Our Autism Story
“If this doesn’t work out, you’ll just find another program!”
“Actually,” I said, “There really aren’t any other programs for him.”
“Of course there are!”
“No,” I told her, “There aren’t.”
“Well, I’m sure you’ll find something.”
Standing next to this lovely woman with a small plate in my hand, I felt something wash over me I could not name.
Anger?
Despair?
Loneliness?
Moments before, we’d been exchanging college stories.
Her daughter was Ivy League bound. I congratulated her.
Tentatively, I told her about my son Jack. I mentioned his autism. I explained the residential facility with the full-time staff and the scaffolding and the teams.
Where do you begin, in a conversation like this?
At the very start of it all, in a small exam room, with a soft-spoken doctor and a whirling toddler and the three words that changed everything?
Autism Spectrum Disorder.
Or maybe you jump right to the middle, when puberty and adolescence wreaked havoc on his 12-year old spirit.
Standing there, plate in hand, maybe you talk about the fear of self-harm, the way you hid the knives at night, the changes in medication.
Maybe you say that you swore you’d never turn to medication, that you once thought medication was weak and a cop-out and an easy fix.
And then you watched your son descend into anxiety in a way you never witnessed before in your life.
You watched him lose his smile, his sleep, his potty training, his joy.
You watched your husband’s eyes widen in fear and his voice crack with worry.
How do you tell someone you admire their nonchalance, their casualness, their breeziness? How deeply you wish you could stand in a crowded room and suggest there are more programs, more chances, more opportunities?
When it comes to my son and his autism, I can’t remember the last time I felt breezy.
How do you explain the process that is obtaining guardianship?
How the state assigned your son his own attorney and you had to hire yours and you sat at separate tables and watched your 18-year old’s face twist and contort while the lawyers listed all of his vulnerabilities out loud?
Requires supervision while cooking.
Reveals too much personal information.
Doesn’t understand the concept of money.
How you watched your tall son walk out of the courtroom and reach for his father, and on a rain-soaked morning in early May, you worried you dismantled all you built?
Maybe I should have told her how there are no other programs for kids like my son Jack.
If this doesn’t work, he will come home.
He will come home to the tune of $80,000 no-financial-aid-no-student loans because when it comes to autism, there is no merit money. There are no scholarships.
He will come home. And for the rest of our lives, my husband and I will try to fill his days with purpose and meaning. And this is what keeps me awake at night.
It’s easy to assume this is a story of an autism diagnosis, softly uttered words that belied the lifelong impact.
It is the story of a family arranging and rearranging and arranging once more.
It is the story of the foreverness that is an autism diagnosis.
It is the story our radical grace, our reckless mercy, our tender, tender resilience.
How to explain all of that, standing in a room full of people and balancing a small plate in my hand?
Sometimes you just can’t. Sometimes you just hope you planted a tiny seed in someone’s preconceived notion of your narrative and one day, they will look up and see color amidst the black and white.
You hope that one day, she remembers your face and your hope and your child.
Maybe she sees a tall boy and his father walk out of court, and she thinks back to this crowded room and the white plates and the word autism hanging in the air.
And she will realize. Things are not always as they seem.
For Mom. I am very good. At cooking.
July 4, 2022 @ 10:22 am
This was so heartfelt. I dread those moments in a crowded room too, though for now I’ve been spared. But as my autism son grows older, and me right along with him, I too am well aware I shall face similar awkward conversation moments. What will I say? Or can I run away? I guess I’ll just have to cross that bridge when I come to it. Meantime, I hope to always return to this post. To remember that I’m not alone. Thanks Carrie!
July 4, 2022 @ 2:47 pm
Thank you for this post that helps me be more understanding of a person and his family who live autism. Hopefully, it will help me and others to realize how good intentioned words can invalidate another’s pain. It would be much better to listen and say something that shows compassion. I admire Jack’s courage and though I don’t know him or you personally, you have helped me to see him, you and your family with deep admiration and loving compassion.
July 4, 2022 @ 4:14 pm
Thank you! You shared my story, only my hero is my daughter, 31 years old. No matter how often I have been crushed by similar conversations, no matter how many smart words I prepared to speak “next time”… I’m always left empty, the elephant in the room.
July 5, 2022 @ 5:13 pm
So much is not as it seems. This journey definitely teaches you that what is good sometimes has to be fought for, hard. It is demanding. I am wrung out today and feeling kind of like I’m circling the drain, thank you for your wise words. The love is what drive the hope in spite of the fear and it will help Jack beyond measure.
July 5, 2022 @ 6:12 pm
“It is the story our radical grace, our reckless mercy, our tender, tender resilience.”
Beautiful.
July 8, 2022 @ 7:49 am
Dear Carrie,
I’ve been following you and your family’s story for many years, and I’ve always been impressed with how loving, caring, and patient you are. Your endless devotion to your family, and especially your neurodiverse child, should be commended.
It took a lot of courage for me to reach out and comment on your well-written family chronicle for the first time. I am a neurodiverse, hypersensitive, intellectually limited, and socially dysfunctional individual in his early forties. I live in a major American city with my elderly, retired parents and work part-time as an office assistant (from home since the pandemic began).
My relationship with the rest of my family is strained, but stable, because of all my differences and the ways I’ve fallen short of their standards throughout my life. I wasn’t diagnosed with a neurological disability/disorder/condition/whatever-you-want-to-call-it until I was in my mid-twenties, long after such an important piece of knowledge would have helped me survive in school. At least my diagnosis helped my family realize that my difficulties growing up were legitimate, and not just misbehavior or deliberate underachievement. Better late than never, I suppose.
I notice you’ve mentioned occasionally that your son Jack has a strong interest in music and dreams of becoming a record producer someday. I’m curious about his favorite artists, genres, and influences, since I’m a lifelong amateur musician myself. How much does Jack know about mashups? These are songs which combine elements of two or more pre-recorded songs. There are countless examples of mashups on the Internet.
Jack seems quite knowledgeable about music, so he could probably create some memorable mashups with enough practice and build his self-esteem in the process. There are some audio editing programs and websites which would be perfect for mashup production, and are free and (fairly) easy to use. Best of all, you don’t need to be a music theory expert! If you’d like, I could tell you (and Jack) more about this subject at a later date.
It’s been a pleasure reading your posts through the years. Best wishes to you and your family.