Autism


ā€œWash your hands for dinner!ā€

Drew comes toward the sink and then takes a step back.

ā€œMom.  I canā€™t.ā€

I look at the faucet, covered in soap suds.

ā€œHang on,ā€ I say, liberally dousing it with water until the bubbles are completely gone.  ā€œThere you go.ā€

He steps up to the sink and washes his hands.

Bubbles.  He canā€™t even stand the word.  The sight of them makes his stomach twist.  He forces himself to tolerate hand soap, but prefers hand sanitizers that donā€™t create suds.  I shudder to think about how he washes his hair ā€“ or doesnā€™t.  There was a time when I would have tried to understand ā€“ tried to rationalize it for him.  Theyā€™re just bubbles.  He likes clean things ā€“ whatā€™s cleaner than a soap bubble?

I donā€™t do that anymore.  Iā€™ve learned that sometimes itā€™s best to jump on the spectrum with him.

How can I say that?  Isnā€™t drawing him toward a typical life view the best thing for a kid whoā€™s so ā€œhighā€ on the spectrum that his diagnosing doctor ā€“ ironically ā€“ described him as ā€œjust inside the bubble?ā€

Yes and No.  Yes and KNOW.  Iā€™m learning to walk that line; Iā€™m learning to know when to accept and when to push.  Desensitizing him to sensory problems works best very slowly, at his own pace ā€“ not mine.  Iā€™m learning to accept that Iā€™ll never do it perfectly ā€“ that Iā€™ll have good days and bad days.  Just like him.

With autism, we live in two realities, with two cultures in our house.  I canā€™t let go of one, even while I cling to another.  I have always known this by instinct, but didnā€™t know how to put it into perspective until recently, when I was inspired in an unlikely way.

My niece, Lisi, became an American citizen just over a year ago.  It happened the moment she passed through customs at San Francisco International Airport.  No fanfare; no oath.  Still, the core of my patriotic heart sings anthems when I imagine that moment.  My sister put her on the phone with me that day.  I cried as I listened to her sweet voice, bubbling over the line in rapid-fire Chinese.  Already I loved her.  Already she was my family.

My sister and brother-in-law spent two weeks in China finalizing the adoption that had taken almost two years to achieve.  On Gotcha Day and at the courthouse, there was fanfare; there were oaths.  A week before Lisi became an American, her parents became Chinese.  Itā€™s a custom in China:  if you claim one of their children as your own, the Chinese people claim you too.

That custom is more than just a nice sentiment; itā€™s an overt acknowledgement of something that happens in the heart of a parent.  Lisi will grow up as American as you and I.  Sheā€™ll wear American clothes and speak English with an American accent.  Sheā€™ll wave a flag on the Fourth of July, learn her states, learn her presidents.

Sheā€™ll also always be Chinese.

In a perfect society, paradoxes of race and culture would never create problems, only opportunity. But we see it all the time:  kids who donā€™t feel like they fit into our world, kids who fit into two worlds.  Sometimes we feel those difficulties almost by instinct. Sometimes we donā€™t.

Imagine that Lisi is with her mom at a park shortly after arriving from China.  Sheā€™s playing in the sandbox with another child, whose mother comes to sit by my sister on a bench.  After a few minutes of listening to Lisi chatter happily in Chinese, the mother turns to my sister as says:  ā€œMaybe she should make more of an effort to speak English.ā€

That wouldnā€™t happen.  (Youā€™re thinking it; Iā€™m saying it.)

Hereā€™s what would happen, though; hereā€™s the kind of thing that HAS happened:

Iā€™m at a social gathering and my son is standing awkwardly to the side while others his age joke and laugh.  They run and toss a Frisbee, stop to pet a dog, grab a soda, talk to their parents and then rejoin the conversation of their peers, never out of step.  Iā€™m talking to another mother and make a casual comment, wishing my son could join in their fun.  ā€œMaybe he could make more of an effort,ā€ she says.

She might as well suggest that he speak Chinese.

People donā€™t mean any harm, but sometimes they forget.  Drew looks typical.  I hear it so often:  I canā€™t even tell he has autism!

Itā€™s a blessing ā€“ I never forget that.  Heā€™s likely to function in our world without as many struggles and obstacles as he might have had.  Heā€™s likely to communicate with people who think heā€™s just slightly different, never suspecting thereā€™s a label, a diagnosis for what they see.

But there are also those who KNOW he has autism, but expect him to act like he doesnā€™t.  Theyā€™re confused by his intelligence.  Theyā€™re confused by his ability to talk knowledgably about favorite topics.  Theyā€™re confused because heā€™s done such a great job of overcoming fears, learning to deal with the unexpected ā€“ fire drills, changes in routines, random noises, unfamiliar flavors.

He does so well, that people forget ā€“ and then they get frustrated when his autism starts showing.  They get frustrated when he doesnā€™t move quickly enough, when he gets anxious, when he has to be told twice.  They get frustrated when he doesnā€™t remember, or when he remembers too well.  They get frustrated because heā€™s so honest ā€“ (all I can say is, if you ask someone with autism a question, donā€™t expect him to tell you anything other than the truth!)  People get frustrated when he doesnā€™t laugh at their jokes, when he doesnā€™t like their nicknames or their relentless teasing.  They donā€™t like it when they ask: ā€œHow are you?ā€ and he doesnā€™t respond quickly enough.  They think he should know how to shake hands, maintain eye contact, catch a football, ride a bike.  They know he has autism, but they have a hard time remembering that itā€™s a real thing ā€“ not just a label.

It breaks my heart.  My son tries so hard every day and heā€™s still getting, ā€œNo, youā€™re not quite normal enough.ā€

I canā€™t imagine someone asking Lisi to abandon her race ā€“ to completely reject her culture and pretend to be white.  And the thought of someone treating her as if sheā€™s somehow less of an American because of her race or culture also makes me livid. I know her parents feel the same way.

But will Lisi always understand this fierce loyalty we feel toward her ā€“ will she ever doubt that she is wholly Chinese and wholly American ā€“ and that this is just how it should be?

I hope the fact that her parents are Chinese now too helps her understand how fully and unconditional their connection is.

Drew and Lisi
And that is why Iā€™m jumping on the spectrum.  Iā€™m a typical parent ā€“ and I want my son to live as much of his reality as possible in a typical world.  Iā€™ll hold the bar as high as I can and Iā€™ll be a patient cheerleader.
But heā€™s always going to have autism ā€“ and so Iā€™ve decided that I am going to be autistic too.  Iā€™m never going to demand that he be what he canā€™t.  Iā€™m never going to ask him to pretend, or hide his personality quirks.
I will be honest and I will let my own personality quirks show.  I will not pretend to be something Iā€™m not.  I will learn to back off when he needs space but I will always be there when he needs me.  Autism will never embarrass me.

I will be his advocate.  I will be a fierce mama bear.  And I will be on the spectrum with him for as long as I live.
  


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