Assessment For Identification Page |1 Recognizing Autism Assessment For Identification School personnel along with their parent partners struggle when addressing eligibility for special education services under the categorical label of "autism". This unit will provide structures for conversations and hopefully provide some guidance to school teams. Overview The diagnosis of autism spectrum disorder (ASD) presents a maze of questions that can be perplexing for both parents and educators. When is the right time to seek an assessment? Who should conduct the assessment? What should be included in the assessment? This unit will provide guidelines to help parents and educators to navigate this maze. When is the right time to refer for an assessment? The importance of early identification and treatment of autism spectrum disorders (ASD) has been well established. Parents and educators should seek assessment as soon as signs become evident. Early symptoms of ASD may be apparent by the age of 12 to 18 months or sooner While diagnosis is often possible by the age of 2 (Lord & Spence, 2006), most children are not identified until years later. Indeed, there is typically a delay of two to three years after symptoms first become apparent (Filipek et al., 2000). Because early intervention makes a critical difference in the progress of individuals with ASD, delay in identification is a matter of great concern (Siklos & Kerns, 2007). The American Academy of Pediatrics released a clinical report with guidelines for identification of children with ASD (Johnson, Myers, & Council on Children with Disabilities, 2007). The Assessment For Identification Page |2 guidelines stress the importance of early intervention and contain recommendations to conduct observation for ASDs at every well-child visit and to formally screen at 18 and 24 months or at any point a parent raises concern. When multiple risk factors are present, it is recommended that the physician avoid adopting a "wait-and-see" approach. The report discusses the importance of a team evaluation conducted by specialists in ASDs. What factors contribute to early or delayed identification? Many factors, including symptom severity, race, gender, and attitudes towards diagnosis, contribute to delays in identification. Children with more severe communication deficits tend to be diagnosed at younger ages than are those with primarily pragmatic language (social language) challenges. As a result, the average age of diagnosis of autism is four to five years earlier than the average age of identification for Asperger Syndrome. Special awareness of the relationships between race and gender with early identification is also needed. Research has found that African-American children are identified later and receive alternative diagnoses prior to being identified with an ASD (Mandell, Ittenbach, Levy, & Pinto-Martin, 2006). Further, it is well established that girls are diagnosed at a later age than are boys. Finally, evaluators sometimes hesitate to assign a diagnosis because of fear of the impact of the label or of misdiagnosis. Parents may hesitate to accept the diagnosis for the same reasons. Given the benefits of early intervention, the risk associated with delayed identification is greater, however. "Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism" (Filipek et al., 2000, p. 468). Assessment For Identification Page |3 Who should conduct the assessment? An extensive body of literature is available on the best instruments and techniques for identifying ASD; however, even the best instruments are meaningless when those interpreting them do not have the training and experience to make accurate judgments. Assessment of ASD may be completed by a number of professionals, including psychologists, neurologists, pediatricians, or psychiatrists. Parents and educators should be careful not to make assumptions about the knowledge base of professionals. In each of these fields, there are those who are knowledgeable about ASD assessment and those for whom this is not a strength. It is most important to find specialists who are knowledgeable about and experienced in assessing ASD. The field of the professional is less important than expertise. Case Study: Brad Brad was referred for an evaluation for special education when he was in the first grade. At that time, Brad did not have a medical diagnosis of any autism specrtum disorder (ASD). His parents indicated that they believed that there was always something "different" about him-he was delayed in learning to walk and talk and did not play with his peers. According to his parents, since Brad was 2 years old, his pediatrician had always held that he would "grow out of it" and encouraged them not to worry. Brad's teacher noted that he was having great difficulty completing work and socializing with his classmates. Knowing the importance of early intervention, she encouraged Brad's parents to consent to the referral process. The interdisciplinary team found Brad to be eligible for special education under the category of autism. The assessment team made recommendations for services. In the following months, Brad began to make significant improvement. Assessment For Identification Page |4 How do I avoid common pitfalls? Seeking assessment from an experienced and knowledgeable professional prevents delay in accurate identification and frustration of unanswered questions. Many parents describe experiences of being told that their child is "going through a phase" and that they need to be patient while their child "grows out of it." Other parents report that they have been advised that a single behavior, such as showing affection or using sentences, indicates that their child cannot have an ASD. These same parents may later learn that their child has the diagnosis. Early encounters with professionals who provided false reassurance may sabotage parents' receptiveness to the input of others who recognize the symptoms of ASD exhibited by their child. Alternatively, the error of incorrectly assigning the diagnosis of an ASD carries risks. Working with professionals with expertise in ASD helps to avoid these and other pitfalls. What is the difference between diagnosis and eligibility? Parents and educators should know that the terminology surrounding assessment can be confusing. In particular, the terms medical diagnosis, diagnosis, and eligibility