Autistic Spectrum Disorder Guide
In appropriately written, individualized education program or intervention plan for an individual with autism is based on knowledge of current, relevant research, effective practices, and recognition of the wide range of characteristics that are classified as symptoms of various autistic spectrum disorders (ASD).
Methods or combinations of approaches are available for the education and treatment of individuals with ASD. The selection of interventions and the development of curricula are dependent upon a variety of factors relating to the needs of the individual and the family. The individualized family service plan (IFSP), individualized program plan (IPP), individualized education program (IEP), and/or any other service plan reflect informed, comprehensive assessment procedures and can be delivered in settings designated by the program team.
The ongoing appropriateness and effectiveness of each plan is contingent on periodic review of each person’s progress as well as the identification and provision of needed resources and staff training.
The following principles of best practice are intended to institute shared responsibility and collaboration among parents, schools, and regional centers. They apply to therapy or instructional intervention directed at individuals from infancy through age twenty-one who have a diagnosis of ASD.
Principles of Providing Services for Individuals with Autistic Spectrum Disorders
An effective therapy/treatment or instructional program is:
Any intervention or instructional program that is not effective in meeting documented needs of the child/student is revised or discontinued.
A program based on these guiding principles and the components outlined in the following sections can maximize the student’s development of academic skills, social comfort, and competence, including the ability to communicate with others, and independence in the performance of functional life skills.
PARENTAL INVOLVEMENT
A collective, collaborative process between professionals and parents requires - each party to share their expertise and resources, respecting the other’s "efforts and contributions towards the development of a comprehensive intervention plan. While trust and mutual respect evolve over time and should not be seen as prerequisites for beginning to work together effectively, the willingness of both parents and professionals to begin their relationship with confidence in the other’s abilities is the first step toward that process.
From the outset, parents are going to be interacting with a service delivery system that is complex and sometimes frustrating. Parents will be coping not only with the day-to-day stress of their child’s behavior, and often nighttime sleep disorders, but also with the course of unpredictable outcomes associated with autistic spectrum disorders.
All parents should be expected to participate in the development and implementation of their child’s program to the extent that they are able. Most parents are tremendously motivated to help their children but vary greatly in how the motivation manifests itself. Some have the time, money, temperament, and educational background to "specialize" in one variant of a disability to an extent that professionals usually cannot. Such parents will often have current knowledge about ASD treatments that can be shared with professional staff. Other parents, also as motivated, are temporarily or permanently in positions in which they must rely heavily on the expertise and resources of educational and other service agencies.
Parents need to have confidence that professionals with whom they deal will:
Growing knowledge and public awareness of ASD have created a situation in which many professionals are learning and trying new approaches. It is essential for parents to recognize that professionals have studied and practiced strategies that can be extremely effective with their children. Furthermore, treatment is often a "trial-and-error" process in which even the most skillful interventions do not always lead to immediate desired results. Subsequently, more frequent review of the service plan may be required to modify and/or create new strategies.
To enhance the child’s abilities, generalize skills, and maximize potential, parents are often required to extend communication beyond the traditional parent- teacher or parent-professional models. It is imperative to successful collaboration that the following occur:
Parents and professionals are honest with each other about their long-term goals for the child. These long-term goals guide professional recommendations and parents’ expectations. Both parents and professionals refrain from making assumptions about the other’s level of knowledge and accept responsibility for openly sharing and receiving information. High-quality training with frequent, consistent follow-up is given jointly to parents and professionals. This allows each party the skills necessary to help the child make gains, create strategies to solve problems, reinforce appropriate behaviors, and generalize new skills across domains.
If all parties come together with a commitment to open communication and child advocacy, the goal of mutual trust and respect can be met. With mutual trust and respect, parents and professionals can work effectively in a cooperative and collaborative environment. Our high expectations for children with autism can be realized through this supportive process.
More and more school professionals and service providers have concluded that to be successful in their work there must be a commitment to a high degree of professional sharing. Specifically, there must be sharing of educational tools, professional skills and, most importantly, a shared responsibility for all children with ASD. There was general consensus that collaboration among all service agencies is an effective and unifying means to achieve this end.
Parent-professional partnerships add to the strength of effective service delivery systems and intervention plans. The child is understood in the context of the family environment. Adjustments to this environment are the key to educational, behavioral, or adaptive changes in the child. Thus, the agents of change, including teachers, service providers, and community members extend to the family and other key individuals in the child’s world.
Once an agency receives a referral, that agency, with parental consent, initiates a collaborative dentification and information-sharing process with other responsible agencies. Agencies respond to families in a timely manner. Agencies assist families by offering support in understanding autism. Agencies assist families in accessing services by sharing and providing information and program options available for the child and family. Parents are encouraged to be full partners in the collaborative process.
Comprehensive assessment and evaluation set the foundation for the overall quality and appropriateness of final recommendations in an individualized family services plan (IFSP), an individualized program plan (IPP), and an individualized education program (IEP) that may include transition services as appropriate. The success of an individualized early intervention and education program begins with accurate assessment. A thorough developmental assessment not only identifies the child’s strengths and needs from which realistic teaching objectives are designed, but also establishes a baseline against which measures of progress can be made. More important, pre-intervention assessment data, when interpreted by experienced professionals and educators and shared with parents, shape parents’ expectations about the course and outcome of treatment.
The stress of receiving a confirmed diagnosis of autism and possibly mental retardation complicates the task of communicating developmental information. Nevertheless, accurate assessment data, presented to parents in an objective, sensitive, and caring manner, is indispensable preparation for contemplating an early intervention or educational program. It is the assessment team’s responsibility to gather, present, and openly discuss relevant information needed by parents of a child diagnosed with ASD. Professionals are responsible for sharing the information with parents to reach a mutual and realistic expectation of instructional outcomes as well as an understanding of alternative approaches.
Assessment and intervention are ongoing processes; they require the in- formation gained to be continuously fed back into the system to influence the intervention plan and, ultimately, the outcome.
