With April being Autism Awareness month, I thought I’d share the top 10 worries of parents of autistic children (both high and low functioning).
1. Deciphering physical needs
Understanding their physical needs–especially if they are non-verbal or minimally verbal is complicated. Will I know if he has a headache, a toothache, or how he feels when he is sick? For most of us with lower functioning kids this is a major struggle. It is like having a giant infant. You have to go by what you see in their eyes and by monitoring how they act and behave. You have to trust your gut and hope that you are guessing right. It is tricky!
2. Peer interaction
I worry about this especially for my son with high-functioning autism, because he is aware enough to know when he is being treated unkindly. He also might not understand why teens react or behave certain ways because he doesn’t intuitively understand facial expressions or behaviors or comfort zones or keeping the conversation evenly flowing between two people and not speaking about his favorite topic for 30 minutes straight. I must say that now that my boys with autism are teenagers it is harder to have a son that is high-functioning on the spectrum with all the craziness of teenage interactions.
3. Providing their entire lives
Providing for a child with autism means that I need to make sure they are taken care of not only until they are 18, but clear until they die. That is a lot of money. Most parents only have to worry about getting their kids out of high school or through college…but we will never be an empty nesters. We will have our buddy Nathan with us our whole lives. I’m okay with that concept now, but I had to change my expectations of my entire life after he was diagnosed.
4. Abuse and Bullying
You hope that good and kind people are taking care of your child with autism when they are at school, at respite, with a babysitter, etc. With all of the abuse that is prevalent in the world today I do worry and do my best to keep my sons safe (especially since one of them couldn’t tell me if anything happened).
With my son that has high-functioning autism I worry about social media bullying and abuse. This is so rampant with normal children that I am concerned that he will be on the receiving end of social media bullying.
5. Bowel Movements
When was the last time they pooped? Most kiddos on the autism spectrum struggle with this. It is a common thread of conversation if you ever have two mothers of autistic kids chatting. Sigh! Yes, we do have to monitor this and give them their daily dose of a laxative and even help them “give birth” sometimes.
So, unlike some parents that only have to worry about bowel movements while their children are in diapers, this is something I get to worry every day for decades.
6. Eating healthily
Ah yes, the sensory issues with food for children with autism are a little crazy sometimes. I still can’t get Nathan to eat mashed potatoes. The texture is too crazy for him. Nathan can also sniff out any sweets I might have hidden in the house, and unlike my typical children, if he finds a stash of candy he shows no self-restraint. We also have a lock on our pantry door so we can stop him from snacking on potato chips. Getting someone who is mostly non-verbal to understand why it is important to eat wisely for health reasons is darn near impossible.
So yes, I worry if Nathan is eating healthily on a daily basis and I probably will for many years to come.
7. Going out in public
If children with autism are runners, you worry you will lose them or that they will run into the street because they have no concept of danger. You also have no idea if they will react happily or unhappily if you take them somewhere–especially somewhere new. They might throw a tantrum. They might be overstimulated by a crowded environment or a scent. Since these kiddos on the autism spectrum are more sensitive to almost everything you never know what will set them off. Taking them out in public can be an adventure in craziness.
8. What if they get lost?
This is my nightmare! What is they get lost and can’t communicate who they are and how to contact their parents? This happened to us once when Nathan was unintentionally left by his school class at a Walmart. It took the police officer and security officer about an hour and a half before someone thought to have Nathan write his address or name or phone number since he couldn’t communicate it verbally.
9. Clothing (or lack thereof)
When Nathan was little, he preferred to be as close to naked as possible. He was too sensitive to having clothes touch his body. We had to cut out every tag. He would only wear clothes with a stretchy waist. He hated having shoes and socks on. We couldn’t keep him dressed for very long. One summer day we were having a party in our backyard with a waterslide and Nathan (age 6) took his swimming suit off and was sliding buck naked! Sigh! Thank goodness he is much better at keeping the bare essentials on now that he is 19-years-old.
10. Sleep (or lack thereof)
Making sure they (and you) get enough sleep is a daily battle. I don’t know why kids on the autism spectrum don’t sleep well or very long, but it is exhausting to try to get them to go to bed, stay in bed, and sleep past 4:00 am. And of course, if they are tired they act out, and if you are tired, it is hard to handle everything.
For those of you who don’t have kiddos on the autism spectrum, I write this post to improve autism awareness so that you can catch a glimpse of what the parents of children on the autism spectrum deal with on a daily basis.
My hat goes off to any caregiver. It is a tough job that we do because we love our kids/adults, and with all their craziness we wouldn’t trade them (well, maybe we’d think about it at 3am when we are exhausted). jk
Call to Action
Share to spread autism awareness! Comment to tell me some other worries you have or relate to.