The Unbearable Uncomfortableness (at times) of Being an Autism Dad

When people respond with critical remarks in difficult moments

I’m learning there are good and bad days to take my son to McDonald’s, and today was not a good day. There was not an empty seat in the dining area of the play place. The volume of the squeals was more ear-piercing than usual.

I considered making up a phony excuse to tell him why we had to leave, but he loves the Play Place and followed a boy into the play structure and I ignored the voice I heard saying to me, this is not a good day to come to McDonald’s.

I knew the screams might tip his senses overboard, and I would be the one responsible for what happened since I know he has difficulty with regulating his body in highly-stimulating environments with lots of noise and activity.

Five minutes passed. Ten. Maybe fifteen.

Maybe, you know this feeling if you’re the parent of an autistic child. You accept and love your child, but the possibility of them experiencing sensory overload can make outings fraught with uncertainty. One mom I know doesn’t even take her son to McDonald’s because of his sensory tendencies.

I started to panic

I winced with every shriek I heard as if they came from an Edgar Allen Poe short story. But I did nothing to prevent it. And then I heard a wail. It came from inside a yellow octagon. It echoed through the room. I crawled through the tunnels to reach the sound, knowing my son was involved, but a mom beat me there and she was cradling her daughter in her arms.

The girl was small and thin, maybe four, and she looked like a baby bird with an injured wing in her mom’s arms. My son was not there, but I asked the mom if she knew what happened, and the few details she gave confirmed my suspicion. My son — really me — was responsible for what happened.

“A boy was on top of her.”

“Do you know which one?”

“The one with the hood.”

My son. I burrowed through the tunnels at six-foot-three like a gopher underground to search for him, and when I located him, I asked him if he was on top of the girl in the yellow octagon. He looked away and didn’t respond.

“The girl’s mom said you were on top of her. Were you on top of her?”

Silence.

“Were you on top of the girl?”

He looked directly at me. “Yes.”

Previous close calls

So we left McDonald’s, and as we drove home I pondered whether or not I should continue taking my son to McDonald’s Play Place. There have been a few other close calls when he became overstimulated on days when there were many kids, but it’s been good times with no incidents for the most part.

There was one incident at an indoor playground when he pushed another boy into a wall, leaving a golf ball size bump on his forehead and a pissed-off dad.

We left in a hurry, and I thought about taking my son to a police station to have an officer explain to him how causing bodily harm to another person is a crime, but then I realized he is five, and so I know that my discretion is the key factor in determining when is a good or bad day to come to McDonald’s.

The neurological divide

Today was not a good day, and I wish I could explain to the mother of the girl how my son’s body is neurologically wired differently from most kids, and this can cause his senses to become overstimulated and to lose control of his body.

But how do I explain this to a neurotypical (non-autistic) parent of a neurotypical child whose neurotypical parents and siblings likely have never considered there are other kids whose sensory systems are wired differently?

Would this mom understand we all have a vestibular, proprioceptive, and tactile system as a part of our sensory system? And if these systems are not functioning right it can cause a child to have difficulty regulating their body?

Do I try to explain to her that we have tiny canals in our ears as part of our central nervous system, whose function is to integrate external information from our senses, but if the neural circuitry is impaired in the canals, a kid who has an atypical sensory system can sometimes feel like an astronaut floating in space if their body’s proprioceptive system doesn’t receive enough sensory input, and this could be the reason my son ended up on top of her daughter?

I’d sound like a lunatic, but he is what my son’s occupational therapist has explained to me on why he often has a difficult time regulating his body.

“A terrible parent”

Last week, a self-described “mother of four boys” told me I was “a terrible parent” after she saw me tugging my son by the arm in the parking lot of Barnes & Noble. Not that I am excusing my behavior, but what she missed is the antecedent behavior: My son had rendered his body limp, wriggled his hand loose from mine and laid down in the parking lot — to mess with me.

So here’s the conclusion I came to after ten minutes of deliberating with myself on the drive home: My son deserves to keep coming to McDonald’s, just like every kid does. He is learning to self-regulate his body, just like all kids are learning different things and, as a dad, I am learning things too.

I’m realizing I need to be able to recognize the difference between a good day and a bad day to come to McDonald’s and to recognize when the noise level reaches a point where it will have a negative effect on his sensory system.

I’m realizing I need to be willing to explain to my son why we have to leave on days when the play place is filled with too many ear-piercing shrieks and screams because this will make it difficult for him to coordinate his body.

I’m realizing the problem was me just as much it was my son’s body.

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