“We were meant to ride together above the crowd. People look at us, they admire us, know we are different, but they cannot be like us.”.
(from “To my Young Autistic Son at the Fair, Poems From the Heart, Rochelle, Sandy.)
According to the Autism Society of America (ASA), “autism is a complex develop disability that typically appears during the first three years of life” Autism results from a neurological disorder that affects the functioning of the brain. In spite of the tact that was find described in 1944, it wasn’t officially recognized for research purposes mil 1994 As a result of this recognition, much research has ultimately followed. Statistic reflect that 75 percent of autistic children have some amount of mental retardation, and one found have epilepsy. Them in a genuine likelihood of mislabeling, especially in the case of a child demonstrating indeterminate symptoms.
The Center for Disease Control and Prevention (1997) asserts that autism and its affiliated behavior may occur in as many as I in 500 individuals. The Center also notes that this condition is manifesting in far greater numbers in specified sections of the US and the UK. No known reasons exist for the current upsurge in these clusters. There is only speculation.
The ASA reveals autism is now more common than childhood cancer, diabetes, or Down’s syndrome. Statis tics reflect that it is four times more pervasive in boys than in girls. There are no racial, ethnic or social constraints. Additionally, income, lifestyle and educational levels do not appear to affect the probability of its occurrence. Each individual possesses his or her own exceptional characteristics, meaning that the condition can range from near-normal functioning, to being completely uncommunicative and severely mentally retard ed. Generally, autism is considered to be an incurable condition. However, researchers believe that with consistent family support and applicable treatments, individuals can show significant improvement. In some cases, people with this condition can move on to lead comparatively normal lives.
Autism’s New Face,’ a recent article written by Washington Post staff writer David Brown, discusses new revelations that change traditional perceptions of autism. He states that autism. “a disorder marked by social isolation, uncommunicativeness, and strange repetitive behaviors, once had a different face.” According to Brown, society once perceived those with autism as being “mute, endlessly rocking residents of hospital backwards, or the near mythical idiot savants’ equally withdrawn but possessed of some rare talent.”
The ASA was organized to serve as a supportive tool for families with an autistic member, and to educate to public about the vast spectrum of this condition in terms of helping society move beyond the traditional perception of the autistic individual. As a parent advocate group comprising 24,000 members, the ASA mission is “to promote lifelong access and opportunities for per sons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism.”
Based in Bethesda, Maryland, the ASA’s also lobbies Congress for on-going funding for more extensive research investigations by the federal Centers for Dis ease Control and Prevention and the National Institutes of Health (NIH). According to the ASA, autism funding is diffused among many federal entities. One of these entities is the National Institute of Mental Health, which is only one of several NIH institutes that supports autism research. Its funding for autism research increased from $8.7 million in fiscal 1997 to $9.6 million in fiscal 1998.
Autism awareness progressed slowly up until 1994. My very first encounter with autism occurred during my college days at Franklin Pierce College, a small liberal arts school located at the foot of the White Mountains in New Hampshire. Unbeknownst to me, one of my fellow students was a high-functioning autistic. The students regarded her as somewhat different or eccentric. I’m sure none of us realized she was autistic, for at that time the spectrum was extremely narrow and very little was known about the condition. Although this student displayed many of the symptoms that are characteristic of the autistic individual, she communicated in a highly expressive and articulate manner. Like many others, we were unknowledgeable and naïve about autism. We never had a clue. The student’s name was Temple Grandin, and today Dr. Grandin is one of the foremost experts on the topic of autism, and a leading advocate in support of autism research and education. In addition, she is world renowned as a designer of innovative, humane livestock equipment.
In his article “Temple Grandin’s Hug Machine,” Stephen M. Edelson describes Grandin as an adult with autism who has written two books about her life: Emergence Labeled Autistic and Thinking in Pictures. According to Edelson, Grandin goes into great detail recounting the severe anxiety she experienced throughout her life. She unearthed a new approach to the debilitating effects of her agonizing anomie. The method she developed, deep pressure, significantly curtailed her anxiety.
Edelson relates how Grandin, as a child, implored any form of deep pressure that would help allay her anxiety. This compression might manifest through the act of crawling under sofa cushions, or by wrapping herself up in layers of blankets. She was never able to receive this calming effect from people.
