Dear autism moms, I'm sorry that you're sorry

Tulika Prasad

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If I had to list the top 3 things my son enjoys, they would be:

1. Water
2. Water
3. Water

So chances of finding us at a pool in summer is always higher than at home. That day was no different. We were at our community swimming pool watching our son living his life like he was made for water. A little while later, another family strolled in with a teen-age son. After settling in, they helped their son get ready to get in the pool. He sat at the edge, chilling in the sun while his feet dipped in the cool pool water.

All was okay until his mom tried to get him in the pool. She probably thought he would enjoy cooling off. He obviously didn’t because he immediately had a meltdown. He was apparently non-verbal and was now upset so he was making some loud incoherent sounds, showing his resistance, all this while being a little aggressive towards his mom, though nothing that his parents could not handle.

I could see his mom steal side glances to check everyone else’s reaction. She was clearly flustered, more so because of the situation unfolding in public than the actual meltdown. The meltdown was the easier part, the glances that she was getting, not so much!

My son, who is sensitive to loud noises and gets a little upset even at the sound of a baby crying, was obviously getting progressively uncomfortable and you could see it in his body language. After the teenager calmed down and his parents smoothed their feathers, his mom started with the apologies, saying “sorry” to those around who she thought might have been affected by the incident.

When it was my turn, I replied with, “My son has autism. I understand. I’m sorry your son had a rough time. Hope he is doing fine now.” The mom smiled and sighed with what seemed like a relief. We chatted briefly because autism moms tend to bond sooner than others and then parted ways.

The very next day while at the self-checkout counter of a grocery store, I noticed another teenager with his mom and little sister at the counter next to mine. The teenager was not really having a meltdown but he was upset about something and he was making no bones about it. He was vocal, if not verbal in his frustration. The mom, while trying to reason out with him, was also profusely apologizing to people around her. I smiled and moved on with my business, wondering about the two incidents in the past 24 hours.

Parents of kids with autism very often get into a habit of apologizing. We apologize because our child is making noises that sound unusual. We apologize because our child is hyperactive. We say sorry because our child wanted to be friendly and doesn’t know the socially accepted way to do that, we apologize because our child is using his fingers to eat his food at our table for which we paid from our pocket but a random stranger is offended by it. We apologize and then some.

More often than not, we basically apologize for our child’s condition. However, I’ve not seen anyone apologize for staring at our kids, or for having their child completely ignore ours while the rest of them play together, or for calling our child weird, or for pulling their child away when they were trying to be friendly, or for never inviting our children over for birthday parties, or for those hundreds of times when we and our kids were made to feel unwanted and invisible--for not being inclusive enough.

No one apologies, but we autism moms have a bagful of apologies right at our disposal. So today, I want to reach out to all those moms and say that I’m sorry that you have to be sorry. I’m sorry about all those times you’ve felt judged, I’m sorry about your child’s meltdowns, I’m sorry that you feel alone. I’m sorry that you have to fight for everything that is rightfully your child’s, I’m sorry that the world is still not ready for our children. I’m sorry that you need to explain yourself and your child so often.

I hope this changes, but until then I want you to know that I am you and I’m really sorry that we have to be so sorry so often.