“There’s nothing wrong with her. All kids do that!”
I cannot tell you how many times I heard those words, when my daughter was young. The phrase never died. As she grew older... it just morphed.
Look. It’s hard enough, okay?! It is hard enough accepting that your child struggles in ways that you have no control over... in ways that you cannot “fix.” As a parent, we want our children to be happy, successful, comfortable... all of the good things. When that is not happening, we feel bad. We, often, seek support, by talking about it. Especially, when we have no idea what to do. Like calling your mother, a sibling, or a friend when your baby won’t stop crying. We reach out for help.
I get that human nature is to want to say things to try and help the person you are talking to feel better, but I am telling you... minimizing the challenges that a child on the Autism Spectrum faces DOES. NOT. HELP. THEIR. PARENT. If anything, it makes it harder. Acceptance is key!
Think about it. What is the first step toward change? Acceptance. Accepting that there is something that needs to change. Does an Autistic child need to “change?” Absolutely not! However, parents and others around an Autistic child need to change their thinking, in order to accommodate the limitations and challenges that a child on the Autism Spectrum faces, on a daily basis. When someone in that child’s life refuses to accept that the child has limitations, in the first place... how is that helpful?
So, here I was with a diagnosis, for my daughter, on the Autism Spectrum, and the majority of the people around me refused to accept it. Why? Because they couldn’t see it. Why? Because they either didn’t pay attention, or didn’t want to see it. Because “seeing it” meant “accepting it,” and ”accepting it” meant that they were accepting that there was something “wrong.” Well, guess what... there was.
I know that this post is delayed, and I know that this post was supposed to be about a brilliant Autism Specialist, an amazing Kindergarten Teacher, and some funny experiences that taught me how to effectively communicate with my daughter; however, I feel the need to address people’s resistance to acknowledging and accepting that a child has been diagnosed with a high-functioning Autism Spectrum Disorder first... because it was at this point in my daughter’s life that the acceptance of others could have made life a little easier for her... and me. I will get to the promised topics. We are just going to take a little detour.
I really meant to write this before the holidays, because the holidays are such a difficult time for my daughter. They have been all of her life, but... well... time got away from me. I am, actually, okay with that. It is all still relevant, and maybe, now that the holidays are over, people will have more time to really read and absorb my message.
That whole “acceptance” thing? Other people’s lack of acceptance that my daughter has an Autism Spectrum Disorder really plays out around the holidays. Even now, as an adult... ”adulting” the best she can... other people’s lack of acceptance just adds to the difficulties that she experiences from early fall through the New Year. Allow me to explain what that time of year looks like for her:
When she was still in school, it looked like this: She had just gotten used to not having the much needed routine of going to school every day, when BAM!... it’s back! New teacher(s), new rooms, sometimes an entirely new school building. A lot to adjust to... a lot to take in. Then, just as she was starting to get her feet back under her... BAM!... Her birthday is in early fall. It is exciting. It is fun. She gets presents. She looks forward to it immensely! But... even good things can be stressful and overwhelming. For my daughter, looking forward to something exciting can send her into an emotional spiral that can be likened to a mini nervous breakdown. So, we would make it through her ”birthday season,” and start to settle back into the school routine, when BAM!... Thanksgiving and a long weekend, usually involving travel and large family gatherings, full of loud talking, celebration, other children. All good things, right? Not for my daughter. Here we go, again... another break in routine, packed with overstimulating noise, people she did not know very well (many of whom denied her diagnosis), and the expectation of many family members that, if she wasn’t participating or playing with the other children, she must feel left out. Quite the contrary. She was trying to save her own sanity, by disappearing and finding refuge in a quiet back bedroom somewhere. So, the Thanksgiving excitement dies down, but what happens the day after Thanksgiving? Christmas! Christmas advertising. Christmas decorations, where she normally expects consistency. I learned my lesson the hard way, when it came to decorating our house. I decorated, one night, after she had gone to bed. It included moving furniture around, in the living room, to make room for the tree. She nearly lost her mind, when she got out of bed, the next morning, and went into the living room. “Mommy! What’d you DO?! MOMMY! What’d you DO?!” I never did it again. So, after Thanksgiving, the ”BAM!” is immediate. And, the overstimulating activities and overwhelming changes in routine just carry on... for a solid MONTH! Then, the BIG BAM!! Christmas Vacation!! School is out. No more routine. More family gatherings. Everything is nuts! The anticipation of opening presents, that have been teasing her for a few weeks, already. So, are you thinking, “It’s like that for all kids,“ right now? Don’t you dare! Do not miss this point. Yes... all children deal with the anxiety of waiting to open presents, family dinners, etc. But, think about it... think hard about the characteristics of Autism. If you ever want to really understand how a child on the Autism Spectrum feels about the holidays... take what you know every neuro-typical child to experience, during the holidays, and magnify it by about 1000 times. I’m not kidding... at least 1000 times. Now... think how annoyed I imagine you might be, right now, at the length of this ridiculous run-on paragraph. I’M annoyed writing it! My high school English teacher would have flunked me! But, my paragraph is part of my point. It just goes on, and on, and on, and on, and on... like the holiday season does for my daughter. But, she doesn’t show it. She does not, typically, act out. She introverts. She goes into her shell. She masks her disability and puts a smile on her face. And, because she does that... as she has her entire life... people do not see the struggles she is enduring. It takes my daughter well into the month of February, typically, to settle back in to her normal routine... to regain her learned ability to make eye contact... to be able to sleep at night... to not melt down or introvert at the slightest change... to be able to escape the ridiculous run-on paragraph of that time of year.
No. All kids don’t do that. Not to that extreme. Please stop saying that. Educate yourself. Observe to see what is really going on in the mind of a child, or an adult, on the Autism Spectrum. It’s not hard to see “survival mode.” All you have to do is pay attention, and be compassionate.
I appreciate a human’s nature, to want to find the silver lining... to want to ease the pain, but refusing to acknowledge the challenges that exist does not ease pain... it inflicts it. If a parent of a child on the Autism Spectrum describes something their child does that presents a challenge for that parent, and that child... please, please, please take them at their word. Be compassionate and understanding. If you feel so inclined, ask if there is a way you can help. Maybe, just maybe, their talking to you about their child’s challenges is a cry for help.