Parents are encouraged to actively participate in the assessment process to assure that any assessment is reflective of the child’s functioning within the family setting or from the parent’s perspective. Agencies collaborate in the assessment process to reduce duplication, cost, and stress on the child and family.
Participating agencies are encouraged to jointly plan the assessment process, which determines program eligibility and service needs. Results of the assessment are integrated into the IFSP, IPP, and/or IEP.
The need for ongoing reassessment is determined by the collaborative team’s review of progress (or suspected lack of progress) in achieving individual program objectives and curriculum goals.
Assessment domains may differ as a result of an individual’s age, developmental level, diagnosis, and areas of need. The domains may include, but are not limited to, the following:
Methods of assessment are individualized based on age, developmental level, diagnosis, and areas of need and may include:
Individual programs will differ from child to child because of the uniqueness of the autistic disorder. Programs require a structured, collaborative effort as determined by the IEP, IFSP, and/or IPP team process to meet the needs of the individual and family.
A consensus has emerged among researchers, practitioners, and educators that appropriate intervention/education begins early, usually by thirty months. Teaching objectives are comprehensive and the child is given opportunities to generalize learned behavior. Individual differences must be recognized in deter- mining program intensity.
Positive outcomes are a direct result of intensity and consistency of intervention across home, school, and community environments. The range of options can be expanded through interagency collaboration.
Agencies and parents identify programmatic needs based on the individual’s assessment information.
Goals and objectives are established in priority areas according to assessment findings, cover the child’s strengths and needs, and include:
The instructional setting and environment are determined by the IFSP, IPP, and/or IEP and are based on a comprehensive assessment that includes evaluation of potential environments and individual needs. Setting options need to be age-appropriate and may include, but are not limited to:
Data collection (measurement of the child’s performance/behavior) format and schedule (e.g., daily, weekly, quarterly, etc.) is agreed upon. The actual number of hours and days are determined based on the assessment and recommendation of an interdisciplinary team. The days and hours are determined by the age, individual goals, and objectives of the child. The number of school days per year is defined by the IEP team.
Curriculum, Instruction,
And Plan Implementation
In California, all pupils, including those with autism, require access to the school district’s core curriculum. Children with autism require disability- specific adaptations and modifications to access the district’s core curriculum. Curriculum modifications, along with age-level expectations and IEP goals and objectives, form the basis for effective program planning. For young children, curriculum and interventions are defined by developmental stages and milestones and are outlined in the IFSP.
Curriculum design and emphasis need to reflect the unique learning styles and abilities of each child.
Curriculum
Access to curriculum is dependent upon the following:
Instructional Design
Instruction (methods, tools, and materials) and environment must be selected, adapted, modified, and varied to allow the child to demonstrate progress according to the standard measures identified by the curriculum and the IFSP and/or the IEP. This will be accomplished through emphasis on the child’s strengths and by ad- dressing the areas that most interfere with learning (e.g., hyper/hypo-sensitivity to sensory processing – tactile, auditory, or visual).
Programs that appear to result in growth in areas such as social engagement, language, coping, and reduction of difficult behaviors have the following characteristics:
An individualized approach is used to select a developmentally appropriate method and level of program. Several intervention methods (such as discrete trial, environmental modifications, naturalistic teacher moments, or inclusion with typically developing peers) are considered in the selection. No single approach is likely to be right for every child. The child is watched to see what interventions work. The curriculum is organized around normal developmental expectations.
The child’s level of development is analyzed in cognitive skills, adaptive behavior, language skills, fine and gross motor skills, and socialization and play domains. Activities are planned at the child’s level. The curriculum is language- and communication-intensive. Socialization and play are actively stimulated. Only functional and meaningful tasks are used. Basic skills are taught before more complex skills. Task analysis techniques are used to be sure the precursors for a task have been mastered. A highly structured and neatly organized, controlled environment is used. A predictable routine with a schedule for each child is provided. Concrete clues, including meaningful visual stimuli to help the child figure out what is expected and to increase independence, are used. Data are recorded to monitor progress and to troubleshoot. A formalized assessment of skills (cognitive, language, socialization, adaptive behavior, fine and gross motor, and play) is conducted at regular intervals. Assessment results are used as a guide for planning what skills to teach next. Data are provided on the success of the interventions employed. Outcomes of children with differing profiles in language and cognition are considered.
Generalization and maintenance of skills are built into the program. Mainstreaming opportunities with typically developing peers are built into the program. Parent training and family support are used. Education about options for intervention is provided. Training is culturally acceptable to individual families. Collaboration of all team members is used. Related services are included (i.e., speech, occupational therapy, adapted physical therapy, and/or augmentative communication). Ongoing teacher/therapist training is included. Consider what new and experienced personnel need to know. Transitional support is provided when the child leaves one program and moves to the next. The skills needed in the next school/program situation are taught and support needed is considered. Integration of research and practice is used. Follow-up of children with ASD as they grow older is conducted to note factors which have contributed to successful or less successful outcomes.
Environment
Environmental influences on individuals with ASD are of great importance. A variety of environmental and situational factors influence the behavior of all chil- dren and adolescents. Because these variables may have even greater significance for students with ASD, a conscious effort must be made to carefully analyze the student and his or her environment as an ongoing component of the instructional process.
The team and teacher should take the following physical environmental considerations into account when implementing the IEP/IFSP:
Plan Implementation
The medical and neurological consequences of ASD prevent these children from learning in the usual way. The difficulty with developing educational/intervention programs for children with ASD results from the multiple symptoms, varied severity, and pervasive nature of the disorder. The key characteristics that must be addressed include, but are not limited to, the following:
In planning appropriate educational and intervention programs that meet the unique needs of students with ASD, it is vital to use information and assessment data from many reliable resources. The assessment will yield current levels of functioning. Although all domains need to be considered, the unique profile of the individual with ASD calls for emphasis in the areas of communication skills, social-emotional, behavioral, and sensory regulation.
