Attention Deficit Hyperactivity Disorder
What is ADD /ADHD?
The official definition of Attention Deficit Hyperactivity Disorder (ADHD) as it appears in the Diagnostic and Statistical manual of the American Psychiatric Association is: ADHD is a disorder that can include a list of nine specific symptoms of inattention and nine symptoms of hyperactivity / impulsivity.
Individuals with ADHD may know what to do but do not consistently do what they know because of their inability to efficiently stop and think prior to responding, regardless of the setting or task. Characteristics of ADHD have been demonstrated to arise in early childhood for most individuals. This disorder is marked by chronic behaviors lasting at least six months with an onset before seven years of age. At this time four subtypes of ADHD have been defined. These include the following:
1. ADHD--Inattentive type is defined by an individual experiencing at least six of the following characteristics:
• fails to give close attention to details or makes careless mistakes
• difficulty sustaining attention
• does not appear to listen
• struggles to follow through on instructions
• difficulty with organization
• avoids or dislikes requiring sustained mental effort
• often loses things necessary for tasks
• easily distracted
• forgetful in daily activities
2. ADHD--hyperactive/impulsive type is defined by an individual experiencing six of the following characteristics:
• fidgets with hands or feet or squirms in seat
• difficulty remaining seated
• runs about or climbs excessively (in adults may be limited to subjective feeling of restlessness)
• difficulty engaging in activities quietly
• acts as if driven by a motor
• talks excessively
• blurts out answers before questions have been completed
• difficulty waiting in turn taking situations
• interrupts or intrudes upon others.
3. ADHD combined type is defined by an individual meeting both sets of attention and hyperactive/impulsive criteria.
4. ADHD -not otherwise specified is defined by an individual who demonstrated some characteristics but an insufficient number of symptoms to reach a full diagnosis. These symptoms, however , disrupt everyday life.
Children and adults who have ADHD exhibit degrees of inattention or hyperactivity /impulsivity that are abnormal for their ages. They can also exhibit other psychiatric disorder (medically known as comorbidity), along with their ADHD symptoms. Most commonly, these include oppositional defiant or conduct disorder, along with or separate from internalizing disorders, such as anxiety and depression.
Treatment
Treating ADHD children requires a coordinated effort between medical, mental health and educational professionals in conjunctions with parents. A treatment program should include: parent training concerning the nature of ADHD as well as effective behavior management strategies, an appropriate educational program, individual and family counseling when needed, and medication when required.
How is ADHD Diagnosed
While there is no biological or psychological test that makes a definitive diagnosis of ADHD, a diagnosis can be made based on one's clinical history of abnormality and impairment. An evaluation for ADHD will often include assessment of intellectual, academic, social and emotional functioning. Medical examination is also important to rule out low occurring but possible cause of ADHD like symptoms (adverse reactions to medications, thyroid problems, etc.). The diagnostic process must also include gathering date from teachers are well as other adults who may interact on a routine basis with the individual being evaluated.
Education Implications:
Children with ADHD may be eligible for special services under Part B of the Individual with Disabilities Education Act (IDEA). This would apply when a child's ADHD is determined to be a "chronic or acute health problem which adversely affects educational performance." When this condition is true - as it will be for many children with ADHD - the child can be classified as "Other Health Impaired" (OHI), and the school must develop an Individual Education Plan (IEP) that is designed to meet the child's unique educational needs. Before any child is eligible to receive special services, an evaluation is required. For a child who is suspected of having ADHD, the evaluation process will often include having parents and teachers complete standardized behavior rating scales, classroom observations, intellectual and achievement testing, and a medical exam.
Special services for children with ADHD may also be obtained under Section 504, a civil rights law that prohibits discrimination against individuals with disabilities. Like IDEA, Section 504 requires schools to provide children who have disabilities with a free and appropriate public education. Unlike IDEA, however, which stipulates that a child has disabilities that require special education services, Section 504 identifies a qualified person as anyone with a physical or mental impairment that substantially limits one or more major life activities, such as learning. This means that children who do not require special education are still guaranteed access to related services under Section 504, and the school must try to adapt instructional methods to the needs of children with ADHD.
Additional ADHD Resources include:
ADHD --a 24 page booklet from the National Mental Health Institute
Identifying and Treating Attention Deficit Hyperactivity Disorder -- booklet from the US Department of Education
www.aacap.org/cs/adhd_a_guide_for_families/adhd_a_guide_for_families_video click here to watch a video form the American Academy Child and Adolscent Psychiatry Association
Definition: Learning disability is a condition that interferes with a person's ability to receive, process, or communicate information and affects the ability to read, write, speak, or compute math.
Individuals With Disabilities Education Act Definition: Specific learning disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not apply to children who have learning problems that are primarily the result of visual, hearing, or emotional disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.
Causes: This disorder of the central nervous system often runs in families. It can be caused by illness or injury during or before birth and use of drugs and alcohol during pregnancy, premature birth, lack of oxygen at birth, nutritional deficiencies, poison (e.g. lead), abuse, and head injuries.
Characteristics: A student with learning disabilities usually has average or above average intelligence and demonstrates a significant difference between potential (typically measured by an aptitude or intelligence test) and actual achievement. The student may have difficulty in reading, math, speaking,concentration, attention, listening skills, and retaining information. There are different disabilities associated with learning, such as Dysgraphia (difficulty writing and with spelling); dyslexia (language difficulty, often reading); Dyssemia (difficulty with signals, such as social cues); and others.
Prevalence: 10-20 % of U.S. population is estimated to have some form of learning disabilities. Most of those (85-90%)have deficits in language and reading. Boys and girls are both as likely or have learning disabilities. Only 5% of school -aged children in public school with learning disabilities receive special education even though they comprise 50% if entire special education population.
