What's His Gift?

Whenever we meet new acquaintances, the topic of conversation inevitably turns to our children, which also turns to an explanation of Autism, 15q24, and an entire catalog of other adjectives.  

It gets awkward quickly. People are usually polite and interested but in a hyper-sensitive society they’re unsure what questions are appropriate.  So they dance around the questions they really want to ask until I give them permission and promise I won’t get offended.

People on the spectrum are… well… how would you say it?  “Delayed”?

Is he in, like, a special class or something?

Can he understand what we are saying?

Was it because you gave him shots and stuff?

Will he ever live on his own?

Again, it’s uncomfortable but asking is a form of caring so I try to respond graciously.  But if there’s one question that requires a little more patience on my part it is, “What is his ‘Gift’?”

I don’t think we live in an era where people’s minds automatically drift to the Rain Man when they think of Autism.  But like it or not, that movie seems to have conditioned our society.  The thought goes: Autism comes with a lot of social, emotional, and cognitive baggage, but at least it leaves some stamp of brilliance on the individual.  The notion of a Gift is still perpetuated in the media.  

As I write, ABC airs a medical drama, The Good Doctor, about a brilliant surgeon who has high-functioning Autism.  Dr. Murphy is socially aloof, but he has a Gift.  He can envision the human body in a way the average doctor cannot. Colleagues can overlook some of his interpersonal difficulties because he is uniquely qualified to see things they cannot.  Originally the writers of the show went to great lengths to differentiate between “Autism” and “Savant,” but if you watch from week to week you still get the impression that they are one in the same.  

I highly recommend the movie Temple Grandin. It is a raw biopic about the namesake of the movie, painting a vivid reality of what it’s like to have Autism.  But she has a Gift: because she can think in pictures, she has become a brilliant engineer who streamlined the entire cattle industry.  

Then there is Ben Affleck’s “The Accountant” and by now you know the routine.  A guy struggles to function in polite company, but he has a Gift. He’s brilliant with numbers (and ninja skills too).  One critic painted Affleck’s character as “giving Autistic kids their own superhero.”  

Part of the appeal these stories have on society is that they try to soften the blow of an otherwise bleak reality.  “Special Needs” doesn’t seem so bad if we can rebrand it as “Special Ability,” or “Differently Abled.”  So when people ask of our son, “What is his gift?” what they really want to know is, 

Is he, like, an accomplished pianist?  

Can he do calculus in his head?

He’s probably fluent in Mandarin.

Has he memorized “War and Peace”?

I bet he has a photographic memory, or something like that.

The question is innocent. Those who ask are not being unkind, they simply reveal their social conditioning.  At the risk of being naïve, I believe most people ask because they genuinely care, so I have to force myself not to answer, “What is his Gift? Well, on any given day he’s got a 50-50 shot at getting his pants on the right way—does that count?”  

In fairness, there are things my son is good at.  He’s charming and has a great sense of humor.  He has enormous confidence on a bicycle and is incredibly friendly.  He particularly enjoys manual labor.  But a savant he is not.  Society is conditioned to believe that in spite of his difficulties, there is latent brilliance somewhere beneath the disability.  

The most obvious problem with that understanding is it simply isn’t true, not for our son nor for the majority of children and adults who live with a similar disability.  What makes a story like Rain Man, The Good Doctor, Temple Grandin and The Accountant compelling is that they are outliers.  They may give the layperson a sense of relief on our behalf, but for the families who live Autism and special-needs day to day, it simply isn’t the reality.  

But there is a second problem.  Asking about a child’s Gift and expecting some gleam of brilliance shining from the darkness of disability reveals that deep down, we still ascribe value and dignity to a human being solely on what they can contribute to society.  The unspoken philosophy seemingly embedded in our culture suggests that maybe our kids are weird but the discomfort they impose on society is tolerated so long as they have some superhuman ability that makes them worthy citizens of humanity.  Certainly only a handful of people believe that and even fewer would say it out loud, but like it or not, that is the governing, albeit unspoken, philosophy in our culture.  

I am Christian.  In Christian theology, value and dignity are assigned at the beginning, not later when some “Gift” is discovered and honed.  The worth of a human being was pronounced when God said, “Let us make man in our own image,” and he stamped that image on the first human couple.  When there were no other humans around to affirm their worth, and when the first couple had absolutely nothing to contribute that could earn God’s respect, God gave his nod of approval anyway.  Perhaps one could even say God bestowed worth and dignity in spite of human inability to earn them through some “gift.”

So God created man in his own image,

In the image of God he created him,

Male and female, he created them

Genesis 1:27

I don’t believe many people in our son’s life are waiting to endow him with value and dignity until they can recognize some superhuman feat of cognitive ability.  But a question that presumes some “gift” (and the slight disappointment at discovering there isn’t one) reveals a cultural conditioning, even if it lies dormant beneath the surface.

