What is Classic Autism?
By the time my son Jack was about a year old, he demonstrated many of autism’s classic symptoms. And by classic, I mean the ones you read about on the websites and in the articles and all the medical pamphlets.
Limited eye contact.
No babbling, no cooing, or pointing.
Lack of joint attention.
Avoids or resists physical contact.
Yet there was another quality to him that I could not put my finger on, and I certainly couldn’t find on a website. He had a vacancy—almost a ghostliness—about him that alarmed me. He was nearly ethereal in the way he wandered around the house like a shadow, silent except for his ear-splitting tantrums.
We lived in a little brick colonial at the time, and we had the cutest kitchen with a small eating area off the back that was just big enough for our round oak table and four chairs. Every night we sat down for dinner—me, my husband Joe, 2-year old Joey and 1-year old Jack—and Joe would play a game with Jack to try to get him to guess who we each were.
“Jack! Look! This is Mommy! Do you see Mommy? Look at Mommy!”
I hated that game. I hated the way Joe poked his finger on top of my head and I hated watching Jack stare blankly at his plate or the ceiling or out the window—anywhere but at us.
I hated it because it reminded me—every night at my own dinner table, it reminded me—of my own child’s deep disconnect to me, to his brother, his father, and the world.
To Jack, we were less like his family and more like tools; a set of walking and talking hands that could pour him milk and turn on the television and push play to start his beloved Baby Einstein videos.
And then one day, he figured out how to open the milk himself. He learned how to work the remote control, and in the blink of an eye, he was tall enough to jam the slim silver disc into the player.
He needed us less and less, so he came to us less and less. Just like the old cliché, Jack marched to the beat of his own drum, and he marched alone. It was depressing.
Now he’s a great big 11-year old, and he still has a lot of autism’s classic characteristics.
Limited eye contact.
Perseverative behavior.
Self stimulation.
Delayed expressive language.
And he still has the same ghostliness, almost like he’s going through the motions but isn’t quite here with us. He recedes to the corners of the house any chance he gets.
Jack! Where are you?
Where’s Jack?
Has anyone seen Jack?
Friendships seem meaningless.
He never says I love you.
He sits woodenly in church, at the dinner table, on the couch during family movie night.
He doesn’t need us.
It’s still depressing. We can remind him to look in our eyes and we can show him how to work the washing machine, and, the good Lord willing, someone can teach him how many cubes it takes to build a staircase with eleven steps if you need three cubes to build one step, but I don’t know if we can teach him how to love, or how to connect, or to be part of a family.
The other day I was cleaning up some stuff on my computer and I discovered a file called Cariello 2015.
To be honest, I cannot stand when my kids go my computer. It makes me crazy. I just switched to a Mac a few months ago and it took me long enough to get the settings the way I like them without the kids doinking around and messing it all up.
So, I was less than enthused to find some weird file I didn’t create in a program I never use. I clicked on it, tense and annoyed.
It was a movie Jack had made by going through the zillions of video clips and pictures I have stored on the computer. It took my breath away. It was like watching someone reach through an open window and whisper hello.
Hello, I am here. I have been here all along.
It’s our world through his eyes, an untold story of quiet connection and askance glances, pancakes at the kitchen counter and rainbows stretching across a wide blue sky.
It is a four-minute and fifty-four second celebration of family, and faith, and bright, sparkling friendship.
It is a tiny, moon-shaped sliver of hope for anybody who is living alongside of a shadow right this very minute.
It is climbing a long, steep staircase one step at a time until, over a decade later, I at last reached the top. And standing there with both feet planted on the final step, I could see for the first time a most brilliant truth.
There is no such thing as classic autism.
“Jack, look here. Look at Mommy.”
“Jack this is Joey. He is your brother. Your brother, Joey.”
Look at me, buddy. Look at me, look at Daddy. I am your daddy.”
He chose the music.
He chose the pictures.
He chose the order, and the timing, and the ending.
At last, he chose us to be his family.
November 30, 2015 @ 12:06 pm
This is so cool and that video is amazing. Love getting your Monday updates Carrie!
Meg
hellomamas.com
November 30, 2015 @ 12:09 pm
This made me smile! Brought a aww what a sweet thing to do tear to my eye, so I can only imagine how you felt watching it for the first time.
November 30, 2015 @ 12:24 pm
Amazing! We all know they’re in there…its just how and when they tell us! This was absolutely spectacular!
November 30, 2015 @ 12:36 pm
Absolutely wonderful. I overwhelmed with tears and happiness. Your posts are an inspiration for our family.
November 30, 2015 @ 12:39 pm
Bravo!
November 30, 2015 @ 12:40 pm
That is beautiful.
November 30, 2015 @ 12:45 pm
I was so moved by Jack’s video. Thank you for sharing!
November 30, 2015 @ 12:52 pm
I cannot express how much I love this. Bawled my eyes out watching Jack’s video of his wonderful family. Thank you for sharing.
November 30, 2015 @ 1:00 pm
Wow. I had a lump in my throat and years in my eyes when I finished reading your post, but was all smiles when I finished watching the video.
Please tell Jack that I loved how the transitions/zoom effects really fit each image. I could tell he worked hard on it.
November 30, 2015 @ 1:08 pm
Jack, that is such a beautiful video. Xxx
November 30, 2015 @ 1:37 pm
God bless him!
November 30, 2015 @ 2:19 pm
This post made me so happy for you. And for Jack too! So so happy.
November 30, 2015 @ 2:41 pm
I love it — so beautiful!