Parent Note: Early diagnosis and intervention and support are critical. Learning disabilities can have a "snowballing" effect resulting from repeated failure that can cause low self-esteem and affect other learning. Most children with learning disabilities are identified in elementary school. If the child seems to have a short attention span, difficulty in following directions, reverses letters and words, is disorganized, and other learning difficulties, a teacher may alert others of the student's challenges. If the family suspects learning disability, it, too, can gather information supporting the diagnosis and present that to the school.
Teaching Strategies for Children with Learning Disabilities
Approaches depend on the specific learning disability. The approach, for instance, with dyslexia, includes individual, systemic, multidisciplinary teaching with use of an alphabetic-phonic system (rather than "whole language" instruction). Specialized instruction methods are available for specific learning disabilities.
Other Classroom Strategies: Typically, students with learning disabilities are in the same classroom as their non disabled peers. Some may spend some time in a resource room as well. Teachers often use textbooks and work sheet of lower readability, taped books, and other adapted materials to accommodate the student. Other useful techniques are oral testing, tutoring, presenting material using different senses (e.g. hearing, sight, touch), and allowing for extra assignment time. Research also indicates that students benefit from exposure to learning strategies, such as paraphrasing, note taking, or error monitoring. In general, students should work in a setting free of distraction, and receive instruction in short, highly structured (e.g., 20-minute)time frames. Parents and peers can be invaluable aids and should be given opportunities to help. In later school years, career training that capitalizes on child's strengths and demands less rigorous academic training might be considered because of relatively high unemployment statistics for recently graduated students with learning disabilities.
Behavior Strategies: Students may be easily distracted and have problems sitting in a seat for long periods of time. If the student continually disrupts other students during independent work time or doesn't complete assignment, make sure the student understands and is able to do assignment. Consider developing a plan that reinforces on-task behavior. Behavior support plans should be started as soon as the student begins displaying behavior challenges, because school failure and illiteracy create a downward cycle of frustration and despair that will make behavior problems escalate. Research indicates that undetected learning disability leads to antisocial behavior, school dropout, poor employment, and involvement with juvenile justice system. Increase sense of confidence to take away tension. Relationship building plans may also be necessary, because youths with learning disabilities tend to have problems socially, display immature behavior, and not learn easily from experiences.
*taken from the Beach Center on Families and Disability
Learning Disabilities Checklist --download brochure
www.ldonline.org --web site, sign up for free newsletter
www.ldanatl.org--National Learning Disabilities Association web site
www.ncld.org-- National Center for Learning Disabilities web site
www.helpguide.org/mental/learning_disabilities.htm--Learning disabilities in children from help guide.org
AUTISM DEFINITION AND CHARACTERISTICS
Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees - this is why early diagnosis is so crucial. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs.
Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”
The term "PDD" is widely used by professionals to refer to children with autism and related disorders; however, there is a great deal of disagreement and confusion among professionals concerning the PDD label. Diagnosis of PDD, including autism, or any other developmental disability, is based upon the Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association, Washington D.C., 1994, and is the main diagnostic reference of Mental Health professionals in the United States of America.
According to the DSM-IV, the term "PDD" is not a specific diagnosis, but an umbrella term under which the specific diagnoses are defined.
Diagnostic labels are used to indicate commonalities among individuals. The key defining symptom of autism that differentiates it from other syndromes and/or conditions is substantial impairment in social interaction (Frith, 1989). The diagnosis of autism indicates that qualitative impairments in communication, social skills, and range of interests and activities exist. As no medical tests can be performed to indicate the presence of autism or any other PDD, the diagnosis is based upon the presence or absence of specific behaviors. For example, a child may be diagnosed as having PDD-NOS if he or she has some behaviors that are seen in autism, but does not meet the full criteria for having autism. Most importantly, whether a child is diagnosed with PDD (like autism) or PDD-NOS, his/her treatment will be similar.
Autism is a spectrum disorder, with symptoms ranging from mild to severe. As a spectrum disorder, the level of developmental delay is unique to each individual. If a diagnosis of PDD-NOS is made, rather than autism, the diagnosticians should clearly specify the behaviors present. Evaluation reports are more useful if they are specific and become more helpful for parents and professionals in later years when reevaluations are conducted.
The five disorders under PDD are:
Autistic Disorder
Asperger's Disorder
Childhood Disintegrative Disorder (CDD)
Rett's Disorder
PPD & PDD-Not Otherwise Specified (PDD-NOS)
Each of these disorders has specific diagnostic criteria which been outlined in the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).
AUTISTIC DISORDER (299.00 DSM-IV)
The central features of Autistic Disorder are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. The manifestations of this disorder vary greatly depending on the developmental level and chronological age of the individual. Autistic Disorder is sometimes referred to as Early Infantile Autism, Childhood Autism, or Kanner's Autism.
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
Marked impairment in the use of multiple nonverbal behaviors such as eye to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
Lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)
In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
Stereotyped and repetitive use of language or idiosyncratic language
Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of object
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
Social interaction
Language as used in social communication
Symbolic or imaginative play
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
ASPERGERS SYNDROME (299.80 DSM-IV)
Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism.
What distinguishes Asperger's Disorder from autism is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.
Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or may show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.
Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.
One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give and take nature of a conversation.
Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with Autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess an average to above average intelligence.
While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward.
The essential features of Asperger's Disorder are severe and sustained impairment in social interaction and the development of restricted, repetitive patterns of behavior, interest, and activity. The disturbance must clinically significant impairment in social, occupational, and other important areas of functioning. In contrast to Autistic Disorder, there are no clinically significant delays in language. In addition there are no clinically significant delays in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior, and curiosity about the environment in childhood.
