Asperger Syndrome Grows Up – Recognizing Adults in Today’s Challenging World
By Roger N. Meyer, Aleta Root, Linda Newland
Traits by Age
Under extreme stress, AS adults can exhibit very child-like manifestations. However, as individuals age, most develop a wide variety of coping skills and discover ways to mask their behavioral traits so that under many circumstances they can “pass for normal”.
This section gives the reader a glimpse of telltale traits of Asperger Syndrome commonly expressed at each stage of development. Readers must remember that every AS individual is different and they may not manifest all of the traits identified for each age.
In infancy and early childhood, this section will focus on additional “surprising” traits rather than those most commonly discussed in the vast literature on AS children. The reason for this emphasis is to make the reader aware of some of the features of early AS expression that prompt inexperienced professionals to conclude that the child is normal or that they see nothing wrong. Parents’ primary complaint about diagnosticians they visit in order to understand their own children is that diagnosticians, not prepared for “extraordinary phenomena” also overlook the obvious signs of autism in children. If the “A” word is not in the parent’s vocabulary or isn’t looked for by savvy professionals, it is often not seen. Many of the signs of AS are so subtle and mercurial in children that they are overlooked altogether, despite caregivers’ insistence that the child demonstrates the “missing” behavior all the time under real life, rather than office-visit conditions.
Although the DSM criteria call for “normal” speech development, in the preschool years an AS child may hesitate talking well beyond the age at which their peers speak (delayed speech). From few words, an AS child may suddenly speak in full sentences” rather than going through some of the trial and error steps shown by other children. This development may startle observers. There is a simplistic but surprisingly accurate explanation: AS children are acutely observant of details and may rehearse things in their heads long before they express their thoughts in speech. Even at a very young age when a child is asked why he hasn’t spoken before, he may say something as disarmingly simple as, “I didn’t need to say anything before.” Such a response may already reflect the child’s undisclosed fear of making mistakes or not being perfect “the first time around”.
An AS child may begin talking in complete sentences about complex issues well beyond subject matter mastered by a child of that given age. These sentences may appear to be memorized; indeed, many of them are, from sources heard or read by the child, who may be a precocious reader (hyperlexic). Listeners are often so bowled over by the length of the expression and sophisticated words being used that they rarely determine whether the child actually understands the meaning of the sentence or particular words used. Mastery of language extends to skills way beyond word recognition and memorization. It also involves understanding the pragmatics or contextually proper use of language. If there is doubt, further testing by a speech/language pathologist especially trained to test for semantic-pragmatic disorders is warranted but rarely conducted with linguistically precocious pre-school children.
Play patterns are a dead give-away and predictor of the child’s current and future difficulties with social communication. The AS child does not know how to properly initiate contact with other children, or may have done so with poor results often enough in the past and been rejected by them that an early-established pattern of self-isolation may already be in place. The child will play by himself, even with “with” children. The child may be oblivious of the welcoming conduct of other children, or totally confused about how to initiate conduct in the absence of adult help in becoming included in the social world of other children.
The AS child may remain with a “mature” and serious demeanor in the midst of other children’s quickly changing moods. Such “model conduct” is especially true for AS girls whose general temperament may move them to being passive. What the AS child may be doing is observing or studying the other children, trying to “get it right” before making a first step to participate with others. At this very early age, they have learned not to be risk-takers, and other children sense that about them. They are “no fun”.
AS children may rock, “fidget”, or even “flap” when concentrating. The child may have unusual vocalizations (a certain word or words, hum, click, grunt or the sound of a motor) that occur frequently when the child is concentrating.
The child may scream and “meltdown” in a situation with many people around (like the grocery store, or parades). He is unable to participate in “imaginary” play, and on close observation seems to be acting out entire behavioral and verbal scripts from memorized or favorite games, stories or videos. He may spend hours at a time lining up object or sorting them—not using them for the play purpose intended or commonly accepted by other children.
AS children experience far more ear infections, digestive disorders, “tummy aches” migraine headaches, and undiagnosed or late-diagnosed sleep disorders. AS children often miss out on early social experiences because of illness and the effects of illness on their temperaments. If they aren’t behind “before”, once they’ve missed a certain critical mass of days in certain settings they lose their chance to gain a place in the social pecking order of very young children’s social groups. Even without health issues affecting attendance, AS children have substantial separation issues. They are often responsible for a child not attending pre-school groups. No amount of adult “repair” efforts can overcome the effects of having missed certain bonding opportunities. Parents often find themselves being asked to remove their child and to find other child-care and pre-school arrangements, whether once the child arrives he is a behavior problem or not.
