Autism Spectrum Disorders
Traverse Bay Area Intermediate School District
ASD A Parent’s Guide
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Table of Contents
Autism Spectrum Disorders Introduction.................................................................................. 1 What are Autism Spectrum Disorders (ASD).................................. 1 Social Issues.................................................................................. 3 Communication Issues.................................................................. 4 Behavioral Issues........................................................................... 5 Cognitive Issues............................................................................ 6 Sensory Issues............................................................................... 7 What are the Causes of Autism Spectrum Disorders (ASD)............ 8 Related Disorders.......................................................................... 9 Summary..................................................................................... 10 References....................................................................................11
“Autism is not a puzzle, nor a disease. Autism is a challange, but certainly not a devastating one. ~ Trisha Van Berkel
Introduction This booklet was developed as a resource for parents and caregivers to help them better understand Autism Spectrum Disorders (ASD). The intention is to provide parent(s) and/or caregiver(s) with a general overview. The booklet will also provide information regarding the developmental sequence associated with Autism Spectrum Disorders, associated characteristics and issues, as well as descriptions of other disorders that have similar presentations. It is our hope that this information will answer many of the questions that parents or caregivers might have regarding their child, and act as a springboard for further guidance.
Autism Spectrum Disorders What are Autism Spectrum Disorders (ASD)?
Autism Spectrum Disorders (ASD) refer to several disorders that fall under one umbrella. They include: •Autism •Asperger’s Syndrome •Pervasive Developmental Disorder Not Otherwise Specified •Childhood Disintegrative Disorder Generally speaking these disorders are marked by impairments in the areas of communication, socialization and restricted patterns of interest. However, there are unique characteristics associated with each disorder that allow professionals to differentiate one disorder from another. Within each disorder the presence, severity and manifestation of characteristics varies for every child. The symptomatology ranges widely. For instance, one child with autism may be non-verbal while another child with autism may have a large vocabulary but does not use it appropriately or effectively.
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How do the disorders differ? Autism
– The child manifests concerns in all of the following areas: •Communication •Socialization •Restricted, repetitive or stereotyped patterns of behavior
Asperger’s Syndrome
– The child manifests concerns in the following areas: •Socialization •Restricted, repetitive or stereotyped patterns of behavior
Pervasive Developmental Disorder Not Otherwise Specified – The child manifests concerns in the following areas: •Socialization •Communication or restricted, repetitive or stereotyped patterns of interest
Childhood Disintegrative Disorder
– The child experiences normal development until the ages of 2 to 4 years, followed by a dramatic loss of previously developed intellectual, social and communication skills.
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Characteristics of ASD Social
Dysfunction in social behavior is perhaps the most poignant symptom of individuals with ASD. This dysfunction may present itself in many ways and varies greatly among individuals, reflecting the nature of this “spectrum” disorder. At a core level, individuals with ASD share at least one common characteristic: they have difficulty understanding and navigating the day-to-day interactions with other human beings. Although variance in performance exists, children with ASD may misinterpret social cues, fail to develop “typical” patterns of attachment and may seek or accept affection from parents and others less frequently or only on their own terms. They may perfer to play alone. Some individuals may appear to be indifferent emotionally about family members and may lack the understanding needed to accurately interpret the social meaning of many of their parents’ or others’ behaviors (i.e., emotional reciprocity). Other children with ASD may desire much more physical contact and may appear very interested in social interaction with others. Many times, however, this social interaction is to serve the purpose and need only of the child with ASD. These interactions are characterized by an overwhelming lack of social reciprocity and children engaging in these types of behaviors are often thought of as “talking at” others, as opposed to talking with them. “Meltdowns”, verbal and physical aggression, and other emotional outbursts are common for children with ASD. The outbursts sometimes involve aggression toward others, property, animals, or themselves (banging head, biting self, hair pulling). These difficulties in emotional regulation are common to varying degrees across the spectrum and can significantly interfere with daily living, including attempts to develop and/or maintain social relationships. For the child with ASD, social interactions may be unwanted, misunderstood, or sought after, but the overriding factor is that these social interactions and relationships most typically result in the child with ASD feeling significantly frustrated.