are often misunderstood. While the term medical diagnosis is often used, it is a misnomer. "There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels" (Autism Society of America, n.d.). Wide use of the term has resulted in the false belief that the diagnosis must be made by a medical professional. In fact, in the absence of specific medical concerns, many specialized teams do not require staff with medical training. Assessment For Identification Page |5 The contrast between diagnosis and eligibility is subtle. The term diagnosis is most often used in assessments conducted in the private sector. These include assessments completed at medical facilities, by private neurologists or psychologists, or other private providers. Diagnosis in the United States is most often based on the current edition of the Diagnostic and Statistical Manual (DSM-IV-TR). In this system, the umbrella category of Pervasive Developmental Disorders encompasses Autistic Disorder; Pervasive Developmental Disorders - Not Otherwise Specified, Asperger's Disorder, and others. Assessment in the public school system is conducted for the purposes of establishing eligibility for special education services and gathering information to assist in planning an individualized program for the child. The Individuals with Disabilities Education Act (IDEIA), federal legislation, has defined the eligibility category of "autism" as a disability that affects communication and social interaction. When there is a need for an assessment to determine eligibility for ASD (or any eligibility category), it is the responsibility of the public schools to provide it at no expense to the family. According to IDEIA, ASD may have associated features such as repetitive activities, stereotyped movements, resistance to change, and unusual sensory responses. Students with characteristics of DSM-IV-TR diagnoses, including Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorders, Not Otherwise Specified or other ASD, may qualify under the eligibility category of "autism." They may also qualify for special education services under another eligibility category, based upon their unique characteristics. A disability must have an adverse effect on a student's education in order for him to be considered eligible for special education services, and must require Assessment For Identification Page |6 specially designed instruction. Therefore, a previous diagnosis of ASD in the private sector, does not necessarily result in eligibility for special education services in the school setting. Unfortunately, school teams sometimes fail to consider educational factors beyond academics. As a result, academically capable students with ASD who display deficits in socialization that impact educational progress often are not served. Each eligibility decision is based on a multi-factored evaluation of the individual student. "There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels" (Autism Society of America, n.d.). What should be included in an assessment? Autism spectrum disorders are classified as pervasive developmental disorders. This means that multiple areas of functioning are impacted. Due to the complex nature of ASD, a comprehensive assessment that addresses a range of areas must be conducted by professionals with expertise across several fields. This is best accomplished using an interdisciplinary approach. A comprehensive autism spectrum evaluation should include the child's developmental history, observations, direct interaction, parent interview, and evaluation of functioning in the following areas: social, communication, sensory, emotional, cognitive, and adaptive behavior. At times, additional assessments are indicated. For example, significant motor difficulties or suspicion of seizures require further evaluation. By gathering information across multiple areas, a complete diagnostic picture can be obtained. A thorough assessment helps parents and educators to make more comprehensive treatment decisions. The results of the ASD evaluation should be Assessment For Identification Page |7 summarized in a written report and include specific and meaningful recommendations. The evaluation should be followed by a face-to-face feedback session with the opportunity for parents to ask questions. Top Ten List For Evaluating and Working With A Student With Autism Dr. Ruth Aspy and Dr. Barry Grossman are the authors of the Ziggurat Model, a comprehensive model of intervention. They present nationally and internationally on designing interventions for individuals with autism spectrum disorders. In this webcast, they will discuss their Top 10 tips for working with and evaluating students with autism spectrum disorders. I'm Dr. Barry Grossman. I'm Dr. Ruth Aspy and we're members of the Ziggurat Group and authors of the Ziggurat Model. We've been asked by OCALI to train and prepare interdisciplinary autism assessment teams throughout the state of Ohio. Today we are going to talk to you about our Top 10 List of tips for working with students and evaluating students with ASD. Tip 1: Plan and Prepare. The first tip for assessing a student for autism spectrum disorder is to plan and prepare for the evaluation. Be sure that team members know the referral questions, the concerns of parents and staff. It will guide them in selecting tasks and targeting observations and recommendations. Members of the team should speak with the parents and teachers prior to the evaluation in order to gather information that is vital to the process. It is important to know factors such as: Schedule: What time is the student available to the team? For example, when is lunch? Are there events that would be distressing or significantly disappointing to the student if they were missed? It is also important to know about the student's transition needs. Does the student require a Assessment For Identification Page |8 familiar adult to accompany him or her to the testing room? Is a change in the routine going to be challenging for the student? If so, the student may need to be prepared well in advance of the testing day. Additional reinforcers may need to be established for transitioning and participating in the evaluation. Are there specific objects that they need to have with them such as a block or toy? The team also needs to learn about the level of cognitive functioning. This helps them to select instruments