Autism Doesn’t End After High School
When our son Jack was diagnosed with autism, my husband Joe and I thought it would—in our own words—blow over at some point.
He was a toddler. He had light brown hair and a grin full of mischief.
He ran from me every chance he got—through grocery stores and malls and parking lots and the library in the center of town.
Jack is seventeen now.
His hair has darkened over time, and he likes it very short.
He wears glasses. He rubs his hands together like he’s at a campfire.
He loves cheese enchiladas and burgers with no pickle.
He doesn’t grin like he once did.
In the space between toddler and adolescence, his smile disappeared altogether. I don’t know exactly when this happened. I guess slowly eroded.
You might say autism hasn’t blown over yet.
And now I know. It never will.
Autism doesn’t end after lots of speech therapy, or long evenings at the dinner table, or many sleepless nights.
It won’t end after high school.
It won’t end when it’s time to find a job, or a place to live, or figure out healthcare.
It is a game of push-pull, progress versus joy, boy versus diagnosis, hope in the darkness, cheese enchiladas, part wild-child, part lonely chase.
At the same time, it isn’t a game at all.
I wasn’t prepared for this.
I’m not cut out for it.
I don’t have what it takes.
Please, don’t reassure me. Just let me make my confession. Let me say the words.
My son Jack begins every day asking about the basics.
What will we do?
Where will we go?
When will we eat?
In my lowest, saddest, shameful moments I want to snap at him and demand to know when, when, haven’t I met his needs?
Then I remember.
He has needs I can’t begin to understand.
Some days, I feel like I am holding his future in the palm of my hands.
And one wrong move—if I forget to remind him to say please when he orders his chicken tenders or tell him again to look both ways before crossing the street—it will all fall apart.
It would be easy to let it all go.
It would be easy to write him off in the name of a diagnosis, to change my mind when things get hard or his anxiety kicks up or he doesn’t want to go to his summer program.
I could shrug and say, well, he has autism, what can you do? Maybe next year.
But I can’t.
I can’t give in or change my mind or stop pushing him when it becomes uncomfortable.
I can’t because since he was a brown-haired toddler he’s had this spark. It is a flicker of determination I can’t quite describe. But it’s always been there.
At some point, I made an unconscious decision to protect this small flame—to shield it from the wind and the judgement, and give it light and air.
This means I can’t change my mind.
I can’t do what’s easy.
There is no next year. There is only now.
It doesn’t end. Autism doesn’t end when senior year is over, or the hormones of puberty finally settle down, or manhood begins.
In less than a year, we will stand before a judge.
We will stand in court and ask this boy named Jack to relinquish everything he longs for—independence and freedom and choices and sovereignty.
I don’t know what I pictured, but I can tell you I never pictured this.
Could you do it?
I want to know.
I want to know because I have to do it, but I don’t know how.
Tell me how.
My son Jack is good and right and whole.
He is not broken.
I will never change my mind about him.
I can’t quite see the end.
Maybe there is no end.
Maybe there is a beginning and somewhat of a middle and mostly a sparkling magic slippery riddle in the shape of a boy.
I chase his smile the way the sun chases the moon at dawn.
I can’t help but think that maybe, just maybe, with enough light and breath and air, his flame could become fire.
And he’ll set the world alight.
July 12, 2021 @ 9:12 am
Carrie – I so enjoy your posts each week. I, too, am an autism mom. My son is 21. Saying the teen years were hard is an understatement – puberty was not nice to my son. My son regressed, became non-verbal, incontentent, and destructive. He was diagnosed with catatonia and hospitalized when he stopped eating and drinking. The doctors weren’t sure he would ever “come back.” But, he did. We made the very difficult decision for him to have ECT treatments (the gold standard for catatonia) after high doses of ativan did not work. Slowly, he came back. He “relearned” what he lost. He is now headed to college to attend through a special program. He will live on campus (2 1/2 hours away). I am beyond thrilled for him.
Hang in there. We can do it. Cyndy
July 12, 2021 @ 9:31 am
Thank you for sharing your story, what an inspiration you and your son are.
