A Stranger in the Midst:
A Look at Autism
You have a beautiful son who has all of his fingers and toes. He hears and sees. Walking and running are no problem. He looks like what every parents hopes for, the child with no obvious physical impairments. A few years go by and he is growing up so fast. Once he reaches the age where interaction with others and imaginative play should be the staples of his pastime, you notice that some things really are not quite what you thought they were. You start to realize that your son really does not talk as often as you have let yourself believe and that most of the things he has said are not original. He has been quoting you, people he has heard elsewhere or the television. He is not interacting with other children the way you expect him to. He seems to be completely absorbed in his own world. Eventually, after waiting and watching and hoping that things will change, you take him to a doctor and then on to therapists because you have been informed that your child has a form of autism.
Autism is a pervasive developmental disorder. These disorders are characterized by “severe impairment in several areas of development . . . or the presence of extremely odd behavior, interests, and activities (Halgin, p.347).” Autistic disorder follows the diagnostic criteria for a pervasive developmental disorder, but is more specifically characterized by “severe delay and dysfunction in communication, language, and social and cognitive development (Lund & Pelios).” Susan Folstein, in her article entitled Autism, states that the diagnostic criteria (according to the DSM-IV) require the presence of three features before the ages of four and five. The three features are failure to develop normal social interactions, no or abnormal development of language, and restricted range of interests and behaviors. A child with autism displays an inability to communicate effectively with those around him along with a lack of imaginative play and speech and an inability to display emotion or interest in others (Lund & Pelios). For the parents of a child with autism, emotional problems may arise when the child resists cuddling or seems to dislike being touched. A child with autism is typically content when in a familiar place and with a set routine; any change in the environment can cause intense discomfort and will often bring on events such as a tantrum. Social interaction is awkward and often painful. Children with autism develop an attachment for parents and caregivers later than most children develop and seem to have little to no interest in playing with other children. These symptoms can diminish as the child ages; however, they may still remain extremely awkward in social settings. Poor eye contact, persistence with one topic of conversation and the inability to produce small talk all add to the awkwardness of social interaction for an autistic person (Folstein).
A mother, Donna, writes in an online journal about her experiences raising a child with autism, the ins and outs of interaction with her children and the issues faced at school and with other people. She details the frustrations and hopes of watching her son deal with the social interactions that he must face and the awkwardness of not quite fitting in with his peers. Often the entries about watching her son grow mention the heartache at knowing that he wants social interaction but that he does not know the way to approach others and the fear that he will be cruelly treated or ignored. In this particular entry, she writes about driving past his school and seeing him on the playground with the other children:
“…he was standing all alone on one of the railroad ties that border the swing set area, not another child within twenty feet of him. A week ago, I saw a couple of other kids tugging at his coat -- I couldn't tell in the five-second view I got whether they were playing with him, teasing him, or worse … As heartened as I am on a daily basis by Archer's accomplishments, both social and academic, I live in fear that he will be taken advantage of by cruel kids. He doesn't understand the intricacies of social life -- he's inordinately excited by any attention paid to him by another child, although he doesn't have the skills to hold up his end -- and that makes him vulnerable to those who want to use him as a pawn in their own games … On the other end of the spectrum, I worry that his classmates, single-mindedly pursuing their own projects, will just ignore him. Even though he doesn't seem to mind it -- he'll just go into autism mode, humming and flapping his hands as he spins in circles -- the fact that he knows to be impressed and grateful when others do reach out to him makes me think that underneath the self-absorbed behaviors, he's lonely (Bowman, 2-15-08).”
Donna mentions several times throughout the entries her concerns that Archer will have a hard time making or keeping friends or that his lack of social concern or knowledge will keep him from being successful and happy in life. In a different entry, struggles are presented with the way Archer approaches conversations and the way he exists in his world and not others.
“ …most of his conversation consists of information about the temperature, the time, various street addresses where important people in his life reside, dates when crucial events will take place, and the relationship between all those numbers -- which collectively makes up the framework on which his happiness depends ...(Bowman, 8-13-07).”
These deficits are not language-based or a physical impairment. They are purely cognitive and have to do with the ability to pay attention to others and extend awareness outside of oneself. Being autistic is being self-obsessed. Not in the narcissistic sense, but rather in the inability to really understand another and the lack of knowledge to start that process.
