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Sunday, December 31, 2006

What is Autism -- In Conclusion

Why Neurodiversity

Technically it's tomorrow, though I haven't slept yet. My head's rattling, full of thoughts, so I'm just going to get it down and hopefully my head will be quiet. In order to do this right, I have to get very personal and it might not seem to make sense at first, but I guarantee, I'm getting to it.

I was a "good" child. I did well in school, got good grades, worked hard at a variety of small-scale jobs, and was generally obedient. That's why it surprised everyone when I called my house, talked to my brother, and told him, "I'm going to Milwaukee. The car [my dad's car] is at the supermarket. I'm at the bus station and I've got to catch my bus. I love you all." *click*

I don't even think Mark thought I'd go through with it, though he at least got a warning. You see, I lived in southern Minnesota at the time, and Mark was going to college in Milwaukee. Had my father had his way, he'd have driven out there and dragged me back. But, I was eighteen. Still going to high school and still living at home, but eighteen nonetheless. Luckily, it was winter break so I didn't miss any school.

All told, I believe I was gone for a week. When I came back, Mark and I were engaged. I asked him, because he had this pesky rule about knowing someone for five full months first...and I'm not very patient. He said 'yes,' which was mainly a technicality, because we'd been talking about it for quite awhile. This was December 1997, and by March 1998 we were married.

A lot of people were against this. Not Hatfield and McCoy style, but against it nonetheless. You see, Mark was ten years older than me, hadn't "accomplished" anything, i.e. he wasn't established in a career (and still isn't), and *gasp* he had a diagnosis of bi-polar disorder. So, me being the good little girl who had so much to look forward to... It wasn't the right match.

However, I'm also stubborn. I follow my heart. My heart belong to Mark. And if that meant flipping off everyone in both our families... Luckily it didn't come to that. We had our small wedding, despite our families' "better judgement" and we were together. We were poor. We're still poor. And...I don't regret it for a moment.

It's been nine years since I made that grandiose decision in the middle of a Greyhound bus...lets get married, soon! I've come to realize some of those seemingly friendly words of warning held something sinister beneath them. That notion that I was throwing my life away by marrying Mark was not just my father's silly thoughts...those same thoughts were going through the heads of some of his family too. That's a scary thought for me. It really is. While out of the mouth comes, "You can do anything you set your mind to," while at the same time de-valuing him because he had a mental illness...it makes me shudder. It makes me hurt. And it still hurts and humiliates my husband. And that just pisses me off.

I recently learned that one of these "well-meaning" people actually prayed that I would miscarry our first child together, and that when Willy was diagnosed with autism that this prayer was somehow justified. I just found this out. And, it's a good thing. Because, had I known then... Sometimes my tongue gets away with things it shouldn't. It can be sharp as a sword, thrusting true and deep. There's always fall-out, though, so I try to keep it under control. Had I known, I would not have made any attempt to keep it under control. Even now, it's hard.

Why neurodiversity? Why do I value my children, neither despite nor because of their autism, but simply because of them? Why do I value my husband, neither despite nor because of his bi-polar disorder, but simply because of him? Why do I find it so easy to slough off the words of the "experts" and embrace what I know is true in my heart?

The answer is simple. My heart didn't steer me wrong when I got on that bus. It isn't steering me wrong now. I define autism as a human difference, not a neurological/psychological disorder, because I know that disorder is a means of de-valuing human beings much to the detriment of the world. My husband is a very intelligent, talented man...but something inside him is shattered, broken and all that talent and all that intelligence is stuck, trapped by hurtful words and deeds that have broken him down bit by bit over long periods of time. I will happily spend a lifetime helping my husband recover and fly; but I will NOT let my children be cast aside and trampled upon like their father. I couldn't save Mark that horrible injustice, however much I wish I could, but I will save my children from it.

I've seen prejudice in many forms. I've seen many people broken and shattered upon the terrible word, and all that this word entails. I don't like prejudice. I don't like it in any form. And, I truly believe fighting one form of prejudice is fighting all forms of prejudice...just a little bit at a time. This is a worthy fight. It's worthy of my energy and my passion. It's worthy of my drive. It's a superior fight to the fight against autism. I don't want to fight my kids; I want to help them. One of the ways I intend to help them is to pave a way for them, and their father, that is as free of prejudice as I can possibly manage. This, for me, is the fight for neurodiversity -- accepting those who are neurologically different, diverse as we are to accept all other diversity, with love, compassion, understanding and accomodation.

If my way of defining and describing autism seems different than you've ever heard or seen before: GOOD!!! I'm not alone in this, but I am willing to be a voice that gets the attention of those who haven't seen it. I'm eager to be a voice that gets some little bit of attention, better for my children to make their way in this world in their own time. Better for my husband to make his way in this world in his own time. So, yeah, I see things a little differently than many. I certainly see things differently than the medical professionals who deem themselves "experts" of something they interact with strictly in a trial basis. I see autism up close, every day, times three. I live autism, and I'm glad.

My family is neurodiverse and I have absolutely no regrets.

(P.S. If any of y'all want me to do a similar series that is neurodiversity-specific in the near future, just let me know.)

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Saturday, December 30, 2006

What is Autism -- Part 5

What Autism is NOT

Sometimes it helps to express what one does believe, and sometimes it helps to express what one does NOT believe. If you express both together, then you're more likely to be communicating effectively. For autism, I feel it is very important for me to communicate effectively, because the fate of my children is wrapped up in how others perceive autism to be. That is overcomeable, but the difficulties one must overcome when one is autistic -- mainly attaining enough shared context to interact well -- is enough, the battle for acceptance and understanding is extra weight. It is this weight I hope to bear for my children, at least as much as I can.

1) Autism is NOT a disease.

Perhaps that goes without saying, but now I've said it. I've never heard
of anyone excluding an autistic individual because they were "diseased" or
"contagious," which is good, because they're not. I don't want anyone to start either.

2) Autism is NOT a demonic possession.

This, unfortunately, does not go without saying. People believe it, and children die because of it. This isn't the only story I've seen of it, but it is the closest to home. Why people are so ready to believe that their autistic child is possessed by demons, that the demons are the source of their autism? How someone could justify sitting on the chest of a child for two hours, suffocating the child, and calling it God's help "through prayer"...this I do not understand.

I pray for my children all the time: I fold my arms, bow my head, open my heart to the Lord, and fill my head or my lips with the words of my thanksgiving, my supplication, and my praise. I hold my children in my lap while I pray; I hold their hands as they lie in bed as we pray together; I put my hands on their heads while I pray when they're sick; but I never sit on them to pray or use prayer as an attack on their personhood. And, un-Christian though it is, if someone were to call my children demons to my face, I'd have to seriously consider punching them in the snout; I probably wouldn't do it, but I'd have to seriously consider it.

3) Autism is NOT a death sentence.

I do have to amend this one slightly, autism is not a death sentence any more than being human is a death sentence. Autistic people will die, just like the rest of us; however, they won't die faster or more painfully because they are autistic (exceptions for idiot parents who kill their child, or allow others to kill their child...simply because the child is autistic). There is nothing especially fatal about autism. Treating autism like death...I don't get it. I try, I do, because it's so damn common, but I don't get it.

4) Autism is NOT a cage.

Okay, so this one... Parent's sometimes express their own need to rescue their child from autism, to get the child out of autism, that their child is somehow trapped in autism, like a cage. This I understand. I can understand why it seems that way. For a while I even shared this notion of autism trapping the more interactive child beneath its weight, but then I really started seeing my children for who they were. One of the things all four of my boys share is the tendency to laugh out loud at something that seems like nothing. Brandon and Willy are able to articulate the humor they experience, even when they're unable to "share the joke." However, Alex...Alex is the most "profoundly" autistic person in our home, and he is also the most genuinely happy, joyful person I've ever met. Sometimes, it seems very selfish of me to want to help him to learn to interact with this world full of sharp edges, complications, hate and prejudice. Sometimes, however, I feel that if Alex could bring whatever he sees into this world that we can share it, then the world would be so much the better for all of us. Alex is not trapped.

5) Autism is NOT an affliction.

Prague Twin, a friend who's been following me throughout this series, has already reached this conclusion. He's already come to understand this. And I thank him for that most excellent compliment. Autism is a difference, a state of being that we're unfamiliar with, unless we try to understand. But, it's not an affliction. If Alex were afflicted with his "most profound" autism, would he be so happy? If Ben, my baby, was afflicted with autism, would he get so much joy from simply being himself? If Willy was afflicted with autism, would he be so proud of his accomplishments, those that are not despite, but because of his autism? I don't think so. I've seen many autistic children. I've seen videos of autistic children. They all have the "temper tantrum" moments. But, you know what? So do "normal" children. My ten-year old, "normal" step-son still throws the occasional temper tantrum. He also experiences joy and happiness. Autism doesn't afflict, but the prejudiced attitude with which some would treat autistic individuals does.

