Autism and Intellectual Disabilities
2013
Autism Spectrum Disorder
Definitions
Autism: is a developmental disability that generally begins at birth or within the first three years of life. It is the result of a neurological disorder that changes the way the brain functions — causing delays or problems in many different skills from infancy to adulthood. For example, both children and adults with autism usually exhibit difficulties in social interaction as well as in verbal and non-verbal communication. They also tend to be interested in repetitive or restricted activities. While the majority of autistic children look completely normal, they differ from other children by engaging in perplexing and distressing behaviors.
Different Types of Autism Spectrum Disorder
Why is Autism Called a Spectrum Disorder?
Autism belongs to a collection of developmental disorders known as the autism spectrum disorders (ASDs). A spectrum disorder is a group of disorders with similar features. While one person may have mild symptoms, another might have more severe ones. There are also differences in the nature of the symptoms themselves and when they are likely to first appear.
The three different types of autism spectrum disorders are:
Autistic disorder (also known as “classic” autism) This is the most common condition among the ASDs. It is marked by major delays in language, difficulties with social interactions, and unusual behaviors. Some people with autistic disorder also have impaired intellectual abilities.
Asperger syndrome. People with this syndrome display some of the milder symptoms of autistic disorder — such as social challenges and unusual behaviors. They generally do not have any delays in language or impaired intellectual abilities.
Pervasive Developmental Disorder Not Otherwise Specified (PPD-NOS, also referred to as “atypical autism”). Individuals may be diagnosed with PPD-NOS if they meet some of the criteria for either autistic disorder or Asperger syndrome but not all. They typically have milder and fewer symptoms than those with autistic disorder. Symptoms may be limited to problems with language and social interaction.
Who Does Autism Affect
Autism and other ASDs can be found in people all around the world and among all racial, ethnic, and socioeconomic groups. According to the Centers for Disease Control and Prevention (CDC), between 1 in 100 and 1 in 300 — with an average of 1 in 150 — children in the United States have an ASD. The disorder occurs four times more often in boys (usually the first-born) than in girls, with one in every 94 boys diagnosed with autism or another ASD. However, girls with the disorder generally have more severe symptoms and greater intellectual impairment.
As many as 1.5 million Americans today may be affected with autism. Of interest is the fact that more people than ever are being diagnosed with autism or another ASD. Government statistics indicate that the rate of autism is rising between 10 and 17 percent each year. According to the CDC, of the approximately four million infants born every year, 24,000 of them will ultimately be diagnosed as autistic. What accounts for this startling rise? It could be that much of this increase stems from newer (and broader) definitions of ASDs, as well as more targeted efforts at diagnosis. For example, a child who is diagnosed with autism today may have been considered merely “odd” 20 or 30 years ago. But it could also be that there has been an actual increase in the number of people with an ASD. Many experts believe that the explanation is likely to be found in a combination of these factors.
Causes of Autism
Experts are still uncertain about all the causes of autism. In all likelihood, there are multiple causes — rather than just one. It appears to be that a number of different circumstances — including environmental, biologic, and genetic factors — set the stage for autism and make a child more likely to have the disorder.
There is reason to believe that genes play a major role in the development of autism. It has been found that identical twins are more likely to both be affected than twins who are fraternal (not genetically identical). In a family with one autistic child, the chance of having another child with autism is about 5 percent — or one in 20 — much higher than in the normal population.
Sometimes, parents or other relatives of an autistic child have mild social impairments (such as repetitive behaviors and social or communication problems) that look very much like autism. Research also has found that some emotional disorders (such as manic depression) occur more often in families of a child with autism.
At least one group of researchers has found a link between an abnormal gene and autism. The gene may be just one of three to five or more genes that interact in some way to cause the condition. Scientists suspect that a faulty gene or genes might make a person more likely to develop autism when there are also other factors present, such as a chemical imbalance, viruses or chemicals, or a lack of oxygen at birth.
In a few cases, autistic behavior is caused by:
· Rubella (German measles) in the pregnant mother
· Tuberous sclerosis (a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs)
· Fragile X syndrome (the most common inherited form of intellectual disability)
· Encephalitis (brain inflammation)
· Untreated phenylketonuria (PKU) — when the body lacks an enzyme needed for normal metabolism
In the past several years, there has been interest in a theory that suggested a link between autism and the use of thimerosal, a mercury-based preservative used in the measles-mumps-rubella (MMR) vaccine. Although mercury is no longer found in childhood vaccines in the United States, some parents still have concerns about vaccinations.
However, many well-done, large-scale studies have now been performed that have failed to show a link between thimerosal and autism. A panel from the Institute of Medicine is now examining these studies. The reports include 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. Both the American Academy of Pediatrics and the Centers for Disease Control and Prevention asert that there is no link between autism and the MMR vaccine or any other vaccine.
Other potential causes of autism are environmental toxins, including pesticides and heavy metals such as mercury. Heavy metals are certainly more commonly encountered in the environment now than they were in the past. It may be that people with autism or those at higher risk for developing it are more sensitive than others to these toxins.
Diagnosis
All children with autism have problems with:
· Social Interaction – they way they relate to others
· Verbal and Nonverbal Communication
· Repetitive Behaviors or Interests
Infants with the disorder won’t cuddle; they avoid eye contact and don’t seem to want or need physical contact or affection. They may become rigid or limp when they are held, cry when picked up, and show little interest in human contact. These children don’t smile or lift their arms in anticipation of being picked up. They form no attachment to parents and do not show any normal anxiety toward strangers. They do not learn the typical games of childhood, such as peek-a-boo.
As children with autism get older they often have unusual responses to sensory experiences, such as certain sounds or the way objects look. These symptoms can range from mild to severe – and will be different in different children. For instance, a child may find it easy to learn to read, but have trouble in social situations. However, with autism, each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of autism.
Children with autism 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 gets older (between 12 and 36 months) and starts lagging behind other children of the same age.
Some parents report the changes as taking place over a short period of time. They notice that their children suddenly start to reject people, act strangely, and lose language and social skills they had before. In other cases, there is a slowing in the level of progress so that the difference between the child with autism and other children the same age becomes more and more noticeable over a longer period of time.
While a person with autism can have symptoms ranging from mild to severe, about 10% of these children have an extraordinary ability in one area, such as mathematics, memory, music, or art. Such children are known as “autistic savants.”
Although there are many concerns about labeling a young child with autism, the earlier the diagnosis of autism is made, the sooner actions to help the child can begin. Evidence over the last 15 years has shown that intensive early intervention in optimal educational settings for at least two years during the preschool years results in improved outcomes in most young children with Autism Spectrum Disorder.2
In order to diagnose autism, medical professionals look at a child’s specific behaviors. Some of these behaviors may be obvious in the first few months of a child’s life, or they may appear at any time during the early years.
In order to be diagnosed with autism the child must have had problems in at least one of these areas: communication, socialization, or restricted behavior before the age of three.
The diagnosis has two stages. The first stage is a developmental screening during “well child” check-ups. The second stage involves a thorough evaluation by a multidisciplinary team.
Diagnostic Classifications
Pervasive Development Disorders (PDD)
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, DC, 1994), and is the main diagnostic reference of mental health professionals in the U.S.
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 a PDD (like autism) or a 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.
Ideally, a multidisciplinary team of professionals should evaluate a child suspected of having autism. The team may include, but may not be limited to, a psychologist or psychiatrist, a speech pathologist and other medical professionals, including a developmental pediatrician and/or neurologist. Parents and teachers should also be included, as they have important information to share when determining a child's diagnosis.
In the end, parents should be more concerned that their child find the appropriate educational treatment based on their needs, rather than spending too much effort to find the perfect diagnostic label. Most often, programs designed specifically for children with autism will produce greater benefits, while the use of the general PDD label can prevent children from obtaining services relative to their needs.
Also within each diagnosis is the Autism Society's Panel of Professional Advisors' recommended definition of the autism spectrum and related syndromes and conditions, which is not to be used for research purposes but rather for defining the demographics of the Autism Society’s membership. The Autism Society is not attempting to represent individuals with related syndromes or conditions who do not also have autism, but rather those where autism is present in related syndromes and conditions, and where autism is the defining syndrome (e.g., autism-Asperger’s). The rationale for this position is due to the unique service needs that are imperative for individuals with autism that may not be required of the cohort disability.
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):
· 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
· 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
· 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.
Asperger’s Disorder (299.80 DSM-IV)
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 show 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.
PDD-NOS (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; and stereotyped behaviors, interests, and activities. The criteria for Autistic Disorder are not met because of late age onset; atypical and/or sub- threshold symptomotology are present. (Page 77-78)
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.
Prevention
Although the exact cause of autism is not known in most instances, some cases are linked to chemical exposure during pregnancy. Therefore, it is essential to avoid taking any drugs during pregnancy unless the doctor specifically prescribes them. That is especially true for some seizure medications such as valproic acid — a drug prescribed for the treatment of convulsions, seizures, migraine headache, and bipolar disorders. It also is essential to avoid drinking alcoholic beverages of any kind during pregnancy. Being immunized against rubella (German measles) before becoming pregnant can prevent rubella-associated autism.
Following delivery, there are certain measures that may be helpful in preventing autism. One is early diagnosis and treatment of phenylketonuria (PKU). This is a hereditary disease that is caused by the lack of a liver enzyme required to digest the enzyme phenylalanine. Similarly, early diagnosis and treatment of celiac disease may reduce the risk of a child having autism.
Researchers at the University of Washington in Seattle recently began an innovative study funded by the National Institute of Child Health and Development. The goal is to find out whether autism can be prevented in a specific group of children. Enrolled in the study are infants aged six months or younger with an older sibling diagnosed with autism. They will be part of the first study designed to prevent autism symptoms from developing in children at high risk for the disorder. While the latest research indicates that autism affects as many as one in every 150 American newborns, about one out of every 20 infants who have an older sibling with autism will develop the disorder. This study represents the first attempt to intervene and treat infants who are at risk for autism at the earliest sign of symptoms. One of the study goals is to be able to identify autism as early as possible before more obvious symptoms show up. That allows health care professionals to become involved and begin treatment while the connections in a child’s brain are still responsive enough.
Health Problems
Different children with autism have different reactions and problems at different levels. Here are some of the problems that frequently accompany autism:
Sensory problems. A great number of children with autism are highly aware of, 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 autism, the brain seems unable to balance the senses appropriately. Some children don’t seem to notice extreme cold or pain. One child with autism may fall and break an arm, yet never cry. Another may scream with alarm when lightly touched.
Mental retardation. Many children with autism have some mental dysfunction. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with autism may do well on the parts of the test that measure visual skills but earn low scores on the language portion.
Seizures. One in four children with autism will develop seizures, which often start either in early childhood or when they become teenagers. 5 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a “blackout”), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram — a recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure’s presence.
