We all have an inborn and immediate need to communicate with the world outside ourselves. Of course, the nature and extent of that need differs depending on who we are, but for most people the ability to communicate — or at least the ability to learn how to communicate — is nearly effortless. Parents chatter and coo with their newborns, but we really do not teach them how to talk. We model the behavior and they infer the myriad rules of speech almost effortlessly. What are the distinct sounds used in producing speech? (Or symbols, for deaf children) What are the words? What is the syntax? How is that modified by the tone of one's voice or the non-verbal cues of body language and facial expressions? How can nearly all of these things be modified depending on the social situation?
If you ask an adult who is not trained in linguistics or speech therapy to answer these questions, they will be quickly overwhelmed. It requires years of study for someone to even begin to offer a coherent explanation. And yet, most infants and toddlers absorb it the way a dry towel absorbs water.
But what if your child doesn't?
My son, Alex, is autistic. When he was diagnosed at the age of 3 he could not recognize faces. His speech was almost entirely marked by echolalia until he was in first grade — that is he did not generate new sentences but just repeated sentences and sentence fragments that he had heard previously verbatim. Teachers at a special pre-school taught him how to have a conversation. First he says something, then the teacher responds with a related thought, and then he responds with another related thought.
He did not know how to pretend. As a baby he never babbled or cooed. In second grade, he was still working on greeting people. As a high school student, he could define sarcasm but often could not identify it in "the wild".
I should also mention that Alex is brilliant. He has scored extremely high in national mathematics competitions and recently finished a graduate degree in computer science from a top university on full scholarship. And while he still hates the telephone and small talk and at times gets confused with things like social niceties, sarcasm, or double entendres, he can be remarkably clear when speaking about subjects he loves. He lives independently and apart from some relationship issues and certain subtleties of speech, I am pretty sure he would say that communicating with people is not a problem for him. I think he is mostly right, although he misses some of the problems that he does have — which is the nature of his situation!
I love Alex dearly — and he has brought an amazing richness to my life in part because of how he has cast light on communication and socializing that I wouldn't have thought about for two seconds without him. But still, I cannot talk to him like I can speak with my other son, Simon. Simon and I can talk for hours, breezily segueing from personal topics to silly topics to intellectual ones. For Alex, the communication has to happen on his terms and be proscribed by certain rules if it is to be not stressful for him.
I am not a professional speech therapist or linguist or psychologist, but I do know what it is like to hold my young son in my arms and know that at some level I will never understand the world as he lives it. I know what it is like to struggle to teach him things — like the proper usage of "me" versus "you" — that most parents never have to think about. And I know what it is like to have to work to understand him well enough so that we could build even a basic relationship, or have a conversation. And I know the success that I could not have dreamed of when Alex was small — though that is mostly his doing and not that of his parents. In the next few pages, I hope to give you a taste of our journey.
The experiences that lead to Alex's diagnosis with autism are chronicled elsewhere, but the main drivers were social not linguistic.1 Alex was terrified of other children, handled transitions poorly, and needed his world to be very structured and routine. He did not generate play like other children, had a very different sense of humor, and when he was still a baby almost seemed deaf at times because of his lack of responsiveness. He was diagnosed with autism at age three.
Looking back though — especially after our second son began speaking — it was clear Alex's speech development was not typical. He never made the kind of generalization errors that most children make. For example, most children add "ed" to the end of verbs to make them past tense even when there are irregular conjugations. The past tense of go, is not "go-ed" but went. The past tense of run is ran, not "runned". Children make these mistakes for awhile until they learn about the exceptions. That is, the rule is inferred before the exceptions are memorized and internalized. Alex didn't make these mistakes. He only said things that he heard previously. And because he was a precocious reader (in fact, hyperlexic) and had an amazing memory, his vocabulary was quite impressive. This intelligence, though, actually delayed our realization of his difficulties, which was a common theme for us during his younger years.
He was learning language differently than other children. The first big problem we encountered was his pronoun reversal. Most children make the mistake of saying "You want to do it" when they mean "I want to do it." After all, whenever someone is speaking to a child they refer to him or her as "you." If they want the child to give them something they say "give it to me", with "me" referring to the speaker. Children quickly infer, though, that "me" refers to the speaker and "you" refers to the person being spoken to. It took Alex over two years to learn to use pronouns correctly.
