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Autistism – a look INSIDE, with a personal preface.

One of the most frustrating things, to me, about even the possibility of having Asperger’s, is that there’s an automatic assumption that just because I don’t communicate my thoughts and feelings the same way as other people, that I’m somehow less intelligent. Because I’m “tactless”, I must just not know any better. People feel the need to exclude me from conversations and events because they really don’t want to have to listen to me say exactly what’s on my mind at any given moment in response to what’s going on around me (I’ve actually had more than one teacher in my life tell me that they were never going to call on me again, because I talked too much and no one else ever got a chance to speak).

Some people find it hysterical, the way my internal monologue is connected directly with my mouth, without the benefit of a real filter, particularly when I’m tired. Sometimes I make jokes about it. It seems like, in certain company, the bluntness is actually something that people want. But I have trouble figuring out who would appreciate it and who wouldn’t. If I’m around people for any extended length of time who think it’s funny when I bluntly point things out as I see them, then it’s hard for me to go back to NOT saying what I think in response to every single thing that comes out of someone else’s mouth. A good example of this is that in my 10am class, I’m pretty well encouraged to speak my mind often. So in my 11am class, it’s really hard to keep myself from sharing my opinion about EVERYTHING that comes up. But the professor in the 11am class is usually pretty good at maintaining a system of “taking turns” speaking…I’m grateful for that, actually, because if that wasn’t the case, I’m afraid I would never shut up, because of the freedom I’m allowed just an hour earlier.

I’m trying to use the simplest terms to describe this, because I don’t know how else anyone would understand what I’m trying to say. The complexities of what I think vs. the simplicity of my emotions (most of my anger is really frustration, as is my sadness…while most of my positive emotions can always be described as simply “happiness”) kind of war against each other.

Isn’t it more confusing to say something like, “I masticated a portion of bleached grain that had previously been mixed with a conglomeration of other materials and then superheated in a metallic container until proper consistency had been achieved for consumption” instead of, “I ate a piece of bread”?

That’s how I feel when I’m trying to explain my emotions. My emotions are like, “I ate a piece of bread”, but people don’t believe me. They want the long diatribe of complex phrases and words, and when I try to deliver, they then have no idea what I’m talking about. They want it both ways. They can’t have it both ways. Then, because they don’t understand, I’M in the wrong.

All of this leads to the following:

There’s an article, complete with video, about an autistic woman named Amanda Baggs, a 27-year-old who lives in an assisted-living facility and has not spoken a word since her early 20s.

The video opens up with her humming and wailing an eerie sort of tune, while the camera focuses on many of her repeated behaviors, such as flapping a receipt in the air, and rubbing an open book on her face. Then, with the continued montage, a message begins to appear.

Amanda CAN communicate in English, via typing through a program that “speaks” for her.

Through this communication, Amanda points out that her “weird” actions are the ways that she communicates and interacts with her environment. There’s nothing symbolic about her playing with a stream of water, for example: that’s just what she’s compelled to do, because it’s there, and why can’t she play with the stream and feel it going over different parts of her hand? Why can’t she study the noises that the water makes?

Why can’t she chew on a pen to explore the texture with her tongue, while at the same time realizing the taste and hardness of the plastic?

What’s wrong with her choosing to stand in a room, rocking and flailing her arms, taking in the stimulus in the way in which her brain has “decided” to function?

Autistics are said to have IQs of less than 70 in severe cases.

They’re said to not understand what’s going on in the world around them.

They’re said to be “retarded” and “close-minded” and “unwilling to interact with others”.

In mild cases, such as those with Asperger’s, they’re said to simply be unable to “learn” how to communicate effectively with others, and unable to “learn” how to express themselves in ways that are conducive to society in general.

Do you know what I was thinking when I was watching that video, even before reading the article all the way through, and before her explanation began?

I was thinking of all the times in grade school where I was chastised and even publicly humiliated by my teacher for chewing on my pencils. The taste and texture of the wood compelled me to chew on them. I didn’t necessarily want to, nor was I worried about splinters or anything else – it wasn’t the act of chewing that was important. It was the information I got from chewing. Same with paper – I chewed on paper for YEARS. Still do, sometimes. Several of my childhood books have whole strips of paper missing from the sides, because I would subconsciously just pull the strips off, put them in my mouth, and reduce them into little papery pebbles, which I would then spit out anywhere from a few minutes to a few hours later. Gasoline smells “dangerous” to me. I don’t know how else to describe it. Same with anything that has any sort of ethanol, alcohol, or flammable fluid in it. I have little miniature panic attacks that subside into this strange feeling of calm, like I need to take a nap, after smelling some of those things.

Anyway, I don’t expect you guys to know what I’m talking about – I just wanted to give some specific examples.

But as I watched, I had flashes of memory where I absolutely felt compelled to do something, because I didn’t feel there was any other way for me to understand what was going on. And I UNDERSTAND what she’s doing. I GET it. I did before she began her typed explanation.

The explanation solidified things, and I found myself slack-jawed, in awe that she was able to put things so succinctly.

But WHY NOT? People with autism aren’t retarded – they just don’t communicate in the same way as other people.

And she’s right – while I’m not an advocate of the PC-ness that’s overtaken many aspects of this country, I can agree with one thing: rather than spending time, money, and resources teaching a gorilla sign language, why don’t we use those resources to try to interpret what our friends and family members with autism are trying to tell us? WHY NOT?

I mean, really. What do we have to lose? Why are we so scared of our own kind when they don’t do exactly what we want them to?

Just because I’d rather chew on a pencil than write with it, does that make me a threat? Because Amanda likes to smell books rather than look at them, is she a force to be reckoned with?

