I will never forget the presentation and lecture of one particular pediatric neurologist from Boston when I was attending an autism conference in Atlanta. The neurologist stood at the podium and
explained that a long-term autism patient of hers, who, at the time, was in her early 20’s, had become ill with a virus and had an elevated fever of around 105 degrees. During a 4-hour period, when her body temperature was at its highest, this life-long non-verbal individual with autism sat on the couch with her aging mother, and spoke for the very first time in her life. Not only did she speak, but she also spoke in full sentences, expressing to her mother everything she had always wanted to say but was never able to! She thanked her mother for taking care of her and for bathing and changing her. She apologized for being the cause of her mother’s sacrifices. Her words clinched my heart like a vice.
The doctor explained, with her own voice quivering, that as the patient’s fever broke, she regressed back into the silence of her autism. Tears streamed down the doctor’s cheeks and it was all I could do to keep from uncontrollably sobbing out loud. You see, like her patient’s mother, I am also a parent of a non-verbal child with autism. I fantasize about what my son, Nathan, might say to me, if only he was able. I thirst for understanding of this oppressive “bandit” that has robbed my son of his voice and I gravitate towards those who courageously swim against the current, determined to discover causation and identify treatment. The thirst for understanding drives me to sneak into “clinician-only” lectures, as I did that day in Atlanta, where I heard this incredible pioneer-of-a-doctor vulnerably open the floor to her colleagues, requesting they weigh in with their thoughts on what in the world could have occurred in this person’s neurochemistry to allow for such a chain of events to occur.
During that lecture, I was seated in the second row from the back, yet I must have stood out like a sore thumb. I had my son’s EEG in hand and was flipping through the pages, taking notes frantically during every doctor’s presentation. When the presentations had concluded, and the crowd was spilling out into the exhibit hall, the neurologist from Boston walked up to me and so sweetly asked, “Is that your child’s EEG you have there? May I take a look?” My hands were shaking as I handed it to her and she invited me to sit with her as she reviewed the document. She was so gracious and never once blew the whistle on me for sneaking into those lectures. Those brief moments with her set me on an incredible course of discovery about my son’s complex neurology; it is because of physicians like her, who take a moment with parents like me, that I am certain there is hope for our affected children. I believe that we are on the verge of incredible discovery about autism, and certain doctors are leading science in that direction. It is with incredible gratitude that I designed The “Autism Pioneer” Pendant to honor such physicians.
by Vicki Sotack, Cincinnati, OH, USA