Parenting books advise letting language develop naturally. Constant correction can make children self-conscious and structured exposition is less effective than just letting children's brains — which are naturally wired for language acquisition — do their thing. So that was the strategy we took at first — just being mellow. But it didn't work. In the end, we needed to develop a long-term, belabored, and explicit approach to getting Alex's pronouns right. I would have to say things like:
Alex, when Daddy says, 'Give it to me' the word 'me' means Daddy because Daddy is saying 'me'. If Alex says 'me' then 'me' means Alex.
I would have to refer to both Alex and myself in the third person or else he wouldn't understand. My wife and I had to go through similar explanations thousands of times before Alex finally worked everything out. Luckily he had the cognitive capabilities to learn things in this fashion, but in the meantime Alex had a long run of exasperating and fit-inducing incidents dealing with non-family members who were totally confused when interacting with him.
The problem for us was that mathematically and analytically Alex's intelligence was off the charts — as was his vocabulary. Therefore, it did not occur to us — or even to his pre-school teachers back in 1990 — that he could possibly have a developmental disability. After all, he had taught himself to read almost effortlessly at the age of three.
The inability to infer things from social interactions caused continual problems. How do you know when someone is speaking to you? When they are looking at you? Not really. For someone as literal minded as Alex, that meant direct, constant eye contact which is not how people typically behave. Even if I am speaking to you one-on-one in an empty room my eyes will wander a bit. In fact, it would be very disconcerting to you if I maintained a laser like focus on your eyes. And what about when you are driving a car or cooking a meal or are otherwise engaged during a conversation?
Alex made the supposition that everyone was always talking to him, since he could not really place himself inside the viewpoint of another person when he was young. That basically lead to three options: be completely overwhelmed, avoid social situations, or simply shut down.
There are other clues to when someone is speaking to you. They tend to use your name at the beginning of a sentence, for instance. But of course, they could also be talking about you, not to you. Then there is the context of what they are saying. If they say "your dress is lovely" but you are wearing a suit, then clearly the "you" isn't you.
Generally, we do not teach our children how to identify when they are being spoken to. Of course, we all make mistakes, and maybe children make them more, but they learn quickly and without explicit instruction. Alex, while very intelligent, did not learn this way. He had to be taught with flow charts and lists of rules with associated probabilities how to determine if someone was speaking to him. The thought of learning how to communicate this way is exhausting. The process of having to decode these rules and teach them to Alex was also exhausting, but it was fascinating, as well, and gave us an appreciation for the nuances of social interaction that we otherwise never would have noticed — although we used them every day.
Alex's different relationship to speech also affected his speech evaluations. After he was diagnosed with autism, he underwent a speech evaluation that showed a much lower level of passive language ability than we anticipated. We were sure it was wrong. For example, when Alex was asked how we came to the clinic he stared at the speech therapist blankly. And yet, with us he could talk for quite awhile about various modes of transportation. We took him to another clinic where his passive speech was also evaluated at a low level, until they had him respond to questions by typing independently into a handheld computer — selecting A, B, C or D on multiple choice tests. At first we felt vindicated about our perceptions of his speech because his passive language tests showed him to be very advanced, but after working with first speech therapist longer, we realized that we didn't understand the social or pragmatic nature of speech. Yes, Alex knew the definitions of words many years beyond his chronological age. But when asked "how did you get to the clinic" he did not know if the questioner meant by what mode of transportation, by what route, or the chain of events that lead him to come to the clinic that day.
A sentence might appear simple, but its meaning depends on the particular context in which it is uttered — let alone the intonation and the relationship between the speaker and the person being spoken to. This can make it harder or easier to communicate depending on your social awareness and skills. I am currently living in a foreign country and am trying to learn the local language. Sometimes I only understand a few words in the sentence but I can still get most of the meaning because I understand the context and I can glean information from people's affect and gestures. Of course, sometimes the culture is different enough that I am totally lost.