As a teenager, Grandin observed how cattle were placed in a squeeze chute before being branded. This approach immediately calmed the cattle down when the pressure was applied. Based on this concept, she created a device known as a Hug Box. Edelson states that according to Grandin. this innovation is create with two padded side boards. They are hinged close to the bottom, where they form a V shape. The participator would then lie down or squat inside the V shaped area. By using a lever-type instrument, the participator grips an air cylinder. The sideboards then react by pushing together, which provides deep pressure stimulation evenly across the lateral parts of the body. Grandin still utilizes her “hug box” on a consistent basis. It continues to allow her the means to manage her on-going anxiety.
Autism, Asperger’s, and Pervasive Development Disorder (PDD) are developmental disabilities. Many of the same characteristics are inter woven amidst these three disorders. These conditions usually manifest by age three, and the child’s ability to communicate, understand language, play, and relate to others is greatly influenced by this neurological disorder. Asperger’s syndrome (AS), manifests itself in various ways according to the individual. However, many “aspies” have a good functional memory and intense focus capabilities. Socialization is still an enigma for the “aspie.”
According to experts, many persons with AS are diagnosed very late. Since there are often few or no visible signs, they frequently are not diagnosed at all. “Odd,” or “slightly eccentric,” or “cold,” or “cruel” are just some of the terms used to describe “aspies.” They can be over achievers and have successful careers. However, an “aspie” will rarely experience success in social settings, as this presents a tremendous amount of discomfort for the individual. Leading a happy, married life is not uncommon among aspies.” They do not always experience emotions as others do, however, and perceive different emotions for different circumstances. An “aspie” might experience overly intense emotion over a situation that might seem minor to non-autistics.
Dr. Grandin is categorized as having Asperger’s Syn drome, and defines this as “a high functioning autism where the person has normal or near normal speech development.” She states that she does experience emotions. As a youngster, she was teased shamelessly by her schoolmates, and was very hurt and upset by this harsh treatment. As an adult, Grandin made a concerted effort to focus on her career of designing livestock equipment. In her own words, ‘when a facility I design pleases a client. I am happy.” This is a way of funneling the pain through positive application.
Grandin states that it is essential to disengage the uncertainties of social interaction impasses from emotions, She agrees with Asperger (1952) when he stated that normal children learn social skills instinctively. She’s convinced that people with autism desire emotional contact with others, yet are frustrated by complex social interaction. She again refers to Asperger (1952), when he states that in people with autism, “social adaptation has to proceed via intellect.” In other words, everything is learned through intellect. Grandin recalls her own experiences when she states, “I had to learn social interaction skills by using my intellect. I was like a visitor from another planet who has to learn the strange ways of the aliens. I make social decisions based on logic. Memories of past experiences are also used in the equation.”
In terms of emotions, Grandin states that her feelings manifest when important people in her life have died. Sad movies and animal abuse are two instances that often bring tears to her eyes. As an autistic individual, she reveals that she may react differently to situations through her emotions, and views herself as using reasoning skills rather than reverting to emotion. She acknowledges that most people have a hard time using this approach, and explains that her emotions are quite intense during the actual experience. Grandin claims that she is able to retrieve all memories, and that no memories are repressed due to emotional content.
Grandin notes that she thinks in terms of pictures. She is not able to think in words. Her approach to designing livestock systems is accomplished through imagining herself as an animal. She goes as far as to become “one” with the animal’s body shape and senses. She then imagines herself going through one of her systems as the ani mal. In this way, she can actually imagine how the animal would feel. if in fact it knew its impending status. Creating this imaginary symbiotic relationship with the animal allows her to create a comfort level for the animal that ensures no fear. Her creations manifest through visual imagery.
Autism is an extremely rare neurological disorder with no definitive source or cure. Since there is no adequate treatment for those burdened by this condition have only one option according to Grandin-learning to cope with the malady itself. According to Webster, Konstantareas, Oxman, & Mack, (1980), although autism coexists with other disorders, i.e.. retardation and epilepsy, they are not interchangeable. Experts agree that children who have autism can have normal IQ’s. However, what makes them distinguishable from others is that they do not have the ability to discern a foreboding situation from lightheartedness. Autistic individuals, conventionally, are viewed as shortsighted when it comes to the existence of others. Although the autistic individual has often been characterized a ‘void, new approaches to this condition are transforming, however slowly, the traditional view of the vacant existence perceived by society.
Autism now involves a greater population since the spectrum of this condition has expanded, and many have symptoms that are mild and treatable. However, these symptoms are not, as yet, curable. Brown provides some extraordinary statistics concerning the present status of…autism: “Nationally, the number of children and teenagers labeled autistic rose from 23,000 six years ago to 54,000 in the last school year. In Maryland, the number of special education students served through public schools has more that doubled from 697 in the 1995-96 school year to 1,880 in the current one. In Virginia, the number doubled in six years to 1,521 in 1998-1999, the last year for which data are available.” These figures prove that, in no uncertain terms, there are more identified autistic children. than ever.
