What I Would Change About “High Functioning” Autism

I cringe when people say, “You’d never know your daughter has Autism”.  Some days I wish our lives weren’t impacted by Autism at all.  Some days I wish her Autism was more obvious.  I know that sounds crazy, but it is true.  If her disability impaired her more regularly, more consistently, in more severe ways, I feel our home would have more predictability.  I feel I would have a stronger grasp on what to expect from her and how to help her.  Instead, this magical mixture of typicality, high intelligence, intense creativity, intense emotion, sensory processing impairment, language impairment, fine and gross motor impairment, amazing wit and humor, phenomenal long-term memory, horrific short-term working memory exists within my daughter.  And I never know what magical mix of these traits will show up in any given moment.

Take this afternoon, for example.  KBear, Cub, and I were playing Qwirkle.  (which, by the way, if you’ve never played you really should run out and grab one!)  All was well.  All was more than well.  We were joking around.  Taking turns.  Actually having fun.  KBear was patient.  KBear was being strategic.  KBear was trash-talking and accepting trash-talking like the best of ‘em.  In hindsight, it was probably the next thought that jinxed us, but I thought to myself, “wow.  This is really fun.  Things are getting better and maybe we’ll actually be able to have family game days without any meltdowns.”

Within 3 minutes of thinking that thought, KBear started talking in short 2 word toddler sentences and squirming around on the couch.  There had been no forewarning and by the time these symptoms were showing themselves, she was already resistant to my attempts to help her reset.  2 minutes after that I was sequestering her in her room, only to find that this particular meltdown was leading to her room being trashed – lotion all over the floor, crayon drawings on the walls.  Sigh.

And I didn’t see it coming.  Usually I see it coming, but even when I see it coming, her ability is so drastically different from one moment to the next that I suffer cognitive whiplash trying to keep up and adapt my interventions and expectations accordingly.

It is so difficult to have a deep, philosophical, or hilarious conversation with KBear and witness her brilliance and then have all that hijacked by a different version of KBear who can’t string sentences together, has glazed over eyes, is making wild noises and body movements, and is often aggressive and completely out of control.  It is so difficult to know that the child who cannot follow directions and needs help putting her pajamas on was transforming random household supplies into real-looking medical equipment for her baby dolls just hours earlier.

I struggle to adjust my own mindset.  I struggle to give her the help she needs when she needs it because oftentimes she is capable of much more.  I struggle to challenge her mind and push her because oftentimes she is capable of much less.

And so, I longingly (and futilely) wish her disability wasn’t “mild.”  I wish her abilities were a bit more consistent.  I wish every day looked relatively the same so I knew what to expect.  I wish her disability required more of the hands-on cares all the time instead of only sometimes, so I would know how much time to carve out for the schedule every day.  I wish her physical disabilities were more severe so she wouldn’t be capable of the physical aggression she exerts toward her family when melting down.

Sometimes I wish these things. 

Other times I wish her disability was “milder”.  I wish her meltdowns were more temper-tantrum-like.  I wish that she could consistently dress herself, make decisions, engage socially, try new foods.

Most of the time, I’m a bit more realistic and am grateful that I don’t have to encounter the daily grueling tasks of parenting children with different abilities than my daughter’s.  And all of the time I realize that I have a lot to be grateful for and that my childish wishes do not have the faintest idea of the realities of life with a consistently disabled child.  Nor would her functioning on a “higher” level alleviate all challenging behaviors or times of mommy burn out.

I do fully acknowledge that wishing these things is a ridiculous waste of time.  I realize that her abilities are not within my control.

And so, on my good days, I spend more time focusing on the things I can control.

I focus on building my own mindfulness.  To be fully aware of the present moment without comparing it to previous moments.

I focus on building my own radical acceptance.  How she is wired is how she is wired.  There’s great things and not so great things about that.  And at the times when she’s capable of being challenged and engaged, I attempt to radically accept that in this moment I can connect with her deeply.  At the times when she’s capable of making noises and wandering aimlessly around, I attempt to radically accept that she needs me to mother her as though she were a toddler.

I focus on building my own self-nourishing routines.  The less filled up I am, the more rigid I am and the less I can simply ride the waves of whatever her current abilities are.

I focus on gratitude.  There’s a lot of difficult things to this parenting life I find myself in, but there’s always something to be grateful for, too.  Some days I can be grateful for my daughter, just as she is.  Some days I can be grateful only for the fact that it’s bedtime and tomorrow is a new day.  Some days I can be grateful that I have a fantastic husband who’s manning the home-front so I can recharge and be completely away from the chaos.

I focus on providing education.  Education that while it is fantastic that my daughter can “hold it together” in public, it also means that behind closed doors she falls apart.  I educate that hidden disabilities, mild disabilities, high functioning disabilities, are still disabilities.  They still require accommodations and different ways of parenting.  They still affect every single day of a family’s life.  And because they fluctuate, that day-to-day living becomes drastically inconsistent and time-demanding. 

I focus on my breath.  Because it slows me.  It fills me.  It is simply always constant.  And it is far more practical than holding my breath waiting on a wish that I don’t really want anyway.