Ethical and Professional Considerations
Regional centers, school districts, and other public agencies are responsible for developing and coordinating treatment/educational services for individuals with ASD. Families that receive autism intervention services expect high-quality, professional consideration from the professionals and paraprofessionals serving their children. Parents need to be aware of the conduct and attitude of instructional staff as these could affect their child’s welfare.
The following practices, to be fused with the standing ethical requirements of districts and regional centers, promote professional and ethical conduct by persons providing services to the families of individuals with ASD.
Responsibility for Confidentiality
Staff who come to the parent’s home will have access to confidential information about a child and his/her family. The following principles are vital to the roles of a paraprofessional and a professional:
Parent Relationships
Parents are consumers of the services offered by the regional center and school district; professional and paraprofessional staff must maintain a professional relationship at all times. Professional boundaries must be preserved at all times. Do not discuss personal life with parents. Contact with the child’s family should be limited to the context of the in-home/educational program. Socializing and/or baby-sitting are not professionally appropriate or endorsed by any of the sponsoring agencies. Photographs or videotapes of the child or child’s family for educational purposes may be taken only with the written consent of the parents; Avoid comparing one child’s level of development, progress, or program to that of another child. Always speak with parents in a professional manner. Listen to what the parent has to say regarding the program. Some parents have more extensive experience with behavior management than staff have; even if they do not know technical terms, parents are certainly more familiar with their children.
Always attempt to involve parents in the program as much as possible. If the parent has ideas or questions about the program as a whole or about specific teaching procedures, encourage him or her to ask questions at team meetings or write down questions to discuss at the next higher-level consultation.
Aversive Interventions
Under no circumstances should any form of aversive stimulation be used, even if the parents request its usage. If abuse of any kind is suspected, follow the mandated procedures for reporting abuse [Penal Code 11166, paragraphs (a) and (b)].
Limitations of Instructional Assistants’ Activities
Instructional assistants may be hired by a school district or a regional center to provide one-on-one intervention services to individuals with ASD in the home, school, and/or community. Instructional assistants are not trained, qualified, or legally supervised to be therapists to a parent or family member. The role of "therapist" should be courteously avoided. Parents may ask for advice, or they may wish to discuss their own problems.
Refer matters that suggest the need for therapeutic intervention to the child’s regional center service coordinator, teacher, school psychologist, vendor, or agency providing instructional assistants. Instructional assistant training is limited to implementing teaching procedures (i.e., to conducting behaviorally-based intervention/educational procedures with individuals with ASD). If parents ask about their child’s diagnosis, prognosis, progress, medical status, or other children’s in-home/educational programs, refer those questions to the appropriate source (e.g., pediatrician, psychologist, school psychologist, speech and language specialist).
In the School Setting
The fieldwork or volunteer instructional assistant may have occasion to visit a child’s school. The child’s parent should always be consulted prior to approaching a classroom setting. The parent will obtain permission from the child’s teacher and explain the purpose of the instructional assistant’s activities. Remember that the instructional assistant’s role in a classroom is to assist and support, not to instruct or evaluate, the teacher. It is important to be aware that a classroom situation is entirely different from one-on-one behavior training. The instructional assistant should at all times, respect and follow the teacher’s guidelines, instructions, programs, and routine. If the instructional assistant is in disagreement with school procedure, speak to the appropriate school representative, the parent, or the regional center service coordinator. Under no circumstances should the instructional assistant be a disruptive influence in a classroom.
Attendance
Instructional assistants are expected to be at all scheduled one-on-one teaching sessions and/or meetings (at the child’s home, school, or regional center) and are expected to be on time. If the instructional assistant is going to be late, or anticipates missing a session, he or she must make an effort to inform the parent 24 hours in advance. The instructional assistant should exercise self-discipline. The job comes with a lot of responsibility. The instructional assistant works often with only the child and possibly a parent present.
Data Collection and Analysis
Data collection is the basis for any behavioral intervention. Data ensure objectivity and supply a basis of comparison between procedures and programs. Data also provide accountability in intervention, showing clearly whether or not progress is occurring. There are many procedures, the use of which cannot be justified, with- out clear data-based improvement in the child. Data are also a vital aspect of the early intervention concept as a whole.
Data should be used to evaluate the instructional assistant’s procedures on a day-to-day basis. The instructional assistant is expected to keep clear and careful records of all sessions. It is very important that the instructional assistant be as careful and scientific in data collection as possible.
Limitations of Instructional Assistants’ Training
The training that instructional assistants receive will be valuable and beneficial and it will prepare him or her for more advanced professional supervision, but it does not qualify the instructional assistant legally or professionally as a behavior analyst or behavior therapist. The instructional assistant is not permitted by law to engage in unsupervised private therapy of any type (see Laws and Regulations Relating to the Practice of Psychology, issued by the Board of Psychology).
Training Components
Ensuring that administrators, teachers, parents, direct-service providers, and support staff are prepared with the knowledge and skills necessary to deliver ’services is considered a necessary component in the overall design of an appropriate individualized program. This preparation may include initial and ongoing training and support for staff and families.
Individuals who plan and provide training should disseminate information on training opportunities to parents, professionals, and agencies in the spirit of collaboration.
It is understood that educational staff may have a wide variety of training needs, depending on each individual’s knowledge level of autistic spectrum disorders, as well as each person’s educational and instructional experience. Training needs can be met in a variety of ways, including, but not limited to, professional consultation; demonstration teaching; planned presentations and trainings at in service sessions, workshops, and professional conferences; and attendance at university classes.
Needed Knowledge and Skills
It is recommended that educational/intervention staff working with children who have ASD have the following knowledge and skills to best meet their students’ needs:
Areas and Topics for Training
Training can be tailored to meet the needs of individuals within a service area or special education local plan area (SELPA). Following are selected areas and topics for training:
APPENDIX A
DEFINITIONS OF AUTISM AND AUTISTIC SPECTRUM DISORDERS
The term "autistic spectrum disorders" (ASD) refers to the five diagnostic categories described in the Diagnostic and Statistical Manual of Mental Disorders (4th ed.) (American Psychiatric Association, 1994) under the heading Pervasive Develop- mental Disorders (PDD). These five disorders are:
The term "spectrum," used in the context of ASD, suggests a range of related qualities or activities. The same term, used in reference to the Pervasive Developmental Disorders, captures the notion that PDDs share related characteristics (i.e, that each specific PDD disorder, although different from the other four, shares some similarities).
