autism

While I was writing, Aran came into my office and said, "I was thinking about the time when..."

This is common with Aran.  He'll wander into the room and announce whatever is currently running through his head, usually beginning with "I was thinking about..." or "I was just imagining that..."

In this case, he said, "I was thinking about the time in our old house when we had gnomes."

And I wondered if he understood the truth.

Like many autists, Aran had no imagination when he was small.  Everything was absolutely literal.  TV was real.  Stories were real.  There were no metaphors, no similes, no hyperbole, no lies.  In order to jump-start imagination, I used puppets.  With puppets, Aran could see how pretending worked.  I acted like the puppet was a real person, but Aran could also plainly see that it wasn't.  So that was pretending!  Slowly, steadily, he started being able to develop an imagination.  He would interact with the puppets and even invent games with them on his own.  But he was still oddly concrete with it--everything he imagined had to be something he could see or hear.

So one day I told him that gnomes lived in the house.  I described them as little men with red pointy caps and blue coats and long noses, and told Aran how they lived in the walls and under the floor, where they sometimes knocked or made other noise.  Later, when Aran was in his room, I went down to the basement and knocked on the cellar ceiling with a broom.  Kala, who was upstairs, rushed into Aran's room.  "Do you hear the gnomes knocking?"

This started a trend.  Every so often, Kala or I would create a mysterious sound effect somewhere in the house and we'd blame it on the gnomes.  When something went missing, we said the gnomes took it.  We left out food for them sometimes, and when Aran went back to check later, it was always gone. This fascinated Aran no end.  The world was full of things he couldn't see!  Amazing!

Aran's imagination is varied and rich now.  He has a highly-developed inner life, and he owes to the puppets and the gnomes.

But we never did tell him the truth about gnomes.  Just never got around to it.  Now, however, I'm wondering if I should say something.  Does he know he were making it up?  Would I be shattering some deeply-treasured belief?  Would I be wounding him forever?

Maybe I should ask the puppets.

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 Aran'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 adults watching 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--wants 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 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 autistic children, these children grow into teenagers and then 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 cute 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.

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.

I may be WAY overthinking this, but I'm making a few bibs for friends' yet-to-be-born baby; said baby has a pretty high chance of being autistic, so it occurs to me that using a snap on the bibs--which with my pattern will be right under baby's left ear--might be uncomfortable for him/her.

Anyone got any anecdata on this? Lots of baby items have snaps (apparently they make clothing changes MUCH faster) and so s/he might just have to get used to it anyway, but, the snaps on these bibs being used within inches of baby's ear sounds like it might be uncomfortably loud if the baby IS on the spectrum. Of course I can always use velcro or buttons or something, but snaps are the fastest option both for installing and for putting on the baby.

Thanks for any help!

/WAY too detail-oriented, I know

So, who saw Louis Theroux's documentary on autism last night (9pm, BBC2)? If you're in the UK and you haven't seen it yet, you can see it on iPlayer here for now: http://www.bbc.co.uk/programmes/b00g2kjm

I've NEVER laughed and cried so much at a TV programme in all my life. I highly recommend everyone I know watches this documentary. Feel free to discuss it here if you've seen it.

At this very moment, Aran (my son who is fourteen and autistic) and Maksim (my son who is ten and neuro-typical) are downstairs deeply involved in a complicated let's-pretend game that seems to involve pirates, monsters, and a search for buried treasure.  They're using different voices to play different characters in their scenario, and they're prowling around the house together.

They've shut off the computers and TV and video game consoles on their own.

This is exactly the kind of thing that Aran would have found difficult when he was nine.  When he was twelve, I would have had to push him into participating.  Now he does it voluntarily with his little brother.

Just now as I'm writing this, they got into an argument over how the story should go.  Aran has stormed upstairs into his room. He thinks a moment, then goes back downstairs to propose an alternate idea.  He and Maksim are negotiating.  (Should we have robots in the story or not?)  Another incredible thing!

Hi,
My oldest son is in the 5th grade and we're gearing up for his annual IEP / transition to middle school next month. He has been fully included with an aide since kindergarden. We've tried to 'phase out' the aide at various times over the past 3 grades but he has had difficulties coping each time and we've had to put back the support. He does great academically, but he has emotional regulation, communication, and social defecits that often lead to crying and high anxiety.

We really want to phase out the 1:1 aide for middle school and have looked at some of the more successful school districts in our area which seem to utilize 'floating aides'. Our current district doesn't have any particular program for middle school kids with autism and would be open to listening to suggestions of models that other schools are using.

I'm looking for any and all info, resources, and personal experience anecdotes of your child with autism in general ed. middle school. I want to absorb as much as I can to try and create a strategy for our son.

thanks :)

Some of you may remember my story "Movement" from Escape Pod. Well, it's an ebook now, and I am donating all income from its December sales to the National Foundation for Autism Research.

Most of you already know that I have a son with Asperger's Syndrome, and that this story is very close to my heart. It was written during the difficult time when we didn't yet have a diagnosis and weren't quite sure whether maybe we were just bad parents. If you know a family struggling to understand a child on the spectrum, this short ebook may be an ideal holiday gift.

For purchases made at Amazon.com, 70% of the cover cost comes to me as royalties, and will be passed on the NFAR. You can learn more here.

The one thing I hate about being as autistic as I am is that my mind just doesn't click. I'm not sure if its because of routine or what but when it comes to cooking and household stuff... my mind goes into a state of panic. I've explained this before but not as well as I thought. It's almost like I know I can do those things but when I tell myself I need to do them. It's almost as if these things go over my head and my mind focuses more on what I'm doing at the moment that I can't do anything out of that concentration.

Maybe it is just because of my everyday routine. It sure as hell seems like it is. My parents always yell at me when I can't do those things on my own. It's not that I don't want to its just being in my own world means everything else goes over my head. I really hate this about myself because no matter how hard I try... its like I end up panicking because my mind is going against everything I try to think.

I hate this about myself. The fact that everyone is constantly pushing me to do them only makes me get angrier and then my mom is getting mad because of my minor outburst.

I'm not really sure how else to explain this kind of process. I didn't have much luck explaining it in the AS community since I don't have Asperger Syndrome... so I came here. What I have falls between High functioning Autism or Infantile Autism or Kanner's Syndrome... but more high functioning. But yeah...

Does anyone else deal with this sort of thing?