My dad was once asked, after I received my Master’s degree, if he was proud of my achievement.  His answer was, “I’m proud of all my kids.”  That may seem like classic question-dodging, but “I’m proud of all my kids” was his way of saying that none of his four children needed to do anything impressive or display some “Gift” before we could earn his pride.  My dad very well may be impressed, but he wouldn’t bestow honor and dignity to us as a result of our accomplishments.  We are his kids, and in his mind, that’s all that matters.  Any perceived achievement or “Gift” is simply a bonus.

I’m proud of my son. He can’t tie a shoe.  He can’t use a spoon.  He can’t do advanced arithmetic.  On any given day he has a 50-50 chance of getting his pants on the right way.  He reads at a 2^nd grade level and has a temper that would make a drunken Irishman seem like a cub scout.  He doesn’t have a Gift.  But his value, dignity, and worth as a human being is not dependent on one.  He’s my kid, and like his siblings, he is given a nod of approval from the God whose image he bears, and that’s all that matters to me.  

Not The Son I Expected

Every parent has idealized visions of what their unborn children will be like.  In our very first Lamaze class with our first child, the group was asked what we were most excited about, thinking of our children.  Dads who were expecting boys answered predictably enough: 

I can’t wait to take him on the lake and teach him how to fish

It’ll be fun to have him help me change the spark plugs in the car

I'm looking forward to having someone to throw the ball around the yard with.  

Mothers were equally predictable with their expected daughters: shopping together, painting nails together, baking cupcakes together.  And of course dads with daughters weren’t too proud to sit down and drink pretend tea with her Barbies, and mothers would welcome the opportunity to hunt for toads with their little boys.  

In all these, there is a bit of projection.  We long to see ourselves, in some way, in our children.  Only real jerks would commandeer their children’s childhood in order to fashion their offspring in exactly the same mold from which they themselves were cast.  But it isn’t wrong to see a bit of ourselves in our children. Certainly they will never fully live up to our idealized vision of them but even so, at the very least they are likely to fulfill at least some of it.  And that is what makes parenthood so fun.  When I, as a musician, see my kid learn the piano, it’s somewhat fulfilling.  It’s the same feeling I felt when my 2-year old drilled a line-drive off a tee the first time he ever held a bat.  It’s the same feeling a computer geek feels when his kid learns to hack.  Or fish, or change spark plugs, or hunt, or….

I remember the first time I cried.  About a week after my son got his diagnosis, I was doing Christmas shopping at a toy store.  I meandered up and down the aisles looking for toys and games appropriate for pre-schoolers when I came to the sporting-goods section.  There they were, in full array: baseball gloves.  I picked it up, put it on, gave it a squeeze, and then came the tears.  I am a baseball guy; it is what I breathe.  With a diagnosis like Autism, and somewhat low on the spectrum, what were the chances he would ever be able to put that glove on and throw a ball around in the yard?

Every parent has idealized visions of what their unborn children will be like.  I had visions of me and my two boys trying to out-throw one another in a triangle with a baseball.  I had visions of my sons perhaps playing baseball on the same team — they are close enough in age.  This was my childhood.  My dad and brother and I played baseball, watched baseball, talked baseball.  The three of us tried to out-throw one another in the side yard.  We even invented a baseball game that everyone in the neighborhood played: The Mini-Bat-Major-League-Baseball (MBMLB, for short) where we used those 15-inch bats and a small Nerf ball.  Still to this day, one of my dad’s greatest memories is when he got to play on the same infield as me and my brother in a church softball game.  One of my greatest memories too.  He played first, and my brother and I shared the middle infield.  I had visions of possibly sharing with my two sons what my dad shared with me and my brother.

Every one of those idealized visions shattered in the sporting-goods section of a toy store, like a bat shatters after hitting a long out to the warning track.  I could no longer envision us playing sports together, let alone baseball.  

I imagine the ancient Jewish patriarch, Isaac, felt something similar when he considered his son, Jacob.  Isaac was a man’s man with twin boys; a rugged outdoorsman who had a love for the wild.  I imagine him as a kind of frontier-man who would build a log cabin with his bare hands, whose love for venison was trumped only by the thrill of the chase.  I also imagine he and his wife sharing a Lamaze class together and being asked what he was most excited about, thinking of his yet unborn twin boys.  I can’t wait to take them out into the woods and teach them how to shoot an arrow!

