The Illusion of Nonverbal Language: My Autism Story

by Nick Yielding


CONTENTS

Introduction and Foreword
My Story
Verbal vs. Nonverbal
The Social Puzzle
A Little on Depression
Over-compliance and Non-compliance
Stimming/Fixations
Meltdowns/Tantrums/Panic Attacks
Phobias, Fears, and Obsessions
All Things Sensory
Autism Myths Under the Microscope

INTRODUCTION AND FOREWORD: WHO AM I?

My name is Nick. I have mild autism and have spent quite a bit of time learning to analyze what makes me tick (no pun intended) differently from other people. Many of the things I have to say are based on my own experiences or observations and may not apply to all autistic people. However, there are many things about this condition that seem to be universal albeit expressed differently from person to person. Those universal similarities and quirks are the things that I want all the “neurologically typical (NT)” people to understand.

For anyone reading this composition as a means of better understanding a child, relative, or friend with autism, keep in mind that since no two autistic people are alike, these things should not be stereotyped onto any given autistic person. This is not intended to be an instruction manual. For those readers these ideas can, and should only, be taken with a "grain of salt," figuratively speaking, so that it may be possible for a caregiver, friend, parent, etc. to evaluate how closely their particular person in question measures up to the interpretations I present. Only when a potential caregiver knows which ideas apply, how they apply, and which do not apply to their particular child, relative, or friend can this composition be used effectively as a better means of understanding, communicating with, or treating a person with this condition.

Remember as you read this that I am not a doctor or a psychologist and I cannot guarantee that any of this information will apply to the person you have in mind. I simply have what amounts to an inside look at a condition that many people find to be mysterious. Thus the best I can do is give you a synopsis of what I experience, how it happens, what things I have identified as triggers, and how I cope. I will also include suggestions on what things would help me personally concerning each particular quirk or problem, in the hopes that it will help someone else. It is solely the discretion of the reader to decide how the information can and should be used.

Chapter 1

THIS IS MY STORY -- WELL, THE IMPORTANT PARTS ANYWAY....

I was born January 27, 1979 on my dad’s birthday in Jacksonville, Arkansas, which is a suburb of Little Rock. As far as I know I had a normal gestation, birth, and infancy.

According to my mom I didn't suffer from a lack of speech. I was what they call "echolalic" and apparently I was doing it from about age 10 months. Echolalia is the tendency or compulsion to repeat back exactly what is heard, regardless of whether the words are comprehended. I would repeat things that I heard adults say, like a tape recorder, even before I learned to walk. My mom said that she and my dad would sit outside my room and listen to me practice words while I was lying in my crib, less than a year old. They said I creeped them out sometimes.

Everyone always said I talked like an adult even as a small child, although most of my dialogue was the echolalia, and not true conversation. My mom read to me a lot, and I learned to memorize the books she read. By age 2 I could recite some of my books by looking at the pictures and remembering the words that went with them. I could also recite poetry that had been read to me. I knew my colors at age 2; I don't know why. I also saw a pediatric neurologist regularly when I was 2, and would entertain the doctors and nurses by being able to repeat the phrase "pediatric neurologist" and various other big words on command.

My mom suspected I was autistic by the time I was 3 because although I could talk like a doctor I could not use my vocabulary to communicate with people. I seemed not to notice my mom, dad, and other people unless they spoke to me, and rather than answer their question, I would proceed into a spill about what I was building or what I had seen the last time I was out of the house. I would also panic and become frantic when I had to suddenly leave what I was doing or if someone messed with what I was building. I soon learned that I was not allowed to throw fits, but I was powerless to stop the overwhelming panic attacks from happening, so I learned how to tell time, and learned to time my activities so that I could anticipate things like supper, bedtime, naptime, etc. so that I was able to better anticipate stopping points. Once my mom realized I could tell time, she gave me a digital watch to wear and also a digital clock to put in the living room, and if we were going to go somewhere, she would tell me what time she was planning on going. She also got good about warning me in advance when mealtime, bath time, bedtime, and other such interruptions would occur. As long as I could anticipate when I had to stop building, drawing, or whatever, I didn't panic. I also learned how to use the time, hour, and minute buttons to set the clock, so that I could move it to my bedroom if I wanted to.

Before kindergarten I used to build models of buildings, streets, power poles, and sometimes entire city blocks. I used to ask to be driven around the particular objects that I was building so that I could do my best to build them to scale. I was often very unfriendly to anyone who attempted to move my things or unexpectedly interrupted my building. I was fascinated by power lines, road signs, satellite dishes, and the roads themselves and I would obsess over these things frequently.

When I started kindergarten I learned the final piece to the reading puzzle: the consonant sounds. I had already noticed by watching my mom read to me (after she had pointed to the text a few times I started to realize that she was cueing off of it rather than the pictures) that certain clusters of letters made certain sounds. These would be the vowel clusters, and once I learned the consonants, I simply put the pieces together like a puzzle. My kindergarten teachers fussed at my mom for teaching me to read. But as it turned out my mom didn't know I could read either -- until I sat there in the office and read a kindergarten book to them. My obsessions moved from roads and power lines to calendars, numbers, and maps. I also developed an interest in animals and spent a great deal of time capturing and reading about various creatures.

By age 10 I was reading on a college level (and probably speaking that way too). Problem was that I still couldn't get the hang of interacting with the other kids. It wasn't so bad in K through 3rd, because kids aren't too judgmental then. All I had to do was talk, and they pretty much listened. Catching small animals on the playground and giving mini science lessons to the spectators was cool for a while. But I had big time problems beginning in 4th grade, because my social skills never developed, whereas the other kids became interested more in fitting in with one another, rather than the actual world around them. I quickly became isolated, and I knew that something about my behavior did not mesh with the other kids. I just didn't understand what it was. I had to go through a lot of counseling between ages 9 and 15. My mom continued to suspect autism but the doctors laughed her off because my IQ was ridiculously high. Really I think it was too high to do me any good at all sometimes. My aforementioned interests continued, and expanded to include the solar system, bodies of water, and music.

My teachers had mixed feelings about me as well. Some thought I was gifted because I could recite the textbooks to them, and add missing pieces along the way. Others thought I was slow because I withdrew and had trouble with verbal instructions. I'm still the only kid I know of who was in both the gifted and talented program and the resource program. But as my peers began to take less interest in the world around them, and more interest in each other, I grew more and more distant. By 6th grade I had begun to shut down and my grades went from A's to C's.

Through junior high I tried to remain transparent, but I studied other kids, seeing how they interacted. In fact I avoided a lot of bullying by being as invisible and inaccessible to the other kids as possible. I spent as little time in the halls as possible. I hung around teachers because I could talk to them about my interests more so than I could my peers. Obviously hanging around the teachers prevented a lot of bullying as well. My interest in music allowed me an outlet beginning in 7th grade -- I joined the school band and learned to play trombone and euphonium.

I had a few friends my age, many of whom were in band, but I talked to them only for brief periods. My content would generally be limited to what they wanted to talk about, because 1) I was used to being teased for my own interests by this point, and 2) I was curious as to what things wouldn't get teased. By listening to what the others were talking about, I began to learn how to script.

In 10th grade I was still eccentric and I still had panic attacks, but by eavesdropping and studying how other people interacted, both in real life and in movies, I sort of developed a style of dealing with peers so that I could at least make it for a little while. I also learned to play basketball and touch football (my interest in numbers compelled me to become competitive in games that involved them), and luckily for me I was a fast runner. I was too small to make the varsity teams, of course, but I played a lot in yards and driveways. Thus I could express myself through my abilities and it put less pressure on me to talk. This outlet also allowed me to get in closer to the social infrastructure and study it further.

So I got to be a little less of a loner, but I still had to get away from people once in a while. Rather than looking weird, I just appeared to be a fairly smart, fairly quiet guy who was nice but just didn't have much to say. And that's pretty much how I've remained into adulthood.

I graduated high school May 16, 1997. Academically I was #70 out of 349 seniors (80th percentile). I accepted a scholarship to Arkansas State University in Jonesboro, Arkansas, which is where I would spend the next 7 years of my life.

I played the euphonium through most of college, and began playing bass guitar after the bassist from an on campus praise and worship band began allowing me to explore the instrument. I picked up on it quickly, and the following year that bassist switched to guitar, and I joined the band, replacing him as bassist. I have now played bass for several local bands and continue to pursue the hobby.

I graduated Arkansas State University December 19, 2003 with a Bachelor of Science degree in the field of biology.

I was finally diagnosed autistic at age 26 because I was having trouble at my job, mostly dealing with the whims and politics of coworkers and supervisors. I had taken a job working with developmentally disabled children because I felt compelled to help in this capacity. I also felt that I would be better understood by my supervisors since they were trained to deal with conditions like autism. Seeing as how my case is mild in comparison to most, and seeing as how I enjoyed working with children, it stood to reason that I could adapt and conform. Unfortunately, however, that outlook did not last. I still exhibited remnants of some of the problems that many of the preschoolers were exhibiting, and rather than work with me to help me get into a routine, the management routinely changed the rules and classroom arrangements, often with little or no advance notice. Changes in policy, as well as the arrangement of teachers and students, were made on a knee-jerk reaction type of basis, and I began to lose track of what was done, when it was done, and how it was done. When I began having noticeable problems coping with the loosely bound regulations, my coworkers became frustrated with me and I was deemed incapable of being responsible for the children. Interpersonal problems and sensory issues that I had not encountered since childhood began to resurface, and nothing about my issues fit any profile other than the one my mom had suspected from the beginning, which was autism. So I was re-evaluated. My mom filled in the pieces from my childhood, and the doctor quickly agreed that I fit the Asperger's/high functioning autism profile. This did not help my case at work, though, as my supervisors became fed up with complaints by my coworkers. Thus I would eventually be forced to leave the preschool.

I've spent most of the time since my realization and subsequent diagnosis trying to analyze my condition and cope with it more effectively based on what I am able to learn. My IQ is still near the 99th percentile according to the last test I took, but emotionally speaking I will probably never make it past age 10 or so.

So that about brings us up to date.

Chapter 2

VERBAL vs. NONVERBAL: I’M NOT SPEAKING TO YOU... OR AM I??

This will be a short chapter because I was very verbal as a child, so my experiences will probably not hit home with the multitude of people whose experience with autism involves speech delays. I do believe, however, that the way the world is perceived by those with autism is almost universal, despite the highly variable degree of vocabulary. Thus, I think that the ideas expressed in later chapters may be applicable to individuals with speech delays as well as those with exceptional verbal skills.

As for me, I guess the first thing I'd have to say is that my speech took off even before I was walking. My mom and dad say I was uttering phrases (mostly echolalic) when I was still lying on my back in my crib, less than a year old.

Talking was never a problem. The problem was making sense of my vocabulary, and coping with what I was able to comprehend. The hardest thing for me, I think, was understanding how the words fit into everyday talking. I remember when I overheard something, I could repeat it, but for a long time I didn't quite understand how it was used. I was very visually oriented and had to be able to "see" a word or phrase in my mind in order to understand it. I used things like picture books, encyclopedias, and other visual tools to put pictures with the words and phrases I knew. I was very determined since it frustrated me to no end when my parents, or anyone else for that matter, would misunderstand me. Thus I did a fairly good job after some practice.

That being said, an extraordinary vocabulary before the age of 2 is not generally known as one of the field characteristics of autism. In fact it's quite the opposite. One of the red flags that parents are told to look for is actually a delay in speech. What I found among autistic children, however, is a wide variance in when talking begins, and to what extent. Since I was one of the ones whose vocabulary took off way early, it's hard for me to get inside the mind of a child who exhibits delays in speech. I do know, however, that for me every word needs a mental picture attached. I think it is also necessary that the child be fully aware of the people around him in order to pick up new words. Otherwise, he may simply cope with and manage the objects around him, not perceiving the need to communicate their existence to anyone else. Autistic people tend to cue off of the physical environment more so than off of other people (due to the inherent lack of social skills), so the time at which speech begins will likely depend on 1) how engrossed the child is in his physical environment and 2) the types of effort made by those around him to make their presence and communication methods known.

