Tag Archives: autism

The Audacity of Hope

I don’t often write stories, and I’m a little leery of putting this one up, but I need to.  I started it months ago but just couldn’t finish it at the time.  This may be the first in a series of stories, the rest of which should not be so dark, I’m not entirely sure I’ll get around to finishing the next one, though (I’ve been working on it for a year or more and it’s not half done).  In any case, there is some content here that will be disturbing to most people, so proceed with caution.

All characters in this story are fictitious, but certain themes run repeatedly through our community, and we have lost far too many.  While some of the characters here may seem to have bits and pieces of various people, they are not meant to be representative of any individual or group.  It is important to examine ourselves, our perspectives, our delusions, and our blind spots.   Things are not always what they seem.   Most aren’t evil, but some people are.   Most aren’t completely mistaken, or misleading others, but some people are, and do.   No one is completely innocent.

If you recognize yourself or someone else in one of the characters, it is coincidental.  Before you get too upset with me, remember that this is just one possible story, about one fictitious girl and the people around her, in one little corner of a world that only resembles our own. Though those who know me well will likely see parts of me in at least one of these characters, I have tried to write from various perspectives here, and it should not be assumed that I align with any particular view or statement or conclusion of any of these characters.



Once upon a time there was a little girl named Hope.

Hope, so named by her optimistic young mother, was a fairly easy baby.  She slept every night, entertained herself for hours, and rarely cried.  Unfortunately, her mother was not expecting all the work involved in raising a child, even an easy one, and didn’t fully appreciate Hope’s demeanor.

Each diaper change reminded her of the fun she could be having doing anything else.   Each time her daughter wanted to nurse she cringed.  Formula was out of the question — babies were expensive enough already — but the thought of the little leech sucking her dry was enough to cause panic attacks.   So, she fed her often enough to keep her from starving, and started mashing up a little of her own food for her as soon as she could get away with it.

She was eventually able to ditch the nursing bras, as Hope started taking regular milk and solid food, and life was better for a time.  Freedom was obtained, at least to some degree.  She was able to pass off the easy-going toddler to friends and family members on a fairly regular basis, and she regained a semblance of a life.

As Hope began to grow, though, it became apparent that something was off.   She wasn’t talking like the other toddlers, and she was a little too happy to be left to entertain herself so often.  This honestly wasn’t a problem for her mother, who was more than happy to avoid the clinginess she saw from other toddlers.   Hope had been a leech as an infant, after all, and she was well and truly happy to be past all of that.   Potty training was going well, and once the diaper stage was over she would be free.

But as time went on, other people started noticing the differences and became concerned.  She started having to field little comments and questions from friends, family members, and random strangers on the playground (she sometimes sent Hope to play in the sandbox — where she would pick up sand and watch it fall through her hands over and over again — just to keep her occupied, so she could text her friends in peace).   Hope was happy, and Hope was letting her live her life, she honestly couldn’t see what the big deal was.

But soon, everywhere she went someone would want to talk about Hope’s “issues”.  People started pointing out the ways Hope moved and asking if she did that all the time.  Words like “stimming” and “spectrum” started getting thrown around.  Suddenly everyone she knew was concerned about her child’s development.   It was exhausting, and she wished people would just leave her alone about it.   Hope was happy, couldn’t they see that?

So she ignored them all as long as she could, and just got on with her life. When it came time to put Hope in preschool she was ecstatic.  Even more freedom!   There were no tears cried on the first day of school, for either of them.   After a few weeks, though, she got a call from the preschool.  It seemed they had joined the chorus; they wanted her to get Hope evaluated.   Since she couldn’t exactly ignore them she went ahead and went through the motions.  And low and behold, they decided her daughter had Autism.

Her daughter.   Autism.  Of all things, her own daughter was a freak.  Great.  Her luck, this would involve short buses at some point.   If that won’t mess up your social life, nothing will.  She had been grooming her boyfriend and was pretty sure he’d ask her to marry him soon, but what are the chances he’d want to take on a ‘special’ kid?  Her life may well be over.   Great.

They told her Hope would need therapy, lots of it.  They said early intervention was the key and threw a bunch of letters at her, like ABA and PT and OT and … she just stopped listening at some point.   She decided to just nod her head and go with whatever they wanted to do.   It was clear that her social life was gone.  And with all the therapy sessions she was once again tied to her daughter, nearly 24/7.  And the paperwork.   The paperwork was endless.   Hope had become a leech again, without even trying.

Her life suddenly revolved around a preschooler, completely.  Every day was scheduled.   If she wasn’t busy filling out more paperwork she was shuttling the kid to one therapy session or another.   Everyone she knew was suddenly an expert, and she was being inundated with links and books about all the latest fad diets and treatments.  The noise was deafening.   She couldn’t talk to anyone without them asking about Hope, they didn’t even care about her anymore.  Hope might be happy, but what was she supposed to do with a broken kid?  She no longer had time for dating or partying or anything.

She was reminded of those early months, tied to a nursing baby, stuck at home… unable to have a life.   At least then there was a time limit on it — a baby wouldn’t nurse forever.   But amidst all of the noise she kept hearing how autism was a lifelong thing.   Early intervention could help, they said, early intervention and endless therapy was necessary, but there was no real cure.  Her life was forever over.  She saw stats somewhere about how couples with autistic kids get divorced, and knew that she’d probably never get anyone to marry her now (that boyfriend had taken off a while back).   She was frequently stuck with other parents in the waiting rooms at various therapy sessions, and they often talked about how their children would probably be living with them for the rest of their lives.  Forever.   No end.

And that’s when she really started getting angry.   The little leech, innocent as she might be, had stolen her life.  She didn’t sign up for this.  This is not what motherhood was supposed to have been.  Her daughter was supposed to be singing her ABC’s and coming home with macaroni art and dressing up for ridiculous school plays to entertain her grandparents, not stuck in an endless string of therapy sessions just to get her to stop acting like a freak.  And there was no way to deny it at this point, her daughter was becoming downright weird.


The older Hope got, the more obvious it was that she was different than the other kids. She was happy to be left alone — she liked to be free to watch the world, study the way things moved, and get lost in all the beautiful patterns around her — but no one was leaving her alone these days.   People were constantly bugging her and making her do things she had no interest in doing.  They kept trying to stop her from learning and doing the things she needed to do.  They kept forcing her to look into their scary eyes, which were always trying to reach into her soul and steal glimpses of things they had no right to see.  School used to be fun, but now it was just torture.  Everyone treated her like she was stupid and she didn’t know how to convince them she wasn’t.

