Autism Spectrum Disorder A Parent and Teacher Guide
Boone‐Clinton‐NW Hendricks Joint Services 1005 S Meridian St., Ste. 150, Lebanon, IN 46052 765‐483‐3090 *** 800‐423‐5107
2
Table of Contents
Page 3 4 7 8 15 16 19 21 23 30 31
34 37
44
46
Topic Disclaimer Autism Spectrum Disorder Frequently Asked Questions Autism Spectrum Disorder Quick Facts ASD: History and Detailed Description Visual Description of Autism The Diagnosis of Autism Spectrum Disorder When Your Child is Diagnosed with Autism Spectrum Disorder What Educational Services are Children with Autism Spectrum Disorder Entitled To? Treatment of Autism Spectrum Disorder Interventions for Autism Spectrum Disorder Understanding and Supporting Children with Autism Spectrum Disorder Who Are Able to Interact Verbally: More Interventions Research into the Cause and Treatment of Autism Spectrum Disorders Selected State Resources for Information, Training, Advocacy, and Empowerment for Persons with Disabilities and Their Families Autism Society of American Chapters and Parent Support Groups in and Around Boone, Clinton, and Hendricks Counties in Indiana Selected National Resources for Information on Autism Spectrum Disorder Selected Resources by and for Siblings and Peers
3
Disclaimer
The information contained in this packet does not imply an endorsement by Boone-Clinton-NW Hendricks Joint Services of any particular treatment, intervention, service or theory.
4
Autism Spectrum Disorders Frequently Asked Questions What is Autism Spectrum Disorder? Autism Spectrum Disorder (ASD) is a life‐long developmental disability. It is a disorder of the brain that typically affects a person’s ability to communicate, form relationships with others, and respond appropriately to the environment. Some people with ASD are relatively high‐functioning, with speech and intelligence intact. Others are mentally retarded, mute, or have serious language delays. For some, ASD makes them seem closed off and shut down; others seem locked into repetitive behaviors and rigid patterns of thinking. Although people with ASD do not have exactly the same symptoms and deficits, they tend to share certain social, communication, motor, and sensory problems that affect their behavior in predictable ways. Whatever happened to plain old autism? What is “autism spectrum disorder?” The common thought today among autism professionals is that autism occurs along a continuum. In other words, a diagnosis of autism is not a black and white one in which a person either has autism or does not. Using the term autism spectrum disorder allows us to incorporate the continuum idea as well as to include Asperger’s Disorder and Pervasive Developmental Disorders. What is Asperger’s? Asperger’s, sometimes called high functioning autism, is a form of autism, along the autism continuum. Language and intelligence usually remains intact although a person with Asperger’s will often still have difficulties with social relationships and inappropriate interactions within their environment (e.g., obsessions, etc.). These children have issues common to those with high functioning autism. Their intelligence is usually normal or above. They sometimes have unusual strengths and weakness (“splinter skills”). These children often have a pattern of unusual development in social interaction, in skills, and in behaviors. No delay in basic language skills, but communication may be impaired. These children often appear “normal” to others.
5 What is a Pervasive Developmental Disorder? Sometimes parents may hear the term Pervasive Developmental Disorder, or, PDD. This is a term that encompasses many different disorders, including Asperger’s Disorder, ASD, Rett’s Disorder, and Childhood Disintegrative Disorder. PDD is an umbrella term used to denote a disorder in which there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, and/or when stereotyped behavior, interests, and activities are present. What causes autism? Autism is a brain disorder, present from birth. The cause of autism is still unknown. Some research suggests a physical problem affecting those parts of the brain that process language and information coming in from the senses. There may be some imbalance of certain chemicals in the brain. Genetic factors may sometimes be involved. Autism may indeed result from a combination of several “causes.” What does NOT cause autism? Immunizations. Psychological factors in the environment. Parents. Food. How is autism spectrum disorder diagnosed? No medical tests like x‐rays or blood tests detect autism. Also, several conditions can cause symptoms that resemble those of autism. Therefore, there is a need to rule out other disorders, including hearing loss, speech problems, mental retardation, and neurological problems. But once these possibilities have been eliminated, a visit to a professional who specializes in autism is necessary. A variety of methods can be used to identify the disorder including standardized tests, rating scales and interviews. Diagnostic criteria are taken from the Diagnostic and Statistical Manual of Mental Disorders, IV (DSM IV) for diagnosis. The 3 primary areas that are addressed are communication, social interaction, and restricted interests. Are there accompanying disorders? Yes. Many disorders often co‐occur with autism, including mental retardation, seizures, Fragile X syndrome, and tuberous sclerosis. Can autism spectrum disorder be outgrown or cured? At present, there is no cure for ASD. Nor do children outgrow it. However, children with ASD are very capable of learning and of having happy, successful lives when provided with the appropriate assistance from those in their lives (teacher, parents).
6 What intervention is best? What works? Autism responds best to behavioral and educational treatment. A behavioral program including applied behavior analysis or behavioral modifications typically is most effective. What educational services are children with ASD entitled to? Every child with a disability under the age of 21 is entitled to a free, appropriate public education (FAPE).