In most cases, seizures can be controlled by a number of medicines called “anticonvulsants.” 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. Fragile X syndrome is the most common inherited form of mental retardation. It was because one part of the X chromosome has a defective piece that appears pinched and fragile when viewed under a microscope. Fragile X syndrome affects about two to five percent of people with autism.
It is important for children with ASD to be 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. 6 Other members of the family who may be thinking of having a child may also wish to be checked for the syndrome.
Tuberous Sclerosis. Tuberous sclerosis is a rare genetic problem that causes benign (not cancerous) tumors to grow in the brain as well as in other important organs. One to four percent of people with autism also have tuberous sclerosis.
Treatment Options
There is no single best treatment package for all children with autism. However, most professionals agree that early treatment is important and that most people with autism respond well to highly structured, specialized programs.
Before making decisions about a child’s treatment, parents should learn as much as possible about the different options that are available. Some of the questions parents can ask about programs for their children include:
· How successful has the program been for other children with autism?
· How many children have been placed in a regular school and how have they performed?
· Do staff members have training and experience working with children and adolescents with autism?
· How are activities planned and organized?
· Are there regular daily schedules and routines?
· How much individual attention will my child receive?
· How is progress measured? Will my child’s 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?
· What Medicines are Used to Treat Autism?
Medications are often used to treat the behavioral problems, such as aggression, self-harming behavior, and severe tantrums that keep someone with autism 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 “off-label.” This means they have not been officially approved by the Food and Drug Administration (FDA) for use in children. However, the doctor prescribes the medications anyway if he or she feels they are appropriate for the child. Further research needs to be done to make sure these medicines are both effective and safe when used in the treatment of children and adolescents.
A child with autism may not respond to medications in the same way as children without autism. Therefore a child should be monitored closely while taking a medication. It is important that parents work with a doctor who has experience with children with autism. The doctor will prescribe the lowest dose possible to be effective.
Parents should ask doctors about any side effects the medication may have and keep a record of how the child responds to the medication. It will be helpful for parents to read the “patient insert” that comes with the 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.
SSRIs:
The selective serotonin reuptake inhibitors (SSRIs) are medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRIs, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age seven and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age eight and older; sertraline (Zoloft®), age six and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications have been shown to decrease the repetitive, ritualistic behavior and help improve eye contact and social contacts. The FDA is studying data to better understand how to use the SSRIs safely, effectively, and at the lowest dose possible.
Antipsychotic Medications
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 (fake drug) in treating serious behavioral problems.26 However, haloperidol, while helpful for reducing symptoms of aggression, can also have negative side effects, such as drowsiness, muscle stiffness, and abnormal movements.
Studies of the newer antipsychotics are being conducted on children with autism. The first study was on risperidone (Risperdal®).27 Results of the eight-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. Further long-term studies are needed to determine any long-term side effects. Other antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®).
Seizure Medications
Seizures are found in one in four persons with autism, especially in those who have a low IQ or who cannot speak. 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.
Medications for Inattention and Hyperactivity
Stimulant medications such as methylphenidate (Ritalin®), used for people with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity especially in 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 effectiveness of these medications in children with autism has not been proven.
Applied Behavior Analysis
Applied Behavior Analysis (ABA) is the most common treatment for people with with autism. An effective ABA treatment program will build on the child’s interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior.
Parental involvement is also believed to be a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors that need to be changed and the skills that should be taught. Recognizing that parents are the child’s earliest teachers, more programs are beginning to train parents to continue the therapy at home.
As soon as a child’s disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills.
In children younger than three years of age, appropriate interventions usually take place in the home or a child care center. These interventions target specific problems with learning, language, imitation, attention, motivation, behaving, and interacting with others. Included are behavioral methods, communication, and therapy along with social play interventions.
Children older than three years usually have school-based, individualized, special education. The child may be in a separate class with other autistic children, or may be placed in a class with children without disabilities for at least part of the day. Different schools may use different methods but all should help the children learn social skills and communication. In these programs, teachers often involve the parents, giving useful advice on how parents can help their child use the skills or behaviors learned at school when at home.
Dietary Treatment
Some diets have been reported to be helpful to some children with autism. However it’s important to keep in mind that the effectiveness and safety of these diets have not been proven.
There are people who believe that food allergies cause symptoms of autism. There is also a belief among some people that not getting enough of a certain vitamin or mineral can cuase some autistic symptoms. If parents decide to put an autistic child on a special diet, they should make sure that their child’s nutritional status is measured carefully.
A diet that some parents have found 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 vitamin supplement that some parents feel could help 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.
There has also 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. Non-scientific reports have noticed improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. However, several clinical trials conducted in the last few years have found no real improvements in symptoms between patients who received secretin and those who did not.
Prognosis
One of the first questions that parents ask after their child has been diagnosed with autism concerns the prognosis or outlook. They also want to know what factors might influence that prognosis over the child’s lifetime. There is no one answer that every doctor can hand out to every parent who is concerned about the outlook. That is because there is no one kind of autism that covers every diagnosis. Each child with autism is unique. The causes of the disorder vary from child to child, and therefore the prognosis will vary as well. Another consideration is the presence of any other conditions that the child may have. For example, if the child has epilepsy or some other medical problem that can be identified and treated effectively, that might improve the prognosis.
Still, there is no known cure for autism. In some cases, children do seem to recover — so much so that the diagnosis of ASD is withdrawn. Sometimes this happens after intensive treatment but not always. In some instances, children aged five or older who have not previously spoken do acquire speech. For most children, symptoms frequently become milder as the child gets older. However, the core problems — such as difficulties with social interactions — generally remain. According to some experts, the following factors suggest a better prognosis:
· Having an I.Q. above 50
· Ability to speak before age six
· Having a useful skill
Although autism continues to be a difficult disorder for children and their families, today’s prognosis is a far improvement over what it was 30 years ago. At that time, it was not unusual for people with autism to be placed in institutions. These days, with the proper diagnosis and early initiation of treatment, many of the symptoms of autism can be reduced — although the majority of people will never be entirely free of symptoms. Just how well the person functions depends on the degree of the disorder as well as the timing and level of treatment.
Some adults with autism, especially those who are high-functioning or who have Asperger syndrome, are able to work successfully in mainstream jobs. However, communication and social problems often cause difficulties in many areas of life. These people will continue to need encouragement and moral support in their struggle for an independent life.
Many others with autism are able to work in special environments especially if they are supervised by managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with autism continue to learn and to develop throughout their lives.
The public schools’ responsibility for providing services ends when the person with autism reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals.
Prognosis Continued…
Autism is a severe developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children look like other kids and are perfectly normal in appearance, but do spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Less severe cases on the spectrum may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger's Syndrome, these children usually typically have normal speech and might even be intellectually gifted, but they have one or more many "autistic" social and behavioral problems.
People used to think autism was irreversible. The good news is that there are are now a wide range variety of treatments that can be very helpful.
A good starting point for choosing one is to look at the parent ratings of interventions, which presents the responses of more than 25,000 parents, showing the effectiveness.
How Common is it?
For many years autism was rare - occurring in just five children out of per 10,000 live births. However, since the early 1990's, the rate of autism has increased dramatically around the world, with figures as high as 60 per 10,000. Boys outnumber girls four to one. The US Federal Centers for Disease Control estimates that as many as 1 in 88 children will be diagnosed with an ASD.
What is the Longer-Term Outlook?
Age at intervention has a direct impact on outcome--typically, the earlier a child is treated, the better the prognosis will be. In recent years there has been a marked increase in the percentage of children who can attend school in a typical classroom and go on to live semi-independently in community settings. However, but the majority of autistic persons remain impaired to some degree in their ability to communicate and socialize.
Facts and Statistics
· Autism costs a family $60,000 a year on average
· Boys are nearly five times more likely than girls to have autism
· There is no medical detection or cure for autism
· 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.1
· Prevalence is estimated at 1 in 88 births.2
· 1 to 1.5 million Americans live with an autism spectrum disorder.3
· Fastest-growing developmental disability; 1,148% growth rate.4
· 10 - 17 % annual growth.5
· $60 billion annual cost.6
· 60% of costs are in adult services.7
· Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.8
· In 10 years, the annual cost will be $200-400 billion.9
· 1 percent of the adult population of the United Kingdom have an autism spectrum disorder.10
· The cost of autism over the lifespan is 3.2 million dollars per person.11
· Only 56% of students with autism finish high school.12
· The average per-pupil expenditure for educating a child with autism was estimated by SEEP to be over $18,000 in the 1999-2000 school year. This estimate was nearly three times the expenditure for a typical regular education student who did not receive special education services.13
· The unemployment rate for people with disabilities was at 14%, compared with 9% for people without a disability. Additionally, during the same period, only 21% of all adults with disabilities participated in the labor force as compared with 69% of the non-disabled population.14
1. Pediatrics, October 5, 2009, based on a National Children’s Health Survey done with 78,000 parents in 2007.
2. "Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008." Department of Health and Human Services, Centers for Disease Control and Prevention.Morbitity and Mortality Weekly Report, 30 March 2012.
3. Based on the autism prevalence rate of 1 in 110 (Centers for Disease Control and Prevention, 2009) and 2000 U.S. Census figure of 280 million Americans.
4. “Autistic Spectrum Disorders: Changes in the California Caseload, An Update June 1987 June 20007.” Cavagnaro, Andre T., California Health and Human Services Agency. State of California 2003 survey of developmental disabilities.
5. Autism Society estimate based on 2003 US state educational data.
6. Autism Society estimates based on UK study by Jarbrink K, Knapp M, 2001, London School of Economics: "The economic impact on autism in Britain,"Autism, 5 (1): 7-22.
7. Autism Society estimate.
8. Autism Society estimate, using Government Accounting Office Report on Autism 2007.
9. Autism Society estimate.
10. Autism Spectrum Disorders in adults living in households throughout England," Report from the Adult Psychiatric Morbidity Survey 2007, a survey carried out for the United Kingdom NHS Information Centre for health and social care.
11. Arch Pediatric Adolesc Med. 2007;161:343-349.
12. (Wagner. M., et al. An Overview of Findings from Wave 2 of the National Transition Study, SRI International, Menlo Park, CA)
13. (GAO-05-220, Special Education Report to Congress, 2005)
14. Current Population Survey. (December 2010). Bureau of Labor Statistics, Washington, DC.
Red Flags
· No big smiles or other warm, joyful expressions by six months or thereafter
· No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
· No babbling by 12 months
· No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
· No words by 16 months
· No meaningful, two-word phrases (not including imitating or repeating) by 24 months
· Any loss of speech, babbling or social skills at any age
Personal Stories
Zidlow and Eli’s StoryApril 7, 2011
By Zidlow
I had just asked my son Elijah, who is fifteen, to shut down his computer and the TV and go to sleep. The cartoons he was watching had a bunch of different voices and sound-effects that were driving us crazy, so he said, “Okay, Dad,” and then shut them off in from of me and jumped into bed.