Fortunately for Isaac, he had one son who fulfilled his idealized vision: Esau.  Esau was a man’s man, cut from the same block of wood as his dad.  Twin brother Jacob, however, was not.  He would rather putter around the house with his mom, learning to cook.  While dad and Esau were out shooting game, Jacob was at home perfecting his stew recipe.  I imagine that at some point, Isaac had his toy-store moment of weeping, perhaps holding a bow in his hand knowing his son Jacob would never care to brandish it.  Something tells me Isaac never came to accept who Jacob actually was, always longing for who Isaac wanted him to be.

Isaac always seemed to resent Jacob for not being the “wild-at-heart” outdoorsman that Esau was, and Jacob seemed to resent his dad for trying to impose a lifestyle on him that he didn’t want.  It was a tension and resentment that was never resolved.  

I don’t want to be Isaac in this story, resenting my son for who he can never be.  And I don’t want Matthew being Jacob in this story, resenting his dad for not appreciating who he actually is.

Here is what I learned, I think.  Weeping in a toy store at the sight of a baseball glove is okay.  But I do not have to stay in that aisle and continue to weep.  He’ll never play baseball, and while part of that bothers me, it doesn’t own me.

I have idealized visions of who my son would be.  It hasn’t worked out the way I thought it would.  I have two very different sons (and a third who is completely different from his brothers!).  My oldest son is almost a carbon copy of me: He loves baseball.  He also loves music.  He hates country music because it isn’t music.  He loves playing practical jokes, drawing, and MarioKart.  But that’s not who Matthew is.  Matthew would rather sit in a lonely corner and spin the wheels of a toy car, or water the flowers in the garden.  He would rather go for walks and bike rides.  He would rather do quite literally anything than arts or crafts.

What I have learned is that, like Isaac and his twin boys, I want to relate well to all of my kids.  Certainly that is easy to do when the child likes all the same things I like.  But with Matthew, for whom this is not the case, I can either resent him for not being like me, or I can try hard to relate to him on his own terms; to relate to him according to the things he likes; to sacrifice my idealized vision of who I’d like him to be, and let him be himself.  

I have learned to roll cars back and forth on the couch ad nauseam because that is what he likes to do.  I have had to be comfortable with giving him free reign of the hose to feed the flowers.  I have often given up my right to watch the Tigers on TV because he would rather watch Dora the Explorer.  When he was first born, I wasn’t yet a runner, and couldn’t envision letting him be my pace guy on his bike while I struggled to keep up for six miles, yet today, that very thing is one of our favorite activities together.   

Matthew is not the son I expected.  I envisioned another son carved in my image.  That was not to be the case.  But he has taught me a few things.  I can relate with him and love him for who he is instead of grieving him for who he isn’t.  Certainly he is not the son I expected, but he is the son I needed.  

Autism and Aging

Plenty of people in our lives remind us how quickly life passes by and I assure you, I’m not in any hurry for my children to grow up.  “Enjoy them while they’re young,” many say.  “You blink and they’re all grown up!”  Far too often we hear the refrain from—no doubt well-intended—empty-nesters saying, “You’ll miss this.”  I don’t disagree.  I’m just in the throes of the latest temper-tantrum over who gets to play with the red car, the six-gazillionth cup of milk spilled within a hairs-breadth of my smart-phone, and the veritable boxing-match that is bedtime.  “You’ll miss this,” is not entirely helpful and is, in fact, rather irritating.

Yet even in the most difficult of days, I’m not eager for my kids to get older.  The world can be an ugly place and childlike innocence is the first casualty of growing up.  I love the childlike wonder at the world, discovery and awe at things adults take for granted, and the subtle pleasure of enjoying a vanilla ice-cream cone.  Those are the things I’ll surely miss, and I don’t need the reminders.

Kids simply grow up too quickly.  We have dear friends who sent their daughter to Kindergarten just this year.  Yet in that very kindergarten class, their daughter needs to suppress her love of Elsa and Anna because “Frozen isn’t cool” amongst cliques of 5-year-old girls.  That’s the dumbest thing I’ve ever heard, but you can’t argue with a 5-year old.

Peer pressure at a young age kills things like Disney movies, playing with toys, coloring, singing silly songs, and laughing at stupid jokes.  Maybe that’s natural.  I remember the pressure to stifle my own love for G.I.Joe action figures and Looney Tunes.  Natural, maybe, but it doesn’t make it any easier as the parent.  I’m not in a hurry for my children to grow up.

But for us, this fear of kids growing up goes deeper than the predictable transition of children through adolescence into adulthood.  It’s that we have a child with Autism who will very soon be a teenager with Autism, and not long after that, an adult with Autism.

Something happens, and I’m not sure when, why or how, but society’s perception of the special-needs person changes as they age.  Children with Autism are quirky and adorable.  Adults with Autism are sad and unpleasant.  Children with special needs warm our hearts and garner our compassion.  Adults with special needs make us wish they would go away.

