How Autism Affects a Marriage
I’m good, thank you for asking.
I guess I’m okay.
It’s been a rough couple of days, to be honest.
Yesterday I had a Zoom meeting with my son Jack’s team. Things aren’t going well at his college program. Everyone is worried.
He is having intrusive thoughts. He is talking to himself and engaging in impulsive behavior. He is making other students uncomfortable.
See, Jack is diagnosed with autism. He also has severe anxiety and obsessive compulsive disorder.
He is eighteen, but his heart and his spirit are much younger.
There is a cost when the brain races to catch up to the body. For Jack, it seems to manifests in a hyper fixation on what others consider taboo: sexuality, substance abuse, death.
These are the topics he verbally processes. He thinks he’s talking to himself, when in fact anyone in earshot can hear.
I spent the rest of the afternoon on the phone, managing this new problem. The pediatrician, a parent coach, an educational consultant.
I talked about medication, therapeutic strategies, other options for placement.
By the time my husband Joe walked in the door, I had descended into a state of despair.
Joe is a Forever Father. He wants to solve. He yearns to find the lesson within the diagnosis. He is afraid to hope too much.
I long to discover a wholeness to my son. I want to move past autism management and into discovery. I want this boy of mine to experience an ease that has been out of his grasp his whole life.
Round and round we went, debating whether we made the right choice with this program—debating if there is a place for him at all.
We accused. We pointed our fingers. We each made our own case for righteousness.
Without Jack’s ever-escalating nervous system to keep us in check, there was a jaggedness to our voices.
We hurt. Privately, separately, we hurt.
Today, I am tired. I am tired of it all.
It is difficult for me to capture the work that is life with a diagnosed child.
There is the work of teaching him how to say please and eat with a fork and cross the street safely.
Then there are meetings, the phone calls, the forms.
Then there is the work to keep the fabric of your family and your marriage intact.
Then here we stand, in the grocery store. Making small talk by the dairy section.
I’ve looked at autism from every angle I could think of to look.
I’ve looked at marriage from every angle I could think of to look.
Both confuse and delight me.
Autism. Severe anxiety. Obsessive compulsive disorder. This trifecta defines my son’s life.
We thought we’d get through puberty, and we would be done.
We thought he’d graduate from high school, and we would be done.
We’d find the right college program, and we would be done.
Autism is never done.
Like a wave crashing over the sand, this realization hits me again and again.
Sure, like a rollercoaster ride, there are peaks and valleys. There are small triumphs which light up the rocky path. Yet at times like this, I struggle to remember their glow.
What will become of this boy of mine? Where does he belong?
Who will he be at fifty? Seventy? Life beyond?
Who will make the calls, adjust the medication, connect the doctors, assemble the teams?
Who will fight for him?
There are moments when I feel very alone in all of this—isolated inside autism’s bubble.
I am lost.
Eighteen years into this journey, and I am lost.
The water is rising.
I can’t see the end.
Building a family is messy business.
I miss my husband today.
I heard his favorite song on the radio.
The dog made the silliest face.
The news said it might snow tomorrow.
I couldn’t tell him any of it, because we are in an autism standoff.
Nothing is real until I tell it to Joe.
Tonight, we’ll do what we always do.
We’ll exchange a small smile over dinner. Maybe he’ll reach for my hand or brush his foot against mine beneath the table. Our resolve will soften.
We’ll come back to one another.
After all, a wave returns to kiss the shore, matter how many times it is turned away.
Right now, it’s all I have left to believe.
Thank you for asking.
Thank you for listening.
January 23, 2023 @ 9:18 am
Thank you for sharing. You are not alone! Autism is hard!❤️
January 23, 2023 @ 10:21 am
Sorry to hear things have been rough. I understand. Hang in there. I believe your son will find his place, just as i believe mine will someday.
January 23, 2023 @ 10:56 am
Today’s blog, like so many, hits very close to home. There is no finish line. Forever parents. Thank you for your courage to always share hard truths and feelings. You are not alone. What you share lets us know we are not alone either. Thank you.
January 23, 2023 @ 11:46 am
I found you when I started working with a young boy with the diagnosis. I went back and read every one of your posts. I can feel the rawness in your words. Good luck to your beautiful family.
January 23, 2023 @ 2:55 pm
hugs to you.
Thank you for sharing. I understand.
January 23, 2023 @ 4:50 pm
This brought tears to my eyes. Our daughter is 28 on the outside and between 5 & 10 on the inside. You are not walking the path alone. Between juggling the present and trying to plan for the unknown, it seems like there’s not a break. But you can do this. You both can. You all can. You will be in my prayers for strength and wisdom.
January 23, 2023 @ 8:50 pm
I’m sorry to read this as I always say to my husband autism is one step forward two steps back. Sending my best for the outcome you all want and need.
January 23, 2023 @ 10:46 pm
So much of what you wrote made me cry. Only God has the answers to WHY and someday we will to. Hope is the word I hang on to.I pray u can too. My thoughts and prayers go out to u all.
January 24, 2023 @ 2:35 am
It never quits. I’ve been doing it alone since my girl was 7, will be 38 in March. Just when it seems all is well, something changes. That hurdle is defeated after sometimes several months of battles, and it gets smooth……..for maybe a week. Now my state is forcing me to drop some of her private insurance coverage and insist her specialist doctors fill out exhaustive waiver requests so we can keep their specialized services. The docs refuse to do anymore because they take so much time and effort to complete, and every one they have submitted have been denied anyway. Also, I thought I had found a really good group home for her as she’s been there 3 years, with an excellent advocate in the home manager. But last week when I suggested that she wouldn’t be able to scratch the caregivers if they cut her fingernails, he said he “didn’t give a damn what I think.” It just never stops……………………….Hang in there parents, and pray alot!
January 24, 2023 @ 10:07 am
Thank you, Carrie, for having the courage to share honestly, as always. Your words express thoughts both raw and beautiful. Hoping that you find the answers and peace for yourself, husband and Jack.
January 24, 2023 @ 6:04 pm
Oh I hear you…. One step at a time xx
January 24, 2023 @ 10:04 pm
You are not alone and your willingness to share your journey with Jack reminds all your readers that we are not alone in this. Thank you for sharing Jack’s progress to give us all hope through all of his accomplishments but also the reality of the fight to support him through his struggles. This autism journey is a challenge but also brings some pretty awesome people into our lives: you & your beautiful words, their therapists & teachers, other autism parents, Coach Shannon, etc. I hope Jack’s team finds a good plan to get him through this challenging time & to bring you some relief from your constant worries soon❤️
February 3, 2023 @ 5:36 am
Please forgive the suggestion if it is not for you, or is not accessible where you are. Have you tried CBD oil? Our autistic daughter has had great success with it for her anxiety. I know there are pro’s and con’s to such an approach, to medicate, but if it is accessible where you are, there are limited downsides to trying it for maybe 1 month, to see if it helps. The company we used is CBD Legends because it is high-grade quality stuff but there are others I’m sure.
When the anxiety was reduced, her other struggles were lessened, such as less conflict at home; she was then better able to focus on other things.
I hope this works for you.
Also, please take solace from the fact that many marriages, that are without autistic or special need kids, have similar trials and pressures. Unfortunately and ridiculously, how to work at a successful marriage is not taught at school, so we all have to figure it out as we go, and fall back on our role models from our own upbringing.