6) Autism is NOT curable.

And that's what it comes down to. Autism is a state of being, part of the person, and thus incurable. Would you cure someone of blackness? Would you cure someone of blue eyes? Would you cure someone of being more math smart than word smart? Would you cure someone of being athletic? Would you cure someone of being clumsy? Or of being a "nerd?"

Or, better yet, to use David's example, would you spend hours and hours each day to cure someone of their blindness? Or, would you spend those hours teaching them how to cope with their blindness, and interact with the world despite their blindness, and through their blindness? I choose the latter. I would rather help my children be who they are and interact with the world, then to change who they are so they are somehow more "worthy" to interact with the world.

Now, think back for a moment to the diagnostic criteria (DSM-IV) that I shared with you. You will find a list of traits, with a need for at least some of them to be found to be autistic. They don't know why, or how these traits come about, they simply know an individual is autistic because those traits are there. It reminds me of "flu-like symptoms." Flu-like symptoms means you're sick, right? So many illnesses and medical conditions involve "flu-like symptoms." And yet, the most memorable time I had "flu-like symptoms" was two weeks after my wedding. I felt terrible. I was sick to my stomach, throwing up, achy and tired.

I was pregnant!

From those flu-like symptoms, I gave birth to a wonderful son I named Willy...and my life will never be the same, and I will never, never, never regret it.

Tomorrow I will post the final segment of my series, What is Autism -- Part 6, Why Neurodiversity.

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Friday, December 29, 2006

What is Autism -- Part 4

Sensory Integration Disorder

A student and a teacher are walking down the hall. The teacher's hand rests gently on the student's shoulder, exerting a little pressure to guide the student in the direction he/she should go.

Nothing unusual here, right? It happens just about every day in nearly every school all across the United States. But, wait...

The child flinches away, shouting, "Ow! You're hurting me!"

"No, I'm not," the teacher says. The teacher reaches out for the child, who nearly bumped into another student.

Is the teacher right? Did the teacher hurt the child? The teacher was, after all, gentle, using a light touch and a little pressure. The teacher didn't do anything wrong (unless, of course, there's a no touching policy).

Perhaps, like the teacher, you would assume the child is lying to get attention, being belligerent, or over-reacting. However, if that child has sensory integration disorder, then it is distinctly possible that the child's body registered this light, gentle touch as painful.

Most of us have heard the journalistic axiom of conflicting witnesses: If there are five people at a car crash, and you interview all five people, you're going to get five different, potentially conflicting descriptions of what happened. The reason for this is that each individual perceives the world through their own unique set of senses. That perception is then processed by our individual brains, translated -- however our brains do it -- into memories, and recalled and expressed at a later time. No two people perceive exactly the same thing. And yet, it's a very human tendency to assume that everyone else experiences the world exactly as you do. But, in truth, we each experience the world differently; individuals who function through the lens of sensory integration disorder can experience this world very differently than normal.

Does it hurt to brush your teeth? Normal response: Only if you're brushing too hard. But, is that true? For those of us who experience pain when brushing our teeth, myself and my children included, is it the force involved...or the sensitivity of our mouths? Does it hurt to get your hair or finger nails cut? Again, only if you're doing it wrong, unless...

It can be difficult to imagine how someone else experiences the world. To put yourself in their perceptions. It takes effort and understanding, but it is possible. First, you have to ask questions. One thing I found when I started asking these questions was that how experienced the world, how my senses perceived daily living tasks was, in some instances, very different from normal. Understanding what normal is, and where you yourself deviate from that normality, helps to understand others who deviate from that normality in different ways. The more you probe about what normal is, the more likely you are to find ways in which you deviate from that normality. However, individuals with sensory integration disorder experiences many more abnormalities, usually to a greater extreme.

For instance, Brandon, Willy and even Alex love to play in the ball pits. You know the type...plastic balls, trapped in a cage-like netting with padding around it. Usually it's like a mini swimming pool, big enough for little kids to nearly drown in...if you could drown in balls. My older boys absolutely love playing in these contraptions. However, Ben abhors them! At the first scratch of plastic ball against plastic ball, Ben screams. He continues to scream as long as he can hear the sound. It literally hurts his ears.

They each have their sensitivities. Willy, for instance, cannot stand the fan in the bathroom. He'll put his hands over his ears and say, "Turn it off! Turn it off!" Alex is more sensitive to touch. The sharp angles of a pencil in his hands is painful to him. A hug, at the wrong moment, can hurt. He fluctuates back and forth between needing lots and lots and lots of touch, to needing no touch at all. Ben doesn't like wearing clothing. Alex can't stand pudding or jello or anything mushy in his mouth. The list goes on and on, different for each child.

This is sensory integration disorder, also known as sensory integration dysfunction, or simply SID. It's supposedly co-morbid with autism, and yet I've never met an autistic individual who doesn't have some "abnormal" sensory issues. While I recognize and emphasize that this is not a scientific sampling by any means, it does give me cause to wonder. Is the context issue that I find so prevalent when looking closely at autism related to these sensory perception differences? I think so. Jumping to conclusions? Perhaps. But, considering the kind of research that would tell us hasn't been done...conclusions without scientifically established fact is all I have.

This is why I feel it is important to take a look at sensory integration disorder when you look at autism. There is something that, at the very least, ties them together more frequently than you find in normal circumstances. Someone can experience sensory integration disorder without autism, but the chances of someone with autism NOT experiencing sensory integration disorder seems rather small to me. In that, they have a link that isn't, to my knowledge, established with anything else.

***There is a link to autism and mental retardation, however I think this link is presumptive, and arrogantly so, based more on the fact that an individual who doesn't relate with/understand the context of the tests involved are not going to score well than on a lack of innate intelligence.***

So, sensory integration disorder. What senses are involved? Let’s count them: tactile, visual, auditory, olfactory, taste, pain, proprioception, and vestibular. Two of these may seem odd to you. Proprioception is one's awareness of space; where one's body is in space, movement, posture and pressure are all matters affected by proprioception. Vestibular refers to a particular part of the ear that acts as a balancer. Balance and equilibrium are both affected by perceptions derived from the vestibular system in the body, which works hand in hand with proprioception, and all our "regular" senses to help us interpret our environment. If any one of these senses are sending you "faulty" information, i.e. information that doesn't jive with the perceptions of others, then you're going to react to the world differently that those others do.

It is difficult to cope with certain things through such a lens, however there's also a lot of homeopathic-type things that can be done, and easily so, to compensate for these differences. Understanding and properly applying this veritable smorgasbord of sensory regulation techniques can dramatically improve the quality of life of the individual and their connection to the world. By helping them to better understand our context by alleviating some of the ways they suffer from our environmental norms, we can help attain a shared context that allows such individuals to participate more fully in this world we share.

If you are a parent of a child with autism, my first and foremost suggestion is to contact an occupational therapist, with a strong prefer for one trained to work with "disabled" children. Such a therapist is likely to know about sensory integration disorder, and is likely to know how to counter-act it...or, will at least be able to get you started. Another great resource is a book called The Out-of-Sync Child, which can tell you much more than I can in a single post. The sequel, The Out-of-Sync Child has Fun is also a great resource for regulation ideas.

So, what is regulation? Generically, it's common enough, but when you're talking about sensory regulation it means to help the individual obtain a sense of peace with his/her body. For my boys, this usually means two things: 1) Lots of pressure, 2) lots of movement. Pressure via hugs, bear hugs, squishes (hugs with pillows), crashes (jumping and flopping on furniture, pillows), and hug vests (spandex-like vests that "hug" the child). It can also mean, weighted blankets, weights on ankles or wrists, or weighted vests. It can be tugs-of-war, carrying heavy things like a gallon of milk or a laundry box full of toys. It can be a variety of things. Giving their muscles the full-on sensation they need...that's the essentials of it. And motion, that's swinging, and spinning, and bouncing. Anything to jar the "faulty" norm they have established and re-establish a "better" norm that helps them interact with our context better.

Remember how Alex is non-verbal? When Alex is fully regulated (rare), he can talk in sentences. Something about his norm seems to disconnect his mouth from his brain. We don't quite understand it yet, but there are times when Alex can talk. This is the powerful connection that sensory integration disorder, and more importantly sensory regulation, has to autism and overcoming the challenge that autism presents to the individual and those around him/her.

