Before diagnosis, in denial
Autism mother Tamar Bihari writes about how—five years ago, in early 2001—she took “that astonishingly painful first step from denial into realization” about her son Damian being autistic.
In my head now, I divide my son’s life into the time Before Diagnosis and the time After Diagnosis. He hadn’t changed from one day to the next, but I had. If you step outside on a sunny day, the light stabs your eyes, turning the world white and strange. My awakening felt like that, blinking in dismay after so long in the dark.
Bihari’s essay, Facing the Moment of Truth: A Mother Finds Painful Answer to Question: ‘Is It Autism?’ can be read on the website of Autism Speaks.
The word “diagnosis” is from two ancient Greek words, dia meaning “through” and gnosis meaning “knowledge” and, for us too—seven years ago—understanding Charlie’s autism diagnosis was a process in which (in Bihari’s words) our “eyes began adjusting to the truth.” Another ancient Greek word for “knowing,” oida, is related to a word for “seeing,” eido, and so Bihari describes her acceptings of Damian’s being autistic through a metaphor of sight.
The turning point is not the diagnosis itself, I think. It’s the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.
Back then, it felt like I was stepping into an alternate universe, one where light was dark, good was bad and a child was broken inside, where someone said “How are you?” and I burst into tears.
Looking back, I see it differently. With knowledge comes power. Once I knew Damian’s diagnosis, once I understood what was wrong, I could work with him, learn to engage him and bring him step by step into the world. And so I became a firsthand witness to the most profound transformation I will ever experience: ultimately, my son becoming himself, a chatty, sassy, imaginative eight-year-old boy.
Charlie too has become a nine-year-old of sass and spunk and spirit—being able to “see” that one’s child has autism opens up a whole new world, a world colored in a spectrum wholly, newly, achingly beautiful. Bihari’s Facing the Moment of Truth: A Mother Finds Painful Answer to Question: ‘Is It Autism?’ is itself a tender, honest account of her own journey from denial to knowledge and I think more than a few families will see their own experience reflected in it.
Related Stories
POSTED IN: Autism Organizations, Classics, Diagnosis, Parenting
3 opinions for Before diagnosis, in denial
Rose
Jul 3, 2006 at 3:25 am
Looking back, those were tough times. She describes them well. I imagine her blog is interesting, as it has a timeline. Your own blog is great that way, as it describes successes,failures, frustrations, and the ways that Charlie connects. Mothers see things in a way no one else can.
What always gets to me is how similar our kids are to each other, regardless of where they are on the spectrum–because they follow a different developmental track. I could see Ben in her son.
Kristina Chew, PhD
Jul 3, 2006 at 9:58 am
I see that tooo—-I often think, at the end of the day, we share so much more than we differ.
Janna’s Thoughts… » Blog Archive » Congratulations!
Jul 3, 2006 at 2:57 pm
[…] There’s a short piece called “Before diagnosis, in denial” over at Autism Vox. I read it this morning and found myself thinking about the strange world I’ve entered since my own diagnosis of ADHD, last February. […]
Have an opinion? Leave a comment: