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English-2010 “Profile” assignment

Meet Theory, a nine year old genius that taught himself to read before the age of two, learned arithmetic long before going into school, and taught himself some basic phraseology in about half a dozen languages by the time he was seven. In contrast, he has trouble with basic communication and his social skills are a constant challenge. It seems, from an outsider’s perspective, that he is willful, misbehaved, overly energetic, and rude. From my perspective, as an insider and his father, he is a determined, stoic, and resilient child who is constantly tormented by challenges that are way beyond his control. Theory has autism, a disorder that, according to the Centers for Disease Control (CDC), afflicts approximately 1 in 110 children in the United States (CDC Web Site, 2009).

Every day greets Theory with differences that are not at all natural to the autistic mind. “Morning already?”, is a fairly common first thought for him. I presume this to be the case because of just how quickly the two words leave his mouth upon being woken up. Typically he has said it before his eyes have even opened up for the first time that morning. He says it with a light airiness to it that makes you think that he is perfectly happy to be awakened at the crack of dawn, which couldn’t be further from the truth. He isn’t a morning person at all. In fact, it seems like the switch from slumber to wakefulness falls squarely under the category of “transition,” which is probably one of the most common weaknesses found throughout the Autism Spectrum of Disorders (ASD). So, when Theory says “Morning already” in that light, carefree, airy way, it can be both comforting and disarming.

A transition is defined by the Oxford English dictionary as; “the process of changing from one state or condition to another” (AskOxford.com , 2004). For most people this is a fairly natural skill. So natural, in fact, that we don’t even notice just how many “transitions” there are that we go through in any given day, hour, minute, or even second. Getting up to go to the car, being called to the phone, having to go to the bathroom while reading, commercial breaks in our favorite tv show, one song ending and another song beginning on the radio, taking your socks off… All of these are examples of transitions that we probably wouldn’t even consider, let alone consider being something to be worried about, scared of, or intimidated by. For a person with autism, however, any one of those, or an infinite possibility of variations of those examples, are things that may - or may not - trigger a melt-down if not properly prepared for and anticipated.

Imagine, for example, brushing your teeth. First, you have to go into the bathroom. What if the light isn’t on? Do you turn it on or not? What are the repercussions of the light switch being shifted from one position to the other, and god forbid that the bathroom have 2 doors, each doorway having its own light switch. You know, the kind where there isn’t a specific “off” position on the switch, because both switches work in tandem. What if the switch is in the “up” position, instead of the “down” position that you have decided is the right position for “off”? Then you get to the sink. What if the toothbrush isn’t where you expected it to be? It may be just on the left side of the faucet instead of its usual right side, but still, in your mind that’s not where it was supposed to be. Then you get the water turned on; is the temperature what you expected for that many turns of the hot and cold knobs? Get the toothpaste out, twist off the cap and hope that nothing sticky got on it since the last time you touched it or, worse yet, hope that the something sticky that was on the cap the last time you touched it, didn’t get washed off! Great, now put some of the toothpaste on the toothbrush. Did it get applied the way you envisioned? Should you take your index finger and push some of the paste around on the brush to try to get it the way you wanted? Oh no, now there is some paste on your finger and - oops - your shirt. Should you take your shirt off now?…

Going back through that depiction of brushing one’s teeth, I counted over a dozen “transitions” that would need to be accounted for. For the neural-typical mind (that’s how they classify average developmental people like you and me), those steps all mean next to nothing. They are just the details of life and not at all worth noticing, let alone spending any energy on. For someone on the autism spectrum however, any one of those things, or about a million others that you and I may never quite grasp, has the potential to be a gigantic gulf between them and certainty.

For Theory, certainty is akin to chicken soup; just what the doctor ordered. Unlike many of us, routine is his ideal. While we tend to get bored with the same old hum-drum of the day, Theory brightens to it! To be absent a routine means an overabundance of directionless energy, typically manifesting itself by his throwing his body against the closest parent or couch. Much more catastrophically, to unexpectedly break an existing routine is almost guaranteed to make his next hour or two wrought with turmoil that often manifests itself as a “meltdown”.

