The Changeling
May. 25th, 2010 11:21 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
matril(I wrote this a while back, but it occurred to me that I should probably post it here.)
I don't know when Luke literally became autistic. Was it written in his DNA? Did it become inevitable when he was exposed to some seemingly innocuous environmental factor? Maybe it could be pinpointed by milestones, or lack thereof, at around 18 months when the rate of his language regression began overtaking the rate of his language acquisition. The potential must have always been there.
But the human mind doesn't look at things that way. No matter how rationally I try to view the situation, to know that the condition was there long before I was aware of it, for me Luke didn't become autistic until someone said it. I'm still not talking about a single moment in time. When he was given the official diagnosis in November of 2005, we had already begun to think of it as a real possibility. There were hints all through that summer; from the pediatrician's concern about his language, from the Early Intervention personnel who noticed his repetitive play and peculiar mannerisms; from well-meaning friends who said, "Oh, that's just like my so-and-so who has autism."
By the time these warning flags were coming up, Luke was already autistic. It had already happened. But not to my mind. To my mind, my son, the brilliant child who had hit all the proper milestones as a baby, who I was sure was going to read at age three, and write stories and learn musical instruments and play board games with us; that son had been taken away and replaced with someone who wouldn't talk or make eye contact or understand basic social skills, who may never live independently. He had been stolen, and a stranger was left in his place.
This feeling was all the more accentuated by the fact that Luke has the sort of autism that doesn't manifest right away. I knew what autism was, so I thought, and Luke didn't have it. Surely not! Where was the hand-flapping, the sitting in a corner and watching things spin, the weird noises? He would look us in the face and laugh; he would point out the parts of his face and say their names! People who knew more, however, could spot the subtle signs. They could see that his small regressions would grow worse, that more symptoms would show up as time went on.
They predicted his future behavior with uncanny precision. After the diagnosis, more and more symptoms showed up, like a case straight out of a textbook. Along came the hand-flapping, the verbal stimming. Now Luke's favorite place is alone in a corner, spinning something. I knew, rationally, that without a diagnosis and the treatment that it enabled, those symptoms would be much worse, but it didn't feel that way. It's human nature to misconstrue cause and effect relationships. "My great-aunt drank pineapple juice every day of her life, and she never got sick. Pineapple juice is a cure-all!!" "My son was fine, just a little language delay, then they said he had autism, and look at all his problems now!"
That was why we held on to denial for so long. We didn't get help for his language delay until he was two-and-a-half, even though it had been apparent for almost a year. We didn't start contacting specialists for an evaluation until he was nearly three. Now I want to go back in time and smack myself into getting him help sooner, but I know why I didn't. Even though the problems were there, they didn't feel real until someone planted a label on him. Then it was irrevocably, undeniably real. As long as we resisted, we could keep telling ourselves, "He's fine; he'll grow out of it." I don't think our hesitation resulted in irreparable damage - we did, after all, catch him before pre-school age, and there's no doubt that he's come a long way since the diagnosis. But that divide between rational evidence and the way the mind perceives things continues to haunt me.
On a subconscious level, I tend to divide my life into two periods - pre-diagnosis and post-diagnosis. It's not the date in November 2005, but that uneasy summer and fall when everything changed, even though it had already changed, or had never been what I imagined it was. In my old life, I could see the word "autism" on a magazine cover or in an article and casually skim right over it, without the little skip of the heart that accompanies the word now. There wasn't a constant effort to suppress the bitterness and grief every single time I saw a happy family of normal children. There were only the ordinary questions of parenthood - will my child turn out happy and healthy, what will he want to do with his life...instead of will my child ever talk, will he become such a danger to himself or his siblings that I have to put him in a home?
On this side of the divide, I am careful. I don't take anything for granted. I'm hesitant, trying to find a new way to hope that won't inevitably lead to disappointment. I'm still learning how to live in this new place. It's hard to gauge how far I've come along the path to acceptance, because for me it's never a straight line. I progress, then fall back, then trudge forward again. But at least now I'm walking instead of burying my head in the sand.
