But She’s So Pretty

By Vicki Koslin Howell

“But she talks so much.” If I had to hear that sentence again from professionals assessing my daughter for autism, I’d explode. The truth is, I never thought I’d have a daughter with autism, even though I’ve spent my life with a going on 31 year old ADHD diagnosis tagged on my forehead. The truth is, I’d have never considered my daughter as autistic, even though I’ve spent hundreds of thousands of dollars on three degrees in special education. The truth is, I’d never considered my daughter as autistic until I did. And by then, I couldn’t unsee it.

I am an Assistant Professor of Special Education. I find my home within the neurodiverse community and I advocate for parents of children with special needs and I consider myself knowledgeable about disabilities. In fact, some consider me an expert. Interestingly enough, the pathway from the moment I knew my daughter was autistic to diagnosis was incredibly difficult. My daughter, born three weeks early feet first into the world, was an early walker and an early talker. In fact, by 13 months, she was using 4-5 word sentences. By 18 months, conjunctions. You can imagine why autism wasn’t on my radar. But when she turned 10 months old, we saw meltdowns instead of tantrums. We saw rigidity to food presentations. We saw dependency on strict routines and structures.

“But, she doesn’t stim!” My daughter doesn’t engage in stereotypy, at least in the ways most people, including me, recognized. She couldn’t be autistic if she didn’t stim, right? That’s what her 1 year old visit with pediatrician left us with as we exited the appointment, begging for an evaluation. We were given a one year away appointment with a developmental pediatrician across the state boarder, so I suppose the appointment went well.

“But she loves to play!” My two year old daughter engaged in social play at the developmental pediatrician’s office. Only though surveys and conversations did the doctor understand the sensory struggles we were seeing. My daughter was always covered, head to toe, in grime and food. We learned she was a sensory seeker, and at times, avoider. In this one hour visit, the pediatrician said she did qualify for a sensory integration disorder, SID, she didn’t qualify for autism at this time.

“But she’s so pretty!” My three year old daughter dazzled the local education agency psychometrist in her initial evaluation reports. In fact, I was already told she was “not autistic” upon meeting her because she came in, twirled her dress, said her name and her favorite color. When the speech therapist returned her to me after evaluating her for twenty minutes, wondering why I was getting her evaluated, I replied that I have concerns about her sensory processing and that she’s presenting on the Spectrum. The speech therapist looked me dead in the face and said, “but she’s so pretty!”. As if it’s common knowledge that beauty and disability are mutually exclusive, making me sick to my stomach.

“But she’s so smart!” At our first evaluation meeting following all of the testing done by our local education agency, they explained to me that she did not qualify for anything. My daughter, three years old, was having such intense meltdowns and elopement from her daycare that I had to invest personally in an aide for her to stay safe. She was banging her head, biting her thighs, fight or flight flailing, and struggling with the sensory inputs of a large classroom. But none of this translated in the 30 minute testing evaluations. They reviewed her speech assessments: high average (they didn’t evaluate her language, though). They reviewed her cognitive skills (in the top 5% of kids her age). They reviewed her ADOS, which gave her a score of a 3 (not likely autistic) in all of 40 minutes. They came up empty. I said, well, can we consider her for Emotional Behavioral Disorder, then? They gasped and said “but she’s so smart! That’s a really harsh label”. Again, the special education advocate in me was vomiting internally at the notion that mutual exclusivity existed with intelligence and disability in the brains of the very people that were trained to help raise children in schools. Not to mention their view on the “label”. I left the meeting, defeated. My daughter was getting sent home daily. Her rough days translated to rough nights. Rough weeks. Constant dysregulation. And we had no help from our local education agency.

“And she’s autistic”. My four year old daughter finally got into our state’s major research institute’s developmental delay evaluation process. She spent four hours with both a psychologist and a neurodevelopmental pediatrician. Four hours. Enough time to see her rigidity and ritualized behaviors. Enough time to see how her beautiful speech left absolute holes in her receptive language and pragmatics. Enough time to see her. My beautiful, smart, girl. They took an hour to explain the results of their very thorough evaluation, culminating in her being smart, beautiful, kind, “and she’s autistic”. Her diagnosis of autism came through seven different measures and an ADOS rating of 7, a far cry from the 3 she was scored in a menial amount of time by a quick school-based evaluation. While this Doctor of Education (Ed.D) in special education’s gut instincts were right, she still learned new things about her daughter then. I learned that all of my daughter’s beautiful, long language was all borrowed from her older sister. That all of her actions were borrowed from TV shows she watched. And that she was a gestalt language processor. In this moment, my vision tunneled, my heart raced, and I had no idea whether to cry tears of gratitude and joy or of recognition.

I left with a folder of resources that help parents of autism in our State. I wish I could say our story got easier. We found a local Occupational Therapist who quite literally changed our worlds. We involved her in her local daycare who brought class wide changes for many students. But…we were denied an IEP again. At this point, it was painfully clear that until she was “their problem,” (e.g. in their local Kindergarten), she wasn’t going to be seen or accepted as disabled. Fast forward a year, we’ve moved cities, gotten new evaluations, a brand new IEP, a beautiful Pre-K inclusion classroom with one teacher and two support personnel, and my girl’s sparkle is at its brightest. Her cognitive skills are skyrocketing because her behaviors and sensory meltdowns are being mediated before fight or flight. Her teacher loves her and knows her and reaches out to me constantly, hearing me and hearing my girl.

How many women with autism have to wait until they’re teenagers or adults to be diagnosed? Science says it’s likely far too many, but the gap is finally closing with research and knowledge of how differently autism can present in different individuals, especially in girls (Grosvenor, Croen, and Lynch, 2024). It took three degrees in special education and years for this mother scholar to be heard, screaming for help. It took privilege of all sorts to get to this diagnosis. For my daughter to be understood. For the world to know my beautiful, smart, autistic daughter. She’s all three. And the fight to get here is something no parent should have to undergo. The fight to get here is far more than most parents are able or empowered to engage in. I’m ready for science to catch up. I’m ready for the world to stop excluding positive words from disabled words. I’m ready to watch my beautiful, smart, autistic daughter change the world, as I cheer on every single part of her.

Vicki Koslin Howell is an Assistant Professor of Special Education at the University of North Alabama. She is a neurodivergent mother of three, including one daughter on the autism spectrum. Vicki has spent 12 years as a public school special educator before moving into the higher education setting, where she largely prepares students to become inclusive teachers. Some of her research interests are the intersectionality of autism and women and transition. Her life’s purpose has been, and will always be, challenging the status quo and creating space for people with disabilities.