Now, back to that last pesky section in the diagnostic criteria for autism (DSM-IV). The "apparently inflexible adherence to specific, nonfunctional routines or rituals" (emphasis mine) do actually have a function. They help autistic individuals regulate themselves so that they can interact with their surroundings, they help order a seemingly chaotic world (the autistic's perspective) into something that has enough order to interact with, and they help provide an individual struggling with "distorted" perceptions make sense of seemingly non-sensical world. If you want to deny the individual these routines and rituals because they're not "normal," then I highly suggest you have something else in place to serve the function they served -- which requires understanding the function they serve. Those "stereotyped and repetitive motor mannerisms," which I called stimming, are forms of sensory regulation, which is why it's called self-stimulation. Again, word of warning, if you would deny them this, you better replace it with something else. Many people advocate taking specific actions to "normalize" autistic individuals, without taking into account the needs those individuals are trying to meet. If you don't meet those needs, which are, in fact, needs, then you are hurting the autistic individuals, not "normalizing" them.

Now, I opened this with an anecdote, and I want to tell you a little bit more about that. One day last year I was going into my children's school for an IEP for one of my younger children, and I passed Willy in the hall. Since my presence at the school can "shake his world," I tried to be unobtrusive and pass by unnoticed. However, I saw the teacher gently guiding Willy to his next class, a pull-out class, and heard the exclamation, "Ow! You're hurting me!"

The teacher said, "No, I'm not, Willy." And I had to stop. I had to speak. It's just the way I am.

"Actually, [name withheld], you probably are." With her permission, I demonstrated on her how she was holding Willy. Her fingertips pushed gently on the muscle of Willy's shoulder, barely touching him. But, that ungrounded pressure, coming seemingly out of nowhere (to Willy) was painful, because it was out of context with what he recognized of his surroundings. I showed her a more appropriate form of touch, with her palm on that same muscle, and her fingers wrapped over his shoulder, with a lot more pressure (almost "too hard") and sent them on their way. As Willy made it to his class, he said, "That feels much better," in his typically melodramatic way.

Being sensory smart can make a world of difference when trying to align two different perceptions into one cohesive, productive exchange. And to me, that's what this is all about. It's not about getting them on our page, but getting to the point where we can both read what's on each other's pages and interact accordingly.

Coming soon (maybe before I even go to bed) will be What is Autism -- Part 5, What Autism is NOT.

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Thursday, December 28, 2006

Sorry -- Again!

I'm still not well. My throat is swelling closer and closer to shut and I have to go in to the doctor. Yesterday just slipped by. Hopefully today I'll put up a post (this one doesn't count) or two. We'll see. They say if it's strep they can help, if not probably not, but my regular doctor's booked and I have to go to Urgent Care. So, wish me luck! I'll be sure to take along a book since it'll just be me for a change.

Hopefully I'll be able to put up the post this afternoon/evening...when I can breathe!

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Tuesday, December 26, 2006

What is Autism -- Part 3

Behavioral Patterns

The third and final main area of criteria for an autism diagnosis is, according to the DSM-IV: "restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:"

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger
flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects

This has always been the most difficult of the three sections to interpret. I'm not exactly sure why, other than the tendency to separate it out seems excessive to me. But, separate it they do, so shall I.

This would be, roughly translated, what Mark and I call compulsion. In context, my cigarettes are addictive; Mark's video games are compulsive. I am addicted to the nicotine, and thus I smoke. Mark's video games are a compulsion. They are not physically addictive, but he does feel compelled to play them. The compulsion vs. addiction is the context I use to explain this particular aspect of autism.

Compulsion or obsession, as it may seem, for a particular subject matter, or a particular sub-set of a particular subject matter is a noticeable trait, but it's difficult to decipher. Many people exhibit this trait to varying degrees and why autistics are singled out for this...I don't well understand. Then again, both my husband and I exhibit autistic traits, and this may be an area that is just "normal" to us, because we've lived it our entire lives.

"(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus"

For Willy, this used to be his trains. He loved Thomas the Train. He was getting a present...he wanted a train. He watched a video...it should be Thomas. If it was books, then it was books about Thomas. He loved Thomas the Train. We had two hollow pumpkins, the cheap plastic pumpkin buckets you take trick-or-treating. They were both filled to the brim with trains. Willy first learned pretend play by re-enacting a crash from a video, and embellishing from there. Willy would play with them every day. He would set potty-training goals, with a new train as his prize. He'd sneak them off to school with him whenever he could. He'd talk about his trains, what they were doing or what he wanted to do with them, at every opportunity. And, at night, he'd take up one or two buckets of train and spread them across his bed, falling asleep right on top of them. He loved his trains.

For Alex, this obsession/compulsion is videos. VeggieTales videos are preferred, but not necessary. He loves the credits at the end of the videos. He gets really excited in anticipation of those credits, and if you turn them off before they're done...he cries and carries on over the injustice of it all. He's gotten better about that last part, but it's all very relative. The first word Alex ever spelled is v-i-d-e-o. It's still the word that he spells the most. (Yes, he's non-verbal, and yet he spells. Go figure.) The first meaningful phrase he ever spoke was "watch bye...watch bye..." He wanted to watch the credits again. And, saying it like that, he got to watch the credits again. This fixation on moving words and letters has gone on to other things. He now really likes sing-along-videos. The ones with the words scrolling on the bottom. And, with the advent of DVDs, we can now put the closed captioning on and there you go -- the perfect treat for Alex. Computers are also great for this. Alex can watch me type and have a blast at it.

Ben is a different type of child altogether. Ben, he likes stuffed animals. They're all Winnie the Pooh, even when they're not, but that doesn't seem to matter. He also likes boxes. This, I think, is my fault. When he was a baby, I lined our laundry basket with blankets and could carry Ben, sound asleep, between upstairs and downstairs to be wherever I needed to be. Of course, I held him as much as I could, but Ben liked to be in his basket and, with two needy big brothers, the basket was convenient. Now, three and a half years later, Ben still likes that same basket...though it's full of clothes as often as not. He also likes the box that is filled with stuffed animals. He likes to climb in the box and sit on the stuffed animals, playing with a few choice friends -- who are all Winnie the Pooh even though none of them are.

Is any of this what they mean? I don't really know. I've heard people talk about students with autism who will only talk about Pokeman. I've heard parents talk about children with autism who are absolutely fascinated with lights. It all plays into the same things, as I see it. Autistic individuals experience things from their own context, and those things that bridge easily for the individual take on a special place...whether it's trains, videos, stuffed animals, Pokeman, or lights...if they can get a reaction from us they're golden and the fixation holds meaning that transcends beyond the limits of a single context.

"(b) apparently inflexible adherence to specific, nonfunctional routines or rituals"

Anyone see the movie "Rainman?" This is the first thing I think of when I see these words. My kids don't have that. They don't do that. At all. Ever. Never. Nothing like it. Okay, but take it out of that context...

For the longest time I had to take my children shopping just about every time I went. For this time I went to exactly two different stores. I went to Pick N' Save. I went to Target. There was no deviation, because deviation was bad. Pick N' Save and Target were the friendliest stores for my family, because they were the least annoying/irritating atmospheres. Wal-Mart was the worst. At Wal-Mart I could not walk down the aisle without the kids being able to reach both shelves, grabbing as they went. All the other stores were either too bright, too noisy, too flashy, too bumpy, or too...something. So, we went to two different stores. And each store involved a single different path. Other than that, we went to take Daddy to work, or pick him up. There were three acceptable paths. Any deviations, and there was screaming. We went out to eat...there was screaming. We went to the park...there was screaming. The screaming usually stopped once we got there, but Alex in particular would fuss until we got there, just because he didn't know where we were going. Words didn't help. It wasn't until he saw the destination and the car actually stopped that he knew, okay, this is okay, we can go here.

So, for my kids, it's less about day to day routines, as overall patterns. There are some day to day routines, like me putting the boys to bed, that tend to be inflexible. If I'm available, I put the boys to bed. But, at least it's gotten to the point where they won't often wake me up to put them to bed. There are others, but again, less dramatic. That driving thing...it's still occasionally an issue. Though, less now because they don't have to go shopping with me any more.

"(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)"

Stimming. This is called stimming. And, I object to its presence in this portion of the diagnostic criteria, because it's in there without an explanation. Do they understand these behaviors have an explanation? Do they care? I don't know, because they don't say. These "motor mannerisms" are called, by the autistic community, stimming, short for self-stimulation. They relate to Sensory Integration Disorder and I will delve into more detail in my next post.

