Autism, Perception, Reality and Glass Houses

I remember being in the doctor’s office.  My daughter was there, and so was my husband.  Our pediatrician was also in the room, which was uncomfortably small to begin with let alone with four people sardine-canned into it.  My daughter was on the examination table, and my husband was talking with the pediatrician.  I was half listening and fully trying to make sure my daughter stayed on the table, because the last person on earth in front of whom you want to fail the Parent Test is your kid’s doctor.  My daughter was upping the ante on me, because she was wicked pissed off at both the texture and sound coming off the paper protector topping the examination table, on which she was sitting more or less naked.  How’s that for foreshadowing?

Then, you know that moment in films — usually of the horror variety — when the victim looks down the hallway for an escape, but the walls suddenly slide in and the hallway narrows into an abyss with no clear exit?  That scene was not the product of some special effects master’s imagination.  That, my friends, really happens when you hear or see something that scares the sugar honey iced tea out of you.  I know, because that is precisely what happened when I heard the word “autism” come out of the pediatrician’s mouth right next to my daughter’s name.  Claustrophobic took on a whole new meaning.

I had this moment more than a year ago.  My daughter was not quite three when she was diagnosed.  In the interim, we’ve been to classes, workshops, counseling.  We’ve researched everything we could find, enduring the frustration of separating the good information from the bad — the evidenced-based information from the hysterical reaction pieces.  We read about other parents’ heartaches as we endured our own.  We’ve enrolled our daughter in school, and we are so very, very fortunate to have her in a terrific Autism-specific classroom near our home.

Despite all this forward progress, however, there is something with which I struggle and am continually amazed:  how everyone else reacts to a child with Autism.

There were people who disappeared from our lives soon after they heard about the diagnosis.  On one level, I understand this reaction.  They understood the diagnosis was not welcome news, didn’t know what to say, and didn’t want to put a foot in it, so they bolted.  Totally get it, especially from people we knew only casually.   But, it was unsettling when people we knew well were stampeding over the casual-acquaintances to get out of Dodge.  As much as it hurt in the beginning, I’m somewhat relieved about this now — better to know up front that you can’t rely on someone than to allow him or her to bring down the house of cards that is the daily life of a special needs parent.  Support system ain’t no joke in this town.

Then there are people who are aware of the diagnosis but approach my daughter as if she’s neurotypical (NT) anyway.  That sounds lovely, except it’s premised on this “logic”:  she looks “normal,” she’s cute, she smiles a lot and she lets her parents and brother touch her, so she should act the same toward everyone else.  To these folks I say: she can’t.  She can’t act toward you the same way she does toward someone else or even the same way she acted toward you the last time she saw you.  Yes, I know last time she was passing out high-fives and hugs like a politician at a town hall in an election year.  But, often (and there is no predicting it), she can’t look at you while you’re talking to her, because that interaction requires way more sensory input than she can handle. She can’t answer your question, because she simply lacks the verbal capacity to do so.  My daughter’s brain works so hard to translate “How old are you?” from sounds into words, it’s nothing short of a miracle when she also processes the meaning and says “four.”  And, no, I’m not a bad mom because she can’t sit nicely in that chair.  My daughter needs occupational therapy to help her sit still in a chair at school, which is a highly controlled environment, so it’s definitely not happening at [insert strange place full of unwanted stimuli].

There are also people who assume that Autism and cognitive intelligence are inextricably intertwined.  They realize my daughter has memorized the entire screenplays for A Bug’s Life and about 15 episodes of Wonder Pets, including pauses, intonations and gestures, and then refuse to believe she is physically unable to communicate or interact socially with others.  To these folks I say:  Autism is very real, she isn’t going through “a phase” and she isn’t “acting out.”  In fact, my daughter’s intelligence only makes your behavior toward her more painful, because someday (if not now) she will understand what you say about her, she will recognize the social inappropriateness of her behavior, and she will be wholly unable to change it.  Stop for a minute and ask yourself how you’d feel if this was your reality.

I have the hardest time with this response to my daughter.  My brain tells me I should seize these moments as learning opportunities for whomever is getting in my daughter’s dish, because that’s what’s best for my daughter in the long run.  But my heart cannot take too many more of these encounters before it acts faster than my brain.  So, to these people I also offer this advice:  open up that Google-thingy, do a little reading, and stop talking about my daughter like she’s a spoiled toddler who can’t understand what you’re saying to her.  She isn’t, she does, and I am a professionally trained verbal-dress-down ninja with laser-like aim and an itchy trigger finger guided by a mother’s instincts.

It’s amazing how living with a child on the spectrum changes your perspective.  I will never walk through a store or sit in a restaurant again, glaring at the parent whose kid seems out of control, full of judgment and such certainty that I would never allow such behavior.  Ha!  Now, I look at the expressionless parents of the child thrashing on the floor in full-on-fit mode in the middle of Target, I immediately recognize the sleep deprivation written all over them, and I send up a silent prayer that they make it from there to the car without enduring some self-righteous jerk’s insults advice.

I wish there were no Autism Spectrum Disorders.  But, until that’s possible, I wish that the lady glaring at me in the grocery line because my daughter still carries a blanket or wears pull-ups had to live a minute in my skin – or better yet, my daughter’s.  If I’ve learned anything from this experience, it’s that you never know when that fortress you’ve built around your aura will turn into a glass house.  Life has a funny way of making that happen, and you probably don’t want to be caught standing there in your living room naked and holding a big ol’ rock when it does.

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It's boring when I do all the talking around here. Speak now, while you can get a word in edgewise.

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