But worst of all, her Mom was mad, all. the. time.   She was always mumbling about how “autism” had stolen her life.  Hope didn’t know what autism was, exactly, but she knew she had it, and she knew everyone wanted rid of it.  But whenever Mommy started ranting about autism she would list all of the things that made Hope, Hope.  Like so many things in her life, it was very confusing.  Mommy said she wasn’t mad at her, but she was always mad at autism, and this autism sure sounded like her.  Mommy always said it was bad to lie, but Mommy lied a lot, and Hope suspected she was lying about this, too.

So Hope tried really hard to cheer Mommy up, to please her teachers and make the therapists happy and even to make friends so they would stop talking about all of her ‘social problems’.   But it was hard.  There were rules for when to do what, how to be normal… but there were too many exceptions to the rules and no one was willing to explain them to her.  Other people broke the rules and no one seemed to care, but every time Hope broke a rule, even if it was one she had never heard about before, she got in trouble.

And Mommy was always mad, and she had found new friends that were just as angry about autism as she was.  Sometimes they would get together and drink wine and rant and rave about how evil autism was, how it had stolen all of their children.  Mommy always thought Hope was sleeping, but it’s hard to sleep through that.

Hope saw a show one day where a mom was really upset about something, and her daughter gave her a big hug, and it cheered her up.  So the next time Mommy was upset Hope ran up and gave her a big hug.  She just shoved Hope away and asked what she was doing, it was too hot for hugs.   Except it wasn’t hot.  But Hope never tried to to hug her again, except for hellos and goodbyes, where it was required.   So confusing.

Hope didn’t know how everyone else learned all the rules and exceptions.  People kept telling her she had no common sense, though.   Maybe there was supposed to be a pre-installed rule book in her brain, and God just missed passing out that piece to her.

To top it all off, everything was overwhelming.   The neighbor liked to mow his yard every Saturday morning really early, and the sound of the mower made Hope sick.  She couldn’t escape the noise, even hiding in a closet with 5 pillows over her head.   Mommy didn’t seem to notice.  Sometimes there was so much bustle in the hallways at school Hope felt like a minnow in a sea of piranhas, and she had to hide in a bathroom stall until things calmed down.   No one else seemed to notice.  There was a high pitched squeal in one of the classrooms, whenever Hope was there she could hardly hear anything else or concentrate on anything, it was so distracting.  No one else seemed to notice.  There were a million little things that made life hard for Hope, and no one else ever noticed.   Hope learned a long time ago that if she complained about them she would be laughed at, so she just tried to figure out how to live with them.

Drumming her fingers on her desk helped break up that high pitched squeal, but it annoyed her teacher.   Rocking helped calm her down when the world was going crazy around her, but apparently rocking made her a freak.   Every time she found something that soothed her and helped her do better, someone would laugh at her or tell her it was weird and she needed to stop doing it.

So Hope started studying people. She started trying to act like the other girls she saw, talk like them, do the kinds of things they did.  There were a lot of things she just couldn’t do, but she tried.  Maybe other people did notice after all, maybe they had been through the same thing and had already learned how to deal with things on their own.   Whenever she saw someone doing something that seemed like it might help, she would watch them for a while, and see if anyone made fun of them.   If no one seemed to notice, or no one cared, then she would study them a while longer, and practice doing it when she was alone, until she could do it exactly the same as they did.

Every once in a while she’d get lucky and the news station would run a story about something that other kids did to “gain control”.  The newscasters were always ominous, telling parents they needed to watch out because their kids were doing dangerous things, but the things they showed were intriguing.  Things like eating disorders and cutting and suffocation — they all sounded horrible and shocking at first, but then they would interview a kid… and the kid would say how it helped him feel in control, grounded, how it helped calm the pain, and Hope would wonder… The best part about the news programs was that they always told parents how their kids were hiding these things.  It was like an instruction booklet.   Hope loved rules she didn’t have to try to figure out on her own.

She tried a lot of things.  Sometimes they helped, sometimes they didn’t.   She kept the things that helped and tried integrating them into her life, eventually.  Sometimes people still made fun of her for things others could do in the open without ridicule, and she never could figure out why.  She had to abandon many things, but she managed to hide a few and every once in a while she found something she could keep.

As time went on Hope thought she was doing a pretty good job.  The world was finally starting to make a little sense.  She had enough coping mechanisms that she was no longer having to hide in corners or closets or bathroom stalls very often.   She almost never freaked out and cried til she puked anymore, and even the therapists seemed to think she was doing a great job.  But Mommy was still mad.   Mommy was always mad.  And Mommy had taken her anger to the internet.


“We will win this fight.” Hope’s mom told herself that every morning.   She had accepted that her old life was well and truly gone, and had decided to pour herself into the fight against autism.  This disease had stolen enough of the world’s children, and she was starting to understand who was to blame.   She wished she hadn’t ignored all of those emails and books that people had tried to get her to read back when Hope was a toddler.  Long ago her friend Mary had tried to tell her that there were cures Big Pharma didn’t want people to know about, but it had gotten lost in all of the noise.  If she had looked into it back then maybe she could have cured Hope.  She had tried the diets and the supplements and some of the more expensive treatments anyway eventually, but she had known it was a futile effort.  It was too late for Hope.  She was too old.  The damage was done, permanent.   Autism had stolen her daughter long ago, and all she could do was show her to the world and try to help others avoid the same fate.

Some of the treatments had worked, at least.  When she put Hope on a gluten free diet all of that ridiculous rocking had finally subsided.   With the addition of a couple of supplements she started hearing good reports from the teachers and therapists.   And it had been a while since she’d been called into school because her daughter was cowering in a broom closet over a fire alarm.

But the autism was still there.  Still hiding behind her daughter’s eyes, messing up her life in a million little ways.  At least she had finally found some friends again.  Talking to people online wasn’t as good as being able to go out and party with a group on the weekends, but she had found a whole community that didn’t run away when she told them about her daughter’s problems, and there were a few parents in the area she could hang out with at least.

Blogging was fun, really.   It wasn’t her favorite thing in the world but it wasn’t bad.  She had always been a decent writer.  If she did it right, she could make a little money at it, and she loved having an excuse to carry her camera around all the time.   The one thing autism hadn’t managed to steal from her daughter was the incredibly good looks she’d gotten from her mother, and she soon found that with creative camera angles she could hide her weirdness when she wanted to.

The thing she loved most about blogging, though, was that everyone suddenly cared about her again, and not just about Hope.   When she first started blogging she had tried to present only the good side of her life.   If you can’t say anything nice, and all that jazz… but the more comfortable she got with the media, and with her online friends, the more she started sharing.   It turned out she got more response to posts the more uncomfortable they were, so she started being more real more often, and her readership soared.   People all over the world were coming to her blog to commiserate with her.   People new to the community with younger kids started asking her for advice, and she was more than happy to give it.  She ate up the attention, and she kept on sharing.

She was still mad at autism though, and she used her new soapbox to help teach people about who was responsible.   She saw it as a war against a machine, and it was a war she was going to try to find a way to win.  Since the alternative treatments had helped control Hope’s issues some, she had been able to cut back on some of the therapy sessions and other nonsense, and this gave her more time to concentrate on the fight.

