It was this state, this blissfulness in Emma that caused us tremendous existential concern. When Emma was first diagnosed she was two, just three months shy of her third birthday. She was an exceedingly happy, though quiet and increasingly isolated child. If left alone, she was content to putter around, seemingly unaware of dangers, which led her to cross the street without looking, wander into a raging surf at the beach, go off by herself never looking back to see if anyone knew or was following, etc. When one of us tried to interact with her, she immediately made us aware of her displeasure – we were rejected, pushed away. Emma was happiest in the company of herself. It was this state of apparent blissfulness, we realized, we would have to break through in order to have any hope of connecting with our daughter.
Parents often describe their child diagnosed with autism as “slipping away” from them, the bizarre sense that their child “was disappearing” or “fading.” These are the words we use to describe the inexplicable distance and disconnect we feel from a child who appears not to need nor want anything from us or the world. These words cannot adequately describe the inexpressible grief, the feelings of impotence that inevitably arise from parenting such a child. The bizarreness of Emma’s “autism” is beyond description. Our decision to break into Emma’s state of bliss was not without land mines. We were aware that the world we wished her to enter (ours) was both a selfish desire on our part, but also selfless, in that if we didn’t, it seemed likely she would only sink deeper into a world of her own making, isolated, alone and silent, making it impossible for her to survive.
I am reminded of the poem by John Donne – “No man is an island entire of itself; every man is a piece of the continent, a part of the main…” That she was unaware of this, seemingly incapable of grasping what this meant was something we knew we would have to teach her. It is something we continue to work on.
Emma’s sixth birthday
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com