SO WHAT CAN BE DONE?

If you know a child on the spectrum, talk to him. A lot. And not baby talk. Talk to him like you would talk to anyone else, regardless of his age. Explain what you're doing, why you're doing it, and how you're doing it. You may begin to feel as though you're giving a tutorial every time you do something in front of him. You'll know when he's had enough, and when he reaches his limit you can let him be for a while. But I learned to talk and use vocabulary because I studied other people, and other people made constant efforts to communicate with me. I learned that other people, as well as their words, factored into my environment, and once I learned that I needed to acknowledge this, I began to make efforts to learn how. The problem is that it can be a slow process, especially for lower functioning kids. They may be so engrossed in their own "world" that they may not take notice of other people until someone suddenly imposes a task upon them, which often frightens them into meltdown. They have to be coaxed out of their self-contained environments tentatively and in a sensitive manner, so as not to overload them, and the degree of sensitivity will vary from child to child. I will elaborate more on overload in the following chapters.

Chapter 3

THE SOCIAL PUZZLE

One of the signature characteristics of autism is that of social delay. As mentioned before I took a long time – as in nearly 25 years – to iron out the whole social thing. In fact, I am still learning. Unfortunately, I hear of many autistic adults dealing with depression because of their lack of socialization, myself included. I’ve also talked to people who have turned to drugs in order to escape from their problems. Fortunately I have managed to remain drug free, but only out of fear. I doubt I would pass up the opportunity to escape if it weren’t for all the horror stories I’ve heard. Plus, now that I’ve studied science, I can see that the horror stories have merit, so therefore my repulsion from these substances is increased.

The main thing that has kept me off of mind-altering substances, though, is fear of the unknown. I remain stable by staying in control of my "world," which means being alert enough to stimuli that I can go into my "mental database" and pick the appropriate script fast enough to avoid looking dumb, getting injured, being in the wrong place at the wrong time, offending the people I'm with, etc., etc.. Street drugs would take that alertness away from me and I would no longer be in control of my world, and thus no longer in control of my actions. The less in touch I am with my environment (due to prolonged stress/overload, some medications, or whatever), the more prominent my autistic tendencies become. I experience a lot of stress when I do something "wrong," especially when I did not intend to do it. So it stands to reason that if I were on any kind of mind-altering drug, I would be even more out of touch, which means I would inadvertently do more wrong things, which means I would have even more guilt and anxiety around other people. Aside from that it could put me in trouble with the law, and since law enforcement procedures go on without allowing the suspect to know what's happening, it would add a perpetual "unknown" environmental condition that I would continuously stress over in addition to everything else. So looking at it from that angle it seems to me like turning to drugs will only magnify my current problem many times over.

I think my main crutch is that I have mainly "acquaintances," not "friends." In other words, I have certain protective barriers ("firewalls" if you will) about me that most people just can't get through. I never stay in social situations for very long, and I only go out often enough that people will see that I am willing to go out. All I really have to do is focus on not doing anything offensive, and then if I don't make much conversation the people around me seem to absorb the "blame" somewhat for not getting to know me in the brief time that they saw me. I have the ability to "mimic" the people around me and quickly learn to do enough to not appear the odd man out, provided I only make brief appearances. I usually do this by mimicking behaviors that I observe from members of the group. I just use my mental store of scripts to anticipate certain moments, then inject the scripted response when the opportune moment arrives. It's not always easy to do, but I only have to do that successfully a couple of times in order to appear "normal" to them, albeit quiet and reserved. Thus I am simply camouflaged or disguised from a social standpoint, rather than actually a genuine member of the clique. As long as I leave with a reputation something to the effect of "that one guy Nick, I didn't get to talk to him much, and he didn't stay long, but he seemed cool...." it puts the responsibility of being social on the other people, rather than me, because it makes them curious about me and interested in me. All I have to do then is not let them get quite close enough to see me up close, and I can hang with a group for a while.

Eventually, however, my quirks and oddities will begin to show up, people will stop greeting me, and the responsibility of being social will start to shift back to me. Once this happens I begin to withdraw, and at a certain point I will feel out of place enough that I will detach from that group of friends, be reclusive and collect my thoughts for a short period of time, and then when I feel ready or the opportunity presents itself, find another group to latch onto so that I can once again have a social "luster" about me. This cycle repeats about every 12-18 months. It sort of makes me a camouflaged social "parasite," but it's the best I can do.

WHY IS THIS SYSTEM NECESSARY? OR IS IT?

It would be unfair of me to assume that the system I have described is necessary for anyone with my condition. However, the sacrifices that I have to make by using it are not as stressful to me as the anxiety that comes with messing up. I am not able to move past any kind of social "unknown" unless the person I encounter it in front of can be addressed in a way that brings closure to the issue. That closure usually involves some sort of conversation about what the person thinks of the "unknown" incident that has me hung up, so that I can enter it in my mental database and use it for further reference. When I use the word "unknown" here, what I am actually referring to is a social situation that I do not have a script for. When the situation is over, I am unsure of whether or not I handled it in an acceptable manner, and I cannot stop my mind from racing until I have found the answer. It becomes a mini-obsession for me and I can find it difficult to function until I can find a way to resolve the question. Because it can be difficult to resolve these types of questions without directly coming out and asking someone (generally considered a no-no), it can take a lot of time for me to manipulate conversations until I get the input that I need. This stress can be overwhelming to me, especially if the incident involves someone I happen to care a lot about. Thus, the most effective method I can come up with to minimize these episodes is to limit how dependent I am on social groups as well as keep my number of loved ones to a minimum. It's ironic that as badly as I want acceptance, I usually cannot accept acceptance because I cannot read the unwritten messages that other people convey, and thus I often cannot confirm acceptance to myself, even when it is present.

I think the main problem with autism in general, concerning this issue, is that we (I'm going to say "we" instead of "I" because I have found this to be true with several other autistics, but these are my own experiences here) do not understand, or at best have difficulty understanding, the way people interact with us. There is a popular stereotype that goes something like "they stay in their own little bubble and don't respond to the world around them." While it may be true that we appear to be in our own bubble, we certainly do respond to the environment around us. What we're missing is the ability to respond to the people around us. We are more than willing to love anyone who will devote their time to us. The problem is that the way people interact with one another does not make sense to us. We don't get it at all. But we want to be loved and understood, so it is very frustrating to say the wrong thing or do the wrong thing because it turns people away. And often, because inappropriate actions or words tend to come at the onset of a panic attack or meltdown (which is a very scary and stressful occurrence), it usually turns them away right when we need them the most. Thus, I personally do not have many close friends simply because I do not want to count on them for emotional support only have them leave me hanging because of something I accidentally caused. It's not that I don't want to be close to other people, it's just that it's obvious to me that it takes a certain kind of person to read what's going on with me, and it's not worth what I go through when I offend someone who can't. So I appear not to care, and I appear not to like being close to people, and I appear not to like being touched, hugged, and all that. Truth is that I do actually want all of those things, but it seems people can only get those things by correctly playing the social game, and since I am more or less inept in that department, I simply can't get involved without eventually looking inappropriate or strange to at least a few people – usually more.

It wouldn't be so important to stay on the defensive if it weren't for the fact that people talk behind backs. And what they say about a person when he is not around will often affect the way they treat him afterward. When this treatment changes, NT people seem to be able to discern the reason simply by reading others. I figured that out as soon as I began to branch out on my own, and I've been very quick to become reserved ever since. Problem is, I cannot read other people to discern the problem; I have to see it in black and white, which is not only a rare occurrence, but when it does happen, it usually does so with devastating consequences. That's because the "black-and-white" revelation usually comes as a culmination of me not getting the message over what is usually a long series of missed hints. In this case it is important to note that among NTs, missed hints often fuel the figurative fire. That means that when I do finally get the message, it usually comes with a bombardment of attached messages and/or consequences that I never would have anticipated. So once I sense that something is wrong, I will shut down because as long as I can tell that I'm missing hints, all really I know is that I have no idea what will ultimately spew out when the issue finally does come to a head. And the last thing I want to do is make things worse than they are already perceived to be.

The bottom line is that if I am not aware of the factor that has caused others to change the way they treat me, I can't evaluate where I stand with them and so I am unable to open up. This is because I can quickly sense when the boundaries have suddenly changed (or become clearly defined) but I am often unable to discreetly become aware of where these boundaries are and why they have suddenly changed or solidified. Out of fear of unwittingly crossing these boundaries (or straying even farther outside of an unseen boundary that I have already crossed), I find myself afraid to move at all, and so I appear very closed off and reserved. I can and will come out of my shell if I feel safe (ask anyone who knows me well), but at the slightest sign of mistrust I withdraw, and won't open up again until the perceived "threat" is gone. And if I can't clearly communicate or discern what the perceived threat is without causing a scene, then I stay withdrawn until either A) someone gains my trust back or B) I am frightened away or forced away from the group.

Scenario B tends to happen more often than scenario A, because people assume that when I am withdrawn it is because of a personal grudge of some sort (i.e. an extension of whatever incident set them off to begin with). So rather than get attached to people or depend on people (to do things they don't realize I expect them to do) and consequently have my hopes crushed over and over, it seems better for everyone if I simply keep as many things as possible under my own control, and unfortunately that means not letting too many other people factor into my life.

As a side note to that, if I don't let anyone get too close, it has the added effect of not allowing me to get emotionally attached to anyone (I can easily become emotionally attached if I am not careful because of my need for acceptance). That means that by keeping my barriers firm, I make it easier to detach from people when the time comes.

I have a few people who know that I am autistic, and whom I feel comfortable enough to welcome myself around. These certain people are my social and emotional lifeline when my contact with the rest of the world breaks down. They are aware of my quirks, know how to read my shut down process, and quickly show forgiveness and support if and when there is a meltdown or social blunder. And it is usually through them in one way or another that I periodically find new avenues into the rest of the NT world.

It should also be noted that there are those who have learned of my condition either through me or someone who knows me, and they did not use the information to help my relationship with them. These individuals were not aware enough of autism, or too inexperienced with it, to use the information to their good, and thus used it to judge me or make assumptions about me, thereby destroying whatever relationship we had. Because of this risk, I now require a lot of trust in someone on several levels before I will open this part of my life up to them.

As a result of having to deal with unexpected consequences on a fairly regular basis, I now make a concerted effort to be prepared for failure and loss at all times. To help accomplish this, I have put a number of pre-meditated measures in place to cushion myself emotionally when it happens. The only times I really go off the deep end is when I have several falls in quick succession, in which case I exhaust my emotional reserves before I am able to extinguish all of the problems that incur themselves. In these cases if it were not for my core of "close" friends, not to mention my Christian faith, I would be a very real danger to myself. There have been a few times when I have doubted that even those two safety nets would be enough to save me.

With all that having been said, there are some social skills that many autistic people simply cannot learn. It's just not wired into us. I can't tell you how many times I have been able to logically dissect the way I should approach a particular interaction with another person, what I should say, how I should say it, and how I should hold my posture, and be totally ready mentally, only to panic and shut down when the conversation takes a turn that I hadn't foreseen or my words were misconstrued. It's extremely discouraging to know exactly what you need to do and still not be able to do it.

SO WHAT CAN BE DONE?

Simply put, be clear about expectations. Be sure that the rules are not only clearly understood, but clarify why they are in place as well. Try to take the guesswork out of correcting things that look bad in the public's eye, or irritate other people. Even things that cannot be improved on can sometimes be curbed to a degree in public. The thing is, it's terrifying to be in a situation in which you know you are not acting right, but you don't know the correct way to act. Anything that can be done to alleviate this uncertainty will be welcome to someone who cannot garner the information from mere intuition.