July 12, 2021 @ 11:08 am
Cyndy, I, too, am an autism mom of a 12 y.o. Not sure I should type this ‘out loud’, but she’s not been too difficult. Not sure whether she’ll ever be independent, but I work at a university that provides a very generous tuition benefit for dependents. Do I think she’ll use it? Not sure. But dang it, I’m going to stay and be sure the benefit can be used, because we don’t know what the future holds. Heck, I don’t know if we’ll be here tomorrow. So I hope for the best.
Carrie, Most days, to be honest, I’m just crossing my fingers and holding my breath.
July 12, 2021 @ 9:17 am
My hope & prayer is that Jack has a good experience this summer. I think he will. ♥️
July 12, 2021 @ 1:10 pm
All the tears for you this morning Carrie…tears because as autism moms we know how scary it is to have our boys out of our sight, praying that they will stay safe and feel more joy and less worry. And tears of hope and love that your family was so strong that you made this possible for Jack. It can be so intimidating but we can do it. We have to do it. As you said so well, there is only one chance to raise our boys…deep breaths today. I can’t wait to hear about Jack’s adventure!
July 12, 2021 @ 1:47 pm
I was just talking about something similar this morning with my husband. It doesn’t end, it evolves. My circular feelings…I know I should be glad my kid wants to ‘do things’ (huge deal for him to leave the house) but sometimes I am just so tired of everything being a damn social story that I need to be involved in. He wants me to do the commuter rail and subway transfer to go into city with him in case he ever needs to do that. I know that sounds like ‘well that could be fun’, out and about. I feel guilty because I know I should be thrilled he wants to do this and with me (typically I am his biggest annoyance…things like how I chew, breathe, etc), but I know it will be so stressful. Then I feel badly that I feel that way.
Like you said, Carrie, “He has needs I can’t begin to understand.
Some days, I feel like I am holding his future in the palm of my hands.”
But sometimes I just wish it were different & I know feeling that way is not good for anyone.
I live a mix of feeling an abundance of gratefulness for all that he/we have accomplished in this sometimes surreal life and also a little depressed & tired that nothing’s easy & trying to also meet the needs of an older kid (with his own challenges) who couldn’t wait to go far away for college because of all the chaos & meltdowns (not so much now) of his brother.
Yup, autism doesn’t end after high school.
And yes, I know I need a therapist. That’ll have to wait until Fall when more therapist have in-person sessions. I certainly can’t do tele-therapy with husband working from home & kids around. So thank you all for letting me get this stuff out:-).
July 12, 2021 @ 4:25 pm
Hi, Carrie. You’ve been speaking to my heart since I found your blog. You put words to thoughts I have had for years. My young men are 29, 25, and 21. Our oldest and youngest are on the spectrum. Even though we have been on the same journey for 21 years, the path has been so different for each of them. I’m still not sure I am doing anything right on any given day, but like you, I get up every day and try again.
When our oldest son was almost 23, he was involved in a car accident. He walked away with a concussion and a dislocated shoulder and made a complete recovery, but the experience set off a chain of events that ended with my husband and I in front of a judge assuming guardianship. While I have since learned things about guardianship that concern me, at the time, it was the best option. While on paper we restricted his rights, we have always had open conversations with him about the things he wants to do. We have allowed him as much choice and autonomy as possible within the context of the guardianship. Wherever possible he has been an active participant in making decisions for his life. However, in situations where service providers or other people might not have his best interest at heart, we have the final authority to make decisions and protect him. For our youngest son, we do not have guardianship. TX now offers something called Supported Decision Making. I’m not sure yet how I feel about it, but it is the available option at the moment.
I hope this helps to encourage you regarding guardianship. It feels so final, but it doesn’t have to mean he never has a voice. It just affords you the ability to be the official authority on what is best for Jack. ❤️
July 26, 2021 @ 12:09 pm
If Jack doesn’t set the world aflame, you will. I love reading about Jack. My Carson is almost 20 and I see so many of the same things. And so many of the differences. But they both have one thing in common. A momma who will move heaven and earth to make things better for their boys. Thank you for hope.