Educating children with autism

Catherine Lord and James P. McGee; 
​Committee on Educational Interventions for Children with Autism

Banyak buku dan jurnal apalagi artikel sudah saya baca dan coba pelajari, untuk mendampingi proses pengasuhan anak sulung saya, my sonshine. Dari tahap denial, hingga menerima, dan mencoba mencari segala macam cara agar dapat memfasilitasi ke spesialan anak sulung saya ini. Label, banyak label, ASD, autis, ADHD, Speech delayed, for me its just a label, label yang memberikan saya kata kunci, search ke literatur-literatur, semoga saya dapat mendampingi, memberikan pengasuhan yang tepat, pengajaran yang maksimal, untuk Mas Aidan hingga dia independent, mandiri dan mampu bertahan hidup sendiri. 
karena akan membutuhkan waktu untuk translation, jadi, ya sekalian belajar bahasa inggrislah yaaa.. haha..

​Autistic spectrum disorders vary in severity of symptoms, age of onset, and the presence of various features, such as mental retardation and specific language delay. The manifestations of autistic spectrum disorders can differ considerably across children and within an individual child over time.
Although children with autistic spectrum disorders share some characteristics with children who have other developmental disorders and may benefit from many of the same educational techniques, they offer unique challenges to families, teachers, and others who work with them.
Their deficits in nonverbal and verbal communication require intense effort and skill even in the teaching of basic information. The unique difficulties in social interaction (e.g., in joint attention) may require more individual guidance than for other children in order to attract and sustain their children’s attention.
Moreover, ordinary social exchanges between peers do not usually occur without deliberate planning and ongoing structuring by the adults in the child’s environment. The absence of typical friendships and peer relationships affects children’s motivation systems and the meaning of experiences. Appropriate social interactions may be  some of the most difficult and important lessons a child with autistic spectrum disorders will learn. In addition, the frequency of behavior problems, such as tantrums and self-stimulatory and aggressive behavior, is high. 

DIAGNOSIS, ASSESSMENT, AND PREVALENCE

Autistic spectrum disorders have effects on development in ways that affect children’s educational goals and the appropriate strategies to reach them.  The deficits in language development, nonverbal communication, cognitive abilities, and other areas have distinct effects on behavior and outcome in ways that have implications for the educational goals of children with autistic spectrum disorders and other children.
However, it is not yet clear the degree to which specific educational goals and strategies are associated with particular diagnoses within the autism spectrum, such as Asperger’s Disorder, Childhood Disintegrative Disorder, or PDD-NOS, once factors such as language development and cognitive abilities are taken into account.

A child who receives a diagnosis of an autistic spectrum disorder should be eligible for special educational programming under the educational category “autism” regardless of the specific diagnostic category within the autism spectrum.

With adequate time and training, the diagnosis of autism can be made reliably in 2-year-olds by professionals experienced in the diagnostic assessment of young children with autistic spectrum disorders, and children are beginning to be referred even before age two years. Many families express concern about their children’s behavior, usually to health professionals, even before this time, and more children are being referred for specific educational interventions for autistic spectrum disorders.
However, diagnostic and screening instruments effective with children under age 2 have not yet been identified. Although children with autistic spectrum disorders share some disabilities with children with other developmental disorders, they offer unique challenges to families, teachers, and others who work with them, particularly in nonverbal and verbal communication and behavioral problems.

FEATURES OF AUTISM

Autism is a disorder that is present from birth or very early in development that affects essential human behaviors such as social interaction, the ability to communicate ideas and feelings, imagination, and the establishment of relationships with others. It generally has life-long effects on how children learn to be social beings, to take care of themselves, and to participate in the community.

Autism is a developmental disorder of neurobiological origin that is defined on the basis of behavioral and developmental features. Although precise neurobiological mechanisms have not yet been established, it is clear that autism reflects the operation of factors in the developing brain.
As yet, known direct links between pathophysiology and behavior in autism are still rare and have not yet had great influence on treatments or diagnoses (see Rumsey et al., 2000). Autism is best characterized as a spectrum of disorders that vary in severity of symptoms, age of onset, and associations with other disorders (e.g., mental retardation, specific language delay, epilepsy). The manifestations of autism vary considerably across children and within an individual child over time.

