This is How Autism Works
When I was in college, I read Dante’s Inferno about the journey through nine different circles of hell.
I loved the book, but thinking about it now—twenty years and five kids and one marriage later—I can’t help but wonder if maybe there should be a special circle, devoted to all the autism moms and dads and caregivers and grandparents.
In this section of the inferno, we would huddle together, subject to the spectrum disorder’s erratic mercy.
The only reading material would be long, complicated IEP forms, and catalogs featuring pullout couches and futons for the child who never moves out of the house.
This lovely daybed comes in plaid or microfiber, and it barely takes up any space at all!
Invitations to birthday parties and play dates would drift past, just out of our reach.
The lights would stay dim, and Elmo’s giggle would play on a continuous loop all day long.
All the melatonin bottles would be empty, and all the pharmacies close at noon.
Minecraft. Lots and lots of Minecraft.
I mean, know that autism isn’t all bad, but there are certainly some parts that are a little more, let’s say, hellish, than others.
You know, like the time I was sitting at a basketball game watching one of my kids play, and the person next to me on the bleachers looked over at my son Jack as he stimmed and jumped with a shrewd, unforgiving eye, and then turned back to me and suggested with a shrug that maybe I should try starting him on a gluten-free diet, because, you know, “Kids like that can have all sorts of problems.”
And then I texted my sister to complain about this person and when I wasn’t looking, Jack stole my phone out of my purse to download a Justin Bieber song, and he read my message and shouted, “Why did you text Aunt Sarah that you are sitting next to a fatuous a$$hole? What is a fat-ew-ous a$$hole anyway. That is a swear.”
That, ladies and gentlemen, is the autism circle of hell.
Hell is a sold-out Disney movie.
Hell is an hour wait at a restaurant.
Hell is a traffic detour, a line for Redbox, and static on the radio.
For me, at this moment, hell is sixth grade.
It’s walking as fast as I could down the long hallways of the school last week, because Jack had a meltdown over computer time.
Hell is last Sunday morning, when I told him he had to write a letter telling his teacher he was sorry, or he could not go to see Kung Fu Panda 3 with the rest of his brothers and his one sister.
Hell is watching Jack’s inner torment all afternoon long, knowing what he has to do and weighing it against what he wants to do and not knowing at all what to do.
“No sorry, I will not say sorry. No sorry.”
Then there were his heartbreakingly childish attempts to get his own way.
“The movie. When I go. Should I get some popcorn?”
“Jack. If you don’t write the note, you can’t go to the movie.”
Hell is the quietly ticking clock, and the blank piece of paper, and the realization that we were not going to change our minds.
“I am going I am going I am going let me go please I have to see it to see it to see it.”
Hell is watching him shove his feet into his boots and scramble for his coat.
“Jack. You can’t go.”
Hell is when my oldest son quietly offers to miss the movie and stay with his wild-eyed brother.
“Mom, let me stay. I can keep him calm.”
Hell is listening to my daughter promise him she can help.
“Jackie, I want you to go. Let me help you write the letter so you can see it with us.”
Hell is having to hold him back while the other kids climbed quietly into the car.
Hell is watching through the window as my husband’s black Toyota Sequoia drove down the driveway, and knowing I am alone with this boy and his rage and my stupid self-imposed consequences.
It’s turning back from the window and squaring off with my son as though we were two tigers in a cage fighting over the same piece of meat—only instead of meat were fighting over something much less tangible; something that is light and wispy and invisible.
An apology.
Hell is setting the house alarm so I will hear him if he unlocks the door and runs away.
Hell is his never-ending pain, and hearing him scream he hates his life.
He hates me. He hates himself.
Hell is knowing that when the rest of my family returns—buoyant and relaxed and smelling like buttery popcorn from an afternoon at the movies, I will have nothing left to give my husband-boy-boy-girl-boy. I will be a shell of a person.
Hell is watching the complete and utter disconnect between cause and effect, behavior and consequence in Jack’s unusual mind. It’s worrying that maybe, just maybe, something is fundamentally wrong that he cannot feel remorse, or regret, or at least just scrawl some kind of fib on a piece of paper and end this tirade already.
And after approximately three hours, twelve minutes, and twenty-nine seconds, he began to wind down, like a toy whose batteries are losing power.
He dragged himself to his room, and closed all the blinds, creating a cocoon. I followed him slowly, afraid even my footsteps would reignite his fury.
I walked in behind him, and drew closer to the deep, dark center of the tenth circle.
I curled my body behind my tall boy as he sobbed in his bed, listening to him chant movie movie movie, and wondering what the f&$# I am doing.
Too often, I have no idea what I am doing, and it is like living inside of Dante’s Inferno every single day.
I stroked his sweaty head and matched his breath with mine, in and out and in and out, until we breathed deep white clouds of air together in tandem, and I asked myself, is this worth it?
