The Autism Family

I knew the autism family would be complicated; I just didn’t realize the stakes would be so high.

The other day I was driving Sawyer home from hockey practice, and I told him how I was writing a chapter in my book, Autism Out Loud, about our autism family. I explained a bit about the context of the chapter and then I asked him how he thinks autism affects our family.

I didn’t know what he would say, and I thought possibly nothing. Sawyer is knocking on the door of teenagerhood and isn’t sharing as much with me as he did when he was younger. But I can say with certainty that I didn’t realize that Sawyer would carry so much, that he would worry so much about his brother.

I am learning that this next season of my life will entail seeing autism through my other children’s eyes and walking alongside them on their own journeys as siblings. At times, I feel prepared, anticipating and knowing what they are feeling. Other times, I feel completely lost, not knowing if I am saying and doing the right things.

I have worked so hard to acknowledge the complicated feelings that come with special-needs parenting. And also, to not let them harden me. I truly believed that once I did that my work would be done. What I didn’t know is that each of my other three children would go on their own grief journey in their own space and time. The pressure I feel walking alongside them is immense at times.

“You always leave mom. Remember last Halloween when we had that party at the neighbor’s house? And we all went? But then you had to leave after just a few minutes.”

I was a bit stunned, and I felt an initial feeling of defensiveness because I remembered it differently than that.

“Yes buddy, I did leave. But you got to stay. Remember, you played pool in their basement and had a dance party. Mom and Cooper left but you stayed with Daddy, Harbor, and Wynnie.”

We had made our way as a family of six to the Halloween party, and Cooper lasted 15 minutes. Which in my book, was a success. I thought I did the right thing by taking Cooper to the comfort of our home and leaving the rest of my family to enjoy the party.

This is the balance I always talk about. I often say as a mom I’m straddling two very different worlds. Autism and neurotypical. Arms outstretched with a foot in each. Trying to bridge the gap between the two.

It’s taken us a lot of years for us to figure out what works for our family. Almost like a complicated algorithm. One stays home. One goes. We switch off. We have help from grandparents and personal care attendants when we can. We make plans knowing we may have to cancel. We host when we can. We educate about autism and the path less traveled.

I think the point is, we can’t force our Cooper to enjoy the ‘norms’ of the world and we can’t make our other children miss out, but what we figure out is a balance. And know that it will look a whole lot different than every other family.

It’s no secret that my biggest guilt moments in this life surround Sawyer. I worry constantly that I have failed him. That I’ve overcompensated. That I’ve spoiled. That I haven’t done enough. I thought I had been sacrificing my needs to accommodate my family and Cooper but what I was sacrificing a lot more than just my needs.

“I guess mom. Yeah, it was fun to stay. You just leave a lot.”

I let the shot he fired hit me squarely in the chest and let myself absorb his words. Because it was the truth. He wasn’t wrong. His feelings are never wrong. He looked little sitting next to me. Much younger than 11-years-old. I forget sometimes that he is younger than Cooper and I’ll find myself expecting more from him. Or for him to act older than he is because is the younger ‘older’ brother.

Resentment. It bubbled up right there on our drive home, just the two of us. Not resentment towards Cooper. Resentment at this hand we’ve been dealt. Resentment that it’s not easier. Resentment that it’s unfair sometimes. Resentment that we must make impossible choices.

I thought about the high price of having to make these impossible choices. Will Cooper be able to go to his sibling’s graduations? Will he be able to stand up as a best man? We are doing everything we can to prepare Cooper for those big moments in hopes that he can be there. We practice sitting and waiting and walking and being present. And he is making amazing progress, and we are so proud of him. But we are still a family divided most of the time.

I knew the autism family would be complicated; I just didn’t realize the stakes would be so high. But we do our best. We keep living. And we keep trying to merge these two worlds.

This is an excerpt from a chapter in my new book. It’s called Autism Out Loud and it will be released April 1, 2025.

Thank you all for being here with me in my little corner of the internet. I have quite a few zooms scheduled with my paid subscribers. I’d love to have you join us. They truly fill my cup!

Kate

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