. Your writing shares a sense of hope and peace that is chosen and fought for, it doesn’t simply appear. Thank you.
May 4, 2015 @ 11:20 pm
Your posts always leave me teary eyed!
May 5, 2015 @ 1:15 am
Your topics are always so timely. Today I was telling a client that sometimes autism is a positive…he looked back at me and said really? yes, really. When we go to the pool to swim…Nash goes about the business of jumping, diving down and doing what he does and I go about my business. But, about midway…I tell him that we have 15 minutes or whatever minutes we need to until its time to go. At that time…we leave. No questions, no whining….Nash gets out of the pool and we go. I have parents come up to or yell across the pool…how do you do that? How can I get my kid out of the pool without a fight or whining? I tell them…its autism 🙂 My kid is obsessed with time, lateness and calendars….and that is because of autism. You gotta use what God gave ya!
May 5, 2015 @ 5:12 am
Reblogged this on oshriradhekrishnabole.
May 5, 2015 @ 8:11 am
We all want a reason something happens. We don’t want to believe that it is random because random can’t be avoided or planned for. After my daughter was diagnosed I spent years trying to figure out what caused her disability until one day I realized it didn’t matter anymore, nothing would change even if I knew the cause. Jack is lucky to have you as his mother
May 5, 2015 @ 8:54 am
Isn’t it interesting that many people have to blame someone for everything? I was at the gas station the other day when the attendant saw my autism bumper stickers and struck up a conversation. He told me that he thought his step-son’s father was to blame for his autism. I quickly explained to him that no one is to blame, this is the way people with autism are born. It is how they are wired. I have had to explain this and many other details of autism over the last 35 years of my son’s life, including why John takes anti-anxiety medicine and sees a therapist. These are things he needs to be able to function in a world that is overwhelming for him. I appreciate your blog entries that help with much-needed education on the many aspects of autism. Thank you for pouring your heart out on a weekly basis in the spirit of autism awareness.
May 5, 2015 @ 10:40 am
Once again, an amazing post!! I believe you and I would be the best of friends if we ever met and I know our Jack’s would too!! Thank you for sharing your heart the way you do. I look forward to your Monday posts SO much!!
May 6, 2015 @ 10:14 pm
ahhh the world needs more people like you, jack, his family, and friends! what a wonderful support system you all have in place. amazing!
May 6, 2015 @ 10:16 pm
Your inspiring me to write a blog
July 23, 2016 @ 9:47 pm
I blame God for my autism.