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14.7.1 Autism Spectrum Disorder


Autism spectrum disorder, a pattern rst identied by psychiatrist Leo Kanner in 1943, is marked by extreme unresponsiveness to other people, severe communication decits, and highly rigid and repetitive behaviors, interests, and activities (APA, 2013, 2012) (see Table 14-6). These symptoms appear early in life, typically before 3 years of age. Just a decade ago, the disorder seemed to affect around 1 out of every 2,000 children. However, in recent years there has been a steady increase in the number of children diagnosed with autism spectrum disorder, and it now appears that at least 1 in 600 and perhaps as many as 1 in 88 children display this pattern (CDC, 2012; Mash & Wolfe, 2010). Mark is one such child:

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Why do many people still believe that MMR vaccine causes autism spectrum disorder, despite so much evidence to t contrary?

In retrospect [Susan, Marks mother] can recall some things that appeared odd to her. For example, she remembers thatMark never seemed to anticipate being picked up when she approached. In addition, despite Marks attachment to a pacier (he would complain if it were mislaid), he showed little interest in toys. In fact, Mark seemed to lack interest in anything. He rarely pointed to things and seemed oblivious to sounds. Mark spent much of his time repetitively tapping on tables, seeming to be lost in his own world. After his second birthday, Marks behavior began to trouble his parents. Mark, they said, would look through people or past them, but rarely at them. He could say a few words but didnt seem to understand speech. In fact, he did not even respond to his own name. Marks time was occupied examining familiar objects, which he would hold in front of his eyes while he twisted and turned them. Particularly troublesome were Marks odd movementshe would jump, ap his arms, twist his hands and ngers, and perform all sorts of facial grimaces, particularly when he was excitedand what Robert [Marks father] described as Marks rigidity. Mark would line things up in rows and scream if they were disturbed. He insisted on keeping objects in their place and would become upset whenever Susan attempted to rearrange the living room furniture. Slowly, beginning at age ve, Mark began to improve. The pronoun in the sentence was inappropriate and the sentence took the form of a question he had been asked previously, but the meaning was clear. (Wing, 1976)

Around 80 percent of all cases of autism spectrum disorder occur in boys. As many as 90 percent of children with the disorder remain signicantly disabled into adulthood. They have enormous difculty maintaining employment, performing household tasks, and leading independent lives (Hollander et al., 2011). Even the highest-functioning adults with autism typically have problems displaying closeness and empathy and have restricted interests and activities. The individuals lack of responsiveness and social reciprocityextreme aloofness, lack of interest in other people, low empathy, and inability to share attention with othershas long been considered a central feature of autism (Boyd et al., 2011; Constantino, 2011). Like Mark, children with this disorder typically do not reach for their parents during infancy. Instead they may arch their backs when they are held and appear not to recognize or care about those around them. In a similar vein, unlike other individuals of the same age, autistic children typically fail to include others in their play or to represent social experiences when they are playing; they often fail to see themselves as others see them and have no desire to imitate or be like others (Bodsh, 2011; Boyd et al., 2011). Communication problems take various forms in autism spectrum disorder. The individuals nonverbal behaviors are often at odds with their efforts at verbal communication. They may, for example, fail to use a proper tone when talking. It is also common for autistic persons to show few or no facial expressions or body gestures. In addition, a number are unable to maintain proper eye contact during interactions. Recall, for example, how Mark looked through people rather than at them. Many autistic individuals have great difculty understanding speech or using language for conversational purposes. In fact, approximately half fail to speak or develop language skills (Paul & Gilbert, 2011; Gillis & Romanczyk, 2007). Those who do talk may show rigidity and repetition in their speech. One of the most common speech peculiarities is echolalia, the exact

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echoing of phrases spoken by others. The individuals repeat the words with the same accent or inection, but with no sign of understanding or intent of communicating. Some even repeat a sentence days after they have heard it (delayed echolalia). Another speech oddity is pronominal reversal, or confusion of pronounsfor example, the use of you instead of I. When Mark was hungry, he would say, Do you want dinner? Autistic individuals also display a wide range of highly rigid and repetitive behaviors, interests, and activities that extend beyond speech patterns. Typically they become very upset at minor changes in objects, persons, or routines and resist any efforts to change their own repetitive behaviors. Mark, for example, lined things up and screamed if they were disturbed. Similarly, children with the disorder may react with tantrums if a parent wears an unfamiliar pair of glasses, a chair is moved to a different part of the room, or a word in a song is changed. Kanner (1943) labeled such reactions a perseveration of sameness. Many sufferers also become strongly attached to particular objectsplastic lids, rubber bands, buttons, water. They may collect these objects, carry them, or play with them constantly. Some are fascinated by movement and may watch spinning objects, such as fans, for hours.