7
Autism Spectrum Disorder Quick Facts*
• ASD is the fastest growing developmental disability • 10‐ 17% annual growth • Growth comparison increase during the 1990’s: US population increased by 13% Disabilities overall increased by 16% ASD increased by 172% • 2 to 5 cases per 1,000 individuals • 2 of every 10 ASD children are female • commonly occurs with mental disabilities (50%) • cognitive skills tend to be uneven (i.e., “splinter skills”) • five behaviors that suggest a further evaluation should be done:* does not babble or coo by 12 months does not gesture (point, wave, grasp) by 12 months does not say single words by 16 months does not say 2‐word phrases on his or her own by 24 months has any loss of language or social skill at any age appears “deaf” at times (when not) unusual range of interests, use of objects, or preoccupations socially: looks away, avoids others, inappropriate social response, decreased social initiations, unusual approaches, difficult peer interactions *from the National Institute of Child Health and Human Development (NICHD) and from a presentation by Dr. Cathy Rice, Centers for Disease Control, 9/10/04
8
ASD: History and Detailed Description Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated one of every five hundred children, a disorder that causes disruption in families and unfulfilled lives for many children. In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label early infantile autism into the English language. At the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger syndrome. Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders DSM‐IV‐TR (fourth edition, text revision)1 as two of the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior. The autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months. Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders. Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed ʺdifferentʺ from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in children who seem to have been developing normally. When an engaging, babbling toddler suddenly becomes silent, withdrawn, self‐abusive, or indifferent to social overtures, something is wrong. Research has shown that parents are usually correct about noticing developmental problems, although they may not realize the specific nature or degree of the problem. The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD‐NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder. This brochure will focus on classic autism, PDD‐NOS, and Asperger syndrome, with brief descriptions of Rett syndrome and childhood disintegrative disorder on the following page.
9 What Are the Autism Spectrum Disorders? The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome. Prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. Prevalence estimates range from 2 to 6 per 1,000 children. This wide range of prevalence points to a need for earlier and more accurate screening for the symptoms of ASD. The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions. Pediatricians, family physicians, daycare providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will ʺcatch up.ʺ Although early intervention has a dramatic impact on reducing symptoms and increasing a childʹs ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten. All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD. Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other children the same age. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable. ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Webcast, Autism Among Us.
10 Possible Indicators of Autism Spectrum Disorders •
Does not babble, point, or make meaningful gestures by 1 year of age
•
Does not speak one word by 16 months
•
Does not combine two words by 2 years
•
Does not respond to name
•
Loses language or social skills
•
Some Other Indicators
•
Poor eye contact
•
Doesnʹt seem to know how to play with toys
•
Excessively lines up toys or other objects
•
Is attached to one particular toy or object
•
Doesnʹt smile
•
At times seems to be hearing impaired
•
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile. In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give‐and‐take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parentsʹ displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to ʺread.ʺ To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior. Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, ʺCome hereʺ always means the same thing,
11 whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another personʹs perspective. Most 5‐year‐ olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other peopleʹs actions. Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of ʺimmatureʺ behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to ʺlose control,ʺ particularly when theyʹre in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms. Communication Difficulties By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is ʺno.ʺ Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age 5 to 9. Some children may learn to use communication systems such as pictures or sign language. Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3. Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The ʺgive and takeʺ of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand
12 body language, tone of voice, or ʺphrases of speech.ʺ They might interpret a sarcastic expression such as ʺOh, thatʹs just greatʺ as meaning it really IS great. While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high‐pitched, sing‐song, or flat, robot‐like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the ʺkid‐ speakʺ that is common in their peers. Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed. Repetitive Behaviors Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position. As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion. Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.
13 Problems That May Accompany ASD Sensory problems. When childrenʹs perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the childʹs experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream. In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm. Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests. Seizures. One in four children with ASD develops seizures, often starting either in early childhood or adolescence. Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a ʺblackoutʺ), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizureʹs presence. In most cases, seizures can be controlled by a number of medicines called ʺanticonvulsants.ʺ The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective. Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one‐in‐ two chance that boys born to the same parents will have the syndrome. Other members
14 of the family who may be contemplating having a child may also wish to be checked for the syndrome. Tuberous Sclerosis. Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis. * from: Strock, Margaret (2004). Autism Spectrum Disorders (Pervasive Developmental Disorders). NIH Publication No. NIH‐04‐ 5511, National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
15
Visual Description of Autism*
*retrieved from: www.autism-biomed.org/poster.htm
16
The Diagnosis of Autism Spectrum Disorders* Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD. In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a childʹs life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two‐stage process. The first stage involves developmental screening during ʺwell childʺ check‐ ups; the second stage entails a comprehensive evaluation by a multidisciplinary team. Screening A ʺwell childʺ check‐up should include a developmental screening test. If your childʹs pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your childʹs development will be essential in helping to screen your child. Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones. Several screening instruments have been developed to quickly gather information about a childʹs social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT), the modified Checklist for Autism in Toddlers (M‐CHAT), the Screening Tool for Autism in Two‐Year‐Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older). Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high‐functioning autism or Asperger’s Disorder.
