CHILDHOOD AUTISM AND BENEFITS OF DIFFERENT THERAPY TYPES
by
Amy L. Hanson
A SENIOR THESIS
m
GENERAL STUDIES
Submitted to the General Studies Council in the College of Arts and Sciences at Texas Tech University in Partial fulfillment of the Requirements for the Degree of
BACHELOR OF GENERAL STUDIES
Approved
'JSROf:ESSOR JOYCE ARTERBURN Department of Exercise and Sports Sciences Chairperson of Thesis Corum ittee
PROfESSOR LAURA BORCHARDT Department of Exercise and Sports Sciences
PROFESSOR VINCE LEMBO Department of Psychology Tarrant County College
Accepted
PROFESSoR MitHAEL SCHOENECKE Director of General Studies
AUGUST 2001 -"fl ~oot ACKNO~EDGEMENTS tlO·IJ C , ;;._.. I would like to thank my thesis committee, Professors Joyce Arterburn, Laura
Borschardt, and Vincent Lambo, and Director of General Studies. Michael Schoenecke.
for all their support, enthusiasm, and kindness. Without their understanding and belief in
me, I could not have completed my thesis. In addition to my committee and director. I
also want to acknowledge my family and friends who continually supported me with their
understanding and fellowship during the period in which this thesis was written .
.. 11 TABLE OF CONTENTS .. ACKNOWLEDGEMENTS ·························································································· 11 CHAPTER
I. INTRODUCTION TO AUTISM I
Disordered Language ...... 3
Social Impairment ...... 4
Social Awkwardness ...... 5
Repertoire of Unusual Behaviors ...... 5
Abnormal Cerebellum ...... 6
Autistic Savant ...... 7
II. MEDICAL AND NONMEDICAL APPROACHES TO AUTISM ...... 8
Theory of Mind ...... 8
Lateral Pressure Equipment ...... 9
The TEACCH Method ...... 11
Applied Behavior Analysis ...... 14
Medication ...... 16
Vitamin B6 and Magnesium ...... 17
Secretin ...... 19
Melatonin ...... 20
III. SENSORY INTEGRATION DYSFUNCTION ...... 22
The Tactile System ...... 23
The Vestibular System ...... 23
The Proprioceptive System ...... 24
Ill Sensory Adventure Camp ...... 25
Sensory Integration Training ...... 26
Auditory Integration Training ...... 27
IV. CONCLUSION ...... ~9
Early Intervention ...... 29
Treatments ...... 31
REFERENCES ...... 33
IV CHAPTER I
INTRODUCTION TO AUTISM
Autism is a neurobiological disorder that affects over 400,000 Americans.
Autistic people have many deficits, typically in the areas of physical, social. and language skills. Leo Kanner coined the term "autism" in 1943 from the Latin word "aut." meaning self, because these people, specifically children, seemed to be excessively preoccupied and withdrawn. To this day, the cause of autism is unknown, but researchers are gaining knowledge that helps them better understand the consequences of this debilitating condition and how they can help those who are affected by it. Two years ago, there were four to five documented cases of autism out of every 10,000 live births. Now, the newest information published in 2000 states that there are as many as 45 to 60 cases out of
10,000 live births (Autism, 2001 ). The difference in these numbers is staggering.
Several theories attempt to explain the dramatic increase in numbers. The increased awareness of childhood disorders is one theory. Another theory that causes much concern is that autism may be a result of the increased number of vaccines-many of which contain mercury as a preservative-administered to children. Although this has not been proven, the FDA has moved to eliminate the use of mercury in vaccines
(Autism, 2001 ). With no cure and no prenatal test for autism, there is no immediate hope of eliminating this condition. Continued research concerning the best way to teach autistic children, and continued scientific research concerning possible treatments for autism, are the greatest hope for dealing with the effects of this profound developmental problem.
I Of those labeled autistic, 80% are also classified as mentally retarded. Many characteristics differentiate an autistic person from a person who is only diagnosed with mental retardation. There is a greater likelihood that the autistic person shows awkward mannerisms, postures, and habits. Behaviors such as hand-flapping, rocking. strange food preferences, lack of eye contact, and insensitivity to pain may be evident in the autistic child, and some children frequently display self-injurious behaviors. Autistic children may also take great interest in inanimate objects, especially mechanical devices and appliances. In addition, they also display abnormal play behaviors, which will be discussed in detail later.
Autism affects three times as many boys as girls. Frequently. this disorder is present at birth and in early infancy, but in all cases it becomes evident within the first 30 months of life. The first sign of autism in infants is a tendency to be indifferent towards affection and physical contact. Some infants will even arch their backs when held or cry until they are put down. Parents may also suspect something is wrong by the age of 2 when speech patterns generally develop. At this time, parents may notice that speech is abnormal, slow, or nonexistent. Psychologists may label an autistic child with the term
"Pervasive Developmental Disorder" (PDD), which covers a spectrum of disorders that have some of the same characteristics such as delayed learning and communication. The extent or type of syndrome may not be evident until the child is 2 or 3. Other types of
Pervasive Developmental Disorders are Rhett's Syndrome, Asperger's Syndrome. and
Fragil X Syndrome.
