Okasaneko
(http://blog.hellokitty.com/okasaneko)
A Tubby Tabby, Three Konekos, and a Life with Hello Kitty and Autism

Secrets

Secrets and HushesI ran into an old friend at a local grocery a few months back. We knew each other when our kids were very small. Her child was in a mainstreamed class in Alphonse’s school. We had the same hours in school then, even as our children were in vastly different circumstances. While Alphonse was a nonverbal toddler who required one-on-one teaching, her son, Q, was a bright, active, young boy with emerging, but very comprehensible, language.

Every morning, as the moms and nannies sat down for the long wait, she and I would seek our favorite corner of the lounge. Armed with our cross-stitching sets, books, and other paraphernalia to while away the long hours of waiting, we would often break the monotony of stitching with idle talk. In one of those long hours, she told me that their families — his and hers — do not know that Q was diagnosed with autism.

I’ve always been very upfront about Alphonse’s condition. The day he was diagnosed, I called everyone in our families and told them about it. My family (my parents and siblings) huddled around us as we all cried that very first day. My husband and I stayed on the phone for hours talking to my in-laws, trying our best to hold in the sobs that tore at our chests all day. And so, disclosure has never been a problem. There’ll be no cloak-and-dagger stuff with autism for us; truth to tell, my big mouth probably wouldn’t hold it in so well.

It was her husband’s idea, she said, to keep it in and hope that in a few years, no one will ever know he was “once autistic.” With his language blossoming rapidly in the year of speech therapy and his different preoccupations less persistent and less rigid, he was improving by leaps and bounds daily. But the secret weighed heavily with her, as relatives would often ask her about her son. Stumped for the truth, she would make up all kinds of excuses for Q’s current activities. She would create alibis for their time with the therapists, reinvent her descriptions of activities to include “normal”-sounding days, and keep her son out of their relatives’ scrutiny to hide the truth.

I did not wish to come between husband and wife, but I tried to convince her that hiding things will not make it any easier for their family. And despite many discussions of this theme till the day school ended, I was never able to change her mind. Before the year came to a close, she announced that Q had been accepted to an exclusive private school, where no one ever knew and would ever know that he is, or was, autistic. Then we said goodbye and I forgot all about her until the day she recognized me in the checkout lane of the grocery store.

I was very happy to run into her. We exchanged pleasantries and made small talk about our unfinished cross-stitched projects (she still has one from the late nineties, I have two). When I asked her about Q, however, a pained expression fleeted ever so quickly on her face. Then she laughed aloud, as if to cover up her embarrassment, and changed the topic. Later I saw her glance a few times over her shoulder to look in on a man and a much older couple. I pretended not to notice and we proceeded to talk about banal things while the checkout lane moved slowly. By the time she said goodbye, she whispered in my ear as she gave me a soft buss on the cheek. “They don’t know.”

Q must be 15 or 16 by now, and I wonder, in all those years, what they told him about himself. I really hope that he is as “indistinguishable” from his peers as they prayed he would be. It would be such a torment to wonder who and what and why he is the way he is without ever knowing the truth. To be “different” and not know why. To feel lost and not have any answers.

I used to think that people like my friend were rare in the world community of autism, the exceptions to the rule. I have met many fierce advocates of their children. And yes, we are a vociferous, vocal lot. And so, to run into more like her is deeply disturbing, yet at the same time, also heart-wrenching with grief. This takes our fight back to the days when the hush-hush mentality was the norm, when skeletons were hidden in the closet, and when prejudice ruled the day. Our only hope is that we can make our tooth-and nail fight for our children’s rights more public and more open as the days pass by.

But just recently, in another part of the world, the same question popped up: to tell or not to tell. In a Dear Abby syndicated column for the Arizona Republic on June 9), a family member posits this very same question.

~0~

Child’s autism kept secret
June 9, 2008 12:00 AM

Dear Abby:

 I have a beautiful 3-year-old niece I’ll call “Serena.” She is my brother “Simon’s” daughter. Serena is mildly autistic but has made amazing progress. We’re optimistic that she’ll be indistinguishable in a few years.

The problem is, Simon doesn’t want our parents to know about Serena’s condition. Simon thinks they would be judgmental toward him and would gossip about matters he would prefer be kept private. He might be right. But because he is keeping them in the dark, his relationship with them has deteriorated.

Simon has threatened that if I tell our parents about Serena’s autism, he’ll never speak to me again. Should I stay out of it or intervene? Is this kind of situation typical with families who have children with special needs?

Uncle With a Secret
 

Dear Uncle:

When a family member is diagnosed with a mental-health disorder, some families “circle the wagons” to hide it. While it’s regrettable, this is the path your brother has chosen. Not knowing your parents’ level of sophistication, I’m guessing he may be right about them and that he prefers to allow them into his daughter’s life only after her problem has become “indistinguishable in a few years.”

If you value your relationship with Simon, do not reveal his secret.

~0~

I have a mind to tell Dear Abby a thing or two, because in this day and age, I feel that “hiding in the shadows” is no longer an option. And while I may have some misgivings about labeling autism as purely a mental health disorder (which is deceptive and misleading, to say the least, although this term is still somewhat acceptable in light of its use in medical circles), I will have to pass on this issue for another time.

There is one central concern here, and this is the father’s acceptance of his child’s condition. That he feels he must hide is particularly revealing of his attitude towards his own child. That he takes on and uses his own biased judgment to predict others’ behavior towards this, that he decides for others what they feel or think or do without benefit of the doubt, is deplorable.

If I were Uncle With A Secret, I will encourage the father to come out in the open. Is he ashamed of the diagnosis? If so, then he must know, that autism is nothing shameful or disgraceful. Is it really just a case of wanting to protect his child from public judgment? Then, he must know, too, that in a world such as ours, we will never ever escape this, so why even bother to run from it? Face it squarely; celebrate your children’s strengths and never wallow in their weaknesses. And then, if this were a case of uncaring, unloving, petty, selfish, ignorant relatives, (of which I have had plenty of experience), then sever all ties with them and disavow them, but do not hide your child and his/her autism to please or appease anyone.Hiding in shadows

Autism should never be a secret, and in this case, if she were my niece, I will surely sit down with the grandparents and tell, regardless of the consequences of my relationship with my sibling. With love and support, children grow up believing in themselves. No child will ever thrive in the shadows; every one needs light and love to bloom and grow. And in the event that the grandparents are too ignorant to appreciate the blessing before them, then it is their loss, not mine, not the father’s, and certainly not the child’s.

Autism may have its heartbreaking moments, and this is true for all of us who live with it every single day of our lives. But it is also a landscape of learning, of exploration, and of wonder. It need not be a diagnosis of devastation. What it can be is what you and your family make of it. With love, acceptance, and faith, nothing is impossible.

2 Responses to “Secrets”

  1. amethyst_lover:kuririnmail.com Says:

    Well maybe in a way, keeping it secret will make it as normal as possible for her child? I don’t know :/ Or normal for them anyway :(

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