Jacquelyn's Story Part 6: A Final Diagnosis

Written by jenstate

Jacquelyn’s Story is a series of posts about my daughter, who has a neuro-behavioral disorder. To start at the beginning, click here.

As I enjoyed every aspect of Jacquelyn’s more outgoing personality, a friend and fellow special needs mom warned me that Jacquelyn may regress. I was so happy at the end of her first grade year that I refused to acknowledge the fact that our success may be short-lived and that we might need another diagnosis, one that would better explain Jacquelyn’s strange behaviors. I gave in to the idea that all the therapies she had completed had “fixed” her issues and ignored the possibility that they had just reduced the frequency and severity of her symptoms. My wishful thinking came to a screeching halt when she started second grade.

Entering second grade was a huge transition for Jacquelyn. Not only was there no assistant teacher to help when she became overwhelmed, but she also only knew two children in her class. That meant she had to start over by learning the voices, sounds, and movements of 17 new children. That proved disastrous for a child with social anxiety. While she maintained the new motor skills that she gained in occupational therapy, she quickly reverted to the stressed and withdrawn child I knew in Kindergarten.

Autistic-like behaviors once again became Jacquelyn’s new normal. She rocked back and forth on all fours at our local coffee shop. She traced lines on furniture, walls, and floors over and over again. She spoke at one low volume no matter how many times I asked her to speak up. She developed motor tics including facial twitches and head nodding as well as repetitive behaviors like obsessively scratching smooth surfaces and OCD-like hand washing. She stared and “daydreamed” several times a day to escape a world that was constantly overwhelming for her.

One day I asked her some pointed questions about her daydreams, and she described a fairy world to me. She said sometimes her fairy world is easy to access and other times it requires drawing each piece of the world in her mind. She would start with a white screen and a border, and then mentally draw the background and characters until she could fly in as a fairy version of herself. She would then mentally erase the border so that she was immersed in the fairy world.  I began to understand completely what her staring episodes were all about, and I poured myself into more research to understand what she was going through. As her motor tics and repetitive behaviors increased, she began to self-injure and squeeze herself tightly in between her bed frame and the wall because it felt good. She would hang upside down from furniture and when I asked what she was doing she would answer, “Trying to fix my brain.”

She came to me on a Tuesday evening at 5:30 with tears in her eyes and asked me to take her to a doctor to “make it stop”. I could no longer pretend that I could fix her problems. Thus began the long process of accessing different doctors and counselors, which ultimately led to a diagnosis of Asperger Syndrome, a milder high functioning form of Autism Spectrum Disorder. I finally had an answer to my question, “What is it when it isn’t Autism?” Turns out, it’s mild Autism. Symptoms of Asperger Syndrome are often milder and more difficult to diagnose in girls than boys. Boys with the disorder tend to act out and become aggressive while girls tend to withdraw and be labeled as “shy”. Girls with the disorder also tend to respond better to therapy than their male counterparts and are better at mimicking the behaviors of their parents and friends to adequately “fake” the social skills that seem to elude boys with the disorder. These important but subtle distinctions helped to explain how and why Jacquelyn could be so high functioning but still sometimes behave like a person with Autism. Her motor delay disorder, flowery vocabulary, and repetitive behaviors made sense. I now understood her obsessions with U.S. history and Egyptology and her verbal repetition of the same historical facts. Finally, all the puzzle pieces fit.

It’s been eight months since her diagnosis, and we have seen great results from her new treatment plan. She is enjoying social events, even crowded ones, and is tolerating noise and touch in an almost typical fashion. She told me recently she felt happy, and that she didn’t know she could ever be happy. “I thought I’d be upset my whole life,” she said. We know we are on the right track.

While her facial twitches have improved, her nodding is still an issue that causes pain and embarrassment. She still gets stuck on certain subjects occasionally when we try to have a conversation, but not nearly as often as she used to. She is even learning to swim, no small accomplishment for a child who used to scream when I washed her hair. If you spend time with her now, you may only describe her as quirky and intelligent, not as a person with a social disability. I have finally accepted that her life will be a series of ebbs and flows and that we will likely always be working to manage her anxiety.

It is time now for me as her mother to stop asking questions or researching therapies and just let her be, and this is the last part of her story that I will share. It is her story now, and she can share it as she chooses. She can tell me for the 100th time about King Tut’s broken leg or recount the exact time of Abraham Lincoln’s death, and I will listen. After all, it’s who she is, and I like her that way.

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  1. I have just read your amazing story. I am a toddler and pre school teacher. I was doing some research when I came across your story and I wanted to thank you for sharing it. You are truly an inspiration. Best wishes to you and Jacquelyn as you continue through your journey.

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