Aside from that, each individual person who exhibits social delays will have to find the method that works best for him, whether that means never socializing at all or socializing to some personal limit. Just remember that social rules that are common sense to the NT are often completely invisible to the individual with autism, so if you really want to help, you would do well to fill in as many pieces to the puzzle as you can. Try to find real-life examples that can be watched and observed. Believe it or not, I learned a lot by watching movies and TV shows, then asking questions about why a character acted in a certain way. If I got an answer that made sense to me, I would look for a real life example to observe, compare it with the input I got from the TV example, and enter it into my mental database to be tried out, used, and perfected.

In any event, social rules will be learned at a gradual pace, and patience will be of the utmost importance. It will vary greatly from person to person which rules can be learned, how long it will take to learn them, and to what degree they can be learned. As long as the caring party does not show too much outward frustration, the autistic individual is likely to remain inclined to try.

Chapter 4

A LITTLE ON DEPRESSION – HOLD THE VALIUM, PLEASE

I have battled depression on and off since I was about 10. It comes and goes, but it can be very severe at times. I've found that the more I feel "accepted" the less severe my depression bouts are, but they can and do occur to some extent even when I am in a good environment. During severe bouts I can be extremely withdrawn and difficult to reach. I feel a very intense lack of self worth, and have trouble comprehending that anyone is willing to have me around. Consequently, I have been known to feel like no one would miss me if I were no longer present -- a concept that frightens me on regular basis.

Medications have never helped me with this. It's almost entirely environmental.

SO WHAT CAN BE DONE?

First of all, I am no expert on this subject, nor do I pretend to be. However, I can tell you this much: depression, if it is going to show up, usually begins to do so in the preteen to adolescent years, when identity and self worth begin to become major players. It can be serious and even become life threatening in some cases (I have pre-meditated and come up with a plan for my own death on at least a dozen occasions since the age of 20). Therefore, I would have to say that it is highly adviseable that professional help is reached if you suspect depression. Just remember that any help would need to come from a well-trusted source, otherwise this would only intensify the problem by adding more unknowns.

Aside from that, I think that constant praise and support does wonders. Remember that autistic people want to be accepted and tend to fear rejection, so reassurance is key to erasing some of the feelings of inferiority that come with not being able to keep up. I tend to repeatedly forget that I am accepted, even around friends, and I need to be constantly reminded or else I will unconsciously convince myself I am no longer wanted and become withdrawn, especially when I have made a mistake. So I think that as someone who is seeing this develop from the outside, it's important that you remember to remind your child, friend, or relative on a regular basis that you accept him and that he has your support. And also let him know every time he does a job well and try not to focus too much on his mistakes. Of course mistakes should be corrected, but it is better to focus on what can be done next time, rather than what should have been done the last time. If you use the latter too often, any analytical person (a common trait among autism) with a fair degree of intelligence will become stricken with remorse and will slack off in performance out of fear of messing up again. I have always found that I function a lot better when people are focusing on what I'm doing right, or what I have the possibility to do, rather than what I'm doing wrong. If a lot of emphasis gets put on my mistakes, even in a joking manner, I tend to shut down and things go from bad to worse because I feel like I can't redeem myself. That feeds the monster known as depression, and once it begins it is a self-feeding cycle.

Chapter 5

OVER-COMPLIANCE AND NON-COMPLIANCE – IT’S NOT WHAT IT LOOKS LIKE...

OVER-COMPLIANCE

Over-compliance, as the word would suggest, is the tendency to do exactly as told, even when it becomes necessary to adjust to changing circumstances. It comes from not having the schematics for abstract thinking, so in a bid to do the right thing, one always follows orders literally when sometimes he needs to interpret further, implied orders.

I remember a childhood example of this...

When I was in first grade I was with my dad on the way home from school one afternoon, and he went into a parts store for something. He only expected to be gone "5 minutes" so he told me to stay in the truck. As it turned out, 5 minutes would turn into 45, and as the minutes progressed, I becaame increasingly upset. I knew exactly where he would be, but I was afraid to get out because he told me to stay and I knew it would scare him if he happened to come back and I was not there. So I stayed even though I was (A) really hot and (B) really frantic because he said 5 minutes and it had been much longer than that by my ever-important watch. When he got back I was sweating and in tears and he tried to explain that I could have gone in to where he was. He seemed unable to understand why I hadn't put 2 and 2 together.

In this case I did exactly as I was told, even though it should have been clear that I should have gone in when I started getting hot. While I knew that something was essentially wrong with the original plan, I was not able to make a decision on what new action to take because I was not able to envision doing something other than what I was told and it actually be the right thing to do.

I have always made an effort to be very compliant when possible because I am perpetually afraid that people will give up on me and rid themselves of me if they can't get along with me.

As for now, I still have some tendency to forget previous commands and suggestions when given a new one because I have such a high priority for being compliant and easygoing. But since I now have a much greater knowledge that the things people say are largely objective, I sometimes drive myself crazy with "what if" scenarios because I have to take into consideration the context in which they said whatever it was and try to choose correctly from all the subsequent possibilities of what it could mean. Trying to please people this way seems almost necessary, but the older I get, the more impossible it appears. It’s kind of a catch 22. The alternative is to just try and live for myself, which I have tried to some degree during my early adult years. It does take a lot of the stress off, but I can't help but fear alienating important people in the process.

SO WHAT CAN BE DONE?

Because many autistic children (and adults, for that matter) tend to think in a concrete manner, it's probably best not to expect them to read things into what you are saying. In my case, the more information you can give me about the task at hand, the more I will be able to think on my own if things do not go as planned.

For example, let's say you are cooking spaghetti, and you ask your 12-year-old autistic child, who functions very well and seems capable, to stir the pot of noodles while the water is heating up. You then leave the room because it takes the water a little while to boil, telling him to stir until you get back. You lose track of time and forget that you left a pot of water on the stove. Meanwhile, your child is stirring and the pot begins to boil and then boil over. The natural reaction, you would think, would be to reach over and turn the burner off. But the over-compliant child will only remember your last command, which was "stir the pot until I get back." Even though he may recognize that the water is boiling over and making a mess, he does not know what to do. He knows something should probably be done, but he does not want to make things worse, so he will continue doing the only thing he knows you wanted, which is to stir the pot. He may yell to get your attention, or he may not. Suddenly, you realize you have a pot on the stove. You return to find your 12-year-old mindlessly stirring a pot which is boiling over and splashing water all over the stove. Frantically, you run over and turn the burner off and yell, "Can't you see that it's boiling over?? Why didn't you turn the burner off??"

Well, whether the child is able to say so or not, the simple, if obvious, answer is that not only did you neglect to tell him that the stove needed to be turned off, you also did not show him which burner knob controlled the burner that the pot is sitting on. Is he capable of doing it? Of course he is, but he was not given the instructions properly. You were in a hurry and simply assumed that it would be obvious what to do. The thing is, people take abstract thought for granted. Most people are capable of reading things in to what is said, as such is the way of NT language. So when they come across someone who reads nothing into what is said, and takes everything more or less face value, they are caught off guard and can't believe what they see. Sadly, mishaps like this often rob autistic people of things they are capable of. People tend to simply assume that these individuals won't get it when all they need is a good example of how things work before they are left to their own devices.

Bottom line, when giving your beloved a job to do, always remember to be specific and cover all of the bases unless there is little room for error. You'll be surprised at what your little guy (or girl) can do provided the proper information is disclosed. The only risk you take here is that if you explain something to him that he already knows, he is likely to get visibly insulted. However, I would recommend that you go ahead, be safe, and take this risk -- and just be ready to shrug off an impatient "I already know that!!" It would sure beat the hell out of burning the house down, right? All speculation aside, though, just remember that an over-compliant child will usually do exactly what you tell him to do, so when you give him the instructions, make sure that it really is exactly what you want.

NON-COMPLIANCE AND UNRESPONSIVENESS

As you might expect, there is a flip side to this figurative coin. There will be times of non-compliance or delayed compliance, even in a normally compliant person (keep in mind that these compliance issues will occur into adulthood, so this is not applicable exclusively to children). And it’s always hard to explain exactly why this occurs because it differs from situation to situation. I've found, however, that when I decide to give up on a task (or at least delay and evaluate it), it almost always is for one of four reasons:

Either...

1) I cannot see the end; i.e. the many details of the task become so overwhelming that I can no longer visualize what the finished product will look like, and being able to visualize the end goal is absolutely necessary for me to complete a process, because it tells me how much time, or how many more steps remain until the end. That way my mind is not left to race, speculate, or otherwise frighten me into shutdown mode.

2) I can see the end goal, but cannot visualize its relevance to my well-being, or I recognize its futility. For example, you would not be able to get me to participate in an event which required me to do something I knew was beyond my limitations, such as run a 10K race or something like that. I may be able to see where I’m ultimately going, but I can also see that either I cannot physically do it or it will not help me or prove anything even if I do complete it.

3) Something about the task frightens me. Mind you it is quite common for autistics to have very peculiar fears, which many people do not even pick up on, much less understand. For example, I have an overwhelming fear of failure and abandonment, as well as inconveniencing other people (I know some NTs have this fear as well, but try to follow me here). The very thought of it can send me into withdrawal. If I were told to do something and I had the slightest inkling that I might invoke any kind of negative attention by doing it in a way that differed from what was expected, I would try to avoid doing it.

4) The command disrupts my rhythm and causes me to lose my bearings. I then have to stop and process the request before I can do it. I have to be able to see the end result and do the task according to my own interpretation of how to get to that end result. I will eventually be able to attempt it, but only after I have processed it thoroughly. If someone demands an immediate response during this processing period, I will be unable to complete the thought process and it will usually cause me to panic.

I think the biggest reason for me not always responding (or responding correctly) was that when I couldn't make a picture out of what was being said to me, I wouldn't know how to respond appropriately. And I was always very self-conscious of how I sounded so I never wanted to say anything unless I knew what I was talking about. That was mostly because I did not want to invoke a response that was not deserved. Consequently, people who show themselves to be more likely to misunderstand my intentions are less likely to be able to reach me, because I shy away from saying anything to them. It's not necessarily that I don't like them, it's just that I don't like trouble, and I don't like to be misunderstood. So if you show yourself to be prone to misconstruing my words and actions, then I'm basically going to have to see you as a source of uncertainty and anxiety and I will have to stay out of your way until you can prove to me otherwise.

Most of these people never prove themselves otherwise. This will either be because 1) they don't realize that they need to, or 2) they just assume that they have read me correctly and believe that they already have me pegged too firmly to be convinced otherwise. Since these types of misunderstandings cause me to panic, I have no choice but to avoid contact with these people.

SO WHAT CAN BE DONE?

In case you didn't catch this implied tidbit...
This dissection of non-compliance from an autistic perspective reveals that in dealing with over-compliance, it will be possible, at some point, to give too much input at once and cause an overload. Therefore, it is important to make a concerted effort to learn your child's limits and put enough on him that he does the job right, but at the same time know when to stop, so that you don't bewilder him. It's a delicate balance that will take some practice in order to learn. Remember that visual learning by example is often very useful, so if it is a complicated task, let him closely watch, or even help you do it the first few times. That will help him to catch on much more easily than by following a verbal set of instructions.

But I will get to that a bit later...

One thing that I want to stress about this difficult and sensitive issue is that even though autistic children require special ways of going about complying, they can be taught boundaries. It is important to note this because part of being secure is knowing where the boundaries are. Therefore, you won't be doing the child a favor by letting him get by with whatever he wishes, because if it is something bad, he will get a negative consequence out of it sooner or later, and this will cause confusion and further stress in the long run. If you allow this to happen, he will begin to see that sometimes it's OK and sometimes it isn't, and upon discovering this he may begin to have meltdowns when faced with the decision of whether or not to do it because he will be unable to predict the outcome. I was very needing of acceptance, as are many of the autistic children I have met, and it's difficult for someone with social blindness to find acceptance when no one clarifies the dos and don'ts. Just remember that it is very important to know your child, and use what you know about him as a guide to deciding the best method for teaching him the rules and boundaries.

