Autism’s Cocoon Building
“Tell me about his diet. Does he eat a wide range of foods?”
I hold the phone between my ear and my shoulder as I reach for a gallon of milk.
“Oh, yes, he eats almost everything!”
Another intake call. That’s what I find myself on in the middle of the grocery store.
The young woman on the other end is very nice. She sounds young.
As my son Jack finishes up his residential program, I’ve spent the last month researching viable summer options. Options for a 19-year old with autism—a young man not ready for either a full-time job or too much unstructured time—are few and far between, it seems.
What is it like to have the kid who doesn’t fit anywhere?
Let me tell you.
It’s maddening. It’s perplexing. It’s exhausting.
Life skills. These two words are on repeat in my life. Program directors tell me they teach life skills, the days are structured around life skills, students can expect to improve life skills.
Jack, by very definition, already has basic life skills.
Autism’s balance sheet dances across my periphery like so many musical checks and balances. Constantly, I measure his triumphs against his vulnerabilities.
I hate it. But I don’t know how else to be.
He can do his laundry.
He is excellent with hygiene.
He cooks, he cleans up afterwards, he likes to bake and share treats with others.
Yet he is deficient in social skills. Reading the room. Understanding boundaries.
He latches onto topics that are considered taboo—sex, drugs, alcohol.
He lingers on the periphery of conversations long after they stopped including him.
He cuts people off in crosswalks. He forgets to hold doors open. He scripts lines from pop culture.
As he gets older, this is becoming more and more of a problem. Autism isn’t cute any longer. At 6’5”, social gaffes take on a whole new meaning. The risks are much bigger.
It’s easy to assume that, since living away at a supported program for a year, Jack’s autism has diminished. His anxiety is not as fierce. His obsessive-compulsive disorder is under control.
Sadly, that is not the case. He just packed it all up and moved it with him. And next week, he will pack it all up again and move it back, right along with his t-shirts and laundry detergent. Autism changes address as easily as the boy himself.
Will it always be this way? This reduction of boy to paper—heartbeats into facts?
For nineteen years, I have raced from place to place, creating mini cocoons.
Preschool.
Kindergarten.
Summer camp.
Karate class.
I call ahead of time. I fill out the endless paperwork. Via the phone and email messages, I explain his triggers, his behaviors, his quirks, his appetite.
“Can he manage his own medication?” she asks. I turn into the cookie aisle. I choose Chips Ahoy. I consider the Oreos.
Our conversation continues through the frozen food section. I put waffles in the cart.
I explain all that I have explained before, that yes, he handles his refills. Yes, he administers the pills himself. Yes, he is what they call medication compliant.
His autism isn’t going anywhere. There is no cure. Anxiety will be a lifelong battle, as will his OCD.
Still, on the cusp of every new program, I can’t help but hope a wild hope.
Maybe this will be the one.
This will be the one that helps him overcome all he continues to face.
This will be the one that removes the perpetual barrier between he and I. At long last, we will talk. We won’t exchange information about the weather and celebrities like two court reporters.
I want to talk to my son.
What is it like to have the kid who doesn’t fit anywhere?
Let me tell you.
It will break your heart into a million pieces every single day.
As I load the bags in the car, I say what I always say.
“Let me tell you a little more about my son.”
Cocoon-building. This is what I do. So one day he may blossom with color and light.
I just want someone to believe in him.
Please, believe in him.
I bought the mint Oreos. He loves them.
June 26, 2023 @ 11:07 am
Hello Carrie.
I have read your blog for years now. I love your words; they so often reflect my thoughts. Your words explain my feelings. You write the things I want to tell the world; but I do not have the gift of writing that you have. Every time I read one of your stories or your letters to Jack, I can hear my own voice saying the same things. Not always the entire story connects for me, but ALWAYS some piece of it resonates inside me and brings me to tears. Sometimes the tears are joyful and come with laughter and sometimes they are from a intensely sorrowful place. Sometimes they are for you or Jack and sometimes they are for me or my son.
My son is 20, his name is Jakob and he has Autism. He and Jack seem to be very different and very much the same. They both have amazing abilities and yet they do not fit anywhere. Jakob is the kindest soul I have ever met. I seriously do not recall a time he was every mean to anyone and yet he has no place in our society and it breaks my heart every single day.
I have started to write you a hundred times, but have never completed a response.
