Story: Little Girls Don't Get Autism

Editor's Note: This is the first in our series of reader-shared stories. Because this contributor's daughter is a minor she asked to share this story anonymously. 

Girl pictured is not the girl in the story.

Girl pictured is not the girl in the story.

"Little Girls Don't Get Autism."

That's what we heard at my daughter's nine-month checkup, the one where I came in with a list of issues and a manual on autism—the disorder that Dr. Google suggested as a possibility for her odd behavior and lack of social overtures. She was healthy, I was told, so the fact that she didn't smile at nine months was negligible. It was just love when she couldn't bear to be put down or she screamed when her father approached us. I was a silly first-time mother. Maybe I needed antidepressants and a nice dinner out? (Yeah, he went there.) Things needed to change, he suggested, particularly my parenting style (attached and baby-wearing).

You know what changed? Her doctor.

When she was 26 months old, she had a swollen lymph node that formed a hard bump right under her chin. That was actually nothing serious, but the response from the pediatric specialist we saw? Life-changing. In less than a half an hour, we went from "little girls don't have autism" to "not getting your daughter help for her autism ought to be considered child abuse."

Whoa, nelly.

I had to point out that her doctor had said it was impossible, and they asked me what kind of a quack I'd gone to (so I told them). I have no idea if they ever cross-referenced that with the original doctor's office. When we walked into the specialist's, we left the original doctor behind forever. She was diagnosed with PDD-NOS (a catchall diagnosis for autism that gets upgraded when the child's particular issues become apparent) a few weeks later.

But the fun never stops.

At 9, her pediatrician kept thinking she was a boy—he refused to discuss puberty with her and us. He called her 'tiger' and 'sport.' (This isn't too bad, really, but it damaged her self-image, so it counts.) When she did begin to menstruate, he refused to discuss her cycle during her appointments. (I really dislike doctors who can't deal with the whole picture.) Later that year, he diagnosed my daughter with scoliosis. We went to a specialist for a brace.

We didn't get a brace: we got a benign growth inside her femur, a giant eosinophilic granuloma that had been causing her agony that her pediatrician tried to treat with ibuprofen.

Ibuprofen versus a tumor that's destroying a bone.

Ibuprofen as the only thing meant to keep a tall, healthy eleven-year-old girl on both legs when she keeps limping and weeping. This is the kid who stapled her finger and said, "Oh, blood," like it was nothing. And yet, ibuprofen was supposed to be enough to get her through these "growing pains" and then "she'll feel better in a brace."

We made her go to physical therapy with that growth, thinking we could strengthen her core and save her some pain. They had her using an exercise bicycle. They made her run.

I cannot imagine what kind of hell that had to be.

And she smiled the whole way through it. She accepted that she was going to be in pain. Her first reaction (once the Demerol wore off post-surgery—and there were three of those, the orthopedic surgeon thought he was going after a cyst that needed filling) was to ask if it was always going to hurt when she walked.

She runs now. She's got autism and a 13" scar down her thigh, but they don't have her. I have her, and I've learned how precious she is. (So now I advocate. Speak up, everybody.)

Little girls do get autism, and little girls do deserve to have a doctor who treats their whole person—menstruation and all—and little girls deserve imaging before they're sent to "walk it off." Little girls deserve better.

Further Reading:

Chronic Pain Is Overwhelmingly Experienced by Women—So Why Do They Have Trouble Getting Care for It? "Women are less likely to receive narcotic medications and other strong pain management tools when they report issues like post-surgical pain, and this extends even to girls—one study showed that after surgery, boys were more likely to be given codeine, while girls received acetaminophen."