There is some concern among experts that environmental toxins or childhood vaccines are causing the increase in the autistic population. Another school of thought claims that the volume of children diagnosed with autism is rising. Children previously labeled with other disabilities (including those misdiagnosed) are now being diagnosed correctly, and are being placed in the proper category. Experts would consider it a positive turn of events if this growth within the autistic population were the result of a more expansive and comprehensive clarification. Increased ability to recognize and diagnose autism is a tremendous boost to a new trend regarding the status. of this condition. Such insights contribute to efforts underway to focus more attention on the plight of autistic children.
Brown claims that two years ago, the country’s first official surveillance program for autism, in metropolitan Atlanta, was established by the federal Centers for Dis ease Control and Prevention. Furthermore, the California State health department presented the following statistics: “the number of autistic children had tripled between 1987 and 1998 and that the continuing upward trend will require new and abundant resources. There is some question regarding the safety of childhood vac cines.” The Department of Education statistics reflect that approximately 80 percent of autistic children show symptoms at birth. The others develop normally, and regress later. Doctors believe that these are the cases that are environmentally associated.
“Battling Autism,” Alexandra Rocky Fleming’s article published in the Washington Times (October 24,1999) highlights a five-year-old boy by the name of Geoffrey. According to Fleming, “he likes sameness, continuity and order.” He’s been diagnosed with pervasive development disorder (PDD). According to Fleming, PDD is a wide-ranging title for a “category of conditions characterized by impairment in several areas of development.”
Fleming maintains that critics support early intervention as a critical approach to success. She claims that some treatments include special diets and vitamin supplements, and they all center on luring the ‘child with autism’ from his or her convergence. According to Fleming Geoffrey’s parents employ a specific therapy at home, which is a modified version of a method called “floor time.” A Bethesda, Md., psychiatrist, Dr. Stanley Greenspan, made this approach famous. An example of this might be when Geoffrey’s mom sits down on the floor and plays train with Geoffrey. According to his mom, “at first you have to get the child to look at you and focus on what you’re doing, so mom might say ‘I have trains, let’s play.” He’s looking out the window, and saying ‘there’s a fire truck.’ You’re continuing, saying, ‘oh, look at these fun trains. At the beginning, even sitting down on the floor for five minutes is emotionally draining. Through the committed efforts of his family, therapists, and teachers, Geoffrey has learned to maintain eye contact and engage in purposeful communication.” (Fleming)
Fleming notes a Hollywood producer named Jonathan Shestack, whose son, age 7, is severely affected. Shestack believes in research, in hopes of finding a cure. He is the co-founder of Cure Autism Now (CAN). The primary purpose of this organization is to fund and pro mote research on the disorder. CAN is responsible for organizing and activating the Autism Genetic Research Exchange (AGRE). According to Fleming, this is “the first collaborative gene bank established for medical research.” A spokesman for CAN has stated that they are 5 years away from a cure. Many do not agree with this projection, stating that the cause must first be determined. Nonetheless, more is being accomplished in the field than ever before.
Anthony Edward ís, best known for his role on the TV drama E.R., testimony to the Senate, on September 14. 1999, supported the Advancement in Pediatric Autism Research Act. He spoke on behalf of the 400,000 families in the US. In particular, he spoke for the families affected by autism through the Cure Autism Now (CAN) Foundation. He stated that half of autistic children will never learn to talk, adding that they will never live normal lives, and will most likely be placed in some type of institution or group home at some point Edwards stated that there are many more families affect ed by autism than realized.
Edwards spoke of a mother’s reaction to her son’s autism: “sometime before her son’s second birth day, someone crept into her house and took her precious baby’s mind and personality and left his bewildered body behind.” In his plea for continued and increased research, Edwards presented an analogy concerning the number of autistic children who have been identified in the US: “If one in five hundred kids were actually being abducted in the United States, it would be a national emergency and so should this be.” He noted that in the 1950’s, when scientists began reporting autism, they blamed this condition on bad parenting, trauma, and “refrigerator mothers.” According to Edwards, parents reacted to these accusations, and were tainted by these statements. As a result, parents lost their motivation, and little research was accomplished. Edwards states: “a generation of children was lost to medical progress,” and goes on to say that five years earlier his friends watched in horror as their son seemed to deteriorate before their very eyes. In Edward’s words
“They turned to the medical establishment. The doctors said, ‘Oh don’t worry about it, he’s a boy, they talk later. Oh he’ll grow out of it. Six months and five different specialists later someone finally said he probably has autism. They asked, what should we do?’ And the doctor said, “There’s nothing to do. They were told, Hold on to each other and cry and then move on with your lives. That was it. No hope, no advice, just ignorance. They didn’t accept that answer. They explored every therapy, every theory, every miracle cure, everything you would do for your child. When those weren’t working, they said well there must be something new, some cutting edge research. But it simply didn’t exist.”