Keep in mind that visual learning is often key, especially if you're dealing with a nonverbal person. By visual learning I am talking about learning by example. In other words, if you want him to put away his dishes when he's done eating, always let him see you put the dishes up. You might even get in the habit of saying "well, I'm done, I'd better put my dishes in the sink," or something to that effect. Also, make sure you never let him see you leave dishes out when you're done or else confusion will ensue and progress will be lost. Also, when giving a verbal command, bear in mind that an autistic person often has to internalize the command and work it into his mental schedule of events. Often it is a good idea to say something like "when you're done, you need to put your dishes away because our house will be messy if you leave your dirty dishes out," rather than waiting until he is leaving the table and then calling him back because he forgot to put away his dishes. By the time he has decided to leave the table, he has already planned his next destination, and pulling him back will cause him to lose his bearings. By telling him ahead of time, you have given him the prompt in front of whatever he plans to do after he finishes eating, and he will be more likely to remember on his way out. Also note that I suggested you give him the reason for putting the dishes away. Telling him why you want him to do something will help him to see why people do the things they do, that way he is not hindered by his lack of social insight. This process will probably have to be repeated regularly at mealtime in order to allow the concept to set. Once habits like that form, they often stick. On the flip side, bad habits stick just as well. This procedure can be useful for any household rule.

And let me stress again (I can't stress this enough), don't be afraid to explain to your child why each rule exists. Autistics are often very logical and will usually come to understand your reasoning, although not always immediately. In fact, they may be quick to counter by telling you how it contrasts with their reasoning. Although this can appear combative, it is usually just the individual's way of expressing a need to compare/contrast the way you see things to the way he sees things, and from there try to rationalize a solution based on both viewpoints. Upon noticing this difference in viewpoints, he may need to analyze that 1) the two different viewpoints (his and yours) exist, 2) why the two different viewpoints exist, and 3) how he can use that information to do the right thing without sending either of you into fits. It's not like the NT child where social intuitions are in place and abiding/not abiding by the rules can simply become a power play. An autistic individual may not even realize that his actions appear defiant or combative to others. Since autistic individuals lack the natural intuition of understanding why people follow the protocols that they do, they will often welcome any and all clarification they can gather. It will take away the confusion and guesswork, and your loved one will likely remember the behavior much more effectively once all of the puzzle pieces are given to him.

Lastly, be patient. For nonverbal children, visual learning by example may be the only way to go, and it can take a long time, even if you are consistent. If you break your consistency it is likely that you can expect the process to take even longer. You may actually find yourself having to abide by your own household rules, explaining them as you go, in order for your child to observe and follow suit.

SHARED BEHAVIOR BETWEEN AUTISTIC AND NT??

In response to my aforementioned example where I stayed in the truck even though I felt like things had gone awry, it is likely to be pointed out that my behavior could have just as easily been displayed by an NT child as an autistic one. This is entirely correct, and it bears explaining, because this touches on one of the biggest reasons why autistic behavior is misunderstood to the degree that it is. Believe it or not, it is in fact fairly common for a particular behavior to be exhibited by both autistic and NT children, and while the two exhibitions may appear similar in outward form, there are different inernal perceptions of the behavior being exhibited. In other words, motive is different.

I didn't really intend for the truck example to be an example of this though. I was looking for a common scenario of general compliance that I had experienced, which I'd hoped everyone could relate to. It just so happens that this example touches on my next point.

A more obvious example of the NT vs. autistic shared behavior is the meltdown or tantrum. Both NT kids and autistic kids exhibit this phenomenon. The difference you ask? The biggest difference in my opinion is the reason the tantrum is being thrown. In the NT child it is most often because he did not get his way (and tantrumming has achieved his way in the past). In the autistic child it is more often because a stimulus has become too overbearing and he is unable to regulate his environment. He becomes gripped by terror once he loses the ability to regulate and comprehend these stimuli, and outwardly expresses it by screaming, crying, hitting, etc. because he lacks the means to communicate his need for help. His is more often driven by fear than it is by anger.

To further complicate things, NT kids can occasionally show meltdown- type episodes in response to an intense fear, and likewise autistic kids can show meltdowns that are anger driven, but these reverse scenarios occur less often, and are usually less severe.

A good example of this: my NT mother will exhibit a meltdown if she sees a spider cross the room. Why? She has an unnatural fear of spiders, of course. And once the spider is either dead or outside, the panic subsides. Why? Because the stimulus has been removed. She didn't freak out because she is autistic; but rather because she encountered a stimulus that invoked uncontrollable panic. A problem easily solved because she immediately communicates that she's scared of the spider, and to stop the fiasco, someone either smashes the spider or captures it and takes it outside (two guesses who always chooses the latter option ).

Now let's bring in an autistic child who has limited pragmatics skills, if even verbal skills to begin with, and confront him with his worst fear: lack of self regulation. Just like my mom, he freaks out. So to solve the problem, you just remove the stimulus, right? Now how are you gonna do that? First of all, you think he's screaming because he didn't like what you told him to do or because you suddenly took his toy away. So IF you were going to appease him, what would you do? You'd fix the wrong stimulus of course. Sure he might stop crying if you gave him his toy back, but only because the toy is his comfort zone right now and it's the only thing his mind is prepared to deal withat the moment. He'd have been happy to have come with you if he'd somehow known ahead of time that you would need him at that moment. And because he is unable to communicate this very complex emotional situation to you, verbal or not, you experience a much more lengthy, and much more severe meltdown than you saw with the NT person whose stimulus was easily communicated and subsequently removed.

The point is, autism is a neurological problem, not a behavioral problem. Now don't get me wrong -- there are no less than a dozen behavioral flags that are a reliable signal for autism, but the the thing is that the behavior itself is not the root of the problem (although that's usually all that ever gets looked at).

In other words, I don't stare off into space because I am autistic. I stare off because my mind has outrun my body and I need a minute (or two) to re-align myself. I could re-align myself by asking questions, but since I lack the pragmatic skills to do it correctly, I would likely be accused of being hard to get along with, impatient, or pushy, which would lead to further stimuli that would send me over the edge into panic. While it looks like I am doing absolutely nothing, what I am in fact doing is taking a moment to wrap up the thought process that has raced out of control in my head, and bring my thinking back around to where I'm actually at and what I'm actually doing.

In other words, the mental lapses and lack of pragmatics are the direct result of autism, whereas the meltdowns, zoning out, and stimming behavior are a direct result of needing to discreetly correct a mental lapse or gain bearings, and thus an indirect result of autism. Therefore, a behavior such as zoning out can be shared by NT individuals, who may also need to "take a moment," but perhaps not under those circumstances, and not as urgently -- they can often use their social ability to utilize the other people around them for comfort. Thus they can push through and "take a moment" at their leisure, unnoticed. The autistic person on the other hand, recognizes that his peers, through their lack of understanding, pose a further threat at the moment rather than a comfort. Thus immediate self- soothing is necessary to prevent making a scene. Furthermore, the autistic person may instinctively zone out without putting any thought to it, because due to his social blindness, he does not realize that other people are watching him and judging him.

It is for this reason, above all others in my opinion (and mind you there are others), that autistic behavior is so badly misunderstood.

Chapter 6

STIMMING AND FIXATION (COLLECTIVELY KNOWN AS TICS) – IF YOU SEE ME ROCKING... KNOCK WITH CAUTION

Stimming and what I will refer to as fixation are often confused, and let’s face it – there is a very fine line between the two, and they very often have a similar outward appearance to the untrained eye. Thus, it’s totally understandable that the differences are often overlooked.

Fixation, as I'm going to refer to it for lack of a better word, is where you take something that you have an interest or concern with and then play it out in real life so that your "dream comes to life," so to speak. It's basically taking obsession a step farther. It can be visual, auditory, or physical, and it is sometimes repetitive. One example from my past was drawing maps. I have always had a strong interest in maps, roads, cities, and boundaries, so by drawing the maps, I was able to bring to life what I was seeing in my mind. I spent hours at a time drawing roads and maps, as well as building models of things I saw along roadways. I spent a great deal of time talking about them as well. Another (from my early childhood) was cats. I would draw pictures of cats, collect stuffed cats, collect books about cats, and even pretend to be a cat. All of these things were aimed at making physical what was otherwise imaginary, and they encompassed large chunks of my time because the corresponding interests are intense and can be difficult to see past. They can go on for several minutes to over an hour at a time, and most often occur when the mind is allowed to roam. Sometimes physical or visual fixation is not possible because of compromising circumstances (i.e. you can't draw a map while you're standing in the check out line at Walmart). However, the interest can take over at any time, so when circumstances are wrong for physical/visual stuff, sometimes auditory fixation is still possible, and it often takes the form of asking a zillion questions about the interest, or spilling one's guts about it to someone nearby. But unlike an auditory stim, which is a short, repetitive, and sometimes unintelligible sound or word, an auditory fixation is a well-constructed spill about a particular person, place, or thing and can present itself repeatedly over a period of weeks or months, becoming more and more well-constructed as time progresses. If fixation is prevented, for whatever reason, it will often degenerate into stimming behavior, because it will create stress that needs relieving, as will be explained in the paragraphs ahead.

A stim (I think this is short for "self-stimulatory behavior") is a form of stress or anxiety relief and is usually physical, but can also be auditory, verbal, or visual and takes the form of a repetitive tic of some sort. These tics involve, but are not limited to: rocking, swaying, foot/finger tapping, flailing/flapping of limbs, eye twitches, zoning out or dazing, spinning, unusual body contortions, and continuous or repeated rubbing/scratching of various areas of the body. They can also be auditory and those are characterized by short, repetitive sounds made with the mouth, ranging from full words or phrases (talking to oneself/muttering) to unintelligible chatter to non-vocal sounds made with the tongue, lips, teeth, or other parts of the mouth. Sometimes stimming can take visual form and is characterized by staring at things like flashing lights or swinging objects, or also tracking one's vision along horizontal or vertical beams (striping, poles, boards, fences, etc.).

Understandably then, the two can appear very similar. The main differences are:

1) The reason why the actions are occurring. Fixations have the intent of playing out a fantasy or kinesthetically exploring a strong interest while stims are aimed at dealing with some sort of environmental sensory overload.

2) The length and frequency of the particular action. Stims seem to be shorter in length, i.e. repeated in quicker succession, whereas fixations can be very long, drawn out, and focused and can spread over several minutes or longer before the cycle repeats.

Other than that, they can sometimes be very difficult to discern from one another from the standpoint of an outside observer.

My experience with stimming goes sort of like this:

When I start getting overloaded with sensory input, I will start to get physically uncomfortable. My skin will sometimes seem to "crawl" or become irritated, or I will experience localized muscle fatigue in various areas. The area of discomfort usually determines the stim I use, which can be anything from finger/foot tapping, rocking/swaying, body/facial contortions, or rubbing/scratching the affected area. Sometimes discreetness comes into play here and I can resist some of the more eye-catching stims for a while -- at least until I have the opportunity to get away from other people. Sometimes the walking required to get away from the crowd serves the purpose of relieving the discomfort, and sometimes results in an urge to climb trees or other objects.

For me stimming seems to be an almost necessary way to get rid of nervous energy. Sometimes if I am made to stop it freaks me out more. Fortunately I discovered more discreet ways to do it when I saw that some of my earlier methods appeared very bizarre from the outside.

Later on I kind of figured out that if people are going to think I'm weird, it's going to eventually happen whether they see me stim or not. I still am more discreet with it than when I was little, but certainly I make less of an effort to be discreet than I used to. Suppressing the behavior can sometimes take a lot of energy and effort, and there are a lot of times when holding it back really does not pay off enough to make it worth the trouble -- especially when stimming helps you survive overloading situations for longer.

SO WHAT CAN BE DONE?

