The People You Meet Along the Way

When I first received the news that my son had autism over three years ago, my mind instantly started making a list of the potential challenges that awaited us in the future.

Will he ever talk?

Will he ever be potty-trained?

Will he need to be in a special classroom with other disabled children?

Negative or difficult scenarios would keep me up at night, and I’d toss and turn thinking about how I was going to help him face each one.

Fast-forward three years later, and ironically, many of those scenarios and worries have diminished. My son has learned how to communicate his wants and needs, he is potty trained (though it was QUITE the process), and he is integrated in a typical classroom. During this journey, however, there has been one component that I didn’t anticipate: other people.

Our family has interacted with many people since receiving that autism diagnosis, and the majority of them have fallen into one of the following categories.

1.The McCarthys

Almost immediately after our son was diagnosed, I began meeting and hearing from people who knew of “cures.” The moment they heard my son had autism, they would launch into a list of herbal supplements, technology programs, or diets that I just HAD to try. Honestly, these people are the hardest for me because they feed into my deep desire to help my son.

All I want is for him to be happy and healthy, and these people claim to have the answer! They were just so sure that my son could be cured, and we did try many of their suggestions for a while. Every time something didn’t work, however, it was almost as if I had to accept the autism diagnosis all over again.

2. The Pity-Partiers

We’ve also met people who, the moment they hear our son is on the spectrum, tear up and reply as “Oh, I’m so sorry” and “I can’t imagine being in your situation.” Things that you would say to someone who has cancer or a terminal illness, not a family with a child on the spectrum. This person thinks they are expressing sympathy, but you walk away from conversations with them feeling horrible about your life.

3. The Wardens

Every parent with a child on the spectrum knows that there are certain accommodations that MUST be made for our kids. When I go to the grocery store, we won’t make it out alive unless I bring a bag of Pirates Booty popcorn and a juice box. When we visit other people’s homes, my son will (carefully) rearrange certain items in their home and examine each piece for hours sometimes. When we make plans to visit new friends, this is mentioned beforehand to make sure they are comfortable.

Unfortunately, there are people in this world who think these accommodations are spoiling or unnecessary. We’ve gotten some pretty nasty stares from people in restaurants when they see my son on his iPad. We’ve also been in situations where individuals ask us to stop our son from stimming (even though he isn’t hurting anyone or anything.) Accommodations…we have to make them for our kids, but some people will either silently or loudly object.

4. The Houdinis

Some of my closest friends pre-diagnosis are no longer in my life. We didn’t have a dramatic fall-out or move to another state, but autism doesn’t fit into their life. I’m not angry over these lost friendships; I understand how fitting autism into one’s life isn’t always easy or desirable. Our relationship just doesn’t work anymore. On the other hand, I’ve met several people who go above and beyond to include my son and his particular needs in their life. While you will definitely mourn the loss of friendships, pay close attention to the ones you gain and make sure they know how appreciative of them you are.

5. The Keepers

I remember the first time I met my friend Hannah*, and I introduced her to my son. I started explaining how Levi is different than other kids. I prepared for her to be placed in one of the categories listed above, but instead she responded, “Oh! I’m sure my girls will love him! When can we get together?” I stood there, at a loss for words. The idea that someone could see past the big A(utism) word, almost as if she didn’t hear me say it, was shocking to me.

I hope and pray that every autism family meets at least one person like this. Someone who treats your kid like a kid, who knows they prefer high-fives to hugs, keeps your kid’s favorite foods in stock at her home, and buys Hot Wheels for your kid’s birthday because she knows how much he LOVES to line up his toys.

Once I learned that everyone I meet along this autism journey falls into a “category,” it helped me disconnect from the unhelpful or negatives responses. I’ve gotten stronger at de-personalizing comments. Instead of crying in my car, I walk away and think, “Oh, she’s definitely a McCarthy!” Every day I’m learning how to focus my energy and attention on helping my son become the very best version of himself because ultimately, that’s the ONLY thing that matters.

Written by Shirley Palus

Shirley Palus is a stay-at-home mom to her daughter Adaline and son Levi, who is on the autism spectrum. She spends her time cleaning up other people’s messes, cooking dishes that no one wants to eat, and helping her husband finds his keys/phone/wallet/etc.

*Name changed for privacy

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