"The first five years of my son’s life were a delirious extended honeymoon. Every time I looked at him – and I looked at him all day long – my heart ached with tenderness. I couldn’t stop cuddling and kissing him and in five years I never once felt anger toward him. My mama friends hated me for it, as they teasingly told me all the time. But he was more than I could have imagined and to me the world’s most perfect child. And then one day someone told me he wasn’t.
From the beginning, Cody moved to his own inner beat. He was a precocious learner, highly motivated with great concentration. His interests, before the age of three, included astronomy, geography and geology. I was not surprised that he had little to say to other toddlers. When I arrived at his preschool, I’d often find him by himself at the edge of the playground, his nose buried in the jasmine, while the other kids drove their big plastic cars and tossed balls. “My own gentle Ferdinand”, I thought with a smile.
As Cody’s lack of interest in his peers persisted, his kindergarten teachers suggested a full psychological assessment. Initially resistant, his teachers persuaded us that we had nothing to lose by gathering information. By doing the assess- ment, they asserted we could learn how his mind worked and the best way to nurture his phenomenal gifts. Six weeks and three thousand dollars later, we sat in a carpeted office facing a ponderous wooden desk, while an earnest young man with faded blue eyes told us our son had Asperger’s Syndrome. Anyone familiar with Asperger’s knows that the diagno- sis is both subjective and somewhat nebulous. It’s a behavioral diagnosis – there’s no lab test that can tell you whether or not someone has it. It’s also a spectrum diagnosis which means there is tremendous variation in how it is expressed in different individuals. As the saying goes, “if you’ve met one person with autism, you’ve met one person with autism.”
Cody is seven now. It’s been almost two years since we received the diagnosis. The other day he said to me, “I don’t mean to hurt your feelings, but I think you were nicer when I was younger.” I was immediately struck by the truth of his statement. I was nicer then. While the addition of Cody’s little brother to our family two years ago was probably the largest contributor to the erosion of my once even temperament, there is no doubt that the stress of the diagnosis and subsequent interventions we sought – occupation therapy, play therapy, therapeutic summer camp, etc. – were a major factor as well. Meanwhile, my feelings about the diagnosis continue to evolve. If the word Asperger’s can help Cody get support services from our public school, great. If it gives people a framework for understanding his quirks, that’s good too. And if it can help him understand himself and feel less alone in the world, so much the better. What I don’t like is the tendency it creates in me and others, that there’s something “wrong” with him. Before the diagnosis, traits that I used to consider just individual quirks, now cause perpetual worry. There’s a fine line between supporting and “fixing”, between doing my best to help Cody become the happiest, most fulfilled version of himself and trying to turn him into someone he’s not. I’m constantly asking myself – where is that line. How many interventions are too many? At what point does he begin to think he is flawed? Cody will feel defective, if he senses that I consider him so. I cannot, must not, let that happen. How do I find my way back to the truth of my child’s perfection? What do I mean by perfect? Only this: My child is exactly as he should be. Cody’s essential self – who he is – is precious beyond words; he is an exquisite, utterly unique manifestation of life’s miracle. I knew his the moment he was born and beneath all the nervous chatter this process has created, I know it still.
Ima Amare is a writer and the mother of two perfect boys."