Lying there, on the bottom bunk in the dark room, I wondered, what is this costing him, me, us? Perhaps something irreparable, irretrievable, irreplaceable—like a diamond ring slipping down the drain of a sink.
Yet on the other side of night is day, winter is summer, hell is heaven.
And if hell is darkness, then heaven is a shining, redeemable light.
“Jack,” I whispered into the top of his head. “I have an idea.”
So we got up from the bed, and as we walked back downstairs he clutched my right hand with both us his as though I was saving him from drowning.
“Stand behind me while I sit at my computer,” I told him. “I will type whatever you want to say.”
“No!” He snatched a piece of paper from a pile on my desk. “Here. I will write.”
I watched him scribble for a moment. He handed me the paper.
And even though daylight had long since drained from the afternoon, the room filled with sun.
It wasn’t because he doesn’t feel remorse or he doesn’t care about his behavior or he doesn’t understand consequences.
It was because he was scared he would break; the memory of it all was so painful, so shameful and scary and uncomfortable, that he couldn’t bring himself to visit the corner of his mind where it sat, tucked away safely.
“I am for. Too embarrassed for the sorry.”
(Note: I never, ever take pictures of Jack when he’s distraught, but his vulnerability and heartbreak were so poignant that I used my phone to capture them.
And when I one day look back on this terrible afternoon, and time has softened the edges and dulled the noise in a way only time can do, I want to remember how a small whitish-tannish-grayish dog never once left my son’s side—how over and over again, Wolfie drew Jack away from the flames and back into the light.
I showed this picture to Jack and he looked at it quietly for a minute. I asked him if I could use it for the blog, if I could show people how hard he worked, and he nodded his head yes.
I asked him what we should title it, and he said, “My Baddest Day.”
As he walked out the door, he turned back and said, “No. Say it is called. This is How Autism Works.”)
February 8, 2016 @ 11:11 am
This breaks my heart. Thank you and thank you, Jack, for letting me know more than I knew before, by seeing this photo and hearing this story.
February 8, 2016 @ 11:26 am
I so enjoy your blog Carrie. You have enlightened me. My heart aches for you, Jack a boo & your family. Hugs & prayers.
February 8, 2016 @ 11:36 am
Again this week I feel your pain as I too have gone through Autism Hell. We had to leave Christmas Eve family festivities this year early (My 17 y.o son Justin had just started his seizure med & it made him aggressive & my extended family decided to “Change it up” this year & have it somewhere that wasn’t Grandma’s house. I could see him growing more & more agitated so I chose for us to leave while my husband & older son stayed behind for holiday fun. He broke down in the car screaming etc… I too had to let him scream it out then off to his room in fits of tears-I too laid in bed matching my breathing to calm him. I do find in the quiet moments following a huge meltdown like that we have the best talks & that is something no one else has with him & I feel special. I try to hold onto that & when he looks at me & says “Don’t ever give up on me”, I know I won’t & will continue to push through the gates of Hell.
Hope you have a better week. 🙂
February 8, 2016 @ 11:39 am
Heartbreaking, thank you Jack, Carrie and Wolfie for sharing your story and photo. Xxx
February 8, 2016 @ 11:51 am
I read your blog every week and every week I shed a tear.☺ I too am an “autism mom” and I get it! Our journeys are different, yet in some ways they are quite the same. My son is 6 and I have no clue what the future holds for him, but like you, I’m a fighter for my son. He’s come a very long way, yet I know we have a longer road ahead of us. Thank you for this blog, because I tell my husband every week after reading, “I just love her, her honesty is on point and I finally feel like I don’t have to hide anything and it’s ok to feel the feelings I feel at times.” Anyway, as I wipe my tears today, it’s not because I’m sad for you or anything like that, it’s because Jack is amazing and through this blog I’m able to understand just how my little guy might be feeling at times. Will you please tell Jack “thank you” and that I love reading all about him. Thank you Carrie, you truly help me! Have a great day!
February 8, 2016 @ 12:34 pm
Oh, sweet boy. What a good Mom you have. Thank you for sharing. xo
February 8, 2016 @ 3:36 pm
I know these moments well.
February 8, 2016 @ 7:11 pm
Thank you for sharing ‘My Baddest Day’ with us. My 10 year old son and I often read sections of your blog posts together. This time, he was so moved by Jack’s very sad day that he began to cry as I read your words out loud. You see, he remembers feeling all of those things that you describe so beautifully and vividly. He had his own ‘My Baddest Day’ that carried on for several years, and we talk about it sometimes. But this evening he heard it from a mother’s perspective, which was equally heartbreaking for him. My boy, who comes last in every race, and writes in the scrawly print of a much younger child, said a beautiful prayer for you and Jack. And I said an additional prayer of thanks, that my boy is able to express, (in words), his empathy for you borh. We wish for your ‘baddest days’ to finish, and hope it will be soon. Xx
February 8, 2016 @ 10:34 pm
I think there must be thousands of moms that feel like you must be living in their head with your posts. You are so honest and forthright with your life and feelings. I am a caregiver for a 12 year old autistic boy and share many of the same as well.