For those unfamiliar with ASD, a meltdown may be something of a vague concept, but the general idea is, without getting too technical, an overload of the senses that overwhelms the sufferer. Anyone can experience this but the main difference for someone on the autism spectrum is that they lack the cognitive ability to be able to cope with the overload of stimuli, and it is often accompanied by a loss of self-awareness in regards to pain, physical limitation, and spatial relation. Another key point of understanding a meltdown is that, unlike a child’s “tantrum”, the meltdown is not a means to an end. A neuro-typical child that throws a tantrum is doing so for a specific reason and to a specific end. They want something and they aren’t getting it. Be it a toy or candy or to stay up late – whatever – if they ultimately get what they want, the tantrum will end. They are manipulating the situation to their advantage. By contrast, an ASD sufferer’s meltdown may (or may not) be for a specific reason, but it most certainly is not to a specific end. Once they have crossed the “meltdown” line, there is little that can be done about it. Try to give them what they initially wanted and it’s pretty much guaranteed that they will throw it, break it, shun it, or vehemently fight against it. The cause is no longer part of the equation for them. Satisfying the perceived cause will have no positive effect at all, in fact, it may have a much more negative one.

For Theory, an average week can have as few as one or two meltdowns or, on a particularly terrible week, as many as fifteen to twenty plus meltdowns, each one of them affecting him at the very core of his being. While he is having a meltdown, the whole world seems to stop and there seems to be nothing at all that can make things right again. From a parental perspective, there are few things worse than seeing one’s child go through one of these episodes with the knowledge that there is little-to-nothing that can be done to help him out. Often it just turns into a game of wait-calmly-by-his-side-while-this-plays-out-and-make-sure-he-doesn’t-hurt-himself, all the while internalizing the “what can I do to ease this for him” question. A question that has been central to parenting since the beginning of time.

Theory has been very responsive to a particular teaching discipline, Relationship Development Intervention (RDI). This discipline teaches a “different-but-the-same” technique (Going to the Heart of Autism, DVD) where an object, activity, phrase, whatever is primarily “the same” as what is expected, but that there is just enough of a difference to where it catches the eye of the observer. Not too much difference to where it becomes something else, but just enough to where the subject cannot be dismissed as “that same old thing”. This “different-but-the-same” technique can, on an occasional blue moon occasion, become quite the jewel.

Every once in a while, if the stars are aligned just so, and everything seems to be going my way, I can actually make a positive difference to Theory’s meltdown. Again, if the timing is just right, and the subject matter is exactly perfect, and the wind is blowing westerly, surprise – the thing that is the foe of the autistic – can be the thing that calms the storm of a meltdown. Not too much surprise, just a dash of it. Just a “different-but-the-same” amount of it. If done just right, this can equal calm. Tranquility. Peace.

Case in point. Last week, we were heading into Theory’s school and he, for no reason that I could ascertain, just started to freak out. He just stopped short, outside the building. Just quit walking. I tried to prompt him into class but nothing was working. After a couple of minutes, the situation had escalated into a meltdown of epic proportions. There we were, in front of the school doors, Theory, laying on the sidewalk, screaming at the top of his lungs, gawking students walking past us. Understanding that all of the activity of the other kids could only be exacerbating the situation, I counted to five and picked Theory up. He started kicking and screaming, trying his best to squirm out of my arms, but I managed to get him in to a vacant conference room near the school’s office.

The situation did not improve.

The only difference now was that, on top of his inarticulate screams relating to whatever originally set him off, Theory was now additionally upset by the change of scene. He desperately wanted to get back to the sidewalk just outside of the school’s front doors, and was doing all he could to facilitate a hasty exit. I saw this as going on for quite a while and had resigned myself to it when I thought to myself that I might “distract” him – a commonly failed tactic – and started digging through my coat pockets.

I luckily, luckily, found a pocket full of jolly ranchers, one of Theory’s favorite candies. Realizing that the odds of just offering him the candy having any effect were next to none, I then went about applying the “different-but-the-same” technique. I, not paying any (obvious) attention to Theory, took the little candies (same) and started lining them up like a train (different), all the while talking to myself, calmly and quietly, about what I was doing and making soft train noises and moving the candies around like a train on a track. Who would have guessed, but within a couple of minutes, we were both playing train with the candies and “delivering” bites to one another with smiles on our faces!

Bibliography

Centers for Disease Control, comp. ASD Data & Statistics Official CDC Web Site, December 18, 2009 http://www.cdc.gov/ncbddd/autism/data.html

Oxford English dictionary, comp. AskOxford: transition AskOxford.com April 18, 2004 http://www.askoxford.com/concise_oed/transition

RDI: Going to the Heart of Autism, Writ Gutstein, Dr. Steven, DVD 2004