What Happened to Aspergers Disorder?


Around the time that Leo Kanner rst identied autism in the early 1940s, a Viennese physician named Hans Asperger observed a similar syndrome that came to be knownfor more than half a centuryas Aspergers disorder, or Aspergers syndrome. Children with this disorder seemed to display certain autistic-like symptomssocial decits, expressiveness difculties, idiosyncratic interests, and restricted and repetitive behaviorsbut at the same time they had normal (or near normal) intellectual, adaptive, and language skills (Miller & Ozonoff, 2011; Siegel & Ficcaglia, 2006). Individuals with Aspergers disorder wanted to t in and interact with others, but their impaired social functioning made it hard for them to do so. For decades, clinicians believed that Aspergers disorder was closely related to autism. The disorder was included in past editions of the DSM and was widely diagnosed. But then, with the publication of DSM-5 in 2013, the category disappeared from sight. Where did it go? Well, the DSM-5 task force decided that it was, in fact, not a distinct disorder. It concluded that many of the cases previously diagnosed as Aspergers disorder were really cases of high-functioning autism, while other cases were patterns that did not really involve autistic-like functioning. According to DSM-5, the former individuals should now receive a diagnosis of autism spectrum disorder, whereas the latter individuals should be assigned to other categories, such as a new one called social communication disordera nonautistic disorder characterized by persistent difculties in communication, social relationships, and social responsiveness.

Disappearing Diagnosis Despite their impairments, a number of the

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individuals who received the past diagnosis of Aspergers disorder reached impressive heights. A butterfly perches on the nose of one such person, a 14-year-old boy who won a national award for activities such as playing the piano at nursing homes and raising chickens, peacocks, strawberries, and more on his familys farm in Ohio. Joshua Gunter/The Plain
Dealer/AP Photo

Similarly, the motor movements of people with this disorder may be unusual, rigid, and repetitive. Mark would jump, ap his arms, twist his hands and ngers, rock, walk on his toes, spin, and make faces. These acts are called self-stimulatory behaviors. Some autistic individuals also perform self-injurious behaviors, such as repeatedly lunging into or banging their head against a wall, pulling their hair, or biting themselves (Aman & Farmer, 2011; Farmer & Aman, 2011). The symptoms of autism spectrum disorder suggest a very disturbed and contradictory pattern of reactions to stimuli. Sometimes the individuals seem overstimulated by sights and sounds and appear to be trying to block them out (called hyper-reactivity), while at other times they seem understimulated and appear to be performing self-stimulatory actions (called hypo-reactivity). They may, for example, fail to react to loud noises yet turn around when they hear soda being poured. Similarly, they may fail to recognize that they have reached the edge of a dangerous high place yet immediately spot a small object that is out of position in their room.

What Are the Causes of Autism Spectrum Disorder?

A variety of explanations have been offered for autism spectrum disorder. Nelson/ZUMA Press/Corbis This is one disorder for which sociocultural explanations have probably been overemphasized. In fact, such explanations initially led investigators in the wrong direction. More recent work in the psychological and biological spheres has persuaded clinical theorists that cognitive limitations and brain abnormalities are the primary causes of this disorder. SOCIOCULTURAL CAUSES At rst, theorists thought that family dysfunction and social stress were the primary causes of autism spectrum disorder. When he rst identied this disorder, for example, Kanner argued that particular personality characteristics of the parents created an unfavorable climate for development and contributed to the disorder (Kanner, 1954, 1943). He saw these parents as very intelligent yet coldrefrigerator parents. These claims had enormous inuence on the public and on the self-image of the parents themselves, but research has totally failed to support a picture of rigid, cold, rejecting, or disturbed parents (Vierck & Silverman, 2011; Jones & Jordan, 2008). Similarly, some clinical theorists have proposed that a high degree of social and environmental stress is a factor in the disorder. Once again, however, research has not supported this notion. Investigators who have compared autistic children to nonautistic children have found no differences in the rate of parental death, divorce, separation, nancial problems, or environmental stimulation (Landrigan, 2011; Cox et al., 1975). PSYCHOLOGICAL CAUSES According to certain theorists, people with autism spectrum disorder have a central perceptual or cognitive disturbance that makes normal communication and interactions impossible. One inuential explanation holds that individuals with the disorder fail to develop a theory of mindan awareness that other people base their behaviors on their own beliefs, intentions, and other mental states, not on information that they have no way of knowing (Pisula, 2010; Frith, 2000). By 3 to 5 years of age, most normal children can take the perspective of another person into account and use it to anticipate what the person will do. In a way, they learn to read others minds. Let us say, for example, that we watch Jessica place a marble in a container and then we observe Frank move the marble to a nearby room while Jessica is taking a nap. We know that later Jessica will search rst in the container for the marble because she is not aware that Frank moved it. We know that because we take Jessicas perspective into account. A normal child would also anticipate Jessicas search correctly. An autistic child would not. He or she would expect Jessica to look in the nearby room because that is where the marble actually is. Jessicas own mental processes would be unimportant to the person. Studies show that people with autism spectrum disorder do indeed have this kind of mind-