As I mentioned earlier, stimming, to make a long story short, is sort of a way of relieving stress or taking out frustration. Thus more stress = more stimming. I remember talking some about stimming in a thread on the AutismWeb message board where I explained how you shouldn't try to stop the stimming unless it's really causing a problem, and that was mainly because of stimming's function as a stress reliever.

In any case of stimming, the more intense the overload, the more pronounced and more frequent the stimming behavior. And a really intense or pronounced stimming display can sometimes (but not always) mean that the affected person is on the brink of meltdown, so abruptly forcing the behavior to stop can sometimes pull the trigger because forcing the person to stop is a further stimulus, which forces a further response. And a person who has reached maximum overload will be unable to muster a response at that point. They will usually break into panic instead.

Remember that, as a parent, even though stimming can appear odd and unsightly, you should use extreme discretion about when to curb it because it is a way to get rid of frustration that has no other way of being vented. Now, if it's something that you really don't want other people to see, the only thing I can think of is to sort of "induce" him to find another stim of some sort. The best way to do this is to very subtly find a way to make him aware of the action and become, for lack of a better word, embarrassed about it. I don't mean tease him -- God knows he'll get enough of that later on. I'm talking about something that makes the child see it on his own rather than having it pointed out to him publicly. For example, it may be possible to make a child self-conscious of the behavior by letting him see himself on video or something (don't point it out to him, just let him watch it -- maybe in a video that is of something else but just includes him during one of his stimming bouts). It will take advantage of the visual learning aspect without actually calling attention to the behavior. That was one of the things that got me to thinking. After seeing myself do those strange-looking things, I subsequently developed more discreet stims like tapping my fingers or feet as opposed to violent rocking or swaying or body contortions, and in doing so I all but lost the old stims -- although in times of very high anxiety sometimes the more visible ones still show up. For more verbal children it will be possible to pull them aside (sometime when the offending stim is not occurring) and discreetly point out that the particular behavior is unsightly. All too often an autistic child is looking for acceptance, so he should be reasonably willing to take notice the next time people look at him strangely.

As for fixation, a great deal patience may be in order. Fixation is generally the result of an intense interest that can be difficult to see past. Often the person will not be satisfied until enough information is gathered to satisfy all of the associated questions. I have found that whether I am allowed to fully indulge my interests or somehow prevented from getting near whatever it is, the interests pretty much have to run their course.

Parents will probably have to use their own judgment as to which fixations to indulge and which to suppress. My opinion is that if the interest is not harming anything, then it might as well be indulged. Sometimes these obsessive fixations become exceptional talents and abilities. At the very least, the fixating individual will experience less stress in being able to find the answers that he seeks. It just might look a little odd to everyone else.

Chapter 7

MELTDOWNS/TANTRUMS/PANIC ATTACKS – I DON’T HATE YOU, BUT I CAN’T PREDICT YOU EITHER

OK, here’s what seems like another signature characteristic of autistic kids: those massive tantrums and physical rebuttals that you see on Oprah and 20/20. What on Earth could be up with that?

Well let’s see if I can shed some light. First thing's first, keep in mind that "meltdowns" (outward tantrum-like or otherwise vicious outbursts) or more often in my case, "shutdowns" (inward withdrawal from surroundings) are extremely terrifying to the person who exhibits them because they are the direct result of the person getting disconnected or disoriented in respect to his world as he knows it.

I will try to diagram one of these "meltdowns" from my own viewpoint.

Let’s start by taking a look at my comfort zone. I basically lack, to some degree, the natural ability to cue from other people in order to determine my actions. So in order to not become disoriented or confused amid a group of people who are interacting comfortably with one another, I need to get a firm grasp on what's going on around me. This is usually accomplished by being aware of the possible outcomes of my actions in a given set of circumstances. Any "unknowns" (i.e. elements of a situation which I haven't yet taken into consideration) must be dealt with before anything else can be accomplished, because only when I am in complete knowledge of my surroundings can I proceed without fear.

When you suddenly change the plans, rules, environment, etc., you suddenly throw in a multitude of these "unknowns" simultaneously, which must then be simultaneously dealt with in order to maintain composure. I say "simultaneously" because it is often necessary to instantly make an appropriate response in order to avoid causing drama, which means the window for processing is very short -- often 2 seconds or less. At some point my mind becomes overloaded with details and goes into what amounts to a short-circuit or, in the sense of a computer, a "freeze-up." At this point I will "shut down," or basically cease to interact. I know I can no longer cope with my surroundings so I tune them out, figuring that any further reaction to them will be an incorrect or inappropriate one.

Now at this point one of three things will happen: either 1) I will process the new information within 5 or 6 seconds, respond as best I can, and use one of my scripts to save face; 2) if I cannot snap out of it within a few seconds, the other people will become disinterested and leave me be (in which case I will process the new scenario, recover, and try to rejoin the group again at that point); OR 3) someone will force the issue, and demand that I respond, not knowing that I have lost connection with my train of thought. Remember that since I have few natural social skills, the ones I exhibit are the result of careful planning, stored information, and repetition. Thus, with stored information blacked out, I am suddenly thrust into an alien world when expected to make any type of immediate outward relation to another person. Now I am forced to figure out a socially appropriate response without my mental database of scripts to draw from. When that happens my mind races so quickly that it does not grasp onto anything, and the resulting outburst you see is nothing more, and nothing less, than the frustration associated with being in a seemingly no-win situation that can't be escaped. I say "no-win" because it's basically a given that if I make a response at that point it will be an inappropriate one, and if I do not respond at all (i.e. remain in shut down mode) the party addressing me will incorrectly deduce that I am insulted or that I disapprove of what they have told me. Thus the frustration you see is usually the result of not knowing what to do and having no way to gather the needed information in time, rather than being the result of the actual thing that was said or done.

It's analogous to the girl in the horror movie who screams maniacally because the monster is about to eat her and she is backed into a corner with nowhere to run except into the monster's jaws. Only in my case, the figurative "monster" is invisible, and when I react to what is very real to me, no one else can really see or relate to it and so it appears that I am grossly overreacting to a less significant, but more visible, incident. What happens is basically the people around me displace the feeling of "lost-ness," to which I am actually reacting, to the visible situation that apparently caused the outburst. Back to the analogy, if the monster in the horror movie were not visible it might appear as though the woman were screaming because she had reached a corner, and moviegoers might similarly believe this to be an over-reaction because she could seemingly just go in a different direction. They would not realize why she was really pinned into the corner.

Once I began to realize the effect that these shutdowns and meltdowns had on other people, I began to go out of my way to find ways of avoiding them. I would be willing to bet that other autistic people, whether it be by non-compliance or over-compliance, are making a nonverbal effort to avoid this terrifying situation, especially since a person reacting to it will inevitably compound the problem by making a further environmental change (trying to "help") rather than rewinding or pausing the situation (depending on circumstances) to allow for processing.

SO WHAT CAN BE DONE?

First of all, remember that meltdowns are ten times as horrific to the person doing it than they are to the people observing it, so punishing the behavior is unnecessary. Trust me when I tell you I don't do it for attention or to force my way. The panic I feel is involuntary and simply has to be dealt with in the right manner in order to keep it from overtaking me completely.

The key thing to remember about a full-scale meltdown is that once it is in full force, it is too late to rationalize with the person concerning the issue that apparently set it off. Why? Because the reason for the panic is not what you think it is. He is not throwing a fit because he doesn't want to do what you told him. Rather, it is because he has become disoriented and lost in all of the sensory input. As a result, he cannot resolve the fact that you appear dissatisfied with what he is currently doing. So seeing no other recourse, he becomes gripped with anxiety, panics, and melts down -- and will not be able to regain composure until he can figuratively get his feet back on solid ground. That means that if you try and resolve the situation by punishing him, scolding him, or forcing him through the task you've given him, you're only going to make him progressively more frantic because all he is going to see is that you are becoming progressively more displeased. The person has to first calm down before anything else can happen. The fit has to literally de-escalate in the reverse order in which it happened. In other words, if the meltdown happened in this order:

change in plans--->question/resistance-->zone out-->tantrum

then it can only de-escalate as such:

tantrum--->zone out-->question/resistance-->change in plans

In other words, if I'm having a meltdown, I must first CALM DOWN. Nothing is rational during a full meltdown, so don't even try. Hold me, rock me, reassure me, lock me in a padded room, whatever, but don't ask anything else of my mind -- at this point it just does not exist.

Once I calm down, now the tricky part -- where did the problem begin? I have to re-trace my steps to that point and re-boot. This is where so many people make the mistake of displacing the problem. In order to continue from where I was before the situation got ugly, I have to go back to the point NOT immediately prior to the outward meltdown, but rather, back to the point at which I first showed trouble. This point is usually marked by a question or a look of utter confusion or exasperation. It's vitally important to re-trace steps. If I can accomplish this (it can be done more quickly with the help of at least one patient or un-offended person), then all I have to do is re-compute, which means going back to the process described at the beginning of this chapter -- I re-assess my circumstances and once again become aware of the possible outcomes of my actions in this new set of circumstances. Once I have done this I will be functional once again, and will do well if all memory of the past few minutes is erased as completely as possible. Any references to my previous behavior will put further doubt into my mind as to my level of acceptance and cause me to be much more reserved (in essence prolonging the shut down period), which means keeping me on edge and thus much less fun to be around.

So to make a long story shorter, if you don't want the meltdowns to happen, you must prevent the panic and frustration from erupting in the first place. Eruption can usually be avoided by recognizing the warning signs:

*Sudden and dramatic increase in stimming behavior (caused by a sudden feeling of alarm or panic)

*Zoning out (can be misconstrued as refusal to comply)

*Asking analytical questions when a change of plans or sudden command is issued (can be misconstrued as arguing or back-talking)

*Muttering to oneself (this is a means of "thinking out loud." Think of it as a sort of an auditory stim, and a means of getting one's bearings in an emotional sense. Parents -- if you can't understand what he's saying, don't assume it's personal and call him out on it. You'll pull the trigger.

If you observe these signs it can help matters if you'll give some time for processing. I know a lot of parents want immediate compliance, but sometimes this is beyond our emotional threshold. I always found that it helped me considerably if I was told way ahead of time if there was a big "to-do" coming up, and periodically reminded about it. Predictability can do wonders. I got better when I learned to tell time. I wore a watch around from the time I was in first grade, and even before that, I consistently used a clock as my guide. As long as I could predict when things were going to happen, it was easier to plan my fixations in accordance. Often my mom would warn me 30 minutes to an hour in advance of mealtime, bath time, and bedtime, especially if the planned times deviated from the norm. Because of this, I think it would help any autistic person if they are given a watch as soon as they are able to comprehend numbers. Once they learn how to tell time, their watch will be a valuable tool in preventing the meltdowns that happen because of predictable or routine events. That will free up the parent to deal only with the more spontaneous events, and it will allow the child more time to focus on them as well.

I never really resented doing as I was told, but sometimes a sudden command went completely against my mental script for the day, so doing it required a new script, which usually took some time to formulate. In short, a person who is exhibiting the aforementioned warning signals is telling you that some down time is needed and should be allowed.

Let me say, at this point, that I noticed when I worked with preschoolers that some kids, especially those on the low end of the spectrum, tend to seemingly go into meltdown instantly, without the warning signs, and I think it may be that they have not yet developed the mental lines of defense that, in my case, came from wanting to please others and realizing that outward tantrums accomplished just the opposite.

Now mind you, I'm not saying that your child should be allowed to not obey in order to avoid meltdowns. What I'm saying is, see if you can get to the root of why a particular command set the person off. Rest assured that there is a deeper reason than him just not wanting to comply, and it probably has something to do with him not being able to process the amount of information that was thrust upon him at once -- but more on that later.

Some people mention their children hiding in bedrooms, closets, bathrooms, etc. either during or after having meltdowns. Although all autistics are different and I can’t speak for all of them, I know that if I were hiding in a secluded area after a meltdown it would be for one of two reasons:

1) I need to be away from the people I've been around in order to calm down. These people are either causing the meltdown directly, or making it worse by forcing me to respond to them while I'm emotionally/mentally incapacitated.