2 Disordered Language
One of the defining characteristics of autism is disordered language. There may
be a replacement of speech by strange mechanical sounds. Another language charac teristic of autism is a term called "echolalia." This is when a person repeatedly uses a
word or a phrase said by others. According to Cohen and Volkmar (1997), '"echolalia
may be used when a child realizes he/she is expected to say something, but does not
know what or how to formulate it" (p. 165). When an autistic child does not know how
to formulate what he wants to say, the child tends to become irritated, and, as a result. a
negative behavior arises. "Young children with autism or PDD develop very idiosyn
cratic ways of expressing basic meanings. As a result, their behavior is incomprehensible to most people. Parents often become critical mediators between their children and the
rest of the world" (Cohen & Volkmar, 1997, p. 167). For example, a 4-year-old autistic boy chanted "rabbit, rabbit" when he wanted to watch his favorite movie Alice and
Wonderland. His mother understood what this meant since he became very excited when the rabbit appeared in the movie. Now, when the young boy wants to watch a movie, he continues to chant "rabbit" for "movie." This example clearly describes how closely experience and language are tied together with children who are affected by autism. If an autistic person does learn language, a better understanding is achieved when symbols are introduced to explain a specific act. According to Grad in ( 1999), they will use this model to interpret other similar situations and process them according to the symbols they have previously acquired.
3 Social Impairment
Another one of the key characteristics of autism is an impairment in the ability to interact socially with others. In other words, individuals with autism usually avoid all forms of social interaction. Many autistic individuals display inappropriate behaviors such as tantrumming or running away in an attempt to isolate. At one point, researchers believed that autistic-like people feared others, but recent studies have helped discount this idea. Instead. it is thought that people with autism are hypersensitive to certain sensory stimuli. For example, children with autism may cringe at the sound or pitch of a particular person's voice, or they may get terribly offended by the smell of someone· s perfume. Subtle things such as these may agitate an autistic person to the point that a behavior becomes a serious problem. (More detailed information about sensory overload will be discussed in the sensory integration section.) Autistic people also seem to be socially indifferent at times. For instance, they do not mind being around others. but at the same time they do not mind being by themselves. According to Edelson ( 1997),
"Professor Jack Panksepp at Bowling Green State University in Ohio has shown that beta-endorphins, endogenous opiate-like substances in the brain, are released in animals during social behavior" (p. 1). One theory is that people with autism do not obtain these biochemical pleasures from interacting with others. Evidence has also shown that the beta-endorphin levels of these people are elevated. This leads researchers to believe that autistic people do not rely on social interaction for pleasure. There is some research indicating that a drug called naltrexone, a beta-endorphin blocker, increases social behavior (Edelson, 1997).
4 Social Awkwardness
Individuals with autism also seem to be socially awkward. Some individuals try very hard to have friends, but they have a difficult time keeping them. Because they do not realize that others have their own thoughts, plans, and points of view, it is difficult for them to understand others, and vice versa. Temple Gradin is an adult with autism who has a Ph.D. in Animal Science and has a successful career designing livestock equipment.
She also has written two books about her life, Emergence Labeled Autistic and Thinking in Pictures. Gradin states it is possible to have social relationships, but there is a major difference in the way in which their thoughts and emotions come about, making it difficult for others to understand. For instance, when Dr. Gradin encounters a new social situation, she scans her memories for a similar situation so she can use it as a model to guide her through the new experience. Autistic people usually learn visually, so if they get a picture of what is going on they are more likely to understand and adapt their behavior accordingly (Gradin, 1999).
Repertoire of Unusual Behaviors
The last of the three defining characteristics of autism is a repertoire of unusual behaviors. This is depicted when an autistic child plays with a toy. An autistic child plans a routine with a toy and does not stray from the process he has invented. Autistic people appear to require order in even small tasks. For example, while coloring a picture. a 3-year-old autistic girl stacked colored markers by placing them lid to end and became distraught when they fall apart. Such a small change can be devastating for the child.
One of the reasons why it becomes difficult for children \Vith autism to play with others is
5 because their routine may be destroyed simply by a change in their scheduled process.
Because of the interruptions, they withdraw into their own world in an attempt to proYide themselves with order.
Abnormal Cerebellum
Research conducted by Dr. Eric Courchesne has found that autism may be linked to an abnormality in the part of the brain known as the cerebellum. The cerebellum is a large portion of the brain that is located near the brainstem and is primarily responsible for coordinating the body's movements. Recent evidence has also predicted that the cerebellum is responsible for speech, learning, emotions, and attention. Magnetic resonance imaging (MRI) has been used to study the brains of autistic individuals. In the late 1980s, Dr. Courchesne set out to prove the correlation between autism and an abnormality of the brain. With his findings, he concluded that two areas of the cerebellum (lobules VI and VII) are smaller in autistic individuals. Hypoplasia is the term used for this abnormality, and those who are identified with more extensive forms of autism have smaller portions of this area in the brain. Dr. Courchesne then set out to correlate the abnormal cerebellum and its VI and VII lobes with attention. He concluded that this malformation is responsible for an autistic person's inability to shift attention.
Edelson (1995c) reported that "if an autistic child is attending to a toy and a parent starts talking to him, it may take a few seconds before he can attend to and listen to the parent"
(p. 1). It is thought that the reduction in the size of the VI and VII lobes occurs prenatally and that it is caused by lack of oxygen, infection, and/or toxic exposure, and may be genetically transmitted.
