Peeling an onion can be tedious, frustrating, and at times painful if the juice gets in your eyes or a cut on your hand. My experience over the last nine years searching for answers is not much different. Yes there are those who believe that I should be content with the diagnosis that was handed down from the first medical professional that took the time to evaluate the issues.
The First Layer: Autism> This first layer proved to be more a kind of general heading. The diagnosis was Autism. It is not that I felt this diagnosis was incorrect, my daughter is definitely on the spectrum, but Autism seemed too general. According to Wikipedia, “Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.” Upon further study I began to believe that Autism as a diagnosis is mostly a collection of distinct neurological symptoms for which no one knows the cause.
The Second Layer: SPD> completely unsatisfied with the general diagnosis I began to peel back the second layer which would be slightly more helpful pointing my efforts in the right direction. Having studied Autism for several months only to realize that collectively we know almost nothing about it, I switched to studying my daughter. I made the observation that she was unbelievably sensitive to sound something called hyperacusis. I also noted that she seemed under sensisitve to touch and taste and craved swinging, spinning, and basically any form of motion she could self-deploy. Was this Autism too? Back to the medical profession I went with my book of observations in hand only to learn that these symptoms were something entirely different called Sensory Processing Disorder. This diagnosis gave me only temporary reprieve from my curiosity and search for answers. For the record Wikipedia says, “Sensory processing disorder or SPD is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception).”
The Third Layer: Food Allergies> The third layer began to really make me wonder just how deep I needed to go to uncover the layers of diagnosis that were separate and distinct, but presenting simultaneously alongside Autism. I now know that these conditions are called co-morbidities according to Wikipedia this word means, “The presence of one or more disorders (or diseases) in addition to a primary disease or disorder.” The more I observed the more symptoms I began to recognize that seemed separate and distinct. The most prevalent at this time was the dark circles under her eyes that seemed to never go away. I called it her heroin sheik look. About that same time I remember getting school pictures out of her back pack and I was shocked at how sick she appeared in the pictures. I ran upstairs and put the picture side by side with last years and all the proof I needed was right in front of my face. There was another diagnosis. This time it was harder to find a medical professional who would listen to my concerns without talking to me about denial, grief, and desperation. The obvious insinuation was that I was a loon, in their mind it was simple, Ashlyn had Autism. They believed that a pursuit of any other diagnosis was a futile attempt to make me feel better. Finally we found a doctor who would listen and he said we should take a stool and urine sample to send off for comprehensive testing. We took his advice collected the samples and sent them off. When the results came back, I could not believe my eyes…..Food Allergies. My daughter was allergic to almost everything we were feeding her. How could my daughter be so sick?
Layers 4, 5, & 6: The Future> Since then we have uncovered three more diagnosis that with treatment have made incremental improvements in my daughters overall condition. I guess the message is that regardless of your main diagnosis there can be many more that will go undiscovered without parental diligence to find answers to every question. I speak to hundreds of parents every month and I encourage them to keep searching for answers to follow that protective instinct that only parents and caregivers have.