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
Lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, non-functional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
CHILDHOOD DISINTEGRATIVE DISORDER (299.10 DSM-IV)
The central feature of Childhood Disintegrative Disorder is a marked regression in multiple areas of functioning following a period of at least two years of apparently normal development. After the first two years of life, the child has a clinically significant loss of previously acquired skills in at least two of the following areas: expressive or receptive language; social skills or adaptive behavior; bowel or bladder control; or play or motor skills. Individuals with this disorder exhibit the social and communicative deficits and behavioral features generally observed in Autistic Disorder, as there is qualitative impairment in social interaction, communication, and restrictive, repetitive and stereotyped patterns of behavior, interests, and activities. (Page 73)
A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.
B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
Expressive or receptive language
Social skills or adaptive behavior
Bowel or bladder control
Play
Motor skills
C. Abnormalities of functioning in at least two of the following areas:
Qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
Qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms
D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.
RETT’S DISORDER (299.80 DSM-IV)
The essential feature of Rett's Disorder is the development of multiple specific deficits following a period of normal functioning after birth. There is a loss of previously acquired purposeful hand skills before subsequent development of characteristic hand movement resembling hand wringing or hand washing. Interest in the social environment diminishes in the first few years after the onset of the disorder. There is also significant impairment in expressive and receptive language development with severe psychomotor retardation. (Page 71)
A. All of the following:
Apparently normal prenatal and prenatal development
Apparently normal psychomotor development through the first 5 months after birth
Normal head circumference at birth
B. Onset of all of the following after the period of normal development:
Deceleration of head growth between ages 5 and 48 months
Loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
Loss of social engagement early in the course (although often social interaction develops later)
Appearance of poorly coordinated gait or trunk movements
Severely impaired expressive and receptive language development with severe psychomotor retardation
PERVASIVE DEVELOPMENTAL DISORDER NOT OTHERWISE SPECIFIED-INCLUDING ATYPICAL AUTISM (299.80 DSM-IV)
The essential features of PDD-NOS are: severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; stereotyped behaviors, interests, and activities; and the criteria for Autistic Disorder are not met because of late age onset, atypical and/or sub threshold symptomotology are present.
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypical Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism"-- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or sub threshold symptomatology, or all of these.
Prevalence of Autism
Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise.
Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.
Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child.
And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.
CHARACTERISTICS OF AUTISM
Autism is a spectrum disorder, and although it is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Two children, both with the same diagnosis, can act completely different from one another and have varying capabilities.
You may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled; but more important than the term used to describe autism is understanding that whatever the diagnosis, children with autism can learn and function normally and show improvement with appropriate treatment and education.
Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. They may have difficulty initiating and/or maintaining a conversation. Their communication is often described as talking at others instead of to them. (For example, monologue on a favorite subject that continues despite attempts by others to interject comments).
People with autism also process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:
Insistence on sameness; resistance to change
Difficulty in expressing needs, using gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others
Preference to being alone; aloof manner
Tantrums
Difficulty in mixing with others
Not wanting to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spinning objects
Obsessive attachment to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Non-responsive to verbal cues; acts as if deaf, although hearing tests in normal range.
For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our sense of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach's skin, its sweet smell, and the juices running down your face. For children with autism, sensory integration problems are common, which may throw their senses off they may be over or under active. The fuzz on the peach may actually be experienced as painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors, like the ones listed above, are actually a result of sensory integration difficulties.
There are also many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less often or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.
One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children, they can and do give affection. However, it may require patience on the parents' part to accept and give love in the child's terms.
More information is available on www.autism-society.org
CAUSES, DIAGNOSIS AND TREATMENT OF AUTISM
There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.
Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.
Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Early in 2002, The Agency for Toxic Substances and Disease Registry (ATSDR) prepared a literature review of hazardous chemical exposures and autism and found no compelling evidence for an association; however, there was very limited research and more needs to be done.
The question of a relationship between vaccines and autism continues to be debated. In a 2001 investigation by the Institute of Medicine, a committee concluded that the "evidence favors rejection of a causal relationship.... between MMR vaccines and autistic spectrum disorders (ASD)." The committee acknowledged, however, that "they could not rule out" the possibility that the MMR vaccine could contribute to ASD in a small number of children. While other researchers agree the data does not support a link between the MMR and autism, more research is clearly needed.
Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
DIAGNOSIS AND CONSULTATION
There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.
A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers' and/or teachers) input and developmental history are very important components of making an accurate diagnosis.
Early Diagnosis
Research indicates that early diagnosis is associated with dramatically better outcomes for individuals with autism. The earlier a child is diagnosed, the earlier the child can begin benefiting from one of the many specialized intervention approaches treatment and education.
Diagnostic Tools
The characteristic behaviors of autism spectrum disorders may or may not be apparent in infancy (18 to 24 months), but usually become obvious during early childhood (24 months to 6 years).
As part of a well-baby/well-child visit, your child's doctor should do a "developmental screening" asking specific questions about your baby's progress. The National Institute of Child Health and Human Development (NICHD) lists five behaviors that signal further evaluation is warranted:
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 two-word phrases on his or her own by 24 months
Has any loss of any language or social skill at any age.
Having any of these five "red flags" does not mean your child has autism. But because the characteristics of the disorder vary so much, a child showing these behaviors should have further evaluations by a multidisciplinary team. This team may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.
Screening Instruments
While there is no one behavioral or communications test that can detect autism, several screening instruments have been developed that are now being used in diagnosing autism:
CARS rating system (Childhood Autism Rating Scale), developed by Eric Schopler in the early 1970s, is based on observed behavior. Using a 15-point scale, professionals evaluate a child's relationship to people, body use, adaptation to change, listening response, and verbal communication.
The Checklist for Autism in Toddlers (CHAT) is used to screen for autism at 18 months of age. It was developed by Simon Baron-Cohen in the early 1990s to see if autism could be detected in children as young as 18 months. The screening tool uses a short questionnaire with two sections, one prepared by the parents, the other by the child's family doctor or pediatrician.
