When it Comes to Autism, Let’s Stop Pretending
Listen, I don’t want to pretend anymore.
You saw it and I saw it and there it sat, between us, like a giant elephant in the middle of Panera.
You saw him jump around with his fingers in his mouth. You noticed how his fingernails were red and raw.
You saw him talk to himself.
You saw me rest my hands on his shoulders in an attempt to help him be still while he ordered his macaroni and cheese in a bread bowl with a side of bread.
My Jack-a-boo does love his carbs.
Jack-attack.
Jack.
My son is Jack. He is thirteen. He has autism.
I want you to know it’s no big deal. People stare at us all the time, so we’re pretty used to it by now. I mean, I am anyway. I don’t know about him. He’s never said anything about it.
Anyway, you didn’t exactly stare. You studied him for a few long seconds, and then you looked away.
I get it. It’s easier to look quickly and then pretend you didn’t see him at all.
It’s not like I can pretend. I can’t pretend he doesn’t have autism. How could I? How could I pretend like this is all some fake dream and he’s really going to be just fine and our lives will be regular? How can I pretend when I have to give him medicine every night just so he can sleep and I have to make sure he doesn’t wander away in the store or jump out in front of a car in a parking lot?
But the rest of the world does. The rest of the world clears their collective throats and glances down at their hands and looks away from the jumping.
Again, I get it. I really do. I mean, who wants to confront that head-on? Who wants to have the internal conversation about a boy they don’t even know?
What’s up with him?
He talks a little weird.
I wonder why he moves like that.
I don’t blame you, that’s what I’m trying to tell you. I just wish there was a universal sign I could make to let you know he has autism, like if I held up two fingers or maybe scratched the side of my nose.
I know, it’s hard to name and difficult to talk about and there’s no good way to ask the question.
Does he have autism?
Still, there must be something in between downcast eyes and staring. There must be something in the space of wonder and confusion—uncertainty and fascination.
And as far as I know, there is no universal sign, which means I have to try to whisper it really quietly over his head or catch your eye and kind of nod towards him.
He has, uh, autism.
You know, autism?
And if he hears me, then he will start to screech and shout that I am so embarrassing to him and he hates me and it all gets kind of awkward for a little bit.
Do not for. To talk about. My autism.
You see the position I am in, don’t you? Somewhere along the line, my son got the idea that his autism—a phenomenon that we tell him is as much a part of who he is as the freckle on his leg, or his long feet—is wrong.
He feels ashamed of this piece of himself, something that is little more than then a genetic twist of fate. As far as I can tell, it’s no one’s fault, least of all his.
I’m tired of pretending.
I’m tired of pretending that creating awareness is fun and enlightening and interesting and easy.
It’s not easy.
It is not always fun.
Sometimes it’s interesting.
Listen, I have been taking this boy into public for over thirteen years now. We have gone to restaurants and anniversary parties and middle school concerts. Sometimes it goes very, very well, and other times are a little, uh nerve-wracking, like night he screamed at me to shut up while the 5-th grade chorus sang Jingle Bells. But I don’t care. That is the truth. I don’t care what people think or if they stare.
I am kind of hard to embarrass. That’s what I am trying to tell you.
I am not embarrassed of him. Not in the very least.
I love him. I love him so much, you wouldn’t even believe it.
I don’t only love him, I hurt for him. It’s like someone took my heart out of my body, and now it’s walking around, vulnerable and exposed to the world, and I can’t protect it. I can’t say, hey! That’s my heart! Be gentle! Be kind!
Because we’re all just pretending.
We’re pretending we don’t see what’s right in front of us because it’s scary and weird and awkward and real.
See it.
See him.
Know him.
This is my whole life, do you understand? I will spend the rest of my life explaining him to you and you to him. I will explain him to you, a lovely girl with the long dark hair working in Panera, and to your brother and your mother and your cousin and your teacher.
I will explain his rigidity and his anxiety and his habit of covering his ears when he thinks there might be a loud noise.