Autistic spectrum disorders implies a class of related developmental disorders that overlap but are clinically distinct and separately diagnosed. These disorders overlap in the sense that a portion of their clinical features are shared. The boundaries (i.e., the formal diagnostic criteria) that separate the PDDs are widely debated among clinicians and research investigators. It is generally conceded, however, that Autistic Disorder (classical autism) is the prototypical and most severe form of ASD. Most of the time, when parents and professionals are referring to ASD, they are talking about Autism, PDD-NOS, or Asperger’s Disorder. The assumption is that with careful assessment the PDDs can be differentially diagnosed.
Definition of Autism
(Taken from The Advocate, the Autism Society of America’s newsletter.)
Diagnosis of autistic features in children who do not qualify for classical autism has increased during the past decade. The Autism Society of America’s definition of classical autism offers the core features of autism:
"Autism is a severely incapacitating, lifelong, developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects functioning of the brain, autism and its behavioral symptoms occur in approximately fifteen out of every 10,000 births. Autism is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic, and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.
"Some behavioral symptoms of autism include:
"Autism occurs by itself or in association with other disorders that affect the function of the brain, such as viral infections, metabolic disturbances, and epilepsy. It is important to distinguish autism from retardation or mental disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques. The severe form of the syndrome may include extreme self-injurious, repetitive, highly unusual, and aggressive behavior. Special educational programs using behavioral
methods have proved to be the most helpful treatment for persons with autism. Autism is treatable. Early diagnosis and intervention are vital to the future development of the child."
Definition of Autistic Disorder
The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) definition is more specific and is the formal standard for diagnostic assessment. The following information is based on the diagnostic features of Autistic Disorder and the formal criteria for diagnosis presented in the DSM-IV.
299.00 Autistic Disorder
Diagnostic Features
The essential 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 interests. Manifestations of the 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.
The impairment in reciprocal social interaction is gross and sustained. There may be marked impairment in the use of multiple, nonverbal behaviors (e.g., eye-to- eye gaze, facial expression, body postures, and gestures) to regulate social interaction and communication (Criterion A1a). There may be failure to develop peer relation- ships appropriate to developmental level (Criterion A1b) that may take different forms at different ages. Younger individuals may have little or no interest in establishing
friendships. Older individuals may have an interest in friendship but lack understanding of the conventions of social interaction. There may be a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., not showing, bringing, or pointing out objects they find interesting) (Criterion A1c). Lack of social or emotional reciprocity may be present (e.g., not actively participating in simple social play or games, preferring solitary activities, or involving others in
activities only as tools or "mechanical" aids) (Criterion A1d). Often an individual’s awareness of others is markedly impaired. Individuals with this disorder may be oblivious to other children (including siblings), may have no concept of the needs of others, or may not notice another person’s distress.
The impairment in communication is also marked and sustained and affects both verbal and nonverbal skills. There may be delay in, or total lack of, the development of spoken language (Criterion A2a). In individuals who do speak, there may be marked impairment in the ability to initiate or sustain a conversation with others (Criterion A2b) or a stereotyped and repetitive use of language or idiosyncratic language (Criterion A2c). There may also be a lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (Criterion A2d). When speech does develop, the pitch, intonation, rate, rhythm, or stress may be abnormal (e.g., tone of voice may be monotonous or contain question-like rises at ends of statements). Grammatical structures are often immature and include stereotyped and repetitive use of language (e.g., repetition of words or phrases regardless of meaning; repeating jingles or commercials) or metaphorical language (i.e., language that can only be understood clearly by those familiar with the individual’s communication style). A disturbance in the comprehension of language may be evidenced by an inability to understand simple questions, directions, or jokes. Imaginative play is often absent or markedly impaired. These individuals also tend not to engage in the simple imitation games or routines of infancy or early childhood or do so only out of context or in a mechanical way.
Individuals with Autistic Disorder have restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. There may be an encompassing preoccupation with one or more stereotyped and restricted pattern of interest that is abnormal either in intensity or focus (Criterion A3a); an apparently inflexible adherence to specific, nonfunctional routines or rituals (Criterion A3b); stereotyped and repetitive motor mannerisms (Criterion A3c); or a persistent preoccupation with parts of objects (Criterion A3d). Individuals with Autistic Disorder display a markedly restricted range of interests and are often
preoccupied with one narrow interest (e.g, with amassing facts about meteorology or baseball statistics). They may line up an exact number of play things in the same manner over and over again or repetitively mimic the actions of a television actor. They may insist on likeness and show resistance to or distress over trivial changes (e.g., a younger child may have a catastrophic reaction to a minor change in the environment, such as a new set of curtains or a change in place at the dinner table). There is often an interest in nonfunctional routines or rituals or an unreasonable insistence on following routines (e.g., taking exactly the same route to school every day). Stereotyped body movements include using the hands (e.g., clap- ping, finger flicking) or whole body (rocking, dipping, and swaying). Abnormalities of posture (e.g., walking on tiptoe, odd hand movements and body postures) may be present. These individuals show a persistent preoccupation with parts of objects (but- tons, parts of the body). There may also be a fascination with movement (e.g., the spinning wheels of toys, the opening and closing of doors, the
turning of an electric fan or other rapidly revolving object). The person may be highly attached to some inanimate object (e.g., a piece of string or a rubber band). The disturbance must be manifested by delays or abnormal functioning in at least one of the following areas prior to age three years: social interaction, language used in social communication, or symbolic or imaginative play (Criterion B). There is typically no period of unequivocally normal development, although one or two years of relatively normal development has been reported in some instances.
