Autism & Expiration Dates

I remember being told by an ex-girlfriend way back in the days of high school, “Leave me alone, and don’t talk to me anymore.” Several years have passed now, but I’ve run into her on very rare occasions. Each time, I’ve had difficulty engaging her in conversation – not due to any ill feeling or bitterness but rather because of that long-standing order of “don’t talk to me anymore.” Even half a lifetime later, that imperative statement lingers in my psyche, and while I have a rational understanding that her statement is no longer binding, the part of my brain that latches on to it overrides said rationality.

How does this apply to our working with autistic children? Well, how many times have we caught ourselves saying something like…

• …I don’t want to tell you again to follow directions?
• …I don’t want to hear about dinosaurs anymore?
• …Never sharpen your pencil without my permission?

All of these statements have weight in very specific time frames and contexts. Unfortunately, our autistic child may be unable to make the distinction, and you may find yourself dealing with a meltdown during a later project about dinosaurs or the next time you give any directions. The child may end up doing no work when you have a sub because he or she cannot ask you to sharpen a pencil if it breaks.

An autistic individual can potentially be extremely literal and will apply statements made by teachers, caregivers, and parents in every context. When teaching children with autism, we need to be conscious of how we say what we do and how that child might apply our casual comments.

Autism, Solitude, & Blogging

About a year ago, I wrote this about autism and loneliness:

No matter how many people I am around, I am still very much alone.

Autism and Asperger Syndrome can be very lonely conditions. There are few points when an individual dealing with these labels will feel truly comfortable interacting with peers and acquaintances. Even when social interaction occurs, a level of detachment exists that impedes the communication between the autistic individual and the neurotypical individual. Parents and teachers are constantly looking for ways to help their autistic child branch out better and feel more comfortable in social situations – from peer buddies, to journals, to visual cues, and many other strategies.

One strategy that has made a huge impact with me is blogging. What you are reading right now is the single most comfortable form of social interaction I could possible have with you. I express and communicate things through my blog I might have difficulty with face-to-face (or face-to-shoes as the case may be). Blogging has helped my social development, plain and simple, and this improvement has been slowly filtering into other social situations.

Before you dismiss this intervention, consider this. If you have an aspie or a high-functioning autistic individual in your life, how much does he like to write? Chances are, the answer is, “a lot.” Blogging is a great outlet for writing. Whether it’s poems, short stories, nonfiction, daily journals, or something else entirely, you can put it on a blog. Suddenly, the writing is no longer in a private notebook. It’s on the web for anyone to see!

Privacy can be a concern here. MySpace has especially received its share of bad press when it comes to individuals stalking our children. Here’s the thing: it doesn’t have to be MySpace. Blogger, TypePad, WordPress, and LiveJournal are all examples of MySpace alternatives. Also, as the adult, you should set up the account under a username that tells nothing of the child’s identity. You can control what information is included in the “About Me” section, and you can decide whether or not other people can make comments on the site. Blogging can be a very safe way of communicating with the world. Much of the stigma comes from the many people who use blogging irresponsibly.

During the life of this blog, I have posted numerous entries on presenting. I’ve reviewed an office suite and an operating system. I’ve discussed internet ethics, game ratings, the recording industry, and, of course, my experiences with Asperger Syndrome. What might your child accomplish? What voice might he or she discover that lay repressed in other settings? Give this a try. Set up a safe blog for your child. Give it some time, and see what kind of product is produced. You might even learn some new things about your own child.

The Sense of “Right”

An autistic individual is “never wrong.” There is a sense of rightness many autistic individuals have (especially on the high-functioning end of the spectrum) that can be difficult to shake once it sets in. If your autistic child is convinced they are right about something – no matter how wrong they might be in reality – he or she is not likely to peacefully accept contradiction.

In these situations, argument will achieve nothing. Your child will eventually walk away frustrated, and you will as well. You won’t convince the child they are in error no matter how vehemently you try. The child will respond in equal vehemence, so what to do? Do you allow the error to persist to avoid conflict?