I don't know when Luke literally became autistic. Was it written in his DNA? Did it become inevitable when he was exposed to some seemingly innocuous environmental factor? Maybe it could be pinpointed by milestones, or lack thereof, at around 18 months when the rate of his language regression began overtaking the rate of his language acquisition. The potential must have always been there.
But the human mind doesn't look at things that way. No matter how rationally I try to view the situation, to know that the condition was there long before I was aware of it, for me Luke didn't become autistic until someone said it. I'm still not talking about a single moment in time. When he was given the official diagnosis in November of 2005, we had already begun to think of it as a real possibility. There were hints all through that summer; from the pediatrician's concern about his language, from the Early Intervention personnel who noticed his repetitive play and peculiar mannerisms; from well-meaning friends who said, "Oh, that's just like my so-and-so who has autism."
By the time these warning flags were coming up, Luke was already autistic. It had already happened. But not to my mind. To my mind, my son, the brilliant child who had hit all the proper milestones as a baby, who I was sure was going to read at age three, and write stories and learn musical instruments and play board games with us; that son had been taken away and replaced with someone who wouldn't talk or make eye contact or understand basic social skills, who may never live independently. He had been stolen, and a stranger was left in his place.
This feeling was all the more accentuated by the fact that Luke has the sort of autism that doesn't manifest right away. I knew what autism was, so I thought, and Luke didn't have it. Surely not! Where was the hand-flapping, the sitting in a corner and watching things spin, the weird noises? He would look us in the face and laugh; he would point out the parts of his face and say their names! People who knew more, however, could spot the subtle signs. They could see that his small regressions would grow worse, that more symptoms would show up as time went on.
They predicted his future behavior with uncanny precision. After the diagnosis, more and more symptoms showed up, like a case straight out of a textbook. Along came the hand-flapping, the verbal stimming. Now Luke's favorite place is alone in a corner, spinning something. I knew, rationally, that without a diagnosis and the treatment that it enabled, those symptoms would be much worse, but it didn't feel that way. It's human nature to misconstrue cause and effect relationships. "My great-aunt drank pineapple juice every day of her life, and she never got sick. Pineapple juice is a cure-all!!" "My son was fine, just a little language delay, then they said he had autism, and look at all his problems now!"
That was why we held on to denial for so long. We didn't get help for his language delay until he was two-and-a-half, even though it had been apparent for almost a year. We didn't start contacting specialists for an evaluation until he was nearly three. Now I want to go back in time and smack myself into getting him help sooner, but I know why I didn't. Even though the problems were there, they didn't feel real until someone planted a label on him. Then it was irrevocably, undeniably real. As long as we resisted, we could keep telling ourselves, "He's fine; he'll grow out of it." I don't think our hesitation resulted in irreparable damage - we did, after all, catch him before pre-school age, and there's no doubt that he's come a long way since the diagnosis. But that divide between rational evidence and the way the mind perceives things continues to haunt me.
On a subconscious level, I tend to divide my life into two periods - pre-diagnosis and post-diagnosis. It's not the date in November 2005, but that uneasy summer and fall when everything changed, even though it had already changed, or had never been what I imagined it was. In my old life, I could see the word "autism" on a magazine cover or in an article and casually skim right over it, without the little skip of the heart that accompanies the word now. There wasn't a constant effort to suppress the bitterness and grief every single time I saw a happy family of normal children. There were only the ordinary questions of parenthood - will my child turn out happy and healthy, what will he want to do with his life...instead of will my child ever talk, will he become such a danger to himself or his siblings that I have to put him in a home?
On this side of the divide, I am careful. I don't take anything for granted. I'm hesitant, trying to find a new way to hope that won't inevitably lead to disappointment. I'm still learning how to live in this new place. It's hard to gauge how far I've come along the path to acceptance, because for me it's never a straight line. I progress, then fall back, then trudge forward again. But at least now I'm walking instead of burying my head in the sand.
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Date: 2010-05-25 08:59 pm (UTC)no subject
Date: 2010-05-25 09:06 pm (UTC)