I closed the door and headed to my bedroom, when I heard the same racket coming from his room again. So I got really annoyed and stormed back to his room, opened his door and said, “I thought I told you to shut those stupid cartoons off!” But he was still in bed, and his computer and TV were still off. So I asked him what was going on.
“I just heard those crazy sounds again,” I told him. He sheepishly said, “Okay, okay, you caught me. It was me.”
“What do you mean it was you?”
So he started to do four or five different voices, asking questions and answering them in full conversations, back and forth, body and facial expressions in full force. I stood in his doorway, smiling, and in awe, yet again.
I will share with you a view of a very gifted boy, who is entertaining, fascinating, hysterically funny, and sweet – or an unbelievable pain in the butt, depending on the binoculars you yourself construct.
A diagnosis of autism can be a deathblow to a parent, who might be left feeling like there is no hope whatsoever. I know; I’ve felt it. But not unlike Jimmy Stewart in It’s a Wonderful Life, who is shown that jumping into an icy water death is not the right, or only, way to deal with such overwhelming grief, being handed a diagnosis of autism follows the same logic. In the film, Clarence says to Stewart’s character, “Look how things would have turned out without you. “It is only then that he realizes that this truly is “a wonderful life.”
It is our hope that you are suffering have a “Clarence moment” that allows you to embrace your loved one’s autism day by day, and like a phoenix, rise up from what you may have felt were ashes. Through sharing our experiences and insights, and most importantly through the best medicine of all—laughter—we hope you find hope from our stories.
Valerie’s Story
By Valerie Paradiz
I found out about my autism through the birth of my son, which might sound unusual. He was born 19 years ago and was diagnosed shortly thereafter. With time, I began to feel that I too was diagnosed with autism. Many of my friends diagnosed with Asperger’s Syndrome basically did an intervention and said, “Val, you’re busted,” It wasn’t that I didn’t want the diagnosis; over time it was a huge relief. To know how to behave and be in different social situations is one thing, but you have to know how to feel comfortable in them. What if making eye contact with someone makes it impossible for you to hear their voice? There are ways you can.
Spencer
April 5, 2012
By Spencer’s Mom
I am a mom of a four year old boy with autism named Spencer! He loves Toy Story and time with his friends in the Montessori Autism Program he attends in our hometown of Folsom, CA.
Spencer was diagnosed with Autism at the age of three, but presented with symptoms as early as eighteen months of age. At age three he was nonverbal. He was often frustrated and cried a great deal of the time. With a heavy heart I contacted our pediatrician to obtain a referral to Alta regional, California’s social program which helps children with developmental disabilities. Through Alta, Spencer was evaluated.
After the evaluation, my suspensions that Spencer had autism were confirmed. I never felt so lost or alone. I feared that I may never have a close relationship with my son. I didn’t know how to reach him and I felt so helpless.
It’s been over a year now and with help from several special needs programs; I am happy to report Spencer is talking, making friends, and we have a wonderful relationship! Spencer is doing so well! We still struggle. Parenting a child with Autism is no easy task, but if feels twice as rewarding! I’m so proud of all Spencer’s hard work and enjoy watching him grow. I have hope now and love not only for my son but for all kids on the spectrum.
Sherri
March 31, 2011
By Sherri
I am the mother of three beautiful children. My twin daughters came into my life through adoption. My son came into my life through birth. My children are precious and have brought me more joy than I could ever imagine. My son is 18 years old. He was diagnosed with early infantile autism. Inattentive and impulsive ADHD, dysgraphia, and anxiety disorder. He is honest, fair, and intelligent. He also will probably never leave home because he didn’t receive the early intervention that he needed to become successful.
Before my children were born I was working for a Fortune 500 company making a very good wage. I am now working for a grocery store making $7.50 per hour. I am unable to make more than that for several reasons. They all have to do with my son’s disability.
I co-founded the Lee’s Summit Autism Support Group because I was frustrated and didn’t know where to go for help. I met another mother on a website for parents of children with disabilities. We quickly became support for each other and spoke on the telephone frequently. We started our group because we knew that there had to be other families out there that were suffering the same way and needed the same support that we were looking for. I will not begin to describe the trials and tribulations that we have encountered trying to get out support group going, but I can proudly tell you that through persistence and shear will we have a wonderful group of parents now. This leads to my issue with employment.
I cannot give up my support group, and it takes a huge amount of my time. I am willing to accept that challenge, and will not give it up. I do a lot of the work when my children are in bed.
My son was forced to drop out of high school and because there is such a lack of knowledge about autism, he misses 30 days of school each year. This is because his IEP isn’t being implemented and his teacher’s don’t understand that children with autism need to chew. Therefore, he is reprimanded for chewing, or he shuts down and his teacher writes him up. This all leads to him becoming physically ill and having to be picked up from school. Then there are the appointments with doctors to try to find the right medication to address some of his issues. This is no small task and requires diligence and time. I can’t work for a company that expects me to be at work every day. I need to be available during school hours. I can only work weekends, evenings, and nights. This has led to me making half of what I made over 20 years ago and missing out on a lot of family time with husband and children. I am fortunate. My husband makes a good living and I can afford to make this sacrifice. For years I was able to stay home, but with the present economy, I have been forced back to work. Some families don’t have this choice. Some families are made up of single mothers who are in fear of losing their jobs when they are called to school to pick up their children.
I am a mother who felt she knew everything that she needed to know to raise children. The day that my son was born, that all changed. I have become an advocate and a lobbyist. My son’s life depends on it.
Rhayven’s Story
September 16, 2011
By Rhayven
My name is Rhayven. I’m 20, and autistic. Granted, just speaking with me over the Internet wouldn’t really be given away.
It’s not a closely guarded secret or anything. Why should it be? It’s just that I can present myself easier over the web, and thus it’s not as noticeable.
In person, or on the phone? Then, not so much.
A lot of people seem to think of it as a horrible thing. With the way it’s portrayed in the media, I guess I can understand why, but it doesn’t have to be that way.
I’m not by any means normal, but then again, what’s normal in the first place? I don’t see autism as a curse. I don’t see myself as broken. And I do not want to cure. In some ways it’s a gift, and in others, it’s a real pain. I suppose it’s all depending on whose viewing?
Some Autistics are great at math. Some have photographic memories, and can recall events in such detail, its baffling. Me? I’m a Poetess. It’s both my passion, and an outlet. It’s a gift. And it’s something I love.
My thinking, and the pattern in which I see, or at least recognize, some things is a bit ‘different.’ But again, I don’t much care. I am just a bit different and don’t want to give it all up just because society doesn’t like it.
To other young adults or teens with autism – it’s not a death sentence. It’s not the end of the world, and it’s by no means icky, or bad. Yeah, we may function differently. But it can be rewarding.
In the News
VizZle and Autism Society Partner to Provide Educational Resources for Students with Autism
April 3, 2013
By Autism Society
SHAKER HEIGHTS, OH (April 1, 2013) — Monarch Teaching Technologies (MTT), the makers of VizZle®, web-based educational software for visual learners with autism, today announced plans to give one-year of free VizZle to every new (or renewing) Champion Member of the national Autism Society during April, National Autism Awareness Month.
“We wanted to do something truly impactful for Autism Awareness Month,” said Terry Murphy, CEO of MTT. “We are so pleased to be able to offer an incentive to help people become aware of the benefits of membership in the Autism Society, to enhance those benefits, and to recognize the important work the Autism Society does to help improve the lives of all affected by autism.”
Throughout the month of April, the first 1,000 new or renewing Champion ($75) members of Autism Society will be given one year’s access to VizZle, which will give them access to a vast library of visual lessons and supports that can help improve daily living with autism. The promotion is limited to non-professional users, including parents, families and individuals with autism and has a retail value of $300.
“The Autism Society is thrilled to join VizZle in this National Autism Awareness Month for an initiative that will empower children and their parents to reach their educational goals,” said Scott Badesch, Autism Society president and CEO. “The Autism Society believes that a strong educational foundation is essential because it sets children on a path to independence and meaningful employment in adulthood. Monarch Teaching Technologies truly understands the importance of helping children with special needs succeed.”
About VIzZle®
VizZle, produced by Monarch Teaching Technologies, is a web-based visual learning resource that empowers educators and parents to deliver fun, interactive visual activities customized to the needs of children with autism. Teachers, students and parents collectively spend over 15,000 hrs/month on VizZle using any of the almost 8000 lessons from the moderated shared library, or creating lessons from in-program templates and over 14,000 images, audio and video clips. Outcomes can be tracked by IEP goals or Common Core Standards. http://www.monarchteachtech.com/vizzle
About the Autism Society
Founded in 1965, the Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. The Autism Society does this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education and research. The Autism Society maintains a strong nationwide network of chapters to provide support and grassroots advocacy at local, state and federal levels. www.autism-society.org.
The Changing Definition of Autism: Critical Issues Ahead
January 20, 2012
Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.
Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.
Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms. As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.
Now let me provide some background.
The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.
An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.
Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.
Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable. We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.
As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.
It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.
Top Ten Books on Autism
1.Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
2.1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders
by Veronica Zysk
3. Understanding Autism For Dummies (For Dummies (Health & Fitness)
by Stephen Shore, Linda G. Rastelli, and Temple Grandin
4. Preparing for Life: The Complete Guide for Transitioning to Adulthood for Those with Autism and Asperger’s Syndrome
by Jed Baker
5. My Friend with Autism: A Coloring Book for Peers and Siblings
by Beverly Bishop
6. The Autism Acceptance Book: Being a Friend to Someone With Autism
by Ellen Sabin
7. Ten Things Your Student with Autism Wishes You Knew
by Ellen Notbohm
8. Thinking in Pictures, Expanded Edition: My Life with Autism
by Temple Grandin
9. A Is for Autism F Is for Friend: A Kid’s Book for Making Friends with a Child Who Has Autism
by Joanna L. Keating-Velasco
10. Everybody Is Different:A Book for Young People Who Have Brothers or Sisters With Autism
by Fiona Bleac
JULY 10TH, 2008
1. You could play with him in a swimming pool. Make a splashing game or a kick game. Get some simple pool toys or beach toys like beach ball, floating rings, etc. Sing a song so he can swim with the beat and feel relaxed. Remember to keep a good eye on the child while in a pool.
2. In a class, you could print out some pictures of eating, sports, going to the bathroom, sleep and everything that may happen in his daily life. Let him make a schedule for himself, he should like this activity, because children with autism take constant schedules very seriously. And if the schedule they followed every day is broken, it will ruin their day badly.
3. Big Tupperware items filled with rice or beans will be fun, you can put little toys in them and have the autistic child put his hand into the rice or beans to find them. The game could make a mess, but they would love it.