6 Autistic Savant
According to Edelson ( 1995b), about 1Oo/o of those who have autism have a fascinating cognitive phenomenon known as .. autistic savant.., An autistic savant exhibits extraordinary cognitive skills that others can only imagine. Only 1% of the non-autistic population, including those with mental retardation, has savant abilities. There are several forms of the autistic savant. One example was illustrated in the movie Rain Man in 1989. The autistic man, Raymond, has incredible mathematical skills. This skill is portrayed in the movie when a box of toothpicks falls on the floor and, in a matter of seconds, Raymond has counted all the toothpicks in the box. Another example of a math savant is when someone can match dates with days of the week. Other autistic savants may have heightened memory and amazing artistic or musical abilities. A memory feat is when a person remembers minute details about a specific topic (e.g., the birth and death dates of a U.S. president, his term in office, names of family members, and names of cabinet members). Others who have musical and artistic abilities can see or hear some thing one time and replicate the exact piece. The reason why some people possess these strange savant abilities is unknown. Dr. Rimland, a theorist with an autistic son \vho is an art savant, believes that these individuals have an incredible ability to concentrate and can focus all their attention on one area of interest. Another common theory is that these individuals use parts of their brains that others are unable to consciously trigger.
"Admittedly, researchers in psychology feel that we will never truly understand memory and cognition until we understand the autistic savant" (Edelson, 1995b, p. 2).
7 CHAPTER II
MEDICAL AND NONMEDICAL
APPROACHES TO AUTIS!v1
Theory of Mind
"Theory of Mind" is a relatively new approach to autism. This phrase was coined
by Premack and Woodruff in 1978.
They suggested that the ability to reflect on mental states was theory-like because mental states are unobservable entities which we infer to be underlying people's actions and because references to mental states allows us to explain and predict other people's behavior with remarkable power. (Baron-Cohen & Swettenham. 1988,p. 880)
This theory refers to the idea that many autistic individuals do not understand that other
people have their own ideas, plans, emotions, and points of view. They only see and feel
their own experiences and cannot step into another person's shoes. For instance. an
autistic individual may become agitated if someone cannot answer a question. Because
they know the answer, they assume that others will as well. By not understanding the
emotions and attitudes of others, autistic individuals have problems with social relations
and communication with others. Because of this inability to relate to others. autistic people seem to be self-centered, egocentric, and uncaring.
One of the key areas that researchers, teachers, and doctors who are studying autism need to address is how to help these individuals acknowledge the thoughts and feelings of other people (Baron-Cohen & Swettenham, 1988). One of the methods used to teach children with autism is an intervention called '"short stories." developed by Carol
Gray, a consultant to students with autism. These short stories describe different
8 scenarios that allow autistic individuals to understand themselves and others. These stories may motivate them to start asking questions about other people and help them at least recognize that different individuals think in unique ways (Edelson, 1995e ). A short story consists of simple pictures and sometimes words. A teacher may create a story for a child with autism, or books that include several common situations may be purchased.
For instance, an autistic child may learn how to share by seeing a book with characters that want to play with the same toy. The book shows one character playing with a toy, then a clock with time change, and then the second character with the same toy. This way, the autistic individual sees visually how to act in this social situation. School districts have become acquainted with this idea and are using short stories to help socialize children with communication deficits.
Lateral Pressure Equipment
Temple Gradin has described her life with autism and its severe debilitating limitations, one of which is anxiety. She also goes into great detail about the benefits of direct force applied to certain areas of the body, known as deep pressure, and the invention she created that uses pressure to subside some of her anxious nerves. She states that, in her childhood, she craved deep pressure, and she obtained it by crawling between the couch cushions or wrapping herself tightly in a blanket. She was unable to get the right amount of pressure from others because they either gave her too much or not enough. While she visited some relatives who owned a farm, Temple witnessed the branding of cows. She noticed that the cattle relaxed when placed in a pressure chute.
She thought that a similar device might calm her anxiety as well. Temple Gradin then
9 constructed the "Hug Machine" or "Hug Box." This lateral pressure equipment consists of two padded sideboards that are hinged near the bottom to form a V shape. According to Edelson (1996), "the user lies down or squats inside the V. By using a le\'er, the user engages an air cylinder that pushes the sideboards together" (p. 1). This allo\vs deep pressure stimulation evenly across the body. Creedon ( 1997) reported that several programs have utilized the Hug Machine, and all report, in general, the same caln1ing effect. In fact, the Center for the Study of Autism and Willamette University collaborated to conduct a controlled placebo study in the summer of 1995. Ten autistic children who were using the deep pressure machine were studied, and the results supported the use of the machine. Tension and anxiety were clearly reduced, and tests such as the Connor's Parent Rating Scale checklist were consistent with the results. In fact, children who showed more severe signs of anxiety measured a higher reduction in the physiological anxiety response (Creedon, 1997).
There are other studies related to the use of lateral pressure equipment and children with autism. One study was a series of clinical trials conducted at the day school program run by Michael-Reese Hospital and the Medical Center Developmental Institute.
These trials were specifically set up to evaluate the equipment. Researchers wanted to know if students would consistently use the pressure machine. If the results proved positive, then they would advocate the introduction of the Hug Machine into the school setting. The first study records 16 students with autism. There were minimum standards for use of the device. The participants were between 6 and 12 years old, ranged from mild to severe levels of retardation, and were identified as tactile defensive bv an occupational therapist. Students using the lateral pressure equipment showed a
10 significant increase in the usage of the box on their "oYerall-worsC days (Creedon. 1997. p. 2).
The TEACCH Method
Treatment and Education of Autistic and Related Communication Handicapped
Children (Division TEACCH) is a program that was designed over 30 years ago by Eric
Schopler. This program provides families and those with autism and related develop mental disorders with resource options, research developments, and multi-disciplinary training. TEACCH was developed in response to those directly affected by autism and
its stresses, confusion, and frustration. When this division was developed, the widely published cause of autism was emotionless parenting that, in tum. caused some children to have schizophrenic symptoms. According to Volkmar ( 1995). this program was deter mined to classify autism as a developmental disorder caused by multiple biological processes rather than being of emotional origin.