Alex is basically living in another culture — the culture of people who are neurologically typical. People with autism or Asperger's Syndrome often describe themselves as coming from another culture. Temple Grandin has referred to herself as an "Anthropologist on Mars" who must constantly uncover the customs and rituals of the alien culture in which she resides in order to learn "scripts" on how to interact with people who are not autistic in various social situations.2
Going to School
Alex entered kindergarten in 1992 when high functioning autism was only beginning to be understood. Luckily, it was not 1962 or he would have had a much more difficult life. The law in the US would not have guaranteed him an appropriate education or additional services such as speech therapy. Also, he most likely would have been viewed as having emotional problems or general cognitive problems, without an understanding of how he learned and how he related to the world outside of himself. He was also fortunate to be born into a community that had a special children's center that was leading edge. Even still, knowledge about autism was much more limited then than it is now and we had to do a lot of learning by doing.
Alex attended kindergarten at a university town that bordered a poor, Appalachian area. That meant his classmates were either faculty children or children from disadvantaged homes. It was a bifurcated population. Interestingly, many of the behavioral and social problems Alex had were similar to those of children from disadvantaged homes, which unfortunately introduced some skepticism among the staff about whether Alex was really "autistic".
During his first few months in school, though, they became believers. One day I came into class to talk to his teacher and hung out in the class for awhile observing. Several kids I knew came over to say hello. When I went to leave, the teacher said, "Do you want to say good-bye to Alex?" I gave her a quizzical look. "Um, he has no idea I'm here," I said. She was taken aback. Then I went over to him, knelt down, looked right into his eyes and said, "Hi Alex!" His face lit up and he said "Hi Daddy". That was an important step his for teacher.
Alex did not respond the way the other children with problems responded. He did not become socialized by his peers. In a short amount of time, the teachers began to see he was different. The children, of course, figured it out even quicker.
Some of the interventions we suggested — for example, letting himself remove himself from the classroom for short periods when it became overwhelming — were initially frowned upon by the educators because they were afraid the other children would be jealous of Alex's privileges. That never really happened because the other children understood he had different needs.
Often, interventions were quite simple. Alex did not know what it meant to be a member of a social group. He would invariably get separated from the group whenever his class walked from their classroom to another room (e.g., the art room or gym). His teacher decided that Alex would always be second in line so the whole class could look out for him. Being first in line was just too valued a position for Alex to always be placed there, but being in the second slot allowed the whole class to cooperate in keeping Alex with the group. In second grade, his speech therapist would walk the halls with him simply having him greet people.
When Alex started second grade his meltdowns were measured by the hour. Time after time, incidents would occur which made no sense to him or seemed blatantly unfair. A teacher would ask a question and tell the children to raise their hands to be called on. Then, she would call on a child who did not have his hand raised. Alex would have a fit because the teacher wasn't living up to her rules. He did not need to be punished or have some sort of behavior modification. What he needed was an explanation. We explained that the teacher's goal is to make sure all the kids learn and it is important for her to be able to call on children without their hands raised to see if they are shy or do not know the answer. Once this was explained to him, the fits (for at least this particular reason) stopped almost immediately.
Therefore, in second grade Alex had his own social interpreter — his personal aide. Her job was to explain the world to Alex, to help him understand the reasons behind the way people behaved and the unspoken communication that was constantly buzzing every which way across the room. For to Alex the world was awash in things he just did not understand, and so were unpredictable, confusing, intrusive and scary. Why did a waiter put a glass of water down in front of him in a restaurant if he did not order it? Why would a stranger tousle his hair? Why would someone he did not recognize know his name? What is the difference between lying and pretending — and why is the first one considered very bad and the second one considered very fun when to his mind they were exactly the same thing? Why were they still doing social studies at 9:18 when the schedule posted on the wall clearly said that social studies ended at 9:15?
His aide's job was to (1) anticipate his confusion and help him understand what was about to happen and why, (2) resolve his confusion when things went awry, and (3) calm him down, support him, and be his friend when the world was just too hard to take.
Slowly, Alex's crying fits were measured not by the hour but by the day and eventually by the week. The next problem arose in third grade when he only needed his aide intermittently. The problem is that Alex's aide's job was to work herself out of a job — that is, to help Alex become as independent as possible to the point where she was no longer needed. But she felt like she was not doing anything if she was just hanging around as a back-up much of the time and so started holding Alex to even higher behavioral standards than the other children. It was becoming oppressive, until the classroom teacher, realizing what was occurring gave her additional responsibilities with other children having various difficulties. Everyone gained. Alex got more independence (but still had his back-up in place), and the other children and the teacher got extra help. By the end of fifth grade Alex no longer had a full-time aide — that year he only had an aide for the transition to school and to getting ready for going home.