However, I just want to assert that all my boys stim, and all autistics I've ever interacted with stim, and this is an area where accommodation and understanding, imo, has to trump normalizing. A little blip about stimming is not enough; and this is one of the reasons I really don't think there's enough understanding of autism in the medical community.

If this sounds kind of like a childish nyah, I'm fine with that.

"(d) persistent preoccupation with parts of objects"

This to me, again, relates back to the overall lacking of shared context. How do you discern what about something is important? Without a shared answer to that question, there's no real way to determine whether the focus is preoccupation or proper occupation.

Consider this for a moment: A man in the work place, 1955, notices that the woman working the phone has a nice butt, nice breasts, and wiggles attractively when she walks. How does she do her job? Who cares! She's attractive!

Is this a preoccupation with parts of the woman or a proper occupation with the woman? In 2006, the answer is Preoccupation! However, it was a pretty common preoccupation in 1955. For many men, and even some women, thinking about women was thinking about they're parts. Luckily for women, society, for the most part, has changed by now.

However, for autistics, thinking about parts versus the whole of an object, is about what's within their context. Luckily for us, sexism is not the cause. However, it's also not so easily solved -- and for those of you who understand how NOT easy "solving" sexism was/is, no rotten fruit please. That's part of the point.

Autistics have their own context for looking at the world. This context is not shared with us, and not always shared amongst autistics either. For example, we look at people's faces -- the whole face, and with it the whole person. At least, we're supposed to. My sons' focus on parts. Be it eyes, mouths, noses...whatever. They do not focus on the whole face, let alone the whole person, all of the time. Hair, nose, mouth...those are favorites. Eyes are scary.

Is this objectification? Hardly, it's about assessing something within their context. Mouths have to do with speaking, and thus get a lot of focus. How do we make our mouths make words? Hmm. My two littlest ones have been trying to figure that out, and thus they focus on mouths. Hair is good to grab, chew on, very sensory. So, hair gets focus too. Noses, that's Willy's thing -- mostly because he likes to take them. He's moved on, though. Now he'll take your ears or your brain, too.

Looking back, I don't know whether or not I've provided any useful information. If nothing else, I've established my discomfort with the area of assessment. All of this seems to me like looking at parts of autism without understanding the whole of autism. And isn't that something that supposed to be bad? Yes, perhaps you can assess whether or not someone is autistic this way, but does it really tell you much when you don't understand the underlying causes behind these behaviors? I don't think so.

Tomorrow, I will cover What is Autism -- Part 4, Sensory Integration Disorder. Perhaps more sense will be made then.

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Sunday, December 24, 2006

Merry Christmas!

Merry Christmas to all...
...And to all a Good Night!!!

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My Apologies

I said I would post the next in my What is Autism series today, but it's not going to happen. Between waking up sick, and having to reschedule Christmas to today to better suit the time-table of my step-son's visit to our household...I'm just not up to it. I tried to collect my thoughts and failed. I tried to rev up my mental juices...and failed. I figure a delayed, but coherent post would be much better than my current ramblings have turned out to be. So, I'm sorry, but I prefer quality over timeliness.

I'll be back to post again on Tuesday. A Merry Christmas to all!

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Saturday, December 23, 2006

What is Autism -- Part 2


A diagnosis of autism does not rely on social irregularities alone. Autism is called a pervasive developmental disorder, and for a very good reason. Simply put, autism affects every aspect of an individual's life and experience set. One of the ways this is most apparent is in communication.

According to the DSM-IV (see Part 1 for link), the second set of criteria for a diagnosis of autism is "qualitative impairments in communication as manifested by at least one of the following:"

(a) delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Once again, I'm going to break this down:

"(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)"

Two of my three autistic children are primarily non-verbal. What this means is that they do not speak communicatively on a regular basis; when they do it is usually with a single word, or an indicative portion of a single word. For instance, Alex can say "Mama," however usually when he's saying "Mama" it is a reflexive action that has no apparent connection to me, his mother. However, upon rare occasion, he will be communicating with me, acknowledging my presence, my attention, my love and our mutual connection. Last night was such a time. Alex was sick yesterday and didn't recover at all that day. He felt sick when he woke up; he still felt when he went to bed. (He's fine today.) Last time when I tucked him and gave him extra snuggles, he said, "Mama" repeatedly. Usually he says this in a sort of "monotone." It's not truly a monotone, but it's a repetitive inflection and pitch that indicates he's doing some vocal stimming. This time it was not said with the same pitch and inflection, but with hugs, eye contact and vocal variety. He was acknowledging that I was his Mama, and that he felt better with me there.

Imagine for a moment what it would be like to be full of feelings and thoughts, but unable to express them verbally. For those of us who take verbalizing our thoughts and feelings for granted, it's difficult to imagine. We can imagine ourselves in a foreign country where we don't speak the language, but that still doesn't properly correlate to autism. You see, were we in a foreign country, we'd mime and gesture our way to understanding. It wouldn't be easy, and we'd get frustrated, but if the other person was patient and willing, we could communicate. With autism, this ability is often absent as well.

It's not the words themselves that are so difficult. It's often the concept of communication itself that is baffling. In my previous post I described to individuals looking at different pieces of art, and how an autistic individual would find it difficult to redirect themselves to the piece discussed by the other person. Now, imagine this was your normal situation. People are talking, making sounds that are symbolic of things, but symbolic of what? If you don't know how to make that shared connection of stimulus, how are you going to make things and words, or things and gestures, or even things and pictures connect in your mind. If you're looking at a ball and the other person is labeling a table, "Table. This is a table," and you don't notice and attune yourself to the item being labeled, you may associate the ball with the word table. With such inconsistencies being a constant in your world, then labels for items, words themselves, are not going to make much sense. It's going to be very difficult and frustrating to use words, or understand words.

Now, to explain why autistic individuals find it so difficult to use miming or gestures to compensation for their lack of a usable verbal repertoire, let's think about Charades. Anyone who's ever played the game knows that it is more difficult than simply speaking. A good game of Charades relies on several key components. First, the person miming needs to understand the subject matter. Try to imagine yourself communicating magnesium in the form of Charades. A chemist or biologist might be able to do it successfully, but most of us just don't know enough properties of magnesium to find a means to use gestures to communicate the word. For myself, I don't even know where it is on the Periodic Table of Elements without looking it up. Now, the second component is for your team members, those who are guessing the word, to have a similar understanding of the word. The third is for the gesticulator to effectively communicate this shared meaning. Without any of those key factors shared meaning, i.e. effective communication, is going to elude the team.

Since shared meaning already eludes individuals with autism, miming is out. If you don't understand what "bye-bye" is, the leaving of another individual or yourself, and you don't understand that waving indicates "bye-bye," and you don't understand that it is a socially appropriate behavior to wish a farewell with the wave of the hand, then you're not going to be able to learn the gesture in context even though you can physically wave your hand.

"(b) in individuals with adequate speech, marked impairment in ability to initiate or sustain a conversation with others"

While my oldest child with autism is verbal, he does speak and he does speak fairly well (though he didn't when he was first diagnosed), he still has a lot of difficulty holding a conversation. For Willy, it isn't a lack of words that's the problem, it's the lack of context. Again, we return to shared meaning. While he understands the meaning of a great deal of words, he doesn't understand that everyone doesn't share the context that's within his own mind. Obviously, this isn't limited to individuals with autism by any means. I'm sure we can all think of a few examples, techno-babble and colloquialisms being frequent examples of miscommunication in our culture. However, most of us can correct these problems when the problem is brought to our attention.

Willy likes YouTube. He especially likes watching episodes of a cartoon called Monster Rancher on YouTube. One of the main characters in this cartoon is Holly. Willy loves Holly. According to Willy, he's going to marry her, and she's his sister, and she shares his birthday. Holly is very much akin to an imaginary friend. However, as much as Willy talks about Holly, he never mentions she's on Monster Rancher. When Willy started talking about Holly, I assumed she was a child from his class. I assume that he'd befriended a girl from school, and that they played together. His therapists thought the same thing. This went on for weeks. Until finally, Mark (my husband) heard me and Willy talking about Holly, and told me where she's from...and then the things Willy was saying made more sense. (Not the part about her being his sister, though.) But, despite the obvious miscommunication for someone who understood the context, it never occurred to Willy to share his context with those of us who didn't know.

This is frequent in Willy's case. And that context can be very elusive in and of itself. Willy assumes we share his context, or that shared context is unnecessary, or something to that affect, when in fact there's no shared context and effective communication is not happening.

Now, to clarify something, Asperger Syndrome is a pervasive developmental disorder that is on the Autistic Spectrum, but doesn't carry the same inhibited communication that Willy used to have, and that Alex and Ben still do. They develop the ability to communicate, but much like Willy is now, understanding the social complexities and the shared context of holding a conversation often eludes them without specialized help or painful struggles to develop the abilities on their own.