Because autism is thought to be a brain abnormality rather than the result of a parent's emotionless bond to the child, the parents should be the agents of recovery for their children. The goal of the TEACCH program is to utilize established sen·ices to assist parents of autistic children from preschool to adulthood (Schopler. 1988).
There are eight main philosophical components to the TEACCH method. The main component is parent-professional collaboration. Because parents know their autistic children better than anyone else, they should be considered important agents in the process of their child's recovery. Professionals should collaborate with the parents by listening to them and giving appropriate feedback in return.
1 1 Improved adaptation is another goal in the TEACCH philosophy. In this. there an~ two elements that are important. One is achieved by teaching new interests and skills to those with autism. The second element of adaptation comes into play when an autism deficit gets in the way. If this occurs, accommodations should be created to change the environment that is causing problems for individuals. Assessment for individualization can be achieved by evaluating every case and treating people according to their deficit and problem areas. According to Schopler ( 1988), "the decision of when to overcome a learning problem by teaching a better skill and when to overcome it by environmental accommodations can best be reached with the use of the most appropriate diagnostic assessment" (p. 767). The assessment may be conducted through formal standardized tests or by informal careful observation made by parents and teachers.
Structured teaching is also an important element to the TEACCH method. With individualized assessment, professionals are able to create the best learning environment for each child. Skills that aid in areas of communication, social interaction, and daily living should be priorities for teaching an individual with autism. The areas that seem to be common cognitive deficits for those with autism are difficulties with organization. auditory processing, attention, and memory. Visual processing, rote memory, and special interests can help make up for the deficient areas. Learning tools such as visual structures for organization can be modified or faded-out as the child gets older.
Next, Cognitive and Behavior Theories are useful for guiding intervention and research for autism. This is important for rehabilitating those with autism and like disorders because much of the evidence comes from facts obtained through controlled experiments in the psychological areas. In the sixth component, Schopler ( 1988) stated
12 that '"the most effective treatment approach is to give priority to recognition and enhance-
ment of children's skills and to recognize and accept their deficits and shortcomings·· (p.
772). This idea leads to positive reinforcement and rewards, which are said to be the
most effective treatment approach. Autistic people's interests may be limited, but the
skills they possess may be perfected due to the ability to focus all their attention on a few
specific areas. Skill enhancement leads to feelings of competence, which motivates
autistic people and gives them a chance to find and grow from a talent or interest.
The seventh component of the TEACCH philosophy is the recognition of every
child as an individual.
By sharing a holistic approach, the TEACCH staff considers the children's aggregate skills, learning problems, deficits or weaknesses, and personal attributes-all interacting with a family. The holistic approach is taught and demonstrated with the generalist model-the expectation that every trainee. regardless of professional discipline, will become familiar with the whole range of problems occurring with autistic children, and with all the specific treatment techniques currently being experimented with or used. (Schopler, 1988, p. 77.!+)
By understanding that every autistic child has different weaknesses and strengths, family
and therapists are better able to provide the best support for that individual.
The last component of the TEACCH philosophy is lifelong community-based services for those families affected by autism who require special help from the beginning of their disabled member· s life until death. Autism involves special problems not only in social relations and communications, but also in the areas of cognition, learning, sensory processing. behavior, and organization. One of the goals stated in the
TEACCH philosophy is to help those affected by autism live more normally and productively in society. For exan1ple. communities should have work programs. workshops for learning. and social functions and get-togethers that will help families and
13 people with disabilities to socialize and learn through other people· s experiences
(Schopler, 1988).
The TEACCH philosophy is probably the most widespread program for autisn1 in the United States. There are affiliates in almost every major U.S. city. The research conducted and published benefits everyone involved. There is little concentration on adverse behavior therapies. The TEACCH method is a gentle approach liked by many teachers, parents, and students.
Applied Behavior Analysis
Nathanson (2000) writes that "Applied Behavior Analysis [ABA] is a term generated in the 1970's based on the principals of operant conditioning. In this \·iew, the vast majorities of human behaviors are operant and are controlled by principles of operant conditioning" (p. 1). With this in mind, 0. Ivan Lovaas. a researcher at the
University of California, invented ABA, a treatment approach for children with autism and like disorders. The goal of this treatment approach is to increase appropriate behavior and decrease inappropriate behavior. In general, appropriate behavior is achieved by positive reinforcement such as food, verbal praise, and gestural praise like clapping hands or a thumbs-up gesture. An inappropriate behavior may be decreased by ignoring the behavior, losing privileges, time-out, and aversive stimuli such as a strong
"NO." The guidelines for the discrete trial format are as follows:
1. Tell the child what to do.
2. Select an appropriate reinforcer for the specific child.
3. The consequences must be immediate.
14 4. The consequences must be constant.
5. Minimize opportunity for error so the child is able to be successful.
6. Gradually increase demands and decrease reinforcers.
An example of the implementation of this process is teaching a child to sit down.
The procedure for proper sitting is achieved by standing behind the child and saying ... sit
down." If the child sits. he is reinforced with verbal praise, but if the child does not
respond correctly, he receives an aversive "NO! .. and the teacher points to the chair. The
teacher repeats, ''sit down." Again, if the child complies, he is given verbal praise, but if the response is still incorrect he receives another "NO!" and is physically placed in the chair (McEachin, Smith, & Lovaas, 1993 ). Lovaas suggests that Applied Behavior
Analysis begin when a child is 2 or 3 years old. In addition, it is recommended that a child receive this treatment 40 hours a week. Many school districts offer these services. which are carried out by an "in-home trainer" who comes to the child's home. However.
school districts in Texas usually do not offer more than 20 hours each week.