and know how to approach the assessment. The team also needs to inquire about communication skills and modes. Does the student have spoken language? If so, how well developed are his or her skills? Does the student use sign language, pictures or devices to communicate? This information is especially critical when selecting appropriate assessment tools. For example, examiners select different units on the ADOS depending on the student's language functioning. Attention span: Can the student work for an extended period of time? What tips do parents and teachers have to increase time on task? The team needs to know if there are behavioral concerns. Is the student prone to running out of the room or building? Does the student engage in selfinjurious behaviors? Is the student prone to harming others? Sensory needs: Are there adjustments to the environment that would help the student to be more comfortable or successful? For example, lighting and noise level. Are there certain sensations that the student seeks out such as lights and sound? If so, examiners may want to bring special toys or materials to provide these experiences for the student. Based on the answers to these questions, the team is able to schedule the evaluation, select instruments and prepare materials. Tip 2: Communicate and Inform. It is important to provide information to parents and professionals prior to evaluating the student. All parties need to understand the assessments so Assessment For Identification Page |9 that they can facilitate and play an active role in the evaluation. Because the testing environment is critical, it's important to communicate your needs to the building administrator and staff. When a classroom teacher is required to participate on the team, it's important to communicate with the building administrator so that arrangements can be made in advance of the evaluation. Share with parents the purpose of the evaluation, describe activities, provide a timeline and answer all questions. Sometimes parents are misinformed or uninformed about the assessment. This should be resolved prior to initiating the evaluation. This process ensures informed consent. Tip 3: Work as a team. There is a difference between multi-disciplinary and inter-disciplinary. On a multi-disciplinary team, members work apart from one another and merge or assemble their work. When professionals work as an interdisciplinary team, members work collaboratively throughout the process. The interdisciplinary approach results in the strongest diagnostic and programming decisions. All members do not have to be present during each step of the evaluation, such as the parent interview, teacher interview and classroom observation. However, having more than one member present during the evaluation process is the rule rather than the exception. Participation of additional members provides for a richer evaluation and results in better recommendations for the student. Tip 4: Keep and open mind. When conducting an evaluation, do not enter the room with a preconceived notion about whether or not the student has an autism spectrum disorder. It's an error to take the perspective that a student does not have autism until he or she proves otherwise. It's just as erroneous to begin with the assumption that a student has autism until he or she proves otherwise. Instead, start with an open mind. The goal is to learn about the student and his or her functioning. A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 10 Tip 5: Schedule time to process. There's no way to do interdisciplinary team evaluations without setting aside time to meet as a team. This time is what makes the interdisciplinary process work. Members share and compare their observations and score and interpret the test results. If members were to work apart, they would create a compilation of results, not a collaborative integrative report. Tip 6: Think recommendations. Evaluation is a means to more than one end. It's not only for eligibility decision-making. The most important outcome is strong recommendations. Working on recommendations is not something that should be left until the end of the process. Rather, it should be incorporated throughout the assessment. The best recommendations are meaningful, practical, specific and build on the student's strengths. Be sure to address concerns in the home and school setting. Avoid a boilerplate approach. Tip 7: Allow for fun and flexibility. Create an atmosphere that puts the student at ease, one that creates an opportunity for students to display their best communication and social skills. Be flexible. This may mean increasing structure for students who require routine. In contrast, it may mean relaxing structure for students who are able to remain organized during playful interaction. Tip 8: Reinforce. It is important to provide salient reinforcement during the assessment. When gathering information from parents and teachers, find out what is reinforcing to the student. Plan ahead and when possible bring these reinforcers to the evaluation. We once evaluated a student who loved swordplay. One evaluator brought two empty wrapping paper rolls to use as swords. The team allowed the student to select a swordfight partner during each break. For this student, taking breaks to play swords was an essential element to completing the testing. A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 11 Tip 9: Observe across settings. Autism spectrum disorders are behaviorally based. Diagnosis and eligibility is based on observation of symptoms. In order to attain the best picture of the student, it's best to observe in multiple settings. Be sure to observe in different environments and during various activities. Consider the following: Level of structure, time of day, number of people, sensory environment and task demands. Tip 10: Be responsive. There's no formula for the perfect evaluation. Team members should communicate with one another during these sessions and adjust. Team members must be responsive to the student. For example, while evaluating a young student, we noted that he made rhythmic noises. We joined him in creating rhythmic sounds and observed his responses. Evaluators also should be responsive to the student's needs. Pace the evaluation, take breaks, use more reinforcement, and allow for flexibility in seating arrangements. While it may seem supportive to