4. Sensory play is widely suggested, too. You could take the child to a children’s museum if there’s one nearby. Commonly, there will be something that could interests the child.
5. Structured activities with a clear start, middle and end are always good for children with autism because they like rules, organization and structure. Gymnastics is a common game that autistic children do well at since there is less reliance on language (children with autism often have little communication skills) but a lot of motor movement and imitation.
6. If music can calm the child down, you can introduce different instruments to him, gently in the background. You can let him beat a drum and learn different rhythms.
7. There are some therapeutic horse riding groups that you can participate in, children can learn to feed and take care of horses in their lessons.
8. Every child with autism is different; you should find out his likes and dislikes and continue to do the things he seems to enjoy.
DECEMBER 23RD, 2008
Here are some good games for kids with autism, including free site games, board games, video games, etc. As you know, children who suffer from autism have specific interests, at least one. Find out what it is and start from there.
1. The Wii. This game is all about movement. Autistic children make the same movements as his person, it’s helpful for controlling his character. Plus, it’s simple, for there are very few buttons. Many kids with autism love it. It’s an fantastic invention.
2. Free site games:
This website adapts to children from 3 to 6 years old. It can read stories and teach sounds and letters.
There are some color bingo and sound matching games on this site page.
3. Computer games, such as mysteries, puzzle games, or strategy games (such as Age of Empires or Age of Mythology). They are fun and not as graphic as some video games.
4. Board games. Candy land is a good one. It helps children to learn counting and turn-taking. The game “Sorry” can help kids with rules and number identification. Scrabble and simple Charades can help with social skills, too.
5. Games for a group of students: “Around the world”. One student stands in back of another (who is seated at his desk). You say (let’s say you are doing verbal opposites), “BIG”, and the two children who are “it” have to come up with the verbal opposite. First one who says it moves on to the next seat. Loser has to take the winner’s seat. Reward anyone who makes it all the way around, or after however many correct answers works for your group.
6. Go fish. This game works on language, memory and attention. And it’s fun to play.
7. Try the old fashion Tetris. Buy Nintendo DS at an electronic store and ask the clerk for games that wouldn’t trigger a tantrum, games that are calmer.
8. Video game. Vice City and GUN are rated M, which is the second highest video game rating. Basically, it’s not a good idea for autistic kids to play video games with too much violence.
Family IssuesA child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their marriage, other children, work, finances, and personal relationships and responsibilities. Parents now have to shift much of their resources of time and money towards providing treatment and interventions for their child, to the exclusion of other priorities. The needs of a child with ASD complicates familial relationships, especially with siblings. However, parents can help their family by informing their other children about autism and the complications it introduces, understanding the challenges siblings face and helping them cope, and involving members of the extended family to create a network of help and understanding (Understanding Autism for Dummies, 2006). Finding time for prayer and attending a place of worship also helps many families handle the challenges of autism and provides a safe, inclusive environment for both the child and family
Stress
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 on the autism spectrum, unique stressors are added.
An individual with autism may not express their basic wants or needs in a manner that we would expect. Therefore, parents are left playing a guessing game. Is the child crying because he/she is thirsty, hungry, or sick? When parents 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. If a child has deficits in social skills, such as the lack of appropriate play, stress may be increased 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 issues and behaviors are physically exhausting for families and emotionally draining. For families of children on the autism spectrum this can be a particular 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 his/her 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.
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 his/her 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 on the autism spectrum may experience a sense of isolation from their friends, relatives and community.
Siblings
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.
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 caregiving
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 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 misled 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 5 or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.
Click here, for practical, age-appropriate information on teaching children and teens to make friends with their classmates on the autism spectrum.
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 include things like making sure they have 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 the entire 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 his/her 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.
Autism New Jersey, Inc. matches’ siblings with pen pals around the country as well as internationally.
Several online resources are also available. For example, a chat room for siblings of children with disabilities, called "SibChat," meets periodically.
A final resource to consider for siblings, particularly for those who are experiencing difficulty in adapting to the disability, would be individual counseling.
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.
Religion and Autism
Below are two articles originally published in the Autism Society's magazine, the Autism Advocate, on the topic of autism and religion. The articles provided here relate specifically to the Christian and Jewish faiths, but many of the tips can and should be applied to all religions.
· The Christian Perspective
· The Jewish Perspective
"The Christian Perspective"
By Terri Connolly
The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times.
Christ's example of "agape," or unconditional love, is paramount to our understanding of the role of acceptance in the church. Too many parents and siblings, as well as the individual with autism, are asked to leave or feel so uncomfortable that they lose this most precious part of their lives, and at a time when they are most in need.
The behaviors associated with autism often present challenges for the family church experience, yet I often find myself wondering: "If not church, then where can an individual be accepted exactly as they are with unlimited love and inclusion?" Families of faith need to find a church where all of its members can be nurtured. By integrating the individual with autism as a regular member of the church, with resource help and community-wide education, the church becomes accessible to the whole family, and the family, in turn, is strengthened through shared faith experiences.
Tips to Supporting Inclusion
Initiate contact. lnitially, parents may want to contact the pastor or Sunday School teacher to introduce themselves and prepare them to provide a successful experience for everyone. Include information about educational goals and discuss communication methods.
Discuss your expectations. When attending a worship service, it would be wise to discuss with the worship leader what he/she might expect. In return, the worship leader should offer supports to the family, such as someone to stay with siblings should the parents need to leave during the worship service or to accompany the individual with autism to another comfortable place should he or she become distressed.
Be prepared. Most experienced parents know that all children and many adults become fidgety during church. Being prepared with a quiet object of concentration, such as a rubber band, pictures, books, or an object of visual focus, can be very helpful, particularly if it has religious significance to enhance the worship experience in a different way. Items that provide comfort and security at home might be made available at church.
Get acclimated. Since it is thought that many individuals with autism experience things holistically, attention should be given to the sights, sounds, and even smells within the sanctuary or classroom. A visit to the sanctuary and classroom in a church when they are empty might give the individual an opportunity to explore in ways that might be inappropriate when crowded. With special permission, one might also explore the organ or piano to prepare the individual for the sudden and sometimes loud sounds during worship.
Teach by example. The worship leader may comfortably acknowledge any distracting behavior with a simple, sincere acknowledgment. "So glad you could join our worship today, Tom," after which the worship leader continues as if Tom's participation is perfectly natural. The worship leader's acceptance is very important. Sensitivity and joint strategy planning are critical.
Develop peer partners. In order to help relationships and friendships blossom, peer partners who rotate responsibility for assistance can help to create a wide base of support for the individual while fostering a truer atmosphere of inclusion.
Help the individual feel welcome. Several adults or children should assume quiet lay leadership roles by greeting the individual with eye contact, a "Hi, Bryan," a high-five, a popular stylized handshake, or a pat on the shoulder. It is often this simple, yet critical initiation that communicates the gospel message. A kind of "underground" effort of greeting creates a wonderful atmosphere of acceptance.
Stand firm. Finally, the family should stand firm in their belief that we all have a place in the worship experience. When one member is missing, the experience of all is diminished.
Younger Children and Sunday School
In being part of the community of faith, all individuals need the opportunity for active participation. Doing what others do promotes a feeling of inclusion. For children in Sunday School, the following ideas have been successful:
Use the Bible. Encourage the child to hold the Bible open to the appropriate page. Use a bookmark or guide the child's hand to follow as others read aloud.
Ensure participation. Pass a ball or talking stick while sharing or learning parts of a memory verse. The child with autism is the assured a chance to participate with the help of another to communicate the message. A notebook from home could tell about experiences and add prayer requests, if necessary.
Rotate buddies. Remember to encourage multiple friendships and acquaintances by rotating peer escorts and buddies.
Use visual cues. Use extra visual cues, such as pictures, during a story at any age level. Quietly reword a story as needed so that it is understandable to the individual.
Encourage imitation. Encourage, but do not force, imitation of body postures, such as bowing one's head and clasping hands for prayer, standing to sing, and looking toward the person who is speaking. This will certainly vary with the individual, but it helps to create an attitude of prayer and participation.
Older Youth and Participation
Older youth and adults with autism can participate partially or fully in different ways, just as most youth and adults without autism. Encouraging participation and service to others is important for the individual as well as the community.
The following suggestions are based on the approach that was used with a particular individual with autism:
· Greet people with a smile, and hand out service bulletins.
· Gather up the bulletins and papers left in the pews after the service, restoring order to the sanctuary.
· Carry the offering plates to the safe following the service. Deliver crackers and juice to the little ones in the preschool classes.
· Collect and deliver Sunday School attendance records to the attendance clerk.
· Assist in the delivery of cards or food to homebound individuals.
· Participate with deacons in the packaging and delivery of food and toys to the needy during the holidays.
Christmas
Christians celebrate the birth of Christ with much pageantry, tradition, and cultural ritual. Augmenting the typical worship service adds to the richness of meaning, while making the celebration more personal.
· Talk about the spiritual aspects of the Christmas time in normal daily conversations. Describe the upcoming ritual and pageantry through simpler methods, such as through pictures, role-playing, and storytelling.
· Bring a special item that might represent some element of the holiday celebration that can be held during worship. It may be a piece of textured "swaddling cloth," a shiny star, nativity figures, or cinnamon sticks. One symbolic item brought forth at the right moment may become part of the holistic experience of celebration.
· During the service, follow along in the bulletin and prepare the individual for the moment any loud, dramatic music is to occur. Covering the individual's ears and gradually uncovering them may work. However, be prepared if does not; what is musical to one person may be cacophonous to another.
Giving Gifts - A Unique Approach
One church that I know has a wonderful celebration in early December where they gather to recognize the natural talents and spiritual gifts of its members -a bit of a twist on the gift-giving theme. From young to old, with talents that range from the artistic and musical to gifts of compassion and hospitality, many are recognized and encouraged. It would be a wonderful tradition for any church to duplicate.
As for the individual with autism, I know of one individual who has amazing attention to visual detail, which could be displayed with examples of his or her favorite pictures. I know of another person who has the warmest smile I have ever seen. This friend also demonstrates amazing altruism, and would make a wonderful greeter.
Community Responsibility
Introduce the concept that the responsibility for every member of the congregation is a corporate, shared responsibility. This is a true fellowship. The participation and inclusion of individuals with autism should not rest on the shoulders of one or even a few volunteers who are "trained" or ''assigned." Children and youth will need guidance to facilitate inclusion, as will many adults. Gradually, the focus of special assistance should fade as everyone accepts shared responsibility.
It takes effort and intention to help a person with autism discover his or her gifts. But in doing this exercise, we all would be challenged to focus on what the individual can do. By providing for inclusion of one individual, we meet the needs of each individual in the family by allowing their full participation in a faith community.
Terry Connolly is the mother of five children and an active member of the Highland Baptist Church in Louisville, KY. She has a Master's degree in Special Education and provides consultation and training in early childhood development.