Furthermore, there are districts that do not have qualified employees to carry out this process. Many professionals do not like this method because of its aversiveness. ABA is training a child, and some believe that it is not humane, but studies have demonstrated that this therapy increases compliance. ""After a very intensive behavioral intervention. an experimental group of 19 school-age children with autism achieved less restrictive school placements and higher IQs than did a control group of 19 similar children by age
7" (McEachin, Smith, & Lovaas, 1993, p. 1). When using this method of treatment, it is very important to have qualified trainers. The treatment will be ineffective if the trainer is not formally educated about autism and Applied Behavior Analysis.
15 Medication
Some individuals with autism receive medications that help modify behaviors.
One important aspect to take into consideration is that the benefits must outweigh the risks. Damage to the nervous system or damage to internal organs is a risk not worth taking. The liver acts as a filter for the body, and a drug administered at too high a dosage may cause irreparable damage. Children have immature nervous systems. which increases the likelihood of side effects caused by drugs. For example, if a child is given
Prozac and only gains a slightly calmer demeanor, it is probably not worth the risk. On the other hand, if the child exhibits self-injury and the behaviors subside after the drug is administered, then the child should continue taking the drug. The younger the child. the greater the risk with medications such as Prozac or Zoloft. As a person becomes a teenager or adult, the risk is much less. Furthermore, evidence shows that children given drugs at an early age may become dependent or tolerant to them when they need them later in life. This section does not show the full range of medications, but the basic idea is that risks and benefits should be addressed. The drugs being used should increase positive behavior and/or language development with little or no side effects (Gradin,
1998).
Gradin (1998) states that the best way to determine if a medication is working is to start the child on it without the teacher's knowledge. Medications will generally have a quick and obvious effect. If teachers notice an effect, positive or negative. they should alert the parents. To evaluate the positive or negative effects, the medication therapies should not be changed at the same time. If a medication shows less positive than negative results, it should be discontinued. There are several medications that are very
16 similar but have subtle differences. For instance, Prozac may \vork for one person while another person with the same characteristics will benefit more from Zoloft or Paxil. It is very important to avoid abrupt switches in medication, e\'en if it is from the brand name to the generic version. Because most autistic people have overly sensiti\'e ner\'ous systems, the correct dosage is very important. Side effects. like early morning waking, can be caused by too much of a particular medication. Lowering the dose often alle\'iates this problem, but if the excessive dosage continues other negative effects such as insomnia, irritability, agitation, and aggression may occur. Both the parents and the doctor should carefully monitor drugs and their effects. Prozac may have an overall calming effect, but when the level of the drug increases in the body. it is important to quickly lower the dose because the drug may have an opposite effect and allow negati\'e behaviors to arise (Gradin, 1998).
Vitamin 86 and Magnesium
According to Rim land ( 1997), there have been 18 studies related to autism and the effects of vitamin B6 ingestion, and all reported positive results. Rimland suggests the following:
If a drug shows positive results in about half of the evaluation studies, it is considered a success, and the drug is then advocated for use with autistic patients. However, despite the remarkably consistent findings in the research on the use of vitamin 86 in the treatment of autism and despite its being immeasurably safer than any of the drugs used for autistic children, there are at present very few practitioners who use it or advocate its use in the treatment of autism. (p. 1)
Research with vitamin 86 and autism began in the 1960s. Two British neurolo- gists, A. F. Heeley and G. E. Roberts, reported that 11 out of 19 autistic children excreted abnormal metabolites in their urine when given a tryptophan load test. To normalize the
17 urine, they gave these children a 30mg tablet of vitamin 86. At that time. no behavioral
studies were done. But later, in 1966, V. E. Bonisch reported that 1~ of 16 autistic
children had shown considerable behavioral improvement such as better eye contact. less
self-stimulation behavior, and fewer tantrums when given higher doses ( 1OOn1g to
600mg) of vitamin B6. After many doses of this vitamin were adn1inistered, three of
Bonisch' s patients spoke for the first time (Rim land, 1997).
As the evidence recorded on the children in the megavitamin study increased,
Rimland, a researcher at the Autism Research Institute, began his own investigation.
Rimland sent questionnaires to 1,000 parents of autistic children, and 57 reported they
had experimented with large doses of vitamins. Of those 57, most had seen positive
results in their children. Because of these results, Rimland decided to conduct a large
scale study with autistic children and megadoses of vitamins. He used different
quantities of vitamin B6, which is deficient in some children with autism. l'\ iacinamide.
pantothenic acid, vitamin C, and a multivitamin tablet were especially designed for this
study because of digestive problems experienced by many autistic individuals. All of the
children resided in the United States or Canada, were living with their parents at the time,
and were supervised by their own physician. Originally. there were over 600 parents who
volunteered for this experiment, but most could not overcome their physician's
skepticism and only 200 participated. At the end of the 4-month trial, it was clear that vitamin B6 was the most important vitamin investigated. There was a significant behavioral improvement in 30o/o to 40o/o of the children given vitamin B6; however. some children had n1inor side effects such as irritability. sound sensitivity, and bed-wetting.
18 Remarkably, when an additional magnesium tablet was given. the side effects subsided
(Rimland, 1997).
Two years later, Rimland. concentrating on only Yitamin B6 and magnesiun1.
created another study. This blind placebo-controlled experiment showed a definite
increase in positive behavior such as eye contact and less self-stimulatory behaviors.
