I am the parent of a young adult with Autism. I’m patient. She’s helped me build that patience. But if you are a parent of a young child with Autism and you leave me a comment giving me advice that basically would reinvent my wheel, so help me God, I will reply and make you cry.
I have been dealing with the explosive outbursts, Autistic meltdowns, sensory overload, overstimulation on low pressure days, tactile issues, noise issues, overpowering scents, obnoxious gestures and flight or fight reactions for well over 20 years. I got this. I’m not perfect. But I get HER. And as my friend, Cindy, says all the time, “When you know one person with Autism, you know ONE person with Autism.” Cindy would know. She’s been a teacher for about 13 years, 8 of those with Special Education. She’s so right. If you intellectually know that every person WITHOUT Autism is a unique individual, then WHY can’t you get that about people WITH Autism?!
Do I seem shout-y and intolerant? I am. I am tired of the looks and the stares and the rude remarks and the presumptuous (albeit well-intended), unhelpful advice from people with ZERO experience with MY kid.
I am one of those parents who, until today, thought that Autism Speaks and other Autism awareness organizations do little to help those of us in the trenches of this nonverbal disability each day. I do not have a puzzle piece bumper sticker or a blue light bulb for the once a year “Blue Out” that some of my other friends put on their porch light. I didn’t “GET IT” until this morning.
While these organizations are working on research to help us understand causes and work on better interventions for Autism, they aren’t really a helpful “go to” resource for parents of older people with Autism who are still hoeing that row for those that follow us. I’m not at all suggesting that my 21 year old daughter is a pioneer for the AU crowd around here. But I’m telling you that the reactions that she has are less accepted of her than they are for someone with similar disabilities who is 5 years old. And most of us with older kids/young adults are figuring it out as we go along…JUST LIKE ALL OF YOU WITH THE ALLEGEDLY NORMAL KIDS.
Here is the thing, “Normal Parent:” YOUR kid will one day actually listen to your advice. He will get to do all the “normal” developmental stuff and “normal” school and break the “normal” rules, maybe even getting suspended once in high school for the “normal” prank or fight in the gym. He’ll graduate from the “normal” or even AP classes and go to a “normal” university or college or trade school. If I’m lucky, MY kid might work at Target bagging groceries and won’t get put in handcuffs by the cops when she’s fighting to run away from them after they’re called because she is screaming that the music is too loud.
But you know what? “Normal is just a setting on the dryer!” (That’s another of Cindy’s catch phrases that she uses on me almost weekly, as she talks me off another emotional ledge.) And the need for organizations like Autism Speaks, is to help the “normal” people, like you; To assist you in understanding that not everyone is physically ABLE to understand your social cues and common courtesies that, when you think about it logically, really make very little sense at all. Since when does “Excuse me,” translate to the rest of the world as “Step aside quickly. I want to push past you?” It is actually just a catch-all phrase that is “said politely in various contexts, for example when attempting to get someone’s attention, asking someone to move so that one may pass, or interrupting or disagreeing with a speaker; or said when asking someone to repeat what they have just said.” (**according to Bing’s definition.)
So when we are paying for our cup of hot chocolate at the 7-11 and take that entire extra 2.6 seconds to place 25 cents change inside a purse and zip it closed before attempting to leave the store, the words, “Excuse me,” have little meaning to my Autistic daughter. The old hag who shoved past her while saying them meant, “I’m an impatient old bat in dire need of lottery tickets and another pack of cigarettes. Now move your ass!”
So, now that she has been pushed and hurried, she is holding her hot chocolate in one hand and my hand with the other. As we attempt to exit the store, a young man grabbed the door handle and swung it open widely. But instead of waiting for us to step through it, he pushed into me as he tried to squeeze past, causing me to bump into my daughter, which caused her to spill hot chocolate onto her hand. THEN he had the nerve to be upset when she screamed from the burn on her hand and turned around and shouted, “YOU FUCK!” at him. He started to argue but I said, “She has Autism….she doesn’t mean,” and then I stopped myself. You know what, old hag at the counter and boy who can’t wait for 1 second to enter a store before the doorway is cleared? She’s right. You ARE fucks.
Autism awareness organizations are around because YOU “normal” people are too ignorant to recognize disabilities that are not glaring in your faces. How many “normal” people walk around 7-11 wearing gun range headphones to cut down the noise around them?! OBVIOUSLY, there’s an issue there and this person doesn’t fall into your definition of “normal.” Do you ordinarily push past the guy with the white cane because he’s taking an extra second to get through the door he can’t see? What about the people who are speaking in sign language to one another? Do you get pissy and shove past them when they don’t hear your lame “excuse me” at the check out lane?
Patience is something that everyone could use. Do I sound impatient? Well, I am. But this is due to YEARS of having complete strangers walk up and “shush” my kid who is screaming because the lights are too bright and some assistant manager decided to crank up the music playing on the PA system at the grocery store. I will maintain my usual demeanor, most days, in public but I will no longer apologize to people for my daughter’s outbursts when 9 times out of 10 they contribute to them. Just because she cannot verbalize what is bothering her does not mean that she is out of line for feeling bothered. Attempting to understand why someone is upset is a sign of maturity.
I’m not expecting the world to bend over backwards and allow the AU crowd to do whatever they want whenever they want. All I’m asking is that you take a second before reacting to their Tourette’s-like responses and decide whether that person is in crisis. Sometimes it’s truly just a disability.