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Communication The quality of speech and language development is an important aspect when identifying individuals with Autism Spectrum Disorder (ASD). The communication abilities of an individual with suspected ASD can differ from person to person. Some children with ASD can have little to no speech or language skills and be severely limited in both verbal and non-verbal communication skills. Individuals on the other end of the spectrum may have age-appropriate speech and expressive language skills but struggle in the area of the use of language for social purposes. Individuals may demonstrate difficulties in some or all of the areas of communication, including: • receptive language (understanding words, word meanings and combinations of words), • articulation (pronunciation of sounds and words), • expressive language (using words, forming sentences, expressing ideas), • non-verbal communication skills (gestures, facial expression, tone of voice, body language), • pragmatics (using language to make needs known, share ideas and engage in activities with others). When evaluating communication skills it is important to know if an individual can talk and combine words appropriately and also to evaluate how effectively they communicate with others. Difficulties with receptive language may be indicated when children do not understand the names of objects or ideas and concepts. They may not follow directions well. Parents report that their child may understand a concrete use of a word but get confused with more abstract language, such as, when words have multiple meanings. An example of this is illustrated in the story one teacher shared about a child who was turned in his seat looking at the child seated behind him. The teacher asked the youngster to “turn around.” The child stood up, spun in a circle and sat back down, still facing the child behind him instead of the front of the room. Multiple meanings of words, similes, humor and sarcasm can be very confusing for even highly verbal students on the autism spectrum. Understanding non-verbal communication can also be delayed. They may not understand or interpret gestures, facial expression, body language, or tone of voice appropriately. Consider that there is a significant difference between when someone laughingly says, “Stop it” with a smile on their face from when they say “Stop it,” glare at you and point their finger at you. Expressive communication skills starting with the production of sounds and words can be affected as well. Children may produce a limited number of sounds. They may not have engaged in sound play as infants, babbling rarely. Some parents report that their child may have said words on occasion but then not say them again for months. Echolalia, the repetition of words or phrases, is frequently associated with Autism Spectrum Disorder. Individuals may immediately repeat what was just said to them (immediate echolalia) or repeat phrases they heard at another time, out of context (delayed echolalia), such as lines from movies or television shows. One child after falling down and skinning his knee cried and said, “Are you okay, baby? Are you okay?” He meant that he was not okay and was hurt but echoed what had been said to him in the past. Some individual’s expressive speech and language has been described as “robotic,” often sounding like a “little professor” because of the formal but stilted quality of their communication. They may use long sentences and sophisticated words in an adult-like manner while other children speak in single words. As described earlier, non-verbal communication is frequently delayed and not used to enhance communication. Children with Autism Spectrum Disorder demonstrate different degrees of difficulty with the social or pragmatic aspects of language. Engagement with other people is often limited or awkward as they struggle with reciprocity, meaning the back and forth exchanges that naturally occur when two people communicate with one another. They may not know how to initiate communication with another person. A child with limited speech and language may say the word “juice” when he wants a drink, but does not go to another person, get their attention and say the
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Characteristics of ASD Continued Communication continued word directly to them to make their request. Others may have learned to make a direct request from another person, but when the listener makes a comment or asks a question for clarification, the child may walk away as he does not understand that the listener’s comment is related to him. Even highly verbal people with Autism Spectrum Disorder demonstrate difficulties with pragmatic language skills as can be observed when they have difficulty participating in a brief conversation for more than a few turns. Staying on topic and responding to another’s interesting topic can be difficult. It is important to keep in mind that ASD is a spectrum disorder, meaning that the degree of impairment varies greatly. Delays or disorder in the quality of communication and social skill development are intertwined and must be looked at carefully when considering the presence of Autism Spectrum Disorder.