"(c) stereotyped and repetitive use of language or idiosyncratic language"

This probably refers to something called echolalia. It is the use of words without the proper meaning attached to it. When Alex does his vocal stimming, he is occasionally exhibiting echolalia. However, Willy did this much more frequently. We would say something, and Willy would repeat it back to us, several times, without any apparent understanding. It also refers to generalizing words that are not generalizations. Ben, for example, calls all his stuffed animals, and even a few trains, Winnie the Pooh. He can say Winnie the Pooh. He likes Winnie the Pooh. And he says it of his dinosaur, Thomas the Train, and a myriad of other toys, stuffed or not.

"(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level"

I'm sorry, I shouldn't, but I tend to scoff at this one. There are two reasons for this: First, when Willy was diagnosed with autism his doctor told us, quite frankly, that he'd never speak or practice pretend play (i.e., make-believe play), right before he told us our son wasn't worth our efforts and that he should be institutionalized. Now Willy is telling us stories about all the adventures he's had with his imaginary cartoon sister, Holly. And, whether it's a good thing or not, I can't resist the pleasure of thumbing my nose at this doctor, though I tend to leave him unidentified.

The second reason is more difficult to explain. 1) I see it as misplaced. 2) It's difficult to assess. 3) I don't think it's altogether true. Individuals with autism who are unable to communicate effectively are "in their own world." Unless you make substantial efforts, you don't know what's going on in that world. Even if you make substantial efforts, you have to make the right efforts, and you still don't always know what's going on in their world. Who are we to say they're not playing make-believe? We don't know! Just because we can't recognize it as such, doesn't mean it's not happening. It's the whole shared context thing again. We don't share their context, but that does NOT invalidate their context.

Now, I'll step it down a notch or two and explain a little about what this means. Neurotypical children, i.e. "normal" children, play in certain, predictable, recognizable ways. Little girls and little boys play house, they play war, they make dinosaurs roar and they build bridges out of blocks and have horses cross over the tops of them. All these are examples of "spontaneous make-believe play or social imitative play."

Autistic children often don't do these activities without being taught how. Yet, they do play, even if they don't play in neurotypical ways. Alex likes looking at objects. He holds them by his face and twists them around, looking at it from a variety of angles. Is this play? The psychologists tell me, "No, it's not." For some reason I don't quite understand, it doesn't count in their opinions. However, Alex smiles, laughs, giggles and gets excited when he does this. He sees something we don't. We don't know what that is. We don't understand. But that doesn't mean we can say for sure that he's not using his imagination. We can't even say for sure that he's not imitating something we've done or do on a consistent basis. We just don't know.

While Alex's therapists and our family do work hard to teach Alex "normal" ways of play, we do NOT impede him from these activities he obviously enjoys, irregardless of our own lack of understanding. Alex loves to do this. He enjoys doing this. Who are we to take that away from him?

Now, at the beginning of this post, I said, "One of the ways this is most apparent is in communication." Autism is a pervasive disorder. It affects all areas of life. And, communication, or the lack thereof, is one of the most difficult challenges to overcome. You can want to be social. You can try to be social. However, if you cannot communicate, the barriers to socialization are virtually insurmountable. Ah, but I've got a secret...

Autistic individuals communicate regularly. They communicate in a variety of ways. They communicate through words, sounds, and vocal variety. They communicate through gestures and miming. They communicate through body language and actions. They communicate just as much, or nearly so, as the rest of us. Does it seem like I'm contradicting myself?

It shouldn't. I left the keys to these sensational (if you're typically-minded) statements throughout my post. You see, it's NOT that autistic individuals don't communicate. The autistics individuals who do communicate prove that. The thing is...autistic individuals do not communicate within our shared context!

Alex, non-verbal child that he is, communicates all the time! It's up to those who are around him to decipher his communicative messages to share his context. It's up to us to piece together the message and translate it to ourselves, and then to find a way to translate the response back into his context. It's hard work. It's frustrating. It often fails. But, it's worth it. Those precious moments of shared context are treasures of unimaginable worth and I cherish them. Some people find this to be more difficult than others, and some people, sadly, refuse to even try. However, this insistence that the autistic individual come into our world, our context to communicate basically slams the doors of communication in his/her face. Communication is a two-way street, and sometimes the more "able" people need to get over themselves enough to make the extra effort to make it happen.

What is Autism: Part 3, Behavioral Patterns, will be posted tomorrow.

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Friday, December 22, 2006

What is Autism -- Part 1

Social Interactions

According to the DSV-IV (Diagnostic and Statistical Manual edition 4) published by the American Psychiatric Association, Autistic Disorder is a disorder consisting of the manifestation of a variety of measureable traits. One of these traits is the "qualitative impairment in social interaction, as manifested by at least two of the following:"

(a) marked impairment in the use of multiple nonverbal vehaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental
(c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity.

Overwhelmed yet? I live this stuff every day, and when I first say that I went, "Huh?" But, then I was able to break it down into meaning based in examples. Lets see how this actually works.

"(a) marked impairment in the use of multiple nonverbal vehaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

Willy is the most normal of my three autistics boys. This is ironic, because he was also given the worst prognosis. Lesson #1) Prognosis is not diagnosis: diagnoses are based in scientific fact; prognoses are "educated guesses," with personal bias thrown in. Anyway, Willy talks and socializes. He communicates in a variety of ways. But...and this is a big but...we have to actively teach him about emotions. His emotions, other peoples' emotions, doesn't matter; he just doesn't get it. Not on his own, anyway.

Human beings communicate in a variety of ways. One such way is non-verbal cues, such as facial expression and body language. Many people have heard of Emotional Quotients. Being people smart can get you just as far, if not farther, than being book smart or intelligent. Most people learn these non-verbal cues as they grow up; they soak it up through observation, often without ever being aware they're doing it. They make judgements on the basis of these observations, usually unconsciously. They take it for granted, and they expect others to be skillful as well.

Autistic people are not skillful at it, at least not naturally. They have to consciously learn these same skills of observation and intuition that most people take for granted. It's hard work. It holds them back. And, it's hard for those on the outside of autism to understand why this is such a difficulty for them.

Right now we are teaching Willy about emotions using exaggerated facial expressions (read enlarged emoticons), coaching him with verbal expressions, and other tried-and-true autism therapies. It's difficult to help Willy sort out his emotions, because sometimes we simply do not know what he's feeling. Sometimes it's hard for us to tell whether he's mad or frustrated or sad. But, slowly he's learning to be able to distinguish between them. Eventually, we hope, he'll be able to recognize emotions in other people and respond to those emotions appropriately.

"(b) failure to develop peer relationships appropriate to developmental level"

Alex is seven years old. He's had many challenges, some of which are not directly related to (though they are exacerbated by) autism. Alex loves people. Alex is happy. Alex is fun. Yet, he doesn't really have any friends his own age. All of Alex's friends are people who've made the effort to be friends with him, an act he's not yet able to reciprocate. That doesn't mean he doesn't interact with them, or play with them, or anything like that. But, having a friend is different.

Generally speaking, I like people, though admittedly I don't trust them. I have friends who, given due cause, I'd go up to bat for on anything. While I care for the well-being of almost everyone on this planet, all six and a half billion of us (with the notable exception of mass murders, serial killers, rapists & child molesters), there are some people I set apart as "mine." I don't mean that in an owning or possessing sort of way, I simply mean that I associate them as an other who is directly tied to myself. My husband calls this "invisible strings." I would put it this way: I would not be who I am today without these people having touched my life and myself the way they have. These people are friends. They are set apart. They are elevated. They affect in dramatic, long-term fashion. They are friends.

Sadly, Alex does not readily make such distinctions. I am distinct. My husband is distinct. His brothers are distinct. His grandmother (my mom) is distinct. A few of his therapists and teachers are distinct. Other than that, anyone else rates just as high as everyone else. The children Alex plays with are not people, so much as props. Alex's excitement over classmates is virtually indistinguishable from his excitement over pets. His interactions...virtually the same. He's getting better at this, and we're working on it, but right now. People are all incredibly interesting, but Alex hasn't been able to break through the mold in which he views them...except for a precious few.

"(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)"

Ben is an inquisitive, joyful little boy. He's four years old, and has all the energy and curiosity that implies. He climbs, crawls, runs and plays...he finds all sorts of things to investigate. He finds all sorts of pint-sized problems to solve. And he does so with fervor. He explores his body, his surroundings and his limits. He explores other people, all sorts of things, places and just about anything he can find. He doesn't have a flashing light that goes off in his mind saying, "This is a bad idea." He simply explores, pressing against and beyond any limits that are set.