It’s complicated, this awareness thing. It’s like, I want people to like him for who he is, but understand what he has, and make room for the man we are trying to help him become.
Maybe it’s a smile. The thing between the downturned eyes and the stare. Just a small, simple, easy smile.
It can be enlightening.
Be gentle.
Be kind.
He is my heart, wandering out there, in your world.
Her hair. Was so long.
It sure was, buddy, Here, take your tray, let’s find a seat.
January 22, 2018 @ 11:41 am
It made an enormous difference in our lives when we actively started to help our child develop autistic pride. Her self-esteem was low and she hated being different because there still is a “deficit”-based approach that seems to pervade our educational system as well as the various available therapies.
However, since autism affects the way my child perceives and processes the world every day and since it affects how she interacts with the world around her, autism is an integral part of her, and we had to make sure that we were not inadvertently teaching her to hate autism. Because autism is an integral part if her, hating autism would mean hating a part of herself.
A quick internet search for “autistic pride” shows many places where one could start learning about it. There is an Autistic Pride Day every June 18th, which may be something to show to your child and to observe as a family. Ollibean wrote about autistic pride as did many others, including teenagers on the spectrum who have active blogs that are enlightening and that foster a spirit of community and solidarity. When we started to show our child that there were a lot of people on the spectrum who had learned to value themselves in their entirety, we began to notice a real difference in my child’s self-esteem and self-acceptance. We had spent a lot of time trying to get other folks to accept our child, but really, acceptance has to start with self-acceptance. Fortunately, self-acceptance can be learned.
Finally, on a daily basis, we try to point out something positive that happened because of my child’s different perspective, pattern recognition, etc. At first, we had to train ourselves to look and appreciate the positive amidst those differences that make life harder for my child, but it eventually becomes second nature. Daily criticism, whether direct or indirect criticism, wears down a person’s self-esteem and joy. But daily positive feedback, no matter how minimal it seems, has helped our child smile again and tremendously increased her hope that she, too, will have a life in which she can be happy and respected and filled with joy and self-esteem.
January 22, 2018 @ 11:51 am
Has anyone ever said anything to him or to you, in the middle of an outburst, that has made you guys (any of you in your family) feel more accepted and cherished and welcomed in that moment? Either by people who know you, or by strangers? Cuz if I am next to a person with autism and his/her people at that moment – I would be glad to say anything that salutes that moment as difficult but also normal and human. It’s happened close to me several times in the past year, and all I know how to do is smile a bit. I think of you and Jack every single time and I think of these Monday essays.
January 22, 2018 @ 3:22 pm
Thank you, Mary Beth, for keeping us in your thoughts! I wish I had a good answer…but a small smile never hurts no matter the circumstance. XOXO Carrie
January 22, 2018 @ 8:37 pm
My sentiments exactly, i was a caretaker and feel in love with OUR “GREAT G – Boy”
I was willing to go anywhere with G – Boy because he just wanted to do and go where the activities were happening!
I also work retail and I see a variety of autism, various ages, and All I feel I can do is SMILE (AND Sometimes offer store stickers)
I know that the autism doesn’t effect their desire to LOVE and to be LOVED. To SMILE and to have someone SMILE BACK.
I have yet to find a way to converse. It’s not come naturally, but they ARE willing to converse and sometimes THEIR WORDS are off color, slightly rude (honest ) and a bit confusing.
I want you to know Thoes are the times I wish I could speak, “its OKAY I am NOT OFFENDED!” But I smile,
PLEASE KNOW I AM SMILING BECAUSE I TOTALLY GET THE WORDS, They are JUST WORDS, not meant to hurt, not meant to be mean. Its society that taught them to express their thoughts out loud, because they were allowed to live in a universe that WILL say those things. It’s OKAY, they say what many THINK, But may have a filter,
It’s okay because many will say thoes things because they WANT to shock you!
It’s okay because most of what these children do and say melt your heart.
