Autism and Superheroes

This is a brief divergence from my usual posts about writing. I feel it needed to be said.

Several years ago, I was in Pennsylvania, and a man approached me in a grocery store parking lot.  The man had buzz-cut gray hair, a few days’ growth of beard, and shabby clothes.  Clearly homeless.  He walked with an odd gait, didn’t make eye contact, and he said, a little too loudly, that he would like some money for food or for the bus as a cold wind swirled around both of us.

My heart twisted inside my chest.  It was clear to me the man was autistic.  After living with my son Aran for so long, I recognize the condition elsewhere in seconds.  I realized I was staring at my son’s future.

When people think of autism, two images spring to mind.  The first is of a cute child with a piping voice who probably gets bullied at school.  The second is of a super-hero.

We see on TV shows and news stories about autism a lot of children who need help.  The children are adorable.  They say odd things or act in odd ways, and the adult viewers think, “Oh, that poor thing.  We need to help!”  Once they know a child is autistic, they show patience and understanding.  They want special education services in the schools and other services beyond the school.

We also see on TV shows the image of the autist as super-hero.  Adult autists, both real and fictional, show amazing powers.  Temple Grandin designs animal-friendly cattle chutes, sees the world in visual chunks, and goes on speaking tours.  Kim Peek (on whom RAIN MAN was based) has an eidetic memory.  Sheldon Cooper from THE BIG BANG THEORY (who has never been officially acknowledged as autistic but who shows all the symptoms) is a world-class physicist.

Here’s the problem.  The media always–ALWAYS–want to show people as getting help or as succeeding.  No one wants to end the broadcast on a downer: “And, despite everyone’s efforts to help, Alvin is now homeless, begging for spare change at the bus station.”  The children we see on TV shows inevitably get help, and the viewers are left with the vague idea that they’ll be all right in the end.  Autistic adults are portrayed as having successful full-time jobs where they’re such highly-regarded experts, everyone is forced to accept their odd behavior.  They even have friends and a social life.  And the audience says, “Well, see?  Autistic people do just fine.  They have super powers.”

The problem is, they don’t.

Only a few autists actually have a savant talent, and the majority of those talents don’t lead themselves to a successful career.  Aran, for example, has perfect pitch, but that won’t land him a job anywhere.

In fact, less than 10% of adult autists actually work at all, let alone full-time.  It’s hard for autists to find work–most can’t get past the job interview.  The hiring manager might be the nicest person in the world, but she’ll still be put off by someone who strides into the office and booms, “This is my new job!”

Most adult autists live on disability, or with relatives, or both.  Some live in group homes or institutions.

And a big chunk are homeless.

Aran can live with me for as long as he needs to, but I won’t be around forever, and I’m watching the social safety nets in this country disintegrate a little more every day.  Although there’s a lot of help around for cute autistic children, these children grow into less cute teenagers and then full-blown adults, and there’s very little help for them.

While the media have helped bring autism into the spotlight, they have also given many Americans the false impression that with minimal help, autistic children grow into slightly odd but perfectly functional adults.  They don’t.  They often need help and supervision all their lives, and that costs money.  The trouble is, these autists aren’t adorable children with big eyes.  They’re adults moving into middle and old age.  They don’t dress fashionably, they walk funny, and their voices have a strange lilt.  And when it comes to adults, we have this idea that they should shape up, try harder, do the right thing.  They’ve had a lifetime to learn how.  Why don’t they?  It must be laziness or foolishness that makes them that way.

If you ask people flat-out if they believed the above, they deny it, of course, and profess compassion or pity.  But left to their own devices, they’ll sidle to the other side of the room and avoid, avoid, avoid.

I took the man from the parking lot inside the grocery store and bought him a hot drink at the bakery, then gave him $20.  It was all I could do for him right then.  He shouted a thank-you and shuffled down the cookie aisle.  I watched him go, thinking of Aran and trying not to cry.

One day Aran will graduate high school.  I don’t know what’ll happen then.  He says he wants to go into finance or manage a hotel.  If he can get through college and survive a job interview.  Perfect pitch won’t help him.

There are no autistic super-heroes.

ADDENDUM

I posted this column on my blog, and this story was pointed out to me.

This man’s experience is eerily similar to mine. It’s not me, however. This writer lives in Ohio, and I’m a Michigander. The incident above happened to me five-odd years ago when I was visiting Pennsylvania for a graduate school residency, and didn’t happen in my home town. However, I wonder how often this story has repeated itself elsewhere, and sadly, it only underscores my point.

–Steven Harper Piziks

http://www.stevenpiziks.com/

The Doomsday Vault (a Clockwork Empire novel) available at bookstores everywhere.

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Autism and Superheroes — 19 Comments

  1. Thank you for this. We do need to muster the will and patience to care for people for the long term, not just when they’re cute, not just when the mood suits us.

  2. There are many people in this world who are not capable of taking care of themselves: those born with developmental disabilities, those with physical disabilities, those who have brain injuries due to stroke or a serious accident, those crippled in car wrecks, the elderly with dementia or with lingering illnesses — we could come up with many categories. Some have families who can look after them, though I suspect most of those families don’t have the resources to give that person all they need and frequently can’t care for the family member who needs help without major sacrifices by everyone else. But many don’t have any family to do things for them.