And then puberty hit, and all hell broke loose, so to speak.  She had been warned about puberty, but she was not prepared for this.  Hope started to sulk all the time.  The happy little girl was gone, replaced by a moody, stinky teenager, who had no common sense whatsoever.   Every single thing had to to be spelled out pedantically for her, from the need to wear a bra to what to do with a pad… and every single discussion led to her stomping off in a rage.  The last straw came when she walked in on Hope in the bathroom one day by accident, and found her cutting her leg with a razor blade.  Not shaving, mind you, cutting into her leg, with a straight razor.   And her reaction to being caught? She held up the bloody razor and started screaming.

After everything she had done to fight autism, her own daughter was threatening her with a razor blade and screaming bloody murder.   She was at a loss for what to do, so she ran out and barred the bathroom door until Hope calmed down.   Once she’d gotten a drink of wine, and calmed down a bit, she decided she’d better document the ordeal.   Maybe one of her friends would know what to do.  She found her camera and went to see if Hope had calmed down enough for pictures.   She found her curled in a ball, crying and rocking, as if she were the one who had been threatened.   There was blood all over the bathroom, but the bleeding seemed to have stopped on it’s own, so she just started taking pictures.


Life had gotten better for a little while. Hope had made a few friends, they weren’t close, but they were something.   She had been doing well in school and therapy and had built up enough coping methods that she could navigate her days without any major meltdowns.   But her mom was still angry.   It didn’t seem to matter how much better Hope was doing, her mom just kept right on complaining about how much autism was ruining her life.   It was clear by this point that when she said autism, she really did mean Hope.

Hope wasn’t very good at picking up on nonverbal cues, but there was no way to mistake her mom’s hatred.  Sure, she was always pandering for her friends and blog readers, telling them how much she loved her daughter in spite of the autism that had taken over their lives, but it was clear by the way she acted that those were just lies.  Mom used to try to make her readers think that her life was perfect, except for the autism, but that changed after a while.  Now she mostly just told them how awful autism (Hope) was.

Mom seemed to think Hope didn’t even understand what the blog was, but how could she not?   Mom’s every waking moment was spent either writing a blog entry, reading comments on the blog, talking to one of her online friends, or harassing Hope with that blasted camera.  Hope read it every once in a while, just to see what Mom was saying.   Most of the time she wished she hadn’t, but morbid curiosity kept her going back.   And Hope wasn’t the only one that knew about the blog.  The other kids at school knew, too.  Yeah, her mom posted ‘anonymously’, but it was a fairly small town, and someone had figured it out.  The other kids started perusing the blog and the torment and bullying she had worked so hard to escape from started up all over again.

It wasn’t hard for them to find fodder, either. Her meltdowns weren’t all that common anymore, she had worked hard to get them under control, but her mom had taken to snapping shots whenever she had one, and then describing them in detail on the blog, to educate others on the realities of autism.   And when she didn’t have any new embarrassing stories to post about she would just tell an old one from when Hope was little and lost in the world.  Sometimes those old stories were kind of cute, but there was always an undertone, she was showing the world what autism had done to her family.  The bullies at school ate it up.

Life had become hell, and Hope had no idea how to escape.   She thought about killing herself from time to time, but she knew what that would mean, and as bad as things were, real eternal hell had to be worse than this living hell that would surely, eventually, have to end.

And then she hit puberty. People were always warning kids about puberty.  Showing stupid videos about life changes that all the kids just laughed at, because most of them were filmed in ancient times and they were so very ridiculous.  Hope knew better than to ignore them, though, because she could tell this meant new rules she would need to learn.  Unfortunately, they didn’t cover half of what she needed to know, and she couldn’t make words come out when she tried to ask anyone.

Her mom was no help.  No big surprise there.  After she started her period, she managed to find a way to tell her mom about it, but all she did was point out some tampons and panty liners in the cabinet, and say she’d better not catch her stopping up the toilet or leaving messes anywhere.   She didn’t even know if teenagers were really supposed to use tampons, they hurt when she tried them, but she was afraid if she asked too much it would end up on the blog and everyone at school would know.

Hope was out riding her bike one day when the neighborhood bully, a girl a couple years older than her, started yelling and laughing about bouncing, and asked Hope why she wasn’t wearing a bra.  Hope had never thought about bras before.  She went to ask her mom about it, for lack of anyone else, and was met with peals of laughter.   After she finally stopped laughing she took Hope to a store and helped her pick out a few one-size-fits all kind of bras, so that she wouldn’t have to bother again later.

And that was when Hope got angry.   Hope was confused a lot of the time, but one thing she knew for sure was that it was a mom’s job to help her daughter enter womanhood.   Hope had been working hard, for years, for her whole life, to learn the rules and follow them and not make waves, and her mom still hated her.  Mom would always hate her.  Mom said she hated autism, but what she really hated was Hope.  Maybe she hated autism too, but she hated Hope.  Maybe Hope deserved to be hated.  Maybe this autism really had stolen her away and destroyed the perfect little girl her mother would have had otherwise, but Hope was what was left.  And Hope was trying incredibly hard to be the best Hope she could possibly be.   And even though her mother hated her — even if it was justified — if she couldn’t even live up to the basic requirements of her job as a mother, then Hope was done.

Hope stopped trying to please her mother after that.  Finally realizing that it was a futile effort.   She spent her energy, instead, on just trying to get through each day.   Hope had never really gotten angry at people before, but she found it started happening more and more often.   She figured maybe it was contagious.   Her mother had been mad for as long as she could remember, maybe it was genetic and puberty brought it out.  For whatever reason, she found herself lashing out at people more often, instead of only cowering.

She knew that was a really bad direction to go, though.  Hate and anger were toxic.   She had seen what it had done to her mother, and her mother’s friends; and genetic or not, she wanted no part of it.  So she started trying harder to control her outbursts and meltdowns.   It was impossible.   Most of the little things she’d picked up as coping mechanisms over the years simply did not work for this stuff.   She was constantly lashing out and getting in trouble anyway.

She got hurt one day and found out that pain actually helped some, though.  Pain tended to steal her focus away from the things that were bothering her, and it made it easier to ignore the triggers.   But pain was hard to use.  Banging your head against a wall wasn’t exactly socially acceptable, or particularly safe.   And most things that cause pain only last for a very short time.   She needed something she could take with her.  She started thinking back to some of those news programs and remembered the one on cutting.  She wasn’t too thrilled with the idea of scars, but getting cut didn’t just hurt when it happened, the pain tended to linger.  It was distracting in a way that made her rule it out a few years ago, but maybe it was what she needed now.