Not long ago, one of my little friends in fourth grade was frustratedly “correcting” some pictures of spiders on his class’ dry erase board. The spiders had eight legs, and he had it in his head that the spiders should have six legs. When a peer told him that the spiders were supposed to have eight legs, our autistic friend became loudly argumentative about the topic. Instead of joining the argument on the side of the correct child, the teacher merely disingaged the conflict and left the altered spiders alone.

Later, the teacher just casually brought up spiders again, and the subject of legs came up. A student answered that spiders have eight legs, and the teacher praised the student for the answer. Immediately, our autistic friend hurried over to the board and added two legs to the spiders he had earlier removed those same legs from. Separated from the situation of being confronted and challenged for his thinking, the child was able to recognize and correct his mistake.

If you have an autistic child who becomes stubborn about an untrue fact, immediate contradiction will not correct the mistake. Even if you show the child concrete evidence that proves the point, you have still accomplished nothing. All you’ve done is create a frustrating situation that serves to alienate your child from yourself. Instead, fight the temptation to argue. Disengage, and allow time for the child to cool down. Then, subtly guide him or her into discovering the error. More often than not, the child will accept being wrong if he feels he has discovered it himself. Remember, we adults have to be more capable of being calm and in control than our students may be capable of having problems. Let’s not allow ourselves to be drawn into arguments that get nowhere.

“I [Sense] Everything”

In Mark Haddon’s book The Curious Incident of the Dog in the Night-time, Christopher simply states, “I see everything.” In this, he encapsulates the problem many autistic individuals have filtering the information around them.

In some cases, higher-functioning autism is misdiagnosed as ADHD – and for good reason. With both cases, you have what appears to be a general lack of focus in highly stimulating environments, but the root causes are different. With ADHD, the brain has difficulties focusing in on any one stimulus at a time and begins cycling through various points of attention in the environment – both external and internal. With autism, the brain has problems prioritizing stimuli, and it tries to simultaneously process too much information, resulting in a jumble of inputs.

Every autistic child will likely have one sense that is more prone to this than others. Sight and hearing are the most common. In any setting where there is a lot of aural or visual stimulation, it is a good idea to begin monitoring any children you have with autism. If the brain becomes overwhelmed in its attempts to simultaneously process everything, the child may go into a social seizure. If you see signs that a meltdown is imminent, it’s a good time to utilize any safe spot you have determined for that child.

Too many inputs can create a state of confusion within the mind of an autistic individual. I had one student once tell me, “I don’t like it when everyone talks at once. It stops making sense.” It may be difficult, but if you have an autistic student or child, be aware of the amount of information that may be flooding the child’s senses, and look for ways to regulate that stimulation when possible.

Autism & Escape

At home or in the classroom, an autistic individual needs a place of escape – someplace that feels safe and secluded when social seizures or meltdowns occur. One of the harder things for parents and teachers to accept is that an autistic social seizure is not a choice. This is not a case of throwing a temper tantrum because the child is upset. A meltdown is far deeper than that.

I’ve heard social seizures compared to a psychological Control + Alt + Delete, but, in some cases, it may be more appropriate to describe them as hard reboots. Many factors can lead to this reboot, and it is seldom one specific trigger that leads to the meltdown. A variety of stimuli begin to create conflicting processes in the brain, and they become impossible to sort out, prioritize, and deal with. The result is a social seizure.

When (not “if”) these occur, it is important that the autistic individual be able to remove him- or herself from the immediate environment and escape to a safe place. If not provided, the child will often create a safe place, such as a corner, under a desk, or in between bookcases – someplace where external inputs can be limited and monitored. By selecting a safe place ahead of time, you create a predictable structure to follow that benefits both you, the child, and other students in the class.

While the student is in his/her safe place, it is also important not to force them out too early. Just like you can’t go printing a thesis the moment you reboot a computer, it will take time for the child’s brain to return to its normal functioning level. Once back, the autistic individual may be able to carry on as if nothing happened at all. Break the process too early, and a more severe meltdown or outburst may be the result.

