My Child’s Late Autism Diagnosis: One Mom’s Story


late autism diagnosis


My daughter has always been quirky, but the last thing we expected before her 12th birthday was a late autism diagnosis.

As a toddler, she was engaging and happy, always smiling, except when we didn’t have her to bed on time. Or tried to take her to busy, noisy places with lots of lights and people. 

Her second birthday party was huge, but halfway through, she was walking around as if in a trance. She wouldn’t look me in the eye when I tried to talk to her. And then she just began crying, inconsolable. 

My dad finally took her back into the bedroom and rocked her in silence for half an hour. After that, she seemed fine. 

When she started school, impulsivity started to become a problem. In preschool, she was The Biter. It took years to train her out of that instantaneous oral response to stress. She was wiggly and fidgety in class, but nothing we didn’t expect. My husband is wiggly and fidgety, and he’s nearly 40. A tad hyperactive, we thought. No big deal. 

In second grade, she began kicking things. Spontaneously, without reason. The chair in front of her. A student walking by. Impulsive! Her teacher advised us to look into ADHD. We did. We tried medication. She responded instantly. 

That’s it! We thought. Just a big hyperactive. And the meds helped enormously. 

But, in fifth grade, things started to go off the rails. Bullying. The kids she’d been in school with for years knew exactly how to get her spun up. A honking blast of the recorder directrly into her ear while the teacher wasn’t looking. A shove with a basketball during PE. She’d explode, and respond impulsively with screaming, shouts or a shove. 

She was the one who was punished for overreacting, not the other kids. Her school administration wanted to talk to us about “behavioral contracts” at that point. After this, we pulled her out of private school. Our cheerful, inquisitive, vibrant daughter had become withdrawn and sullen. 

In sixth grade, we tried a charter school, touted as great for “alternative learners.” We knew she was exceptionally smart, but her grades didn’t demonstrate this. We had such high hopes for the charter school.

I can’t even begin to describe my feelings when, four months later during an IEP meeting the school administration called, her teacher turned to me and said, “She’s just not interested in learning.” 

Six months later, after a lot of tears, trips to the pediatrician, a child psychologist, a gifted learning analysis, and extensive evaluations by the charter school (who declared her ineligible for an IEP), we finally received a diagnosis: Autism Spectrum Disorder. Level 1, Asperger’s Syndrome. 

The pediatric psychiatrist who met with us to review her results said she knew as soon as she walked into the room. We knew it too, the day we sat behind the mirror and watched her interact with one of the therapists. I strained in my chair, watching and listening as the evaluator would say things to her like “I went to Disneyland last weekend.”

My daughter continued to fidget with the objects on the table, and responded “I have six My Little Ponies” and began listing their names. 

The puzzle pieces fell into place then. Inexplicable behaviors now made sense. We began to anticipate times in which she would experience sensory overload and plan around them. I stopped feeling guilty for not enrolling her in more after-school activities. She needed downtime. She needed routine. 

We started, hesitantly at first, to explain her condition to those who needed to know. Her hairstylist, for one. Teachers at church. I even got up the courage to tell a ticketing agent at the gate before a long flight. She immediately offered us the opportunity to pre-board, ahead of the crowd and long lines. It was the most relaxed my daughter has ever been before a flight. It was the most relaxed I have ever been before a flight! Everyone took the information in stride. Understanding begets compassion and support. We now have her in a wonderful public school with an IEP and an exceptional team of adults who are surrounding and supporting her, intently focused on her success both academically and socially. 

But yet, she has a long way to go. It’s painful, at times, to see the accomplishments of other students her age. All we’re really excited about this week is that she managed to get out of bed when her alarm went off, and that hasn’t complained about her socks being too tight. She’s eaten all of her dinner five nights in a row without finding fault in the sauce, the flavor, or the texture. Right now, we are surviving school. Her grades are adequate. She’s passing her classes. Yet thriving seems pretty far out of reach. 

This late autism diagnosis has been hard for me to absorb. What does this mean for her, 10 years from now, or 20? 

The dreams I’ve always cherished for my daughter, are they unattainable now?
Will she be able to survive the intensity of college or graduate school?
With regards to her giftedness in science and math, will she be able to find a career in which she can flourish?
Will she be able to hold down a job? Endure the tensions of deadlines and difficult coworkers?
Can she learn how to simply being on time day in and day out?
What about a relationship and the ability to give and accept affection from another? 

There is so much yet that we do not know. Perhaps what this late autism diagnosis means for a parent is that the future still sits behind a curtain, undetermined and undefined. I cannot anticipate what the future might hold for my child. I simply hope for the best. Her best, her happiness. 

It’s all any parent can do. 



  1. I completely sympathize with you. My son was late Level 1 diagnosed at age 12 also. That was last year (June 2016). Quirky, unfocused, crazy memory of some things and social skills are not so great. Also an underlying medical issue which we assumed was responsible until school just became too tough, he wasnt thriving. Knowing now it seems obvious, but more importantly he is getting the assistants for learning he needs.

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