That news story had showed kids with scars all up and down their arms.  Hope thought that was ridiculous.   Why would they want to have to wear long sleeves for the rest of their lives?  So Hope picked a place that no one would likely ever see (face it, no one was ever going to go out with her anyway), and determined to only make a small scar.  Infected cuts hurt longer, so she just grabbed an old razor blade from her mom’s toolbox instead of getting a new one out.

She couldn’t make herself cut deeply at first.  She just kind of scratched her thigh the first time.  It didn’t help at all, so she cut deeper the next time, and that did work.  She felt guilty, and stupid, and more broken than ever, all day long.  The pain was a constant reminder of what a failure she was.  But it also distracted her from everything.   The cut got infected and started itching and that worked even better.   But she got a little worried about getting caught if the infection got too bad, so she put some ointment on it eventually, and it healed up.  After a few days she decided the experiment had been a success, and she cut it open again, in the same spot so she she wouldn’t end up with a whole lot of scars.  She could explain one scar away, even if someone did see it.

After a few weeks Hope had found a new routine, and was getting her outbursts under control.   She bought a pocket knife and started carrying it with her, just in case she needed to make the cut deeper.  She was still using other coping mechanisms some, but the cutting was the one that really worked.   She felt like crap all the time, but at least she was able to hide it, and everything else, passably well again.

She didn’t care anymore if her Mom hated her, though.   And she had stopped trying to please her.  She did the bare minimum on her chores, to avoid the fights, and avoided her as much as possible.   She couldn’t tell whether Mom even noticed, but she didn’t care.  With the tantrums and meltdowns down some again she was able to slide under the radar and wasn’t being harassed as much at school, and that worked for her.  Until Mom walked in on her in the bathroom one day.

Of all the people to catch her cutting, it had to be her mom.   Her self-centered, angry mom, who already hated everything about her.   And now she knew.  She knew her daughter was not only stolen away by autism, but was now one of those freaks the news stations use on primetime stories to scare other parents.   Her mom, who blogged about everything.   Her secret was not only out, but out in the most horrible way possible.   The whole school was going to know by tomorrow.   And to top it all off, she’d been caught with her pants down, and Mom was standing there in the doorway with a look on her face that Hope couldn’t quite place.   She just stood there looking… what?  What was that?

Hope didn’t know, but she had yelped and thrown up her hands as soon as her mom walked in, and after the yelp she had started hyperventilating, and she couldn’t do anything but stare at that look on her mother’s face.  Pain or no pain, blood or no blood, she was frozen, and the world was frozen with her for a second.  And then her mom started screaming.  Hope wasn’t sure what she expected, but that scream finally told her what the look on her mother’s face was, and it made no sense.   She couldn’t tell what her mother was actually saying, but the tone told her she was afraid.  Her mom was afraid of her.  Not worried about her, not concerned, not freaked out even, just afraid.  She’d known her mom would react even to this selfishly, but she couldn’t figure out why she would be afraid.

Hope was still frozen there, still hyperventilating, still unable to move or say anything but she was able to think a little, and register just enough of her surroundings to realize her hands were raised, and one of them still had the razor blade in it.   So that’s why her mom was afraid.  She tried to put it down and couldn’t.  The more her mom screamed the harder it was to think about anything but just trying to breathe, and soon the world disappeared.

Hope didn’t think she’d actually blacked out, but she didn’t remember moving.  She wasn’t sure where her mom had gone, or how long it had been since she’d walked in on her.  She found herself cowering in the corner of the tub, and she had bled all over the bathroom rug.  She thought about trying to start cleaning up, but she still couldn’t move.   She wasn’t sure there was any point, anyway.  Her life was over.  The more she thought about that look on her mom’s face the more sure she was that things had gotten abruptly worse, and would never get better.   If she could have moved right then she probably would have slit her wrists, but she couldn’t.  She had calmed down, she was breathing normally, but something had broken inside of her, and she was incapable of making the decision to move.

Hope had no idea how long she’d been curled up there before her mom finally returned.   Mom had her camera, of course.  Hope couldn’t even ask her to stop taking pictures.  She just sat there and watched her world crumble around her.   Everyone would know, now.  And her mom was still afraid.  She could see it lurking in her angry eyes.  Hope could tell she was no longer just broken in her mother’s eyes, Hope was evil, now.  There was no longer any veil, however thin, between this autism her mom was at war with and herself.  Hope had become the monster.

The next few months were a blur.  There were ambulances and police and social workers and psychiatrists and doctors and medications, and Hope didn’t care about any of them.  She was gone.   Locked somewhere behind the eyes everyone was always so keen on being able to see into.  She let them look all they wanted, now.   Maybe someone would find her.


Mary had known Hope’s mom for a long time.  They had gone to the same elementary school, and lived fairly close to each other, so Mary used to run into Hope and her mom on the playground when she took her nephew, Jack, there to play.   Mary was a teacher, and had worked with autistic kids for a few years.  Jack was autistic, too, and she had done a lot of research on it, both for work and for her sister’s benefit.  The first time she met Hope she knew something was off, but she didn’t want to be rude, so she didn’t say anything.  Eventually she did ask Hope’s mom if she had gotten her evaluated, but she was distracted at the time and Mary decided it was best to back off.

A few years passed by and Hope ended up in the same kindergarten class as Jack.  Mary got to talking with her mom at a school event one day and found out she had received an autism diagnosis the year before.  They exchanged email addresses and Mary had sent her some information, but they hadn’t really talked after that.  Mary figured she was overloaded and backed off again.

As the kids grew older, social networking and blogging became all the rage, and Hope’s mom started writing about her life.   Mary had been connected with the local autism network for years.   It’s a small community, and one day Mary saw a blog entry with Hope’s face on it.  Her mom was blogging under a pseudonym, and calling her daughter Sue.  Hope was adorable, and always had been.  It turned out her mother was a pretty good photographer, and that’s what drew Mary in at first.   She started reading some of the blog entries, and soon felt connected to Hope’s family in a way she hadn’t been able to manage before.  After a while she tried reaching out via email again, and Hope’s mom was much more receptive this time around.

They became fast friends.   She seemed desperate for a way to help her daughter, so Mary shared some of the links she rounded up a few years back for her sister.   Her sister had never been particularly interested in them, but Mary had talked to other parents who swore that some of the treatments had saved their children, and she wanted Hope to have every chance she could. She was a pretty odd kid, but she was beautiful, and she seemed to be fairly bright underneath it all, perhaps one of the new diets would work for her and she’d be able to come out of her shell.

As the years went on, Mary started to distance herself from them a bit, though.  Hope was doing so much better, but her mom just kept getting more and more angry.   Mary kept up with the blog for a while, but stopped visiting and emailing.  Eventually she got sick of the anger and stopped reading the blog.