Even among the most high-functioning autistic individuals, social seizures are a fact of life. They may grow more rare with time or medication (in more severe situations), but, regardless of how intelligent or rationale an autistic child may be, caregivers and teachers need to have a plan in place when that rationality breaks down. A basic step in that plan is a place of escape when meltdowns occur. Create a safe haven for the child where he or she can recuperate, and you will save yourself and the child a great deal of grief.

Asperger & Eye Contact

Look at me when I’m talking.

How many times do we say that when trying to communicate with a child – even if we know full and well this request poses a serious challenge for that individual? Even I catch myself doing this, and I should know better.

When speaking with an individual with a PDD such as Asperger Syndrome, don’t demand eye contact. While seeing the eyes may make us feel we are being listened to, the fact is, the other person is concentrating so hard on maintaining eye contact that he/she may be having difficulties retaining what you are saying.

In my experience (on both ends of this challenge), I’ve found that I can allow the child’s eyes to wander freely, but maintain a close proximity. Asking the child to re-explain what you are saying can help confirm understanding. Do this every couple of sentences. Finally, Kneel down to his/her level. The child will have an easier time making occasional eye contact if you do this.

In addition to these tips, over time, guide the child in trying to look at a part of a speaker’s face close to the eyes – the bridge of the nose, for example. Most people really can’t tell a lack of eye contact if it is “close enough.” This helps the individual fit in better at social settings without doing too much damage to those social boundaries unique to autism.

Remember, eye contact, or lack thereof, is not necessarily an indicator of attention. When it comes to PDDs, demanding eye contact may damage comprehension, so look for other ways to confirm and reaffirm attentiveness that don’t involve breaching social comfort levels. However, every autistic individual is unique. My suggestions work for me, but they will not work for every individual. Persistence and patience will eventually lead to better communication as you grow to better understand your autistic friend.

What Did You Mean?

One of the more interesting aspects of working with Asperger Syndrome is that some of the qualities are very childlike in nature. In other words, you would almost expect any child to posses that given quality, but the aspie child will not necessarily “grow-out” of that quality as he/she reaches adulthood.

One such quality is that of literalness. Most individuals with Asperger Syndrome (and other forms of autism spectrum disorder for that matter) have a difficult time translating idioms, figures of speech, and sarcasm into the intended meaning. Furthermore, differentiating a rhetorical question or statement from a purposeful question or statement can pose a problem.

Three Examples

• A mother is printing out an important document and runs out of printer paper. She calls to her son: “Can you run to the store and buy some more printer paper?” Forty-five minutes later, her son rather sweaty, the mother is handed a new ream of printer paper. What happened? The child jogged to the store, bought the paper, and jogged back – exactly as he was asked to do.
• A girl drops a bowl on the floor, and it breaks. Mom throws her arms up in the air and yells, “Well that’s just great!” when she sees the mess. Hearing this, the girl proceeds to throw another bowl on the floor. What did the girl hear? “That’s just great!” Now you could probably read voice inflection into that statement, but the autistic individual may not be able to translate voice inflection in a meaningful way. Read the example again, and try to remove any inflection from your inner voice. Can you understand why the girl threw another bowl on the floor?
• On a test, a boy reads the question: “Can you explain the theme of this book?” The student honestly writes, “No,” in the provided space and proceeds to the next question. Later, he is shocked to see that answer marked as wrong.

Again, look at the wording of the question. “Can you explain…” The student answered the question, but he honestly misunderstood the meaning of that question. Now, if I said each of these examples were 6-8 year-olds, you would shrug your shoulders and say something like, “Kids do the silliest things.” However, what if these are all teenagers? Well, the first one is just dumb, I guess, and the other two may be mistaken as serious attitude problems.