17 During the last few years, screening instruments have been devised to screen for Asperger’s Disorder and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ), the Australian Scale for Aspergerʹs Syndrome, and the most recent, the Childhood Asperger Syndrome Test (CAST), are some of the instruments that are reliable for identification of school‐age children with Asperger’s Disorder or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay. If, following the screening process or during a routine ʺwell childʺ check‐up, your childʹs doctor sees any of the possible indicators of ASD, further evaluation is indicated. Comprehensive Diagnostic Evaluation The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD. Because ASDʹs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in‐depth cognitive and language testing. In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview‐Revised (ADI‐R) and the Autism Diagnostic Observation Schedule (ADOS‐ G). The ADI‐R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the childʹs communication, social interaction, repetitive behaviors, and age‐of‐onset symptoms. The ADOS‐G is an observational measure used to ʺpressʺ for socio‐communicative behaviors that are often delayed, abnormal, or absent in children with ASD. Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS). It aids in evaluating the childʹs body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The childʹs behavior is rated on a scale based on deviation from the typical behavior of children of the same age. Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co‐occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient
18 hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral‐motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.7 Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the childʹs unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation. Although parents may have been aware that something was not ʺquite rightʺ with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions. Are there other conditions that can mimic autism? There are several other conditions that can look similar to autism. They are: Rett’s Disoder, Child Disintigrative Disorder, children who are deaf, children with developmental language disorder, semantic‐pragmatic disorder, or acquired aphasia with epilepsy * from: Strock, Margaret (2004). Autism Spectrum Disorders (Pervasive Developmental Disorders). NIH Publication No. NIH‐04‐ 5511, National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
19
When Your Child is Diagnosed with ASD* When a child receives a diagnosis of autism, Asperger’s syndrome, or other pervasive developmental disorder parents and family members may experience a range of feelings. These feelings can include grief, denial, anger, fear, and confusion. If you are a parent, you may feel or have felt these emotions. It is important to know that you are not alone, and that many parents experience these same emotions. It is also important to recognize and work through these feelings as you begin to search for understanding, services, and support for your family and for your son or daughter with an autism spectrum disorder. One of the first steps is to learn as much as you can about the diagnosis and how it affects your son or daughter. Unfortunately, there are still no clear answers about the cause of an autism spectrum disorder. As you learn more about autism spectrum disorders, you will see that there are characteristics common across all individuals. Being aware of the characteristics that apply to your child will enable you to begin seeking supports, and appropriate programs and treatment approaches. Throughout your childʹs life, you are going to be expected to make decisions for which most of us are not immediately prepared. These decisions are further complicated when faced with laws with numbers, therapies with abbreviations, government service agencies with acronyms, medical jargon, and an array of educational approaches. Making sense of the information can be overwhelming! It is nice to know that there are others who have been down this road and who can be of assistance in helping to untangle the web of agencies, services, and resources. There are national organizations such as the Autism Society of America (ASA), that exist as support and advocacy groups for persons with autism spectrum disorders and their families. State and local ASA chapters exist in most states. The Indiana Resource Center for Autism can provide residents of Indiana with the current contact person for the state organization and the chapter closest to your area. You may also find a support group in your area for families of children with other disabilities. These can assist in identifying the availability and type of local services. Support groups can help families find comfort, acceptance, and understanding of issues as the individual with an autism spectrum disorder goes through each stage of life. Whether or not you currently feel a need to actively belong to a support group, making an initial contact can provide valuable information. Whatever the age of your child, one of the most important choices is going to be an appropriate educational placement. Children with autism can and do learn! Children are now, in some cases, being identified under the age of three. Children under age 3
20 identified and/or suspected of an autism spectrum disorder, can be served by the local First Steps program. First Steps services are free and include supports and resources according to the childʹs and families needs. Children of school age (3 to 21) identified with autism spectrum disorders are served by the local educational agency. A good transdisciplinary educational evaluation is necessary to determine the type of services your child needs. The Individuals with Disabilities Education Act (IDEA) provides for families to be actively involved in making decisions that impact their childʹs education. Learning your rights under this law will make it easier to participate in the important decisions surrounding your childʹs education. Information about accessing special education services can be obtained through your local school district. They can provide information as you begin to access your educational system. Record keeping is another strategy that can help in your efforts. As your child matures, numerous professionals will need to know specific information about your son/daughter. A developmental history provides important diagnostic, evaluation, and programming information even into adulthood. No doubt you will have volumes of information by that time. Keeping information in an organized and concise manner will not only help you remember the information, but will be easier for busy professionals to access and utilize. Identification of your childʹs and familyʹs needs is very important. Each family is different and each child with an autism spectrum disorder is different. As a result, your needs will differ and shift as your son or daughter matures. Examples of services individuals with autism spectrum disorders and their families may require include physical, occupational and speech therapy, behavior assessment and support, residential programs, medical and dental care, financial assistance programs, advocacy, legal information, respite care, intensive early intervention, sibling support and education, socialization, recreation, and vocational training. Accessing services can differ from community to community. As a parent of a child with an autism spectrum disorder there are many new things to learn. At times it will be challenging to balance routines, schedules and plans so that all family members feel accepted, supported and valued. Establish time for all family members to revitalize and gain perspective. Maintain your sense of humor. Laugh together to relieve tension. You can and will have your ups and downs. Keeping things in perspective and taking time for yourself are vital in reducing the stress that is common when parenting any child, including your child with an autism spectrum disorder. * from: The Indiana Resource Center for Autism, Indiana University, Institute for the Study of Developmental Disabilities, 2853 East Tenth Street, Bloomington, IN 47408‐2601 or call (812) 355‐6558. Web: http://www.iidc.indiana.edu/irca/.
21
What Educational Services are Children with ASD Entitled To? The Individuals with Disabilities Education Act (IDEA), reauthorized in 1997, provides that every child with a disability under the age of 21 is entitled to a free, appropriate public education (FAPE). Depending on the childʹs age, the educational program is outlined in an Individualized Family Service Plan (IFSP; for children under 3) or an Individualized Educational Program (IEP; for students 3‐21). These describe the special educational and related services specifically designed to meet the needs of the child with a disability. These programs are developed, following an assessment of the childʹs current functioning, at a series of meetings that include the childʹs family, the special education and/or medical professionals involved in the childʹs care, and the regular education teachers who may be including the child in a mainstream educational program. IDEA mandates that all children should receive their education in the least restrictive environment (LRE) that is appropriate for the child. Although the law encourages placement in neighborhood schools and interaction with typical peers, it is the childʹs needs that are the primary determiner of placement. Services for children under 3 are usually home‐based, with professionals visiting periodically to evaluate progress, provide direct teaching, and recommend activities to parents. Children from 3‐5 may be served in special programs, or in typical preschools with supportive services. School aged children are usually served within the local school district. If the team agrees that an out‐of‐district placement will best serve the childʹs needs, however, that placement will be part of the IEP, and will be financed by the local school district. Parents have a broad range of rights under IDEA. These include: • • • • •
The right to be informed about any evaluation activities that will be conducted with their child The right to attend the IEP meeting and have input into the formulation of the IEP The right to contest an IEP recommended by their local district if they do not feel it meets their childʹs needs The right to a hearing and to mediation to resolve such conflicts. As a last resort, they have the right to take the school district to court to resolve their differences
Parents should understand, though, that an appropriate educational program does not necessarily mean the most intensive or most innovative program that money can buy.