Behavior
One of the core tenets of Autism is the need for things to be routine or predictable. When predictability is lost or diminished, a child’s anxiety increases and behavioral issues may arise. As an example, because of road construction a parent has to drive down a different road to go to the grocery store and this increases a child’s anxiety because the predictability of the normal routine is lost. As with the other characteristics associated with Autism Spectrum Disorders, manifestations of behavioral issues vary greatly among individuals. Behavioral issues may include difficulty transitioning from one activity to another, one setting to another or even one person to another. This is often observed when a child with Autism is asked to go from an activity of high interest to an activity of low interest (e.g., when asked to stop playing with his Thomas the tank engine “train” and come to the table to eat dinner). Other behaviors used to reduce anxiety or withdrawal from the anxiety producing environment may include: engaging in stereotypic or self-stimulatory behaviors (e.g., spinning objects, rocking, hand or finger flapping, darting from place to place in a room rather than walking, having to walk around with objects in their hands at almost all times, looking at objects in an unusual manner or from unusual angles). Restricted patterns of interest or unusual attachment to objects are observed. Some examples have included a preoccupation with forms of transportation (i.e., trains, Thomas the Tank Engine, cars) or roads, learning the types of vacuums that have been produced, playing almost exclusively with Legos, watching the same scene in a video over and over. A child’s restricted pattern of interest may change over time, but the critical element is the degree to which the child is attached to the object or activity. Self-injurious behaviors may also arise and are heartwrenching to observe. A child’s verbal skills often influence the presence of self-injurious behaviors because it has become a means of communicating or coping with anxiety. The goals of those working with a student that engages in self-injurious behaviors are to replace it with more appropriate coping strategies or means of communicating their needs.
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Cognitive
Like the disorder itself, there is no hard and fast rule regarding the cognitive skills among children that fall under the umbrella of Autism Spectrum Disorders. However, some general patterns exist. Children manifesting more severe types of Autism often have IQ scores in the developmentally delayed range. In contrast, children with Asperger’s Syndrome frequently have average to above average cognitive functioning skills (Autism Society of America: Pervasive Development Disorder). Children identified with Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified usually fair better on standardized IQ tests because they have greater language development, are visual problem-solvers and often have memorized “a lot of information.” Research indicates that the percentage of children diagnosed with autism that have IQ scores in the developmentally delayed range is between 70-80% (Lord, Educating Children with Autism) . This should not be surprising when you take into consideration one of the central tenets of Autism is difficulty with language and most norm-referenced measures of cognitive functioning are heavily language-laden. Even tasks that are non-verbal can be overwhelming for children with Autism because the directions are still presented orally and poor auditory processing skills impact the child’s ability to understand what is being asked. Many children with Autism have an “uneven development of cognitive skills” (National Association of School Psychologists, Autism Spectrum Disorder: Primer of Parents and Educators, 2004), which can be described as “splinter” skills (VanHevel, 2000). A “splinter” skill is an area in which a child may have developed special abilities (e.g., sounding out words, memorizing movie dialogue or the Presidents of the United States). A testing characteristic that often arises can be described as a disordered scoring profile. The child’s performance does not follow the typical developmental sequence of the testing instrument. This may occur in the following ways: 1) The child may miss easy items, but later successfully respond to ones that are more difficult. 2) The child does exceptionally well on verbal exercises, but marginally on visual/hands-on tasks, but still resulting in an average to above average IQ score. For example, a child receives a verbal IQ of 128, but a performance IQ of 78, which results in a full scale IQ in the average range (average scores fall between 85 and 115) on the WPPSI – III. People that administer and interpret assessment instruments have to be keenly aware of the pitfalls and look beyond the testing numbers obtained. It is their “responsibility” to use the cognitive measure as a diagnostic tool of the child’s strengths and weaknesses and to look at how it relates to eligibility under the category of Autism Spectrum Disorder.
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Characteristics of ASD Continued Sensory
Sensory processing involves the ability to sort, organize and give meaning to the various types of sensations (vision, hearing, touch, taste, smell, pain, etc.) that are constantly being received by the brain. The brain’s ability to take in, organize, prioritize and filter sensory information is the beginning of a child’s overall development and learning. Many children with Autism have problems associated with processing sensory information. When children have sensory deficits or excesses, they may over or under-react to situations that others can tune out or ignore. A child with Autism Spectrum Disorder may be more sensitive to sounds or to lights. As a result of this over-sensitivity, the child may be fascinated with Christmas tree lights or cry inconsolably at the sound of a vacuum. Other children may be under-sensitive to sensations. These children may fall down and hit their heads without crying, or fail to respond when their name is called repeatedly by their parents. The following is a list of behaviors associated with sensory difficulties that are often seen in children under the umbrella of Autism Spectrum Disorder: •Will only eat a highly selective group of foods; i.e. salty, soft, crunchy, meat, etc. •Flaps hands at the side of their face. •Likes to watch things that spin and sparkle. •Likes to spin, jump or run without apparent reason. •Shows fascinations with certain activities or sensations. •Is under-sensitive to pain. •Likes to stare into space (not due to a seizure disorder). •Closely examines objects by holding them near their face. •Avoids being touched or likes to be touched only in heavy play.