Abnormalities in language are also a major factor in the social awkwardness that defines autism. Approximately a third of autistic children will never develop speech past the occasional word and will never attempt to learn another form of communication. The other two thirds of autistic children develop speech, usually after age four, but in a varying range. The amount of speech can range from phrases to relatively normal speech in structure (Folstein). Seen repeatedly throughout autistic speech is a characteristic called echolalia, which involves repeating words or phrases heard in conversation. This happens when the child does not understand what was said but is capable of repeating it. A child with a less severe case of autism may be able to use language effectively but is still unable to maintain a conversation exchange that would be considered normal. With this disorder, those who do develop communication skills are highly unlikely to initiate a conversation or remain involved in conversation for an extended period. Characteristics of autistic speech extending past echolalia involve monotone voice, odd rhythm, unusual rate or pitch and may often confuse pronouns such as I and you (Halgin, pg.349). In addition to these, nonverbal gestures are often lacking. These gestures can include “pointing, nodding, and shaking the head with respect to questions and normative eye contact (Lund & Pelios).” According to Folstein, pragmatics is the most constant and even defining abnormality of language in autism. Pragmatics is the social aspect of language, such as showing an interest in others’ thoughts and opinions, coordinating eye contact and speech and knowing how to take turns in a conversation. For the autistic person, speech is used to communicate needs or provide information, not to chat or socialize.
Communicating with a child who is autistic presents several problems in that listening and speaking are often issues and are key points for interaction. Language is used to exchange information, yes, but it also used to build relationships. When conversing with others, we have to be very aware of the direction of the conversation and which topics follow and which do not. Donna details some of Archer’s problems with communication due to his autism, stating that he can’t “separate relevant details from irrelevant ones (Bowman, 8-13-07).”
“It's that ability to intuitively discriminate among the various facts, objects, and symbols in our environment that makes it possible to share a common world with people in communication. And it's exactly that that autistic individuals have to learn step by step, rather than understanding through the usual socialization processes. Until they do, the world that makes sense to them is going to be made up of stuff that doesn't make sense to us, and vice versa. In the final analysis, that's the difference that keeps autistic people locked in their own world -- the trait that gave them their name, from the Greek for “self” (Bowman, 8-13-07).”
The third diagnostic feature of autism is restricted range of interests and behaviors. Someone with autism may have only one or two fixed interests in which they are intensely engrossed. This fascination often leads to the exclusion of anything else, and makes conversation and education difficult. They may be interested in the parts of an object, moving objects; or in conversation, they may be intensely preoccupied by one specific subject, such as baseball or cars. Autistic savant syndrome is a variant of autism where the individual has an extraordinary skill, such as mathematical or musical abilities. Routines and schedules are of the utmost importance and changing or disturbing any part of a ritual or routine can precipitate uproar (Halgin, pg.349). Other behavioral oddities are abnormalities in cognition, sensory experiences, and motor capabilities and tendencies. Abnormality in cognition is perceived as performance on intelligence testing. Reports show that about 75% of autistic children have IQs below 70, but unlike mental retardation, intelligence is not impaired in all domains. A common disability in autism is the inability to see the whole instead of the parts (Folstein). Sensory abnormalities, along with motor abnormalities, are presented through the child’s withdrawal from touch (of several forms) and through odd gesturing and facial expressions. An autistic child is usually unwilling to cuddle with a parent and has odd gesturing such as “excessive hand flapping, body rocking, eye gazing . . . tantrums, aggression and self-injury (Lund & Pelios).” Often the sensory abnormalities will lead to evasion of touch, even reaching to clothing. Certain fabrics may be abrasive and an autistic individual may even go through a phase of wanting to wear nothing at all. There is also sensitivity to loud noises and an extreme sensitivity to heat. One of the more dangerous aspects of this sensory abnormality is that the autistic individual may not process pain in the usual way or does not understand the concept of going to someone else for comfort. These abnormalities often further remove those living with autism from society.