22 It is possible that a school district may refuse, for example, to pay for 40 hours/week of ABA training, even though the parents feel this is what they want for their child. If the school can, using available evidence from educational research, convince a hearing officer or a judge that a less intensive program is nonetheless an appropriate form of education, the schoolʹs view may prevail. Generally, it is advantageous to the child and the family to maintain cordial relations with their school district and to avoid antagonisms that may increase the stress in their lives. Autism will not be cured by ANY school program; but most children with autism will benefit from the mixture of highly structured and more naturalistic activities that constitute typical programs in most schools that serve these students. Most benefit from some interaction with peers, but will also need some specialized, focused intervention that addresses their individual needs. There is no magic procedure or amount of intervention that is ʺrightʺ for children with autism. And all children, even those with autism, need some ʺdown timeʺ just to do what they enjoy doing, even if it is snapping rubber bands, or lining up alphabet blocks. We encourage parents of children with autism to keep these facts in mind as they develop programs for their children with local educational agencies. To learn more about IDEA and your childʹs right to education, or to link up with other parents of children with disabilities, you may want to visit the following web sites: • • • • • • •
http://www.bbbautism.com http://www.ed.gov/offices/OSERS/OSEP http://www.education‐world.com/special_ed/iep http://www.ideallives.com http://www.ldonline.org http://www.pacer.org http://www.parentsunitedtogether.com
* from: the Yale Child Study Center. Website: http://info.med.yale.edu/chldstdy/autism/pddinfo.html
23
Treatment of ASD* When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctorsʹ reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate. For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide. By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the childʹs Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the childʹs goals. When your childʹs IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your childʹs IEP is developed, a meeting is scheduled once a year to review your childʹs progress and to make any alterations to reflect his or her changing needs. If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the childʹs home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is
24 reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD. There is a list of resources at the back of the brochure that will be helpful to you as you look for programs for your child. Treatment Options There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs. Before you make decisions on your childʹs treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your childʹs treatment based on your childʹs needs. You may want to visit public schools in your area to see the type of program they offer to special needs children. Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments: •
Will the treatment result in harm to my child?
•
How will failure of the treatment affect my child and family?
•
Has the treatment been validated scientifically?
•
Are there assessment procedures specified?
•
How will the treatment be integrated into my childʹs current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child: •
How successful has the program been for other children?
•
How many children have gone on to placement in a regular school and
•
how have they performed?
•
Do staff members have training and experience in working with children
•
and adolescents with autism?
25 •
How are activities planned and organized?
•
Are there predictable daily schedules and routines?
•
How much individual attention will my child receive?
•
How is progress measured? Will my childʹs behavior be closely observed
•
and recorded?
•
Will my child be given tasks and rewards that are personally motivating?
•
Is the environment designed to minimize distractions?
•
Will the program prepare me to continue the therapy at home?
•
What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states, ʺThirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.ʺ18 The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one‐on‐one child‐teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones. An effective treatment program will build on the childʹs interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the childʹs attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the childʹs earliest teachers, more programs are beginning to train parents to continue the therapy at home. As soon as a childʹs disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles
26 together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.21 Children older than 3 years usually have school‐based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home. In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual childʹs needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher‐ functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions. During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living. All through your childʹs school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your childʹs progress. Dietary and Other Interventions In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double‐blind trials, that would allow for a comparison between treatment and no treatment. Following are
27 some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven. Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the childʹs nutritional status is measured carefully. A diet that some parents have found was helpful to their autistic child is a gluten‐free, casein‐free diet. Gluten is a casein‐like substance that is found in the seeds of various cereal plants—wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten‐free, casein‐ free diet is difficult. A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little.4 In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between patients who received secretin and those who received a placebo.24 Medications Used in Treatment Medications are often used to treat behavioral problems, such as aggression, self‐ injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed ʺoff‐label.ʺ This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.
28 A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the ʺpatient insertʺ that comes with your childʹs medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed. Anxiety and depression. The selective serotonin reuptake inhibitors (SSRIʹs) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive‐compulsive disorder (OCD). Only one of the SSRIʹs, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRIʹs safely, effectively, and at the lowest dose possible. Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems. However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements. Placebo‐controlled studies of the newer ʺatypicalʺ antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH‐supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).Results of the 8‐week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long‐term studies are needed to determine any long‐term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.
29 Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them. Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children. Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your childʹs unique history and behavior will help your doctor decide which medication might be most beneficial.
From : Strock, Margaret (2004). Autism Spectrum Disorders (Pervasive Developmental Disorders). NIH Publication No. NIH‐04‐ 5511, National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
30
Interventions for ASD* Autism responds best to behavioral and educational treatment. Research suggests that early intervention is especially effective in achieving growth in cognitive and communication skills. There are a variety of intervention programs that have been designed specifically to work with children with autism. Parents may hear that one or another of these (such as ʺFloor Time,ʺ ʺFastForWord,ʺ ʺABA,ʺ ʺAuditory Integration Training,ʺ or ʺSocial Storiesʺ) is THE intervention that a child must have to make progress. Unfortunately, there is little evidence to support the claim that any one intervention program will guarantee progress for all children with autism. Like children everywhere, children with autism differ from each other. Like all children, they differ in terms of their IQs, their interests, their strengths, and their educational needs. An intervention program must be individually designed, with the help of experienced professionals, so that it is tailored to the strengths, interests and needs of each child with autism. In general, operant behavioral programs, such as ABA, are often helpful in initiating behaviors the child does not show spontaneously. But operant programs will need to be supplemented by more naturalistic approaches that encourage the child to use newly learned behaviors in real life situations. Successful intervention programs usually involve a mix of highly structured and more naturalistic activities and have the following properties: • • • • • • • •
Individualized Specialized curriculum for children with autism Strong communication component Family involvement Systematic, structured teaching Intensity of engagement (at least 20 hours/week) Developmentally appropriate practice Some contact with typical peers
Parents should be wary of any intervention that promises a cure or suggests that its method is the only effective approach. Parents should also suspect any program that requires parents to personally pay high fees. Children with autism are entitled to public educational services and legitimate services should be provided by public agencies. Parents should not be obligated to pay for educational services themselves. * from: the Yale Child Study Center. Website: http://info.med.yale.edu/chldstdy/autism/pddinfo.html
31
Understanding and Supporting Children with ASD Who are Able to Interact Verbally: More Interventions* Individuals with autism who can converse and verbally interact with others are often misunderstood. It is difficult to realize that they too have a communication impairment that affects all of their interactions. It is imperative that they have positive support and experiences with people, as well as success using their skills in functional, useful, valued ways. These experiences give them an opportunity to build a positive self‐ image. For these individuals, the environments in which they must interact can seem both confusing and motile. The following is a discussion of some of the areas of difficulty, examples of how they are manifested, and some suggestions of ways to help.
