Does "Autism Mom Guilt" Ever Go Away?

Asking for a friend

I love a good plot twist.

At an age when others are slowing down their work commitments, I have embarked on a whole new adventure. Without going into details, it’s amazing. I’m thrilled to be building something new and working in an office with a great team.

This job did require some adjustments from my former work-from-home life. Just a few months ago, I was always available for home repair appointments. Laundry was thrown into the machine in between phone calls. I scheduled time to run or go to the gym whenever I felt like it. Now, chores happen on Saturdays, and exercise isn’t happening frequently.

I also have less time for Ian.

Ian, my 23-year-old son with autism, attends a special college up in Vermont. Similar to other colleges, he’s home for a four-month summer break, which means that he is isolated in our home for four months. It’s a two-mile walk to town. There’s no access to public transportation. It’s suburban boredom here.

Since 2000, when COVID shut down the schools, Steve and I became Ian’s main social outlet. We take him on day trips over the weekend. He comes with us to family functions. He’s our “plus one” at many events. We shlep him on trips to the supermarket and the mall.

School and college also provide him with human contact. For a few years, he had a transition program during the day that kept him occupied. Now that Ian is at college, he has a roommate, classes, a dining hall, dorm activities, and optional organized activities.

Between our efforts and his programs, Ian has an unusual amount of social opportunities for a kid with autism. Without this help, Ian would retreat into his brain and the computer, and we would lose him. He can’t organize activities with friends. He doesn’t even have friends. He needs help.

Steve was away this weekend, so I was Ian’s only social outlet. At 9 am, we drove to a local deli where he got himself an egg sandwich. We drove to the park, where he ate his breakfast on a picnic bench, and we both went for a long walk. After a shower at home, we went to church and the farmer’s market. Afterwards, he went back to his computer for the rest of the day, but would periodically come down to the kitchen to check on dinner progress. When Steve came home, the three of us ate dinner together.

Now, that’s all great, but that wasn’t what I wanted to do with my day. I wanted to sit in front of my computer and spend the whole day working on my book. I don’t want to worry that he’s lonely and bored. Since he’s by himself during the week, I have additional guilt for doing things with him on weekends.

Last week, a housing group emailed me saying that it was Ian’s lucky day and that he had finally gotten through the multi-year waiting list. I need to fill out a twenty-page application for a new complex of 18 apartments that are only for high-functioning, independent people.

I have mixed feelings. Yes, it’s a great opportunity for a subsidized apartment about 20 minutes from us. However, I’m not crazy about the idea of shoving him away in a box and forgetting about him. As much as I would love to be an empty nester like my friends, I can’t just send him away without a worry.

When Ian’s at college, I never feel guilty. He might decide that he would rather be glued to a computer all day and skip out on the clubs and trips. I don’t feel guilty, because that’s his choice. Also, I can’t see him zombied out in front of the computer, so that’s always a good thing.

My autism guilt has been with me since the beginning. It started as soon as we got the diagnosis. Of course, I blamed myself for that. Then I didn’t immediately get him the right kind of therapy. Guilt. I blamed myself for not being tough enough with his school district. My transgressions are many.

Other than a lack of a social life and my persistent guilt, Ian is having a great summer. He has a part-time internship, where he beta tests software and writes code for an AI company in London. It’s not a paid job, but that’s okay. It keeps him busy for 20 hours a week. They had him suddenly sign an Intellectual Property contract, so he must be doing a good job. By all measures, Ian is doing great, but I’m still saddled with autism mom guilt.

“Autism mom guilt” is a pernicious demon that plagues all of us. At some point, I hope to let it go.

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LINKS

I’ve been learning how to charge SSI for rent for Ian’s room and how to apply for SNAP benefits for him. More on that soon.

In a huge win for the disability community, the Supreme Court ruled that parents can sue school districts for damages if they can show that the school system had acted with “deliberate indifference” to the student’s educational needs.

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