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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.


At 12/26/2006 1:16 PM, Blogger mcewen said...

The 'obsessions' do drive my nutty, but at the same time they provide a motivator - get dressed and you can 'do x' for ten minutes.
I find I go even nuttier during the lull, when they drop an obsession and are in limbo until the next one appears.
As for the underlying causes? Sometimes we think we identify them [guess] but other times, we just don't have a clue.

At 12/26/2006 1:58 PM, Blogger Stephanie said...

I certainly don't fully understand the underlying causes for these obsessions, but I also find it difficult to accept that the psychologists use it for a diagnostic criteria without looking at said causes. IMO, there's much more to autism that isn't understood, or even acknowledge that hold pieces to the puzzle of what we're dealing with and these pieces seem to be ignored by those we're supposed to trust with the welfare of our children.

At 12/26/2006 9:15 PM, Blogger David Schantz said...

"there's much more to autism that isn't understood,". Once again I want to thank you for helping others understand.

God Bless America, God Save The Republic


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