Blocking out the world An 8-year-old child with autism spectrum disorder peers vacantly through a hole in the netting of a baseball batting cage, seemingly unaware of other chldren and activities at the playground. Robin

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blindness, although they are not the only kinds of individuals with this limitation (Pisula, 2010; Jones & Jordan, 2008). They thus have great difculty taking part in make-believe play, using language in ways that include the perspectives of others, developing relationships, or participating in human interactions. Why do autistic persons have this and other cognitive limitations? Some theorists believe that they suffered early biological problems that prevented proper cognitive development. BIOLOGICAL CAUSES For years researchers have tried to determine what biological abnormalities might cause theory-of-mind decits and the other features of autism spectrum disorder. They have not yet developed a complete biological explanation, but they have uncovered some promising leads. First, examinations of the relatives of autistic people keep suggesting a genetic factor in this disorder (Sakurai et al., 2011). The prevalence of autism among their siblings, for example, is as high as 8 per 100 (Teicher et al., 2008; Gillis & Romanczyk, 2007), a rate much higher than the general populations. Moreover, the prevalence of autism among the identical twins of autistic people is 60 percent. Some studies have also linked autism spectrum disorder to prenatal difculties or birth complications (Reichenberg et al., 2011). For example, the chances of developing the disorder are higher when the mother had rubella (German measles) during pregnancy, was exposed to toxic chemicals before or during pregnancy, or had complications during labor or delivery. Finally, researchers have identied specic biological abnormalities that may contribute to autism spectrum disorder. One line of research has pointed to the cerebellum, for example (Allen, 2011; Teicher et al., 2008; Pierce & Courchesne, 2002, 2001). Brain scans and autopsies reveal abnormal development in this brain area occurring early in the life of autistic people. Scientists have long known that the cerebellum coordinates movement in the body, but they now suspect that it also helps control a persons ability to shift attention rapidly. It may be that people whose cerebellum develops abnormally will have great difculty adjusting their level of attention, following verbal and facial cues, and making sense of social informationall key features of autism. In a similar vein, neuroimaging studies indicate that many autistic children have increased brain volume and white matter and structural abnormalities in the brains limbic system, brain stem nuclei, and amygdala (Bachevalier, 2011; Bauman, 2011). Many individuals with the disorder also experience reduced activity in the brains temporal and frontal lobes when they perform language and motor tasks (Escalante et al., 2003). Given such ndings, many researchers believe that autism spectrum disorder may in fact have multiple biological causes (Hollander et al., 2011). Perhaps each of the relevant biological factors (genetic, prenatal, birth, and postnatal) can eventually lead to a common problem in the braina nal common pathway, such as neurotransmitter abnormalities, that produces the cognitive problems and other features of the disorder.
Autistic acts When upset, some children with autism spectrum disorder, particularly those who cannot express themselves verbally, display physical outbursts. This 6-year-old child throws a tantrum and exhibits self-stimulatory hand shaking while under the care of a doctor at Bretonneau Hospital in Tours, France. Bernard Bisson/Corbis Sygma