When she picked up the newspaper that day her heart sank, and she felt guilty.  Hope was on the front page.  The once beautiful girl was laying in a hospital bed with dazed eyes.  The article said she had tried to kill her mother a few months ago, and had been in and out of treatment facilities ever since.  Her mother was now fighting for services that her insurance just didn’t want to pay.  Mary’s twinge of guilt was for not keeping in touch.  Here her friend had been facing this horrific ordeal, fighting for months, and Mary hadn’t even known.  She had never understood why there was so much anger, but there must have been a lot more going on behind the scenes.   Mary should have been more understanding.  She should have kept in touch.  Maybe she could have done something to help.

She sent flowers to their home, and spent the next couple of days trying to catch up on the blog entries she’d missed over the years.  They painted a bleak picture, indeed.   All that suffering, and Mary had been indifferent.  Hope was just a cute face to her, with some oddities.   She had never realized how hard it must have been to raise her.

Over the next few months she made sure to keep in touch with Hope’s mom, and offered help whenever she could.   She even helped with paperwork and petitioning the insurance companies.   Since she had worked in the school system, she helped Hope’s mom navigate the bureaucracy there, and get the helps in place that they’d need so that Hope could go back to school when she came home.

They had both changed, Hope and her mom, but it was understandable after such an ordeal.   The news article had stirred up a lot more attention than they were used to, and internet trolls had come pouring out of the woodwork.   Most blog readers were fellow parents, and they understood how hard it was.  But some of these new people were just crazy.   They started attacking Hope’s mom, as if she had been the one doing something wrong.   As if it was somehow her fault her daughter had tried to kill her with a razor blade.  Mary couldn’t understand it.   Did people have no compassion?   Couldn’t they see this family was hurting?


Everything had fallen apart. She couldn’t even stand to look at her blog anymore.   She’d been at war with autism for years on end… it had finally tried to strike a fatal blow, and everyone thought she was over-reacting.   Her own daughter had tried to kill her.  She had photos to prove it.   But ever since her story went national people had been attacking her for no reason, as if it was all her fault.

She still had friends.  Most of her blog readers had gathered around her, a lot more people than she realized were on her side, but it didn’t seem to matter.  There were whole organizations that aligned against her and started harassing her every time she posted anything.   They called themselves autistic, as if truly autistic people have the ability to communicate that well.  The whole situation was ridiculous, but that didn’t slow the onslaught.  Before long she was weary of the fight and all the fun was gone from blogging.  She still posted, just to keep her loyal readers updated, but she didn’t even bother to read the comments anymore.   She set it up so a friend could monitor the comments — Mary just deleted all of the attacks so she wouldn’t have to see them.

Hope was gone.  She barely even communicated anymore, and when she did it was usually to lash out.  They had to keep her medicated, and even under sedation she had caught her trying to to steal a knife out of the kitchen in the middle of the night.  Hope had lunged at her and tried to kill her a second time.  Autism had won, at least in this family, and there wasn’t much point in fighting anymore.  She should have tried the treatments earlier, but she was young and stupid and had no idea what she was setting herself up for by ignoring the truth for so long.

It was clear that her life was never going to be anything but fighting doctors and insurance companies and her own daughter just to survive.   Every time they decided to send Hope home she had a panic attack just thinking about it.  One of these nights her own daughter was going to stab her in her sleep, and there was nothing she could do about it.  Perhaps she really should have refused the leech, all those years ago, when she wanted to nurse.   She had no idea what to do, now.


As it turned out, hell on earth did have an ending, and Hope was glad to see it coming.  She would rather be anywhere else, doing anything else, but there was no life for her anyway.  Not now.  Not broken like this.  She could only hope that God wasn’t duped by her mother’s story, the way so many others had been.  He should understand, right?   She couldn’t tell her side of things.  She had tried, but the words wouldn’t come out.  She had managed a few words a time or two, but the people she was trying to talk to had gotten frustrated and walked away before she could get her story out.  After a while she stopped trying.  But she shouldn’t have to try with God, right?  She hoped so, anyway.

She didn’t know where He’d been all this time, He sure hadn’t seemed to be protecting her.  Her mom had taken her to church for a while when she was younger.  The teacher there said that Jesus would be her friend if she asked Him to be, and she had really needed a friend.   She had said the prayer the woman taught her, and meant it.  She had been talking to Him ever since, in her mind, wher she could use pictures when the words wouldn’t come, and sometimes He seemed to answer.   She didn’t know why He never stepped in to help, but she hoped He’d be waiting for her when she got to the other side.

This had been a really bad day, in a string of really bad days, and weeks, and months.   They had sent her home, again. She hadn’t know whether she wanted to be home or not.

Home meant having to see the hatred and fear in her mom’s eyes again, but at least there were no restraints.   It hurt that her mom was afraid of her, but at least she usually left her alone.  The shrinks always wanted her to talk, bugged her endlessly about it, then interrupted her as soon as she managed to get a word or two out, to tell her that she’d never get better if she refused to communicate.  Most of the other patients in those places were just as broken as she was, and some of them made noises worse than the neighbor’s old lawn mower.   She couldn’t escape, and they weren’t about to let her near a knife, so she had to find other ways to deal with it, no matter how bad they looked, and that usually meant crouching in a corner and banging her head on the wall.   This, of course, was seen as proof of further regression.  They had tried to teach her other ways of coping, but they were all useless.

The last time they sent her home she had made a huge mistake.  She had thought that perhaps, if she could find a knife, she could keep it hidden and the pain would allow her to gain some control and find herself again.   Everyone kept trying to tell her that cutting was dangerous and pointless, but they were wrong.   She had done it for a long time, and it had been working.  If her mother hadn’t barged in on her that day, everything would be fine.   She’d have been close to graduating high school and escaping her mother altogether by now.   Instead she was broken.   Broken beyond repair, probably, but maybe, just maybe, she could fix it if she could gain control again.

Something in the back of her mind kept telling her that the cutting really was damaging, but even if it was, it was only damaging her mind, and that was broken already.   She figured she had nothing to lose at this point, so after thinking around in circles on it for quite a while, she decided to try to find a knife one night.  She had tried to be quiet, she had gotten to the kitchen, found one, and was running back to her room with it when her Mom heard a noise and came out to see what was going on.  Hope ran right into her.  Seriously.   The universe had a sense of humor, and Hope was the butt of the joke.

Of course, her mom freaked out once again and told everyone she’d run at her, with a knife, in the middle of the night.  With a story like that, Hope had never expected to to see her home again, but apparently there was some mix-up with insurance or something, and here she was.

More precisely, she was laying in the middle of the living room rug, which was slowly turning red.  She could see the puddle growing in the mirror on the wall, and she knew it wouldn’t be long.  Her mother was on the phone in the next room, saying something hysterical to a 911 operator.   Hope decided she didn’t want her last minutes full of her mother’s lies, so she was attempting to block out the sound.