Areas of Difficulty Receptive Communication Problems Interpreting what is said literally or assigning very narrow meanings based upon a specific past experience. Misinterpreting idioms and sarcasm. Difficulty understanding nonverbal messages. Expressive Communication Problems Perseveration on topics, themes, words, or particular concerns. Difficulty in initiating and sustaining conversations. Unusual vocal quality. Understanding subtle social messages and rules. Difficulty understanding and interpreting the behaviors of others. May request a concrete rule when one does not exist. Knowing what is appropriate social behavior. Understanding humor. The need for order and predictability. He/she may lack the ability to deal with change and accept uncertainties. May rigidly adhere to rules and expect others to do so. May establish own rules, routines, and rituals. More easily overwhelmed, overstimulated, overloaded. May become extremely anxious when there is an overload. May close down when there is an overload
32
When overwhelmed, may employ compensation strategies that seem odd to others.
How We Can Help The desire to have friends and do what others do is often strong for people with autism who are verbal communicators. This desire often grows as they grow older. Sometimes their experiences have taught them to be very cautious and they turn inward. Sometimes they appear to be very assertive and almost aggressive in stating their point of view. Often it is impossible for them to understand another person’s needs. Therefore, it becomes necessary to teach the social skills that will help them be better at socially interacting with peers, friends, family members, and the community at large. What to teach Complimenting Agreeing Making pleasant comments What to say when there is a pause in conversation Specific rules for specific situations Ways to get more information Negotiation Initiation of sharing Greeting others Looking at what others are doing. This can give him/her information on w hat she/he can be doing. Ways to deal with unpredictable responses and rejection. Specific skills that can then foster friendship by promoting social interaction through the use of that skill. Social/Sexual rules and how they apply to the individual with autism and to the interactions and environments in which the person lives, works, and plays.
Some Specific Suggestions
Some successes have been found with music, spectator sports, and clubs like computer and chess. Active individual sports such as hiking, jogging, walking, swimming, biking, exercise routines, and aerobics have been successful. Turn taking activities in which each turn provides a model for the routine are often enjoyed. These include bowling, computer games, and some board games.
33
The establishment of a peer program so the individual can learn from peers in social contexts. There may need to be several different peers, so one individual is not expected to do too much. There may need to be a reinforcement system for the peer, such as school credit, being tutored by the person with autism in a subject area, or other rewards. The peer will also need feedback from others since he will not get the typical feedback from the person with autism.
General Needs
The need for a mentor or advisor who will help with problem solving any time, any place, about anything. The need for enablers such as written rules, calendars, lists, or appointment books to fall back on as needed.
The need for positive, patient people who take a genuine interest in the individual with autism.
The need for real social experiences in school and in the community (e.g., member of a swim team, going to the local YMCA, part of boy/girl scouts).
Consider real‐life experiences taught and practiced often, such as banking, talking on the phone, and holding part‐time jobs.
* from: The Indiana Resource Center for Autism, Indiana University, Institute for the Study of Developmental Disabilities, 2853 East Tenth Street, Bloomington, IN 47408‐2601 or call (812) 355‐6558. Web: http://www.iidc.indiana.edu/irca/.
34
Research into Causes and Treatment of Autism Spectrum Disorders Research into the causes, the diagnosis, and the treatment of autism spectrum disorders has advanced in tandem. With new well‐researched standardized diagnostic tools, ASD can be diagnosed at an early age. And with early diagnosis, the treatments found to be beneficial in recent years can be used to help the child with ASD develop to his or her greatest potential. In the past few years, there has been public interest in a theory that suggested a link between the use of thimerosal, a mercury‐based preservative used in the measles‐ mumps‐rubella (MMR) vaccine, and autism. Although mercury is no longer found in childhood vaccines in the United States, some parents still have concerns about vaccinations. Many well‐done, large‐scale studies have now been done that have failed to show a link between thimerosal and autism. A panel from the Institute of Medicine is now examining these studies, including a large Danish study that concluded that there was no causal relationship between childhood vaccination using thimerosal‐containing vaccines and the development of an autism spectrum disorder, and a U.S. study looking at exposure to mercury, lead, and other heavy metals. Research on the Biologic Basis of ASD Because of its relative inaccessibility, scientists have only recently been able to study the brain systematically. But with the emergence of new brain imaging tools— computerized tomography (CT), positron emission tomography (PET), single photon emission computed tomography (SPECT), and magnetic resonance imaging (MRI), study of the structure and the functioning of the brain can be done. With the aid of modern technology and the new availability of both normal and autism tissue samples to do postmortem studies, researchers will be able to learn much through comparative studies. Postmortem and MRI studies have shown that many major brain structures are implicated in autism. This includes the cerebellum, cerebral cortex, limbic system, corpus callosum, basal ganglia, and brain stem. Other research is focusing on the role of neurotransmitters such as serotonin, dopamine, and epinephrine.