The Autism Screening Questionnaire is a 40 item screening scale that has been used with children four and older to help evaluate communication skills and social functioning.
The Screening Test for Autism in Two-Year Olds is being developed by Wendy Stone at Vanderbilt and uses direct observations to study behavioral features in children under two. She has identified three skills areas that seem to indicate autism - play, motor imitation, and joint attention.
CONSULTING WITH PROFESSIONALS
Whether you or your child's pediatrician is the first to suspect autism, your child will need to be referred to someone who specializes in diagnosing autism spectrum disorders. This may be a developmental pediatrician, a psychiatrist or psychologist, and other professionals that are better able to observe and test your child in specific areas.
This multidisciplinary assessment team may include some or all of the following professionals (they may also be involved in treatment programs):
Developmental pediatrician - Treats health problems of children with developmental delays or handicaps.
Child psychiatrist - A medical doctor who may be involved in the initial diagnosis. He/she can also prescribe medication and provide help in behavior, emotional adjustment and social relationships).
Clinical psychologist - Specializes in understanding the nature and impact of developmental disabilities, including autism spectrum disorders. May perform psychological and assessment test, as well as help with behavior modification and social skills training.
Occupational therapist - Focuses on practical, self-help skills that will aid in daily living such as dressing and eating. May also work on sensory integration, coordination of movement, and fine motor skills.
Physical therapist - Helps to improve the use of bones, muscles, joints, and nerves to develop muscle strength, coordination and motor skills.
Speech/language therapist - Involved in the improvement of communication skills, including speech and language.
Social Worker - May provide counseling services or act as case manager helping to arrange services and treatments.
It is important that parents and professionals work together for the child's benefit. While professionals will use their experience and training to make recommendations about your child's treatment options, you have unique knowledge about his/her needs and abilities that should be taken into account for a more individualized course of action.
Once a treatment program is in place, communication between parents and professionals is essential in monitoring the child's progress. Here are some guidelines for working with professionals:
Be informed. Learn as much as you can about your child's disability so you can be an active participant in determining care. If you don't understand terms used by professionals, ask for clarification.
Be prepared. Be prepared for meetings with doctors, therapists, and school personnel. Write down your questions and concerns, and then note the answers.
Be organized. Many parents find it useful to keep a notebook detailing their child's diagnosis and treatment, as well as meetings with professionals.
Communicate. It's important to ensure open communication - both good and bad. If you don't agree with a professional's recommendation, speak up and say specifically why you don't.
Often, the time immediately after the diagnosis is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, you can learn to help your child find the world an interesting and loving place.
TREATMENT
Discovering that your child has autism can be an overwhelming experience. For some, the diagnosis may come as a complete surprise; others may have suspected autism and tried for months or years to get an accurate diagnosis. In either case, you probably have many questions about how to proceed. A generation ago, many people with autism were placed in institutions. Professionals were less educated about autism than they are today and specific services and supports were largely non-existent. Today the picture is much more clear. With appropriate services, training, and information, children with autism will grow and can learn, even if at a different developmental rate than others.
While there is no cure for autism, there are treatment and education approaches that may reduce some of the challenges associated with the disability. Intervention may help to lessen disruptive behaviors, and education can teach self-help skills that allow for greater independence. But just as there is no one symptom or behavior that identifies autistic children, there is no single treatment. Children can learn to function within the confines of their disability, but treatment must be tailored to the child's individual behaviors and needs.
Remember, the purpose of this section is to provide a general overview of available approaches, not specific treatment recommendations. Keep in mind that the word "treatment" is used in a very limited sense. While typically used for children under 3, the approaches described herein may be included in an educational program for older children as well.
It is important to match your child's needs and potential with treatments or strategies that are likely to be effective in moving him/her closer to normal functioning. We do not want to give the impression that you will select one item from a list of available treatments. You should move forward in your search for appropriate treatment knowing that you do not have to exclude other options, and that all treatment approaches are not equal. The basis for choosing any treatment plan should come from a thorough evaluation of the strengths and weaknesses observed in the child.
It is important that you understand your options by knowing the different programs available and how to evaluate the different approaches.
UNDERSTANDING YOUR OPTIONS
Treatment approaches are evolving as more is learned about autism. There are many therapeutic programs, both conventional and complementary, that focus on replacing dysfunctional behaviors and developing specific skills.
As a parent, it's natural to want to do something immediately. However, it is important not to rush in with changes. Your child may have already learned to cope with his or her current environment and changes could be stressful. You should investigate various treatment approaches and gather information concerning various options before proceeding with your child's treatment.
You will encounter numerous accounts from parents about successes and failures with many of the treatment approaches mentioned. You will also discover that professionals differ in their theories of what they feel is the most successful treatment for autism. It can be frustrating! But you will learn to sift through them and make rational, educated decisions on what is appropriate for your child. You live with your child every day and you know his/her needs. And in time, you will come to know his/her autism. Trust your instincts as you explore various options.
Again, please keep in mind that the descriptions of treatment approaches provided here are for informational purposes only. They are meant to give you an overview of an approach. The Autism Society of America does not endorse any specific treatment or therapy.
During your research, you will hear about many different treatments approaches, such as auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy, and sensory integration. These approaches can generally be broken down into three categories:
Learning Approaches
Dietary Approaches
Complementary Approaches
Some of these treatment approaches have research studies that support their efficacy; others may not. Some parents will only want to try treatment methods that have undergone research and testing and are generally accepted by the professional community. But keep in mind that scientific studies are often difficult to do since each individual with autism is different.
For others, formal testing might not be a pre-requisite for them to try a treatment with their child. Even for those with "scientific" proof, we recommend that the family or caregiver investigate all options available to determine the appropriateness to their child.