A Special Kind of Talent


Most people are familiar with the savant syndrome, thanks to Dustin Hoffmans portrayal of a man with autism in the movie Rain Man. The savant skills that Hoffman portrayedcounting 246 toothpicks in the instant after they fall to the oor, memorizing the phone book through the Gs, and doing numerical calculations at lightning speedwere based on the astounding talents of certain real-life people who are otherwise limited by autism spectrum disorder or intellectual developmental disorder (formerly known as mental retardation). A savant (French for learned or clever) is a person with a major mental disorder or intellectual handicap who has some spectacular ability. Often these abilities are remarkable only in light of the handicap, but sometimes they are remarkable by any standard (Yewchuk, 1999). A common savant skill is calendar calculating, the ability to calculate what day of

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the week a date will fall on, such as New Years Day in 2050 (Kennedy & Squire, 2007; Heavey et al., 1999). A common musical skill such individuals may possess is the ability to play a piece of classical music awlessly from memory after hearing it only once. Other individuals can paint exact replicas of scenes they saw years ago (Hou et al., 2000). Some theorists believe that savant skills do indeed represent special forms of cognitive functioning; others propose that the skills are merely a positive side to certain cognitive decits (Scheuffgen et al., 2000; Miller, 1999). Special memorization skills, for example, may be facilitated by the very narrow and intense focus often found in cases of autism spectrum disorder.

Special insights One of the worlds highest achieving autistic individuals is Dr. Temple Grandin, a professor at Colorado State University. Applying her personal perspective and unique visualization skills, she has developed insight into the minds and sensitivities of cattle and has designed more humane animal-handling equipment and facilities. Indeed, she argues that autistic savants and animals share cognitive similarities. Imke Lass/Redux

Finally, because it has received so much attention over the past 15 years, it is worth examining a biological explanation for autism spectrum disorder that has not been borne outthe MMR vaccine theory. In 1998 a team of investigators published a study suggesting that a postnatal eventthe vaccine for measles, mumps, and rubella (MMR vaccine)might produce autistic symptoms in some children (Wakeeld et al., 1998). Specically, the researchers held that for certain children, this vaccine, which is usually given between the ages of 12 and 15 months, produces an increase in the measles virus throughout the body which in turn causes the onset of a powerful stomach disease and, ultimately, autism spectrum disorder. However, virtually all research conducted since 1998 has argued against this theory (Ahearn, 2010; Uchiyama et al., 2007; Chen et al., 2004). First, epidemiological studies repeatedly have found that children throughout the world who receive the MMR vaccine have the same prevalence of autism as those who do not receive the vaccine. Second, according to research, children with autism do not have more measles viruses in their bodies than children without autism. Third, autistic children do not have the special stomach disease proposed by this theory. Finally, careful reexaminations of the original study have indicated that it was methodologically awed and, perhaps, manipulated and that it, in fact, failed to demonstrate any relationship between the MMR vaccine and the development of autism spectrum disorder (Lancet, 2010). Unfortunately, despite this clear refutation, many concerned parents now choose to withhold the MMR vaccine from their young children, leaving them highly vulnerable to diseases that can be very dangerous.

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How Do Clinicians and Educators Treat Autism Spectrum Disorder?


Treatment can help people with autism spectrum disorder adapt better to their environment, although no treatment yet known totally reverses the autistic pattern. Treatments of particular help are cognitive-behavioral therapy, communication training, parent training, and community integration. In addition, psychotropic drugs and certain vitamins have sometimes helped when combined with other approaches (Ristow et al., 2011; Hellings et al., 2010; Shaw & Dawkins, 2010). COGNITIVE-BEHAVIORAL THERAPY Behavioral approaches have been used in cases of autism for more than 35 years to teach new, appropriate behaviors, including speech, social skills, classroom skills, and self-help skills, while reducing negative, dysfunctional ones. Most often, the therapists use modeling and operant conditioning. In modeling, they demonstrate a desired behavior and guide autistic individuals to imitate it. In operant conditioning, they reinforce desired behaviors, rst by shaping thembreaking them down so they can be learned step by stepand then rewarding each step clearly and consistently. With careful planning and execution, these procedures often produce new, more functional behaviors. A pioneering, long-term study compared the progress of two groups of children with autism spectrum disorder (Lovaas, 2003, 1987; McEachin et al., 1993). Nineteen received intensive behavioral treatments, and 19 served as a control group. The treatment began when the children were 3 years old and continued until they were 7. By the age of 7, the behavioral group was doing better in school and scoring higher on intelligence tests than the control group. Many were able to go to school in regular classrooms. The gains continued into the research participants teenage years. Given the favorable ndings of this and similar studies, many clinicians now consider early behavioral programs to be the preferred treatment for autism spectrum disorder (Peters-Scheffer et al., 2011; Soorya et al., 2011). One behavioral program that has achieved considerable success is the Learning ExperiencesAn Alternative Program (LEAP) for preschoolers with autism (Kohler et al., 2005). In this program, 4 autistic children are integrated with 10 normal children in a classroom. The normal children learn how to use modeling and operant conditioning in order to help teach social, communication, play, and other skills to the autistic children. The program has been found to improve signicantly the cognitive functioning of autistic children, as well as their social and peer interactions, play behaviors, and other behaviors. Moreover, the normal children in the classroom experience no negative effects as a result of serving as intervention agents. As such programs suggest, therapies for people with autism spectrum disorder, particularly behavioral ones, tend to provide the most benet when they are started early in the childrens lives (Carter et al., 2011; Magiati et al., 2011). Very young autistic children often begin with services at home, but ideally, by the age of 3 they attend special programs outside the home. A federal law lists autism spectrum disorder as 1 of 10 disorders for which school districts must provide a free education from birth to age 22, in the least restrictive or most appropriate setting possible. Typically, services are provided by education, health, or social service agencies until the children reach 3 years of age; then the department of education for each state determines what services will be offered.
Early intervention This child with autism spectrum disorder waves as he follows the instructions on a motion exercise DVD. Formally diagnosed at 18 months, he was able to begin intensive behavioral therapy before the age of 2. Early assessment and treatment appear to improve the prognosis of individuals with this disorder. AP Photo/Rich Pedroncelli