Although no patients have been cured with this treatment, many have shown remarkable
improvement. The behavior of children given vitamin B6 and magnesium improved.
and behaviors such as stemming and tantrumming decreased significantly. People vary
greatly in their need for vitamin B6, but according to this study the data simply prove that
autistic children have a deficiency in this vitamin (Rimland, 1987).
Secretin
Secretin is a hormone found in the pancreas. liver, and intestinal tract. This
hormone, which is extracted from pig donors, stimulates the pancreas to release enzymes.
which aids in digestion and may help autistic children with gastrointestinal problems.
Approximately 200 autistic people in the United States have been given infusions of this
hormone. Surprisingly, the majority of these people improved within a few days of the
infusion. Parents have noticed a positive difference in the areas of speech/language, eye contact, sleep, and attentiveness. Also, the children who experienced an irritable bowel seemed to be cured of diarrhea within a day or two. The effect of secretin lasts between 4 to 6 weeks and appears to be relatively safe. but no clinical studies have been conducted in a controlled environment. There is some concern regarding this treatntent. The body may build antibodies against the secretin since the hormone is not extracted front huntan
19 hosts. A person may build up antibodies from the impurities within the infusion.
Because of the lack of long-term studies, no one knows \vhat the long-term side etTects
may be (Edelson, 2001).
Ferring Pharmaceuticals is the only company producing secretin. and because of
the lack of demand they have cut back on their production. Other companies are
planning to start, or increase, the production of this hormone through modernized
extraction processes. Additional research with secretin will provide a better under
standing of the benefits and consequences of its use in autism (Edelson. 200 I).
Melatonin
Approximately half of all autistic children have trouble sleeping. This awkward
disturbance in their sleeping pattern may also render the child's parents unable to sleep.
Melatonin, a hormone produced by our bodies, is thought to produce normal sleep
patterns and daily bodily rhythms. Presently, the natural hormone is available over-the
counter. Although this substance is thought to be safe and effective, the FDA has not
approved it. In fact, certain special-interest groups are currently lobbying for its removal
from the market. According to Panksepp (1990), the human brain has a clock-like
mechanism that keeps time in a 24-hour period. The brain is controlled by many factors,
one of which is light. Melatonin is another mechanism that helps our body differentiate
day and night. Melatonin secretions occur during our deepest sleep. People who cannot control their body clocks due to, for example, loss of sight, may have destabilized day and night cycles. When used correctly, Melatonin has been found to produce normal
sleeping patterns for autistic people, which allows their bodies to employ natural
20 restorative processes that cannot occur during waking activities. Sin1ilar to blind pt!opk. the brains of some autistic children are deficient in this particular brain chen1istry.
Researchers believe that some children with autism. for reasons unknown thus far. do not secrete enough of the hormone. Panksepp states that melatonin should be gi\·en only once a day, in the correct dosage and on a specific schedule. Melatonin comes in 2.5mg or 3mg tablets, and a young child should take only 1/3 of this amount 30 minutes before bedtime. If tolerance seems to be occurring and the melatonin is losing its effectiveness. it is recommended that the child stop using the supplement for a week or month
(Panksepp, 1990). Increasing the dosage may have short-term benefits but may intensify the tolerance problem in the future.
21 CHAPTER III
SENSORY INTEGRA TIO~ DYSFL'\:CTIO::\
Children with autism are usually found to have a dvsfunctional. senson'. svstem..
Along with many children with other disorders. autistic children have problen1s processing sensory input. The three senses that are disordered when referring to sensory integration dysfunction are the tactile, vestibular. and proprioceptive systems. The parts of the brain responsible for these senses are interconnected and begin to form before birth. If there is a dysfunction in these systems, development may be delayed or permanently hindered. These three senses allow us to experience, interpret and respond to certain stimuli in our environment. Hatch-Rasmussen (1995) states that .. sensory integration dysfunction is a disorder in which sensory input is not integrated or organized appropriately in the brain and may produce varying degrees of problems in development information processing, and behavior'' (p. 1). Sensory integration plays a major role in the lives of many autistic children, so it should be addressed as a crucial treatment component.
The Tactile System
The tactile system consists of nerves under the skin that send certain information to the brain (e.g., light touch, pain, temperature, and pressure). These responses help us perceive different environments and, in turn, contribute to our sun·ival. A person with a dysfunctional tactile system may withdra\\' when being touched, complain about clothes being too itchy or tight, refuse to eat certain textured foods. avoid getting hands dirty. and not like their face washed. These indications may lead to confusion between touch and
22 pain and may cause irritability or hyperactivity. In many cases a person will even isolate themselves to reduce the risks of feeling pain caused by tactile defensiveness (Provident.
2000).
Abnormalities in the cerebellum and corpus collosum have been linked to those with autism and sensory integration dysfunction. Although the cause of sensory integration dysfunction is not known, it is thought to be caused by an immaturity in the cortex of the brain. Abnormal neural signals in these areas may interfere with other brain processes. This excessive brain activity may cause intense over-stimulation. called
~~hypersensitivity." A child with autism may be hypersensitive and not feel pain. Some will even display self-mutilating behaviors or be very rough with themselves and others in attempts to gather more information by the sense of touch (Hatch-Rasussen, 1995).