There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism, even though there are strong and consistent commonalities, especially in social deficits.

THE CHALLENGE OF EDUCATING CHILDREN WITH AUTISM

Education, both directly of children, and of parents and teachers, is currently the primary form of treatment in autism. On this report, education is defined as the fostering of acquisition of skills or knowledge—including not only academic learning, but also socialization, adaptive skills, language and communication, and reduction of behavior problems—to assist a child to develop independence and personal responsibility.
 
Education includes services that foster the acquisition of skills and knowledge, offered by public and private schools; infant, toddler, preschool, and early education programs; and other public and private
service providers. Young children are defined here as children 8 years or younger. Because children with autism are at high risk for other impairments, educational planning must address both the needs typically associated with autistic spectrum disorders and needs associated with accompanying disabilities.

PREVALENCE OF AUTISM AND RELATED CONDITIONS

Epidemiological studies and service-based reports indicate that the prevalence of autistic spectrum disorders has increased in the last 10 years, in part due to better identification and broader categorization by educators, physicians, and other professionals.
Epidemiological studies of autism have important implications for both research and clinical service, for example, through helping to plan for the need for special services and selecting samples for research studies.

Fombonne (1999) has recently summarized the available research on this topic and systematically reviewed more than 20 studies conducted in ten countries, as below:

• He notes that, although important details were sometimes lacking in the studies, the total population base included in the review was approximately 4 million children surveyed.
• Studies have typically employed a two-stage design, with an initial screening followed by more systematic assessment.
• Complexities in interpreting the available data include variations in approaches to the diagnosis of autism and differences in screening methods.
• In the studies surveyed, approximately 80 percent of individuals with autism also exhibited mental handicaps (i.e., mental retardation).
• Studies have also consistently identified more boys with autism than girls (three to four boys for every girl).
• In addition, girls with autism are more likely than boys to also exhibit mental handicaps.

 

SCREENING INSTRUMENTS

The symptoms of autism are often measurable by 18 months of age (Charman et al., 1997; Cox et al., 1999; Lord, 1995; Stone et al., 1999; Baird et al., 2000). The main characteristics that differentiate autism from other developmental disorders in the 20-month to 36-month age range involve behavioral deficits in eye contact, orienting to one’s name, joint attention behaviors (e.g., pointing, showing), pretend play, imitation, nonverbal communication, and language development (Charman et al., 1997; Cox et al., 1999; Lord, 1995; Stone et al., 1999).  

There are three published screening instruments in the field that focus on children with autism:
1. The Checklist for Autism in Toddlers (CHAT) (Baird et al., 2000)
is designed to screen for autism only at 18 months of age. The CHAT was less sensitive to milder symptoms of autism; children later diagnosed with other autistic spectrum disorders did not routinely fail the CHAT at 18 months. Follow-up of the cases at age 7 revealed that this instrument had a high specificity (98%) but relatively low sensitivity (38%) (Baird et al., 2000), suggesting that it is not appropriate for screening.

The Autism Screening Questionnaire (Berument et al., 1999),
is a new 40-item screening scale that has good discriminative validity between autistic spectrum and other disorders, including nonautistic mild or moderate mental retardation, in children age 4 years and older; it has not yet been tested with very young children.
​A score of 1 is given for an item if the abnormal behavior is present and a score of 0 if the behavior is absent. The cutoff for consideration of a diagnosis of autism is a score of 15 or higher. Further reliability studies and validation studies in younger children are ongoing.

The Screening Test for Autism in Two-Year-Olds (Stone et al., 2000).
is a direct observational scale; it showed good discrimination between children with autism and other developmental disorders in a small sample of two-year-old children.

Several additional instruments are currently undergoing validation studies.

