The Fight for an Answer: A Journey to Our Daughter’s Autism Diagnosis

When no one will listen, do you give up or speak more loudly?

Our pediatrician was nice enough. She kept us current on vaccinations, made sure the girls’ eyes were tested, and usually squeezed us in for an appointment when another ear infection cropped up. But an advocate? A detective? A physician who respected my mother’s intuition? No, she was none of those things.

I had so many questions about my oldest daughter. I watched other children her age, and I knew.. I just KNEW… that she was different. Sometimes, the differences were obvious. Finley walked on her toes. All the time. As a toddler, she could physically stand flat-footed, but she rarely ever did. And as she grew up, she stood higher and higher on her toes until her muscles and ligaments were so tight, she could not place her heel on the floor without grimacing.

“A future ballerina!” folks would say to me. I’d smile kindly while feeling a growing sense of unease deep in my belly.

Other differences were harder for the outside observer to see. Finley spoke in small yet complete sentences at the very young age of one. When she hurt herself as a toddler, she never took to my natural inclination to hold her close and soothe her. Instead, Finn required an external distraction to help her forget the pain. Squirrels outside the window — not hugs — helped to calm her down.

When Finley was about five-years-old, I asked our pediatrician for a referral. I wanted my daughter to see a pediatric orthopedist. I wanted an “expert” to look at Finn’s feet and legs and help us understand what could be done for her. What should be done for her?

The first orthopedic surgeon we saw was a very well-respected man. He’d been working at Shriners Children’s Hospital for decades and had seen far more serious and devastating cases than my toe-walking daughter. I trusted this physician, but I didn’t like him. He would only speak to my husband, even when we were both in the exam room. He’d look at Jason and jokingly say, “Your wife sure asks a lot of questions!” I could feel Jason staring at me while I snapped back with my own sharp retort.

But I felt we needed this man, so while I dreaded his sexist, good ol’ boy approach, I clung to his promises that Finley would outgrow her toe-walking. He assured us that Finley did not have cerebral palsy or autism — frequent causes of toe walking — and I needed to believe his words.

Years passed. The orthopedic surgeon finally retired. Finley grew older, staying on her toes and adding a host of other behaviors that both frustrated us and mystified us. She had massive meltdowns that left us all sweaty and exhausted. She couldn’t (wouldn’t?) fully potty train despite years of programs and Pull-Ups, bribes and promises, steely patience, and screaming matches. She taught herself how to read while she was only in kindergarten but would write her own words in a perfect mirror image. She made friends but often overwhelmed them with her need to control how they played.

Over a period of many years, we saw more specialists than I can remember.

The pediatric urologist and the pediatric GI.

The pediatric physiatrist and pediatric neurologist.

The developmental pediatrician and the pediatric social worker.

The pediatric OT and the cranial sacral therapist.

I may have seemed nuts to an outside observer, driving my child from one specialist to another. But I didn’t care. I knew there was something at the core of Finley’s emotional, physical, and mental attributes. I’d tell anyone who would listen:

“I know there is some common thread that is running through all of these unique qualities.. something that ties the toe walking to the encopresis and the meltdowns to the advanced reading skills.”

But not one single doctor nor one single therapist, nor one single specialist seriously entertained my theory. Not one.

Finley had a full spine MRI under full sedation (no tethered cord syndrome).

When Finley was six, we completed pages upon pages of paperwork and hours of in-person examinations that showed she was “on the line” between “ADHD and no ADHD, autism and no autism.” When that doctor didn’t feel anything was conclusive enough, so on we went with no diagnosis, no medication, no recommendations on what to do next.

As the years wore on, she bravely endured “serial casting” on both legs in an attempt to stretch her muscles and ligaments (that was a long 4+ weeks with no significant improvement).

At the age of 8, Finn had surgery to lengthen both Achilles's tendons — she could no longer physically place her feet flat on the floor, and the bones in her feet were starting to malformed from carrying all of her weight on her ten toes. An unknown allergy to the pre-op antiseptic wash sent us back to the hospital, where her casted legs and feet were covered in red, oozing blisters.

For years, Finn was poked and prodded. Jason and I answered questions and were sometimes made to feel small, perhaps even to blame. But at no point did we find someone who connected the dots. Someone who stepped outside his or her “specialty box” to see the larger possibilities.

I often sobbed to my husband, exhausted by the years of “knowing” and pushing and advocating…only to be left with the same unanswered questions as before. I sarcastically referred to myself as “Finley’s case manager.” Our pediatrician never hesitated to make the referrals I requested, but she also never suggested them herself. I was clearly the driver all along despite surrounding myself with dozens of providers who technically knew so much more than I did.

When Finley was nine, I fought to have her seen by a child psychologist. By then, Finley was still not potty trained. She still struggled to control her emotions and was awkwardly walking flat-footed after surgery and months of physical therapy. I was told that this psychologist couldn’t see my child. “You don’t have a PCP in the group,” they explained. I made calls and called in favors. I used “who I knew” to get what my daughter needed. Thankfully, I worked in the healthcare system, and I knew how to make the system work for me. I tried following the rules, but when that didn’t work, I worked around the rules.

Ultimately, the psychologist’s evaluation of Finley led to a diagnosis of ADHD and high functioning autism. Through heavy tears, I remember thinking that I had been right all along. There really was a common thread that wove all of her challenges together.

I remember feeling validated and overwhelmed, relieved to have a diagnosis yet daunted by what we now knew.

What would come next? Time would tell, of course. But what I knew for sure was that I needed to place my trust and confidence in myself. The journey we had traveled over the past nine years was mapped largely by Jason and me. I was exhausted from running for so long, yet the true marathon was only beginning.

Being an advocate for Finley.

Listening to my gut and speaking up.

Not allowing “experts” to disregard me as simply a “worried mom.”

Knowing I knew something that others did not yet know.

I feel more tired of having earned this knowledge. Yet, I also feel far wiser. These nuggets I’ve picked up along the way hopefully will stay with me and propel me forward. Pushing me along when fatigue and frustration weigh heavy upon me.

I know I can do this. I have already done this.