Thank You for the Autism

Rebecca de Winter

The General Intellectual Ability (GIA) score of the Woodcock-Johnson-IV Tests of Cognitive Abilities is a measure of overall intellectual functioning. Jake’s score on this scale falls in the very low range of ability for his age (GIA=49). His score is in the <.1 percentile, meaning that when compared to 100 children his age, Jake scored equal to or higher than <.1% of them. The relative proficiency index (17/90) indicates that when average peers are having 90% success, Jake is likely to have 17% success.

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I was sitting in a conference room at a large table, surrounded by school administrators, educators, a speech therapist, a school psychologist, and my beloved 16-year-old son, Jake, who happens to have autism. While the adults in the room blandly discussed his most recent evaluation, he (wisely, in my estimation) tuned us out, hunched over his place at the table with his ever-present bag of Prismacolor pencils and sketch-pad.

As we slowly, methodically went through the 26-page report – which covered his cognitive functioning, pragmatic language ability, adaptive behavior and social skills, among other things – I found it hard to focus; my mind clicking like an old-fashioned slide projector from memory to memory to memory:

Jake – 6 months old – round and rosy, chubby cheeks, fuzzy blonde hair and bright blue eyes, smiling, babbling, the sweetest baby on the block.

Jake – Age 2 – curled in a corner in a fetal position, staring blankly, trance-like, at the ceiling fan – while I waved my hands frantically in front of his face. He looked right past me, never acknowledging me. I slumped down next to him and fell into a fit of anguish, sobbing, at the realization that my once happy, giggly, precious baby boy had retreated into another dimension. One that even I, who gave birth to him and nursed him and rocked and held him lovingly for so long, could not reach.

Jake – Age 3 – using laminated pictures we had velcroed all over the house to communicate. “Snack.” “Sleep.” “Play outside.” “Potty.” “No.” Blood-curdling screams with no visible cause. Staying up half the night laughing maniacally at the walls, seeing what God can only ever know. Biting his hands bloody from some inner torment we could not guess and could not heal.

Jake – Age 5 – finally verbal, using memorized lines from Winnie-the-Pooh, Thomas the Tank Engine, or snatches of conversation from family or school. “What do you want to eat?” we would ask. “Sirrrrr Topham Hatt” he would respond. But no more screaming. No more self-mutilation. PROGRESS.

Jake – Age 10 – happy, happy, happy. Verbal, loving, affectionate, silly and sweet. Still sleeping with his raggedy, well-loved Winnie-the-Pooh. Reams of white paper, clipboard and pencil bag, drawing page after page of cartoons, trucks and trains.

Jake – Age 16 – easily the most-loved student at his high school. Tall and handsome. Gorgeous blue eyes. Friendly, thoughtful, cheerful – a kind word for every single person he encounters. Gifted artist. Joyfully obsessed with trains and railroad crossing signals. Loves all kinds of music, and loves to dance. Enjoys video games, playing outside, and yes, he still adores Winnie-the-Pooh. He loves cats. Cats love him too; they are drawn to him – this fascinates me….

My mind snaps back to the present, we are on page four of the report, and I’m trying to focus. Something about “Pragmatic Judgment.” I sneak a glance at Jake – still drawing, sketching, coloring – smiling to himself. Good. My heart melts a bit. I relax into my seat.

And then we get to the part of the report I’ve been dreading. The IQ test. I’ll never forget the day, when he was first tested years ago, being told that he was severely mentally retarded. They don’t call it that anymore – it’s not PC, so they say “intellectually disabled,” but we all know what it means. No matter how accepting we try to be, no matter how often we are inspired watching the Special Olympics or YouTube videos of a special needs child given a chance to make a touchdown, no one wants to hear this about their own child. He had already been diagnosed with autism. He had been making such progress. And then this. It was unbearable. Excruciating.

Back to the present – I try to remain calm. I struggle to listen attentively as the diagnostician reads through the categories quickly: Oral Vocabulary – 49, Story Recall – 60….blah blah blah blah blah...and then the final judgment:

General Intellectual Ability: 49

I am looking intently at the page in front of me, pretending to go along with the words being spoken. The voices start muting in my head, and the room around me fades like an opaque watercolor as one line jumps out at me in high relief. I read it over and over and over:

indicates that when average peers are having 90% success, Jake is likely to have 17% success

indicates that when average peers are having 90% success, Jake is likely to have 17% success

​indicates that when average peers are having 90% success, Jake is likely to have 17% success

A wave of anger swells inside of me, forming in my solar plexus and cresting up and over my head. I can feel my face flush, and I hold back the tears beginning to well in my eyes with every ounce of will I can muster. I will not cry here. Not in front of Jake. Although he has tuned us out, one sign of distress from his mother and all bets are off. I hold it together. I have to.

While I understand on a logical, rational level that these words and numbers are simply testing lingo, the mother in me struggles not to interpret it as a damning indictment of my son. Who are these “average peers” and just who in the hell determines that they have such an enormous advantage on “success” over him? Who in God’s name decides what success means anyway?

I scan the notes quickly, looking for answers.

“Comprehension-Knowledge includes the breadth and depth of a person’s acquired knowledge.”

I know and love a lot of smart people. And by smart, I mean incredibly intelligent, highly-educated, with sky-high IQs. The breadth and depth of their acquired knowledge is enormous and impressive. But I would argue that Jake has a breadth and depth of innate happiness and love that is exceptionally rare. One that the average person – intelligent or not – would give almost anything to have. One that few ever reach.

The slide projector clicks through my mind again:

Jake -

• Lovingly cradling the abandoned kitten we rescued, patiently bottle feeding him.
• Taking all of his own Halloween candy up to school the day after trick-or-treating, and happily handing it out to his teachers and fellow students.
• Greeting the mailman, garbage truck driver, cafeteria workers and janitors at his school by name and giving them high-fives.
• Creating unique drawings for people based on what they love most.
• Making me coffee every day and presenting it to me with personalized notes saying things like “I made this coffee for you, mom. I love you. Sincerely, Jake.”
• Taking his little sister an ice-pack when she has a headache and saying “there, there, it will be OK.”
• Sensing when others are sad, and offering a hug.
• Getting off the bus every day and then running full speed up to the front porch to give me a big hug and to say “You look so pretty today, mom.”

By any measure, that’s what I would call success.

The meeting finally wraps up, we all stand up and stretch, goodbyes all around. As we file out of the room, Jake shakes everyone’s hand and says “thank you!”

We passed the school secretary on the way out. “I made this for you,” he said, grinning proudly, handing her the drawing he created while we were in the meeting. The smile on her face made my day. “Jake, thank you! You are just the best,” she said. “Yes, I am the best, and you are the best, too,” he replied matter-of-factly.

About a year ago, Jake’s caseworker, Monique, who makes monthly visits to review his current services, packed up the files in her briefcase and we walked her to the door. Like we always do, we stepped out onto the front porch to wave goodbye. As she turned and waved back, Jake called out “thank you for the autism!”

Monique and I burst out laughing – it was just so...so “Jake.” He was delighted at our laughter and joined in, jumping up and down with joy.

It’s one of the funniest, most poignant memories I’ll ever have of him. And as we walked out the front doors of his school after the meeting, a surge of joy and love and pride coursed through me, and something inside of me said “Yes. Yes. Thank you for the autism.”