35
Research into the causes of autism spectrum disorders is being fueled by other recent developments. Evidence points to genetic factors playing a prominent role in the causes for ASD. Twin and family studies have suggested an underlying genetic vulnerability to ASD.29 To further research in this field, the Autism Genetic Resource Exchange, a project initiated by the Cure Autism Now Foundation, and aided by an NIMH grant, is recruiting genetic samples from several hundred families. Each family with more than one member diagnosed with ASD is given a 2‐hour, in‐home screening. With a large number of DNA samples, it is hoped that the most important genes will be found. This will enable scientists to learn what the culprit genes do and how they can go wrong.
36 Another exciting development is the Autism Tissue Program (http://www.brainbank.org), supported by the Autism Society of America Foundation, the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California, Davis, and the National Alliance for Autism Research. The program is aided by a grant to the Harvard Brain and Tissue Resource Center (http://www.brainbank.mclean.org), funded by the National Institute of Mental Health (NIMH) and the National Institute of Neurological Disorders and Stroke (NINDS). Studies of the postmortem brain with imaging methods will help us learn why some brains are large, how the limbic system develops, and how the brain changes as it ages. Tissue samples can be stained and will show which neurotransmitters are being made in the cells and how they are transported and released to other cells. By focusing on specific brain regions and neurotransmitters, it will become easier to identify susceptibility genes. Recent neuroimaging studies have shown that a contributing cause for autism may be abnormal brain development beginning in the infantʹs first months. This ʺgrowth dysregulation hypothesisʺ holds that the anatomical abnormalities seen in autism are caused by genetic defects in brain growth factors. It is possible that sudden, rapid head growth in an infant may be an early warning signal that will lead to early diagnosis and effective biological intervention or possible prevention of autism. For detailed information on autism spectrum disorders research, see NIMH research fact sheet, Autism Spectrum Disorders Research. From: * from: Strock, Margaret (2004). Autism Spectrum Disorders (Pervasive Developmental Disorders). NIH Publication No. NIH‐ 04‐5511, National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
37
Selected State Resources for Information, Training, Advocacy, & Empowerment for Persons with Disabilities & Their Families Arc of Indiana 107 N. Pennsylvania Street, Suite 300 Indianapolis, IN 46204 1‐317‐977‐2375 or 1‐800‐382‐9100 Fax: 1‐317‐977‐2385 www.arcind.org National ‐ The ArcLink: www. thearclink.org State organization with local agencies in many counties across Indiana. Services may vary in each local agency, but the general mission statewide and nationally is to protect the rights of persons with disabilities and to help expand programs for them. Some local agencies provide residential and/or employment services. ATTAIN: Assistive Technology Through Action in Indiana, Inc. 2346 South Lynhurst Drive, Suite 507 Indianapolis, IN 46241 1‐800‐528‐8246 or 1‐317‐486‐8808 Fax: 1‐317‐486‐8809 Relay IN#: 1‐800‐743‐3333 www.attaininc.org Statewide project to increase consumers’ access to assistive technology services. Several sites across the state provide information, outreach training, demonstration, and assistance to find equipment and funding.
38 COVOH: Council of Volunteers and Organizations for Hoosiers with Disabilities, Inc. 445 North Pennsylvania Street, Suite 804 Indianapolis, IN 46204 1‐317‐262‐8632 or 1‐800‐262‐8630(voice/TDD) Fax: 1‐317‐262‐0685 www.acsplus.com/covoh/index.htm A not‐for‐profit coalition of many statewide, regional, and local organizations representing volunteers, advocates, providers, and consumers of programs for people with disabilities. Conducts “Partners in Policymaking” project in Indiana, a program to educate and empower consumers and family members on issues that impact the lives of persons with disabilities. Indiana Department of Education: Division of Exceptional Learners Room 229, State House Indianapolis, IN 46204‐2798 1‐317‐232‐0570 or toll free: 1‐877‐851‐4106 Fax: 1‐317‐232‐0589 http://ideanet.doe.state.in.us/exceptional/ State agency that oversees the implementation of education laws pertaining to students with disabilities ages 3‐21. Disseminates information and materials on topics related to special education to both professionals and family members. Promotes statewide training efforts.
39 Indiana Protection and Advocacy Services (IPAS) 4701 North Keystone, Suite 222 Indianapolis, IN 46205 1‐317‐722‐5555 or 1‐800‐622‐4845 Voice 1‐317‐722‐5563 or 1‐800‐838‐1131 TTY Fax: 1‐317‐722‐5564 www.in.gov/ipas IPAS is an independent state agency established in 1977 to fulfill federal requirements for a state agency staffed to respond to requests to protect the rights of persons with disabilities. IPAS provides information, referral, and technical assistance related to problems that individuals with disabilities face when services or rights are being denied. Indiana Council on Independent Living (ICOIL) c/o DDARS/VR 402 West Washington Street P.O. Box 7083 Indianapolis, IN 46207‐7083 1‐317‐232‐1353 or 1‐800‐545‐7763 Voice 1‐317‐232‐1427 or 1‐800‐545‐7763 TTY Fax: 1‐317‐232‐6478 www.in.gov/fssa/servicedisabl/vr/ilcenters.html ICOIL oversees independent living services throughout the state and works with the Family and Social Services Administration’s Division of Disability, Aging and Rehabilitative Services toward developing a state plan for independent living. Members of ICOIL are appointed by the Governor. There are eight centers for independent living in Indiana that provide advocacy, information and referral, training and peer counseling. Call or check the website listing above to find the CIL that serves your area.
40 Indiana Family and Social Services Administration (FSSA) 402 West Washington Street P.O. Box 7083 Indianapolis, IN 46207‐7083 1‐317‐233‐4454 Fax: 1‐317‐233‐4693 www.in.gov/fssa/ Indiana Family and Social Services Administration was established in 1992. The state departments of Human Services, Public Welfare, and Mental Health were combined under one roof to form FSSA. There are four divisions of FSSA, three of which are: (1) Division of Disability Aging and Rehabilitative Services; (2) Division of Family and Children; and (3) Office of Medicaid Planning and Policy. IFSSA is a statewide agency with local offices serving all counties in the state. To locate/access information and services from the office nearest you, contact the following agencies at the following numbers: 1.
