My 10-year-old autistic daughter, Emma, woke up in the middle of the night crying. Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack. Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood. I "got it" in a way that until now I had not.
For years, Emma has periodically complained about her ears. When she does, we rush her off to various doctors and specialists, only to be told that there is "nothing wrong." But those words are being said by neuro-typical doctors and specialists; and to a neuro-typical there is, indeed, nothing "wrong." But Emma is not neuro-typical -- what appears fine to us does not feel fine to Emma. She is particularly sensitive to the changing air pressure. She feels unbearable pain in her ears. We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado. Emma loves swimming. She particularly loves jumping off the diving board and swimming underwater. I could be wrong, of course, but my guess is that the pressure is worsened with those activities.
Last night, by the time I'd woken up and gone to her, my resourceful husband Richard had already calmed her down. When she saw me, she came to me and wrapped her arms around me, her cheeks still damp from her tears. She preempted me by saying, "Ah, baby. I know, I know. Your ears are hurting." Her voice sounded almost exactly like my own. She was using the words I use. She was saying those words with the same tone I say them.
I held her for a few seconds before following her into the bedroom. I urged Richard, bleary-eyed and exhausted, to go back to bed while I sat with Emma. "Have to go see nurse Mommy," Emma said, stroking my arm. "Go aaaaahhhhhh!" Emma made a pretend cry. "Mommy come! Mommy come. I need help! AAAAAHHHHH!" Emma continued in a soft voice, reenacting what had happened just moments before. "Daddy says -- you have to blow your nose. Oh, I know, I know it hurts." Emma nodded her head up and down. "Mommy's here! It's nurse Mommy!" Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.
As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair, I wondered what must it be like to feel the sudden shock of pain caused by something you cannot see or stop. No matter how much you cry out for help, it isn't lessened. I tried to imagine. How upsetting to be the only one feeling it. How disorienting. As I sat with her, I tried to become aware of any pressure in the air. I could feel it in my ears, not painful, but uncomfortable, building the more I concentrated. I noticed how my heart beat as the pressure increased. I could feel some anxiety with my growing awareness. I took a few deep breaths. What would it be like if I felt this all the time? How distracting it must be. What if I felt this, but much more intensely? What if I felt this pressure, but the pain was excruciating? How terrifying it would be, all the while hoping someone could remove what was causing the pain.
Only I couldn't.
For more on my daughter's journey and mine through her childhood of autism, go to: Emma's Hope Book.
For more by Ariane Zurcher, click here.
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