"The Jewish Perspective"
By Joshua Weinstein
Before Passover, my other children enthusiastically presented me with the projects they had made in Yeshiva (Hebrew school). My heart sank when my son who has autism and attends a public school brought me his book bag, which I opened only to find the Easter egg he had painted in class. My son knows how to say the "Shema" prayer, but can also tell me stories about Santa and the Reindeer.
We have accepted that God has chosen for us to have a child with autism. When he became of school age and we sought to provide him with a Jewish education, we were extremely disheartened to learn that not a single school program existed that would serve the needs of Jewish children with autism. Doesn't each and every Jewish child deserve the opportunity to receive a Jewish education to the best of their individual abilities?
-Excerpt of a letter from a parent to the Shema Kolainu School
This was my first introduction to the pain and feelings of a Jewish parent on her inability to send her child to a school of her choice that would help keep the family identity. There were no Jewish schools using ABA (Applied Behavior Analysis, an intensive behavioral intervention technique) for children with autism anywhere in the United States.
Since I founded Shema Kolainu, the first Jewish school using ABA on a one-to-one basis for children with autism in the U.S. in 1988, we have been flooded with phone calls from heartsick parents on a daily basis. Although not a religious school, Shema Kolainu fulfills the need to learn about Jewish culture and heritage as well as focus on the bilingual needs of its students. Our programs and services are designed to accommodate a broad range of functional levels and varying degrees of disabilities. Students are taught about Jewish holidays through music and arts and crafts, to give tzedakah (charity) at circle time, to say and read the Aleph Beth (alphabet), and are taken to a matzo bakery to bake matzos before Passover, to name a few.
The official name of our school is Shema Kolainu, which means Hear Our Voices. Hearing the voice of the child and the family means assisting the child to reach his or her potential, both in an academic setting as well as a community setting. It is not enough for a child to achieve in the classroom and then not have the skills needed to be successfully integrated into their community and partake of his or her own culture and heritage. This is extremely important and beneficial for the individual with autism, the family, and the community at large.
Rituals and Individuals with Autism
Children who have autism spectrum disorders benefit greatly from consistency. The Jewish religion has practices such as daily prayer and weekly ceremonies in a synagogue. One mother told me how her 16-year-old daughter who has autism attends synagogue each week, uses a prayer book, and even answers "AMEN" along with the congregation. A local synagogue gives a young person with autism the honor of collecting the prayer books after services.
Below are other examples of activities in which children with autism may be encouraged to participate:
· opening and closing the ark before the Torah (Jewish scripture) is read
· helping the reader turn page numbers
· assisting in preparing and setting up the Kiddush (Sabbath reception)
· helping to put away the prayer shawls after services
Familiarity with these practices from an early age promotes greater inclusion into the community as adults and helps some children to better understand their cultural and religious practices.
Special Ceremonies
Ceremonies can be a wonderful and meaningful experience for both the child and his or her family. When a Jewish child turns 12 or 13 years old, he or she undergoes a ceremony called a Bar Mitzvah (boys) or Bat Mitzvah (girls), which symbolizes entrance into the realm of adulthood and the observance of mitzvahs (positive deeds).
A child with autism, depending on his or her functioning level, can participate in a variety of ways:
· some may be called to read from the Torah
· others may recite a passage from a prayer book
· still others may recite a Bar Mitzvah speech
One family chose to make a Bar Mitzvah for their son with autism. They invited family and people who had made a difference in their son's life over the years. The mother says emphatically that this was the best decision she has ever made. Her son enjoyed the ceremony and reception, and the family felt comforted to know that they were surrounded by people who love and support them. Their son's favorite activity is to look through his Bar Mitzvah album and watch himself on the video.
Holidays
The holidays can be a stressful time for a person with autism because it is a breach in their daily routine. If a child is educated about the holidays before they arrive, he or she will be more comfortable and feel at ease. This, in turn, will alleviate much stress from the family.
It is important, therefore, to remember to apply the techniques used to involve the individual with autism in daily activities to these special activities. The individual with autism may be asked to participate at some level in many rituals or ceremonies, such as:
· the weekly Sabbath festivities in the home
· the Sabbath festivities at the synagogue
· the Passover Seder
· Chanukah candle lighting
All of these activities create a bonding between the parent and child and the community at large.
Judaism and Special Children
Judaism has strong traditions regarding special children. It is said that Chazan Ish, a great Rabbi, always stood up when a special child entered the room because he said that their souls are lofty and pure.
Even so, a local synagogue may need some guidance and sensitization to the needs of its special congregants. If there are issues that arise concerning a person with autism or other special needs, it is a good idea to set up a private appointment with the rabbi.
Issues that can arise may include a child's disruptiveness during services, inclusion into youth group activities, and fostering greater understanding and sensitivities from members of the congregation toward the population with autism.
Inclusion of people with autism and other disabilities into our community and places of worship is beneficial to us all. We can all learn a tremendous amount from them about patience, perseverance, dedication and sincerity.
When we introduce an individual with autism into a religious community and help them relate to the holidays, customs and celebrations become more meaningful to everyone. This, in turn, helps those in the community understand the child better as he or she performs certain rituals together. This brings parents and siblings closer to their child with autism, and benefits both the family members and everyone close to them.
It may sound cliché, but the following statement is both apt and true: "Families that pray together stay together."
Autism through the Lifespan
In our mainstream culture, autism is often thought of as a childhood condition. This is because until very recently, public attention has been focused primarily on children and the importance of early detection and intervention. However, autism is a lifelong condition, and the available, necessary supports and treatments change as people on the spectrum move through major life phases. With the rising diagnostic rate of 1 in 88, and estimates that this trend will continue, it is important that we anticipate the pressing need for supports and programs for people on the spectrum across the lifespan.
Like nondisabled individuals, people with autism move through significant life changes. Their quality of life depends not only upon the foundation that is provided in childhood, but also on ongoing supports that are specific to the educational, medical, social, recreational, family and employment needs of the individual.
The Autism Society supports individuals with autism and their families through three critical stages of life.
Early Detection & Intervention
The Autism Society promotes early identification and access to effective treatments before age 3. Early diagnosis of autism reduces lifetime care costs by two-thirds.
Building a Strong Foundation from Childhood Through Adolescence
The Autism Society helps parents and caregivers build education and treatment programs, so that all children and adolescents can reach their fullest potential.
A Life of Happiness and Dignity
The Autism Society works to ensure that every adult with autism has access to services and supports that maximize independence and secure the highest quality of life.
Infants and Toddlers
The first three years of life are crucial to a child’s development. Children make several visits to their pediatrician during this period for well-baby/child check-ups, vaccinations and general developmental screenings. The American Academy of Pediatrics now recommends that the 18- and 24-month well check-ups also include developmental screening for autism spectrum disorders (ASDs) for all children. If symptoms warrant and/or the child has a sibling with ASD, further screenings should be conducted. The first signs of autism can sometimes be detected as early as 18 months.
Early identification of an ASD is critical as it means early intervention services can begin, which can make a huge impact on a child’s behavior and functioning, and future well-being. Without early intervention, the symptoms of autism can worsen, resulting in more costly treatment over the course of a lifetime. The Autism Society estimates that the lifetime cost of caring for an individual with autism ranges from $3.5-$5 million, and that annual costs for autism in the U.S. total almost $90 billion. These costs can be reduced by two-thirds with early diagnosis and intervention.
Unfortunately, many state and federal services aimed at early intervention are being cut. These drastic cuts mean that the wait for services will exceed the ideal window of opportunity for the best treatment outcomes.
Currently, in the United States, the average age of diagnosis is between 3-6 years of age, but some children are being diagnosed as young as 2. It is important for parents to discuss the diagnosis with their medical practitioner(s) and devise a treatment plan that best addresses the needs of both the child and family. The Autism Society encourages applied research to determine those interventions that are most effective for those with autism. We also encourage the sharing of research advances across states so that all people with autism can benefit.
School-Age
Just as there are various treatment approaches, there are multiple educational programs that provide stimulating learning environments for school-aged children with autism. The Individuals with Disabilities Education Improvement Act (IDEIA) is a federal mandate that guarantees students with disabilities a free, appropriate public education. Additionally, the education plan for a student with disabilities can include "related services" that may encompass many of the treatments discussed in the treatments section.
Adulthood
The transition for individuals on the autism spectrum, from federally mandated services through the school system to adult services can be a challenge. While entitlement to public education ends at age 21, the Individuals with Disabilities Education Improvement Act (IDEIA) requires that transition planning begin at age 16 and become a formal part of the student's Individualized Education Plan (IEP). This transition planning should include the student, parents and members of the IEP team who work together to help the individual make decisions about his/her next steps. An Individualized Transition Plan (ITP) should be developed that outlines transition services that may include education or vocational training, employment, living arrangements and community participation, to name a few.
The first step in transition planning should be to take a look at the individual's interests, abilities and needs. For example, what type of educational needs must be met? College, vocational training, adult education? Where can the young adult find employment and training services? What types of living arrangements are best? Does the individual wish to pursue social opportunities?
Self-Advocacy
Adapted from “The Secrets of Self-Advocacy: How to Make Sure You Take Care of You” by Stephen M. Shore, Autism Advocate, 2006, Vol. 44, No. 4
Self-advocacy involves knowing when and how to approach others to negotiate desired goals, and to build better mutual understanding and trust, fulfillment and productivity. Successful self-advocacy often involves an amount of disclosure about oneself to reach the goal of better mutual understanding. In other words, it is sometimes needed in order to explain why an accommodation is necessary or helpful.
Ideally, it starts by setting the preconditions when the child is young. An important precondition for successful self-advocacy and disclosure is self-awareness. People with ASD need to understand how autism affects their interactions with others and the environment. Also, they need to be familiar with their strengths and challenges. A parent or caretaker can do this with a child from a very early age. In fact, the earlier a child has an explanation about his differences, the better off he will be.
Parents should let their child know of their strengths in any way they can. In addition to developing greater self-understanding, talents can be fostered for eventual courses of study and successful employment.
Teaching Self-Advocacy Skills
Just as teaching social skills and reading nonverbal communication is necessary for those on the autism spectrum, self-advocacy and disclosure requires direct instruction to develop skills.
Areas of instruction can include a variety of topics and skill areas, including:
• Use a child with autism’s IEP as a tool to teach her about self-advocacy and disclosure
• Teach children or adults about the sensory systems and how to make requests for environmental accommodations
• Support a person on the spectrum in learning how and when to self-disclose
• Introduce a person with ASD to the basics of the Americans with Disabilities Act
• Assist a child or adult in creating self-advocacy scripts that can be used in a variety of settings and situations.
Dealing with the diagnosis: Stages Associated with Grieving
Shock
Immediately after the diagnosis you may feel stunned or confused. The reality of the diagnosis may be so overwhelming that you're not ready to accept it or you initially ignore it. You may also question the diagnosis or search for another doctor who will tell
you something different.