Division of Disability Aging and Rehabilitative Services (DDARS): Information 1‐317‐232‐7000 or 1‐800‐545‐7763 www.in.gov/fssa/servicedisabl/ddars Bureau of Developmental Disabilities Services (BDDS): 1‐317‐232‐7902 or 1‐800‐545‐7763 www.in.gov/fssa/servicedisabil/ddars/bdds.html
Provides diagnostic/evaluation services for preschoolers and adults with disabilities and for those in need of residential services. Case management services and information on Medicaid Waivers is available. BDDS is the main entry point for applications for the Developmentally Disabled (DD), Autism and Support Services Medicaid Waivers. Call toll free to ask for the phone number and location of the BDDS Field Service Office for your county. For more information on Medicaid Waivers see: www.in.gov/fssa/elderly/medicaid/index.html 2. Division of Family and Children (DFC): Information: 1‐317‐232‐4704 www.in.gov/fssa/children/dfc/index.html
41 Bureau of Child Development First Steps 402 W Washington Street, Room W‐386 Indianapolis, IN 46204‐2739 1‐317‐232‐1144 or 1‐800‐441‐7837 www.in.gov/fssa/first_step First Steps early intervention services is a family‐centered, coordinated system available for children birth to age 3 who are developmentally delayed or at risk of a developmental delay. The First Steps program can provide assessment and evaluation of a child before their 3rd birthday. A service coordinator then helps the families of eligible children find appropriate services at no cost to the family. Call the toll free number to ask for the First Steps contact for you county or look in the business section of your local phone book for the local contact phone number. Bureau of Family Resources Administers various social service programs to eligible low‐income families. For assistance, contact the local county Division of Family and Children Office. www.in.gov/fssa/families/resources Bureau of Family Protection and Preservation Serves children who are at risk for abuse or neglect. Healthy Families is a program providing screening and assessments as well as referral and home visiting services. For more information, contact the local county Division of Family and Children Office. www.in.gov/fssa/families/protection 3. Office of Medicaid Planning & Policy (OMPP) Finances medical services for low‐income eligible Indiana residents regardless of a disability. To apply for regular Medicaid, contact your local county Division of Family and Children Office. www.indianamedicaid.com
42 Indiana Governor’s Planning Council for People with Disabilities (GPC) Harrison Building, Suite 628 150 West Market Street Indianapolis, IN 46204 1‐317‐232‐7770 Voice: or TTY: 1‐317‐232‐7771 Fax: 1‐317‐233‐3712 www.in.gov/gpcpd Independent state agency that disseminates federal funds to support planning, collaboration, research, and advocacy to empower individuals with disabilities and their families. Writes and disseminates a free newsletter. Also develops and disseminates information on topics related to disability issues. Maintains a Consumer Investment Fund that provides funds for individuals with disabilities and family members to attend training events. Indiana State Department of Health 2 North Meridian Street Indianapolis, IN 46204 1‐317‐233‐1325 or 1‐800‐433‐0746 Voice Helpline 1‐866‐275‐1274: TTY/TDD Fax: 1‐317‐233‐1299 www.in.gov/isdh/ Maintains the Indiana Family Helpline that provides information on various programs, including the Children with Special Health Care Needs program, support groups, and Medicaid providers list. Assists with accessing health related programs and services. IN*SOURCE (Indiana Resource Center for Families with Special Needs) 809 North Michigan South Bend, IN 46601 1‐574‐234‐7101 or 1‐800‐332‐4433 Fax: 1‐574‐234‐7279 www.insource.org Maintains the Indiana’s Family Involvement Fund that provides families with financial help to attend training events. Offers free parent training and information throughout
43 the state of Indiana. Writes and disseminates a free newsletter. Maintains list of trained parent representatives in local communities. IPIN: Indiana Parent Information Network 4755 Kingsway Drive, Suite 105 Indianapolis, IN 46205 1‐317‐257‐8683 or 1‐800‐964‐IPIN Fax: 1‐317‐251‐7488 www.in.gov/ipin Organization supporting families of persons with special needs with free information on disabilities, laws, education, social services, private insurance and Medicaid issues, and resources throughout Indiana. Writes and disseminates a free newsletter. Many inexpensive training workshops offered to parents. Indiana Institute on Disability and Community 2853 East Tenth Street Bloomington, IN 47408‐2696 1‐812‐855‐6508 or TTY: 1‐812‐855‐9396 Dial‐IN: (Disability Information Access Line for Indiana) 1‐800‐437‐7924 Fax: 1‐812‐855‐9630 www.iidc.indiana.edu Provides training and technical assistance, develops and disseminates information, and conducts research. The Indiana Institute is focused on building the capacity of local communities and organizations to support individuals with disabilities in typical home, school, early childhood, job, and community settings. The seven centers and the Family and Individual Resources and Support Team at the Indiana Institute work with professionals, family members, and people with disabilities, throughout the state, to address the issues of: early intervention, school improvement and inclusion, transition, employment and careers, aging, planning and policy studies, technology, disability information and referral, autism spectrum disorders, and individual and family perspectives.
