Autism Didn’t Ruin That Event. My Own Expectations Did.

A few months ago, I watched a home video on Facebook. It really disturbed me, and to this day, it still weighs on my mind.

It was Christmas time, and the family was gathered in Grandma’s living room. There were untouchable trinkets everywhere – because well, it’s Grandma’s house.

Santa was also there to visit with the children, and a little girl was sitting on his lap. In the background, I could hear a boy crying.

I couldn’t see the child, but I gathered that he was autistic from the caption of the video. It read, and I’m paraphrasing from memory…

“…This shows how autism can steal away happy moments for our family…”

Now I try not to judge any parent. I know how hard it is when you plan or attend an event, and nothing goes right. Parenting can be like that.

But before blaming autism, we as parents need to take a good hard look at ourselves. Did we keep our child’s needs in mind when we planned the event?

Was the setting appropriate for my child? What was the goal of the event? Could that goal have been accomplished differently?

Is this an event for my child to enjoy, or is it for my own interest? Is Santa creepy, and is my kid smarter than me?

Allow me to put this in perspective with a slightly more comical (or horrifying) story…

When my older son was four, I took him with me to run some errands. I was picking up tins of gourmet peanuts for my mom so she could mail them out.

2014-12-11 20.28.34

Because our order was so big, the receptionist asked us to pick it up in the factory building. So we drove over and went inside.

The factory was huge! There were burlap bags of loose peanuts stacked higher than my head.

I turned around and looked at my kid. He was as still as a statue and gasping for air.

Did I mention he was severely allergic to peanuts? Yes, I know. Mom Fail. Stop judging me.

I immediately took him outside, gave him his inhaler, and went to the house to give him a bath and burn (change) his clothes. He rebounded quickly.

But I was disappointed. My entire trip was ruined because of his peanut allergy. Running errands is really important to me. But instead, I had to stop everything and take care of him.

See what I did right there? ↑↑

My day wasn’t ruined because of his allergy. His day was ruined because of my poor planning. I didn’t have his specific needs in mind before rushing off to do my normal activities.

The same principle holds true when parenting an autistic child. Our children have specific needs. We as parents need to learn what those needs are, and make adjustments to accommodate them. Period.

I know it can be confusing at first when your child is little. You and your child haven’t learned all the triggers and sensory needs quite yet. But you will in time. And yes, you will have parenting fails like me.

But in no way does that make it autism’s fault. Because in reality, we’re saying it’s our child’s fault. And that’s never true.


Furthermore, I’ve learned that I can’t separate autism from my children. It’s an integral part of who they are. They’re autistic. It was important for me to understand this early, so that I didn’t damage their own self worth by complaining about “their autism.”

Since my twin’s were born, we’ve pretty much overhauled all of our activities and traditions. We do holidays differently. For instance, instead of watching the parade from the street, we hang out in a hotel room right above it.

We go on different outings. Our area (Hampton Roads, Virginia) has an active autism community with tons of activities. So we stick to the sensory friendly events where we know there’s no pressure.

And we only spend time with people who are on board with accommodating their needs.

Because that’s what parents are supposed to do – understand what their children need, and plan life accordingly.

And you know what? I love our new lifestyle (not that it’s always a walk in the park). I love our new (and tried and true) friends. And I love to see my children happy.

Follow our journey on Facebook at Not an Autism Mom. I’d love to see you there!

Thank you for visiting.

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10 Replies to “Autism Didn’t Ruin That Event. My Own Expectations Did.”

  1. Hi there! I found your blog a roundabout way, clicking on a linked twitter thread that included someone quote tweeting one of your blog posts…and voila! I’m autistic, not diagnosed until the age of 25 (~1.5 years ago, probably didn’t help that I’m a girl) and I’m loving your blog. I was excited to see we actually live in the same area! I had no idea there was any kind of active autism community here, and though a lot of the events I see just briefly checking that link you posted are for kids or younger teens, it’s still exciting that there is a community! Thank you for this blog, I’m so glad I found it!

  2. Hello! Great post! Something that we as autism parents don’t often think about. However, I think the individuals post was to show people what really happens. Maybe not the correct language but the reality. The dynamics of an autism family are so different and when you have multiple children you have to find the balance to ensure the non-autistic child isn’t missing out.

    1. This is true regardless of whether you have a disabled child or not – anyone who has multiple children has to strike a balance between the needs and desires of each child. If you have a six year old and a toddler, for example, when taking the 6 year old places, you have to weigh whether you can take the toddler along (and risk them having a totally normal toddler issue that ruins the trip), leave the toddler home along with one parent (and have the older child miss out on sharing the event with that parent), or find someone to babysit (which isn’t always easy even for non-disabled kids).

      It’s more true when one child is disabled – whether that be autism, a peanut allergy, or anything else. Pretty much any disability is going to mean having to consider things that wouldn’t be an issue for most kids, but do affect this child’s ability to be safe and happy and present at an event. Especially since many events aren’t accessible for many disabilities.

      It’s important to remember, however, that no matter what the reason, it is not the child’s fault that their needs were incompatible with the event, and it is the parents’ responsibility to make sure those needs are met, rather than filming a child in distress at an inaccessible event in order to whine about them being disabled.

      1. You’re not an autistic parent if you’re not autistic.

        FTFY. YW. After all, the term ‘autism parent’ doesn’t mean what you clearly believe it does, so your conception of it is wholly inaccurate.

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