Sadness or Grief
Many parents must mourn some of the hopes and dreams they held for their child before they can move on. There will probably be many times when you feel extremely sad. Friends may refer to this as being “depressed,” which can sound frightening.
There is, however, a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Crying can help release some of the tension that builds up when you try to hold in sadness. A good cry can get you over one hurdle and help you face the next.
Anger
With time, your sadness may give way to anger. Although anger is a natural part of the process, you may find that it's directed at those closest to you – your child, your spouse, your friend or at the world in general. You may also feel resentment toward parents of typical children. Your anger may come out in different ways – snapping at people, overreacting at small things, even screaming and yelling. Anger is normal. It is a healthy and expected reaction to feelings of loss and stress that come with this diagnosis. Expressing your anger releases tension. It's an attempt to tell the people around you that you hurt, that you are outraged that this diagnosis has happened to your child.
Denial
You may go through periods of refusing to believe what is happening to your child. You don't consciously choose this reaction; like anger, it just happens. During this time, you may not be able to hear the facts as they related to your child's diagnosis. Don't be critical of yourself for reacting this way. Denial is a way of coping. It may be what gets you through a particularly difficult period. You must, however, be aware of that you may be experiencing denial so that it doesn't cause you to lose focus on your child's treatment.
Try not to “shoot the messenger.” When someone, a professional, a therapist or a teacher, tells you something that is hard to hear about your child, consider that they are trying to help you so that you can address the problem. It is important not to alienate people who can give you helpful feedback and monitoring of your child's progress. Whether you agree or not, try to thank them for the information. If you are upset, try considering their information when you have had a chance to calm down.
Loneliness
You may feel isolated and lonely. These feelings may have many causes. Loneliness may also come from the fact that in your new situation you simply don't feel you have the time to contact friends or family for company or that, if you did reach out, they wouldn't understand or be supportive. In the pages that follow, we have some suggestions for taking care of yourself and for getting the support you need.
Acceptance
Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates.
Give yourself time to adjust
Be patient with yourself. It will take some time to understand your child's disorder and the impact it has on you and your family. Difficult emotions may resurface from time to time. There may be times when you feel helpless and angry that autism has resulted in
a life that is much different than you had planned. But you will also experience feelings of hope as your child begins to make progress.
Caring for the Caregiver
Changing the course of your child's life with autism can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions: Where does
your support and strength come from? How are you really doing? Do you need to cry? Complain? Scream? Would you like some help but don't know who to ask?
“Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.”
Parents often fail to evaluate their own sources of strength, coping skills, or emotional attitudes. You may be so busy meeting the needs of your child that you don't allow yourself time to relax, cry, or simply think. You may wait until you are so exhausted or
stressed out that you can barely carry on before you consider your own needs. Reaching this point is bad for you and for your family.
You may feel that your child needs you right now, more than ever. Your “to do” list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know here to start. There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better.
Acknowledging the emotional impact of autism and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Autism is a pervasive, multi-faceted disorder. It will not only change the way that you look at your child, it will change the way you look at the world. As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize.
Here are some tips from parents who have experienced what you are going through:
Get going. Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus
on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going.
Ask for help. Asking for help can be very difficult, especially at first. Don't hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or
cook dinner for your family one night so that you can spend the time learning: Can they pick a few things up for you at the store or do a load of laundry? Can they let other people know you are going through a difficult time and could use a hand?
Talk to someone. Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can't get out of the house, use the phone to call a friend. Link to Family Services
“At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!”
Consider joining a support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren't a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement. Link to AS Support Network
Try to take a break. If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it's possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back.
Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life.
Consider keeping a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes. Some parents have found a journaling a helpful tool for keeping track of their children's progress, what's working and what isn't.
Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.
Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions:
• Is what I'm reading right now very likely to be relevant to my child?
• Is it new information?
• Is it helpful?
• Is it from a reliable source?
Sometimes, the time you spend on the Internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself.
Fifteen Tips for Your Family
As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:
5 Tips for Parents
1. Learn to be the best advocate you can be for your child. Be informed. Take advantage
of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.
2. Don't push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It's OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry.
3. Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances.
4. Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they should be.
5. Get involved with the Autism community. Don't underestimate the power of “community”. You may be the captain of your team, but you can't do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.
5 Tips for Brothers & Sisters
1. Remember that you are not alone! Every family is confronted with life's challenges… and yes, autism is challenging… but, if you look closely, nearly everyone has something difficult to face in their families.
2. Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic…they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It's okay to feel your feelings. And, often it's easier when you have a professional counselor to help you understand them – someone special who is here just for you! Love your brother or sister the way they are.
3. While it is OK to be sad that you have a brother or sister affected by autism it doesn't help to be upset and angry for extended periods of time. Your anger doesn't change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.
4. Spend time with your Mom and Dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It's OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn't have autism, you would still need alone time with Mom and Dad.
5. Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
5 Tips for Grandparents and Extended Family
1. Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.
Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family's child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family's hearts to know that you are pitching in to create support and closeness.
2. Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.
3. Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system…but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.
4. Put judgment aside. Consider your family's feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best.
5. Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.
Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Yes, they may be different but both children look forward to spending time with you. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier…it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making.
A Child's Rights for Public Education
Your special needs child has the right to a free and appropriate education. The individuals with Disabilities Education Act (IDEA), which was first enacted in 1975 and most recently revised in 2004, mandates that each state provide all eligible children with a public education that meets their individual needs.
The Individuals with Disabilities Act (IDEA) was most recently revised in 2004 (and, in fact, renamed the Individuals with Disabilities Education Improvement Act, but most people still refer to it as IDEA). The law mandates that the state provide all eligible children with a free and appropriate public education that meets their unique individual needs.
IDEA specifies that children with various disabilities, including autism, are entitled to early intervention services and special education. If your child has been diagnosed with a form of autism, the diagnosis is generally sufficient to gain access to the rights afforded by IDEA. The IDEA legislation has established an important role for parents in their children's education. You, as a parent, are entitled to be treated as an equal partner with the school district in deciding on an education plan for your child and his or her individual needs. This enables you to be a powerful advocate for your child. It also means that you must be an informed, active participant in planning and monitoring your child's unique program and legal rights.
What is a “Free and Appropriate Public Education” (FAPE)?
As described previously, IDEA provides for a “free and appropriate education” for all children with disabilities. Each word in this phrase is important, but “appropriate” is the one that relates specifically to your special needs child. Your child is entitled to an
education that is tailored to his or her special needs and a placement that will allow them to make educational progress.
Although you and your child's teachers or therapists may want to provide your child with the best or optimal program and services, the school district is not required to provide the best or optimal but rather an appropriate education. One of the challenges here is working with the school district to determine what is appropriate and, therefore, what will be provided for your child. This is a collaborative process that may involve considerable negotiation to secure the services from the school.
What is “Least Restrictive Environment” (LRE)?
As specified in the IDEA, your child is also entitled to experience the “least restrictive environment.” This means that your child should be placed in the environment in which he or she has the greatest possible opportunity to interact with children who do not have a disability and to participate in the general education curriculum. This is commonly referred to as mainstreaming or inclusion. In the general education setting, providing the least restrictive environment can sometimes be accomplished with accommodations, such as using a one-on-one aide who is trained to work with children with autism. While it may be true that seeking the least restrictive environment is beneficial for children with autism, it's important to consider whether or not an option such as inclusion is right for
your child. It may or may not be more appropriate for your child to be placed in a special education program, in a school for children with special needs, or in a home instruction program.
Early Intervention Services (EI)
The IDEA provides states with federal grants to institute early intervention programs. Any child younger than age three who has a developmental delay or a physical or mental condition likely to result in a developmental delay is eligible to receive early intervention services through these programs. If a child is determined to be eligible, these early intervention services must be provided to the child at no cost.
EI services can vary widely from state to state and region to region. However, the services should address a child's unique needs rather than being limited to what is currently available or customary in your area. The document that spells out a child's needs and the services that will be provided is the Individual Family Service Plan (IFSP). The IFSP should be based on a comprehensive evaluation of a child. It should describe the child's current levels of functioning and the anticipated goals. It should also list the specific services that will be provided to a child and your family.
EI services are aimed at minimizing the impact of disabilities on the development of a child. Services for a child may include, but are not limited to, speech and language instruction, occupational therapy, physical therapy, Applied Behavior Analysis (ABA) and psychological evaluation. Services for families may include training to help reinforce the affected child's new skills and counseling to help the family adapt.
Special Education Services
Special education services pick up where early intervention services leave off, at age 3. Your local school district provides these services through their special education department. The focus of special education is different from that of early intervention.
While early intervention addresses your child's overall development, special education focuses on providing your child with an education, regardless of disabilities or special needs. The document that spells out your child's needs and how these needs will be met is the Individualized Education Program (IEP).
Like the IFSP, the IEP describes your child's strengths and weaknesses, sets goals and objectives, and details how these can be met. Unlike the IFSP, the IEP is almost entirely related to how the needs of your child will be met within the context of the school district and within school walls.
Extended School Year (ESY) Services
If there is evidence that a child experiences a substantial regression in skills during school vacations, he or she may be entitled to ESY services. These services would be provided over long breaks from school (summer vacation) to prevent substantial regression, but not to acquire new skills. It is important for the family to remain involved in determining appropriate goals, communicating with the educational team about progress, and working to provide consistency between home and school.
How to get Services Started for a Child?
For Early Intervention Services, if a child is under the age of three, call the local Early Intervention Agency. Contact information is included in the Resource Guide.
For Special Education Services, if a child is three or older, contact the local school district.
Before Service can be provided, it may be necessary to complete further assessments and evaluations. These may include:
• An Unstructured Diagnostic Play Session
• A Developmental Evaluation
• A Speech - Language Assessment
• A Parent Interview
• An Evaluation of Current Behavior
• An Evaluation of Adaptive or Real Life Skills
Having to wait for the completion of these additional evaluations, which may be required by the school district or Early Intervention, may be frustrating for parents. Often, the evaluations provide much more in-depth information about a child's symptoms, strengths and needs and will be helpful for accessing and planning therapy services in the long run.
If parents find they are spinning your wheels, waiting for them, there are things you can be doing to in the meantime. Talk to other parents about what services have been helpful for their children. Investigate the therapies outlined in the Treatment section. Start reading about autism--find books, magazines and other publications in our Resource Library.