The Advancement in Pediatric Autism Research Act supports the creation of sites where families can go for diagnosis and clinical care. The best scientists in the world would have access to these families. This structure, according to Edwards, encourages scientists to work collaboratively. This would include the sharing of information and treatment formalities. This model worked in childhood leukemia, and as new innovations were unearthed, analyzed, substantiated, and cultivated, results reflected a survival rate for pediatric leukemia as having risen from 20 percent to 80 percent.
Joetta L. Sack, in Education Week’s October 20th issue, states that the U.S. Department of Education statistics display an almost 120 percent rise in the volume of students ages 6 to 21, who have been diagnosed as autistic over a current 4 year period. In addition, during this same time period, the entire student population identified with disabilities increased only 13 percent.
According to a recent paper prepared by two British epidemiologists, “the skyrocketing numbers being seen by US public school systems actually may fall within the range predicted by some European studies. They used 91 per 10,000 as the prevalence of children who meet, or just miss, the definition of an ‘autism spectrum’ disorder. Although this is an extremely liberal estimate, the current enrollment of autistic children in California, the state with some of the best and most alarming data, is still smaller than the British study would predict.”
Sack sites a British researcher who, in 1998, reported on 12 autistic children with intestinal problems. This research reflected speculatively that “the childhood vac cine that contains weakened measles, mumps, and rubella viruses caused a low-grade infection the decreased the children’s absorption of nutrients, which led to their disability”
Here in the United States, the federal agency for Toxic Substances and Disease Registry recently completed a study of Brick Township, NJ. This is a community located north of Atlantic City, that has revealed a ram pant childhood prevalence of autism. It is reported to be 1 in 200. Although the statement will not be made public until late spring, it is believed that the water system meets the state and federal purity standards.
Sack notes that experts also believe that genetic susceptibility plays a huge role in determining who develops autism. She presents an example showing that if one child in a set of identical twins is autistic, then there’s an 80 percent chance that the second child will also be autistic. She adds that the siblings of autistic children have approximately a 5 percent probability of developing some autistic disorder. The chances of this occurring are greater because of the presence of autism in the gene pool.
It’s important for parents to be cognizant of symptoms. According to Gillberg & Steffenberg. (1993), the symptoms for autism are usually noticeable by the ages of 2-4 years of age. These symptoms include some of the classic indicators: isolation from social settings, which entails avoiding contact with all people; repetitive acts, which involves the same basic actions over and over (repeated body movements such as hand-flapping, rocking, an odd attraction to repetitive behavior which includes twirling endlessly or being fascinated by a specific sound, etc.); and communication deficits, which appear to be the most serious as they stymie the ability to communicate through the use of language.
The appearance of being mute or deaf is common among autistic children, and those who do speak tend to restate or mimic words and phrases that they have heard from others. Much of this “repeating” is presented in a rambling-type format, without paying any attention to the meaning. According to experts, autistic children may have chronic problems “rambling” throughout their lives. Alternatively, statistics uncover that approximately 50 percent of all children with autism never develop speech or language skills. Individuals diagnosed with autism may exhibit unusual responses to people, or attachments to objects. They might also demonstrate resistance to changes in routines. Individuals may also experience extreme sensitivities in the five senses of sight, hearing, touch, smell, and taste
Deslauriers & Carlson (1969), state that some may display anomalous behavior, ie, echolalia, meaning that the individual echoes what he or she just heard from another person. “Pronominal reversals” is another abnormality which displays some confusion with pro nouns, ie, using “you” instead of “P”. There may be an occasional overreaction to sound, and the individual may display unusual eating behaviors. Another factor that plays a major part in autistic children having pro found difficulties in speech is in the area of hearing deficits.
A group of students from Westminster College, UK, through a collaborative assignment, designed a course entitled Exceptional Children. They discovered a factor that plays a major part in autistic children having pro found difficulties in speech; the factor is “hearing deficits.” According to Leckman (1994), many autistic children have been shown to have lesions in their auditory pathways, indicating that deafness is clearly a neurobiological finding associated with autism. Leekman concludes that autism and deafness come “hand-in hand,” more often than by luck or chance. Many factors in considered in deaf children are likely to cause autism. These factors are often rare and unpredictable.