November 30, 2015 @ 3:02 pm
Once again, I didn’t make it through the whole post without tears.
So much of the information that labels of all kinds give us is about symptoms and not about people. If we look only at the symptoms and the deficits we’ll never get to see the loveliness of the whole person who both exists within and also transcends those limitations and categories.
While I have never raised a child with autism, I have raised two sons who have encountered their own difficulties and have solved them in their own ways and grown up to be their own unique selves, not anybody I could have predicted they would be. This, despite times when I could only see their deficits and my own.
I think that is why I so enjoy “visiting” your family every week. It’s because I get a peek at the process of nurture in a very real and lovely way. It is that nurture of your whole family that is helping all your children (and you) develop into their very wonderful individual selves.
November 30, 2015 @ 3:12 pm
Great video, Jack! You are amazing. What a terrific family you have, too. I’m sure they are so proud of you! I smiled through the whole thing. This gives me so much hope. Thanks to your mom for sharing it!
November 30, 2015 @ 3:45 pm
That brought tears to my eyes. That song choice… WOW. The deep deep feeling behind the action of putting that ll together…. the quiet way he didn’t announce to you that he had made a video for you to watch, he just let you find it. Wow. He just knows that you will find it, because you’ve never stopped looking for him – and there he is 🙂
November 30, 2015 @ 4:12 pm
This is a beautiful post. I’m so glad for you. I’ve learned from my own child that times I thought he wasn’t tuned in to what was going on, he was really taking in EVERY thing.
May you find more pleasant surprises in the future..
November 30, 2015 @ 4:27 pm
This had to be the best Christmas present ever. Jack, you did an awesome job. Your selection of pictures show us how much you love your family – including your precious dog. And the music? Perfect.
November 30, 2015 @ 4:46 pm
What an awesome video! Jack has his own way of saying “I Love You” to his family. He’s very talented when it comes to technology. I love your blog…. So real and honest.
November 30, 2015 @ 4:49 pm
Sniff sniff…beautiful Jack. I love this so much
November 30, 2015 @ 7:22 pm
Thank you for sharing your family with us !
November 30, 2015 @ 8:19 pm
Your honesty is so appealing, Carrie. I, too, have wondered what my “classically autistic” son is thinking and feeling for 23 years; what his perception of our “family” truly is; if he understands that I am his mother… This has been especially painful for the last eight years since he moved to residential care. I wonder what he remembers of his life at home, if he still longs, as I do, for the moments we shared. While my son isn’t capable (yet? that I know of?) of creating a film like Jack’s, nonetheless it gives me hope that he understands and feels more, so much more, than he is capable of expressing, or that I am capable of recognizing. Thank you for sharing this personal chapter in your journey.
November 30, 2015 @ 8:52 pm
Awwww….what a wonderful way for Jack to show his love to you. He might not say it often, but, his love shines through in this.
I can only imagine how you felt when discovering this.
Thanks for sharing.
November 30, 2015 @ 11:37 pm
My glimpses are few and far between. They are oh so precious…yet bittersweet as I wish I could recreate those glimpses again. Your blog hits home.
December 1, 2015 @ 2:22 am
I can’t even begin to imagine how that video made you feel! I noticed that jack was smiling, a lot. I noticed his dad and his sister was featured the most, except for the dog. I think you won’t mind jack messing around with your computer so much!! That was an absolutely wonderful communication from somebody that struggles to show the world how he feels!
December 1, 2015 @ 1:14 pm
I just subscribed to your blog a few weeks ago as my son was recently diagnosed with ASD. So even though I really don’t know you or your family too well, this just makes me feel so so happy for you all. What a beautiful gift, given at a very unsuspecting moment, too. Thank you for sharing.
December 1, 2015 @ 10:21 pm
What a beautiful video he made for his family. There are so many ways to say I love you, I need you. My daughter finally hugged me for the first time on her birthday this year. She turned 23. It was wonderful.
December 2, 2015 @ 5:06 pm
Wow. Impressive. You have a very talented boy.
I understand your frustration Carrie when your son is not responding to you and keeping to himself. I spent years driving my son to piano lessons, swim team practice, Boy scouts, Taekwondo, track, and voice lessons so that he would interact with others. It worked. Now he is a well adjusted member of society. Yes. He still likes to spend endless hours in his room on the computer by himself. I can’t manage his life now that he is 23. I have to trust that he will make his way in this world.
In time your son will develop relationships with other kids like him and they will become life long friends.
My advice. Take care of YOU. What hobbies do you have besides being an incredible writer? Garden, hike or do whatever it is that brightens your day. Your son Jack will be okay. He may even be a professional movie editor someday…
Hugs~
Teri:)
December 2, 2015 @ 6:56 pm
What a gift. I am so happy for you. Jack is an incredible boy.
December 2, 2015 @ 8:01 pm
That was so beautiful! Jack is such an amazing teacher for us all?
December 3, 2015 @ 10:28 am
Carrie,
Thank you for sharing your beautiful gift with the rest of us. I’m so glad you made it to the top step; way to go momma and Jack! I look forward to your weekly posts; it’s so nice to know that there is a village of us “autism momma’s!”
February 2, 2016 @ 11:06 pm
What a wonderful way for Jack to find his voice, his words, and show his love! This may be an avenue for him to really communicate comfortably.
April 14, 2017 @ 11:15 am
Thank you so much for the beautiful words and video. I can’t stop my tears falling. In their hearts, they understand everything. They are just not good at expression.