Experts agree though, that early intervention is important in addressing the symptoms associated with autism. The earlier treatment is started, the better the chance the child will reach normal functioning levels. Many of the approaches described can be used on children as young as age 2 or 3. They may also continue to be used in conjunction with special education programs or traditional elementary school for children who are mainstreamed.
LEARNING APPROACHES
The behaviors exhibited by children with autism are frequently the most troubling to parents and caregivers. These behaviors may be inappropriate, repetitive, aggressive and/or dangerous, and may include:
Hand-flapping
Finger-snapping
Rocking
Placing objects in one's mouth
Head-banging
Children with autism may also engage in self-mutilation, such as eye gouging or biting their arms; they may show little or no sensitivity to burns or bruises; and may physically attack someone without provocation. The reasons for these behaviors are complex, but some professionals think that sensory integration issues contribute to them.
Communication skills, both the spoken and written word, are also an issue for children with autism. They have difficulty understanding how communication works and may have difficulty with reciprocal conversation. Many also have language difficulties, either being nonverbal throughout their lives or having delayed speech. Some children use language in unusual ways, such as repeating the words or sentences said to them (echolalia) or using only single words to communicate. Language difficulties may contribute to behavioral problems a child with autism may resort to screaming (because of an inability to use language to communicate his/her needs).
Many treatment approaches have been developed to address the range of social, language, sensory, and behavioral difficulties. Some of the treatment approaches include:
Applied Behavior Analysis (ABA)-- based on the theory that behavior rewarded is more likely to be repeated than behavior ignored.
Treatment & Education of Autistic and Related Communication of Handicapped Children (TEACCH)-- uses a structured teaching approach based on the idea that the environment should be adapted to the child with autism, not the child to the environment.
Picture Exchange Communication Systems (PECS)—an augmented communication program that is helpful to get language started as well as to provide a way of communicating for those children that do not talk.
Pivotal Response Treatment-- is a naturalistic intervention model producing positive changes in critical behaviors, leading to generalized improvement in communication, social, and behavioral areas. It targets individual behaviors one at a time and also targets pivotal areas of a child's development
Floor Time-- builds an increasingly larger circle of interaction between a child and an adult in a developmentally based sequence by following the child's lead and building on what the child does to encourage more interactions.
Social Stories-- Through a story developed about a particular situation or event, the child is provided with as much information as possible to help him or her understand the expected or appropriate response
Sensory Integration-- focuses on desensitizing the child and helping him or her reorganize sensory information
Facilitated Communication-- involves a facilitator who, by supporting an individual's hand or arm, helps the person communicate through the use of a computer or typewriter
BIOMEDICAL AND DIETARY APPROACHES
Because autism is a spectrum disorder and no one method alone is usually effective in treating autism, professionals and families have found that a combination of treatments may be effective in treating symptoms and behaviors that make it hard for individuals with autism to function. These may include psychosocial and pharmacological interventions.
While there are no drugs, vitamins or special diets that can correct the underlying neurological problems that seem to cause autism, parents and professionals have found that some drugs used for other disorders are sometimes effective in treating some aspects of behaviors associated with autism.
Changes to diet and the addition of certain vitamins or minerals may also help with behavioral issues. Over the past 10 years, there have been claims that adding essential vitamins such as B6 and B12 and removing gluten and casein from a child's diet, may improve digestion, allergies and sociability. Not all researchers and experts agree about whether these therapies are effective or scientifically valid.
COMPLEMENTARY APPROACHES
While early educational intervention is key to improving the lives of individuals with autism, some parents and professionals believe that other treatment approaches may play an important role in improving communications skills and reducing behavioral symptoms associated with autism. These complementary therapies may include music, art or animal therapy and may be done on an individual basis or integrated into an educational program. All of them can help by increasing communication skills, developing social interaction, and providing a sense of accomplishment. They can provide a non-threatening way for a child with autism to develop a positive relationship with a therapist in a safe environment.
Art and music are particularly useful in sensory integration, providing tactile, visual and auditory stimulation. Music therapy is good for speech development and language comprehension. Songs can be used to teach language and increase the ability to put words together. Art therapy can provide a nonverbal, symbolic way for the child with autism to express him or herself.
Animal therapy may include horseback riding or swimming with dolphins. Therapeutic riding programs provide both physical and emotional benefits, improving coordination and motor development, while creating a sense of well-being and increasing self-confidence. Dolphin therapy was first used in the 1970s by psychologist David Nathanson. He believed that interactions with dolphins would increase a child's attention, enhancing cognitive processes. In a number of studies, he found that children with disabilities learned faster and retained information longer when they were with dolphins, compared to children who learned in a classroom setting.
As with any therapy or treatment approach, it is important to gather information about the treatment and make an informed decision. Keep in mind however, as with most complementary approaches, there will be little scientific research that has been conducted to support the particular therapy.
PROGRAMS FOR CHILDREN UNDER 3
If your child is younger than 3 years old, he or she is eligible for "early intervention" assistance. This federally funded program is available in every state, but may be provided by different agencies. Contact one of the ASA chapters in your area for more specific information or obtain a state resource sheet from the National Information Center for Children and Youth with Disabilities from your state referral.
This early education assistance may be available to you in two forms: home-based or school-based. Home-based programs generally assign members of an early intervention team to come to your home to train you and educate your child. School-based programs may be in a public school or a private organization. Both of these programs should be staffed by teachers and other professionals who have experience working with children with disabilities specifically autism. Related services should also be offered, such as speech, physical or occupational therapy, depending on the needs of each child. The program may be only for children with disabilities or it may also include non-challenged peers.