A Simple Matter of Mistranslation

A child with Asperger Syndrome will be very intelligent in many areas, so much so that we adults who interact with them may forget those areas where they are still developing. They are not being smart-aleks when they fire off an answer to a rhetorical question. No attitude is intended when an unexpected answer is given to a request. It is just a simple mistranslation. You said one thing, the meaning clear in your head, but the receiver heard exactly what you said and took every syllable literally.

Examples like numbers two and three still throw me off occasionally to this day. I answer rhetorical questions all the time, and I (admittedly) have no clue how to pitch my voice to correctly use figures of speech, sarcasm, or rhetorical questions in my everyday conversations. In fact, I’ve given up on rhetorical questions so entirely, I couldn’t even come up with an example of one in the above illustrations!

These language devices are very common in everyday speech – so much so that it would be a difficult conscious effort for many to avoid using one or all of them for an entire day, but don’t assume that everyone who hears you understands your meaning. You may have listeners who only understand exactly what you say.

Me & My Buddy Asperger

April is Autism Awareness Month, so I thought it was about time I had a coming out of the closet (no – not that closet!) party for myself. Simply put, I have Asperger Syndrome, a pervasive developmental disorder closely associated with autism. To some of my peers and colleagues, this may come as a surprise. Others may have seen it from a mile away (as one told me when we were talking about this a couple of weeks ago). For most of my adult life, I have tried to hide behind a facade of being neurotypical, but I have finally come to terms with this enough to openly talk about it.

My History As An Aspie

The term Asperger Syndrome was not coined until 1981 (despite initial research being conducted nearly 40 years prior), and the diagnosis was added to the DSM IV in 1994. As a result, I was a freshman in high school before there was a category for my behaviors and social difficulties. During elementary school (in the 80s), you really fell into one of three categories: hyperactive, retarded, or “get over it.” Autism at the time was considered a form of mental retardation, and you had to be pretty low-functioning to be labeled as autistic.

Since then, more study has been conducted on the broad spectrum of autism and related conditions – referred to as pervasive developmental disorders (PDDs). Unfortunately, this work was of no benefit to me as I struggled emotionally with the difficulties of my condition; I was the weird kid, a target for bullies, and a loner. I found more solace in my collections than in other humans. Mind you, this is not meant to create a heart-wrenching drama. I’m just putting things in perspective.

I became what seemed to be a very self-absorbed adolescent, which is a common perception of many individuals with AS. Friendships were rocky and short-lived. I absolutely could not handle rejection of any form, and I was slumping into deeper and deeper depression as I entered high school. I was a complete and total mess. I would even make up elaborate lies about my health or some other aspect of my life in order to create some kind of connection (even if it was a fraudulent one) with my peers.

Then something happened. My sophomore year in high school, I began emulating behaviors of individuals I felt were socially successful. Over time, individuals like Ben L. & Kevin S. at church became social role models (though they were unaware of their status), and I learned my facade – a facade I still implement to this day when I am in social situations. Internally, I was still a wreck, but I could talk a good talk, and that made school easier. My last three years at high school were great, and I even met my wife during this time period!

Interestingly enough, it was Crystal who, while majoring in psychology in college, first brought up autism as a possible explanation for my bizarre private behaviors – rocking ceaselessly, finger biting, repeating phrases, seemingly unpredictable outbursts, aversion to spontaneity. However, I had not experienced a language delay (one of autism’s defining characteristics), nor did I seem to experience the physical seizures that sometimes accompany the condition. In contrast, my linguistic abilities as a child were quite pronounced, and I often read books far above my grade level.

I had been teaching for a year when I met a child who could have been my clone. Physically, emotionally, and socially, this child was me all over. He was a fifth grader, and his teacher (the talented and lovely Ms. Hill) was convinced he was autistic. His fourth grade teacher (the equally talented but not-quite-as-lovely Mr. Hall) shared the same suspicions. However, his parents were extremely reluctant to concede to testing. Ms. Hill did not want this child to enter middle school without the proper services in place, so she was persistent.