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Causes of ASD The causes of Autism Spectrum Disorders (ASD) are still being investigated by researchers. Although no one knows exactly what causes ASD, many scientists hypothesize that genetic and/or environmental factors may play a role (Centers for Disease Control and Prevention & The National Autistic Society websites, 2010) . Primary areas currently being explored as causes of ASD are: •genetics/heredity •brain-based differences •pre-natal factors •exposure to environmental toxins •viral infections and/or immune system deficiencies (Autism Society of Canada website, 2006)
Brain-based Research
Generally speaking, structural and chemical differences have been identified in people diagnosed with ASD. The abnormalities occur in various areas of the brain such as the cerebellum, the hippocampus, the amygdala, and the frontal cortex. This is important because these structures are involved in controlling and coordinating social interaction, sense perception, communication, memory, emotional functioning and other processes. Researchers are utilizing brain imagery methods, such as, CT and MRI to investigate brain differences in ASD.
Genetics Research
Current research is showing a pattern of ASD or related disabilities in some families. Twin studies conducted by Bailey et. al. and others, indicate that ASD can be inherited (identical twins had an 81% occurrence of ASD while fraternal twins had only a 3% occurrence). Furthermore, 5% of families have more than 1 family member with ASD. The indication is that a genetic component does exist. To date, no specific gene has been directly linked to ASD.
Environmental Toxin Research
With regard to environmental toxins, vaccinations may be the most controversial causal theory about ASD. Many vaccines contained thimerosal, a vaccine preservative containing mercury. The symptoms of mercury poisoning in children are very similar to the symptoms of Autism and vaccines and mercury poisoning have been the subjects of numerous studies, however, according to the Center for Disease Control (May, 2010) “studies continue to show that vaccines are not associated with ASDs.” Readers are referred to the Center for Disease Control and Prevention and the Association for Science in Autism Treatment for additional information. While it is yet unclear as to the underlying causes of autism spectrum disorder many scientists agree that there is likely more than one underlying cause and that further research is needed in order to identify those causes.
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Related Disorders Rett Syndrome
Rett syndrome is a neurological disorder that is characterized by normal early development, followed by loss of purposeful hand movement, slowed head and brain development, abnormal gait, seizures and mental retardation. Autistic-like characteristics include; non-purposeful hand movements such as hand-wringing or hand-washing, poor eye-gaze and toe-walking among others. Originally, it was thought to only affect females, but research indicates that it does impact males but the characteristics differ.
Fragile X Syndrome
Fragile X is an inherited condition that results in cognitive delays and produces many autistic-like behaviors including poor eye contact, language delays, self-stimulatory behaviors, hand flapping, tactile defensiveness and echolalia. Physical characteristics exist including a long face, high arched palate and large ears. Approximately 1 in 3 children with Fragile X also have Autism (The National Fragile X Foundation). The ratio of males that inherit the syndrome is higher than females. As noted, this condition is inherited and there is a DNA test to help with the diagnosis of Fragile X.
Landau-Kleffner Syndrome
According to the National Institute of Neurological Disorders and Stroke, Landau-Kleffner is a rare disorder characterized by “the sudden or gradual development of aphasia (inability to speak or understand language) and seizures.” Although many children with LKS have seizures, not all do. The onset usually occurs between the age of 5 and 7 following previous normal language development.
Tuberous Sclerosis
Tuberous Sclerosis is a disease that causes benign tumors to grow in the brain and on other organs that affects the central nervous system. Its presentation can range from mild (unknown) to severe. It can result in seizures, cognitive delays and autistic-like behaviors including stereotyped behaviors, abnormal speech, withdrawal and impaired social interactions.