I Love my G – Boy and I love his family. I love that you express your daily challenges so that G -Boys family and All the other families who have a child “ON THE SPECTRUM” Can feel “it’s OKAY”
I wish there were big get togethers where all families could gather once in a while in a safe environment and just enjoy being themselves!
Thank you Carrie Cariello an G – boys family and my own family who struggles with “THE SPECTRUM”
January 22, 2018 @ 1:15 pm
Carrie, since I work with students in the inclusion program at our high school and have a nephew also “on the spectrum” I am someone who understands when I see the behaviors in other settings. I will try to catch the eye of the parent, nod, smile if possible make a positive comment. Your words here always bring insight and help me understand so I can support our students a bit better each time something new comes up. Thank you.
January 22, 2018 @ 1:16 pm
If I may give you a little insight into what upsets him? Respectfully, because I 100% believe you adore your son, and this isn’t judgemental. But he might be perceiving your explanation as, well, an apology. Like you have to keep explaining it, (why?) and he is just being him, and you keep reminding him that he is different and his everyday normal behavior is ‘wrong’ in the typical world to not only strangers, but yourself. Because you keep saying it.
Just… stop. You don’t owe strangers an explanation. He doesn’t need to be explained, or excused for living.
I wrote about this very thing recently. https://www.specialneedsnashville.com/dont-apologize
I wish you the best.
January 22, 2018 @ 3:22 pm
Thank you for your thoughts, Gaynell. I do understand your perspective – I don’t owe anyone an explanation, this is true. I do think it’s a fine line between awareness and apology and I tread it often. Best, Carrie
January 22, 2018 @ 4:43 pm
I promise to smile kindly at mom (or dad) and child next time I see a child who seems autistic. Thank you for the suggestion.?
February 8, 2018 @ 3:30 am
Being a parent of an autistic son, I can’t tell you how much a smile means and helps us during those tough moments 🙂 You will make such a difference, thank you 🙂
January 22, 2018 @ 8:58 pm
I agree “No need for explainations or apologizes”! All spectrums of Gods Children are unique.
To point out “unique qualities may seem innocent but not to the individuals with these unique features!”
January 24, 2018 @ 10:49 am
Hello. I just stumbled across your blog and have been reading for the past 45 minutes. How I wish I had had access to something like this during my son’s childhood! I would have finally felt like there was someone else who truly understood. Not that our daily lives were identical, my son came with his own unique challenges, but your approach and instincts are very close to my own. For what it’s worth, it sounds like you’re doing a wonderful job! Jack is very lucky to have you!
January 30, 2018 @ 12:42 pm
I’m just reading here for the first time and it really hits home. Thank you for expressing it for the rest of us. Having a daughter who is on the very high-functioning end of the spectrum has made me so much more aware. Last summer our family was on the Pacific coast. Against a rock formation on the beach a middle-aged lady was swaying in a slow dance with what looked like her teenage son. She looked so happy. My reaction was a curious glance, and the thought, “how strange is that?” Later came the realization that I may have witnessed one of those rare moments when the connection really is there. I don’t know what the truth was. But I was shocked at myself that after all the learning I’ve done, that was still my first reaction. I need to be as patient and forgiving of those who don’t understand what we are living with as I want them to be with us. It isn’t easy. Awareness and acceptance can be a long journey.
February 8, 2018 @ 3:35 am
Oh, Carrie, I completely relate! By ‘educating’ those who stare, in front of our son (who scripts), my son often gets upset. So now I will wait until someone asks (which isn’t often). I’ve had a few insensitive folks (some nurses too!) ask me, in FRONT of my son, “what’s wrong with him” to which I reply, “oh, there’s nothing wrong with him at all. He is just not exactly like you, which is always a good thing to be different”. I always praise my son when he says a word, telling him how proud I am of how hard he works to learn. How he never gives up. Yesterday I asked him to be a bit quieter at the dentists rooms (was stimming very loudly), being very aware of how I asked him. He still cried, as if I was asking him to stop being him. It’s such a fine line! P.S. you are a great mom!