ASSESSMENT

Several principles underlie the assessment of a young child with autism or ASD (Sparrow, 1997):

1. Multiple areas of functioning must typically be assessed, including current intellectual and communicative skills, behavioral presentation, and functional adjustment.
2. A developmental perspective is critical. Given the strong association of mental retardation with autism, it is important to view results within the context of the overall developmental level.
3. Variability of skills is typical, so it is important to identify a child’s specific profile of strengths and weaknesses rather than simply present an overall global score. Similarly, it is important not to generalize from an isolated or “splinter” skill to an overall impression of a general level of ability, since such skills may grossly misrepresent a child’s more typical abilities.
4. Variability of behavior across settings is typical. The behavior of a child will vary depending on such aspects of the setting as a novelty, degree of structure provided, and complexity of the environment; in this regard, observation of facilitating and detrimental environments is helpful.
5. Functional adjustment must be assessed. Results of specific assessments obtained in more highly structured situations must be viewed in the broader context of a child’s daily and more typical levels of functioning and response to real-life demands. The child’s adaptive behavior (i.e., capacity to translate skills into real-world settings) is particularly important.
6. Social dysfunction is perhaps the most central defining feature of autism and related conditions, so it is critical that the effect of a child’s social disability on behavior be considered.
   
7. Behavioural difficulties also must be considered, since they affect both the child’s daily functioning and considerations for intervention.

​The range of syndrome expression in autism and autistic spectrum disorders is quite broad and spans the entire range of IQ (Volkmar et al., 1997).
A diagnosis of autism or autistic spectrum disorder can be made in a child with severe or profound mental retardation as well as in a child who is intellectually gifted.
Evaluators must consider the quality of the information obtained (both in terms of reliability and validity), the involvement of parents and teachers, the need for interdisciplinary collaboration, and the implications of results for intervention.
​These include obtaining a thorough developmental and health history, a psychological assessment, a communicative assessment, medical evaluation, and, in some cases, additional consultation regarding aspects of motor, neuropsychological, or other areas of functioning (Filipek et al., 1999; Volkmar et al., 1999). This information is important both to diagnosis and differential diagnosis and to the development of the individual educational intervention plan.

​The psychological assessment should establish the overall level of cognitive functioning as well as delineate a child’s profiles of strengths and weaknesses (Sparrow, 1997). This profile should include consideration of a child’s ability to remember, solve problems, and develop concepts. Other areas of focus in the psychological assessment include adaptive functioning, motor and visual-motor skills, play, and social cognition.
 
The choice of assessment instruments is a complex one and depends on the child’s level of verbal abilities, the ability to respond to complex instructions and social expectations, the ability to work rapidly, and the ability to cope with transitions in test activities (the latter often being a source of great difficulty in autism). Children with autism often do best when assessed with tests that require less social engagement and less verbal mediation.

Difficulties in communication are a central feature of autism, and they interact in complex ways with social deficits and restricted patterns of behavior and interests in a given individual. Accurate assessment and understanding of levels of communicative functioning is critical for effective program planning and intervention.
The selection of appropriate assessment instruments, combined with a general understanding of autism, can provide important information for purposes of both diagnostic assessment and intervention.
In addition to assessing expressive language, it is very important to obtain an accurate assessment of language comprehension. The presence of oral-motor speech difficulties should be noted. In children with autism, the range of communicative intents may be restricted in multiple respects (Wetherby et al., 1989). Delayed and immediate echolalia are both common in autism (Fay, 1973; Prizant and Duchan, 1981) and may have important functions.

MEDICAL CONSIDERATIONS

For very young children, there may be concerns about the child recognized or first expressed in the context of well-child care. The education of physicians, nurses, and others regarding warning signs for autistic spectrum disorders is very important. After initial referral for assessment and diagnosis, consultations with other medical professionals may be indicated, depending on the context (Filipek et al., 1999; Volkmar et al., 1999.)

The available literature has documented that child with autism are at risk for developing seizure disorders throughout the developmental period (Deykin and MacMahon, 1979; Volkmar and Nelson, 1990). Seizure disorders in autism are of various types and may sometimes present in unusual ways. 

A child’s hearing should be tested, but behavioral problems may sometimes complicate assessment. Definitive documentation of adequate hearing levels should then be obtained through other methods, such as auditory brainstem evoked responses (BSERs) (Klin, 1993). 

​In some cases, the use of psychotropic medications may be indicated for young children (see Chapter 10). Although not curative, such medications may help to reduce levels of associated maladaptive behaviors and help children profit from educational programming. The use of such agents requires careful consideration of potential benefits and risks and the active involvement of parents and school staff (see Volkmar et al., 1999 for a review).