The Westminster students discuss the type of treatment that is accessible to autistic children. Today there is a controversial mechanism that could very well open doors to better communication for the autistic child. This tool was first developed by Sapiro (1992), and is referred to as “facilitated communication” (Sapiro, 1992). This method can be described as a means of communicating, via the instrumentality of computers. This approach, according to experts, is quite effective for disabled people. The method requires the following a keyboard and human sensibility. According to the Westminster students, “the ‘facilitator’ holds the subject’s hand, and lightly guides it over the keyboard. For reasons not understood, this gentle assistance seems to allow children to type out thoughts and feelings that they otherwise cannot express.” The students state that the results of this technique can easily challenge the traditionally accepted view that people with autism are incapable of emotion or abstract thought.
Through their research, the Westminster students report ed that there are many advances taking place outside the periphery of technology. One illustration might be through the teaching of sign language. A child does not have to be deaf in order to impressively communicate through language by using “sign.” It is known to work very effectively with autistic children, yet there appears to be no substantiated proof as to why this is so.
According to Delores Evans, an educational specialist and director of Learning Strategies, Inc., “autism is a developmental disorder with severe distortions of social and language development that begin at an early age Learning Strategies, Inc. las found the LOVAAS Program to be most effective and successful.”
This approach was developed by Dr Ivar Lovaas whose work is celebrated, widely acclaimed, and success fully performed world-wide According to Evans, “it is a comprehensive approach to basic life lessons that is based on behaviorism.” Its value impacts on many areas of a child’s life. This applied behavioral analysis (ABA) uses positive reinforcement as a principle tool. Although this approach is used in various fields that address challenged children, it appears to be most influential within the field of autism.
Education is essential for parents and diagnosticians. The autistic student has a particular problem within the high school environment. The problem seems to occur with the flexible sched ule and large classes. Due to parental-pressure school districts are beginning to pay more attention to the needs of the autistic student. The trend is to mainstream many of these students into the regular classroom environment, and address particular issues that require immediate attention. The education issue is being taken more seriously as the numbers of autistic children increase. A two-year study by the National Academy of Sciences’ committee on educational interventions and autism has been delegated by the federal Education Department. It will review the most recent treatments and will then establish which practices are most effective. The study began in January, 2000.
Over one-half million people in the US, today have autism or some form of pervasive developmental disorder. It is now viewed as one of the most common developmental disabilities. However, most of society, including many professionals in the medical, educational, and vocational fields, are “in the dark” about autism. The idea that autism can vary greatly in severity is a recent discovery, and helps to explain why it has been so difficult to identify this condition.
There are two bills presently pending in Congress These bills would authorize more federal funding for autism research, and would attempt to better coordinate research efforts. A general agreement on this fiscal year’s budget also contains a non-binding House resolution, urging appropriators to provide more funding for researchers. There appears to be some concern over whether or not the Individuals with Disabilities Education Act fully addresses the needs of the autistic population. For further information concerning legislation on autism, the ASA Government Affairs Committee publishes a report entitled “Washington Watch.” This report lists the leg isolation from the year in review, and new propositions, The Autism Society of America home page can be found at www.autism-society.org/
More than half of very young children with autism have brain damage and disorders which were shown in infancy. Recent indicators imply that early diagnosis and inclusive treatment can greatly improve the social functioning of autistic Working with the autistic child on a one-to-one basis appears to be the most effective method. Nonetheless, the high-functioning autistic individuals, for the most part, remain disabled in subtle of obvious ways throughout adulthood. According to experts, if autism is identified early, the individual could progress faster. It is imperative that the issue of early detection be brought to the attention of the diagnosing physicians and teachers. A major argument to be considered is the fact that the majority of physicians are not skilled at diagnosing autism. Most views of autism are still outdated, and there is a broad spectrum of autism that most of society is still not aware of. Autism advocates are concurrently striving for acknowledgment and a public awareness of these critical issues.
As the Westminster College students so eloquently avow:
“Some things come so easily-walking, chewing, reading people’s minds-that we manage them without conscious effort. We spend our walking lives reading subtle clues to people’s beliefs and intentions. Yet we hardly notice we’re doing it unless we encounter someone who can’t; someone with autism.”
by Gale Alexander Kamen
Gale Alexander Kamen is an educational consultant and educator working for the DC government.