*Head + Desk*

16 Apr

I was at a meeting with a group of autism parents the other day, getting ready for the 12th National Conference, of which we will be part of. I mentioned that I wasn’t sure about showing videos of Alphonse at his worst. It was too graphic, too close to home, and too intrusive on Alphonse’s life and on his person.

Someone said, “At least he won’t know and he won’t care,” trying to reassure me. The remark was not meant to be deprecating, I am sure, but it carried with it the implications of my son’s “low-functioning” diagnosis. I know where she’s coming from; her child belongs on the opposite end of the spectrum- bright and able, more concious and definitely more self-aware. I do understand and it’s easy enough to make that assumption, not really knowing how the other side lives. On the flip side of things, many people with children with autism have this misconception that compared to theirs, the lives of people with children in the higher end of the spectrum is a breeze, and likewise, this is a totally unfair assumption to make.

But I digress. The problem was not in what she said; the problem was my reaction to it. In an unprecedented STUPID moment (and I capitalize and put it in boldface to highlight the gravity of this stupidity), I concurred. And then, having agreed with her, I wanted to take back what I said right away. But I didn’t. I held my tongue. I’ve been hitting myself over the head over and over again since then.

Thus, this post.

The truth is, Alphonse, in his own way, does know and care. Perhaps to the unseeing eye, he can be passed off as mentally deficient and lacking in so many cognitive abilities. But even with his mental disabilities, this does not take away the fact that he is a deeply feeling individual. Autism, especially the severe form, does not necessarily equate to “manhid” or uncaring/ unfeeling. Buried beneath the stereotype of a “person living in his own world” is a person, period.

I am always sensitive to how people perceive my son, though I have to admit that there are times when good judgement escapes even me. On one hand, I often paint a picture of a person who needs us 24/7, and that would be the truth. But on the other hand, I would also like people to know that Alphonse certainly exceeds our expectations of his societal-defined abilities.

Although he is unable to speak or communicate well through other means, his comprehension is more than what people give him credit for. He certainly understands more than he lets on because he surprises us when we least expect him to. He listens even when he does not appear to, and is keen on the emotions of other people. How is it that he gets emotionally affected when another child gets angry or hurt? If he were the empty shell people like to think he is, then someone else’s pain or joy would not matter at all to him. But how come overt rejection is met with anger? Why does kindness evoke a smile, even a kiss, from him?

The problem is not his inability to understand and feel, I think, but more of his inability to take in social cues all the time. I suppose if you were constantly having to drown your other senses- the intense itch of cloth on the skin, the buzzing sound of the fan, the flapping of the leaves of the tree, the chatter of other people, the constant visual movement in the periphery- to make sense of things, then social cues are the least of your problems. Unfortunately, this is often perceived as a lack of self-awareness and ultimately, a lack of intelligence.

Am I worried that Alphonse would get mad if I show his videos? Not really. I worry more about me and how I fulfill my responsibilities as a mother to him if I show disrespect for the person that he is. As such, I always try to measure my actions through my other son’s perspective: if I will not do it to Alex, why should I do it to Alphonse? Why is the respect accorded to him less just because he has autism?

In the end, it’s so much easier to err on the side of what is human and humane. If we, as a family, Alphonse included, decide to show even just a few clips from his videos, I hope he understands that it does not mean we do not care for his feelings or his opinions. We will try to make him understand that we will do it to help others who are feeling the same way, who are experiencing the dark tunnel we went through last year. “We got you back, Alphonse. We were lucky,” I will tell him. But some others just may not be.

6 Responses to “*Head + Desk*”

  1. Manggy April 16, 2012 at 10:52 pm #

    Well-meaning as she may have been, your colleague has a dangerous attitude and it needs to be reevaluated. Regardless of whether Alphonse knows it or not, his dignity should never be in question. The only question to be asked of you, as his decision making surrogate, is if he would agree had he the capacity, for the possible benefit of other families dealing with autism. My guess is he would probably not mind, especially if you don’t. But “he won’t know” is never an acceptable statement.

    • Kittymama April 17, 2012 at 11:24 am #

      I love the way you put it, Mark, and I agree. I should have said so right at the start, but I dropped the ball on that one. I am still so sorry about it now. But yes, when we start believing that “he doesn”t know and doesn’t care,” we demean his dignity as a human being.

  2. adicayaban April 17, 2012 at 9:29 am #

    Why do i think that the person who said “at least he won’t know and he won’t care” IS stupid?

    • Kittymama April 17, 2012 at 11:27 am #

      I guess it’s hard for anyone to know what it really is like, unless you actually live with it every day. Even if that person made a mistake, I think I did a bigger disservice to my son by not defending him right then and there. It’s one of those gulty moments I will have to live with, and hopefully, do right the next time the same question comes up.

  3. leira April 18, 2012 at 8:43 am #

    You hit the nail right on the head so to speak. But sometimes I’m guilty of saying na buti nga sya Aspergers.. I also remember telling someone from ASP don’t just focus on the poster kids like the intelligent and talented kids. Focus on the other side of the spectrym kasi mas kailangan makitan nang iba na there’s another side.

    I also realized na kanyang kanyang challenges talaga ang magulang na may autism di porke on high functioning wala nang stim, saka I don’t believe in the word recovered from autism di naman kasi sya flu..

  4. Mona May 2, 2012 at 7:28 am #

    I envy your honesty and insight!

    Mommies of kids on the higher end of the spectrum, like me, have a totally different set of challenges. The quiet anguish and the “bugbog” from the social hiccups are there nonetheless. There’s that “neither here nor there” dilemma. But that’s beside the point.

    When we are among our peers in the autism organization, your post made me question motives. Are we there to help? Are we there to speak of our experiences so that others can find hope? Or we there to feel better about ourselves because for once, after years of being found wanting by the harsh world, our kid “comes out on top” by comparison? Sana hindi yung huli.

    The organization should be our haven, our respite from people with no compassion. What you felt should not have happened — not there. ((Hugs))

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