Who says that an IQ of less than 70 means that someone isn’t human? It just means that they haven’t learned to “translate” our language yet. IQ tests assume a relatively narrow upbringing, with a specific set of criteria. If you don’t meet all of these criteria, you’re pretty well screwed. But it’s just one test. ONE TEST. And somehow that one test has the power to completely disenfranchise an entire class of people who may be a little more cognizant of it than we previously thought.

Why is that?

Can you imagine if Albert Einstein had been discredited because he didn’t brush his hair or wear clothes that properly fit him? I mean, socially, he wasn’t communicating very well – he was acting in a manner that suggested a sort of asocial nature that wasn’t at all in keeping with what people expected of him, especially at that time. But it was what was in his mind that mattered. His thoughts, his ideas, and his insights.

There’s a possibility that we have another Einstein lurking in the mind of someone who just can’t quite express their thoughts in the way we’re used to hearing them.

Does that possibility scare you or thrill you?

10 comments to Autistism – a look INSIDE, with a personal preface.

  • Breda

    It thrills me completely!

    Oh, Squeaky, this is the most fascinating, wonderful thing I’ve read in a long long time. Thank you so much for sharing your thoughts.

    I’m can’t smell odors properly if there is too much noise in my environment and I’m also not very good at forming verbal sentences if my brain is busy doing non-verbal things. It’s like the words are all there, and I know what I’m thinking/trying to say, but they come out of my mouth all jumbled and backwards – as if the switch in my brain got stuck or something.

    So, although I cannot really know what you or Amanda experience I can understand how valuable information is there inside your heads, but it’s just a matter of translating it for the rest of us that can prove difficult. Everyone’s brain is wired differently, and I think it would be a terrific thing to explore.

  • Zhu

    Great read and this post is so honest!

    I actually never thought of autistic people as “retarded” as you put it, but rather of people with high IQ, just communicating differently. We’re all different anyway…

  • Squeaky Wheel

    Breda – Me, too! I can’t have any distractions while I’m doing anything that requires me to concentrate, UNLESS it’s just an action I’m doing with my hands, like sewing or painting. THEN noise is welcome, because it keeps my brain occupied so that I don’t over-think the physical process and screw something up. I also have the “talk-over” problem, where my words will just…kind of…not come out right if I’m not focused entirely on what it is I’m trying to say. I appreciate the comment – I’m glad that you “got” what I was trying to say.

    Zhu – Thanks! I don’t think I’ve ever thought of them as “retarded”, either…then again, I saw something in common with them when I was younger, so that might have something to do with it. We’re loathe to insult those who share our traits, especially if they’re traits we feel like we might have to be ashamed of in popular culture…

  • Great post squeaky! I’ll have to read it again when I’m not so tired.

    “People with autism aren’t retarded – they just don’t communicate in the same way as other people.”

    I completely agree with this. They are absolutely NOT retarded. Depending upon the severity of their affliction they’re basically “trapped” in their own minds. They can think, experience the world around them, and learn just like anyone else. It’s conveying those things to others that’s the problem.

    I also think everyones mind is wired a bit different. I, like Breda, have a hard time expressing thoughts verbally while doing some other task. Hell, I have a hard time expressing myself verbally at all. It’s strange. My thoughts, feelings and emotions can flow onto paper (or blog) with ease, but if they have to come out of my mouth it’s as if dam exists in my mind >> mouth connection and only a few random & unintelligible bits can make their way through.

    There was a heartwarming story on the news recently about an autistic woman who’s family found could communicate perfectly well (although slowly) by typing on a computer. Her mind really was “there” and she knew what was going on, she just couldn’t tell them until now.

  • Oh, and I used to constantly chew on pens & pen caps when I was younger. I liked eating elmers glue paste too. yeah, I was / am weird…

  • Great read.

    Professionals are taught that autism is probably unrelated to IQ, more or less–nowadays–but it will take time for that to filter through to the public. I find that most people either consider autism to be retardation (“Oh, yeah, I know, it’s not technically the same thing, but you know, in the *real* world, basically the same, right?”) or they think most people with autism are savants (“That’s the one where you can multiply thousand-digit numbers in your head, but otherwise you’re retarded, right?”)

    Have you read anything by Temple Grandin? I imagine she’s much further along the spectrum than you might be, but she’s well-known among educators because she describes what it’s like to finish her doctorate and become an authority in her field while displaying obvious autism with all the communication problems it creates.

    There’s a newer book, too, called “Born On a Blue Day,” by a gentleman from England. He’s exceptionally good at describing how his mind works and why he communicates the way he does. He is a mathematical savant, so it doesn’t apply 100% to most people trying to deal with autism, but there’s a lot of insight there.

    One of the most frustrating things about working with kids with autism is knowing how much is going on behind their eyes that they aren’t showing you.

  • On “retarded,” my late uncle was severely mentally retarded at about the mental level of your average 4- or 5-year-old (he lived into his sixties).

    To paraphrase Lloyd Bentsen: Squeaky, I’ve known a retarded person. He was my uncle. Squeaky, you’re NOT EVEN CLOSE to being a retarded person.

    Incidentally, overhearing casual use of the word “retard” as a pejorative is one of the few things that will bring me to a raging fury.

  • I thought about getting an official dx, m’self, once I had that “Bingo, that explains it!” revelation.

    By that time, I was well past fifty, and most people who’d known me as a child were dead. I talked to the CARD people in FL, who told me that a dx would likely cost me a couple of kilobucks, and not get me any services or accommodations anyway. That, and having an official note of mental weirdness on my Permanent Record, dissuaded me from seeking a dx.


  • Umm, I should have written, “That, and the prospect of having an official note…”

  • P.s. Look up Miss Baggs’ old posts on, where she wrote as “Sggab the Slug”, among other pseudonyms.