PROGRAMS FOR SCHOOL AGED CHILDREN
From the age of 3 through the age of 21, your child is guaranteed a free appropriate public education supplied by your local education agency. The Individuals with Disabilities Education Act (IDEA) is a federal mandate that guarantees this education. Whatever the level of impairment, the educational program for an individual with autism should be based on the unique needs of the student, and thoroughly documented in the IEP (Individualized Education Program). If this is the first attempt by the parents and the school system to develop the appropriate curriculum, conducting a comprehensive needs assessment is a good place to start. Consult with professionals well versed in autism disorders about the best possible educational methods that will be effective in assisting the student to learn and benefit from his/her school program. Educational programming for students with autism often addresses a wide range of skill development, including: academics, language, social skills, self-help skills, behavioral issues, and leisure skills.
As a parent, you can and should be an active and equal participant in deciding on an appropriate educational plan for your child. You know your child best and can provide valuable information to teachers and other professionals who will be educating your child. Collaboration between parents and professionals is essential open communication can lead to better evaluation of a student's progress.
To learn about other services specific to your area, you may wish to contact resources in your community, such as your local ASA chapter, a local university affiliated program for developmental disabilities, the local chapter of the Association for Retarded Citizens, Easter Seals, or the local developmental disabilities council. If you decide to contact any of these agencies, please keep in mind that it may take days or weeks to find the information you need.
EDUCATION AND YOUR CHILD WITH AUTISM
When you have a child with a disability, it may seem that you've been dropped in the middle of a whirlwind of information and buzzwords. You'll hear things such as inclusion, behavior modification, functional analysis, IDEA, IEP, due process, evaluation and sensory integration. There are lengthy federal regulations that need to be read and understood, and disability magazines filled with one view or another about controversial issues. Some of the decisions you'll need to make may come from areas where you don't feel adequately informed. Of these important decisions, many will be in the area of education.
Educating children with autism is a challenge for both parents and teachers. These children are individuals first and foremost with unique strengths and weaknesses. Some may be of average to above average intelligence, while others may be below average. Academic goals need to be tailored to that individual's intellectual ability and functioning level. Some areas you will need to learn about include:
Unique Needs & Abilities
IDEA (Individuals with Disabilities Education Act)
IEP (Individualized Education Plan)
UNIQUE NEEDS AND ABILITIES
Just as there are various treatment approaches, there are multiple educational programs that provide stimulating learning environments. The Individuals with Disabilities Education Act (IDEA) is a federal mandate that guarantees students with disabilities a free, appropriate public education. The education plan for a student with disabilities can include "related services".
The common thread in autism is the presence of a developmental disability, more specifically, a disorder of communication which manifests itself differently in each person. But whatever the level of impairment, the educational program for an individual with autism should be based on the unique needs of the student. If this is the first attempt by the parents and school system to develop an appropriate curriculum, conducting a comprehensive needs assessment is a good place to start. This evaluation will become the blueprint for your child's educational plan.
Educational planning for students with autism often addresses a wide range of skill development, including academics, communication and language skills, social skills, self-help skills, behavioral issues, and leisure skills. It's important to consult with professionals trained specifically in autism to help your child benefit from his/her school program. But keep in mind, even the most well-intentioned advice may generate inappropriate curriculum models and impair the child's ability to develop to his/her fullest potential. That's why it's important to get a wide range of opinions and keep a close eye on your child's progress or lack thereof.
Most professionals agree that individuals with autism respond well to highly structured, specialized education programs designed to meet the individual's needs. Based on the major characteristics associated with autism, there are areas that are important to look at when creating a plan: social skill development, communication, behavior, and sensory integration. Programs sometimes include several treatment components coordinated to assist a person with autism. For example, one individual's program may consist of speech therapy, social skill development and the use of medication, all within a structured behavior program. Another child's may include social skill development, sensory integration and dietary changes. No one program or diet is perfect for every person with autism. It's important to try several approaches and find the ones that work best on an individual basis.
With all of that said, parents and professionals need to work together. Teachers should have some understanding of the child's behavior and communication skills at home, and parents should let teachers know about their expectations as well as what techniques work at home. Open communication between school staff and parents can lead to better evaluation of a student's progress. Community goals like purchasing meals and grocery shopping should be reinforced through work at school, just as parents' goals for their child outside of school, such as the development of leisure activities, should be reinforced. Cooperation between parents and professionals can lead to increased success for the individual with autism.
Academic goals need to be tailored to the individual's intellectual ability and functioning level. Some children may need help in understanding social situations and developing appropriate responses. Others may exhibit aggressive or self-injurious behavior, and need assistance managing their behaviors. No one program will meet the needs of all individuals with the disability, so it is important to find the program or programs that best fit your child's needs. Just like with treatment approaches, educational programs should be tailored to your child's individual needs, be flexible and be re-evaluated on a regular basis.
IDEA (INDIVIDUALS WITH DISABILITIES EDUCATION ACT)
To understand your child's rights in America's public schools, it helps to start with one of the primary laws governing the education of children with disabilities: the Individuals with Disabilities Education Act (P.L. 101-476). IDEA is a federal law that guarantees a free and appropriate public education for every child with a disability. This means that if you enroll your child in public school, his/her education should be at no cost to you and should be appropriate for his/her age, ability and developmental level. IDEA is an amended version of the Education for All Handicapped Children Act (P.L. 94-142), passed in 1975. In 1997, IDEA was reauthorized (P.L. 105-17), further defining children's rights to educational services and strengthening the role of parents in the educational planning process for their children.
Getting a copy of IDEA
Copies of the IDEA law and/or regulations are available by calling the Parent Mentor Office at 513-420-4620 or visit www.ode.state.oh.us/gd and click on support and services. You can also visit the Web site www.wrightslaw.com for more information on the law and its regulations.
IDEA has both statutes and regulations. The IDEA statute is the governing legislation - the language of the law, and the regulations are an explanation of how the law is to be enacted. The law explains what conditions exist; the regulations explain how these conditions are applied.