Family Roles

​Parents of young children with autism play multiple roles in their children’s life. Often they are the first people to recognize a developmental problem, and they must pursue their concern until they receive a satisfactory diagnosis and find or develop appropriate services for their child. Once they find a suitable treatment program, parents typically are active partners in their child’s education to ensure that skills learned in the educational program transfer to the home setting and to teach their child the many behaviors that are best mastered in the home and community.
 
In order to provide an appropriate education for their child, parents of children with autism need specialized knowledge and skills and scientifically based information about autism and its treatment. Prime among these are the mastery of specific teaching strategies that enable them to help their child acquire new behaviors and an understanding of the nature of autism and how it influences their child’s learning patterns and behavior. Parents also need to be familiar with special education law and regulations, needed and available services, and how to negotiate on behalf of their child. In addition, some parents need help coping with the emotional stress that can follow from having a child with a significant developmental disorder.

SPECIAL DEMANDS ON PARENTS

​Research suggests that while many families cope well with these demands, the education of a child with autism can be a source of considerable stress for some families (see, e.g. Bristol et al., 1988; Harris, 1994). In general, mothers report more stress than do fathers, often describing issues related to time demands and personal sacrifice (e.g., Konstantareas et al., 1992). Among specific concerns expressed by mothers are worry about their child’s welfare in the years ahead, the child’s ability to function independently, and the community’s acceptance of their child (Koegel et al., 1992). Mothers of children with autism also report more stress in their lives than do mothers of children with other disabilities (e.g., Rodrigue et al., 1990).
Fathers of children with autism or Down syndrome report more disruption of planning family events and a greater demand on family finances than do fathers whose children are developing typically. 

​The time spent working with a child with autism is sometimes stressful and demanding, but it also has the potential to reduce family distress and enhance the quality of life for the entire family including the child with autism (Gallagher, 1991).
Techniques such as individualized problem solving, in-home observations and training, and didactic sessions have been employed with families. Mothers who learned skills based on the TEACCH model of education for their child showed a decrease in depressive symptoms over time in comparison with a group of mothers not given this training (Bristol et al., 1993). Koegel et al. (1996) reported that teaching parents how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the parents in the interaction, less stress, and a more positive communication style.
The use of effective teaching methods for a child with autism can have a measurable positive impact on family stress. As a child’s behavior improves and his or her skills become more adaptive, families have a wider range of leisure options and more time for one another (Koegel et al., 1984). To realize these gains, parents must continue to learn specialized skills enabling them to meet their child’s needs.

Goals for Educational Services

There are many different goals for the education of young children with autism. Education provides opportunities for the acquisition of knowledge and skills that support personal independence and social responsibility (Kavale and Forness, 1999). 
These goals imply continuous progress in social and cognitive abilities, verbal and nonverbal communication skills, adaptive skills, amelioration of behavioral difficulties, and generalization of abilities across multiple environments. In some cases, reports have suggested that particular treatments can foster permanent “recovery”. However, as with other developmental disabilities, the core deficits of autistic spectrum disorders have generally been found to persist, to some degree, in most individual

​There are many behaviors that ordinary children learn without special teaching, but that children with autism may need to be taught (Klin, 1992). A preschool child with autism may have learned to count backwards on his own, but may not learn to call to his mother when he sees her at the end of the day without special teaching. A high school student with autism may have excellent computer skills but not be able to decide when she needs to wash her hair. 

Appropriate educational objectives for children with autistic spectrum disorders should be observable, measurable behaviors and skills. These objectives should be able to be accomplished within 1 year and expected to affect a child’s participation in education, the community, and family life. They should include the development of:

1. Social skills to enhance participation in family, school, and community activities (e.g., imitation, social initiations and response to adults and peers, parallel and interactive play with peers and siblings);
2. Expressive verbal language, receptive language, and nonverbal communication skills;
3. A functional symbolic communication system;
4. Increased engagement and flexibility in developmentally appropriate tasks and play, including the ability to attend to the environment and respond to an appropriate motivational system;
5. Fine and gross motor skills used for age appropriate functional activities, as needed;
6. Cognitive skills, including symbolic play and basic concepts, as well as academic skills;
7. Replacement of problem behaviors with more conventional and appropriate behaviors; and
8. Independent organizational skills and other behaviors that underlie success in regular education classrooms (e.g., completing a task independently, following instructions in a group, asking for help).