2) I am aware of the uproar that my behavior has caused and am afraid to face my peers because I assume they are still mad at me for it. If they are, and they question me about it, it could re-ignite the meltdown -- which I want to avoid at any cost -- so since I can't go out there, the only thing I know to do is seclude myself for as long as possible. The more time that elapses between my tantrum and my return will be more of a buffer to the other kids' memory, and maybe if I stay away long enough, they'll forget it completely or be out of the mood to talk about it by the time I return.

In the case of Scenario #2, the child has begun to realize that his actions are not appropriate. He is also realizing that he does not know how to control the behavior. This is where self image begins to come in and it can be a breeding ground for anxiety and depression. If the person is beginning to hide himself from others, the first and foremost thing to do is give him his space. When he does come back (and he will), make sure he knows that he is still accepted. You can always address the thing that initially upset him at a later time. Just remember that he is having as much trouble coping with this as you are, and the last thing you want is for him to begin to feel like he is expendable or unwanted.

Now, before I go any further, I know I am inevitably going to encounter a critic such as this one I got on an autism message board:

“This is... interesting..., but I don't see where you discussed meltdowns. I can see where when you shut down that is painful for you to deal with, and difficult for those around you that don't understand what is happening, but it's the complete opposite response to what a meltdown is...

I would describe a meltdown as a monster tantrum, which is almost impossible to stop. My son is so out of control of his decisions by the time he has reached a meltdown, that he will bang his head with force into a window, or bang his head on a concrete floor and will not physically feel the pain. He will scream, bite, throw, hit, head bang and have no concept he is hurting himself or any one in his way...

People often use the word meltdown, in situations where it's something much milder, and dilutes what a true meltdown is. If you've seen a child have a major meltdown, where they're either going to injure themselves or someone close by, you won't have to ask if it's a meltdown, it's very obvious.”

OK. While this is a very understandable viewpoint from someone whose child has the more violent type reactions, I must make one point very clear, because this is important to know:

Meltdown, or basically full-scale panic, is where all the feelings that I described are pushed beyond the capacity for reasonable thought, and it all boils over into what is usually described as a tantrum. The often unheeded "shut down" or "zone out" phases are often a prequel to this, and are usually the last line of defense, which is all too often shattered by a further stimulus, thus pulling the trigger.

I think at this point that I have adequately described the lack of environmental awareness and responsiveness, as well as the outburst itself. I think what many people don’t immediately catch is how the shutting down, zoning out, and "backtalking" (which I described in much lengthier detail) can factor into and lead up to the more visible outward tantrum or outburst.

Once the person's emotions have boiled over, and he is in full-scale panic, the only thing you can do is freeze frame the situation and allow it to pass. You can't actually communicate with your child when he is in this condition. Once he comes out of it he will revert back to the shut down stage, which is where you can begin to bring him (or he can begin to bring himself) back to earth.

As I said (and I'm not assuming that any particular kid applies here) some kids on the very low end of the spectrum seemed to go off into meltdown immediately without showing any cognitive warning signs at all. Regardless of why this occurs, I am fairly certain that these sudden meltdowns are for similar, albeit simpler reasons, and should probably be dealt with in the same way, as calming down was still always the first vital step with these children in the recovery process.

Also, remember this: there is always a noticeable outward expression of some sort when I use the term "meltdown," but different kids/people express it in different ways, and this is mainly due to individual disposition. Regardless of how the tantrum manifests itself, however, the emotion is the same: gripping fear, panic, or anguish sufficient to obstruct rational thought or logical reasoning. Just because one kid is throwing himself through walls or windows does not mean that he is not equally as inconsolable as the kid who is simply screaming on the floor or crying secretly in his room. And thus, the problem must be dealt with in the same manner, regardless of what it looks like from the outside.

BE CAREFUL NOT TO MISCONSTRUE WHAT YOU ARE SEEING!!!

When dealing with a tantrum or rebuttal, it is important to view the issue from an autistic point of view rather than an NT point of view. It is very easy to relate these tantrums to those of NT children, which are often caused by the child not getting his way or not getting to do what he wants to do, when he wants to do it. And it can certainly appear this way with an autistic child (e.g. you tell him to get off the swing and he does not respond. You then make him get off the swing and he falls to the ground kicking and screaming).

Tempting and sensible as it may seem, try not to buy into this misconception because it is very often not the case at all. It's an entirely different viewpoint with an autistic child going into a meltdown. Take a closer look at the incident: did the child know how long he would be allowed to swing? Why did he want to swing? Was he fixating on the swing (or while on the swing), and if so, was his fixation satisfied yet when you forced him off of the swing? How long did you give him to process the fact that he would not get to finish what he was doing? Was it long enough? How long does it normally take him to process a new set of instructions when they are suddenly given to him? If you do not know the answers to these questions, then it's likely that getting to know your child's tendencies a little better could prevent a large number of these meltdowns, because you will be better able to prevent him from losing touch with his environment.

It's really not so much about getting your way. I understood early on that I couldn't always have what I wanted, and I always factored that into the equation as I saw appropriate, depending on the circumstances. It seems to me that in NT children, on the other hand, getting what you want is sometimes a power play for them, so they will often scheme to get their way as sort of an achievement over the barrier of authority. NTs do this all the way through adulthood. It is part of the natural process of self-assertiveness, and while it evolves as the child ages through adolescence and adulthood, the basic principle remains the same.

From an autistic perspective, however, the goal is almost solely on regulating environmental stimuli and being able to predict what these stimuli will be and when they will occur. I never gave a rat's ass (pardon the expression) where I stood on the hierarchy of dominance and authority. All that ever mattered to me was that I was in control of my own environment and could prepare to deal with any and all environmental stimuli. Only when things are more or less in order from that perspective will I be comfortable, regardless of whether I'm the boss, the ring-leader, or the mere lackey. So, when dealing with a meltdown (or the warning signs preceding it), what you are seeing is a person whose environmental stimuli are becoming too numerous or overwhelming for him to organize and prioritize. In a low functioning child this set of stimuli may not range past seeing his blocks lined up in a particular way or keeping the string on the mini-blinds in constant motion, while for a higher functioning child it may be a complex and intricate array of internal as well as external aspects. In the latter case, these factors are sometimes interchangeable through the correct use of words, which may explain why it is sometimes easier to coax a higher functioning child back away from the threshold of meltdown than it is for a child with "classic" autism. Generally the less verbal the child is the more tactile their comforting stimuli are. With the highly verbal ones sometimes words and wording can present discomfort more so than the actual request that is presented. They may be melting down because you didn't deliver your request in a manner they could quickly process, then forced a response before they were ready, rather than because they didn't get their way. In nonverbal kids their comfort zone is extremely tactile and physical, so they may be melting down because you had to take their toy away, move them, or otherwise presented a physical sensation that they were not ready to process. I have experienced both of these types of discomfort, so I am assuming that if I were nonverbal I would only be experiencing the physical ones.

So simply put, while the child seemingly reacts to not getting what he wants and not getting to do what he wants to do, he is actually reacting to having trouble regulating himself and his environment, and the extra demands put on him disrupt that or interfere with directing energy towards self-regulation, thus pushing him over the edge.

The most important thing to remember is that no matter what the meltdown looks like from the outside, it is necessary to first allow time to calm, and then retrace the steps in order to get things back on track. Remember that nothing is doable until the panic subsides.

Chapter 8

PHOBIAS, FEARS, AND OBSESSIONS -- DON'T TELL ME ABOUT IT UNLESS YOU'RE GOING TO TELL ME ALL OF IT!!

Phobias, or should I be more specific: WEIRD phobias, are very common in autistic children. This is a tricky subject because these fears, at least in my case, can have many origins and reasons. Some of these reasons can be very off the wall, but I think that, when you really get to the bottom of it, they all have basically the same root. And that root is perception of one's own environment.

Many of the strange fears I had originated from my perception of other people's reactions. I did not want to do anything that would cause any sort of "drama" or major change of pace from the adults because I felt like I was making a scene (not to mention it caused an unexpected change in plans and thus a rather frightening sequence of chaos from my perspective). So a lot of times, when something would happen that would cause the adults to react loudly or in any way that seemed dramatic or negative, the fear that the uproar invoked would be displaced onto the object that seemed to have caused it.

I don't know if that makes sense but I will give you a real-life example that may ring more clearly. In second grade I went through a phase where I was terrified to flush the toilet or even sit on the toilet. I would hold my bowel movements in for days at a time to avoid having to sit on the toilet. My parents thought that I was afraid of the toilet, and even that I was refusing to go to the toilet (which I was, but not necessarily in a non-compliant way).

Turns out what had happened is that our pipes were getting roots in them and it was causing our sewer to slow down, so sometimes when you would flush the toilet it would back up and overflow, especially if you flushed something solid. Needless to say, an overflowing toilet causes a swift and seemingly panicky response by the adults in an effort to stop the overflow. This chaotic reaction, not the overflowing toilet itself, was terrifying to me. But since the toilet had caused it, I knew that there was risk involved with flushing it. I also knew that the phrase "stopped up" referred to a solid mass blocking the drain, so I became afraid to flush anything solid, including bowel movements, down the toilet. However, I couldn't just go and then leave it behind and not flush it because that also produced an undesired reaction. Thus I would hold it in as long as possible and refuse to use the toilet.

Unfortunately there was no way I could explain this to anyone, so no one understood why I was afraid to sit on the toilet. In fact I was not afraid of the toilet at all, but rather a frightening turn of events that could be triggered by messing the toilet up.

There were other times, though, when I misconstrued what was said about a particular place or object, and that misunderstanding would lead to a phobia attached to that particular place or object.

I'll tell you a story about a rather crippling phobia I had when I was about 2 1/2. My mom used to get upset when I would go in the back yard barefoot because stray debris was sometimes present in the back yard (glass, metal, etc.) and she was afraid I would cut my foot. But all I knew is that when I would go outside she would scream "No! come back in here! You're bare-footed!" And I associated that anxiety with the phrase "bare-footed." I didn't know what the phrase meant, but I knew that anything that could freak my mom out like that must be a pretty tough customer, so I figured that something really scary-looking must be out in our back yard that would get me. So I associated the phrase "bare-footed" with the meanest, scariest looking object that I saw in the back yard, which turned out to be an intake manifold that my dad had taken off of one of his old cars. So after that association, now instead of worrying about me going into the back yard barefoot, my mom couldn't get me to go outside for anything because the "bare-footed" would get me. Of course, she had absolutely no idea what I was afraid of, but I would always say "it's out there." So, since life couldn't really go on as normal without me ever passing through the back door, she finally had to drag me, kicking and screaming, out into the yard to show her what the "bare-footed" looked like and identify it. She managed to convince me that if I would point at it, my dad would kill it (my dad was very big and imposing from my perspective, so I figured this was true). So from a safe distance, I identified the offending object and my dad promptly removed it from the yard, essentially solving the problem.

In both cases, what you ultimately see is an "unknown" stimulus in the environment that, until it is effectively explored and solved, is a constant stressor and thus a source of fear.

SO WHAT CAN BE DONE?

So how do you actually get to the root of the fear in someone who can't explain to you what is going on? Now that's the million dollar question. That's because many times the child is not even able to understand what's going on, let alone able to explain it to you. I can tell you, however, that I often played out my fears with my toys just as I played out my obsessions. Often a fear would itself become an obsession because I wanted to understand how an object that everyone else saw as trivial could affect me so adversely. And very often, in unlocking all the secrets about the object, either by asking a zillion questions or reading encyclopedias or books, I would gain knowledge of how the object fit into my world, and thus how to cope with it.

With that in mind, I think that someone who is dealing with a child that exhibits a bizarre phobia should be watched carefully during play in order to see if any clues can be garnered as to what the root of the fear is. A lot of times it's not the place or object itself, but rather a displaced idea that has somehow been attached to the object in question. In other words, an object, place, or idea can become a fear because the child associates some sort of frightening reaction with it such as, in the toilet example, a chaotic reaction to the toilet overflowing.