“Keys to Successful Independent Living, Employment and a Good Social Life for Individuals with Autism and Asperger's”
by Temple Grandin
The autism spectrum is extremely variable ranging from a person who remains non-verbal to a brilliant scientist. In my work as an equipment designer for the meat industry, I have seen many undiagnosed, highly successful people with Asperger's Syndrome. The more structured upbringing of the 50's, 60's and 70's taught them social rules that have helped them to fit in. There people did computer programming, design, engineering, equipment maintenance and accounting. During my many interview, I have met radio engineers, television camera operators and journalists for both print and radio who were Asperger's. There successful journalists had the benefit of the same structured upbringing that I had. When I was growing up all the parents in my neighborhood had similar rules for behavior. The rules were the same at home, at the neighbor's house and at school. Unfortunately, there are some much younger talented individuals with Asperger's or high-functioning autism who have lost jobs because their upbringing was less structured. They were rude and would not obey the boss. I was taught at a young age that ruled comments about other people's appearance are not acceptable, and there were certain activities that I had to do because the whole family did them together. Going to church was boring to me, but most of the time I behaved in church because I was expected to. I learned that sometimes I had to do things that the grown-ups wanted me to do. This is an important skill to know. I could not have my way all the time. Providing structure and rules will be beneficial to all individuals in the autism spectrum, ranging from a brilliant individual with Asperger's to an individual who remains non-verbal. My mother had good instincts on when to enforce the rules and when to make exceptions. Below are some tips for success.
Differentiate Between Bad Behavior and Tantrums or Outbursts Caused By Sensory Overload: If an individual on the spectrum has tantrums or becomes aggressive in a large supermarket or a noisy restaurant the cause is likely to be sensory overload. Sensory overload and over-sensitivity to noise, fluorescent lights or strong odors is very distressing to the individual. When I was a child the ringing school bell hurt my ears like a dentist drill. Scratchy cloths felt like sandpaper in my underwear. Problems with sensory over-sensitivity often become worse with fatigue. Some sensory problems will need to be accommodated and others may be able to be treated. In my case, if our church had had loud amplified music I would not have been able to tolerate it. A reasonable accommodation would have been to find a different church, or wear earplugs during the service. Forcing a person who is experiencing sensory overload to stay in the situation that is causing the overload is painful, frightening and totally disorienting. Accommodations need to be made for sensory problems, but autism or Asperger's is no excuse for bad behavior. There were expectations for good behavior. Our church had a beautiful antique organ which I liked, and I was expected to sit quietly through the boring non-musical parts of the service. On Most Sundays I behaved because my mother expected it.
Learn Manners: I was taught to say "please" and "thank-you". This was constantly drilled into me, until it became automatic. Good table manners were expected and I had to learn to eat with my mouth closed. Since I have slight motor control problems, I was allowed to use a different grip on my fork while cutting meat. The important thing is to be neat. On some Sundays the family had a formal Sunday dinner at Granny's. All aspects of good manners were taught, like coaching an actor in a play.
Good Grooming: When I started living on my own I was a slob. My new boss at the feed lot construction company made it very plain to me that my grooming had to improve. I greatly resented it when he presented me with a container of deodorant and told me that my "pits stank". It is perfectly fine to be a little eccentric but dirty or ragged is not acceptable. Sensory problems often contribute to the tendency to get sloppy, because old worn clothes are less scratchy. Some simple ways to reduce this problem is to wash all new clothes that touch the skin before wearing them. Old soft underwear can be worn under a new shirt.
Learn Turn Taking and Sharing: When I was a child, my mother, nanny and teachers played many games that required turn taking. In the 50's most fun activities like board games and table hockey required turn taking. I also had to learn to share. An easy way to teach the concept of sharing is to divide up a bottle of juice between two or three individuals.
Learning Limits on Behavior and Consistent Discipline Between Home and School: The rules were the same at home and school. I knew that if I had a tantrum at school the teacher would call my mother and there would be no TV that night. When I was very little my mother allowed me to make a mess in my own room, but I was not allowed to wreck the rest of the house. I was allowed to go in the living room, but my parents made it very clear that this was a grown-up room and I knew I might get a whack on the rear if I wrecked it. I was always testing the limits. In our neighborhood the rules were the same in other people's homes. I behaved well in the places where the rules were enforced. However, there was on next door neighbor where there were almost no rules. I got inot lots of mischief with their son and we did some really destructive stuff such as gluing a door shut with epoxy and melting plastic chess pieces with a soldering iron. I would have never done that at home. Even non-verbal individuals test the limits. They know who will let them get away with things such as not doing chores and who will insist that they be done.
Develop Areas of Strengths: I was really good at drawing and things where I could use my visual thinking skills, and was terrible at algebra. One of the things that made my successful in my design business was developing my ability with drawing. Too often there is too much emphasis on the person's deficit and not enough emphasis on building in the strengths. People on the spectrum often have uneven skills and are good at one thing and bad at something else. I have observed that there are three basic types of specialized minds on the Autism/Asperger Spectrum. Some people are combinations of these three types.
A photo realistic visual thinker is good at drawing and poor at algebra. Some visual thinkers are good at geometry and trigonometry. My parents worked hard to encourage and nurture my art ability. Talents are like fragile flowers, they must be nurtured and cultivated.
A music and math mind thinks in patterns instead of photo realistic pictures, They often excel in engineering and computer programming. English may be their weak subject.
A verbal facts mind knows all the sports statistics and often likes history. These individuals are not visual thinkers. Some of these people make excellent journalists.
Expand Obsessive Interests Into Skills and Service Other People’s Needs: In my case, ranchers want custom designed cattle handling facilities, but they are not interested in constant obsessive talking about them. If an individual likes airplanes, then use the motivation of that fixation to teach other skills. Learning reading and improving writing skills can be motivated by using books about airplanes. Airplanes can also be used to motivate learning math and science. Mr. Carlock, my science teacher channeled my obsessions into learning science. I started to study because I now had a goal of becoming a scientist. There were many interesting science projects in Mr. Carlock's lab.
Find Mentors: Some of the most successful people with Asperger's Syndrome were apprenticed into the computer field by their parents. The parents taught their child computer programming at a young age. In my case, I did not become motivated to study until I was sixteen. Mr. Carlock, my science teacher, became interested in me because he recognized that I had abilities. Talent attracts mentors. One of the ways to find a mentor or a job is to make a portfolio of your work. I sold design jobs to major meat companies and ranchers by showing them portfolios of pictures and drawings of my designs. I sold my work not by personality. Even though I was weird, my work was respected.
Develop Good Work Skills: This tip applies to individuals on both the high and low ends of the spectrum The most basic skill is getting to work on time. When I was little I was taught this skill because I was expected to be ready at 7:30 so I would not be late for school. When I was 13 I had a sewing job two afternoons a week. In college I interned during the summer at a research lab and at a school for children with autism. I learned valuable work skills. I also had to learn that much of the work was Interesting, but there was also boring work that had to be done. When I was starting my design business, it took three years to learn cattle handling and facility design. Even though I had the innate ability of visual thinking, I had to work hard to develop my ability into a design business. Below are some tips to help you keep your job.
· Never tell other people that they are stupid even if they are stupid. Do not Tell dirty jokes or express your opinions on politics or religion at work.
· You have to do things that your boss tells you to do.
· Do not go over your boss' head unless a major project is going to fail or Your job is at risk.
· Freelance work is often easier because office politics is avoided.
· Ask for directions in writing so you do not have to remember long strings of verbal information. A good way to do this is to tell your boss that e-mail is a preferred method of communication.
· Avoid jobs that require multi-tasking such as cashier in a busy restaurant or a receptionist that has to answer phones and work at a computer at the same time.
· Ask for instructions that are not vague. Some examples of vague instructions are: develop some new software or clean-up the store. Some examples of clear instructions that are easy to understand with a clear goal and endpoint are: "Revise our computer program for handling client contacts so it will be easier to read on a small mobile telephone screen" or "Restock the cosmetic section shelves and pick-up the trash in the parking lot".
· Do not be a pest. When I was six, I was taught not to "wear out my welcome" by going over to a next door neighbor's house too often. At work, do not send 10 e-mails or leave 10 telephone messages to the same person in one day. Do not pester your boss throughout the day. Schedule a time each day to receive directions.
Socialize Through Shared Interests: When I was in high school teasing made my life miserable. My only refuge away from teasing was Mr. Carlock's science lab and horseback riding. The students who were interested in these activities were not the ones who did the teasing. Adults on the spectrum who have successful marriages are often married to a spouse who has a shared interest. I strongly encourage both children and adults on the spectrum to engage in activities where they can share in interests with somebody else. Most of my friends are either interested in livestock, animal behavior, autism or design work. Kids that are getting teased in high school should join school clubs in computer, robotics, journalism, math, poetry, drama, music or some other interest.
Try New Things: When I was 16, I was afraid to go on my first visit to my aunt's ranch. Going to a new place scared me. Fortunately, my mother made me go and she told me that I could come home after two weeks if I did not like it. It turned out that I loved it and the experiences there got me headed into my career of design of cattle facilities. Today, I am thankful that I was urged to try new things. Parents and teachers working with individuals on the spectrum need to be gently insistent about experiencing new things. There must be no surprises. A sudden unexpected change in a schedule can cause panic. Plans for visiting the ranch were made many weeks in advance. I also had to be urged to do simpler new things such as shopping for building materials all by myself. I was good at remodeling the house, but I was afraid to go shopping at the lumber yard on my own. Mother made me go, and even though I was upset, I did it. Mother knew just how hard to push. Too many things thrown at me all at once would have caused panic, but I had to be exposed to new experiences in order to develop.
Control Aggression and Anger: In my teenage years, I responded to teasing by throwing a book or with fists. I got kicked out of a large girl's school for throwing a book at a girl who called me a "retard". After that, I was sent to a special boarding school. I lost my horseback riding privilege after I got in a fight in the cafeteria. To regain horseback riding, I turned off aggression and switched to crying. Teasing still upset me but I responded with crying instead of fighting. This saved my career. My career would have been ruined if I had hit somebody or thrown something at work. Modulating emotion is usually impossible. Since emotion is sometimes extreme I had to know how to switch off aggression and replace it with crying. Often I cried at work, but I concealed it by finding a hidden spot in the cattle yard or basement.
Some Teenagers and Adults will need medication, special diets, or some other When I hit puberty, the anxiety and panic attacks were tearing me apart. Throughout my twenties, the panic attacks got worse and worse. A low dose of an anti- depressant stopped the constant anxiety. The big mistake made with anti-depressants is giving too high a dose. Often ½ to 1/3 of the starter dose is all that is needed. Autism and Aspergers is very variable. Some individuals absolutely do not need medications and there are others who respond well to the casein and gluten free diet. Other individuals will need Irlen lenses, prism glasses or auditory training to help reduce sensory problems. A laptop computer screen is often best for people with visual processing problems because it has less flicker. Go to the other parts of this website for more information. I have observed that some of the adults who are the most miserable and cannot keep a jog have either very severe sensory over-sensitivities or constant anxiety. In many cases no treatment is being done to alleviate these problems. I have observed several great successes in reducing very severe sensory over-sensitivity problems. A combination of a special diet, a low dose of conventional medication and Irlen lenses enabled these people to tolerate a normal office. Previously, a normal office environment with florescent lights caused sensory overload. Another thing that really helped me was lots of exercise. Exercise calmed me down and helped me sleep.