Hope was still trying to make sense of the day, anyway.   Mom had gone around in a daze for days after she had gotten home, mumbling about how her life was ruined yet again, how she just couldn’t handle this again.  She had spent every evening drinking wine and crying on Mary’s shoulder while Hope did her best to just stay out of the way.

But then this morning came and Mom was back to normal.   Back to how she used to be before the fear showed up in her eyes.  The hatred was still there, but it didn’t seem as strong somehow.   She took Hope out for supper at her favorite restaurant, and even let her get dessert.   She hadn’t even lost her temper when an ambulance went by on the car ride home, and the noise made Hope rock in her seat.

When they got home Mom said she had a surprise for her, and pulled out Hope’s old pocket knife.  Her mom was saying something as she handed it over, but Hope was so dumbfounded she didn’t hear it the first time.  After a minute or two she regained enough composure to ask her Mom what she’d said.  “Maybe you needed this after all,” she said.   Then she gave Hope a hug, and walked away.  Hope was still standing there in shock a few minutes later, opening and closing the familiar blade; enjoying the feel; wondering why Mom had suddenly changed so much; wondering what the catch was.

And then Mom walked back in, holding a gun Hope had never seen before.   Pointing it straight at her.  Wearing the biggest smile Hope had ever seen on her.   The last thing she heard before the explosion was “I win”.

Hope was still perplexed, but she knew one thing.  Mom did not win this war.  There was no war, because Hope stopped fighting a long time ago, and if anyone was winning here, it was Hope.  Her hell on earth was over.  She knew she wouldn’t survive this.  She could feel herself slipping away.   She had a peace she’d never felt before, and she knew who was waiting on the other side.   It was time to go home.


Mary couldn’t believe the news the next day.  Hope’s mom had planned such a special day for her, it had seemed to go so well… but that didn’t keep Hope from trying to kill her anyway.  She had nearly succeeded this time, and her mother had been forced to protect herself.  The community had lost a child, and nearly lost one of it’s best warriors, and she had nearly lost a good friend.  All because the system had ailed, and sent Hope home when they knew it wasn’t safe.


Hope’s mother, now free to travel, started giving speeches across the country, campaigning for more services and raising funds for a cure.   She had won the battle in her own home, and she would win this war eventually.

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Back in my day…

Today I was thinking about this study, which came out the other day.

I read it a couple of days ago and didn’t think too much of  it.  It pretty much agrees with what a lot of us have been saying all along, that there isn’t really an “autism epidemic” – it’s just that a lot more people are being diagnosed, as autism is more clearly defined, the ‘spectrum is widened, and the symptoms are more widely recognized.  There are plenty of autistic adults around, in all areas of the spectrum.  Some of the ‘lower functioning’ adults were diagnosed as children, many of them were misdiagnosed with other developmental disorders, but a lot of them were never diagnosed at all, and have just had to make it through life as best they can, challenges and all.

This brings me to what I was thinking about today.  I’ve heard a lot of parents say things that have been very hurtful to autistic adults.  Things like “you don’t speak for my child” or “you’re high functioning, you don’t know what it’s like for my child”, etc, etc.  Parents write blog posts about how their kids can’t do this, that or the other, and can’t be expected to, because they have autism, and how dare the world not conform to their needs?  They get absolutely livid with their parents, or their grandparents, or aunt June, when they say things like “well, in my day, you ate what you were given” and “we didn’t put up with that kind of behavior”.

Parents say “these people just don’t understand” and “they have no idea what it’s like to raise a child with autism”.

But you know what?!  Maybe they do.  There’s ample evidence that there’s a genetic component to autism, and that grandma, the one who raised the father of your son (or perhaps the aunt who raised cousin Billy, or that old neighbor lady with the quirky son)?   She might have had to deal with a lot of the same things you’re dealing with.

But in her day?  There weren’t rules in place forcing schools and insurance companies to provide early intervention therapies, she couldn’t just send him off to professionals to teach him how to eat new things, or ride a bike, or hold a conversation, or speak clearly, or stop banging his head.  She couldn’t afford to take him to McDonalds to get his favorite meal every day, if he didn’t want to eat the food that came out of her garden.  She knew the schools wouldn’t think twice about spanking him for ‘acting up’, so she had to find ways to help him learn all of the necessary skills on her own.

And your hypothetical husband (or cousin, or neighbor)?  His autism is still there.  He’s still got quirky habits, shies away from social situations and annoys the crap out of you with his eating rituals and his fixation on certain subjects, but he he functions, more or less, in society.

Perhaps grandma, or aunt Ruby, or that annoying old neighbor of yours does know something of what she’s talking about.  Autism isn’t some newfangled thing, and you’re not the first generation of parents that have had to learn how to raise autistic children.  The past generations raised these children so well they didn’t even have a name for it, and at least on the higher ends of the spectrum they didn’t even consider it a disorder.  Some children were just more difficult to raise than others.  Perhaps there’s something to learn from them after all.

Most of you know that I consider myself autistic (very high functioning), you can draw whatever conclusion you want about that.  In most areas, I wouldn’t advise anyone to take advice from my parents about parenting, as I’ve been through a lot more than I would ever wish on anyone.  And I do believe that my life would have been much easier if I had known about autism 20 years ago.  Knowing would have eased my mind about who I was and what was wrong with me, and it would have given me a better idea of what types of help I needed to get.

But I wonder, if I had been born in this generation, diagnosed at an early age, put through battery after battery of different therapies… if I my quirks had been excused because of my diagnosis, or I had been stopped from ‘stimming’ every time I went to swing for hours or played the same song over and over and over… if I had spent years in therapy trying to learn to display empathy and look people in the eyes before I was ready… if I had been put in a separate classroom to work on my ‘social skills’ instead of starting kindergarten early (because I already knew everything they taught in preschool) or if I had been kept from starting college early because of fears about my emotional maturity… would I be the same person today?  Most assuredly not.  And on most of these points, I really don’t think I would have been better off for it.

I know most parents want the absolute best for their children.  This is the reason they push for as many early intervention therapies as they can.  They spend thousands upon thousands of dollars on treatments (which often aren’t affective), just to try to help their children beat the odds that say that autistic adults are so much less likely to ‘make it’  in the world. (And don’t even get me started on ‘alternative therapies’.)

At the same time, many of these parents shun the advice of autistic adults and those who raised them.  The amount of disdain they hold towards a given individual seems inversely proportional to how ‘autistic’ that adult seems… is the madness not evident here?!  The ones they want their children to most end up like are the ones they’re least likely to consult.

The next time you snarl and roll your eyes at the advice of an elder, or an autistic adult, perhaps you should check yourself and see what they actually have to say.  And maybe, just maybe, you could better use some of that time, energy and money you spend fighting schools and insurance companies to research what past generations did and work with your child more.