As a society, we do a decent job of tolerating special-needs children.  Sure, there are horror stories of judgmental types who criticize and mock as if they’ve worn my shoes.  In my experience, however, those are few and far between.  Special-Needs children are treated, by and large, with a little more patience and compassion.  Special-Needs adults, it turns out, are seen as sad and kind of pathetic.

My son is only 8, which means he is still a little charming even if he is a little quirky.  Developmentally, he’s a toddler.  At the age of 15, developmentally he will still be a toddler.  Someday he’ll be a toddler trapped in a 40-year-old body, and society will certainly not view him then as society views him now.  That’s the thought that keeps me up at night.

Somewhere between childhood and adulthood emerges a stark change in society’s perception where there is simply less acceptance.  I actually witnessed this firsthand a few months ago.  It involved a painful exchange of question and answer between two adult women—one neuro-typical adult and the other bearing all the hallmarks and diagnosis of mid- high-functioning Autism.

In a group of people, the woman with Autism asked a question that was not inappropriate and not out of line, although it was out of left field.  Her neuro-typical peer, someone who has in the past showed my son a high level of compassion and tenderness, made enough subtle and not-so-subtle cues which shouted at this Autistic young woman, “Hey Weirdo!  Back Off!  Can’t you see I’m talking with regular people?”  Terse and discourteous responses were given to the questions which were tame but, admittedly, out of context within the conversation.  Tenderness and compassion were replaced with sarcasm and disregard.  There was an audible change in the tone of voice, from jovial to indignation.  Verbal and non-verbal cues all translated as, “You’re strange and I don’t really want you talking to me!”

This is only one case-study in the treatment of special-needs adults, but anecdotally, these types of encounters between neuro-typical adults and their Autistic counterparts are the rule, not the exception.  I wish someone would do an actual study to prove me wrong — I’d gladly eat my words.  I only fear such a study would confirm my suspicions.

When I see an exchange like that, I don’t just see two women having an uncomfortable conversation.  I see my son in a dozen years.  I see him doing something similar — working hard to fit in, trying to be included in a conversation even if he has difficulty doing it.  I see him wearing her shoes and fear him being treated with the same sarcasm, disregard, and downright scorn.  I fear him being indirectly told, “Get lost, weirdo!”

What is it that happens between childhood and adulthood that moves a special-needs human being from innocent and vulnerable to pathetic and weird?  Or, probably the better question: what is it about growing up that makes the rest of us less accepting and more insensitive?  Why is it that we — who should know better, who should be leading our children by example — grow increasingly weirded out and intolerant of special-needs peers?  Maybe in the experience I shared, the person who subconsciously (I hope) acted in incredibly insensitive ways, genuinely did not know the other party in the conversation was an Autistic woman; perhaps she would have acted differently if she had.  Should that even matter?

This is what keeps me up at night when I think upon my aging children.  I would hate for a clique of girls to steal my daughter’s love of Olaf, Sven, and the rest of the Arendelle gang.  That would be a sad day.  It will also be a sad day when my two other sons are “too old” for toys and cartoons.  Getting old stinks, but I have every reason to believe those three kids will grow up to be well-adjusted adults where the default from their peers is acceptance.  But the older Matthew gets, the less cute and endearing he becomes.  What happens when the community no longer sees an adorable and charming smile, but a weird, impersonal social misfit?  A toddler trapped in an 8-year old is still somewhat harmless and lovable.   How will the neighborhood react when he’s a toddler trapped in a 40-year old’s body?

The older I get, the more I believe this is what the concept of “awareness” is all about.  I used to think the sum total of “awareness” could be boiled down to simply being aware that a thing exists.  That is a necessary and obvious first step.  But true “awareness” means recognizing the way things are and then adjusting your life accordingly.  Awareness is a deliberate pursuit to recognize the special-needs people among us and a purposeful effort to respond in appropriate and respectable ways.  Awareness is coming to the conclusion that adults with Autism are no less entitled to the same dignity, value, and respect as anyone else.  And awareness means taking intentional, sometimes difficult, steps to show dignity, value, and respect in how we treat the grown-up version of the “least of these.”  Awareness means fielding a question from an Autistic woman from out of left field, and cutting her some slack; it means responding with kindness, not with sarcasm.  It means maintaining the same level of compassion for a 40-year-old toddler as you do for an actual toddler.

You have been made aware.  In your awareness, help make society a safer place for the 40-year old with special-needs.  Someone’s dad is worried about what might take place when his adult with special needs meets you.  His child isn’t weird, sad, or pathetic.  His child is created in the image of God.  When you meet his child, treat that person the same way you would treat anyone else — with dignity, respect, compassion, and patience.  Someday, that child is going to be mine.