The Vestibular System
The vestibular system also plays a major role in the sensory system. This refers to the structures within the inner ear termed the semi-circular canals. These mechanisms detect movement and changes in the position of the head. For example, when one· s eyes are closed, the vestibular system signals whether the head is tilted or upright. A person with a vestibular dysfunction may be hyperactive or hyposensitive. Therefore. persons who are hypersensitive may appear to be fearful when confronted with stairs or uneven ground. Their balance may be out of sync, causing them to be delayed in crawling and/or walking. In generaL these children appear to be clumsy. The other extreme of vestibular dysfunction is hyposensitivity. Children with this dysfunction may present behaviors
23 such as body whirling, jumping, and/or spinning. They actively seek intense sensory experiences in attempts to stimulate their vestibular svstems. "'
The Proprioceptive Svstem
The last of the three main causes of sensory integration dysfunction is an abnormal proprioceptive system. This system refers to the components that provide a person with subconscious awareness of body position. The muscles, joints, and tendons of one's body usually tell the body where it is in relation to things such as the ground or a chair.
For example, the proprioceptive system is responsible for telling our bodies how to sit properly in a chair and how to step off a curb smoothly.
Some common signs of proprioceptive dysfunction are clumsiness. a tendency to fall, a lack of awareness of body position in space, odd body posturing. minimal crawling when young, difficulty manipulating small objects (buttons. snaps), eating in a sloppy manner, and resistance to new movement activities. (Hatch Rasussen, 1995, p. 2)
In the case of sensory integration dysfunction, a child may be over- or under- responsive to sensory input. In addition, the child's activity level may be abnormally high or unusually low, appearing to be either in constant motion or severely fatigued.
When these systems are dysfunctional, gross and fine-motor coordination are also affected. Another result of sensory integration dysfunction is a delay in speech and/or language, which have been linked to academic underachievement. Behavior problems may arise due to impassivity, distractibility. and lack of planning. A child may become irritable or anxious when confronted with new situations because of the uncertainty that may be experienced. "These children often have a 'fight-or-flight' reaction to sensation:
24 they become aggressive or withdraw when they are touched or hear loud sounds .. (Hatch-
Rasmussen, 1995, p. 1). According to Hatch-Rasmussen ( 1995 ):
Evaluation and treatment of basic sensory integrative processes is perfonned by occupational therapists and/or physical therapists. The therapist· s general goals are ( 1) to provide the child with sensory information that helps organize the central nervous system, (2) to assist the child in inhibiting and or modulating sensory information, and (3) to assist the child in processing more organized responses to sensory stimuli. (p. 2)
Sensory Adventure Camp
Newly created programs, which are available to families who have children with
sensory integration dysfunction, have proven to be beneficial for both the parents and
children affected. One example is a Sensory Adventure Camp. This camp is an
opportunity for parents and children to experience play geared toward sensory
stimulation. This particular program holds 6-week sessions, meeting one day a week for
3 hours. Each session has a theme with corresponding activities. Sensory Adn:nture
Camp allows children to select the activities in which they want to participate. At the
same time, participants are encouraged to challenge eight stations based on different
sensory activities. An activity in a session with a circus theme utilizes a ball pit, and the
children are encouraged to get into the middle of the pit and find different objects such as
circus people and animals buried within the balls. This activity stimulates the tactile
system. Since the activity is fun, children may forget their fears or experience less fear related to that type of touch-pressure. This program helps parents because available professionals can answer their questions and because they get to meet other parents who are dealing with the same or similar problems (Provident, 2000).
25 Sensory Integration Training
Many school districts offer sensory integration training. After the child is evaluated, a professional suggests an individualized sensory integration program that is incorporated into the child's educational curriculum. Many autistic children are offered at least one session a week in a sensory integration laboratory or gym. A facility like this may include a padded room with different slides and swings. There are activities that stimulate fine- and gross-motor functioning. Sensory stimulation programs and play-like therapy are designed to calm nerves and help children coordinate appropriate responses to a noisy and chaotic world. There are other techniques used in sensory integration. such as Compression Therapy and Brushing Therapy.
Compression Therapy stimulates nerve fibers that release soothing neurochemicals that lessen the adverse reaction to normal touch. With Compression Therapy. a trained person applies and releases pressure to the wrist, elbow, head/neck, knee, and ankle joints. Another type of treatment is a weighted vest. This may be beneficial for children who are hyperactive. The purpose of the vest is to help keep the child "'grounded"" because some children with sensory integration dysfunction do not know where they are in relation to the world around them. It is believed that a dysfunctional sensory system causes other problems such as behavior, memory. motor, and cognitive functioning. This therapy calms the nerves of some autistic children. An occupational therapist may also prescribe that brushing be added into an autistic child's sensory integration program.
Brushing consists of applying pressure with a brush on a child's legs and arms. Parents can learn to participate in the various activities, but involvement in their child's therapy should be done only with professional advisement and guidance.
26 Auditory Integration Training
Although hearing is a part of sensory integration, a child will usually receive
treatment for hypersensitive hearing elsewhere. Auditory Integration Training (AIT). or
music therapy, created by Guy Bernard of France. may be beneficial to children who
cover their ears or scream in certain situations. Since autism is a social communication
problem, auditory information processing plays a role in those affected by the disorder.
Auditory processing problems may occur if one hears some sound frequencies better than
others. Edelson ( 1995d) states that "a person may be hypersensitive to the frequencies
2000 and 8000 hertz, but hear all the other frequencies in the spectrum at a normal level.
The frequencies to which a person is hypersensitive are referred to as ·auditory peaks.· and these peaks take on the appearance of a mountain range in one ·s audiogram" (p. 2 ).
Music therapy is accomplished with a device that selects high and low frequencies from music that is transmitted to the listener or trainee through headphones. At the very beginning of the sessions, an audiogram records auditory peaks that the child is sensitiYe to. Those frequencies are then filtered or blocked out of the music so the trainee can listen without any problems. The second audiogram is then conducted after the first listening session to see if the auditory peaks are still present or if any new peaks have developed. "According to Dr. Bernard. after completion of the program. all frequencies should be perceived equally welL and the person should no longer have peaks'· (Edelson.