clap or cheer when a student performs well, there are times when students are overwhelmed by such responses. In such cases, a responsive team will adjust and reinforce in a different way. What is the difference between interdisciplinary and multidisciplinary assessment? An interdisciplinary approach to assessment results in the strongest diagnostic and programming decisions. The word interdisciplinary is not interchangeable with the word multidisciplinary. While both approaches involve professionals from various fields, only in interdisciplinary assessment do professionals work in a truly collaborative manner to integrate information for diagnostic and programming decisions. In contrast, in a multidisciplinary approach, results are A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 12 compiled, rather than integrated, and decisions are made with little collaboration across areas of specialty. Participants on interdisciplinary assessment teams should have expertise in their own field as well as in ASD. Assessment teams typically include a speech pathologist and a psychologist. Based on the needs of the individual, additional team members may include a specialist in cognitive assessment, an occupational therapist, a physical therapist, or a medical professional. Federal law mandates that autism spectrum assessments in the schools be conducted by individuals from multiple disciplines. In contrast, there is no such requirement in the private sector. In both the public schools and the private sector, assessments can range in quality (from a diagnosis jotted down on a prescription pad to a thorough interdisciplinary team assessment report). Parents and educators should ask questions about the approach being used. Another area to consider is the scope of the ASD assessment. As stated previously, there is no one factor that should determine whether an individual does or does not have an ASD. Assessments should address all areas of development to truly look at the unique characteristics of ASD. Case Study: Lisa Lisa a fourth grader, was referred for an evaluation in the public school. When the interdisciplinary team met with Lisa's parents, they revealed that Lisa had previously received an extensive multidisciplinary private evaluation that had resulted in the diagnosis of attention-deficit/hyperactivity disorder (ADHD). Review of the previous report by the school team revealed adequate information to suggest that Lisa might meet the eligibility requirements for identification as a student with an autism spectrum disorder (ASD). In response, the school team completed an interdisciplinary assessment that ultimately indicated that Lisa's profile contained strengths and challenges that most resembled that of ASD. The school team subsequently recommended eligibility for special education under the category of autism. The school team considered the possibility that, because the private multidisciplinary team did not integrate the results from the varied professionals involved, their conclusion failed to capture Lisa's total picture. This example highlights the strength of interdisciplinary assessment. A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 13 Summary There are important benefits of early identification and treatment based on accurate and comprehensive assessment. In contrast, incomplete assessment results in a limited understanding of strengths and needs and, in turn, can lead to decrease quality of care due to unidentified needs. Because of the importance of early identification, parents and educators should learn the signs of ASDs and refer for screening and assessment if symptoms are observed. Parents and educators may further advocate for children by seeking a comprehensive, interdisciplinary assessment completed by evaluators who are knowledgeable and experienced in assessing ASDs. A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 14 Quiz Note: Teacher may use the questions as the quiz for this unit. Asking the questions orally and allowing the student to write out their answers. Discussion of each question and its answer after the quiz would be an opportunity to reinforce the correct answers. Defend the following statement: The field of the professional is less important than expertise. The best instruments are meaningless when those interpreting them do not have the training and experience to make accurate judgments. Seeking assessment from an experienced and knowledgeable professional prevents delay in accurate identification and the frustration of unanswered questions. Early encounters with professionals who provided false reassurance may sabotage their receptiveness to the input of others who recognize the symptoms of ASD exhibited by the child. Alternatively, the error of incorrectly assigning the diagnosis of an ASD carries risks. Working with professionals with expertise in ASD helps to avoid these and other pitfalls. A s s e s s m e n t F o r I d e n t i f i c a t i o n P a g e | 15 Citation and References If included in presentations or publications, credit should be given to the authors of this unit. Please use the citation below to reference this content. Aspy, R., & Grossman, B. (2008). Assessment for identification: Online training unit (Plano, TX: The Ziggurat Group). In Ohio Center for Autism and Low Incidence (OCALI), Autism Internet Units, www.autisminternetunits.org. Columbus, OH: OCALI. Assessment for Intervention References Autism Society of America. (n.d.). Diagnosis and consultation. Retrieved July 17, 2007, from http://www.autism-society.org/site/PageServer?pagename=about_whatis_diagnosis Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensory-motor and social behaviors. Journal of Autism and Developmental Disorders, 29, 213-224. Clifford, S., Young, R., & Williamson, P. (2007). Assessing the early characteristics of autistic disorder using video analysis. Journal of Autism and Developmental Disorders, 37, 301-313. Filipek, P. A., et al. (2000). Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55, 468-479. Individuals with Disabilities Education Improvement Act (IDEA) of 2004, PL 108-446, 20 USC 1400 et seq. 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Early recognition of 1-year-old infants with autism spectrum disorder versus mental retardation. Developmental Psychopathology, 14, 239251. Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28, 9-22.