25 July 2001
|A friend asked me recently whether a relatives child might be autistic. From her description of him, it sure sounds like hes on the spectrum. The next question, and its a doozy, is how to bring this up with his parents. Its come up on my special needs kids list too. How do you tell someone their kid might have a developmental disorder? As a parent, you dont want to believe it. It feels like an insult. How could your precious, wonderful, charming child be defective? Its impossible. But someone has to say it or the years will keep ticking by and the kid will lose any chance of full "recovery", as they call it. I call it living a happy, full life. Thats a hell of a thing to deny a child.
On the other hand, theres denial and theres plain old fashioned ignorance. That was us. When we visited New York a year and a half ago, my father noticed that Damian (then eighteen months old) wasnt into playing with him, didnt engage the way other kids his age would do. He brought it up to me later on the phone. He said it point blank: "I think he might be autistic." But I didnt know what autism could look like, I didnt know that it had so many faces. I thought he was just pouting because Damian didnt warm up to the Grandpa he hadnt seen for over a year.
Was there a way he could have told me what he saw, what he wondered, and had me actually hear it? I dont know. I dont know if I was ready. But I remember wondering about Damian on that same trip. I compared him to my friend Cathys twins, born just three days after him. They could ask for juice when they were thirsty, they slid down the slide with complete fearlessness. Damian couldnt and didnt. And he flinched when Isaiah came over to him while he was playing.
I knew he was different. I didnt know for sure something was wrong. I might have heard it if my father had used different words. Maybe if hed seen Damian at Cathys, he could have talked to me about developmental issues rather than socialization problems and then I might have allowed the thought to resonate. Thing is, though, it wasnt just my ignorance, it was my fathers too. When he brought up autism, he started asking me questions. Did Damian smile? Yes. Did he laugh? Oh yes. Did he look me in the eye? Yes, sometimes. Well, okay, then. He must be fine.
Most of us -- even my father, a man with a degree in psychiatry and very nearly one in neurology -- dont know what the word autism really means and doesnt mean. We associate it with mute children sitting in the corner rocking and avoiding all human contact. We associate it with people who will never, no not ever, be able to live in the world, not with all the therapy in the world. We associate it, in other words, with a life sentence. No wonder we dont want to hear the word. No wonder we cant understand it when we do. It doesnt compute, doesnt fit. Not my child, not that.
As a result, people dont tell you the truth. Wed been out of touch with a friend for a long time. Dan called her recently, told her whats been going on with Damian these past months. She said, "I thought so. I saw it, last time we got together in that restaurant. Remember? I asked you if he answered to his name? Thats why I asked."
Then why didnt you say anything? Damian was two then. We lost nine months. He could have been nine months farther along by now. Hes at an age when every month counts. Thats a lot of time lost.
If wed have believed her, that is. If shed succeeded in getting us to pay close enough attention. I dont know that she could have. The world is busy telling you that its good to be an individual, good to be quirky, that you dont want to fit your child into a mold and besides, all kids develop differently, after all Einstein didnt talk until he was four years old! Everyones so busy reassuring you that you dont need to worry that when someone turns around and says maybe you do, it comes as a shock. Its far easier to dismiss it than to hear it. I imagine its far easier to lash out than it is to take action. Its like when your best friend tells you the man youre insanely crazy in love with is methodically sleeping his way through the entire staff list at his office, even his grizzled old boss. Do you believe her? No, you probably think, "Shes just jealous, she just wants to poison my relationship," and jettison the friendship instead of the relationship with Mr. Sleep-His-Way-To-The-Top. And thats just love. Imagine the powerfully fierce protective instinct that kicks in when its your own child. No way no how is my little one damaged goods. No sirree, youre just imagining things because you want to hurt me.
So our friend, instead of telling us what she saw, encouraged us to put him in preschool sooner rather than later, figuring the contrast with typical kids his own age would reveal the truth without any friendships trampled in the process.
She was right, too. Sort of. Sitting on the floor in that damned classroom, I saw very clearly. At first, I thought some of the more verbal boys were precociously talkative. Then I realized, no, Damians lagging behind. And then someone told me. It was only the second week. I wasnt alone yet. Other mothers still lingered making sure their children acclimated. One of them, someone Id known for a long time, said, "Hes either brilliant or theres something wrong. Why dont you take him to a pediatrician? You should get it checked out." She was the blunt type. I knew this about her and so I wasnt offended. Instead I listened. Dan had said it before but I wasnt ready to hear it. After seeing the other children, hearing it from a woman whose son was just two weeks ahead of Damian chronologically but too far ahead of him socially, I could finally hear it. I could finally call for a consult. We called it a speech consult. We thought it was no more than a benign delay, nothing a little speech therapy wouldnt solve. Dr. Jay saw more. Moments after he walked in the examining room door, he said, "But you said speech consult, not behavioral...?"
And that was the beginning. Even so, it might have taken us several more months to hear the truth, to understand it. If it werent for the Web, wed never have guessed on our own. Professionals dont want to say the word. I still havent quite figured out why, but its too bad. If a friend hadnt told me you should say "autism" when you call the Regional Center for services, youll get tested faster, if she hadnt steered me toward an autism checklist so I could sound plausible when I used the word, if I hadnt filled it out and checked the totals once, twice, three times, with the result always coming out in the problem zone, if I hadnt done all that and Dan done the same, reading and reading and reading some more and saying, "Some of this doesnt sound anything like our child, but damn if some does," if we hadnt done all that, we might not have been ready to say the word ourselves and therefore heard an acknowledgement in return.
If we hadnt known what we were looking at as early as February 1st, little more than a week after that first consult with Dr. Jay, we might not have gotten everything else in place so quickly. We wouldnt have known to read Greenspan. We wouldnt have known to ask for floortime therapy, we wouldnt have known to push for occupational therapy ("after all, its only a speech problem") or get him in the right school program. Two and a half months went by between Lauras confirming nod and Damians full panoply of services. Two and a half months is nothing. What about two and a half years? I feel sick thinking about it.
Denial can deny your kid the tools he needs to get back on track. Why would anyone do that to a beloved child? It goes back to the meaning of that word. Autism.
I cried so easily those first few weeks after we figured out Damians diagnosis. I felt like an open wound. I felt like something was damaged in him, something that could never be repaired. I remember looking at him asleep in his bed. His face so peaceful, so sweet. Looking at him with this intense pang: he looks so normal, he doesnt look broken at all.
My eyes told me true: hes not broken. Far from it. Hes still the child I knew before the diagnosis. Hes still my bright, loveable little boy. Its been verified, in fact. His intelligence has now been documented by specialists. His sweetness has been observed by therapists who have been around dozens of small children. Hes a special kid and I dont mean that in the special needs sense.
Its still hard. Of course it is. Do I wish he didnt have to go through this? Of course. Its only human. I look at other children and see how easy it is for them to talk, how easy it is for them to make friends, and yes, I feel a pang.
But now I also see that Damians issues may allow him to be an extraordinary person later in his life. Einstein was probably autistic. Bill Gates may be too (Aspergers, a high-functioning variant), and Andy Kaufman could have been, along with so many historical figures it would make your head spin. I was just reading a few days ago about a new book: Diagnosing Jefferson. Thats right, Thomas Jefferson may have been on the spectrum. Temple Grandin (a successful high-functioning autistic woman who has become a spokeswoman of sorts) commented on the book in an Amazon review, saying "A small amount of autism traits can provide an advantage." Interesting, no?
We havent lost Damian to the autism. The opposite, in fact. Knowing his issues allows us to help him become more and more himself. Denial can be a powerful thing. The truth is more powerful still.
copyright 2001 Tamar