Individualized Education Plan (IEP)
The Individualized Education Plan (IEP) is a written document that outlines a child's education. As the name implies, the educational program should be tailored to the individual student to provide maximum educational benefit. The key word is individual. A program that is appropriate for one child with autism may not be appropriate for another.
The IEP is the cornerstone for the education of a child with a disability. It should identify the services a child needs so that he/she may grow and learn during the school year. It is also a legal document that outlines:
The child's special education plan by defining goals for the school year
Services needed to help the child meet those goals
A method of evaluating the student's progress
The objectives, goals and selected services are not just a collection of ideas on how the school may educate a child. The school district must educate your child in accordance with the IEP.
To develop an IEP, the local education agency officials and others involved in the child's educational program meet to discuss education related goals. By law, the following people must be invited to attend the IEP meeting:
One or both of the child's parents
The child's teacher or prospective teacher
A representative of the public agency (local education agency), other than the child's teacher, who is qualified to provide or supervise the provision of special education
The child, if appropriate
Other individuals at the discretion of the parent or agency (such as a physician, advocate, or neighbor)
With the 1997 Reauthorization of IDEA (P.L. 105-17) and IDEIA 2004, parents now must be included as "members of any group that makes decisions on the educational placement of the child." IEP meetings must be held at least annually, but may be held more often if needed. Parents may request a review or revision of the IEP at any time. While teachers and school personnel may come prepared for the meeting with an outline of goals and objectives, the IEP is not complete until it has been thoroughly discussed and all parties agree to the written document.
Parents are entitled to participate in the IEP meeting as equal participants with suggestions and opinions regarding their child's education. They may bring a list of suggested goals and objectives, as well as additional information that may be pertinent, to the IEP meeting.
The local education agency (LEA) must attempt to schedule the IEP meeting at a time and place agreeable to both school staff and parents. School districts must notify parents in a timely manner so that they will have an opportunity to attend. The notification must indicate the purpose of the meeting (i.e. to discuss transition services, behavior problems interfering with learning, academic growth).
Parents may encounter stipulations presented by school personnel that may not necessarily be supported by the provisions of the IDEA. Some statements have included:
"IEPs must be a predetermined number of pages."
"IEPs are to be completed without parental input and only a certain number of goals and objectives are allowed on the IEP."
"If your objective doesn't fit into the field length on our computer program, it can't be included."
There is nothing in the federal law that supports these types of statements or stipulations. While parents should not accept misinformation concerning the IEP, you don't need to approach the parent/school relationship in an adversarial manner. It is in everyone's best interest to remember that both parents and teachers share a common goal: to develop a program that will be appropriate for the child with autism. By sharing information and knowledge, parents and schools can collaborate to develop a truly effective IEP.
The demands of raising a child with autism are great, and families frequently experience high levels of stress. Recognizing and preparing yourself for the challenges that are in store will make a tremendous difference to all involved, including the parents, siblings, grandparents, extended family, and friends.
The uniqueness of each individual with autism makes the experience of raising a child with autism different for each family. But there are some consistent themes or issues that most families will want to be aware to be able to provide the best support to the individual and to family members.
The ASA has developed in-depth information on a variety of topics related to living with autism. The information below is by no means exhaustive, but it should help to equip families with some of the basic tools they may need to successfully raise a child with autism.
Stress on Families
Stress - something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child's well-being. When a family has a child diagnosed with autism, unique stressors are added. Some sources of stress for families include:
Deficits and Behaviors of Autism: Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she is thirsty, hungry, or sick? When the parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self-injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning.
A child's deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining.
However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.
Reactions from Society and Feelings of Isolation: Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.
Concerns Over Future Care giving: One of the most significant sources of stress is the concern regarding future care giving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.
Finances: Having a child with autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the care giving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families' needs.
Feelings of Grief: Parents of children with autism are grieving the loss of the "typical" child that they expected to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (e.g., birthdays, holidays, unending care giving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.
Sources of Stress for Siblings
There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:
Embarrassment around peers. Jealousy regarding amount of time parents spend with their brother/sister
Frustration over not being able to engage or get a response from their brother/sister
Being the target of aggressive behaviors
Trying to make up for the deficits of their brother/sister
Concern regarding their parents stress and grief
Concern over their role in future care giving
Sources of Stress for Grandparents
Like parents, grandparents can grieve over the loss of the "typical" grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing.
Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and "spoil" them to death. Unfortunately, autism prevents them from achieving either of these desires.
What Can Be Done To Address Family Stress
Luckily, parents can take action to address the stress that they experience. I acknowledge that accessing services or doing any additional tasks can be overwhelming, considering what family members are already dealing with on a daily basis. However, remember that it is only by taking action that challenges can be directly tackled. Below are some suggestions for family members to get started with in enhancing their family functioning.
Take Time For Yourself and Other Family Members
In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don't have any time to do that. However, what you need to keep in mind is that even a few minutes a day can make a difference. Some parents just do such simple things as apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children with autism have even more of a need to reward themselves, because parenting their child is often frustrating and stressful.
In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for lunch when the children are in school.
Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.
Network With Other Families Affected by Autism or Another Disability
It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advise from others struggling with the same challenges. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, autism societies and Developmental Disabilities Offices. In addition, there are now online supports available for family members.
Other Strategies to Address Stress
When it comes to reducing stress, be creative. You may want to consider one or more of the following approaches:
Prayer
Exercise
Deep breathing / relaxation exercises
Writing in a journal
Keeping a daily schedule of things to accomplish
Advocacy
Individual, marital or family counseling
If you or a family member is exhibiting signs of stress, you need to take action. Even if it takes the last bit of energy you have left, getting assistance can only make things get better. Yes, waiting lists, burdensome paperwork and bureaucracy can make accessing supports stressful but in the long run, it will be worth it.