Of course, not every Aunt Betty or grandma knows what they’re talking about when they make snide comments, but perhaps some of them do.  And some of the therapies we use today are definitely better than what they did back then.  I’m not saying therapies and interventions are bad (though some types most certainly are), but I do think perhaps this generation has lost something by shunning the past, thinking autism is a new phenomenon and the book has to be rewritten for raising these kids.

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When Worlds Collide

I’ve been debating about making this post for the past few weeks.  So that I don’t have to repeat a bunch of stuff, please read this rather short posts here and here before continuing.

What I’ve been debating about for the past couple of weeks is whether or not to write a post for “Autistics Speaking Day”.

I’m actually still debating right now, as I write this.  I have a habit of writing blog posts and then deleting them, so if you’re reading this then I guess I decided to follow through (most likely after writing and rewriting a few dozen times) :P

I don’t actually know who, if anyone, reads this blog on a regular basis, or who might read it today or down the line.  I do know that there’s a good chance that family members, old friends, people I met through my business, people from autism groups on twitter, and random strangers may all see this.  And that is the main reason why I’m reluctant to write this post.

I pride myself on being honest.  Completely honest.  I don’t lie (ever), and I try my best not to act one way around one group and another around another group.  Everyone that knows me at all knows that I’m a Christian, and you all have my permission to call me on things when you don’t think I’m living as a Christian should (though I may not agree with your assessment, I will take it seriously).   Being honest is as much a part of my belief system as it is a part of my core personality.  I’m not perfect, but it’s just not natural for me to be dishonest.

But there’s a place where “being perfectly honest” meets “sharing too much”.  Omission is not the same as dishonesty, unless it’s done to purposefully mislead someone.  For instance, you most likely wouldn’t run around telling everyone you have a bad rash on your bum, but if you say “there’s no reason, really, I just like to stand!” when someone asks you why you aren’t sitting down, you’re lying.

That line between being honest and sharing too much can be hard to find, though, sometimes.  And for me, it’s hard to find right now.  I want to share this information, for those participating in Autism Awareness Day on twitter, but I’m not sure I want to share this info for the people I’ve known all my life.  Many of which, I’m sure, will think I’m crazy.  I don’t want to open myself up to (more) ridicule, but I also don’t want to feel like I have to be two different people.

Several years ago I came to the conclusion that I probably have very high functioning Asperger’s syndrome (Asperger’s is on the autism spectrum, in case you didn’t know).  I came to this conclusion after a lot of research, though I’ve known about, and identified with, autistic people for most of my life.  Until a few years ago I never considered that I could be on the spectrum, because, well, I communicate too well.

I was weird in school.  I’m still weird.  Ask anyone that knows me (except Robin, who thinks I’m a saint for some insane reason), and they’ll agree.

I grew up feeling like crap.  I hated myself.  I wanted to die, sooner rather than later.  I felt like I was stuck in a world where I didn’t belong, I was in pain all the time (from a neurological disorder, see this post) and I just wanted to go back home to God, where I belonged.  (Okay, I still feel that way most of the time.)

But the only exposure I had to autism was classic autism (little kids, who I totally “got” and could play with for hours, but who were mostly nonverbal) and the “autisic savant” stories like the movie Rainman depicts.  I remember wishing as a teenager that my math skills were just a little more advanced (I finished college level Calculus I at Purdue in 4 weeks the summer after my sophomore year of high school, but my skills weren’t good enough to qualify as ‘savant’), but I never really thought about it beyond that.

I was the smart kid.  I helped teach classes when the teachers were negligent, I helped tutor other kids when they just couldn’t get something, or they were scared a parent would beat them for having grades too low.  I asked questions in class every time a teacher was vague, not because I didn’t understand, but because I figured someone else might not understand — and besides, it’d make the teacher better at her job.  I had exactly one friend in elementary/jr high, but I treated her like crap (I didn’t understand that’s what I was doing, I didn’t know any better).  I got along with most everyone else, I just didn’t consider any of them friends (and I’m pretty sure the feeling was mutual).

I always felt like something was wrong with me.  I never felt human.  I still don’t, most of the time.

I thought I was crazy.  Or everyone else was crazy.  Or maybe both.

I never dated.  I had a whole list of reasons why I never dated (I’d have listed them if you’d asked me), but it really came down to the fact that no one ever asked.

I simply could not comprehend why anyone would be upset about something sad happening in a movie.  It’s a story.  (see my previous post)

I never talked to anyone about how I felt inside until I was 16.  It really just wasn’t done in our family.  We would talk about things, just not the deeply personal kind of stuff.  Maybe other family members talked about that kind of stuff and I just missed it, I don’t know, but I don’t think so.

When I did try to talk about these things I found I couldn’t.  I met a guy named Ryan at church camp that summer, and he seemed really kind.  He was a counselor that summer and had the reputation for being a good listener, and I was desperate for help.  I tried to talk about what was going on in my head and all I could find was silence.  It hurt to try to talk.  I’m not sure what made him stay there, trying to coax it out of me, but he did, and I’m forever grateful to him.

At one point I gave up, and tried looking him in the eyes.  I’d never done that before, really looked someone in the eyes.  They say the eyes are the window to the soul, and I’d always felt an extreme need to protect that.  I would look at people, I would give “eye contact” but I would never hold that contact long enough for anyone to see inside.  I would look at a person’s eyebrows, or the whites of their eyes, or at something behind them.  I looked him in the eye though, forced myself to, and held the gaze, hoping that by letting him see he could just know what I was feeling and I wouldn’t have to try to find the words.  That hurt more than trying to talk, and I don’t think it worked.

I tried to contact him after camp, using letters, and found that it was much easier to write things than to try to say them.  I tried to explain the eye contact thing to him.  I think he misunderstood my intentions,  I’m still not sure.  But he wrote back, he kept in touch, he was even so sweet and helpful that he’d stand there on the phone for hours listening to me breath while I tried desperately to find the words for what I needed to talk about.  He stuck around for a while, always there when I needed him.  Then he broke off contact abruptly and completely.  I still don’t understand why, but there are two years I would not have made it through without him.  Ryan, if you ever read this, thank you.

I’m a pretty intelligent person.  I’ve only ever done one official IQ test and they never told me the results, but it got me put into a “gifted ed” program.  But the first time I took an “emotional IQ” test I think I scored somewhere in the bottom 30%.  That’s what got me started looking at Asperger’s.

And suddenly, perhaps, everything made sense.  Perhaps I make sense.  Perhaps I’m not just crazy, perhaps my brain is just wired differently than everyone else’s.

The “4 going on 40” phrase my mother always used when introducing me to strangers as a child suddenly made sense.  My inability to lie, and my tendency to take everything literally make sense.  The compulsion to hide in a corner and rock (which I rarely did, but often felt like doing) made sense.  My need to get lost in patterns, and my being completely mesmerized by geometric screen savers and spinning things made sense.  My inability to talk when upset made sense.  All those meltdowns as a child made sense.