At the time, I was mentoring this child, and I was making as many discoveries about myself as I was helping this child. If he was autistic, surely I had to be. We had a very good bond, and his parents were quite fond of my involvement with their son. Consequently, in mid-Spring, I sat down with his mom and dad and spelled out the fact that there was a good chance that I’m autistic. Their son was a carbon clone of my former self, and they would be doing him a disservice by not having him tested. They agreed.

When the test results came back, autism was not the label. Asperger Syndrome was, and, at last, I had my diagnosis. AS fit me like a glove, but I remained very private about it, confiding only in a handful of associates. I even kept my direct supervisor out of the loop until March of this year (and I’ve been employed in the same place for five years now). You see, I was grateful to finally have a clear picture of myself, but I’ve been terrified of how others would react.

Behaviors & Workarounds

Many behaviors associated with Asperger Syndrome permeate my life, and, at home, these behaviors can be very pronounced. However, in public, I can usually temper them enough to avoid looking too strange.

• Talking to Myself. Let me set the record straight: I’m not actually talking to myself. I’m holding a hypothetical conversation with someone who’s not there. For example, if I’m thinking through a problem regarding helping a child read, I may pretend I’m talking to one of our literacy coaches, and I try to verbalize how I think she would answer my questions or constructively criticize my ideas. Most of the time, I can avoid doing this when people are around.
• Self Stimulation. “Stimming,” Stereotyped behaviors, what ever you want to call them – I can avoid most in public except for the rocking. I usually just pretend I’m cold – which I often am anyway, but it has nothing to do with the rocking.
• Echolalia. This has always been sporadic. I’m much more likely to repeat myself than I am to repeat you. If I do repeat you, I’ve learned to turn the voice inflection to sound inquisitive. It’s like the old joke about psychiatry: turn the last word of your patient’s last sentence into a question, and you sound interested.
• Eye Contact. I’m looking at the bridge of your nose or your eyebrows. Most people can’t tell the difference.
• Literalness. I still have struggles with this. I answer rhetorical questions. I take sarcasm seriously (though I understand how to use it thanks to Peanuts). I’m pretty good at noticing idioms and figures of speech when they are used, but that doesn’t mean I necessarily know what they mean. My wife finds endless amusement in this fact, and my reaction to the first time I heard the phrase “Quit Cold Turkey” is a running joke around our house.
• Emotional Vacancy. I can emulate the proper voice inflections and facial expressions for most emotions. Empathy is still a major challenge to demonstrate. It does get on my nerves when the term “emotionless” (or something similar) is used to describe AS. We experience the very same emotions you do. We just express them differently, and we have as hard of a time reading your emotions as you do ours. It’s not a lack of emotion; it’s a lack of nonverbal communication interpretation.
• Meltdowns. I prefer the term “social seizure” because that is exactly what these feel like. I can usually defer these when others are around. In other words, I can put it off until later. Usually, I become very quiet when a social seizure is about to hit, and I may seem completely non-responsive for a moment. Then, I’ll pop back to being engaged. I haven’t avoided the meltdown. It’s merely waiting in the sidelines until I’m alone. Noise is a huge trigger for me, and I’ve been accused by colleagues of going too easy on my classes when they become rowdy. The truth is that I am trying so hard not to inappropriately overreact that my behavior swings to the polar opposite. This is actually a huge area of challenge for me working in an elementary school, and it is the sole reason I seldom accomplish much during my prep periods.

I could really go on ad nauseam here. Really, an individual with Asperger Syndrome may have deficient coping skills, but his self-help skills are in tact. Once I figure out that a certain behavior of mine may seem odd to peers, I can usually find a way to mask it. Please understand, though, that this does not mean I have eliminated the behavior – I can only keep my act up for so long. Sometimes I do social seizure in public. Sometimes I do stare at the floor while talking to others. Sometimes I do pick at my face or chew my fingers in public. My seemingly outgoing and personable facade is just that: a cover. It is an act that takes concentration and energy to maintain. Some days are easier than others.

