The Secret I’m Ashamed of as an Autism Mom

As an autism mom, I probably have a ton of secrets I don’t even know about. I don’t realize they’re secrets. But one stands out, and I’m not proud of it. I desperately want to be perfect, superhuman and without emotion. I want to be unabashedly proud 100 percent of the time. I want to stand up, stand firm and stand strong always. The truth is that’s not possible. I’m not perfect or superhuman. And I definitely have emotions. This secret shames me, even though it shouldn’t.

I’m sometimes embarrassed by my son’s behavior because of his autism, and I’m mortified by my embarrassment. That is the cold, hard truth as they say.  Whoever “they” are. I’m not, by any means, embarrassed by his autism. I need to make that clear. It’s not all of the time or even most of the time. It’s probably 1 to 2 percent of the time realistically.

And it’s the negative behavior that’s embarrassing, not his autism. It’s the screaming in the middle of the store. It’s when he throws himself across the floor at school, because I didn’t try to prevent the meltdown — I fought it. It’s him turning 8 and having behaviors that aren’t typical of an 8-year-old. At 5, a meltdown isn’t as obvious. At 8, it is.

And I hate it. I hate myself and that emotion. I hate that I let other people’s opinions or glances get to me. I can feel it coming, and I work hard to extinguish it as quickly as possible. Because it doesn’t help anyone, especially my son.

But I would be lying if I said it didn’t exist. I would be lying if I said it never crept in and engulfed me every once in a while. Usually I don’t notice or care if others are watching. I almost like it because maybe they’ll learn something from staring. Maybe they’ll see a mother love her son who has a disability. Maybe they’ll learn to be more tolerant. Maybe. I just don’t care. Most of the time. But, sometimes, I do. I confess.

I think many moms with kids with disabilities like myself might judge ourselves by a higher standard. A “typical” mom would probably be embarrassed if her child threw himself across the floor at school. But a special needs mom immediately feels guilty for that embarrassment. We feel guilty for a somewhat typical emotion. What could I have done to prevent it? What could I have done to help my child deal with the situation? How could I have eased his pain? How dare I be embarrassed because my child can’t help it! Then the overwhelming guilt pours over us like molasses, almost paralyzing us and impossible to wash off, hindering in the crevices for days or weeks…or years later.

It’s OK moms (and dads). We’re human. Our kids are often embarrassed, too. Next time we’ll be better. That will help all of us.

Tracy Boyarsky Smith.1-001

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Autism Spectrum Disorder

To the Special Needs Parent Feeling Anxiety About the Unknown

To the new special needs parent, I was like you once, overwhelmed with sadness, anger, guilt, fear and anxiety regarding the unknown. The anxiety was so strong and overwhelming that it became an extension of myself. Questions whirled around in my head in what seemed like a non-ending loop: Will he walk? Will he talk? Why did [...]

What These Everyday Disability Phrases All Have in Common

“Confined to a wheelchair.” “Wheelchair-bound.” I was born three months premature and had to be transported from one hospital to another when I was only 2 hours old to receive oxygen treatments. It remains a mystery whether my premature birth caused my diagnosis or vice versa, but regardless, I was diagnosed with cerebral palsy at the age of 15 [...]

When People Respond to My Child’s Diagnosis With ‘Everything Happens for a Reason’

I’ve been asked many times what condition my son has. When I tell them, they look at me with a confused on their face. Prune belly syndrome is a rare syndrome, and most people have never heard of it. Honestly, I had never heard of it either – until my child was diagnosed. I start on how [...]

To the People Wondering About My Child’s Diagnosis

We saw my daughter facing challenges at a young age and knew something wasn’t right. We spent many months seeing different specialists and doctors to figure out what was wrong. I spent countless nights crying, worrying about the future and comparing my child to others. I just wanted a diagnosis to find out what was [...]