Many parents of AS children report difficulties with their children’s toilet training. “Accidents” continue through much older age throughout the elementary school years. The child may avoid eye contact with children and adults, or be highly selective with his eye contact. He may seem to have unusual difficulty in learning to dress himself. Problems with eye-hand coordination, time management, avoiding distractions, “getting lost in thought” and other disturbances to a smooth routine may contribute to delayed self-care of all kinds.
In regular school, the child cannot carry on reciprocal conversations and is more inclined to carry on monologues. He prefers the company of older or younger individuals. Unless they really listen in to the child’s conversation, teachers and administrators incorrectly assume that a child is “social” because he is seen talking to another child. Even during structured events, and invariably during unstructured ones, the child will be a “loner off to a corner or noticeably right at the outside edge of group activities.
The child may be uncoordinated, and have difficulty with any activity that requires bilateral coordination or two-handed coordination. They may have difficulty swimming, sustaining an activity that requires good balance or coordination of their body parts. They refer to themselves as “klutzes and geeks”. So do others. AS children are among the last ones picked for team events, whether by the children themselves or by teachers. (Teachers may reinforce the marginal nature of the child by encouraging or even participating in the social exclusion conduct of their students.) They are rarely shown leisure or fitness exercises that are individualized enough to become a part of their adult life. Predictably, many adults with AS have little interest in their own personal fitness.
Many AS children have deficient fine motor skills (rarely improved in later life). Handwriting is often laborious and awkward. Papers are messy. The child lacks self-organizing skills — even if they complete homework, they often lose it before it can be turned in. Extreme spikes of educational interest appear with the first formal in-class assignments. They are very obvious by the time homework is first assigned. The AS child may take naturally to one or two subjects but has absolutely no interest in others. Study habits are inefficient because the student’s memory or other learning abilities are deficient. An AS child can study one subject forever during the week and “lose it all at test time”. One mother of an AS son writes: “My son would study all week on his spelling words, writing them, orally saying them, looking at them, but come Friday it would be like he had never heard of these words ever—and week after week he would fail each spelling test.”
The child may be hyperactive for any number of reasons, some of which have nothing to do with ADHD. The child may simply be bored, or need time to decompress in the midst of a stressful subject, or become sensorially overloaded and needs to find relief. He finds it difficult to stay in his seat for an extended period of time because it is “uncomfortable”. The child may stand up every now and then, or walk about the classroom, or walk out of the classroom in the middle of the lesson, causing the teachers, administrators, and parents considerable concern.
Unable to find words to describe tactile overload or tactile and other preferences, a child may refuse to wear fashionable clothing or become demanding a certain type of clothing — a certain color, a certain style, or a certain type of fabric. Before wearing anything, the child may demand that the tags be cut out of every stitch of clothing. The child may want to wear the same “uniform” day after day revealing distressful personal hygiene and self-care issues that may remain life-long problems.
The child may adopt a loud, high, or monotone voice that is so identifiable with AS. Many girls and some boys will retain child-like “small voices” or be resistant to remediation of vocalization issues way beyond puberty. The child’s sleep disorders, not as much a problem prior to the time when he is expected to manage his own time, become huge problems by contributing to family stress or squabbling for shared parental attention among siblings.
Food preferences and controlled diet, somewhat manageable at home, become major challenges once the child eats away from home and starts sharing food with classmates. Strong reactions to some foods and food odors may cause him to refuse to eat with other children. His reactions may be so severe that children avoid him because his behavior becomes obnoxious or invasive as he openly criticizes other children’s food choices. The child may be so upset around food issues that he fails to eat enough — or at all — at school meal times. Add food deprivation to sensory stress and sleep deprivation, and you have an instant recipe for a student so stressed that he is unable to learn.
The stress of holding it together while at school may cause the child to “melt down” as he arrives home. He may disappear to his room or sit at a computer or video game for hours trying to unwind. He may sleep for hours, upsetting family life at a time it is likely to be the most active. At this stage parents who do not understand AS may begin to put additional pressure on the child to “conform” to their expectations about the child’s behavior and performance at school and at home. As lessons and assignments become more complex in middle school, parents with these reactions cause more stress, confusion, and frustration for the child. If the pressure is severe enough and there is insufficient relief and understanding at home, this is a time when the child openly expresses thoughts of suicide.
From middle school into high school, the AS teenager’s lack of self-organization (executive function skills) and spikes of interest (as well as troughs of disinterest) intensify. Ever more conscious of other children (and often late in becoming so), the AS child becomes the brunt of jokes and the victim of bullying. With delayed social and communication skills, the child experiences the swirl of constantly changing expectations of teachers, fellow students, and his parents. By this time the AS child knows that he is different and not accepted by others, but rarely has insight into “why”. Out of depression and anxiety, the child may start to withdraw from previous sources of support not with the idea of being more accepted by his peers, but from a desperate desire to be left alone. If the child has a special interest that gains him acceptance by even a few persons, whether peers or adults or any positive role model or mentor, he may “make it through” high school scathed but as a survivor. Many AS children are not so lucky. Parents try every thing they can to prevent their AS children from becoming drop-outs. Nevertheless, many do drop out and seriously compromise their chances for continued education, decent employment and living independently.
