I Thought My Child Was Perfect...Until Somebody Told Me He Wasn't

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 an almost unbearable tenderness. I couldn’t stop cuddling and kissing him. When I picked him up from preschool, which he started at age three, I’d call out “Sweet love of my heart!” and he’d run over and fling himself into my arms.

I’m not exaggerating when I tell you that 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 what could I do? He was so much more than I could have imagined, the world’s most perfect child.



And then one day someone told me he wasn’t.



From the beginning, Cody moved to an inner beat. He was a precocious learner, highly self-motivated, with a tremendous capacity for concentration. His interests before the age of three included astronomy, geography, and geology. At two and a half he could identify every country in the world on a map and recite the ages of the earth from its formation four and a half billion years ago up to the present.

Is it surprising, then, that he had little to say to other toddlers? When I arrived at his preschool I’d often find him standing at the edge of the yard, his nose buried in the jasmine, while the other children drove the big plastic cars and tossed balls. 
 


“My own gentle Ferdinand,” I thought with a smile.



As Cody prepared to enter kindergarten and his lack of interest in his peers persisted, we started sending him to social skills classes, where he was prompted to engage in reciprocal play with other kids. Then, at the urging of his social skills and kindergarten teachers, we took him for a full neuropsychological assessment.

Although we suspected the expensive, time-consuming process was overkill, his teachers persuaded us that we had nothing to lose by gathering information. By doing the assessment, 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.


“What a load of crap,” my husband Jim said bitterly as we left the building. “What a colossal waste of money and time.”

Although I was every bit as upset as Jim was, I was less sure of myself. Before dismissing the diagnosis, I wanted to understand it. I began to read up on Asperger’s Syndrome. As I read, I kept a running checklist in my mind: this describes Cody, this does not; this does a little, this not at all. 



As anyone familiar with Asperger’s and other variants of high-functioning autism knows, the diagnosis 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, by definition, 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.” 

Furthermore, since many “Aspies” are also intellectually gifted, there are articles and websites devoted to the idea that traits common to the profoundly gifted, such as extreme focus and social awkwardness, can be misread as Asperger’s. Terms like “twice-gifted” and “twice-exceptional” have been coined to describe the many individuals who fit the criteria for both. Some professionals even disagree as to whether Asperger’s is a variant of autism at all. While one of the hallmarks of non-Aspergian autism is delayed (and sometimes non-existent) language acquisition, Aspies develop language at an early age, often at a very high level. “Little Professor Syndrome” – extremely sophisticated vocabulary in very young children – is in fact one of the signposts of Asperger’s. 



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 (prolonged sleep deprivation and the need to constantly split my attention = cranky mama), there is no doubt that the stress of the diagnosis and the subsequent interventions we’ve sought – occupational 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 to 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 perhaps in others, to feel that there’s something “wrong” with him.

Since the diagnosis, traits which I used to consider just individual quirks of his, such as obsessiveness and a tendency to stand a little too close to people, cause me perpetual worry. But 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 just where that line is.

How many interventions are too many? At what point does he start to get the message that there’s something about him which is inherently flawed?

Cody will feel defective, I believe, if he senses that I consider him defective. I cannot, must not, let that happen.

But 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 – the him that is him – is precious beyond words; an exquisite, utterly unique manifestation of life’s miracle. I knew this the moment he was born, and beneath all the nervous chatter this process has created in my mind, I know it still. 


In terms of the diagnosis, I only wish the word “Syndrome” or its uglier sibling “Disorder” were not attached to the word Asperger’s. I prefer to call it Asperger’s Personality Type, or even Asperger’s Gift. Because in many ways, it is a gift. When Cody’s interested in something, his laser-sharp focus enables him to absorb it exponentially faster than the rest of us can. But like so many gifts, it comes with challenges. In his case, these include certain gross and fine motor skills and deciphering the subtleties of social interaction.



The epigraph to “Parallel Play,” Tim Page’s lovely, lyrical memoir of growing up with undiagnosed Asperger’s, reads “Be kind, for everyone you meet is fighting a great battle.” I think of that often these days. Because the truth is we all have gifts and challenges. Someone happens to have come up with a name that goes a certain distance toward describing Cody’s. My own battle, or yours, might not have a name, but that doesn’t mean we aren’t fighting it. And so I remind myself each day, as I step into my armor and prepare to face the world: My child is perfect, exactly as he is.

Ima Amare is a writer and the mother of two perfect boys.