Remember, the autism/Asperger continuum is very variable. One person will have mild sensory problems and another will have severe sensory over-sensitivity. A treatment that works for one person may not work for another.
Limit Television Watching, Idle Web-Surfing and Video Games: I was allowed to watch one hour of television a day. If computers had been available in the 50's, playing video games would have been limited to one hour a day. These activities are highly addictive and the children and adults need to be doing activities which can lead to a career. Learning how to PROGRAM a video game should be encouraged, but playing them all day should be stopped. People on the spectrum have the intense concentration required to get really good at tasks that can turn into careers. Spending hours a day writing beautiful computer code, music or creating art work should be encouraged. Some of the most successful people on the spectrum are obsessed with their careers and they lead a happy productive life. Teachers and parents need to train the individual that he/she should get good at tasks that others want and appreciate. They will get self-esteem by being rewarded and recognized for their abilities. They can write code that will be successful in the marketplace or create art that other people will buy. It makes me happy when other people like my work. My parents actively developed my interest in drawing and art. When I painted really good painting of a beach, my mother had it put in a professional frame with real glass. This made me really proud. A professional frame communicated to me that the picture was professional quality and that motivated me. Pictures of lower quality were put on the refrigerator door.
NEVER, NEVER punish a child by taking away career related activities. When I was naughty, television was taken away for one night. Talents have to be nurtured. I have seen drawing skills crushed and never developed because art supplies were taken away. Computer use for video game playing can be taken away but NEVER take away computer use for career related activities such as learning programming or journalism.
Social Relatedness Versus Learning Social Skills: Individuals on the spectrum can learn many complex social rules and become really good at learning how to act on the stage of daily life. However, they may never be really emotionally related. Brain scans done on me and several other people on the spectrum by Nancy Minshew indicate that things are usually more interesting than people. We need people in this world who are interested in things. Back in the days of the caveman, the really social people did not make the first stone spear. All the electronic gadgets such as mobile telephones are made by people who have mild to moderate Asperger traits. I have read profiles of many leaders in high tech fields in the business magazines, and many Asperger traits are described. Several books are available which profile famous scientists, musicians, and artists who were either Aspergers or high-functioning autism. Einstein would have been diagnosed with autism if he had been born more recently. He had no speech until age 3. Simon Baren Cohen has done much work on the link between autism traits and creativity and genius. The happiest people on the spectrum socialize with others who have some shared interests.
Resources
Local:
Clear Horizons Academy
Scenic View Academy
State:
National:
Intellectual Disabilities:
Definition of Intellectual Disability:
Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18.
Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.
One criterion to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.
Standardized tests can also determine limitations in adaptive behavior, which comprises three skill types:
- Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
- Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
- Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
On the basis of such many-sided evaluations, professionals can determine whether an individual has an intellectual disability and can tailor a support plan for each individual.
But in defining and assessing intellectual disability, the American Association on Intellectual and Developmental Disabilities (AAIDD) stresses that professionals must take additional factors into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave.
Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.
WHAT CAUSES INTELLECTUAL DISABILITY?
There are a number of causes of intellectual disability. Our understanding of the causes of Intellectual Disability focuses on the types of risk factors (biomedical, social, behavioral, and educational) and the timing of exposure (prenatal, perinatal, and postnatal) to those factors.
Diagnostic Adaptive Behavior Scale:
AAIDD’s new Diagnostic Adaptive Behavior Scale (DABS) scheduled to be released in 2013 provides a comprehensive standardized assessment of adaptive behavior. Designed for use with individuals from 4 to 21 years old, DABS provides precise diagnostic information around the cutoff point where an individual is deemed to have “significant limitations” in adaptive behavior. The presence of such limitations is one of the measures of intellectual disability.
Adaptive behavior is the collection of conceptual, social, and practical skills that all people learn in order to function in their daily lives. DABS measures these three domains:
Conceptual skills: literacy; self-direction; and concepts of number, money, and time
Social skills: interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, following rules, obeying laws, and avoiding being victimized
Practical skills: activities of daily living (personal care), occupational skills, use of money, safety, health care, travel/transportation, schedules/routines, and use of the telephone
The DABS focuses on the critical ‘cut-off area’ for the purpose of ruling in or ruling out a diagnosis of intellectual disability or related developmental disability. Professionals likely to use it include school psychologists, forensic psychologists, clinical psychologists, psychometricians, social workers, occupational therapists, and pediatricians, as well as officials in disability-related government agencies.
The purpose of establishing a diagnosis of intellectual disability is to determine eligibility for:
Special education services
Home and community-based waiver services
Social Security Administration benefits
Specific treatment within the criminal justice system (e.g., In 2002, the U.S. Supreme Court ruled in Atkins v. Virginia that executing people with intellectual disability violates the Eighth Amendment’s ban on cruel and unusual punishment)
Different Types of Intellectual Disabilities:
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Recognised Types of Intellectual Disabilities:
1. ADHD
2. Angelman Syndrome
3. Asperger Syndrome
4. Autism
5. Cri Du Chat
6. Down’s Syndrome
7. Dysphagia
8. Dyspraxia
9. Dyslexia
10. Epilepsy
11. Fragile X
12. Klinefelter Syndrome
13. Pervasive Developmental Disorder
14. Prader-Willi Syndrome
15. Rett’s Syndrome
16. Trisomy
17. Sotos Syndrome
18. Tourette’s Syndrome
19. Tuberous Sclerosis
20. William’s Syndrome
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Children with Learning Disabilities:
The label learning disability refers to a category of children and does not describe the specific deficit or dysfunction of the child or the specific academic or achievement problem of the child. The label assists persons in identifying and classifying children who need special help. Their neurological patterns seem somewhat different from those of children of the same age without disabilities. Persons with learning disabilities have in common some types of failure in school or community. They are not able to do what others with the same level of intelligence are able to do. The prevalence of children with learning disabilities range from 1 – 30%. “Specific learning disability” means a disorder in one or more of basic psychological process involved in using language, spoken or written, which 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 handicaps, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does include children who have learning problems which are primarily the result of visual, hearing, or motor handicaps, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.
The definition has four criteria that teachers must consider when identifying students with learning disabilities, as discussed below:
1. Academic difficulties. The child with learning disabilities has difficulty in learning how to read, write, spell, organize thoughts or do mathematical calculations, compared with other children of the same age.
2. Discrepancy between potential and achievement. The child with learning disabilities experiences a serious discrepancy between intellectual ability and achievement in school; this is known as an aptitude-achievement discrepancy.
3. Exclusion of other factors. A person may not be classified as having learning disabilities if the learning problem is caused by visual or hearing impairments, mental retardation, motor disabilities, emotional disturbance, or environmental factors.
4. Neuropsychological disorder. Basic learning disabilities are the result of some types of neuropsychological disorder.
A learning disability is also defined as one with more basic psychological processes involved in using spoken or written language, which may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations.
Learning disabilities is also defined as a generic term that refers to a heterogeneous group of disorders that are manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning, or mathematical abilities. These disorders are intrinsic to the individual and are presumed to be the central nervous system dysfunction. Even though a learning disability may occur concomitantly with other handicapping conditions (e.g. sensory impairment, mental retardation, social and emotional disturbances, insufficient/inappropriate instruction, psychogenic factors), it is not the real result of those conditions or influences.
Children with Behaviour and Emotional Disorders
The prevalence of behaviour disorder greatly varies from one source to the next ranging from 0.005 to 15.0%. It is not easy to define behaviour and emotional problems in children. Most definitions assume that a child with a behaviour disorder, or serious emotional disturbance, reveal consistent “age-inappropriate behaviour” leading to social conflict, personal unhappiness, and school failure.
A behaviour disorder implies that the child is causing trouble for someone else. Serious emotional disturbance can be merely manifesting personal unhappiness. But almost all children reveal age-inappropriate behaviour at one time or another. Moreover, a child‘s behaviour is not the only variable that determines classification in this category. The person who perceives the child’s behaviour as “inappropriate” plays a key role in the decision. Cleary, some kinds of behaviour, such as physical attacks, constant weeping or unhappiness, and extreme hyperactivity, are unacceptable in any setting. But the acceptability of a wide range of other behaviours depends on the attitude of the perceiver.
- An inability to learn that cannot be explained to be intellectual, sensory, or health factors;
- An inability to build or maintain satisfactory interpersonal relationships with peers and teachers;
- Inappropriate types of behaviour or feelings under normal circumstances:
- A general pervasive mood of unhappiness or depression; or A tendency to develop physical symptoms or fears associated with personal or school problems.
Children with Communication Disorders
A communication disorder is impairment in the ability to receive, send, process, and comprehend concepts of verbal, non- verbal, and graphic symbol systems. A communication disorder may be evident in the processes of hearing, language, and/or speech. A communication disorder may range in severity from mild to profound, it may be developmental or acquired. The individuals may demonstrate one or any combination of communication disorders. A communication disorder may result in a primary disability or it may be secondary to other disabilities. The prevalence of speech and language disorders is estimated to be between 7 and 10 %.
- A speech disorder is an impairment of the articulation of speech, sounds, fluency, and/or voice.
- An articulation disorder is a typical production of speech sounds characterized by substitutions, omissions, additions or distortions that may interfere with intelligibility.
- A fluency disorder is an interruption in the flow of speaking characterized by a typical rate, rhythm, and repetitions in sounds, syllables, words and phrases. This can be accompanied by excessive tension, struggle behaviour, and secondary mannerisms.
- A voice disorder is characterized by the abnormal production and/or absence of vocal quality, pitch, loudness, resonance, and/or duration, which is inappropriate for an individual’s age and/or sex.
Treatment of an Intellectual Disability:
There is no cure for intellectual disability, but services and supports play an important role and can enable the person to thrive throughout their lifetime. Services for people with intellectual disabilities and their families are primarily there to provide adequate support to allow for full inclusion in their communities. These services touch their daily lives (education, justice, housing, recreational, employment, health care, etc.) and may include:
- Case management (a case manager helps the person apply for Medicaid in order to get a variety of supports including daily living needs, health care and long term care services and supports)
- Family support (for example, respite care)
- Vocational programs
- Day programs
- Residential options
- Early intervention
- Special education
- Transition services
- Patience
- Understanding
- Therapeutic Recreation!
Supports include the resources and individual strategies necessary to promote the development, education, interests, and well-being of a person. Supports can come from family, friends and community or from a service system. Job coaching is an example of a support provided by a service system. Supports can also be provided by a parent, sibling, friend, teacher or any other person, such as a co-worker who provides a little extra support to someone on the job. Supports are provided in many settings, and a “setting” or location by itself is not a support.
Resources:
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