Archer, as Donna writes, is obsessed with numbers. It is the numbers and sequences in his world that make everything okay. For Archer, numbers, times, sequencing and patterns are fascinating. She mentions in an entry that when Archer is asked a question, he will respond, but it is his answer that is intriguing. He will often answer with numbers relevant to the question, but indirectly (Bowman, 9-7-07). Even from early childhood, Archer was interested in numbers:
“Ever since we can remember, he's kept time with his hands (flashing his private number signs at breakneck speed) while watching videos, singing songs in church, or just running around the house … he got so attached to the therapist's stopwatch whenever testing was being done that he insisted on seeing it at all times. We finally got him weaned off of it to the extent that he gets a timer from the supply closet when he arrives, sets it for 50 minutes, then leaves it outside the room so he's not constantly interrupting the scheduled activities to check on it (Bowman, 9-7-07).”
When raising a child with autism, a constant anxiety is how the child will eventually fit into society and if they will find a suitable job and be able to take care of themselves. Naturally, with the obsessive behaviors of autistic individuals, this is a well-founded concern. Logically, Archer would need to find a job that allowed to him to keep a well-defined schedule and an environment that allowed for working with numbers or time. Finding gainful employment is something that every parent wishes for their children and is one of the things that drive parents to push their children through school and into higher education. Finding gainful employment that is socially acceptable and fits within the world of an autistic individual is something that their parents can hope for and help them achieve, but there is great anxiety and worry that comes with it (Bowman, 9-7-07).
Children and adults with autism face unique challenges. Every child attending school or someone working at an office has to face the gamut of finding new friends, but for the person with autism, that can be almost the impossible. Making friends and finding a niche in a place of employment or even recreation is difficult because social situations are awkward and hard to navigate. Without the knowledge for rules of engagement and the awareness to follow those rules, it's hard to interact with others in a way that leads to friendship and companionship. Donna mentions this fear for her son in her journal, speaking about the excitement Archer gets from interaction with others but the inability to initiate that himself:
“What friendship will mean for Archer as he grows older, I don't know. For now, it's enough that he knows that there is someone who takes care of him, someone who will seek him out for whatever reason. He barely speaks to other children or meets their eyes, although the light in his face when other children speak to him is overwhelming (Bowman, 8-28-07).”
America has evolved into a society that focuses more on the individual needs rather than the community as a unit in the day-to-day grind. For being such an individualistic society, however, we very much value conformity and “norms.” We have our image of the ideal person. We’ve set our limited range of acceptance for lifestyle and personality. To deviate too far from that norm removes you from the throes of society and forces the unlucky different to the very edge of contact and a sense of belonging. Thankfully, there is a continuum for this “edge.” Those who are different can become the standard, those who we look up to, aspire to be. Unfortunately, the other end is more common. These are the ones who receive looks of disdain or unease, are avoided in public, and often have only a few friends, if any. The socially awkward adult. The extreme nerd in high school or the kid obsessed with only one subject. The kid that won’t talk to others or the neighbor next door whose interests are too eccentric. Sadly, there is often more genius and ability at this end of the spectrum than the world will likely have the opportunity to know. We are too afraid of “different” and what it might mean.
“Archer's making great progress, but I get most excited when he's able to connect what other people are talking about (or a story in a book) to something that's already slotted into meaning in his life. He may not be focusing on the piece of information that's significant in my world, but he's attending enough to my world to want to build a bridge between the two. And he's got to start where he is -- with his numbers, times, mazes, and complicated processes for transforming them into each other -- and find a way to translate. When that happens, I see his joy. Another piece has fallen into place for him, and he loves more than anything that sense of the world organizing itself from chaos to meaning. My greatest hope for him is that he finds a way to live in the details he loves ... I have confidence that he can negotiate enough of our world to make his way into and out of those details as required, but I'd rather that he be able to work inside the world that makes the most sense to him, and not have to spend most of his waking hours translating in a foreign land (Bowman, 8-13-07).”
Works Cited
Bowman, Donna. Union, Trueheart and Courtesy. http://uniontrueheart.blogspot.com/**
Folstein, Susan E. Autism. International Review of Psychiatry, 11 269-277. 2001
Halgin, Richard P. & Whitbourne, Susan Krauss. Abnormal Psychology. Clinical Perspectives on Psychological Disorders (5th Ed.) New York, NY: 2007
Lund, Stein K. & Pelios, Lillian V. A Selective Overview of Issues on Classification, Causation, and Early Intensive Behavioral Intervention for Autism. Behavior Modification, 25, No. 5, 678-697. 2001
**All material drawn from journal entries were used with permission from the author. Dates of entries used are in citations.
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