Doesn't seem particularly uncommon for a four year old, huh? There's just one little difference; one that stands out if you're familiar with childhood development. Ben does NOT share his discoveries with anyone. Why, I'm not sure, but he doesn't. He could find something he considers to be "the coolest thing in the world" and he won't share it with anyone. Not that he won't hand it over upon request (though that can be difficult too), but more that he won't draw anyone else's attention to it. There's no "Mommy, look!" from Ben. He doesn't bring me his discoveries; he doesn't hide them in his pockets; he doesn't ooh and aah over them for anyone. He simply enjoys them on his own.

Now, the clincher here is that he also doesn't readily redirect his own attention when someone else tries to share their interests/discoveries with him. I can't point to the squirrels that play on our porch and have Ben actually look. I can move his head, gently but physically, and then enjoy that moment of discovery we can share, but this is fleeting and often a complete failure. I can dangle something in front of his face until he notices, or cue and cue and cue him, but in the end the struggle to attend is paramount. Sometimes shared attention occurs, most often it doesn't.

This makes education very difficult. In order to get something to "sink in," you first have to obtain shared attention. You have to make sure the other person's focus is on the same thing yours is, or you're going to have a disjointed conversation...if you converse at all.

Imagine for a moment... You're looking at a serene picture of a waterfall. It's peaceful and inviting. The water is cascading down into a pool below, and the painting is full of colorful fauna that makes you want to step right inside. Now, from somewhere around you, "That's a circle. It's a red circle. The circle is inside a square. The square is blue. Remember circle, square, red, blue." Confusion, disorientation, and a big "Huh?" follows these seemingly inappropriate statements. Now, at this point, most people would turn to look at the speaker and find what the heck they're talking about. "Ah," you think, "they're talking about the abstract sculpture behind you!" Then, it makes sense. A person who doesn't share their interests with others does not do that, they don't obtain shared attention to make sense out of confusing, conflicting information. At least, they do not do so readily and instinctually. Thus, the world makes that much less sense to them.

"(d) lack of social or emotional reciprocity. "

Okay, this is where outside resources comes in handy. The dictionary definition of reciprocity is "A mutual or cooperative interchange of favors or privileges, especially the exchange of rights or privileges of trade between nations." (second dictionary, #2)

However, Wikipedia has this to tell us (when brought into proper context):

In social psychology, reciprocity refers to in-kind positive or negative responses of individuals towards the actions of others. Thus positively interpreted actions elicit positive responses and vice versa. Positive reciprocal actions differ from altruistic actions as they only follow from other positive actions and they differ from social gift giving in
that they are not actions taken with the hope or expectation of future positive responses.

Breaking this down, I think this is refering to the tendency for autistic individuals, as depicted my children, to react to social stimulus in unpredictable ways. Most recently, a favorite therapist gave Willy several gifts for his birthday. These gifts included a basket of apples, a package of socks, and brand new shoes -- the kind that are too expensive for us to afford for our kids -- and a heart-warming card. These were very nice gifts that, upon reflection, Willy liked very much. However, Willy was interested in 1) opening his gifts as quickly as possible, 2) going back to his video which was a new excitement for him. Appropriate reciprocal behavior would have been to take time to open them nicely, enjoy and appreciate them, and thank the giver. The appreciation and thanks didn't come until later...after the favored therapist was gone. But, again, I'm neither psychologist nor sociologist...just a lay parent who's learned a lot about autism through immersion.

It's complicated, confusing and I'm just getting started. This is only ONE aspect of autism. If you have questions, please ask. If you have comments, please leave them. If you have anecdotes of your own, please share them.

What is Autism: Part 2, Communication will be posted tomorrow.

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Thursday, December 21, 2006

What is Autism: Introduction

My dear friend, David Shantz, brought it to my attention that perhaps my readers don’t know so much about autism; perhaps that is something I should fix. When I address the issue of autism in the outside world, at school for example, I put my experiences in context. When I gave my first speech about autism, I knew I would have to explain what autism is. There’s so much about blogging that I’ve come to take for granted, there are so many relationships I’ve developed where the short-hand of a conversation works just fine, that perhaps I took it for granted that my readers would see the context of autism in my life. That was inappropriate.

However, one of the greatest difficulties when putting autism into context is that autism is complexicated. Yes, this does mean that autism is complex and complicated. However, I choose the “word” complexicated to imply something else as well. Like autism, complexicated is a word that will only be recognized and understood if you put a little effort into it. If you just shut your mind off, because complexicated isn’t a real word, then you’re shutting off a possible avenue of communication. However, if you’re open enough, you’ll recognize that it may very well be an attempt at “complicated” or it may be something else, perhaps a little more even.

It is very much the same with autism. You can cling to the notion that autism is a developmental disability, i.e. bad, or you can open yourself up to the myriad of possibilities. When putting autism into context, a person such as myself has the responsibility to acknowledge its complexicated nature. It’s not the subject matter of a single post. Therefore, I’m going to present a series of post about autism. I’m going to address autism from a variety of angles, while using many real-world, personal examples to bring it all into context.

Before anyone gets jumpy, and by this I’m referring the my neurodiversity-friendly readers, I’m going to explain autism both as a disability, and as a difference…so please don’t tune me out because I repeat what the doctors say.

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Tuesday, December 19, 2006

The Autism Acceptance Project

Recently I was reacquainting myself with a blog called The Joy of Autism, which I was frequenting when I was blogging more regularly. It's a blog about the joys of raising a child with autism, and was a stepping stone in my path to neurodiversity. While I was there, something caught my eye: a circular looking symbol with the words The Autism Acceptance Project.

Intriguing! So I clicked and there was the Autism Acceptance Project. It's a Canadian based organization, founded by the author of The Joy of Autism blog, and very much in-line with my own thinking. Though, this particular project focuses more stringently on the art of autism than I would, it's still very much something I want to encourage.

If you want to learn more about TAAP, and see some interesting art in the process, check out this video. There's a lot of encouraging information there.

Due to this video, I found this essay, Don't Mourn for Us by Jim Sinclair. Here are some very telling excerpts:

Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different
(non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.


That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share.


Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.


We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support.

For a long while I've related to connecting with an autistic child to building a bridge. You've got to build a little, they've got to build a little; you've got to cross a little, they've got to cross a little. Sometimes, you have to do most of the work. Sometimes, they're ready to help. Nobody can do it alone, but if connections are to be made it must be done. This essay, written by an autistic individual, confirms that theory, reinforces it, and gives me hope that someday more and more people will be willing to make the effort.

It is my goal, and the goal of The Autism Acceptance Project and the Autism Network International (run by Jim Sinclair), to open up our shared world for autistic individuals; not just for them, not just for us, but for all of us to share a better, more hopeful existence together.

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Politics, Energy, and the Lack Thereof

As some of you have surely noticed, I haven't been living up to the Politics part of my title lately. This is wholly intentional. It's not that I am no longer interested in politics, but I definitely need a break and not posting about politics is more productive than not posting at all. So, besides the Guard the Borders Blogbursts, which I don't have to write, I will not be posting about politics until the New Year.

It's called "saving my energy." You see, starting this New Year, I am tackling a project that I find more than a little intimidating. It was my idea, and I still think it's a good one, and hopefully I won't have to do it alone, but somebody's got to get it going. That would be me.

As many of my more frequent readers know, I'm the Secretary on the Board of Directors for a political action organization called VOID. To use GTL's term, we're a centrist organization, and are working to give voters back the power that corrupt incumbents have taken from them by urging said voters to vote against incumbents. For those of you who are new, I'm not going into the details of this stance, as I've done it many times already, please just jump to our Mission Statement.

My project is both simple and complicated. Basically, I want to create a database of sorts of voter education websites. Not only do I want to find all of them (or just the best, if I can't find "all"), but I also want to create a write-up of each I list that informs readers of both the good and bad of each site. What's their purpose, what they can help you with, and what slants they have...basically. Kind of a Who's Who of voter education sites, with a big splash of How to Make the Most of it in there too. Like I said, both simple and complicated. And, I'm in charge. Now that the moment of elation has been completely and utterly passed, I see the enormity of what I've taken on. The "due date" is early 2008 to allow time for distribution before the big, 2008 elections. And, unless I get a sufficient amount of help, I'm going to need every second of that...considering everything else I've got going on.

So, saving my energy is about right, and quite necessary. And, most of my posts will be about what I find, versus news commentary. So, that's my plan.

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Monday, December 18, 2006

Guard the Borders Blogburst

By Nancy Matthis at American Daughter

Today's Blogburst is also available as a Podcast.

