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Ali Family Autism Truths #25 – The Right of Choice

Ali Family Autism Truths #25 – The Right of Choice

Last updated on: April 25, 2015 at 7:17 pm by Dilshad Ali

Ali Family Autism Truths #25 – The Right of Choice 2015-04-25T19:17:49-04:00 Dilshad Ali

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D making choices for what he wants via his iPad.

April 25, 2015, Autism Awareness Month, Autism Truths #25

D brought his iPad to me just a few minutes back to request something to eat. We discovered something new with his ability to make choices a few weeks ago when he requested chips off his iPad – that all chips are not the same.

A few weeks back, he pressed the button for “I want” and then pressed “chips,” saying kippa to us (his verbal approximation of the word, chips). But when I presented him with a snack-size packet of Lays potato chips, he rejected them . He went back to his iPad and did the same thing again. But again, rejection when I offered Lays. Then I thought, ok, maybe he wants different chips. I pulled out a can of Pringles and showed it to him.

Ya, he said, and happily accepted a small stack of Pringles.

So we added a second step to his “chips” picture icon on Proloquetogo, the communication app he uses on his iPad. Now, when he pushes the button for “I want” and then “chips,” it takes him to another set of choices: a picture of Lays and a picture of Pringles. Eight times out of ten, he goes for the Pringles. Just like his Mamma.

The ability to choose for oneself is one of the most basic of human rights, I believe. We are born and nurtured by our parents, who try and make sound and safe choices for us, while learning our personalities, our likes and dislikes and what our preferences are. We learn, as we grow up, that sometimes we can choose what we want and sometimes we must acquiesce to what our parents tell us to do (like now, when my daughter is telling me she doesn’t want to go to the housewarming party tonight, but I’m telling her, too bad. You have too. You don’t have a choice in the matter tonight.), whether we like it or not. But eventually, as we grow into adulthood, our choices become our own, and we are responsible for the consequences of those choices.

To be able to make these choices and enjoy the outcome or face the fallout is a fundamental right of being human. Even in faith, we are asked to submit to the will and teachings of God. But ultimately, it is up to us to decide whether we choose to believe or not, whether we choose to listen or not.

As D grows older, it unsettles and worries me greatly that his ability to make his own choices is so heavily impeded by the profoundness of his autism. I worry that as he moves forward in life and if he lives elsewhere, away from me, others won’t make the efforts to suss out his choices like we — his family — do. As it is, too many things we decide on his behalf (making our best educated guesses as to what he is trying to tell us, what he may or may not want, and what will or will not work for whatever situation we are all in at the moment) — from what he wears to what he eats to how much he eats and a million things in between.

To be sure, his brother and sister’s choices are often dictated by us as well. But let’s be honest — they are able to finagle their way with us at times, and certainly they are able to request things they want me to cook for dinner. Our daughter “A” certainly has reached the age where she is quite opinionated about what she wears and the clothes we buy for her. And I give D choices as well in what he wears, how long he may want to shower and so on. But it’s not the same. It’s just not.

And, the price of not knowing D’s choice or his feelings is often too great. Making parental decisions though we see what his choice or preference may be, because we think it’s something he still needs to learn how to do or something he needs to get used to (as it is with the decisions so many parents make for and with their children), can come with an unbearably high price — if we get it wrong.

And we have gotten it wrong in the past. That kills me.

I want D’s choices to be known and honored in the best ways possible. I want him to have his fundamental right to choice, as much as possible. Today we start with recognizing that he wants to choose between Lays and Pringles, and figuring out how facilitate that choice. Tomorrow we hope for more.

The truth is, it is our fundamental job as parents to never underestimate his ability to make choices or decisions. It is our fundamental job as parents to make sure everyone in his life doesn’t underestimate it either. Because being autistic, no matter how profound, doesn’t mean he loses his right try and choose the paths, minor and major, of his life.

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