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To the Teachers Who Question Where My Son's Autism Begins and Ends

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To my son’s teachers,

I was there once. In your seat.

OK fine, maybe it wasn’t your actual seat, at your actual desk and I didn’t have a sea of faces staring at me waiting to learn. But, I still know what it feels like to sit in that seat to wonder… to question… to not understand. And although you may have hundreds of faces watching and waiting for you to figure them out, there is one face in your class that is familiar to me and I have had that same face looking at me waiting, too. Waiting and expecting you to get it — to get him.

There was a time when, perhaps like you, I didn’t understand autism. A time when I didn’t understand how autism impacted my son in ways that seemed questionable. Does his new winter coat really “hurt” because of his sensory struggles or does he just not want to go outside? He can recite an entire movie, yet, he can’t tell me about his day, so is finding his words really that difficult or does he just want to watch Spongebob instead? Are changes in routine really that hard and he can’t bear the thought of going to grandma’s on a weekday because we only ever go there on weekends, or does he just not want to give up Minecraft this afternoon?

Is it all really autism?

I questioned, perhaps just like you. I was ignorant and as his mother, it’s shameful to admit, but at times I was a doubter. Maybe you haven’t said it, but perhaps you have thought it. In fact, I was so skeptical at times that I used to ask the therapists, “How do I know where autism ends and his stubbornness begins?” The answer: you don’t.

There is no way to tell where my son’s autism begins and ends. Autism is not a continuous line with a start point and a stop point that allows you to see where it ends and where other traits — traits that may seem like stubbornness, laziness, carelessness, or even rudeness — begin. Autism is intertwined in all of who he is and all of what he does. It does not define him, but it is a part of him and there is no “on” or “off” switch. There is no way to really understand why one day he seems “checked in” and other days he seems “checked out” and because of that, my son wears a cloak of competence over the five Hollister shirts he wears every week. That cloak can be suffocating to him and confusing to you.

How can he do a task one day and not the next? I mean, if he can read this book and write this essay, why can’t he read that book and write that essay? If he can spend hours focusing on Minecraft, but can’t pay attention to your lecture on the Civil War for five minutes, is that autism or is he just apathetic? If he is mumbling or scripting softly to himself, is his sensory system overloaded because the kid next to him wore too much cologne that day or because he doesn’t give a damn about finding the area of a quadrilateral? If I had the answer, I would be rich; my kid, and kids like him, wouldn’t struggle and you wouldn’t need to open a bottle of wine at the end of the school day.

Bottom line is, I have to trust him. I have to believe him and I try not to doubt him because he is autistic and I’m not.

I will never know why things that were easy yesterday are hard today. Could it be the new socks he is wearing? Could it be the smell of the new floor polish the custodian used last night? Could it be your vibrant patterned shirt that is distracting him? Could it be the two hour delay that changed the schedule or the fire drill that disrupted his work? I don’t know, and honestly, he might not know either. But because of that cloak of competence, it might lead you to wonder… is it all really autism?

Don’t get me wrong, I have no doubt there are times throwing out “The A Word” might benefit him, might help him take the easy path because honestly, who among us doesn’t want easy the majority of the time? But just like I have not really sat in your seat, you haven’t sat in his. And neither have I.

We have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not.

Many autistics do not approve of the puzzle piece as the logo for autism because they do not believe there is anything missing or puzzling about them. The logo was created by neurotypicals for neurotypicals. If you ask most people with autism, they think we are the mystery. And autistic students probably don’t care if you figure out autism, they just want you to figure them out. A task that is easier said than done with a sea of faces waiting for you to get each and every one of them.

I don’t have the answers for you. Sorry. My kid might though. Rather than ask why he didn’t complete the assignment, ask what he might need to help him complete it. Rather than assume he is being lazy, ask if he didn’t understand the homework or did he just get sucked into killing more creepers in Minecraft and forgot to do it. You might get a straight answer, you might not. But if you ask, in the sea of faces staring at you for 52 minutes, there is one face that is grateful you tried to really genuinely see him.

I was there once, in your seat, and some days, I still am. I empathize with you, I legitimately do. So, scooch over and let me sit down. Maybe between my son, you and me, we can “get” him together. But we have to trust him, we have to believe him and we must try not to doubt him, because he is autistic and we are not.

As his mom, I am always here to help him and you. So please, don’t ever hesitate to ask me how to get from there to here, or invite me over when you do open that bottle of wine.

Thanks for listening, thanks for trying, thanks for teaching.

Ryan’s Mom.

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Editor’s note: This story has been published with permission from the author’s son.

Originally published: February 28, 2018
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