If you have a child with autism, you have probably read everything about the disorder—from articles written by other parents raising a child with autism to psychologists giving their professional opinions to people who have the disorder sharing their own experiences. And you have likely taken your child to the pediatrician for advice about childhood illnesses and parenting suggestions for your special child. In your mind, you try to coalesce all of the information from so many diverse sources as you try to figure out how to help your child to reach his or her full potential.
But what would you think if you took your child to the pediatrician and instead of the same routine advice, she is able to explain things to you that your child is likely experiencing, but may not be able to communicate? You're probably thinking, "Great, I found a pediatrician who has an autistic child, too." Nope—actually the pediatrician has autism spectrum disorder! Say what?!
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The story of my diagnosis begins almost three years ago, when I was officially diagnosed with Asperger Syndrome on May 15, 2013 (later revised to "Autism Spectrum Disorder-Mild"). At the age of 42, I finally had an explanation for the decades of struggling to fit in and for the severe anxiety associated with struggling to survive in my career.
When I was a child, autism referred to the more severely affected, nonverbal children. That certainly didn't apply to me. After my diagnosis, I started reevaluating my entire life through the eyes of autism. So much now is starting to make sense. In second grade, I begged another girl to be my friend. In high school, I made a joking comment to someone and my classmates got really upset. I felt the tight grip of pressure in my chest from everyone's reaction, but I didn't understand what I had said wrong.
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All my life, my "obsession" was becoming a doctor. There was a path to follow and getting into medical school was the final step to this dream coming true. The very first day stands out in my mind as the day when one of the deans approached me "out of concern" because she noticed that I "seemed more anxious than any other student." From that day on, medical school became the start of a career-long roller coaster ride of anxiety, when my personal drive and intelligence smashed full-speed into the brick wall of all of my social skills' deficits. As I fought to survive and achieve my dream, the emotional toll it took on my already-fragile self-esteem left permanent scars that to this day I struggle to overcome.
Graduating medical school should have been the realization of my lifelong dream, but the struggle to fit into a career where so much relies on social skills meant that my journey was just beginning, and every day was a new battle to survive. I started my career in pediatric emergency medicine where every day was different, and I loved the puzzle of piecing together clues and making a diagnosis. However, the high-stress environment, the tragedy of young children dying, and the physically unbearable work schedule all built up over the years. To see colleagues spend their entire careers in one place made me feel like an incredible failure as I floundered around trying to find my career niche.
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My practice style focused on providing information to educate parents rather than performing unnecessary tests or giving unnecessary prescriptions. For many parents in the emergency department, however, this was the trigger for complaints because I "didn't fulfill their expectations" (that antibiotic for their child's virus, etc.). Most times, this occurred long after they left the hospital. I never suspected that anything was wrong, only later to be criticized by my supervisors. It did not matter that I did everything medically correct, only that the parent was "not satisfied." And so this pattern continued: well-meaning advice by me would result in complaints by the parent and censure by my supervisors. My brain became so conditioned by this that the grip of panic in my chest became increasingly frequent, triggered even by thinking about work. No wonder so many on the autism spectrum develop PTSD after years of this type of unconsciously triggered anxiety and the emotional scars it leaves behind.
Switching careers to general pediatrics, where I am now, was my attempt to find families who could appreciate my practice style. However, new sources of stress come from the constant daily struggle to navigate the subtleties of office policies and politics that everyone else seems to understand but often make no common sense to me.
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As I am beginning to understand myself better after my diagnosis, I am also realizing that there are many great benefits to being a pediatrician with autism. I think that choosing pediatrics as my career was unconsciously due to the realization that children are very accepting. My personality traits that are considered deficits in the adult world of communication are actually strengths when dealing with a scared child. I can allow myself to get very silly with a child to get them giggling and no longer afraid of my exam. The depth of gratitude expressed by many of the parents of these children has been overwhelming and incredibly rewarding.
Another of my "Aspie" skills is being very detail-oriented. Sometimes this focus allows me to pick up a single clue that leads to a diagnosis that otherwise might have been missed. This skill is also the one that causes me the most stress, however, because it means that I am frequently one or two hours behind schedule. The more burdened I become by time-pressure (a notorious detriment to most of us with ASD), the less efficient I become. I suffer daily anxiety struggling to balance family life with the hours of paperwork and indirect patient care tasks that I still have to do during my personal time because I cannot complete them during regular work hours. Physical exhaustion and emotional guilt are my constant companions.
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I do not tell most parents that I have ASD. However, when I do share this personal information with parents of children who have ASD, the sense of appreciation and acceptance is slowly beginning to give me confidence in myself as a person and as a pediatrician. I am becoming more hopeful that some of my emotional scars might eventually fade away.
This journey of personal and professional self-discovery is something that, until now, I have kept deep inside myself. However, by taking the risk of putting aside "normal professional boundaries," I hope to foster a better understanding about the struggles that all of us on the spectrum experience to some degree or other. All of my struggles to survive in a career that relies on social skills have led me to the unique position where I am able to understand my special patients in a way that no other pediatrician can. Perhaps in that realization, I have finally discovered my own special career niche.
Rochelle Caruso Flynn, MD, FAAP, started her career as a pediatrician specializing in pediatric emergency medicine, but with her husband's encouragement, Rochelle decided to make a career change to general pediatrics. Then, in May 2013, her world once again turned upside down when she was diagnosed with autism. Rather than providing relief as the explanation for many of her life's challenges, Flynn now finds herself reevaluating her entire life from this new perspective.