AS students rarely date in high school. Even though they may see others “pairing off”; they have little idea how to initiate this kind of social conversation or contact. They may approach others in very juvenile ways. That doesn’t work. They want to be “normal” like everyone else but have no idea how to achieve it. By this point, AS adolescents have moved beyond the capability of most social skills specialists to bring them up to speed with such advanced skills. Social skills’ training for AS teenagers rarely includes “the graduate course” of how to date.
For most AS high school students, homework is a major challenge. The student has not developed study skills that help them record assignments; they forget texts and materials needed to complete lessons, have a poor concept of priorities and little success with envisioning efficient sequences to accomplish tasks. They do not know how to ask for help. They manage their time poorly, and don’t know how to initiate projects. AS students put perfectionist demands on themselves that are unrealistic, often as a result of having been repeatedly criticized. Faced with an assignment they could otherwise complete if they took it one step at a time, they engage in catastrophic and all-or-nothing thinking, a process that often leads to no work being turned in. For some “grind students”, homework time at home may exceed the time the student spends at school. Other students resist a repeat of the day’s struggles at school and routinely force pitched battles between themselves and their parents over the issue of how much homework — if any — they will do. In some cases, a parent will complete some or all of the student’s assignment, resulting in passing grades but no learning by their child. Thus, what looks good to others on paper isn’t what it seems. Such parent action teaches the child learned helplessness and supports the child’s expectation that if they resist something long and hard enough, they can wear others down to do it for them. Such notions carry way into adulthood.
Some but not all AS students are unable to generalize from classroom or homework lessons and apply them to everyday life issues. For students with this type of specific learning disability, they fail assignments demanding that a student analyze and “extend” a problem into a general application. Complex problem solving of this kind is only partially related to the student’s executive function challenges. There are other deficient cognitive processes also at play.
AS individuals categorically have difficulty with team assignments. This holds true for graduate students and most adult AS employees as well as kindergartners. They do not have the social or the cognitive skills required to be sensitive to the kind of sharing, collaboration and sensing others’ needs, as well as the skills to delegate required for completion of team projects. If forced into teamwork assignments, it is likely that in elementary and secondary school they will be teamed with “goof-offs and losers” because teachers rarely have time to build teams composed of students with poor social skills to start with. Misplacement with students having similar social and communication deficits means that the AS student is robbed of the opportunity of learning essential team skills from a balanced, heterogeneous group of students.
Asperger Syndrome and Telling the Truth
Most challenges of AS adult life have already been covered in the writing above. However, one issue hasn’t been addressed: the issue of AS individuals and how they handle truthfulness.
AS individuals rely heavily on rules, most of which they understand to be immutable. The one thing few of them understand and truly take to heart is that nearly all rules allow for exceptions to be made. In some cases, it may be possible to come up with clear guidelines governing when a given rule doesn’t apply. With their encyclopedic data bases and given enough time to sift their view of a situation using those guidelines, AS individuals can take an almost infinite number of sub-rules and come up with the socially appropriate response.
The operative words in situations like this are “data base” and “given enough time”.
AS children begin early to build their database for determining the correct course of action in difficult situations. They are taught to tell the truth, and they do so willingly and automatically. As noted above, some AS children act as “truth enforcers” uncritically applying their unsophisticated understanding of rules to anyone of any age or authority level.
The Good Side of Telling the Truth
Finding themselves in the midst of a situation that calls for fast footwork — lying — AS children are, at first, notoriously poor liars. If they are verbal and outgoing, they may go around acting as the “truth police”, correcting others on factual details and not even hesitating to call someone — anyone — a liar for their not telling the truth.
It is safe to say, categorically, that the younger an AS child is, the greater the likelihood that he is telling the absolute, unvarnished and complete truth. One cannot say this for non-autistic children of the same age.
Here is one mother’s description of her son’s “rules super cop” reaction to a common rule being broken:
“My AS son thought it was a mortal sin for me to go through the express check out line with more than the maximum number of items posted on the sign above the cash register. I had eleven items; the sign said nine! How dare I break the rules! He would have regular, dramatic meltdowns as others in line ahead of me or behind me stared in amazement at his behavior.”
