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.

The Dignity of a Special-Needs Kid

Evangeline and I have a lot of friends who grasp at straws trying to help or encourage us on our journey with Autism.  Many of them cannot personally identify with us as a fellow-parent affected by Autism, so they try to relate to us vicariously another way.  The easiest thing to do is forward an email, share a Facebook post, or hand us a newspaper clipping of the latest trending story about some person who overcame Autism and accomplished something great.  

There’s the kid who was the basketball team manager and finally got to play in a game and started draining three-pointers like he’s Steph Curry.  There’s a non-verbal girl who can play Beethoven better than Beethoven could play Beethoven.  The grown adult who overcame Autism and is now doing research, having earned several masters and doctoral degrees.

The musical prodigy.  The advanced calculus PhD.  The child who simply overcame and is now living as a productive member of society.  They give us a sense that deep down, behind the behavioral and cognitive problems, there lies some hidden genius.  These are all heart-warming stories that people share with us, as if to say, “See, this could be your child too!  He’ll grow up to do something great!”  

These people mean well, and I truly appreciate their honest desire to help, but as the recipient of these stories I actually find them to be less helpful, not more.  

First, I can’t help but feel like this is setting me up for a false hope.  

The spectacular nature of these stories just proves how rare they actually are.  If overcoming Autism and doing something remarkable was commonplace, those stories would never go viral.

I’ve met way too many parents like myself whose greatest hope for their child is that he might bag groceries at the local supermarket for the rest of his life, and that is setting the bar rather high.  More of us, however, are beginning to work on our contingency plan in the likely event our special-needs kids outlive us.  Who will take care of him when we are too old and frail (assuming we live that long)?  What will become of him when we die?  Will he live with a sibling?  Should we impose that expectation on the sibling?  Will he live in an institution?  And if so, what nurse on the clock of an institution could possibly love him with the same unconditional love, and care for him with the same sacrificial care that we do?  

Overcoming Autism and living as a productive member of adult society with varying degrees of genius and cognitive ability is a noble goal worthy of aspiration, but for many of us, it just isn’t realistic.  

But the Second reason why these stories aren’t very helpful is because I can’t help but wonder if we, as a society (even as a church), haven’t inadvertently made the value of a human being dependent on ability.  Obviously no one would ever say that, nor would most even believe that, but many operate as if it were true.

This was reinforced at a conference I attended a few years ago.  Three moms of special-needs kids were leading a seminar on developing a special-needs ministry at your church.  I understand their goal — These moms wanted to empower leaders and give strategies for starting and sustaining a legitimate special-needs ministry so that no family would need to be told, “We have nothing for your child here.”

However, throughout their seminar, they kept trying to encourage us by saying things like, “These kids aren’t disabled, they are ‘differently-abled.’”  “They don’t have ‘special-needs,’ they have ‘special-gifts’ and ‘special-abilities.’”  Besides simply being a game of semantics, this actually contradicts the statement of another dad I met who said of his own son’s Autism, “He is severely disabled.”  

Their intent was to move children with Autism and other special-needs away from the margins of society and place them in the mainstream.  However, the means of moving them was a propped-up false notion of some deep hidden special ability that has yet to be mined.  They would never actually say this, but indirectly they reinforced a belief that a person’s value and dignity are dependent on their “special” or “different” ability.  

And they would never say this, but those who try to encourage our hearts with trending stories about the special-needs kid who mastered “Pathetique” also indirectly make value dependent on ability.  This attitude is many things, but it is not Christian.

Right at the beginning of the Bible, honor is given to all human beings for no other reason than “God created man in his own image, in the image of God he created him; male and female he created them” (Genesis 1:27).  In fact, the entire first chapter of the Bible is a story about the dignity of mankind for no other reason than because they are God’s.  They are not given dignity to the degree of their ability.  They are loved, unconditionally, irrespective of what they can or cannot do, simply because they are his.  

I felt the same thing the first moment my child emerged from the womb.  I loved him unconditionally; not because he had anything to offer me, not because he came with “special abilities,” and not because someday he might achieve greatness.  No, I loved him in that moment because he was my son, created in the image of God, and I was his dad.  Nothing else mattered then.  Nothing else matters now.

My son will most likely never earn a PhD.  He will never play a masterpiece concerto.  He will never make it rain threes in a varsity basketball game.  He will never reach the pinnacle of human ingenuity or set the standard for human achievement.  He may, in fact, live at home for the duration of his life.  And if the best he ever amounts to is bagging groceries at the supermarket, I could not be prouder of him.  Not because he is the best grocery bagger in the store: most likely he will suck at that too.  No, I could not be prouder of him simply for the fact that he is my son, and quite frankly, I don’t need another reason.  

We must stop defining people based on some perceived ability, or lack thereof. Instead, we must recognize their inherent dignity assigned to them by their Creator, irrespective of any ability or disability.  My son has value — no more, and no less than any other human being with any level of ability.  I wish you could see him the same way I do.  And I hope I can always see you the way God does.

Matt-Man's Going to Summer Camp!!

Matt-Man works harder than any other 6 year old I know.  In fact he's been forced to work hard since starting therapy full-time as a 3 year old.  He has to.  Simple tasks of daily living and communication are not simple to him.  He has had to invest many hours to learn each task of life slowly and as a whole series of smaller tasks.  Matt-Man doesn't get summers off.  He spends his summers in therapy or summer school, working hard all day.  Well, this year will finally be different.  For the first time ever, Matt is going to summer camp!

The Special Recreation Association in our area provides a summer day camp that is specifically designed with autistic children in mind.  The days are carefully structured and aides are available to help the campers out.  He will spend his days enjoying music, art, games, socializing, and swimming and his evenings at home with us.

We are so thankful for this opportunity.  We are considered non-residents of the districts served by this camp and had to remain on the waiting list until all residents had registered, praying that there would be a spot left for Matt-Man.  We were ecstatic to get the call that he was in.

Please pray that this is a good summer of fun and growth for him.  Matt-man has very few friends.  Not because he doesn't like other kids but because he doesn't know how to interact with them appropriately.  I've often watched him try to initiate contact with other kids his age only to get funny looks and be ignored.  I would love to see him develop friendships and better social skills this summer!

Matt-Man with his baby brother.  He is becoming a good playmate!