Unfortunately that's only the tip of the figurative iceberg. It sometimes goes deeper than just how you react to things, and there are facets to this that I still do not understand completely. Any kind of sensory overload can result in a phobia (see Chapter 9), so sometimes there are other stressors at play that cannot be controlled. Suffice it to say, though, that the more you can explain to your children, even if you think the matter is over their heads, the more aware they will be of their environment. The thing is, even if you watch how you react, you can't control how other people react. If possible you should explain why the reaction occurred, and what was done to resolve it. That will take some of the guesswork, on the part of the child, out of trying to figure out why the situation became chaotic, and when things will return to normal. If he is able to watch which actions are occurring, once they've been explained to him, he will eventually be able to predict what remains to be done until the problem is solved. It's all about predictability in these cases. So just as in dealing with compliance, social skills, and verbalization, it's important to talk to your kids, and include them in the conversation when possible.

But before you can begin talking about the trigger, you have to figure out what the trigger is. Sometimes it's complicated, while other times it's very simple; there are cases where the child simply thinks something is going to get them or eat them, just like what you see in NT children (what I like to call "moster-under-my-bed syndrome"). Other times it's a misplaced idea that has very little to do with the object that the child shows fear toward. That's why it's important to watch them play and pay attention to what they are saying. If something's really bugging them, they will sometimes, if not very often, throw you clues. Remember this, though: NEVER let them see you react to garnering a clue from them -- you don't want them to become afraid of role-playing! Always bring up the matter at a later time, as though you had thought of it on your own.

The thing is, I can tell you the things I went through. But each kid is different, and while the roots of the problem may be similar, the paths to those roots can vary from child to child, so it's important to know your child. Pay attention to what you're seeing them do, versus what they usually do, and use those things as clues that you may be able to plug in to what I am describing.

Chapter 9

ALL THINGS SENSORY – IF YOU'RE WEARING PERFUME OR SMOKING, YOU'RE ALREADY TOO CLOSE TO ME!!

I do my best to prepare for sensory input. After 28 years I have a good deal of experience knowing what to expect, when to expect it, and how to deal with it when it happens.

However, there are those sensory things that I just can't get over in a milion years. Certain sound frequencies, textures, smells, and appearances seem to cause massive sensory overloads that I simply cannot prepare myself for. For example, I cannot stand food that is soggy or gooey. If I use sauces such as mustard, ketchup, cheese dip, etc., I only use small amounts, and there has to be something firm or crunchy that can stabilize the softness. I don't do well with sliced bread, but tend to either use buns or seek out the "heel" pieces on the ends of the loaf for sandwiches, because the sliced bread packs down and gets soggy whereas the buns and end slices have crust all the way around and thus hold the firm texture better. Soggy textures will usually make me gag no matter how good the food is.

Smells are a big one too. For example, I can't deal with any food that has any kind of pepper in it, because the smell of peppers actually hurts my head. It just bombards my senses and causes me to not be able to concentrate on anything else. This is also true of onions, celery, potpourri, cologne/perfume, cigarette smoke, and most household cleaners.

There are a few particular sounds, lights, and physical appearances that can cause this overload as well, and I have gradually learned how to better cope with many of them provided I am warned in advance. If I know I can't cope, I know to just avoid the situation entirely, just like I would avoid a person who consistently reads me incorrectly.

Sometimes a stimulus that causes a massive sensory overload can become a source of fear, or even a full-scale phobia, because the sudden bombardment quickly brings the person to the brink of meltdown, and meltdowns are no fun.

Here's another story from my elementary school days. I had a phobia of the school bell that lasted the entire time I attended public elementary school, which was from 3rd grade to 6th grade. The reason? The school bells were located in the hallways, and they were extremely (should I say excessively?) loud and shrill. If I was in the hall when the bell rang, the sound would not only startle me, but it would hurt my ears and my head for the entire 5 seconds that it sounded. Five seconds of that was often enough to send me into meltdown, so I became terrified to walk the hallways of that building. I soon learned that the bell was on a timer, so I set the seconds on my digital watch to where the bell would ring exactly when the seconds rolled over to "00" for the designated minutes that the bell was scheduled to go off. This helped as long as I had my watch, but it did not keep me from clamming up if I happened to be in the hall when the bell was scheduled to ring (as was sometimes the case). I would often hold my ears tightly the entire time I was in the hallway, and no one would be able to communicate with me. The bell was especially loud in the library, so I had major problems there on the days where our library time bumped up against recess time. We were supposed to go back to class at 1:55 on those days, which was 5 minutes before the recess bell, but that didn't always happen. And when it didn't, I would grow more upset by the minute. If we were still in the library at 1:59, I would be frozen to one of the tables clutching my ears for dear life. Unfortunately, our great and loving (ahem... jackass... cough) librarian decided that in order to leave every student had to be sitting up straight with their hands in their laps. Well, if it was a minute or less until the bell, I would be unreachable, and she would spend the entire minute drawing attention to me because I could not sit up and put my hands in my lap. Holding my ears and/or looking at my watch was apparently not acceptable, so she would often wait me out until the bell rang. A couple of times I managed to comply, and sit as she asked, but I could only last a few seconds. When she did not immediately dismiss the class, I lost trust in her words and simply resigned to hiding my ears for the final 30 seconds or so on the days when we stayed late.

I never really conquered that fear, because while I easily learned how to predict the bell, I could not prevent the sensory overload that the bell created. Thus, all the predictability did was narrow my time of shutdown into 30-60 second intervals, rather than the entire time I was at school.

SO WHAT CAN BE DONE?

Know your child. It sounds simple, but a person who has sensory issues can not control them. He can't make a particular thing not bother him. He can, however, learn to manage his environment in a way that minimizes his contact with these stressors. You can help by not being offended when he doesn't want pepper or cinnamon in his food, or can't stand your air freshener, perfume, or cigarette smoke. Don't yell at him if it frightens him. Roll the windows up if there's a train coming. Minimize the things that can be minimized, that way the child only has to deal with the things that are out of your hands. The more time he has at peace, away from overload, the more of a buffer he will have when stressful stimuli do come along. You will have more time to alleviate the problem before he breaks into meltdown if this latest problem is not the figurative "final straw" in a series that, maybe unbeknownst to you, has lasted all day.

The more you become familiar with an individual with sensory issues, and the more you understand what sensory overload does to him, the easier it will be for you to prevent meltdowns and unresponsiveness. Again, if you can eliminate problems that you know about and can control, it will leave you and your loved one a lot more room to learn how to deal with the problems that can't be controlled.

Chapter 10

AUTISM MYTHS UNDER THE MICROSCOPE: DO YOU BELIEVE EVERYTHING YOU HEAR?

Myth #1: "Autistic people/kids don't like to be touched, held, or hugged."
This is my favorite myth of all, so I'll hit it first.

The touch issue, to a large degree, is one of those things that is actually independent of autism. Some people like touching more than others. And that transcends all neurological conditions. However, because of the sensory issues and predictability requirements associated with autism, sometimes it can appear that an autistic child dislikes being hugged or held simply because they resist it on the first try.

So why then, would an autistic child resist physical contact when he actually wants or enjoys it?

Well, it goes back to keeping one's bearings and having all sensory inputs in order. Most adults, particularly parents, aunts, uncles, etc., will run up and hug their son/daughter, neice/nephew, grandson/granddaughter, etc. as soon as they see the child, often uttering loud, obnoxious (but loving) gibberish in the process. Unless the child is completely familiar with this response by that particular person, and has been adequately warned that he is about to encounter this person, this sudden rush of sensory input is going to scare the crap out of him because he didn't see it coming. The child may love aunt Bessie to pieces, and would happily curl up in her lap if she asks him to, but when she suddenly runs up on him talking baby talk and snatching him up to hug him, he will wince out of reflex, not because he doesn't love her and doesn't want to hug her, but because he has not had a chance to prepare for these new visual, physical, and auditory sensations. I often winced or pulled back when my grandmother, who I loved dearly, would come out of nowhere and hug me, but if my mom told me that we were about to see "meemaw" and that she'll want to hug my neck, then I was happy to jump into her arms as soon as I saw her. My mom was terrible about randomly tickling me, poking me playfully, patting me, etc. and I would always flinch every time. She always said she didn't understand why I didn't like to be touched, but she never realized that a poke, pat, or tickle is actually sensory input, and if I have not already factored it into my list of expected things to feel, the sudden touch will be unwelcome, regardless of how I feel about the person making the contact.

As a teenager and young adult, I have been looked up to by my younger cousins, as well as pretty much all other children I encounter, and they often want to hug me or play with me when they see me, which I have no problem with. But if you ever pay attention, you'll notice that I welcome the hugging, carrying, etc. only when I am expecting it. On the other hand, my favorite kid that I was just carrying around a few minutes ago can unexpectedly come up behind me and grab me or jump on me, and I will flinch and jump away as though the kid disgusted me or something. Once I realize it's him/her I will apologize and usually go ahead and hug them or whatever to let them know it's OK, because it wasn't the kid or the actual contact that upset me, but rather the unexpected sensory input that I had not yet prepared myself for.

In addition to that, there's also the issue of whether or not the message I send by engaging in physical contact is the same as what other people will interpret. In other words, if I feel sure that everyone witnessing this hug will interpret it the same way that I do, then I'm OK with it and I will hug back, but if I'm afraid I will be misinterpreted and "painted" incorrectly, I will shy away. For example, if my cousins are visiting and give me a hug in order to greet me, I pretty much know that everyone sees this hug as a greeting and nothing more. Thus I have no reservations about hugging back. On the other hand, if my brother's girlfriend goes to hug me as a greeting, I'm going to be fuzzy on exactly how everyone will look at it. In this case I may allow her to hug me, but I will clearly not hug back in order to make it obvious that she is doing the hugging and not me. By remaining lifeless I leave nothing to talk about on my part, and it leaves me without the anxiety of wondering what everyone's opinion is. Also, by not comletely shying away I avoid creating a scene. It is neither a reflection of my friendship toward her in any way, nor a lack of desire for physical contact, but rather it is a defense mechanism designed to protect me from anxiety caused by needing to evaluate other people's feelings, which I am unable to read.

In conclusion, the odds of having an autistic person who truly does not like physical contact is going to be roughly the same as finding an NT person who does not like to be touched. It's just that the circumstances and stipulations regarding when touching is allowed are going to be entirely different when dealing with an autistic person. And understandably, people who are not used to dealing with autistics will not know how to interpret and recognize these alternate rules, thus creating the misconception that physical contact is a no-no.

So with regard to that, I would have to say that this myth is about 99% FALSE. There's no absolute certainty in my mind that there isn't that one child out there whose autism causes every bodily touch to result in sensory overload, but for the most part, we like human contact as long as it is kept within our realm of understanding.

Myth #2: Autistic kids show no empathy and are incapable of love.
This interpretation is inspired, once again, by the fact that autistics go by a different set of rules when it comes to expressing themselves. I have worked with over a dozen autistic children, and every single one of them has shown affection toward either me, another adult, or another child. However, they have a funny way of expressing it sometimes. A lot of times they may show you affection by telling you about something that interests them, or showing you what they are building, or something like that. From the autistic perspective, I don't need you in my world unless I want to open up to you, so the only way I'm going to tell you something or show you something from my world is if I wish to give you a chance.

When we are perseverating or stimming (which can encompass a great deal of our time -- especially when young), we are often oblivious to what is going on around us. When strangers are around, anxiety (which brings about stimming) increases because there is a need for processing of surroundings, so from the stranger's perspective, the child is emotionless and distant. Also, many autistic children are afraid of strangers because they have not yet determined how certain strangers fit into their world. In this case the child may clam up or even melt down when these people are nearby, simply because they feel pressured to respond and are not ready to do so yet. On the other hand, some autistic children are very affectionate and will run up and hug anyone, which can be a concern among their parents on account of the "stranger-danger" factor.

