My Undiagnosed PTSD

I have read and heard it said that we all have sensory issues to some degree. Whether you cut the tags out of your clothing, get a headache from fluorescent lights, cringe at the sound of a drill, or even still get carsick, you’re exhibiting a mild symptom of SPD.

But sometimes it’s not so mild. Sometimes your senses of taste, smell, and tactile processing are so affected that you can only eat a few foods. Sometimes your hearing is so sensitive that it’s difficult for you to be in a classroom and filter everyone else’s sounds – chairs scraping, pencils writing, kids talking, teachers raising their voices, bells ringing. And forget trying to function if the fire alarm goes off. Forget being able to filter a blender, drill, leaf blower, or air hand drier in a restroom. It’s enough to make you scream. And quite often, because you can’t talk and even if you knew how to cover your ears, it wouldn’t be enough, you scream. You scream and you run. And if you can’t run, you writhe on the floor, screaming in agony.

And if you’re a parent of a child who does that, you become ultra-aware of your child’s triggers, or possible triggers. This is just one of the many reasons why recent studies (sorry -can’t seem to find the link right now) have indicated that some parents of children with autism have PTSD, from years of being hyper-vigilant, stressed, and exhausted, among other reasons. You try to second-guess every situation. You instantly notice the echo-effect or noise level of every environment and hope that your child is okay with it. You cringe when you hear a loud mechanical noise. You still check for air hand driers every time you enter a restroom, even if your child is not with you.

In many cases, as the child gets older, they learn how to filter the sounds that used to be so agonizing to them. Sometimes, they get to a point where they only have to briefly plug their ears if a sound bothers them, instead of screaming and bolting in a panic. There is a huge reprieve as the parents feel safe to go out in public again.

But some parents – and I am one of them – are still affected by the experience of having a child who screamed and bolted and writhed on the floor. Even though my son is almost fifteen and it’s been several years since he reacted violently to a sensory issue, and even though I consciously know that he is fine now and would probably not have those reactions again, I still have these subconscious fears. Or maybe they’re psychosomatic sensory issues. When we are in public and a mechanical device or appliance goes off, it’s a trigger for me. Every sound is magnified. I almost break into a cold sweat. My adrenaline starts pumping and my pulse quickens. I become hyper-alert; I instantly look at my son. Often times, the sound doesn’t appear to have fazed him. Or, if he noticed it, he merely covered his ears. Sometimes he might make a comment like “That was pretty loud.” But that’s it. He no longer screams or bolts, and he hasn’t for a long time.  

On some level, it’s like when I was in college and waited tables for my job. For years afterward, whenever I went out to eat at a restaurant, I couldn’t relax. I was constantly aware of the wait staff, how many tables they had, how they hurried. I would feel nervous when I would see food sitting in the pass-through window, waiting to be brought out to the tables, like I should get up and do it. If someone dropped or broke something, my adrenaline would race through me. For years, even after I no longer waited tables, I didn’t go out to eat much because I just couldn’t enjoy myself.

It’s been about sixteen years since I waited tables. And about a year ago, I was out a restaurant, and I noticed that I was relaxed. I wasn’t watching the wait staff. I wasn’t aware of the food coming out. I didn’t think about timing. I didn’t flinch when somebody dropped something. I realized that I was enjoying myself. So. Fifteen years. Fifteen years to get over the “trauma” of waiting tables for four years.

I don’t remember the last time that my son reacted violently to a sensory issue. I remember many of the individual instances, but not all. I’m sure that the times I’ve forgotten are those that I’ve mentally blocked, as a defense mechanism. But I can guess that it’s been about five or six years since we’ve dealt with a sensory meltdown. Since then, we’ve had meltdowns for other reasons, of course, but not sensory-related. So if my track record holds, I’ll need another nine or ten years to get over the experience of having a screaming/bolting/writhing child.

And while I know that this is nothing compared to the PTSD inflicted on many of those who serve our country, it is difficult for me. Time does heal. I just wish there was something I could do in the meantime.  

15 thoughts on “My Undiagnosed PTSD

  1. Kate

    I still have that too with smells and MCS related things. Everything in the world puts me on high alert in the same way you just described because everything in the world affects me so much.

  2. pixiemama

    You know I’m totally with you on this. It’s almost like being abused – you’re waiting for the next swing to hit. Especially when you’re the anxious type to begin with.

    Hoping it doesn’t take so long this time around…


  3. CorrieHwe

    You’ve commented on my blog about having sensory sensitivities. I am the same way. On the inside I’m wanting to scream and bolt to get away from noises. I HATE Sunday football in our home. It is my husband’s only “vice.” And he’s so wonderful and helpful, I try to allow him his one pleasure. But he has a big screen TV and surround sound. And all I can hear all day long is the never ending crowd noise. I just want to flee to my home on Sundays. However, I have to cook dinner. I’m thinking about being proactive and having crock pot meals or something already prepared for these days. When I’m about to have my monthly visit…it’s even worse.

    I used to be a hostess in college. I’m the same way in restaurants. During a recent “wait” for a table, I found myself analyzing for my husband. “The waiters are all hanging over the hostesses, so the wait is not because of the waiters are busy. There are lots of open and clean tables so it is not because the restaurant is filled. The hostesses seem disorganized…. I wonder where the problem is…”

    Turned out the restaurant had only been opened four days and the kitchen staff wasn’t prepared for the kind of business they were getting.

  4. rhemashope

    I think Kim Stagliano referred to this as the Autismometer. I cannot imagine a day when I will NOT be on high alert. As for my daughter learning to manage some of her sensory issues, your stories give me hope.

  5. Kim

    I think I will always have some sort of reaction to public restrooms after having to chase the Roc as he flees from the noise of the scary flushing toilets! I’m forever looking for an empty bathroom for him. Just thinking about it makes my heart beat a little faster.

  6. goodfountain

    I can’t say that I’ve ever been on high alert as you described due to sensory stuff as Charlotte just hasn’t been on the super-sensitive side, but more on the under-responsive side.

    I think what I may have a hard time with is the whole independence thing you write about with Nigel. Independence … no!!

    Hopefully you will indeed pass through this and eventually NOT be on the high alert all the time.

  7. Joanie @ The Bright Side

    The phone ringing during school hours, that gets me every time. We’ve had too many calls from the school in the last year. Oh, and babies crying in restaurants that use to be an instant trigger for my son. I still freeze when that happens.

  8. Alicia

    In totally with ya on this. There’s a term in the PTSD lingo called “Vicarious Traumatization” – i think its fitting for parents of kids who went through things like nigel did as a baby/child…

  9. kristi

    Wow, this makes sense. I cannot stand tapping or clicking (pens, smacking gum, etc..). Part of it I blame on my older brother who always had to be making some kind of noise!

  10. Joell

    Stumbled across your blog when I was googling noise sensitivity and autism. I have a 14 yr old boy dx with Asperger’s when he was 5 who is extremely noise sensitive, mostly to the sudden laughter of others. It leads on occasion to major meltdowns…a few of late. Just when you think things are getting better, WHAM!

    You described me to a “T” when you were talking about being hyper-vigiliant and second guessing every situation. And breaking out in to sweats?? Oh yeah, that’s me! So nice to be reminded that we are not the only ones.

    So glad I stumbled here. I’ll be back.

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