The Price of Lettuce

Federal subsidies do not reduce the COST of food to the taxpayer. They increase it. Likewise, illegal immigration does not reduce the cost of food, or of any other goods and services, to the taxpayer. Illegal immigration also increases those costs.

In fact, illegal immigration increases the citizen's financial burden in exactly the same ways and using the same types of governmental mechanisms as the inefficient and ill-conceived government subsidy programs. Let's just look at the numbers. The available data points come from different years, so our results will not be specific for any single year, but will be representative of the general problem.

Note: This article responds to two comments made by liberals on earlier articles in our Illegal Immigration series.

  1. Joe Budzinski referenced our report on The Crider Case on Nova Townhall Blog. Over there, they play host to a token liberal, Stay Puft Marshmallow Man. Stay Puft took it upon himself to publish a response, We Can't Ignore Agriculture, featuring Critique of American Daughter.

    "....farmers work on very tight profit margins. They can't pay more. If they paid higher rates, the cost of producing a crop would exceed its market value.

    The only way to increase wages in these sorts of jobs would be to increase government subsidies even more (make tax payers pay for the wage increases), or let food prices shoot up (make consumers pay)

    both of these options seem untenable. In the later case, the negative economic consequences could be more severe than anything brought on by the recent influx of immigrants....

    We need this stuff, but in today's economy it isn't profitable without being propped up with tax dollars. Last year, we put over 16 billion dollars into these subsidies. "

  2. The Word-Drum took a shot at our friend Doyle, when he cross-posted our article Illegals Deadlier Than War On Terror on his weblog A Cool Change. As you can see, the fellow who left the comment cannot spell any better than he can do math.

    "As a Vegitarian American (Democrat) I resent having to pay the kind of prices for lettuce that would occur if we did something about illegals. It's Bush's fault anyway."

Both of these fellows believe in the incorrect "manna from heaven" theory of government assistance. It is an item of religious faith with liberals that we will deconstruct in the following discussion.

Update -- It is likely that the second comment was meant as a joke. The sad fact is that most liberals are so divorced from reality that it sounded like an authentic liberal response. And we are pretty certain that the first commenter really believes in his logic. As our contributor [Bad Moon Rising] likes to say, "They walk among us. And they vote."

The average expenditure for food per person in the United States in 2005 was $3,452 (source).

The average annual agricultural subsidy in the United States between 1996 and 2002 was $16 billion (source).

The population of the United States recently passed the milestone of 300 million (source).

So, if the value of the agricultural subsidy were applied to reduce the cost of food (it actually is not intended to do that and does not do that, but we'll get to that later) it would amount to a benefit of $53.34 per person.

$16 billion divided by 300 million = $53.34 per person

If the subsidy had the effect of benefiting the citizen, it would represent a savings of:

$53.34 on $3,452 or 1.55%

But wait just one minute! That $16 billion agricultural subsidy budget did not come, as liberals would have us believe, as manna from heaven. IT CAME OUT OF THAT SAME CITIZEN'S POCKET IN THE FIRST PLACE. Does that mean that he just broke even? No. Not even close.

In order to implement an agricultural subsidy program, the government had to maintain pro rata segments of

  • the Internal Revenue Service to extract the tax money from that poor hapless citizen

  • the Department of Agriculture to study the situation and distribute the funds

  • the General Accountability Office to audit everyone's books

  • the General Services Administration to provide all those agencies with buildings, utilities, and services

  • the legislative, executive, and judicial arms of government to create, administer, and judge such a program

Like a bad charity, government provides only fractional benefits in return for the resources it consumes. Our poor taxpayer will be very lucky to pay only a few hundred dollars for his apparent $53.34 benefit. So instead of saving him 1.55% on his food bill, the interference of the government likely costs him an extra three to four percent.

But that is assuming the government intended to help John Q. And that was never the intention. Agricultural subsidies have traditionally been used to pay farmers to let some of their fields lie fallow, so that overall they produce less, and prices remain high. Another use for subsidy funds has been to buy up the surplus of overproduced commodities and store it in government repositories, again so that prices remain high. These subsidies were originally introduced to buy the farm vote. Nowadays they are earmark payoffs for a few big factory farms, another form of big business.

Bottom line: John Q. the food consumer is being taxed to provide the funds that government uses to increase his costs.

The situation with illegal immigration is analogous. As it factors into the price of food, illegal immigration can be viewed as an additional agricultural subsidy administered and financed by government.

The farmer's cost of food production in the United States amounts to about 20% of the consumer's cost (source). The value of his crop land is determined by the real estate sector. The cost of equipment -- tractors, harvesters, whatever -- evokes names like Case, Caterpillar, John Deere, Massey Ferguson. A tractor is a tractor, a fixed capital cost. To make the case for the lower cost of illegal labor, one has to look at the systems in place for delivering food to the consumer, the other 80% -- including pickers, processors, packers, the employees in fast food chains, etc.

So will reducing the cost of labor in the food delivery pipeline save John Q. some percentage of his per capita annual food consumption costs?

80% of $3,452 = $2,762

Dispassionate analyses of the costs of illegal immigration are hard to find. One scholarly study was completed in 1997 by Dr. Donald Huddle, Professor Emeritus of Economics at Rice University. Based on 1996 data, he estimated the NET cost of illegal immigration to the federal budget at $24.44 billion. Extrapolated to 2006, through increases in the number of illegals and inflation, that becomes at least $70 billion this year (source).

Most of the organizations advocating for sensible immigration policy use this figure, which represents the cost to the government's budget, and note that this amounts to

$70 billion / 300 million= $233+ per capita for the US population

But wait just one minute! That $70 billion illegal alien subsidy budget did not come, as liberals would have us believe, as manna from heaven. IT CAME OUT OF THE US TAXPAYER'S POCKET. It was collected and administered and redistributed by the same inefficient charity -- the US government -- as the other agricultural subsidy. So to wind up with $70 billion in the federal budget to lavish on our law-breaking uninvited guests, our government had to extract many times that amount from us. You remember -- to pay for the IRS, the GAO, the GSA, the USDA, the three branches, and oh yes for pro rata segments of the Departments of Labor, Health and Human Services (remember our bankrupted emergency rooms), Justice (recall the illegals' disproportionately high percentage in the federal pens), etc.

Now we see that we are approaching a substantial portion of John Q.'s food budget. In fact, it has been estimated that illegal labor reduces the price of a head of lettuce about two cents. You'd have to eat a very great deal of lettuce to make this worthwhile.

Does anyone make out? Well, if you are the sort who spends a lot on maids to clean your house, gardeners to tend your lawn, perhaps a nanny and a chauffer, maybe yes. For example, if you can save $10 per hour on a maid who works for you one day a week (say $15 per hour instead of $25 per hour), you will save

$80 x 52 = $4,160 per year

And if you can shave a similar amount off the wages of a gardener who fine-tunes your boxwood and manicures your grass one day per week (say $25 per hour instead of $35 per hour), you can double your savings.

These wages are the going rates in the DC suburbs where our lawmakers have their posh dwellings. Throw in the Hispanic nanny who tends the little ones 48 hours per week while you are at work, and this becomes very attractive.

So the "Tijuana express" IS benefiting the folk who are responsible for keeping the underground railroad running. But let's be honest. This is not about the price of lettuce.

For an overview of our government's history of disastrous meddling in the agricultural economy, read Agricultural Subsidies in the HighBeam Encyclopedia here.

Previous articles in our Illegal Immigration series:

The Crider Case

Illegals Deadlier Than War On Terror

Going By The Numbers

This has been a production of the Guard the Borders Blogburst. It was started by Euphoric Reality, and serves to keep immigration issues in the forefront of our minds as we're going about our daily lives and continuing to fight the war on terror. If you are concerned with the trend of illegal immigration facing our country, join our Blogburst! Just send an email with your blog name and url to admin at guardtheborders dot com.

Void Sticker

New on the Side-bar

I just skimmed and put up a bunch of blogs that pertain to creative writing in some form. This is not yet a recommendation for them, but because I want to explore them myself. If they stick around...that means I like them. Or, perhaps, it just means I got distracted. We'll see.

Void Sticker

"Raw, naked fear."

A few months ago, I was thinking about my writing career, or lack of career, and was looking at my wall. I was thinking about what I wanted, and why I didn't work for it the way I should. Mark was standing by me.

There's a sign on my wall. It's a quote from Orson Scott Card that I pulled from "How to Write Science Fiction and Fantasy." It goes like this:

It might be true enough that the story isn't ready for publication -- but that isn't why you aren't sending it out. No, you're hanging on to this manuscript for one reason only.