Of course, just because it makes sense doesn’t mean it’s right.  I’ve not been officially diagnosed.  I don’t trust psychologists (for good reason, I could tell you some really interesting stories), and I’m over 30.  A diagnosis at this point wouldn’t do me any good, and the people who don’t believe if now would still doubt it even if I had a diagnosis in hand.

Besides, I have the most awesome friend in the history of friendship, and he has dedicated significant portions of the past decade of his life to helping me grow as a person, learn how other people think, and overcome some of my more challenging issues.  (Oddly enough, he doesn’t believe I have Asperger’s either, but he provides more help than I’d ever get from a therapist.)

So does it really matter if I have Aperger’s?  Probably not.  But would it have helped to know sooner?  Absolutely!

Had I known that my brain was perhaps just wired differently than everyone else’s, I might not have breached untold numbers of social protocols in my teenage years and my 20s (because I would have known to spend the time learning, then).  I might not have ended up in a situation that scarred me so deeply I had to spend 10 years recovering.  I might have realized decades sooner that stress sets off all of my autistic tendencies, and calling a good friend when I see it starting can save me an entire day of banging my head (literally) against a wall.  Ryan might not have disappeared on me.  I might not have treated my best friend like crap when I was in school, without even realizing I was doing it (so sorry, Jenny).

My life might be different, better, now, in so many ways, had I only known.  Just knowing it is a possibility, whether it’s definite or not, has helped me tremendously for the past few years.

So I guess I’m going to go ahead and post this, and I might regret it, but at least I was honest.  If you know someone who shows autistic tendencies you may be afraid to say anything.  If it’s a young child let it go, no need to freak out a parent.  But if it’s an older child, and it seems obvious, say something to the parent.  If it’s a teenager, say something!  Even just a simple “have you ever heard of autism?  Perhaps you should look into it.”  Sure, it might be embarrassing, especially if you’re wrong, but you never know how much grief you could save someone.


Filed under Disability

Thoughts on Sarcasm

Lately I keep starting blog entries and not finishing them, so I’m going to try a new thing.  From now on I’m going to give myself an hour per entry.  If I’m not done in 55 minutes I’m going to spend the last 5 rushing to get to the point, and I’ll post it at an hour, done or not.  Hopefully this will help me curb this annoying habit of half-written blogs in text files lol

I was in the shower today and instead of singing like I usually do my mind got stuck on sarcasm, why we use it, and how we can help autistic children (and others) understand it.  Here are my thoughts…

I think we use Sarcasm, primarily, as a defense mechanism when we’re annoyed.  When your child asks you for the 15th time when you’ll get there instead of ripping your (or their) hair out you just say "we’re already there, honey, can’t you tell"?   I could give a ton of other examples, but the ones i could think of all followed this same basic pattern.  Someone asks a stupid question, or makes a stupid statement, which we think they should already know the answer to, or we think they should know better, and instead of venting our frustration in a less-than-pretty way we pop off with a sarcastic comment.

When we use sarcasm with children it can actually be a really great teaching tool.  Most people aren’t going to be sarcastic with their infants or toddlers.  That’s silly, they can’t understand sarcasm, so we usually don’t bother (I imagine the same is true with non-verbal older children).  Besides, your infant/toddler isn’t likely to say something stupid anyway, and if they did they’re young enough you know they wouldn’t understand it’s stupid.  By the time most kids are old enough to start asking "Are we there yet?" 500 times in 10 minutes, though, or "Mom, are you going to feed us lunch today?", they’re also old enough to "get" sarcasm, or at least to start learning it.  So we, probably without conscious thought, start to use it with them.  We start saying things like "no, honey, I’m not going to feed you lunch, you aren’t *really* hungry anyway, are you?"… fully expecting their natural reaction to be shock, and then realization: "yes, I’m hungry!  you’re just saying that, aren’t you? are we going to have lunch *soon*?"  

Most kids can process two opposites well enough to realize that the mother who loves them dearly isn’t likely to just not feed them.  After they get over the initial shock they think about why you’d say such a thing, and it dawns on them that if Mom loves them so much, she’s probably not going to make them starve, and they probably asked the wrong question in the first place.  After enough similar instances (because kids take repetition to learn), the child eventually learns not to ask the annoying questions so often, life is less frustrating for everyone.

For autistic children, though, and children with other learning difficulties, this process doesn’t work so well.  If you tell an autistic kid you aren’t going to feed him, his reaction will often be panic.  He’ll be left with two opposites in his head "Mom loves me" and "Mom isn’t going to feed me lunch today".  This doesn’t compute.  "Maybe Mom doesn’t love me after all."  "What if she doesn’t feed me supper either?"  "But I AM hungry!  I wouldn’t have asked if I wasn’t hungry!"  And it can spiral from there.  Mom spends a while trying to calm the child and make sure he understands that she does love him and she will feed him and she was just being "sarcastic" she didn’t mean it… eventually he calms down, but without the ability to read body language, or make the jump that explains what caused Mom to respond sarcastically, he’s left not understanding why his mother suddenly lied to him, or when it’ll happen again.

I think most parents with children on the spectrum have been through this type of situation, repeatedly.  It’s not that you’re trying to annoy and confuse your children, it’s just that sarcasm is a natural response to frustration, and stopping it isn’t easy.   So what should you do?  I for one do not think you should train yourself not to be sarcastic.  

I don’t think that helps either one of you.  That child, eventually, is going to have to be let out into the world, so to speak, if he’s not already, and he will encounter sarcasm there.  This is a life skill he needs, and it will help him in a lot of areas, he just needs the tools to understand it.  

Most children, no matter how bad their autism or other disabilities may be, aren’t incapable of learning things, you just have to approach them right.  

When you find yourself being sarcastic with your child (and if you don’t notice beforehand, his reaction will tell you you were sarcastic), after you calm him down, take the time to help him understand what happened.  Explain that you were being sarcastic, define sarcasm for him again, but don’t stop there.  Remind him of what he said, and explain precisely why it was frustrating to you.  Explain that your reaction to that frustration was to say something you knew he should know wasn’t true, and explain that that was supposed to trigger him to think about what he asked/said and whether it was necessary.  Do this every time.  Eventually he’ll remember to think about what he said before panicking, and he’ll begin to internalize the concepts behind sarcasm.  

It may take a while.  Just like it can take a (long) while to get a child potty trained. But once your child grasps sarcasm watch out, he’ll probably use it a lot, and better than you do (lol).

If you have further thoughts on this, or you think I’m wrong, feel free to share in the comments.  I’m certainly not a professional on the subject, and I’m not even a parent, but I am good at using sarcasm, and I think I understand autistic kids better than most.


Filed under Disability, Tips & Advice