An even younger child combined a number of no-nos with regard to telling the truth, without regard to the consequences. The same mother describes this “different behavior” this way:
“AS individuals can also be blunt and disarmingly honest. Observing someone on the street or in a store, an AS child might blurt out, ‘Look at her. She is soooo fat! She should go on a diet!’ That might be true but it is socially inappropriate to say this in public because it hurts the other person’s feelings. AS children have difficulty understanding their own feelings, and therefore they also have trouble understanding the feelings of others: ‘Why would it hurt their feelings as every one can see that they are fat? I am only saying what ever one else knows to be the truth.’ Without careful, repetitive training, these children simply do not understand the concept of ‘socially unacceptable’ public observations. Some parents teach their children the “No’s” without teaching them how to express their concerns in socially appropriate ways. Rather than saying the wrong thing, or teaching the child about socially approved white lies or showing them how to express their true feelings later, many parents adopt a very ‘autistic-like’ rigid response to the social misbehavior of their children. At the point where it no longer becomes possible for parents or care givers to watch every word or behavior of the child, it is essential that our children understand their own particular “flavor” of AS and start to deal with the world from an accurate self-understanding of their unique perceptual challenges.”
“Good Withholding; Bad Withholding”
Many childhood games and much of childhood social life is based upon imagination, trickery, deceit, the dynamic of telling and keeping secrets, and developing an increasingly sophisticated understanding of the foibles of others while still building mutual trust with them. AS children do not understand that the telling of secrets and lies and keeping them hidden from others is the cornerstone of much early social bonding. They do not understand that sometimes hiding the truth or fudging it is what keeps a bond together.
Asperger Syndrome children generally dislike games where these skills are developed. They prefer role-plays, games whose scripts and whose characters’ actions are predictable, even if they are bad actions.
They dislike being lied to directly. They dislike being told half the truth rather than the whole truth especially if they feel something is being held back from them. They are frank in their descriptions of people and events, often brutally so.
The problem with AS children and many AS adults is that they have no “escape valve” for working their way out of instant dilemmas, no way of fudging or being indirect with more words when a few, direct words do perfectly well. Those words hurt, and their words often land them into serious trouble. Such words blow away potential friends. They violate confidences. They erode trust. More than anything, they make the person uttering them an unsafe person to be around.
No one except an AS person relishes absolute and stunning honesty all the time. Almost from the time we are placed next to another child, with or without language, certain things are best not done or not said. AS individuals have to learn this idea through rough and painful lessons.
The above description applies to the very young and the very naïve. While many AS adults remain naïve and gullible, they aren’t stupid. Rather than lie, they may remain silent about a situation. If they aren’t particularly talkative, that’s where things remain with them.
But some AS children — an increasing number of them thanks to early social skills training — learn the difference, and start their practice somewhat late, but practice they will, and as with most practice, the more they do something, the more comfortable they are telling good social lies. Still, doing so still involves a lot of deliberation and mental effort. They will often do so out of their perception that a lie is what a person they respect “wants to hear”. They can easily be led to lying, especially by persons with ulterior motives, such as criminals, people who abuse others but upon whom the AS person depends, and by unscrupulous law enforcement professionals unaware of how naïve and vulnerable a person they have in interrogation.
There is another category of AS children who also learn how to lie, and lie convincingly: children whose upbringing is physically and psychologically traumatic and full of unrelieved chaos. For them the telling of lies isn’t only good practice. In the past, it has helped them survive life-threatening situations. If they’ve become involved in the child welfare system for any length of time, they also learn to lie to protect themselves from their “protectors”.
They get good at it. They get pathologically good at it. And, these individuals grow up and become adults.
There aren’t many such inveterate liars among adults, but it would be unfair in describing individuals whose individual manifestations of AS are so unique, one from another, were this fact not known.
There is one other bit of unpleasantness common to many adults with AS. Many adults who have reached a modicum of independence and control over their own lives may have done so through periods of self-medication and substance abuse. In instances where they have been able to stabilize their support systems to include marriage and employment, the reasons for drug and alcohol abuse often fall away. Except for individuals coming from families with a genetic proclivity towards substance abuse, they are able to live their lives fairly clean and sober, sometimes to the point of becoming teetotalers and swearing off all medication as harmful and un-natural. It is important for the reader to remember that despite their past abuse of drugs or alcohol, they are Asperger Syndrome first and foremost, subject to all-or-nothing thinking.
As with the non-autistic population, there is a small core of autistic individuals who become truly addicted to drugs and alcohol. While the reasons for turning to self-medication — to dull the pain of rejection and misunderstanding by others — are understandable, successful treatment and rehabilitation of this small core of individuals is about as likely as it is for their non-autistic counterparts. Depending upon the length of time of their addiction, it may be more humane to consider mental health attention for “wet” addicted persons than no treatment at all. Clearly, traditional 12-step programs and non-traditional anti-abuse programs are not for everyone. Depression is a constant companion to autistic individuals. There is a good but sad chance that in a few instances, dramatic behavior associated with a severe depressive episode or deterioration of their physical health may well “end” others’ efforts to help such persons.