Today your description of cocoon building was an explosion of awareness! I have been doing this all of Jakob’s life and could never quite explain it, even to myself. Thank you for this common, yet so deeply complex word. It is perfect! 🙂 All the while I was explaining and front loading and emailing and filling out those damn forms, I was BUILDING COCOONS! 🙂
Anyway, mostly I wanted to say THANK YOU for your words. You always make me feel better.
Kris from Indiana 🙂
July 17, 2023 @ 7:45 pm
I too understand Jack and Jakob very well, your words Carrie and Kris could have as easily been written by me about my son. Aidan is now 20, 6’3″, and I too have been cocooning well before his official diagnosis at 8. My boy is filled with anxiety and quirks, social ques are lost to him and his online life worries me, but somehow we continue to muddle through. The pangs of worry I once felt for the lost life I hoped he would have now fill me with worry for his future when I am gone. Mom and Dad won’t always be here and the unknown terrifies me.
June 27, 2023 @ 12:51 am
To anyone on the outside who does not have a child afflicted with a mental abnormality of any type, it is impossible for them to understand the world we live in.
June 27, 2023 @ 1:50 pm
Believe me, I Believe in Jack.
July 19, 2023 @ 1:17 pm
Wow. I was diagnosed with Aspergers many years ago. It was on the autism spectrum back then, now, I am not sure. However, the issues you describe regarding your son are similar to me.
Interestingly, anxiety rules my world. However, I only like about 5 foods. I think I lived on graham crackers for 20 years before switching to Lornadoons. I know I am different than anyone else around me. I have had a few friends in life, but they all turned out to be around me for alternate reasons.
For me, now in my 60’s it is a way of life. Their is no known cure. I sure hope they never find one. I wouldn’t want to be any other way.
I was miserable for most of my life. One day it all changed. No, I will never get anyone’s body language or unspoken innuendo’s. I had married the perfect person for me. She never tried to change me. She let me be me. She was often confused by my terrible social skills, and blurting out the wrong thing at the worst time. The worst is when I miss a cue to hug or console my wife. Once I was diagnosed, she read everything she could find. She finally understood me. It has never been easy during our 40 plus years of marriage. But that is not what changed my misery.
I remember once thinking, I just need to memorize all of the body language and then I will know what someone is trying to tell me. Once I did the research, I learned their are millions of them. HUH?
I have struggled so much with “normal peoples” honesty. Actually dishonesty. “Normal people” have many levels of dishonesty. I think of it similar to throwing a rock into the water, and all the rings outward. I only understand the center ring, while everyone else knows to “sugarcoat” the truth and probably choose the 4th or 5th ring out of honesty. Most of us, are this way.
Strengths: We can learn a subject to the final degree. For example: I know of 186 plane crashes and what caused them. I usually know a rough number of deaths. I have no connection to airplanes, know no pilots, and have no family members in aviation. Still, I am obsessed with the topic. I have many similar interests.
I found a job that became perfect for me. It takes great concentration with very little social and coworker interaction. Any group involvement I am allowed to skip, because I have worked here forever. Otherwise, I would fail. It took a very understanding owner to allow me to be me, and not someone he programmed.
Weaknesses. Anything to do with other people in any setting. My number is 4. This means a room with more than 4 people, means I will fail to probably speak at all. Even when asked. Its not that I do not understand the topic or have viable input. It is because if I start talking about something, I may never stop. I am also told the monotone drives some crazy.
What changed my misery. It was so simple I can’t believe it never dawned on me prior to that day. The understanding that nobody can make me mad. I was the only person that could make me mad, destroy my day, take my confidence, and belittle my thoughts. I have been happy every day since.
Don’t ever expect us to get “it”. We never will. We have our own gifts to offer. They are just different than others. We are usually the nicest people you will ever meet. But we come across often as bitter and cold. Trying to make or hope we become “normal” comes across to us as we are a disappointment. We also suffer from WAY to much empathy, something many believe we have none.
September 6, 2023 @ 9:02 am
Thank you everyone for this post and comments. This so perfectly touches on many aspects of my son (age 15, just entering high school). Mike B – I really appreciated reading your comments and commend your bravery for sharing your personal experiences here. I can’t tell you how helpful it can be as a parent to read it. I hope someday my son will be able to share his own story and attain the same level of self-awareness that you have. But mostly I want to know that, like you, he is truly happy.