In a minority of cases, parents report regression in language development, generally manifested as the cessation of speech after a child has acquired from five to ten words. By definition, if there is a period of normal development, it cannot extend past age three years. The disturbance must not be better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder (Criterion C).
The DSM-IV provides additional information about autism as it relates to asso- ciated features, age and gender features, prevalence, course, familial pattern, and dif- ferential diagnosis.
Diagnostic Criteria for 299.00 Autistic Disorder
The following are diagnostic criteria for Autistic disorder taken from the DSM-IV:
Criterion A
A total of six (or more) items from sections 1, 2, and 3, with at least two from section 1, and one each from sections 2 and 3:
1.Qualitative impairment in social interaction, as manifested by at least two of the following:
a.Marked impairment in the use of multiple, nonverbal behavior, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
b.Failure to develop peer relationships appropriate to developmental level
c.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)
d.Lack of social or emotional reciprocity
2.Qualitative impairments in communication as manifested by at least one of the following:
a.Delay in, or total lack of, development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication, such as gesture or mime)
b.In individuals with adequate speech, marked impairment in the ability to initiate or sustain a
conversation with others
c.Stereotyped and repetitive use of language or idiosyncratic language
d.Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
a.Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
b.Apparently inflexible adherence to specific, nonfunctional routines or rituals
c.Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping, twisting, or complex whole-body movements)
d.Persistent preoccupation with parts of objects
Criterion B
Delays or abnormal functioning in at least one of the following areas, onset prior to age three years:
1.Social interaction
2.Language as used in social communication
3.Symbolic or imaginative play
Criterion C
The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder. If the criteria for Autistic Disorder are not met and the child has autistic features, the PDD-NOS diagnostic label can be used.
299.80 Pervasive Developmental Disorder, Not Otherwise Specified (Including Atypical Autism)
The following are criteria for PDD-NOS taken from the DSM-IV:
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. The criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal 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 at onset, atypical symptomatology, subthreshold symptomatology, or all of
these.
For the other PDD diagnostic criteria including Asperger’s Disorder, see the DSM-IV.
Definition of Autistic-Like Behaviors from the California Code of Regulations (CCR)
This definition is to be used to determine eligibility for special education and related services rather than for the purpose of diagnosis of autistic spectrum disorder.
CCR § 3030(g): A pupil exhibits any combination of the following autistic-like behaviors, including, but not limited to:
1.An inability to use oral language for appropriate communication.
2.A history of extreme withdrawal or relating to people inappropriately and continued impairment in social interaction from infancy through early childhood.
3.An obsession to maintain sameness.
4.An extreme preoccupation with objects or inappropriate use of objects or both.
5.An extreme resistance to controls.
6.A display of peculiar motoric mannerisms and mobility patterns.
7.A display of self-stimulating, ritualistic behavior.
Federal Definition of Autism
Code of Federal Regulations 1308
1308. 15
A child is classified as having autism when the child has a developmental disability that significantly affects verbal and nonverbal communication and social interaction, that is generally evident before age three, and that adversely affects educational performance.
APPENDIX B
DIAGNOSTIC AND ASSESSMENT INSTRUMENTS APPROPRIATE FOR USE WITH
CHILDREN WITH AUTISTIC SPECTRUM DISORDERS
The following instruments are used by educators, clinicians, and researchers to assess children suspected of, or previously diagnosed with, a pervasive developmental disorder. The instruments were selected for this list because they are used to measure specific dimensions of a child’s development, environment, or family. The instruments listed provide measures of development in different domains of functioning. Rate of change in those domains is sometimes used as a baseline or as a follow-up measure of developmental progress or response to educational programming. Some of the instruments listed below are critically reviewed in Burros’ Mental Measurement Yearbook.
Each instrument’s author is referenced for the convenience of the reader. To obtain the instrument or training in the use of an instrument, refer to the publisher’s - catalogue or author’s comments. For convenience, instruments are categorized under headings, listed alphabetically, that describe part or all of the purpose of the instrument. The following list of assessment instruments represents a sample of instruments most familiar to professionals working with children with autism.
Diagnostic Assessment
Autism Diagnostic Interview - Revised
The Autism Diagnostic Interview-Revised (ADI-R) is a semi-structured, investigator-based interview for caregivers of children and adults for whom autism or pervasive developmental disorders is a possible diagnosis. Two studies (Lord, Rutter, R LeCouteur, 1994; Lord, Storoschuk, Rutter, R Pickles, 1993) were conducted to assess the psychometric properties of the ADI-R. Reliability was tested among 10 autistic (mean age 48.9 months) and 10 mentally handicapped or language-impaired children (mean age 50.1 months), and validity was tested among an additional 15 autistic and 15 nonautistic children. Results
indicated the ADI-R was a reliable and valid instrument for diagnosing autism in preschool children. Inter-rater reliability and internal consistency were good, and inter-class correlations were very high.
A standard diagnostic interview is conducted at home or in a clinic. The ADI-R is considered by some professionals in the field as a measure of high diagnostic accuracy. It takes several hours to administer and score. The ADI-R is recognized as one of the better standardized instruments currently available for establishing a diagnosis of autism. It is a semi-structured interview administered to subjects’ caregivers which determines whether or not an individual meets the Diagnostic and Statistical Manual of Mental Disorders (3rd ed., revised) criteria for autism. The authors of the ADI-R plan to update the scoring procedure so it reflects DSM-IV criteria. The assessment begins with a home visit by a therapist who interviews the child’s parents. A home visit provides a chance to meet the child and to get a sense of the parents’ priorities. This interview may be scheduled as part of the in-clinic assessment (Rutter, Lord, & LeCouteur, 1990).