Given the recent increases in the prevalence of autism spectrum disorder, many school districts are now trying to provide education and training for autistic children in special classes that operate at the districts own facilities (Wilczynski et al., 2011). However, most school districts remain ill-equipped to meet the profound needs of students with this disorder. The most fortunate autistic students are sent by their school districts to attend special schools, where education and therapy are combined. At such schools, specially trained teachers help the children improve their skills, behaviors, and interactions with the world. Higher-functioning autistic students may eventually spend at least part of their school day returning to normal classrooms in their own school district (Hartford & Marcus, 2011; Smith et al., 2002). COMMUNICATION TRAINING Even when given intensive behavioral treatment, half of the people with autism spectrum disorder remain speechless. As a result, they are often taught other forms of communication, including sign language and simultaneous communication, a method combining sign language and speech. They may also learn to use augmentative communication systems, such as communication boards or computers that use pictures,

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symbols, or written words to represent objects or needs (Prelock et al., 2011; Ramdoss et al., 2011). A child may point to a picture of a fork to give the message I am hungry, for example, or point to a radio for I want music. Some programs now use child-initiated interactions to help improve the communication skills of autistic children (Koegel et al., 2010, 2005). In such programs, teachers try to identify intrinsic reinforcers rather than trivial ones like food or candy. The children are rst encouraged to choose items that they are interested in, and they then learn to initiate questions (Whats that? Where is it? Whose is it?) in order to obtain the items. Studies nd that child-directed interventions of this kind often increase self-initiated communications, language development, and social participation (Koegel et al., 2010, 2005). PARENT TRAINING Todays treatment programs for autism spectrum disorder involve parents in a variety of ways. Behavioral programs, for example, often train parents so that they can apply behavioral techniques at home (Hollander et al., 2011; Schreibman & Koegel, 2005). Instruction manuals for parents and home visits by teachers and other professionals are typically included in such programs. Research consistently has demonstrated that the behavioral gains produced by trained parents are often equal to or greater than those generated by teachers.
Learning to communicate Behaviorists have had success teaching many children with autism spectrum disorder to communicate. Here a speech language specialist combines behavioral techniques with the use of a communication board to teach a 3-year-old autistic child how to express herself better and understand others. AP Photo/Albuquerque Journal, Pat
Vasquez-Cunningham

In addition to parent-training programs, individual therapy and support groups are becoming more available to help the parents of autistic children deal with their own emotions and needs (Hastings, 2008). A number of parent associations and lobbies also offer emotional support and practical help. COMMUNITY INTEGRATION Many of todays school-based and home-based programs for autism spectrum disorder teach self-help, self-management, and living, social, and work skills as early as possible to help the individuals function better in their communities. In addition, greater numbers of carefully run group homes and sheltered workshops are now available for teenagers and young adults with this disorder. These and related programs help the individuals become a part of their community; they also reduce the concerns of aging parents whose children will always need supervision.

Autism Spectrum Disorder

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