Raw, naked fear.

I looked at it and said, "That's it. That's why."

Mark knew what I was talking about. He, too, has fears of success. He knew what I was going through and he knew how it haunted me. He simply said, "I know," and put his hand on my shoulder.

As much as Mark believes in me, as much as he wants me to succeed, as much as he knows that I can, he also knows that I have to believe it, and I have to be willing to do it. I, and only I, can do my work.

Nothing changed dramatically. Not all at once. But, soon, I started submitting short stories again. I started writing and re-editing my work. I went back to college. There, I acquired the urge to write a new kind of book. To study non-fiction, write it and seek to have it published. I started a fiction novel as well. I started thinking about what I did wrong with my unpublished novel, that sits waiting in a box for me to have the courage to take another look.

Every day I face that raw, naked fear. Whether the fear of failure or the fear of success is more strong depends on the moment. Somedays the fear wins, but not for long. And not today.

Void Sticker

Sunday, December 17, 2006

From Teacher to Baby

I woke up this evening (yes, I'm on nights again) and my eldest son had a revelation for me.

"Mom," he said, "I think I...maybe instead of a teacher I'm gonna be a baby."

Out of the blue, with no context. "I don't know what that means, Willy." I moved to close the door, cutting off the conversation I was too busy waking up to have. Then, slowly, I stopped myself.

Willy smiled. "I'm not gonna be a teacher any more. I'm gonna be a baby...a baby-sitter."

Ah, the light comes on. "Well, Willy. You're seven. Soon, you'll be eight. Maybe, when you're eighteen, then we'll worry about it, okay? That's ten years away, okay?"

"No, I'm just going to be a baby-sitter, Mom."

Well, I thought as I closed the door, at least he's not trying to choose between being a train and a fire truck any more.

* * *

When I was Willy's age, I wanted to be a teacher. I idolized my teacher, Mrs. Rogers, then. She gave me a white, stuffed money that made monkey noises. I was recovering from surgery, too frail to go to school, and she came to see me. She brought me homework and taught me lessons. She didn't have to, but she really, really cared about "her" kids. She came to see me several times a week while I recovered, and she gave me a stuffed monkey. I wanted to be just like her when I grew up.

When I was Brandon's age (my step-son), I wanted to be an author. We had a special day in school, where we came in the costume of what we wanted to be. Having no idea what an author would look like, I dressed up in a frilly dress, curled my hair, put a bow on my ponytail and wore my uncomfortable, i.e. dress, shoes. My teacher, Mr. Walker, was a good man, a good teacher, and he laughed (kindly so) and told me that authors generally wore jeans and a t-shirt because they worked from home. With a smile I thought about my uncomfortable shoes, and I wanted to be an author that much more when I grew up.

Two years later I was reading A Wrinkle In Time by Madeleine L'Engle. I loved that book. Not only was it something I could share with my mother (who was never a big reader, though now the Bible is a daily pastime), but it had a great story about a little girl who seemed far too much like me, except happily more dramatic. Her mother was just amazing. She was a chemist...or something, and stayed home, working in her lab upon occasion. Meg (the girl) grew up, in later stories like The Arm of the Starfish and A Swiftly Tilting Planet, to be a mother and a marine biologist. And, that was what I wanted to be. Going to exotic places, with my husband and my children, and having adventures. And then, of course, I'd write about them, because I'd still be a writer, too.

You learn, as you get older and actually step out into the world, what it means to have 24 hours in a day. As a child, 24 seems like a lot. You have time to go to school, climb rocks, deliver papers, play football, join the army, defeat the paratroopers, have dinner, and do your chores. Marine biology, child-rearing, and writing about it afterwards...sure, I could do that!

But, you grow up. You realize, in biology class, that dissecting pigs is not fun. It stinks, makes you queasy, and you split open the liver...so, obviously, you're not very good at it. You realize, in chemistry class, that maybe science isn't your thing when yours is the one project in the whole class that needs to be re-done, because it didn't get all frothy. And, when you finally graduate, after learning all the things you aren't good at, you marry, move out, have actual kids, and realize that 24 hours is not long enough to guarantee yourself a shower everyday, let alone time to write, let alone time to have adventures then write about them.

I don't speak five different languages. I've never been outside the country of my birth. And I've never touched a dolphin. However, I can still read Madeleine L'Engle and remember the dreams of youth, without regret. I can read Narnia, and read grown-up stories, and I can dream and write. And, someday, perhaps my stories will reach the mainstream and publication. Someday, I might inspire someone else to dream. And, for me, that's even better than living an adventure.

* * *

So, next time my son tells me he wants to be a teacher, a baby-sitter, or a fire truck, I'll take the time to hear his dream, to truly listen, and to help it come alive in his soul. He may never be a teacher, a baby-sitter, or a fire truck -- he'll definitely never be a fire truck -- but that's no reason not to dream. Perhaps, when he's older and on his own path, he'll look back and smile. Perhaps, he'll think of his dreams as a stepping-stone to where he is now. I can help with that. And, you know, that is truly better than living an adventure.

Void Sticker

Friday, December 15, 2006

Defending Our Common Wealth: A Plug

Part of what I'm doing in preparing for my book is studying the art of essay writing. Now, as per my own opinion, I do not write essays on my blog. On my blog I write thoughts, in free form. It's kind of like brainstorming...but in print. If I were to compare it to anything, I would compare it to speeches. Blogging, for me, is impromptu speaking. Essay writing is giving a manuscript speech. Neither is more valuable to me than the other, but they have some inherent differences -- thus the studying.

That being said, one of the essays I've recently read is Defending Our Common Wealth by Scott Russell Sanders. I'm not familiar with him, or with the New American Dream, which published his work, but I do have to say this is worth a read. I don't agree with everything in there, but the sentiment...that's what I feel is most important. Check it out!

Void Sticker


School's almost over for this term, and then I get a nice "long" break. All my work's turned in and for the first time in weeks I have a full night before me and I'm not sure what I should do. I have a list of tasks that I want to get done, both for myself and for others, but I'm dwelling. I'm dwelling on something outside of my control, as is my tendancy.

So, here it is: I'm writing a book. In order to get published, though, I don't write the book, I write the book proposal. Okay, I can do that. I have to learn how, but that's not such a big thing. But first I have to get some publication credits, and a blog doesn't count. A blog doesn't count because nobody has to believe in my work, my writing, my voice in order for me to have a blog. Having a blog and having readers are two different things...but still, the blogosphere, as many of us are aware, is not the most respected medium, so it doesn't "count."


They call what I need "clips," which means I have to get published and I need evidence that I got published. Where do you start? The word from the wise is that you start at your local newspaper. Not only have I read this in numerous books, but I also got it straight from the fingers of Cammie McGovern, a mother of a child with autism who has also been published...including in the New York Times. Impressive stuff. I like her work. I contacted her. She actually responded! So...local newspaper. Easy enough, right?


The Janesville Gazette won't even consider publishing me. It's not that they don't like my ideas. It's not that they don't like my writing. It's not that they don't like my style. They won't even take a look. Why? They have a policy: if they bend it for me, omigosh!, more Janesville residents will want to write editorials and they just can't have that.

Okay, so I'm being snide. I know this. I'm even almost sorry about it, but for a paper that advertises "It's your paper," they sure don't seem very willing to give voice to members of the community. Okay, Letter to the Editor, yes, but when the paper gets to express its views in 500 - 700 words almost every single day (and that's just on the editorial page) and everybody else (excluding syndicated artists, of course) gets a maximum of 250 words, which they are free to whittle down however they choose... You start to see my point.

I think back on the days when our country was founded, and I think about what "freedom of the press" meant to our forefathers, and I just have to cringe. This isn't the New York Times we're talking about here, just a little ol' paper that's trying a little too hard to compete with the big boys...something its never going to be able to do. Besides, even the NYT would consider my work...right before they rejected it. The New York Times publishes people who've been published elsewhere, it's just the way the biz works. I know this. Still, they'd consider me. And my hometown paper wouldn't even do that.

It's not the end of the world. There are still other possibilities open to me. And, I will make use of them. But, right now, I'm just a bit irritated. Rejection, sure, as I writer I'm used to that. But this isn't even rejection in the typical sense. When you get a rejection letter, as a writer, artist, scholar, ect., you're supposed to remind yourself that the editor isn't rejecting you, s/he's rejecting one example of your work. Nope. This guy rejected me, not because of my work -- he didn't even see my work -- but simply because I didn't fit a holier-than-thou profile. I guess I'm just too "Janesville" for the Janesville Gazette, which is kind of sad.