Prelinguistic Autism Diagnostic Observation Schedule
The Prelinguistic Autism Diagnostic Observation Schedule (PL-ADOS) (DiLavore, Lord, & Rutter, 1995) is a semi-structured observation scale for diagnosing children who are not yet using phrase speech and who are suspected of having autism. The scale is administered to the child with the help of a parent. This instrument provides an opportunity to observe specific aspects of the child’s social behavior, such as joint attention, imitation, and sharing of affect with the examiner and parent. PL-ADOS scores are reported to discriminate between children with autism and children with nonautistic developmental disabilities. The
resulting diagnostic algorithm is theoretically linked to diagnostic constructs associated with International Classification of Diseases (10th revision) and DSM-IV criteria for autism.
Childhood Autism Rating Scale
The Childhood Autism Rating Scale (CARS) was developed by the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) program staff in North Carolina to formalize observations of the child’s behavior throughout the day. This 15-item behavior-rating scale helps to identify children with autism and to distinguish them from developmentally disabled children who are not autistic. Brief, convenient, and suitable for use with any child older than two years of age, the CARS makes it much easier for clinicians and educators to recognize and classify autistic children.
Developed over a 15-year period, with more than 1,500 cases, CARS includes items drawn from five prominent systems for diagnosing autism. Each item covers a particular characteristic, ability, or behavior. After observing the child and examining relevant information from parent reports and other records, the examiner rates the child on each item. Using a seven-point scale, he or she indicates the degree to which the child’s behavior deviates from that of a normal child of the same age. A total score is computed by summing the individual ratings on each of the 15 items. Children who score above a given point are categorized as autistic. In addition, scores falling within the autistic range can be divided into two categories: mild-to-moderate and severe. Professionals who have had only minimal exposure to autism can easily be trained to use CARS. Two training videos showing how to use and score the scale are available from Western Psychological Services (WPS) (Schopler, Reichler, DeVellis, & Daly, 1988; Schopler, Reichler, & Renner, 1986).
Autism Behavior Checklist
The Autism Behavior Checklist (ABC) is a general measure of autism. It is not as reliable as the CARS or ADI-R. Correlations between the ABC and CARS ranged from 0.16 to 0.73 in a study by Eaves and Milner (1993). The CARS correctly identified 98 percent of the autistic subjects; it identified 69 percent of the possibly autistic as autistic. The ABC correctly identified 88 percent of the autistic subjects, while it identified 48 percent of the possibly autistic as autistic. In two separate studies, teachers’ ratings on the ABC failed to reveal a common set of characteristics of students with high functioning Autistic Disorder
(Myles, Simpson, & Johnson, 1995) and Asperger’s Disorder (Ghaziuddin, N., Metler, Ghaziuddin, M., Tsai, & Luke, 1993).
Checklist for Autism in Toddlers
The Checklist for Autism in Toddlers (CHAT) is a screening instrument designed to detect core autistic features to enable treatment as early as eighteen months. The most effective treatment currently available for autism is early educational intervention, beginning as soon as possible after a child’s diagnosis. Unfortunately, intervention rarely begins before the age of three years because few autistic children are diagnosed before they reach preschool age. CHAT offers physicians a means of diagnosing autism in infancy so that educational programs can be started months or even years before most symptoms become
obvious. According to the authors, "We stress that the CHAT should not be used as a diagnostic instrument, but it can alert the primary health professional to the need for an expert... referral."
This first study (Baron-Cohen, Allen, & Gillberg, 1992) using the CHAT re- vealed that key psychological predictors of autism at thirty months are showing two or more of the following at eighteen months: (a) lack of pretend play, (b) lack of protodeclarative pointing, (c) lack of social interest, (d) lack of social play, and (e) lack of joint-attention. The CHAT detected all four cases of autism in a total sample of 91 eighteen-month-old children. The authors recommend that if a child lacks any combination of these key types of behavior on examination at eighteen months, it makes good clinical sense to refer him or her
for a diagnostic assessment by a specialist with expertise in autism.
A second study (Baron-Cohen, Cox, Baird, Swettenham, Nightingale, Morgan, Drew, & Charman, 1996) concluded that "consistent failure of three key items from the CHAT at eighteen months of age carries an 83.3 percent risk of autism, and this pattern of risk indicator is specific to autism when compared to other forms of developmental delay." In the second study, research data on 16,000 children suggested that children who failed three items on the CHAT are at high risk of being autistic. The items include protodeclarative pointing (pointing at an object to direct another person’s attention to it–not to obtain the
item, but simply to share an interest in it); gaze monitoring (turning to look in the same direction as an adult is looking); and pretend play. The false positive rate for detection of autism using the CHAT is estimated at 16.6 percent.
Real Life Rating Scale
The Real Life Rating Scale (RLRS) (Freeman, Ritvo, Yokota, 8z Ritvo, 1986) is a scale used to assess the effects of treatment on 47 behaviors in the motor, social, affective, language, and sensory domains among autistic persons. The RLRS is applicable in natural settings by nonprofessional raters, is rapidly scored by hand, and can be repeated frequently without affecting inter-observer agreement. Data are presented on inter-rater agreement among novice and experienced observers. Instructions for the scale, target behaviors, and definitions are appended to the journal article.
Pervasive Developmental Disorder Screening Test
The Pervasive Developmental Disorder Screening Test (PDDST) (Siegel, 1996) is designed to be administered in settings where concerns about possible autistic spectrum disorders arise. Different "stages" of the PDDST correspond to representative populations in (a) primary care clinics; (b) developmental clinics; and (c) autism clinics. The PDDST is designed as a screening test and is a parent report measure. As such, it does not constitute a full clinical description of early signs of autism but does
reflect those early signs that have been found to be reportable by parents and correlated with later clinical diagnosis.
Stage One
Primary care screening is designed for use in primary care pediatric settings where the vast majority of parents express initial complaints about symptoms that prove to be significant in diagnoses of ASD. The index population is patients who were clinically screened and then referred to an autism specialty clinic (and who eventually received diagnoses of Autistic Disorder, PDD-NOS, or another developmental disorder but with at least a few autistic symptoms; N=379). The control population is high-risk preterm infants (at risk of mild-to-moderate neurological dysfunction; N=198).