    As a society we need to do a better job of recognizing this need and putting resources into it. These people shouldn’t live on the streets and they shouldn’t be warehoused in badly run institutions. Charitable organizations can help and individual acts of kindness (such as Steven’s in this story) are always good things, but we need an organized system that ensures no one is left out in the cold.

    Why, yes, I am advocating for using our tax dollars to make this happen, and for doing a better job of it than we’re doing right now.

  3. We have two close friends with autistic sons.

    I comprehend your anxiety — which of course is across the board for everyone too, as this nation continues to destroy itself.

    Love, C.

  4. To be more concrete: This semester one of my spouses classes (university) has an austistic student — who happens to be the best writer in the class. A lot of the course work is writing about music they listen to, and the music of field trips he takes the class to hear. This student pays very close attention and see and hears the salient details that the other students miss — the very things a trained, professional music person highlights.

    He gets A’s on his papers and is thrilled. “I’ve never gotten an A in anything before.”

    Clearly his family has worked hard with him, and he isn’t that far on the spectrum. But still — what will happen later in his life?

    Love, C.

  5. Another example of autism-spectrum superhero is the current Sherlock Holmes, over in the British series SHERLOCK. It helps a lot if the autist is played by an extremely handsome actor brimming with talent; if every autism sufferer had dazzling blue eyes I am sure their fate would be different.

  6. Excellent post. I work with children and adults with developmental disabilities, and your post is depressingly accurate. The holes in the safety nets get larger every day and far too many people fall through the cracks.

  7. My daughter has Asperger’s Syndrome. It runs in our family so we were better prepared than most people. Uh huh, sure, she inherited it straight from me.

    I know what worked for me. It works for her, too. Pet rats! Yeah, and instead of a seriously troubled teenager you get a somewhat troubled teenager with a rat riding on her shoulder. Not what the general public would call socially pleasant. But she has proved she can take care of her rats and herself.

    We are no superheroes. We have our strengths, and we have our weaknesses. If we take a closer look at those strengths and interests, we are usually able to make a living (but you have to get us while we’re still young and nurture those interests). And, of course, we have a problem with formal education.

    BTW, a Scandinavian software company only employs autists and aspies as quality testers: no one in their right mind could check computer code for days and weeks and years while retaining said right mind. I actually think copy editing is fun, gee, I get to weed out all that wrong spelling and remove all those irritating extra spaces! There has to be some routine work needing perfect pitch, too (sadly, they don’t need Crystal Singers yet right now). Finance might not be the best idea because it’s full of stuffed shirts and we can’t understand or stand them; managing a hotel seems a bad idea because we are really good at failing whenever something unexpected happens.

    The way I see it, we can have a bum or an inmate in some institution (that was the Good Old Soviet Way) if we don’t do anything about autists. Or we can have a contributing community member if the community accepts some of us are a bit different. As my gift happens to be writing (no genius, barely enough to dabble in poetry and essays) I’ve done a lot of that to help people understand us the way we are.

    You know what? I think YOU are a superhero. For giving your son the best chance to have a life. For not brushing aside all the other autists out there. For speaking out in earnest. That’s heroic!

    • I remember hearing about the Scandinavian company somewhere. I’ve thought about trying to start my own business for the sole purpose of employing autists but am not sure what it could be. (I’m not computer-savvy enough to run a software company.)

  8. As I write this I’m sitting in a hospital room with my adult son who has Crohn’s Disease and high functioning autism, who’s just getting over his first major Crohn’s surgery. He can be very functional in many ways, but with his illness? Two major strikes against him. He needs a job with good medical insurance…and odds are he’s not likely to find one.

    Sad thing is, I fear the Crohn’s impacts him more than the autism. If he were healthy I think he could do a lot better. But the illness…sigh.

    Dang good thing I have no serious plans for retirement.

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  10. I found this link from one of Sherwood Smith’s blogs and it caught my immediate attention. Our son was just diagnosed with autism a few months ago. But, he doesn’t just have high functioning autism, he also has ADHD and dyslexia dysgraphia. The OT just finished her evaluation a week or so ago and now I have a whole new list of things (sensory profile information) to digest and understand. I am dumbfounded by how amazingly well our son has managed all these years. He’s almost 11. I think several things. First, what more could we have done for him had this been diagnosed when he was 6 or 7? but then I think, thank goodness that we at least know now and can get him the help at least starting now. It is a sobering and a scary thought to think what his life might be like as he gets older. We’ve been battling a particular “teacher” at school who doesn’t seem to understand his disorder and is quite cruel to him. She wouldn’t trip a blind person, at least I don’t think she would, but she certainly has “tripped” our son. These are the things, including the cruelty from peers and the lack of understanding from other parents, that really rattles my chain. I am his advocate, at least for now, and I’ve got to do everything I can to help prepare him for his future. Thanks for this blog post. I have much to think about and much to do, but I feel the Lord’s hand helping and guiding us through this journey, for which I am grateful.

    • Good luck, both to you and your son, Greta. Stay in close contact with the special education coordinator at his school. If anyone violates his IEP, let them know you’re ready to file a complaint with the Intermediate School District and/or the state. You watch–Things Will Happen.

  11. There are ways to set up financial resources for a child with disabilities. Unfortunately this does assume that you have the money to put into a trust fund or some such. If you do, you want to rig it so that the funds actually go for the support of the child (and not to his hypothetical future rock band, spouse, or con man), and this calls for smart lawyers and deft financial vehicles. My sister did this with Wells Fargo, where she works.