There is one aspect of ASD that separates itself from other diagnoses, it can mask itself when in crowd. Gabe is indistinguishable from his peers. He does not have any physical differences, is somewhat social and imitates play well. His differences are hidden. It is a moment at the playground when I get a painful glimpse of what Gabe would look like as a child without ASD. An NT child. Someone who would play endless imaginary games of being giraffes in the desert with Boo. A brother that would be able to play more than just chase, but would help build a tent in the playroom and read stories with Boo by flashlight. I am writing about the taboo subject of deep down wishing Gabe was NT. Who would wish ASD on anyone? I saw first hand how utterly painful it was for my brother, who has ASD and is 4 years older than me, try to "fit in" and understand his peers. His peers showed no mercy. They were first to point out his differences, segregate themselves from him and make his school experience very lonely and scary. He was "on the mild side" of ASD. Maybe that was part of the problem. He appeared "normal", so people wondered why he was "so weird".I am fearful everyday of the many obstacles Gabe has ahead of him. It would be a wonderful world if we could educate enough that the majority of the population would be able to embrace everyone with differences. The world does not work that way. It doesn't.
I have a hard time understanding people who spend relentless hours trying to disprove any step that researchers are using to move forward and understand ASD. ASD is a disorder not a lifestyle choice. Disorder by definition means lack of order or regular arrangement. Gabe has a neurological disorder. His thinking, especially when it comes to language, has a lack of order. It is askew. He is not choosing to be this way. He agonizes over how to tell us he
is hungry. He does not know how to tell us he is sick, or hurt or angry. I'm tired of the political correctness. Mercury? No mercury? Stimming? No stimming? Celebrating a young man with ASD scoring numerous points in a basketball game? Should I have rejoiced? No? Is it wrong that it warmed my heart to see a success where my son may never succeed? Some say he just wanted to be a person, not "someone with ASD". What about those with ASD that will never just be able to be a face in the crowd? Where being just a person is possible and that overshadows their ASD? I go back and forth on whether or not to blog anymore. I feel censored, stifled. I also feel like, as a parent of an ASD child, I am the first that people point fingers at if I do too much (ABA=BAD) and if I do too little, I'm in denial. Let's take a moment,for once, to acknowledge those other than the person that has ASD that are affected by it. Remember, when rain falls, it is not only one person that gets wet.As the time passed today at the playground, the kids started to mingle. One little girl sat next to Gabe.They exchanged smiles.When he started to speak to her, you could see the confusion in her eyes.
"Why is he talking like a baby?" I was asked.
"Because he is just learning to talk." I said smiling.
She looked back at Gabe, then got up to find someone else she could play with. That's when I wonder if the physical normality of ASD is more hurtful than helpful. It pains me to see Gabe so close, just to lose the connection just as fast.
Gabe's ASD has not been truly tested in the outside world, being that he is not even three yet. He is either with us or at a school that specializes with working with children who have ASD. There are very limited opportunities for the outside world to penetrate the safety and secure zone that we have created for Gabe. We have not had to deal a lot with the uneducated opinions and stereotypes. Those will soon follow with his entrance into school , as he grows older and the responsibility of understanding the world and the weight of it falls more heavily on his shoulders.
ASD is not a "way of life" and it is not a "death sentence", but it is a disorder. Let's call it for what it is.