Stage Two
Developmental disorders clinic screening is designed for use in developmental clinics where children are often first assessed for possible developmental disorders. The index population is patients with diagnoses of Autistic Disorder or PDD-NOS; N=318. The control population is patients clinically screened as appropriate for an autism evaluation but who eventually received nonautistic spectrum disorder diagnoses, such as mental retardation or developmental language disorders; N=62.
Stage Three
ASD screening is designed for use in specialty clinics for children suspected of ASD. The index population is patients with diagnoses of Autistic Disorder; N=201. The control population is patients with diagnoses of PDD-NOS; N=59.
Autism Screening Instrument for Educational Planning (2nd ed.)
The Autism Screening Instrument for Educational Planning (2nd ed.) (ASIEP- 2) (Krug, Arick, & Almond, 1993) is a major revision of one of the most popular individual assessment instruments available for evaluating and planning for subjects with autistic behavior characteristics. Standardized and researched in diagnostic centers throughout the world, ASIEP-2 uses five components to provide data on five unique aspects of behavior with individuals from eighteen months through adult- hood. The
components of the ASIEP examine behavior in five areas: Sensory, Relating, Body Concept, Language, and Social Self-Help. The ASIEP-2 samples vocal behavior, assesses interactions and communication, and determines learning rate. In combination, ASIEP-2 subtests provide a profile of abilities in spontaneous verbal behavior, social interaction, educational level, and learning characteristics. Revisions to the ASIEP-2 include a new decision matrix, a new norming table section, and simplified administration of the Prognosis of Learning Rate Subtest. The author reports a strong intercorrelation among the ASIEP-2
subtests and the utility of the battery to distinguish among groups of subjects with a variety of disabilities. ASIEP-2 components have been normed individually. Percentiles and standard scores are provided for the five subtests.
Diagnostic Checklist for Behavior-Disturbed Children (Form E-2)
The Form E-2 Diagnostic Checklist (Rimland, 1971), developed at the Institute for Child Behavior Research, was proposed as an assessment instrument that differentiates between cases of "classical" autism and a broader range of children with "autistic-like" features. Questions on Form E-2 reference behaviors in children between birth and age six years. This questionnaire is completed by the child’s parents. The form is intended to be used to identify autism for "biological research." Rimland is clear that Form E-2 is not designed to determine whether or not a child is autistic for the purposes of being admitted
to an educational or rehabilitative program.
Gilliam Autism Rating Scale
Designed for use by teachers, parents, and professionals, the Gilliam Autism Rating Scale (GARS) (Gilliam & Janes, 1995) helps to identify and diagnose autism in individuals ages three through twenty-two years and to estimate the severity of the problem. Items on the GARS are based on the definitions of autism adopted by the DSM-IV. The items are grouped into four subtests: stereotyped behaviors, communication, social interaction, and developmental disturbances. The GARS has three core
subtests that describe specific and measurable behaviors.
An optional subtest (Developmental Disturbances) allows parents to con- tribute data about their child’s development during the first three years of life. Validity and reliability of the instrument are high. Coefficients of reliability (internal consistency, test-retest, and inter-scorer) for the subtests are all in the 0.80s and 0.90s. Behaviors are assessed using objective, frequency-based ratings. The entire scale can be completed in five to ten minutes by persons who have knowledge of the child’s behavior or the greatest opportunity to observe him or her. Standard scores and percentiles are provided.
Developmental Assessment
Psychoeducational Profile-Revised
The Psychoeducational Profile-Revised (PEP-R) (Schopler, Reichler, Bashford, Lansing, & Marcus, 1990) offers a developmental approach to the assessment of children with autism or related developmental disorders. It is an inventory of behaviors and skills designed to identify uneven and idiosyncratic learning patterns. The test is most appropriately used with children functioning at or below the preschool range and within the chronological age range of six months to seven years. The PEP-R provides information on developmental functioning in imitation, perception, fine motor, gross motor, eye-hand integration, cognitive performance, and cognitive verbal areas. The PEP-R also identifies degrees of behavioral abnormality in relating and affect (cooperation and human interest), play and interest in materials, sensory responses, and language.
The PEP-R kit consists of a set of toys and learning materials that are presented to a child within structured play activities. The examiner observes, evaluates, and records the child’s responses during the test. There are 131 developmental and 43 behavioral items on the PEP-R. The total time required to administer and score these items varies From 45 minutes to 1.5 hours. Because it is not a test of speed, variations in total testing time depend on the child’s levels of functioning and any behavior management problems that arise during the testing situation. At the end of the session, the child’s scores are distributed among seven developmental and four behavioral areas. The resulting profiles depict a child’s relative strengths and weaknesses in different areas of development and behavior. The Developmental Scale tells where a child is functioning relative to peers. The items on the Behavioral Scale have the separate, but related, assessment function of identifying responses and behaviors consistent with a diagnosis of autism. The PEP-R provides a third and unique score called emerging. A response scored "emerging" is one that indicates some knowledge of what is required to complete a task, but not the full understanding or
skill necessary to do so successfully.
The Adolescent and Adult Psychoeducational Profile (AAPEP) extends the PEP- R to meet the needs of adolescents and adults.
Southern California Ordinal Scales of Development
The Southern California Ordinal Scales of Development (SCOSD), which is available from Western Psychological Services, was developed by the California Department of Education, Diagnostic Center in Southern California (1985). The developmental scales of cognition, communication, social affective behavior, practical abilities, gross motor, and fine motor abilities are based on two fundamental principles. First, they draw extensively on the developmental theories of Jean Piaget. Each scale is divided according to the levels and stages that Piaget describes in his writings on human development. Second, the SCOSD incorporates assessment techniques that aim to minimize the constraints of traditional, standardized ability testing.
When possible, the examiner is encouraged to observe the child in his or her natural environment, using materials that are readily available and familiar. In interpreting the results of assessment, the examiner arrives at a total picture of the child’s abilities in terms of the particular developmental scale.
The SCOSD is criterion-referenced rather than norm-referenced. Assessment procedures are flexible, rather than fixed, and the scoring system takes into account the quality as well as the quantity of responses.
