12 Things Parents of Kids with Autism Want You to Know

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April is Autism Awareness Month! As the parent of a kid with Autism, this month has definitely become important to me. Not because it brings attention to my family and our situation, but because this is an entire month where the information I’m putting out about Autism is really getting absorbed!

Did you know about one in every 59 kids has some version of ASD or Autism Spectrum Disorder? Did you also know children can be diagnosed as early as two years old and boys are four times as likely to be diagnosed than girls? Well, both of those apply to my family: Jackson was 22 months when he was diagnosed, and we had concerns when he wasn’t speaking at all at his 18-month wellness visit.

Autism is a sensitive subject, especially to those just meeting someone with it or someone with a kid with Autism. I wanted to do my part in shedding some light on some things to keep in mind during those interactions. As my first tip implies, all Autistic people are different. They may share some qualities but no two are the same. Please take that into account when reading the tips below.

12 Things Parents of Kids with Autism Want You to Know Charleston Moms
Photo credit: Ruta Smith

1. WHEN YOU’VE MET ONE PERSON WITH AUTISM, YOU’VE MET ONE PERSON WITH AUTISM.

This is a very common phrase in this community but encompasses the description perfectly. Autism Spectrum Disorder is a spectrum because the range is so incredibly large. Types of Autism range in everything from communication skills, social interaction, cognitive abilities, repetitive behaviors, and more. Just like with neurotypical kids, kids with Autism should be treated the same and play their strengths while working on their shortcomings.

2. YOU CAN’T ALWAYS SEE AUTISM.

One of the most insulting things parents hear has to be “they don’t look like they have Autism,” like it’s a physical disease or something. It goes right back to the infamous quote above and is incredibly rude. Many assume children with Autism have physical, recognizable features that let them know when that is not always the case. That stereotype is extremely frustrating to us parents, so please just be kind.

3. MY HOME IS SAFE AND CLEAN. BELIEVE ME.

Every parent has baby-proofed their house at some point or another. With our family, we have it “Jackson proofed.” We do have baby gates and doorknob covers for our younger children in the house, but they also apply to Jackson for his specific reasons. For example, not only would he open doors but he would lock himself in closets, and we wouldn’t know. (Can you imagine your nonverbal kid locked in a closet, and you’re calling out to them with NO idea where they are? ARE YOU SWEATING YET?)

4. SPEAKING OF NONVERBAL –  IT DOESN’T MEAN HE’S DUMB.

Jackson has very limited communication with us, and he’s just started to use his PECS board (picture exchange communication system). He can TELL us through the board “I want a snack” or “I want water” and that is it. However, he does know more. He can hear us, and he scripts things he’s heard numerous times – he just doesn’t know how to apply them. For example, he knows his ABC‘s but will sing them when he wants to or hears the song, not by asking “where’s the B?” We watch StoryBots on Netflix religiously, and he knows some of the songs but only with the show, not without. It’s a mistake to think just because a child doesn’t verbally speak that they don’t have thoughts or cognitive function. They just communicate in a different way.

12 Things Parents of Kids with Autism Want You to Know Charleston Moms
A blue Trick or Treat Pumpkin signifies the person has Autism & doesn’t verbally communicate.

5. ASK US IF WE HAVE A ROUTINE.

When many think of Autism, it’s assumed that the family has a very strict schedule in place. Wake up at this time, eat this food, etc. In a lot of cases, that’s true! I know some families where the child will recognize going a different route home due to traffic, and it did not go well. With our family, Jackson is the complete opposite. Schedules barely exist because he is so fluid! Some may think it’s great, and to a degree, it is! However, he’s so fluid, he is constantly changing it up and doesn’t stick with something longer than five minutes. He’s not diagnosed with ADD, but I wouldn’t be surprised if it applied. Please take any possible routines into account when making plans with us because some things need to stay in place in order for our own sanity.

6. THERE’S NO NEED TO TAG US IN EVERY ARTICLE ABOUT AUTISM.

As a parent of a kid with Autism, I am a research junkie. I do my best to stay up-to-date on new findings, assistance, programs, etc. to help my kid out. I’m part of many FB groups where articles are posted hourly, so they are all I see. We understand friends mean well by tagging us in the latest article you’ve seen; but, honestly, we’ve probably already seen it. Please take into account that we’re more than the friend with an Autistic kid and give us credit.

7. KEEP ADVICE TO YOURSELF.

And while we’re on that topic, keep your advice to yourself. ALL OF IT. Parenting Special Needs kids is an entirely different book than those of neurotypicals. We don’t need to discipline them more or try this new medication. We know what’s best for OUR child just like you know what’s best for yours. This is our niche, and we’re doing the best we can.

8. WE ARE LONELY – INVITE US.

Just because we have a different situation with our child than usual doesn’t mean we don’t want to get away like parents usually do. Or even just generally socialize because who doesn’t like to BBQ? We understand we could be asking for more, and we may even say “no” to every invite, but Autism can be extremely isolating so please keep friendly nudging us to remind us you’re there.

9. WE CAN’T JUST “GET A BABYSITTER.”

On that same note, finding childcare is ridiculous. We can’t just hire someone from Care.com or have the neighborhood kid swing by for a few hours. My family is very fortunate to have worked out a contract with one of Jackson’s previous ABA (Applied Behavior Analyst) Therapists to be our nanny/babysitter. She is one of two people we feel comfortable leaving him with knowing 100% he will be fine. Strategies must be learned over time for people to see how Jackson functions or if he even gets along with you in general! So please continue to ask us out but know we have very limited windows of opportunity.

10. WE ARE NOT AUTISM EXPERTS.

We, as parents of kids with Autism, are not Autism experts. We may know more than the average person on the street about it, but we don’t know it all. We’re constantly learning something new every day with whatever our child presents us with. Whether it be a new food aversion, sensory seeking/avoiding, or a new stimming action is presented – we roll with the punches!

11. MY CHILD ISN’T TRYING TO BE DIFFICULT.

Kids with Autism aren’t a child walk in the park. We know that, but we hope you know they aren’t doing this on purpose. They’re just trying to figure out how to function best in our world, so we try to meet them in theirs. Please be patient with them and us.

12 Things Parents of Kids with Autism Want You to Know Charleston Moms12. ACCEPTANCE OVER AWARENESS.

Although April is Autism Awareness Month, it’s also recognized as Autism Acceptance Month as well. As beneficial as it is to be aware of the differences between all kinds of people, we also should be accepting of the differences as well. It’s one thing to see someone with Autism stimming and acknowledge it but another to understand why the stimming exists in the first place. Make sense?

Bottom line: Just be kind to everyone, regardless of their circumstances or differences. We’re all out here parenting in this difficult world so the least we can do is be nice to each other. Be considerate of everyone, and I hope you learned something from my article!