1995a, p. 2). The program consists of two 30-minute AIT sessions for 10 days. One explanation for the success of AIT with autistic individuals is that AIT conditions the person to shift attention more easily. Since high- and low-frequency sounds are sent randomly, the trainee is unable to predict the sound he will hear and, as a result, may be
27 better able to attend to and understand the options related to sounds and mo\·emcnt.
Another possible explanation is that autistic people are sometimes described as ··tuning out" others around them. With AIT, the person cannot tune out the frequencies because he cannot anticipate a high or low frequency. As a result, he is being trained to "tune in."
From this, it is possible that the person starts to perceiYe sounds, especially speech. more clearly. Hopefully, from this new perception. he will be able to learn the relationships between a sound and a behavior, object, action, and event (Edelson. 1995a).
28 CHAPTER IV
CONCLCSIOi\
Early Intervention
Early intervention is the key to successful treatment of children with autism. The earlier a parent or teacher can identify a problem, the easier it is for a child with a pervasive developmental disorder, such as autism. to adjust and adapt to daily liYing.
Assessment of children with autism is best conducted by a multidisciplinary team consisting of a speech-language pathologist, psychologist, special educator. occupational therapist, and a developmental pediatrician. Depending on the child's need. a physical therapist, psychiatrist, and audiologist may also be needed. These professionals will collaborate to complete a diagnosis and develop an appropriate treatment plan. Most professionals agree that optimal learning will be acquired by stntcture and routine because most autistic children have difficulty organizing and interpreting what is going on around them.
A program should provide structure that contains clear rules and routines that include both positive and negative reinforcement. Parents should be informed about rewards for good behavior. which include favorite games and pastimes. A child's self stimulatory behaviors should be allowed only during specified times. For instance. a child can make loud noises only when he is alone and for 2 minutes per time period.
Some autistic children will see this as a reward. Another reward system for a child with autism is various types of sensory stimulation. A child's occupational therapist may request jumping on a trampoline or swinging for an allotted time period. According to
29 Volkmar ( 1995), "play on gross motor equipment also provides great opportunities for building the child's tolerance for, and use of. social eye contact and facial expression" (p.
177).
One goal of intervention for children with autism is teaching them how to allow small changes in routine. Small changes should be placed into an autistic child· s schedule so the child can adjust to unpredicted changes in schedule. Another goal for intervention is to help the child appropriately socialize with others. Significant others should be taught how to provide autistic children with positive social interactions so that they learn how rewarding social interactions can be and seek them out. Social and appropriate touch should be taught to autistic children. For example, an autistic child may pull or stroke a classmate's hair because he likes how it feels. This type of behaYior should be discouraged and appropriate touch should be taught, such as a .. high fin~.- lntervention with children with autism includes representational play because one of the defining characteristics of autism is inappropriate play. Children with autism do Ycry little pretending on their own, so by developing a play scheme with activities that they are familiar with and interested in they will be more likely to engage in that scheme. An example of such a scheme is a child who likes the movie Beauty and the Beast. A parent or teacher may suggest a pretend tea party with that child by sitting down at a table and acting like they are preparing and drinking the tea. Some children with autism do not develop verbal language. An intervention for these children is to teach the child sign language. This way. the child will still be able to communicate through expressive language and may even develop verbal language through this skill. Some autistic children may even learn to read on their own but not actually comprehend what they are
30 reading. At this time, an aid in comprehension may be established through association with actions and objects (Volkmar. 1995).
Treatments
With no cure and no prenatal test for autism. there is no prospect of eliminating this condition in the near future. However, continued educational research concerning the best way to teach autistic children and continued scientific research concerning possible treatments for autism provide the greatest hope for dealing with the effects of this profound disorder. There are defining characteristics of autism. but very few autistic children share the same qualities. In other words, there are no two autistic people that are exactly the same. In general, autism's central characteristics are social impairment. verbal and communication impairment, and a repertoire of abnormal beha\'iors. There is no known cause for autism, but many theorists believe that there are abnormalities in the motor areas of the brain, such as the cerebellum. Since there is little infom1ation concerning the causes of autism, there is a spectrum of therapies available. Possibly the best treatment for autism is a combination of several different approaches, both medical and non-medical.
An important dysfunction experienced by many children suffering from autism is a failed sensory system. Behavioral problems arise when a child's bodily rhythms are
"out of sync.'' The three impaired senses that may be improved by sensory integration are the tactile, vestibular, and proprioceptive systems. Certain autistic children may benefit from sensory integration techniques such as brushing, swinging, and compression therapy. Auditory processing may be disordered with autistic children because they
31 usually have problems in social communication situations. This may be because children hear speech sounds but do not understand the meaning of that sound. These problems can be eliminated by auditory integration training. By taking out the frequencies that the child is sensitive to and slowly adding them back into the music. the child will percei,·e the frequencies equally well; thus, the child can attend to sounds, especially speech, more clearly.
The planning of an early intervention strategy must be carefully related to the assessment of a child's current level of functioning. There are many professionals aYail able through school districts and the state who are qualified to complete an indi,·idual assessment of each child. Treatment of autistic children should include a reward system with special activities and sensory stimulation. The goal of early interYention is to teach the child to accept small changes, learn appropriate touch, learn expressive language. and learn representational play. Behavioral difficulties that arise from inappropriate obses sions and rituals are lessened by many of the therapies discussed. Early diagnosis and intervention improve the child's chances of being mainstreamed into school and society.
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