Developmental Play Assessment Instrument
The Developmental Play Assessment Instrument (Lifter, Sulzer-Azaroff, Ander- son, R Edwards-Cowdery, 1993) is an instrument used to assess the play develop- ment of children with disabilities relative to the play of nondisabled children. The developmental quality of toy play is evaluated according to the level of pretend play and the frequency and variety of play activities within the level identified.
Brigance Inventory of Early Development
The Brigance Inventory (Brigance, 1978) is criterion-referenced rather than norm-referenced. While useful for assessment purposes, its value is in identifying instructional objectives, serving as a guide for measuring those objectives, and providing an ongoing tracking system. The Brigance Inventory is intended for informal assessment of several aspects of child development and is for children functioning at developmental levels from birth to seven years of age. Major areas assessed include general knowledge and comprehension, speech and language, preacademics, self-help, and psychomotor skills. Within these major areas, there are 98 subtests of sequenced developmental skills.
The Brigance Inventory permits different administrations to be used, such as observation, direct testing of the child, or reports from caretakers, child-care workers, or teachers. To elicit the child’s maximum performance, clinicians are encouraged to allow children to respond in any possible fashion, such as pointing, eye localizations, or verbalizing. Clinicians are encouraged to adapt materials to best meet the needs of the child to get a response.
Reliability and validity measures of the Brigance Inventory are limited, as is true of most criterion-referenced instruments. There is no reported reliability or validity data in the manual.
The value of the Brigance Inventory lies in its ability to identify a child’s pattern of strengths and weaknesses in several areas. The items are representative of a curriculum appropriate for an early childhood program and thus are easily linked to instructional planning and intervention (Bagnato, 1985). Another benefit of relating items to teaching and planning is that repeated assessments with the Brigance Inventory can pinpoint areas of gains and losses. The obvious caution here is to avoid teaching to the test since the items are so very specific. (See an article by Gory, 1985, for a review of the Brigance Inventory.)
Adaptive Assessment
Vineland Adaptive Behavior Scales
The Vineland Adaptive Behavior Scales (VABS) (Sparrow, Balla, & Cicchetti, 1984) comes in three forms varying in degree of detail and proposed setting. There is the Survey Form, the Expanded Form, and the Classroom Edition. The VABS is administered by interviewing the child’s parents, teachers, or care providers. The scales range in age from birth to nineteen years. Raw scores from communication, daily living skills, socialization, motor skills, and maladaptive behaviors are converted to standard scores with a mean of 100 and a standard deviation of 15. The Adaptive Behavior composite score includes the
domains noted above and reflects overall adaptive ability.
Questions have been raised about the scales’ standardization and the accuracy of standard scores across the age range. One problem is lack of uniformity of scores across various ages. Depending upon the child’s age, means and standard deviations differ. Thus, comparing the same child’s performance on reassessment is compromised, as is the accuracy of any composite score. Differences among domain scores may be more apparent than real because of variable scores. There is considerable overlap among the various domains with both communication and daily living domains containing questions about the child’s language ability.
Communication Assessment
Sequenced Inventory of Communication Development (Rev. ed.)
The Sequenced Inventory of Communication Development (Rev. ed.) (SICD- R) (Hedrick, Prather, R Tobin 1984) tests a variety of early communication skills, giving a broad perspective of the semantic, syntactic, and pragmatic aspects of a child’s receptive and expressive language. It combines parental report items with behavioral items that incorporate materials and methods to keep children’s attention. The test provides for assignment of communication ages and for determining initial goals in communication programming. (Available from University of Washington Press, Seattle, Wash.)
The Nonspeech Test for Receptive/Expressive Language
The Nonspeech Test (Huer, 1988) is designed to provide a systematic way for observing, recording, and summarizing the variety of means in which an individual may communicate. This tool determines a person’s skills as a communicator, whether speech or nonverbal means are used for communication. It allows for easy development of IEP objectives from the test response forms. (Available from Don Johnston Developmental Equipment, Inc.)
Assessing Semantic Skills Through Everyday Themes
The Assessing Semantic Skills Through Everyday Themes (ASSET) (Barrett, Zachman, & Huisingh, 1988) is a test of receptive and expressive semantics for pre- school and early elementary children. It is built around six common themes, which represent aspects of everyday life that are familiar and important to preschool and early elementary children. Test items emphasize vocabulary that is meaningful and relevant to the experiences of young children. There are five receptive and five expressive subtests, which are designed to elicit responses by questions or directions from the examiner, that refer to the illustrations in the picture stimuli book. Nonverbal performances on receptive vocabulary tasks can be compared to verbal responses on the expressive subtests. This evaluation instrument provides standardized analyses of receptive, expressive, and overall vocabulary abilities. (Available from LinguiSystems, Inc., Moline, Ill.)
Expressive One-Word Picture Vocabulary Test CRev. ed.)
The Expressive One-Word Picture Vocabulary Test (Rev. ed.) (Gardner, 1990) measures the child’s ability to verbally label objects and people. The child must identify, by word, a single object or a group of objects on the basis of a single concept. This is a standardized test that provides age equivalents, standard scores, scaled scores, percentile ranks, and stanines. (Available from Academic Therapy Publications, Novato, Calif.)
Receptive One-Word Picture Vocabulary Test (Rev. ed.)
The Receptive One-Word Picture Vocabulary Test (Rev. ed.) (Gardner, 1990) obtains an estimate of a child’s one-word hearing vocabulary based on what the child has learned from home and school. It provides information about the child’s ability to understand language. This is a standardized test that provides age equivalents, stan- dard scores, scaled scores, percentile ranks, and stanines. (Available from Academic Therapy Publications, Novato, Calif.)
Clinical Evaluation of Language Fundamentals – Preschool
The Clinical Evaluation of Language Fundamentals – Preschool (CELF-P) (Wiig, Secord, R Semel, 1992) is a tool for identifying, diagnosing, and performing follow-up evaluat