A few days ago, I was talking with a couple of colleagues at school. One of them teaches a class with little girl who has autism in it, and she was thrilled because the girl actually came up to her and tattled on another child. She was just so happy to see her engaging in conversation and speaking up for herself. This led us into a conversation about how we approach children with autism differently from neurotypical children.
This led my colleague to ask a question that I think many are wondering but are afraid to ask, “What’s it like to raise an autistic child?” I thought I might try to answer her question here. Please know that I can only speak for my own autism parenting experience, because each family has its own unique set of circumstances. There is a saying in the autism community that if you have met one autistic person, you have met one autistic person. I know that many children on the spectrum display much more severe behaviors than what we deal with on a daily basis.
So, with that disclaimer, I give you…
10 Ways I Parent Differently Because My Child Is Autistic
1) I let my kid jump on the bed…
…or at least I did before we bought him a trampoline. I learned when Ben was very young that he needs to move- all the time. I never take away his physical outlets as a consequence. Ben has sensory needs that must be met. If left unchecked (as in if he sits too long without a motion break), he can become overstimulated, anxious, or dysregulated, which can lead to intense emotions. Jumping helps. So does crashing into a mat and swinging. We have an indoor swing in the playroom for this very purpose. Many neurotypical children enjoy swinging, jumping, and crashing. For Ben, it is a necessary as eating, breathing, and sleeping.
2) I pack him the same lunch every day
Yes, I want my child to have variety in his diet as much as the next parent, and we encourage him to try new foods as much as possible. However, there are only a limited number of foods that Ben will eat. Part of this is because he’s bothered by foods with texture. Part of this is because he likes routine and consistency. He requests the same cereal every morning when he gets his breakfast at school. God bless the cafeteria ladies who save him his favorite flavor of juice. This is also why I pack him essentially the same lunch every day. We’re working on the food thing as best we can but it’s not easy, so we pick our battles.
3) I discipline differently than most parents
Early on, I learned the difference between a tantrum and a meltdown. A tantrum happens when a child decides to throw a fit to get his way. You can spot a tantrum because a child is watching for your reaction and is in control of the tantrum and can stop it at any time. A meltdown occurs when a child becomes overwhelmed by sensory input or is emotionally dysregulated. A meltdown is much more emotionally intense than a tantrum, and once a child reaches a full-fledged meltdown, they are no longer in control. A meltdown is just as scary or more for the child than it is for those watching it happen. So, yes, we have rules and consequences for our son, and we try to be very clear about our expectations. Our son’s behavior is almost always presents itself as an emotional outburst (often tears) as a result of frustration sensory overload, or an unexpected change in routine. Therefore, while we give consequences, we are very gentle with him and try to give him tools to handle his big emotions. When his emotions ramp up, then I have to make myself very calm. Which leads me to…
4) I spend most of my money on squishy balls and play-doh
Now I know that some of you are thinking that your kids like these things too, but for my kid, they are a VERY big deal. One of the strategies we’ve taught Ben for dealing with his emotions is to squeeze a squishy ball. He has a huge collection of them for this very purpose, and heaven forbid one pops, rips, or breaks. We have social stories ready for this very purpose (sometimes our toys break…).
Play-doh is another necessary tool. It builds hand strength which helps him with fine motor tasks like writing. One of his favorite things to do is open a brand new container of play-doh and inhale its unique smell. Recently we learned to make play-doh using Kool-Aid and he’s been in heaven experimenting with different scent combinations.
5) My life feels like one big movie script
Many children on the spectrum who are verbal like Ben engage in something called echolalia. They parrot phrases they hear others say. Sometimes they may repeat a word or phrase right after the speaker says it, but in Ben’s case, they’re often stored away for later. Often called scripting, Ben memorizes lines from favorite books and movies and uses them during conversations and playtime. I know that his teachers think that he has a vivid imagination (which he does), but they probably don’t realize just how often he is channeling one of his scripts. For example, when he says “We regret to inform you that chapter three was a dream,” he’s quoting “Bad Kitty Gets a Bath,” and when he pretends to hack up a hairball in class (sorry Mrs. B), he’s acting out a scene from “Bad Kitty School Days.” He uses lines from these scripts in conversations, which he did tonight when he called Daddy back upstairs after bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from the movie Despicable Me (Daddy did forget the kiss, and I knew Ben would be calling for it). Ben has been scripting for a very long time. In fact, I remember making a “cheat sheet” of Ben’s words and phrase for my parents (who live out of town) one summer when they came to watch him for a few days.