44
Autism Society of America Chapters and Parent Support Groups in and around Boone, Clinton, and Hendricks Counties in Indiana Below is a listing of Autism Society of America chapters and additional support groups for parents of children with autism spectrum disorders. Please call the contact person directly to find out about meeting places and schedules, and about the focus of the support group. Certain groups have mailing lists and/or email listservs that you can ask about when you call Autism Southside Support Group 6621 Rosebush Lane Indianapolis, IN 46237 Contact: Lori Boehm 317‐885‐7295
[email protected] Central Indiana Chapter of Autism Society of America P.O. Box 50534 Indianapolis, IN 46250 Contacts: Jennifer Asher 317‐578‐9940 jasher@connections‐inc.net Rich Maier 317‐335‐2485
[email protected] Suzanne Flanders 317‐291‐6272
[email protected] http://www.centralindianaautism.netfirms.com Central Indy Support Group for Parents of Children on the Autistic Spectrum 1832 North Delaware Street Indianapolis, IN 46202 Contact: Janette Smith 317‐926‐3793 (home) 317‐337‐4476 (work)
[email protected] East Central Chapter of the Autism Society of America 2008 West 12th Street Anderson, IN 46016 Contacts: Maria Cote 765‐642‐8520
[email protected] Julie Fredbloom 765‐674‐4358 (Marion)
45 First Fridays Brebeuf Jesuit Preparatory School 2801 West 86th Street Indianapolis, IN 46236 Contact: Susan Hansen 317‐823‐1431
[email protected] Fishers Area Support Group Mothers of Children with Autism (MAC) 12533 Trophy Drive Fishers, IN 46038 Contacts: Lisa Kopka 317‐578‐1709
[email protected] Dawn Ervin 317‐594‐4412 7614 Forest Drive Fishers, IN 46038
[email protected] Lawrence Township ASD Parent Support Group Center for Special Services MSD Lawrence Township 7601 East 56th Street Indianapolis, IN 46226 Contact: Barbara Forgarty 317‐423‐8827
[email protected] Parent Action Group of Hamilton‐Boone‐Madison 1533 Espirit Drive Westfield, IN 46074 Contact: Michelle Trivedi 317‐569‐1235
[email protected] This group consists of parents of children ages 3‐8 who receive educational services through Hamilton‐Boone‐Madison Special Services Cooperative. Tippecanoe County Area Support Group 508 Park Ridge Drive West Lafayette, IN 47906‐1947 Contact: Dorothy Bethel 765‐497‐4673
[email protected]
46
Selected National Resources for Information on Autism Spectrum Disorders The Advocate Newsletter Autism Society of America, Inc. (ASA) 7910 Woodmont Avenue, Suite 300 Bethesda, Maryland 20814‐9015 Phone: (800) 323‐8476 Fax: (301) 657‐0869 Subscription is by membership to Autism Society of America, Inc.: $25.00 for individuals, $35.00 for families. Also provides various packets of information related to autism. www.autism‐society.org Autism Resources www.autism‐resources.com Offers information and links regarding Autism Spectrum Disorders. Web pages maintained by John Wobus The MAAP Newsletter (More Advanced Individuals with Autism, Asperger Syndrome, and Pervasive Developmental Disorders) MAAP Services, Inc. P.O. Box 524 Crown Point, IN 46307 $20.00 subscription for a quarterly newsletter for individuals in U.S. Phone: (219) 662‐1311 Fax: (219) 662‐0638 www.maapservices.org Email:
[email protected] The Source Newsletter ASC‐U.S. (Asperger Syndrome Coalition of the United States, Inc.) PO Box 49267 Jacksonville, FL 32240‐9267 Phone: (904) 745‐6741 Email:
[email protected] www.aspergers.org Subscription is by membership to ASC‐US: $35.00 for quarterly publication.
47
Selected Resources by and for Siblings and Peers Family Resource Associates, Inc. 35 Haddon Avenue Shrewsbury, NJ 07701 Phone: (732) 747‐5310 Quarterly newsletters: For Siblings Only (ages 4‐9) and Sibling Forum (ages 10 & up). www.techconnection.org/index.htm Email:
[email protected] The Sibling Information Network The University of Connecticut A.J. Pappanikou Center 249 Glenbrook Road Storns, CT 06269‐2964 Phone: (203) 648‐1205 Quarterly newsletter subscription, and specific newsletter SIBPAGE (ages 5‐ 15) 1 year subscription $8.50. www.parentsoup.com The Sibling Support Project, CL‐09 Childrenʹs Hospital and Medical Center 4800 Sand Point Way, N.E. Seattle, WA 98105 Phone: (206) 368‐4911 Fax: (206) 368‐4816 www.chmc.org/departmt/sibsupp Email:
[email protected] (The NASP Newsletter) Videos: Just Call Him Matthew. (1992). VHS format; 26 minutes. Produced by Mountain Productions, New Mexico; (505) 291‐9284. Young brothers and sisters of children with autism speak openly about their feelings and experiences.
48 Brothers and Sisters on Siblings with Developmental Disabilities. (1989). VHS format; 20 minutes. Produced by YARC Sibling Support, Waisman Center, Madison, Wisconsin. Older siblings discuss their experiences, joys, and disappointments concerning their brothers and sisters with disabilities. Brothers and Sisters‐Siblings. (1995). VHS format; 21 minutes. Society of British Columbia. Narrated by a teenage sister. Visits with a variety of siblings and their families who discuss the challenges and rewards of having a brother or sister with autism. Sense of Belonging: Including Students with Autism in their School Community. (1997). VHS format; 19:34 minutes. Distributed by Indiana Resource Center for Autism. Illustrates the value of inclusion and importance it plays for the future of all students. Being Friends (1991). VHS format; 8:08 minutes. Produced by the Indiana Resource Center for Autism and WTIU. For use with young children and peers. Straight Talk About Autism: Adolescent Issues (1999). VHS format; 38 minutes. An Attainment Production, P.O. Box 930160 Verona, WI 53593‐ 0160. Phone: (800) 327‐4269; Fax: (800) 942‐3865. Adolescents with autism and their parents discuss openly their feelings and insights about social experiences that are both rewarding and challenging. Booklets: Brothers and Sisters Talk with PACER. (1987). Produced by Parent Advocacy Coalition for Education Rights (PACER), Minneapolis, MN; (612) 827‐2966. Cost is $4.00. Booklet with accounts based on interviews conducted with siblings of children and young adults with disabilities. Views from Our Shoes. (1997). By Donald Meyer. Published by Woodbine House, Bethesda, MD; (800) 843‐7323.
