Tag Archives: aspergers

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.

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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.

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