6) We live our life by rituals and routines
Every parent knows the importance of having consistency and routine in their child’s life, but for Ben this predictability is his rock in what can be a chaotic and confusing world. I’m reminded of this any time I deviate even slightly from our rituals. Bedtime is a great example. I’ve never taught him to do this, but I swear my kid can tell time. If I try to start the routine a few minutes before the regular time, he’ll point to the clock and protest, “It’s too early!” After teeth, books, and a story of what’s happening tomorrow (our social story which prepares him for the events of the next day) and prayers, I say the same phrase, “Mommy will be on Mommy’s bed. Ben will be on Ben’s bed. Have a good night sleep and I’ll see you in the morning.” There’s something sacred about our ritual. He needs it to feel centered and secure.
7) I celebrate the little things and find joy in ordinary moments
Most parents take for granted that their child will walk, talk, wave “bye-bye,” say “I love you,” ride a bike… For some parents, each of these milestones is a long time coming, if ever. So I try to never, ever, take for granted the progress that Ben makes. Like the first time he had a real conversation with another person. Or the time he started a game of hide-and-seek with some kids at the playground. Or the moment when he snuggled up to me in the chair and leaned over to kiss me on the cheek. These moments take my breath away.
8) I let my kid have an iPad
Yes, I said it. My kid has had an iPad since he could barely walk. I know that some view this as indulgent but I have seen Ben benefit from the programs it offers. We limit the amount of time he uses it, and lately he hasn’t even asked for it at home in the evenings because he is busy with art projects or checking on his trains. However, I do rely on it when we have to wait for extended periods of time at the doctor’s office or if we take a long car ride to a therapy session. And, on the days when he has to stay a long time in the after school program, it gives him something to share with the other kids. The coolness factor certainly doesn’t hurt.
9) I honor my child’s requests whenever possible
When Ben lets me know that something is too much for him, I listen because I’ve seen what can happen when I fail to heed his warning. Like the time I kept him in a dark theater when he was petrified of the huge dragon puppet and then wouldn’t go into another dark place for months. So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request. This doesn’t mean that he always gets his way. If his safety is at risk or if there are existing plans that cannot be altered, he does have to learn to deal. But, if I’m able to give him choices, I do. And if his request is a reasonable one that I can honor, I always will. I want him to know that he can always communicate his needs to me and that they’ll be heard and respected.
10) I compare my kid to my kid
Another thing I stopped doing very early is worrying about what my friend’s kid on Facebook is able to do that my kid can’t. I’ve learned it’s much more productive to measure Ben’s progress against himself. And while this doesn’t mean that I don’t have goals and expectations for him, I’m not going to stress if he’s not making the most soccer goals or if he doesn’t make captain of the debate team. If he gets those things, it’s definitely a bonus, but I’m cheering for the progress he’s making, because he always gets there in his own time.
And here are:
5 Things I Expect of my Autistic Child
1) I expect my child to have manners
This includes everything from saying “please” and “thank you” when he receives an item to waiting for his turn to talk in a conversation. We’re still working on manners but he’s getting there.
2) I expect my child to pull his own weight
Ben is responsible for picking up his toys and doing his chores which include taking in and out the trash and feeding the dogs. He carries his dishes to the sink and puts his clothes in the hamper. Ben is my helper at school and often runs errands with me at the end of the day. Heavy work is a form of occupational therapy and helps with keep him centered. Plus, it’s great for character building!
3) I expect my son to show kindness others…
…and I hope that the world will show kindness to him in return. Ben is one of the most loving people that I know.
4) I expect my son to work hard and do his personal best
Life can be extremely frustrating for him because it does not cater to his style of learning, but this is not an excuse to give up. Every day is a lesson in perseverance and problem solving. When his Legos break or he can’t get the glue bottle to work, I expect him to find strategies to deal with this, even if it’s as simple as asking for help. This does not mean that I am going to push him to his frustration point or expect him to act like every other child. My job is to provide him the support that he needs to be successful, and then to gradually take the support away when he is ready, which leads to…
5) I expect him to learn independence
I have full confidence that there will come a day when my son will be a successful, contributing member of society. I remind myself on a daily basis that, even though it takes longer, I have to let him learn to do things on his own. Whether it’s styling his own hair or giving himself a shower, he’s slowly learning the skills it takes to be an independent little man. I could not be prouder.