Ongoing measurement of educational objectives must be documented in order to determine whether a child is benefiting from a particular intervention. Every child’s response to the educational program should be assessed after a short period of time. Progress should be monitored frequently and objectives adjusted accordingly.

CHARACTERISTICS OF EFFECTIVE INTERVENTIONS

Characteristics of the most appropriate intervention for a given child must be tied to that child’s and family’s needs. However, without direct evaluation, it is difficult to know which features are of greatest importance in a program. Across primarily preschool programs, there is a very strong consensus that the following features are critical:

1. entry into intervention programs as soon as an autism spectrum diagnosis is seriously considered;
2. active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child’s choronological age and developmental level;
3. repeated, planned teaching opportunities generally organized around relatively brief periods of time for the youngest children (e.g., 15-20 minute intervals), including sufficient amounts of adult attention in one-to-one and very small group instruction to meet individualized goals;
4. inclusion of a family component, including parent training;
5. low student/teacher ratios (no more than two young children with autistic spectrum disorders per adult in the classroom); and
6. mechanisms for ongoing program evaluation and assessments of individual children’s progress, with results translated into adjustments in programming.

Curricula across different programs differ in a number of ways. They include the ways in which goals are prioritized, affecting the relative time spent on verbal and nonverbal communication, social activities, behavioral, academic, motor, and other domains. Strategies from various programs represent a range of techniques, including discrete trials, incidental teaching, structured teaching, “floor time”, and individualized modifications of the environment, including schedules.

Some programs adopt a unilateral use of one set of procedures, and others use a combination of approaches. Programs also differ in the relative amount of time spent in homes, centers, or schools, when children are considered ready for inclusion into regular classrooms, how the role of peers as intervention agents is supported, and in the use of distraction-free or natural environments.

Programs also differ in the credentials that are required of direct support and supervisory staff and the formal and informal roles of collateral staff, such as speech language pathologists and occupational therapists.

 An effective treatment are made on the basis of empirical findings, information from selected representative
programs, and findings in the general education and developmental literature. In particular, it is well established that children with autism spend much less time in focused and socially directed activity when in unstructured situations than do other children. Therefore, it becomes crucial to specify time engaged in social and focused activity as part of a program for children with autistic spectrum disorders.

Based on a set of individualized, specialized objectives and plans that are systematically implemented, educational services should begin as soon as a child is suspected of having an autistic spectrum disorder.
A child must receive sufficient individualized attention on a daily basis so that individual objectives can be effectively implemented; individualized attention should include individual therapies, developmentally appropriate small group instruction, and direct one-to-one contact with teaching staff.

Assessment of a child’s progress in meeting objectives should be used on an ongoing basis to further refine the IEP [individualized education plan]. Lack of objectively documentable progress over a 3 month period should be taken to indicate a need to increase intensity by lowering student/teacher ratios, increasing programming time, reformulating curricula, or providing additional training and consultation.
​
To the extent that it leads to the specified educational goals (e.g., peer interaction skills, independent participation in regular education), children should receive specialized instruction in settings in which ongoing interactions occur with typically developing children.

​Six kinds of interventions should have priority:

1. Functional, spontaneous communication should be the primary focus of early education. For very young children, programming should be based on the assumption that most children can learn to speak. Effective teaching techniques for both verbal language and alternative modes of functional communication, drawn from the empirical and theoretical literature, should be vigorously applied across settings.
2. Social instruction should be delivered throughout the day in various settings, using specific activities and interventions planned to meet age-appropriate, individualized social goals (e.g., with very young children, response to maternal imitation; with preschool children, cooperative activities with peers).
3. The teaching of play skills should focus on play with peers, with additional instruction in appropriate use of toys and other materials.
4. Other instruction aimed at goals for cognitive development should also be carried out in the context in which the skills are expected to be used, with generalization and maintenance in natural contexts as important as the acquisition of new skills. Because new skills have to be learned before they can be generalized, the documentation of rates of acquisition is an important first step. Methods of introduction of new skills may differ from teaching strategies to support generalization and maintenance.
5. Intervention strategies that address problem behaviors should incorporate information about the contexts in which the behaviors occur; positive, proactive approaches; and the range of techniques that have empirical support (e.g., functional assessment, functional communication training, reinforcement of alternative behaviors).
6. Functional academic skills should be taught when appropriate to the skills and needs of a child.