Cornelia DeLange Syndrome
Cornelia DeLange is a rare syndrome associated with Autism. These children are often born with low birth weight, experience delayed growth, have small stature and head size. Facial features include eyebrows that meet at the midline, long eye lashes, short up-turned nose and thin downturned lips. They have expressive and receptive language delays, demonstrate hyperactivity, short attention span, oppositional and repetitive behaviors and can be self-injurious.
Other Disorders that may manifest characteristics of Autism
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•Tourette Syndrome •Williams Syndrome •Visual impairments •Hearing impaired or deaf individuals •Sensory Integration Disorder
Summary Autism Spectrum Disorders (ASD) refer to several disorders that fall under one umbrella. Generally speaking these disorders are marked by impairments in the areas of communication, socialization and restricted patterns of interest. The degree of impairment varies greatly, which impacts identification. The age of identification is often based on the severity of the presenting symptoms. Children with more severe symptoms are likely to be identified earlier than children with more subtle manifestations. In the educational setting it is the responsibility of the multi-disciplinary team to determine if the child meets the educational criteria to be eligible for special education support and help establish an educational plan (i.e., Individual Educational Plan – IEP) to meet that child’s unique learning needs. This plan will be created in conjunction with the caregiver. For additional information the reader could review the attached list of reputable websites and/or contact a representative from the Traverse Bay Area Intermediate School District.
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Autism (with a capital “A”) to me, says that I accept my child wholly. I celebrate his differences and his quirky-ness. I advocate diversity. I try to empower him. I am proud of his successes, no matter how small they seem. I hope he holds onto the compassion he has in his heart into adulthood. I do not think he needs “fixing.” I am proud that he is my son, and sometimes I am humbled by that very same thought. ~unknown
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References Edelson, S.M. Social Behavior in Autism. Center for the Study of Autism (1997). Available from: http:www.autism.org/social.html National Institute of Mental Health. Autism Spectrum Disorders: Pervasive Developmental Disorders (2004). Available from: http://www.nimh.gov/publicat/autism.cfm VanHevel, J., Does your child have Autism (2000), Diagnostic and Statistical Manual IV http://info.med.edu/chldstdy/autism/pddinfo.html Lord, C., Educating Children with Autism (2001) Centers for Disease Control Autism Society of Canada website (2006) Bailey et al (genetic research on cause of ASD) The National Fragile X Foundation
Useful Websites: The following are web sites that you may find informative. This is by no means an exhaustive list, rather a place to start. http://www.schoolpsychology.net/ Sandra Steingart’s School Psychology Resources Online - provides information/links regarding ASD and more. http://isnt.autistics.org/index.html Semi-humorous dissent, an autistic looks at Neurotypical Syndrome. http://www.specialabilities.org/ Home page for Special Abilities, Inc. - a nonprofit organization that focuses its efforts on ASD. http://www.nichd.nih.gov/autism/ Research information specific to Autism from the National Institute of Child Health and Human Development. http://www.nimh.nih.gov/publicat/autism.cfm National Institute of Mental Health provides information about Autism. http://info.med.yale.edu/chldstdy/autism/index.html Yale Child Study Center Developmental Disabilities Clinic, headed by Fred Volkmar, M.D., & Ami Klin, Ph.D., provides multidisciplinary evaluations and promotes life-long access and opportunities for persons with Autism. http://www.autcom.org/ Autism National Committee - an Autism advocacy organization dedicated to “social justice for all citizens with Autism.” http://www.tonyattwood.com.au/ Home page for Tony Attwood - specialist in Asperger’s Syndrome. http://www.udel.edu/bkirby/asperger/ Online Asperger Syndrome Information and Support (OASIS) - a site maintained by parents of children with ASD http://www.gvsu.edu/autismcenter http://www.ocali.org http://www.autisminternetmodules.org http://www.asatonline.org Scientifically sound information about ASD and treatment. Association for Science in Autism Treatment http://autismpdc.fpg.unc.edu/ Multi-university promoting evidence-based practices for children and adolescents with ASD. National Professional Development Center on Autism Spectrum Disorder
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The Traverse Bay Area Intermediate School District (TBAISD) Board of Education declares it to be the policy of this district to provide an equal opportunity for all students, regardless of gender, religion, race, color, national origin or ancestry, age, disability, marital status, place of residence within the boundaries of the District, or social or economic status, and/or any other legally protected characteristic, to learn through the curriculum provided by the District.