As long as they are in their comfort zone, autistic children can be very affectionate and will often get very upset if they realize someone or something they love has been hurt. They will sometimes show compassion for inanimate objects as well, feeling sorry for the object should it get broken or thrown away. They commonly want to cuddle with their trusted people (mom, dad, grandma, etc.) and these people are usually well aware that they are loved by their child. Again, though, we have to be in our comfort zone in order for our true feelings to show, so the casual observer may not recognize them at a glance.

So this myth, even more so than the last one, is absolutely FALSE. Not only are we capable of love, but it is absolutely necessary that we feel loved as well.

Myth #3: "Autistic kids are in their own bubble and are not aware of the world around them."
My grandmother once said of me "He doesn't live in our world. We have to step into his world if we want to be with him."

To understand this, one must look at it from a biological standpoint. All creatures, humans included, are designed to respond to their environment via a system of stimulus and response. Without a social system in place, the natural order of things is to cue directly off of the environment and fend for oneself independently of other members of the species.

Society has created a slightly different version of this in most humans, though, in that they tend to cue off of one another rather than off of the environment itself. Think about it: do you respond to the current events of the nation because you experienced them? No. You respond according to what you heard on the news or according to what you heard from your friend at work. Do you wear high heels or dress shoes because they're comfortable? Hell no -- you wear them because they are the accepted form of apparel in the workplace. You're much more concerned about the impact your apparel choice will have on your career or social status than you are on the biological needs of your feet. Thus the way of the NT is actually the odd way of stimulus and response. However, to the average joe this does not appear to be the case for two reasons: 1) Cueing off of other humans rather than the environment gives a sense of "everybody doing this, so it must be natural" and 2) NTs are the far more common variety of person (hence the term NeuroTypical) so it compounds the illusion even further. Social behavior is a learned behavior, not a natural one. Think about it. Babies have to be socialized. And the race and culture that the baby is born into, and subsequently socialized into determines how he will behave as he matures. So in a sense, the natural behaviors are suppressed to make way for social ones.

So not surprisingly, people who are socially impaired will retain these natural stimulus/response behaviors for longer than a person who is NT. They must rely on environmental, or biological cues because they don't have the schematics to draw all of the information they need simply from watching and listening to the people around them. Because of this they become isolated and must often self soothe as well as self stimulate because other people do not connect with them in ways that meet this need. However, all the while they want to be accepted and want to do right in the eyes of those they love. This requires that they actually create two worlds: an internal, self-controlled world, in which they can escape sensory overload and find peace, and then the NT world, which they must enter in order to gain human contact.

The more the person can learn about the NT world, the more often he can enter it, and for longer periods of time. Thus the higher functioning the child/person, the more effective he will be at stepping into the NT world at the opportune times. But no matter how high functioning an autistic person is, he will always have to periodically withdraw into his own world in order to regroup and dispel any excess sensory input. It is a necessary function for keeping the autistic mind from overloading and short-circuiting.

This myth, in my opinion, is TRUE -- however, it is only PARTIALLY true. We do have our own worlds, but we can, to varying degrees, step in and out of the world of the NT. It just doesn't always happen the way NTs want it to, and when it doesn't, they just assume we can't do it at all.

Myth #4: "Autistic people are mentally retarded."
Boy, old thinking dies hard, doesn't it? Mental retardation requires an IQ of less than 70, which would put you in about the bottom 10% of the population. I am autistic and my last IQ score was 138, which is in the top 1% of the population. Now, either I am an exceptional anomaly or maybe the old school of thinking should be re-thought.

In reality, IQ among autistics is spectral, just as it is with NTs. However, there is a complexity here that can make things a bit misleading if you are not aware of it.

During my short stint in the capacity of working with special needs children, I noticed that some of the autistic preschoolers I worked with had a normal vocabulary level or better, and could tell colors and shapes better than some of their NT classmates. They also performed better on reasoning tests than some of their NT classmates. On the other hand, I had a number of other autistic preschoolers who were very distant and were way behind in all cognitive areas. And there were a few that fell in between the really high ones and the really low ones. So even in a sample size as small as 12 to 15 I saw a spectrum-like distribution as far as cognitive ability is concerned. This same type distribution is seen in NT cognitive ability.

That being said, it is not uncommon at all for autistic children to do poorly on standardized testing. Thus, many are diagnosed MR solely based on the results of these tests. This is not necessarily a bad thing in that it makes way for many types of aid and assistance, but it can often be a tough pill for a loving parent to swallow. Thus, it might be helpful to take a look at why those with autism have a tendency to show delays in the IQ testing department.

Let's take a look at the standardized test itself -- most of them are actually designed for NT children, or at the very least to evaluate how well a child will fare in mainstream society. Thus there are many language and interpersonal skills that come into play both on and off the paper that can make it hard for a child with autism to focus. This can range from the way the questions on the test are presented to the way the test itself is presented to something as off the wall as the color, temperature, location, etc. of the testing area or even whether or not the child is comfortable with the person administering the test. Any of these sensory distractions (among a host of possible others) can and will confuse and disrupt a child who has sensory issues, since most young children (even NT) are not mature enough to be able to persevere through discomfort. Since autistic children are more likely to be affected by these sensory problems, they are more likely to become distracted and thus more likely to do poorly on the test.

So what we're seeing here is not necessarily a lack of intelligence, but rather an inability to apply that intelligence in a manner that conforms to the testing format.

Another thing to keep in mind is that many times kids who are on the higher functioning end of the spectrum remain undiagnosed for much longer than children who show severe delays. Thus the statistics are biased in that they only include kids with a PDD or ASD diagnosis while the scores of undiagnosed, higher-functioning autistics are lumped in with the NTs, resulting in the majority of the "official" ASD scores being in the MR range.

Although there are many autistic children who do indeed (all technicalities aside) suffer from mental retardation, there are also many non-autistic children who do as well. And there are certainly many autistic children whose cognitive ability (if not standard IQ) falls in the normal range with still others who score well above average.

Because autism is a spectrum disorder and includes many levels of cognitive ability, I will have to say that this myth is essentially FALSE. However, there is no denying that almost all autistic children, regardless of intelligence level, will have deficiencies when it comes to performing satisfactorily in a mainstream environment.

Myth #5: You can understand autism by watching Rain Man.
This one is more of a stereotype than a myth, but it seems common so I'll address it. While this one tends to infuriate parents who have a child on the spectrum, this one is usually just a natural and innocent (albeit naive) attempt by someone who has no familiarity with autism to gain enough familiarity to avoid feeling awkward.

The truth of the matter goes back to the fact that autism is a spectrum disorder, and all individuals are affected differently. Granted, there are some universal aspects of the condition (stimming, meltdowns, etc.) and most autistics will be able to admit to having a "Rain Man" moment here and there. However, anyone who has dealt with a large number of autistic children/people will tell you that every person is an individual and reacts differently to different things. They also have strengths and weaknesses in different areas. In fact, they (or should I say "we") are as diverse as NTs are as far as interests, strengths, and cognitive abilities. That means that the odds of an autistic person being just like Ray in Rain Man are about the same as an NT person being just like Ray's brother Charlie. That being said, there are a few things about the movie that do ring very true, as long as they are taken with a figurative grain of salt and not just indiscriminately stamped onto someone simply because they have the condition.

So given the degree of truth and realism seen in the movie versus the individuality of people on the spectrum, I will say that this myth is about 70% FALSE/30% TRUE, and thus not entirely unfounded.

Myth #6: Autistic people are intolerant of change and require a fixed routine in order to function."
This belief seems to stem from the tendency of autistic children to break into meltdown when suddenly given a command or made to do something other than what they are doing. It is also fueled in part by the movie Rain Man, with Ray's rigid adherence to daily activities, not to mention the doctor's affirmation that Ray required this.

This one depends greatly on the person's functioning level as well as the way schedule changes are made. As mentioned in the chapter about meltdowns (See Chapter 7 for more on this), it is necessary for our minds to process our environments and be able to predict how we will be affected. Often what triggers a meltdown is a necessity to respond before this processing period is complete. The duration and method of processing varies not only by level of functionality, but also by personality and disposition. But the bottom line is that if you do not allow the person to regain his bearings before you expect compliance, he will become disoriented and frightened, and you are probably in for some sort of meltdown. If you have a verbal individual, your chances of changing the plans are much better than if you have a nonverbal individual, but even so, processing and internalization must be allowed for.

The true/false status on this one will be iffy, because it is mostly true that sudden change is intolerable. However, changes in schedule or plans are certainly doable as long as sufficient preparation is given and allowed for. The amount of preparation necessary will vary on a case-to-case basis, and with some individuals it will vary on a day-to-day basis.

So while I'm going to give this myth a shaky rating of about 60% TRUE, remember that you are dealing with individuals, and what fails with one may work with another.

Myth #7: Autistic people take everything literally and are not able to interpret humor or sarcasm.
The viability of this stereotype depends heavily on an individual's comprehension of vocabulary as well as their ability to use their limited perception of interpersonal interaction. A lot of times, individuals on the spectrum will find humor, but use it at inopportune times. Using it appropriately requires an extensive vocabulary as well as a large mental database of scripts. I began to learn how to use humor in high school, and I was near the end of college before I could do it with any effectiveness. I developed a dry and sometimes insensitive sense of humor, and learned how to incorporate my scientific knowledge into it. Even so, I often find it difficult to inject the right quip at the right time.

The biggest challenge is being able to transform concrete thinking into the abstract and suggestive ideas that are necessary to create humor. I have had a lot of success in intentionally making people laugh (unintentional does not count), but even in my case it has to be a joke that has a logical basis. There is a limit to how abstract I can go, and by the same token, there is a limit to how abstract any autistic individual can go. It takes a lot of practice and a lot of studying other people. It is necessary to study not only what makes people laugh, but why it makes people laugh as well. Thus far I have yet to meet another autistic individual in person that can use verbal humor as well as I can (and I'm no comedian), which makes sense because I am considered very high on the spectrum. I have seen a handful of ASD invdividuals online, however, that had very decent senses of humor. Most of these individuals are on the high (Asperger's) end of the spectrum as well.

With that being established, I would have to say that this myth is mostly TRUE, although there are some notable exceptions. Humor requires an extensive knowledge of the whims and inner thinking processes of one's peers, and this is usually a very difficult hurdle for most people on the spectrum.

CLOSING

This information is given from first hand experience. I have written it out in hope that people can better see things from my perspective, and be less apt to misunderstand the things they see. Since many of these things are also exhibited by other people on the spectrum, it is possible that this work can offer a better look into a condition that is still considered mysterious. How this information is used is solely the decision of the reader, but it is my hope that it can be used to improve the way people view autism spectrum disorders, as well as the way they view the individuals affected by them.

Remember that children affected by this condition will remain affected into adulthood. I ran into the expectation in the workplace that all of the problems were to miraculously disappear once adulthood is reached, but this is simply not the case. Thus it must be stressed that even high functioning individuals may exhibit difficulties with behaving in an adult manner when their age demands it because the way in which they perceive their environment does not change. The only things that change are the expectations placed upon them as they grow older. The degree to which an autistic individual can notice, cope with, and adapt to these changes is highly variable but almost always delayed in comparison to that of NT individuals.

Also remember that there are many personality quirks that are independent of autism. Often, what has to be determined is not which personality traits can be blamed on autism, but rather how the autism affects a person's personality traits. Answering this question will often help to unlock why a person is affected in a particular way by a particular stimulus.

The more awareness, patience and understanding that can be offered with regard to autism spectrum disorders, the easier it will be for affected individuals to mesh with the rest of the world. It's my belief that we don't have to remain isolated in our figurative bubbles. Hopefully if more people are able to recognize our perspectives and accept them, they will be less likely to show aversion to us simply because they don't understand.