I hope you have a better week and Jack doesn’t have another “bad” day like that for a long time.
God Bless
February 9, 2016 @ 8:03 am
I’m glad Jack was able to tell you the real reason he didn’t want to write the letter and that he understood the reason. This broke my heart.
February 9, 2016 @ 2:51 pm
I love that Jack read your text out loud,,, you must laugh about that one! and Wolfie a gem a true gem. I am so glad jack has a best friend!!
It warms my heart that your son and daughter were so empathetic… offering to stay home with Jack… and your daughter trying to help. That makes for a truly special family.
February 9, 2016 @ 4:02 pm
Bless you Carrie and much hope I send you for the future. I am the mother of a 27 year old with Asberger’s who can so identify with what you are going through. I to fought the “Middle school “battle as I liked to call it. It was hell and like you I have been to hell and back. But Life is good now and my boy drives now and has graduated from college. Although he is having a hard time finding employment (no surprise there) we keep moving forward into the light – where all hope is. It does get easier and calmer Carrie, trust me, it does. These days will be forgotten and replaced with new and brighter days and you will forget the days in Hell. Trust me Carrie, you will.
February 9, 2016 @ 5:22 pm
Carrie, I often cry at your posts. People have been telling me for years that I should write a book, but I simply cannot find the time and energy. Reliving some parts of our life to share them with others is exhausting – nearly as exhausting as living them in the first place. In a way, you are telling our story. Except I was never as tuned in to my older son’s feelings as you are to Jack’s. We hunkered down and survived the bad days, but I never tried to understand the “why” of it. You are an inspiration!
I would dare to disagree with a previous poster. You will not forget the days in Hell. Over time, their grip on your emotions will fade, but you will always remember them. I don’t believe that God wastes suffering, and if anyone suffers, it is an autism parent. I use my past experiences, my suffering, to help other families cope with their own autism journeys. No two experiences are exactly alike, but most have some common threads. As a parent with 2 Aspies, one 24, the other 15, I cannot sit by and watch another family flounder the way we did. You, too, use your suffering. You share it in the moment. You let other families know that the things they are experiencing are normal, at least as normal as autism allows. It’s ok to have feelings. It’s ok to make mistakes. Trial and error is sometimes all we have, and a lot of the time it’s way more error. You say all of these things and more each week as you share Jack’s and your story. Hold on, Carrie. It gets easier. There will be more light days in the future. God bless you as you share your life with all of us.
February 10, 2016 @ 12:14 am
OMG, you’ve written from my soul. Right down to the dog by a different name. I am in tears right now, but so grateful to know that SOMEONE hears my thoughts and understands.
Having a child like my 11-year-old son (I have never met you or Jack, but from your writings it seems like he and my son are somehow long lost twins) is joyous and hard in so many ways, but one way that doesn’t get talked about often is figuring out what level of expectation to have. Just like with ‘neurotypical’ kids, we, as parents, have to figure out how to be flexible and not expect too much, but also set expectations beyond them for them to reach for and grow into. But how do you figure out what level of expectation to use when you’re dealing with wants, desires, actions, and needs of an 11-year-old while your child is still reasoning and processing emotions as a three-year-old? Just like with the siblings when they test your limits you think, how much will I pay for caving just this once? But you know that to a child with perfect recall, caving once means a new, undeniable human right (the one time though that we’re glad that they aren’t terribly good at generalization).
I have to say what really made me start to cry was when Jack said that he was too embarrassed to say he was sorry. I know that sigh of relief, knowing that you’re headed back into the light. You’re exhausted and know you’ll feel like you have a hangover for probably the next two days (ah, the mletdown hangover). But in that moment you also feel victorious and proud. Not because you lasted it out or won by holding your ground, but because he was able to figure it out and express it all on his own. You feel victorious because he was victorious (although victory certainly doesnt feel all that great for either of you after a meltdown). He IS reaching and growing into needed expectations just like the other kids. And tomorrow is a new day. Because this is how Autism works.
February 11, 2016 @ 3:23 pm
Wow. This beautiful! We have recently endured 6 meltdowns in the past two weeks, and you capture exactly the torment. It is just heartbreaking and I am so relieved to know I am not alone. Thank you for taking the time to write and express what so many of us cannot find the time to do.
February 15, 2016 @ 6:34 pm
You, your Jack, his siblings, your husband, and Wolfie are simply amazing. Truly.