Beyond Primary School
Clearly, social behavior and communication become much more complicated as children enter adolescence. Fitting in becomes more important and children can sometimes be cruel. They are also less motivated by pleasing their teachers and more motivated by impressing and being accepted by their friends. Explaining the social goings on of a middle school is an order of magnitude beyond what occurs in elementary school. Needless to say, the middle school years were very hard on Alex. He was the target of bullying and was pretty much defenseless against it — especially since he still had problems with facial recognition so often he could not even identify his antagonists.
During this period there was no way to deal with everything going on, so we had to prioritize — that is, we picked our battles. For example, there was no reason to work extensively on how to deal with hallway bullying during class transitions. That was a situation which would disappear over time as soon as Alex left middle school. Why learn a bunch of rules that would become irrelevant in a few years when we could concentrate on other issues? So the solution was to let him leave for his next class a couple of minutes before the bell rang so he could quickly go to his next class before the hallways filled with students.
Still the need for social interpretation remained. In high school kids would sometimes tussle playfully in the hall. Alex thought they were fighting. Seeing the world in very black and white moralistic terms he would feel the need to intervene. How do you explain with an explicit set of verifiable rules how to distinguish between a fight and horseplay? I assure you this is more difficult than you first expect. Especially if you try explaining it to an autistic person who will continually uncover the unconscious assumptions and distinctions you are making without even realizing it.
Alex is a very clear writer — and while reading fiction can baffle him — he can absorb non-fiction with ease. And yet, communication remains difficult. When we are with him we see all the information circulating around him that he simply does not register. Language is not just words. But in the world of blogs and e-mail (especially with emoticons!) it is much easier for him. Alex's two blogs are the main way we communicate with him. If something is too private for the blogosphere then we resort to short, efficient e-mails. It is not surprising that blogging and Facebook and other written electronic communication is greatly favored by autistic people.
Understanding is also needed. During high school Alex had an internship at a physics lab. The first day he walked straight into his supervisor's office without knocking or saying anything, walked directly up to the man and stood looking at him from a couple inches away while he typed on his computer. A very unsettling maneuver. But Alex didn't see the problem. His supervisor's door was open so he didn't want privacy, Alex had no conception of personal space, and he thought he was being thoughtfully patient waiting for his supervisor to finish what he was doing. Alex didn't say anything because he thought it was obvious that he wanted to talk to him. Alex picked up something from the supervisor's desk and examined it while he waited.
Later his supervisor told us he was initially a bit freaked out by this, but then he thought about his child who was five years old. He said to us that that is how his child would behave. He said once he thought of Alex as a five year old graduate student, the summer went great. What could have been an internship ending incident —or a bigger disaster since at the time Alex still hadn't fully got the message that playing with jewelry other people are wearing is not a great idea — was easily handled by an accommodating boss.
Alex, of course, is more socially astute now but he will never come across as a "typical person" with "typical behaviors." There are benefits to this, too, though. His honesty and genuineness are greatly appreciated, as is his quirky sense of humor. And the fact that he doesn't appear totally "normal" at first does clue people in to the fact that they need to spend a little time to understand the way he communicates, his strengths, and his challenges.
Knowing Someone Else
Do we ever truly know another person? It is impossible to get in someone else's mind. All of our attempts at communication are simply approximations of trying to share each other's thoughts — of trying to place our thoughts in someone else's head and vice versa. The closer we are in age, in culture, and experience the easier that task becomes. When someone else's brain is wired differently than yours — say you are neurologically typical and they are autistic — it becomes harder. Luckily Alex is very verbal, articulate and intelligent which makes things amazingly easier for us than for parents of children with non-verbal or cognitively delayed autistic children. Nevertheless there are conversations we will never have. And there are things I just have to accept on faith — for example, Alex's claim that he has no burning desire for friends and does not experience loneliness, even though I see him enjoying live action role playing events and regular gaming nights at the local game store. The best we can do is to keep communicating as best we can, to be attuned to what we know and don't know, and to try to unlock our own methods of communication so we can make them as compatible as possible. To understand ourselves better so that we can understand others.