25 Apr Parent Perspective: It’s Just a Diagnosis
In support of Autism Acceptance Month in April, Denise Caudill Irons, parent of a New Hope client, and board member, shares her perspective.
It’s Just a Diagnosis
“She has autism,” the psychiatrist bluntly stated. Blindsided and flabbergasted, I could not comprehend the magnitude of those words. I knew my daughter had autistic tendencies, but I never believed that she would receive an actual diagnosis. Fear, disbelief, anger, helplessness, all of these emotions swelled in me, and I wanted to grab my daughter and escape. In reality, I froze. I stood in the middle of a tiny, windowless office breaking down. How could I allow my precious little girl to be tainted by a label? In my mind, my unique, wonderful child was condemned to a generic catch-all disorder. How could she be a statistic? I grieved that the diagnosis not only stole her future, but also her individuality.
After receiving the diagnosis, shame consumed me. I was convinced that people would treat her differently, dismiss her, and lower their expectations of her. I hoped and searched for a “magic cure” or that she would outgrow the diagnosis. Any treatment that was not invasive, we tried. In a different era, I would have been a perfect customer for a snake oil salesman.
Because I was determined not to accept a diagnosis that one person made in less than an hour, I pursued alternate possibilities. Luckily, we found Dr. Escobar at St. Vincent Pediatrics, and he ordered genetic testing. To my relief, our daughter was diagnosed with a rare chromosome disorder. For me, a chromosome abnormality trumped autism. My daughter was unique again. Today, I am quite aware of the absurdity of that belief. However, at the time, this perspective offered me hope and helped me to move forward. I began to imagine all that she could accomplish, and a label was not going to deter us.
As years passed, I realized my bias and uninformed perception was the true problem. Through experience, support, and education, my viewpoint changed. I began to see the importance of that early autism diagnosis. Without it, she might not have received the care nor had access to the resources she needed. I never found that “magic cure”, because there was nothing to cure. Accepting the diagnosis was a monumental hurdle to overcome, but my discomfort did not prevent me from getting the treatments that she needed. Some days, the old, irrational fears creep back into our lives. When we are in public and I notice the stares, I start correcting her idiosyncrasies. At times, her perseveration is almost more than I can handle, and I still cringe when anyone refers to her as autistic.
Through it all, I know that autism and the chromosome abnormality have not defined who she is. Neither diagnosis has prevented my daughter from living her best life. I am so proud of the young lady that she is becoming. I am also proud of myself for feeling those early emotions and facing the fears that materialized. The experience helped me to be better and to do better. In the end, it was just a diagnosis.
Joan StaubachPosted at 08:26h, 26 April
Denise. You are a miracle worker and should pat yourself on the back and give yourself a hug every day for all that you have done for your amazing daughter. I am in awe of your dedication to making her the very best she can be: horsewoman, cheerleader, dog lover, best friend, photographer….. Thank you so much for writing this beautifully written article. I applaud you!