The Game I Use to Explain the Challenges of My Son With Autism to Those Who Don't 'Get It'


I was talking to some friends the other night, and we were discussing my son and his autism. They were trying to figure out why Soren knew certain things one day but not the next, or why he would progress in certain areas and fall behind in other areas. I explained in the technical terms, and they didn’t quite understand. So I gave them my best analogy for it, and it seemed to help them understand a lot, and so, I would like to share it in hopes that it may help some of you.

Do you remember the old game Jenga? The one with all the little wooden, rectangular pieces you would stack in a tower, then have to remove one from the bottom and put it at the top without making it fall? You can think of my son like a human Jenga tower. You see, Soren is a very smart boy and is eager to learn. He wants to be able to do all the things his peers and elders do, even if it can be difficult for him. So he will practice and practice until he learns a new “trick.” (That trick may be running, learning how to throw a ball, learning how to make an unscripted sentence, etc.) Then, when he masters this new trick, something else may fall behind, or he might forget things he already knew. This is the metaphorical removing of the lower block and replacing it on top.

And along his way to learning new “tricks,” we encounter lots of meltdowns. Maybe he can’t master the art he’s going for, so he melts down. Maybe he did it incorrectly and someone corrects him, so he melts down. Maybe on the process of learning this new trick, he forgot something important to him that he once knew, so he melts down. These meltdowns are the tower shaking, that heartbreaking, breathtaking moment when you know it’s about to fall, and you panic. Do you try to fix it? Do you let it fall? Or do you sit there and watch as the tower shakes and leans?

Then, after he’s learned so many new things and forgotten so much old information, he can plateau or appear to stop learning anything. This is like the time when the tower falls. You see, all that information has fallen away from him, and he has to shut the world out. Then, he can relearn the things he needs to know in his own time and rebuild his tower, and then the game starts over again.

This may or may not be true for you, but this analogy helped my friends to understand so much more about what it is my son goes through on a regular basis. I only hope this helps someone else to understand as well.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

TOPICS
,
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

Erin with her book, 'I Have Asperger's'

Why I Write as a Person on the Autism Spectrum

Growing up, I was always writing little poems or stories and even some songs. They weren’t always the best, but I enjoyed it. Writing was fun. It continued to be a creative outlet until one year in high school. I was still undiagnosed as on the autism spectrum, but the teachers and staff were aware [...]
Kathy Hooven’s son, Ryan.

When My Son With Autism Said, ‘I’m Not Very Good With Words’

My son Ryan is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain. These files of his seem to be scattered in no particular order, which makes retrieving the information within the files an arduous task. More often than not, he gives up, but [...]
Cathy B. with her son, Dominic.

3 Words That Helped Me When I Thought I Let My Son With Autism Down

I got lost heading back home from a meeting recently. It would have been fine, except I had to be home to meet my son Dominic when the school bus dropped him off. I thought about calling my husband, the bus company or one of my friends to help me, but in my mind I [...]
a woman with her doctor and two other members of her medical team

What I Want My Doctors to Know as Someone on the Autism Spectrum

Dear doctors and medical professionals, There are some things I wish you knew. I have autism. This can make some things more difficult for me. Change, waiting and communicating can be difficult — just to name a few. The medical setting can be intimidating for anyone, but as an individual with autism, I might find it [...]