The Trade Off

Do I view my condition as a disability? Yes and no. Socially, Asperger Syndrome has leveled a heavy price in my life. I have few close friends. Many of my peers view me as eccentric or strange, and I do not fit in well during social events. I have a hard time engaging others in conversation, and I am much more likely to eat at a table by myself than I am to approach others or be invited by others. I come of as a trifle self-centered because I will try to steer conversation to topics I am interested in – topics many others find dull or tedious. No matter how many people I am around, I am still very much alone.

On the other hand, I am very smart. However, I do have a hard time broadly applying acquired skills and knowledge. I was reading Beverly Cleary & Judy Blume at six and Tom Clancy & J.R.R. Tolkien by the time I was twelve. In middle school, high school, and college, I would test very high in math, even when being tested on material for which I had never received formal instruction. I just “get” computers. One could say I like computers more than most people (by which I mean, I like most computers more than I like most people). I hold my own when watching Jeopardy, and I’m better at Double Jeopardy than the first round; Old Testament names give me very few problems; I am a Scrabble freak.

In other words, Asperger Syndrome is really a trade off. My IQ hovers around 130-140. On the other hand, my unaltered EQ is probably <80. (I say “unaltered” because I am quite capable of acting like an individual with a much higher EQ for a few hours at a time.) What I’ve lost in one area of my development I’ve made up for in the other.

The End

So there you have it. I’m outed, as the saying goes. Hopefully this entry helps you understand me a little better, and I will continually try to find ways to improve my methods of handling my condition. I have no desire for a cure (if such a thing is even possible – a discussion for another post), and medication of any kind is very aversive to me. AS is part of who I am and part of my individuality – something I do not want stolen from me. Asperger is my buddy, and, now that we’re all acquainted, I hope we can get along.

Weird Call

So I got this weird phone call a couple of night’s ago. I was cleaning at the time – more accurately, I was fixating on some unusual spots on our kitchen floor – so the call caught me off guard. Slightly shaken, I picked up the phone with the usual, “Hello?”

“Hi, David. It’s [some name I don’t remember]. Blah, blah, blah…”

“Um, I think you have a wrong number. I’m not David, and I don’t recognize your name.”

Now, at this point, I expected the usual apology for a wrong number, and I was getting ready to hear a hasty “good-bye.” Only, it didn’t happen. The lady kept talking. I don’t even know what she was saying – nor did I at the time – I was so knocked out of kilter by the fact that her voice was still going.

“Can I speak to your lovely wife?” My wrong-number-who-wouldn’t-shut-up asked.

“Wife? She’s out of town.” At this point I should mention that I have a high-functioning ASD and was having a hard time making heads or tails of the situation. I didn’t know why this person was still talking, clearly ignoring the fact tat I was not – nor am I now – David. I didn’t know if I had perhaps misheard her name. After all, I had been fixating just prior to the call, so my brain might not have caught up with the auditory information I was receiving. All I could do was answer her question.

Presently, the woman went on to explain that my (David’s?) wife had been invited to some party, and she had not RSVP’d. Things were still not adding up, so I ask for the woman’s name again. She tells me, and I answer, “I don’t know that name.” By now, frustration was beginning to creep into my voice.

“Okay, whatever,” my masked caller responded. “I’ll talk to you later.”

I hung up the phone, mildly confused, and wondering what the kitchen floor thought of the whole ordeal. I crouched back down with my Lysol and 409, getting back to my obsessive scrubbing when it suddenly dawned on me that the lady on the phone had thought I was lying to her. It made perfect sense – the way she kept going on after my first attempt to disengage, the “whatever” and the “I’ll talk to you later.” She must have thought I was just trying to avoid her! I couldn’t clean for the rest of the night … well, except for some dusting and vacuuming…

Now I’m sure there is some moral to this story, but I haven’t figured it out yet. It was so strange, though, that I had to tell someone about it!