Note: This section was provided by Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children.
Raising a child with autism places some extraordinary demands on parents as individuals and on the family as a whole. Prime among these demands is the lack of enough hours in the day to do all one wishes. The time involved in meeting the needs of a family member with autism may leave parents with little time for their other children.
Many parents indicate that even as they do all they can for their child with autism, they are always struggling with how best to respond to the needs of the family as a whole. They say that although their own life as an individual may be put "on hold" and a couple may share an understanding of the need to make sacrifices on behalf of their child with autism, few parents are willing to make that same demand of other children in the family. As a result, there is a continual tension between the needs of the child with autism and the other children.
This section offers suggestions to parents about ways to help the other children in the family cope gracefully and effectively with the experience of having a brother or sister with autism. Research indicates that the majority of brothers and sisters of children with autism cope well with their experiences. That does not mean, however, that they do not encounter special challenges in learning how to deal with a sibling who has autism or a related disorder.
There are special demands on siblings, and learning how to manage these demands will make their childhood easier and will teach them skills that will make them more effective and resilient adults. The most important teachers of these coping skills are a child's mother and father. The gifts you give to your youngsters in childhood will serve them immediately, and in all the years ahead.
Many of the suggestions provided here are things that parents can do within the family to help a child understand what autism is all about, to improve the interactions among the children in the family, and to ensure that brothers and sisters grow up feeling they have benefited from the love and attention we all so much need.
Explaining Autism to Children
Common sense tells us and research supports the idea that children need to understand what autism is all about. The rule of thumb: Do it early and do it often! It is important that your children know about autism and that the information you give them is appropriate for their developmental age. From early childhood, they need explanations that help them understand the behaviors that are of concern to them. For the preschool, child this may be as simple as "Rick doesn't know how to talk," while for the adolescent, it may involve a conversation about the possible genetics of autism.
The key is to remember to adjust your information to your child's age and understanding. For example, very young children are mostly concerned about unusual behaviors that may frighten or puzzle them. An older child will have concerns of a more interpersonal nature, such as how to explain autism to his or her friends. For the adolescent, these concerns may shift to the long-range needs of their sibling with autism and the role they will play in future care. Every age has its needs, and your task is to listen carefully to your child's immediate concerns.
Another key to success is to remember that children need to be told about autism again and again as they grow up. Young children may use the words they hear us use, but not understand the full meaning of those words until they are much older. Don't be mislead by a young child's vocabulary of words like "autism" or "discrete trial." That does not mean the terms have real meaning for him or her. Just as you would not expect an early conversation about the obvious physical differences between boys and girls to constitute a sufficient sex education for children five years or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.
Helping Your Children Form a Relationship
Because of the nature of autism, it is usually difficult for a young child to form a satisfying relationship with a brother or sister who has the disorder. For example, your child's attempts to play with his/her brother are probably rebuffed by his ignoring her, fall flat because of his lack of play skills, or end abruptly because his tantrums are frightening. How many of us would keep trying to form a friendship with someone who turned her back when we spoke to her, or, even worse, seemed angry when we approached?
It is not surprising that young children may become discouraged by the reactions they encounter and seek their playmates elsewhere.
The good news is that young children can be taught simple skills that will enable them to engage their brother or sister in playful interactions. Research has shown that siblings can learn basic teaching strategies to engage their brother or sister with autism. These skills included things like making sure they had their brother's attention, giving simple instructions, and praising good play. One research study showed that videotapes made before and after the children learned these skills showed in a very touching manner that, after training, they played together more and seemed much happier than they had been prior to training.
Special Times
Along with ensuring that the child with autism is a fully integrated member of the family; it is important to remember that other children in a family need their times to be special. Families are often urged to find some regular, separate time for the children in their family who do not have autism. It may be one evening a week, a Saturday morning, or even a few minutes at bedtime each night. If your child with autism has a home-based program or exhibits serious management problems, you will have neither the stamina nor the energy to give your other child exactly the same amount of attention. It is not necessary that everything in childhood be exactly the same. What is important is the opportunity to feel special to your parents and to feel that there is an overall atmosphere of equity in your home.
Not Everything as a Family
There are activities that should be shared by all the family and times that should not. Along with having regularly scheduled special times for each child, it is also important to remember that there will be some events when one child in the family deserves to be the focus of everyone's attention. Children have told us that it is sometimes frustrating to have to do everything with their brother or sister with autism. In fact, there may be times when it may not be fair to insist that he or she be included. For example, if your child with autism cannot sit still for a school play, then it may be better if he or she stayed home when your other child performs.
Adult Siblings
Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on their own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.
It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.
The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment becomes important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.
It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.
Sibling Groups and Other Resources
A problem frequently reported to clinicians by siblings is a sense of isolation. An ideal means of combating this isolation is to help the sibling connect with other siblings of children with autism. Peer support groups for siblings of children with autism and related disorders are becoming more available.
The Sibling Support Project of The Arc of the United States, based in Seattle, Washington, is one example. They offer a range of information on siblings of children with disabilities, including: reading lists for children and adults, information on local sibling group meetings, information on facilitating sibling discussion groups, or online resources. Their Web site address is: www.siblingsupport.org/
Most Siblings Cope Very Well
While growing up as the sibling of someone with autism can certainly be trying, most siblings cope very well. It is important to remember that while having a sibling with autism or any other disability is a challenge to a child, it is not an insurmountable obstacle. Most children handle the challenge effectively, and many of them respond with love, grace and humor far beyond their years.
Note: The previous section was provided by Sandra Harris, Ph.D.,professor and dean at the Graduate School of Applied and Professional Psychology and Executive Director of the Douglass Developmental Disabilities Center at Rutgers University
ASD Guide --Birth through 21
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