Sunday, January 22, 2012

Autism Litigation Under IDEA


There has been a dramatic worldwide increase in reported cases of autism over the past decade. Autism is much more prevalent than previously thought, especially when viewed as a spectrum of disorders (ASD). According to the CDC, approximately 1 in 110 children in the United States have an autism spectrum disorder (ASD) or an estimated prevalence of about 1%. The occurrence of autism is also evident in the number of students with ASD receiving special educational services. Data collected for the Department of Education indicate that the number of children ages 6 through 21 identified with autism served under the Individuals With Disabilities Act (IDEA) has increased by more than 600 percent, from 42,000 in 1997 to over 250,000 in 2007.
The increase in autism is also reflected in the frequency of autism-related litigation and court decisions. A recent article appearing in the Journal of Special Education Leadership (Autism Litigation Under the IDEA: A New Meaning of “Disproportionality?’) by Lehigh University professor of education and law, Dr. Perry Zirkel, explored whether the litigation concerning students with autism is disproportional to their enrollment in special education programs under IDEA. Zirkel analyzed 201 court decisions under IDEA that appeared in West’s Education Law Reporter. He limited the analysis to the overlapping FAPE (Free Appropriate Public Education) and LRE (Least Restrictive Environment) categories as previous studies showed them to be the major part of IDEA litigation. The FAPE category consisted of decisions where the parent challenged the appropriateness of the child’s individual program or placement. This category also included cases where the court decided the appropriateness of the proposed placement as the first step in the tuition reimbursement analysis. The LRE category consisted of cases where the parents and district sought different placements, and the court used the test, or set of criteria, applicable in its federal appellate jurisdiction for determining the LRE.
The study found that the child’s disability classification was identified as autism in 64 (32%) of 201 FAPE/LRE decisions analyzed between 1993 and 2008. Autism litigation accounted for an average of 37% from 1997 to 2008, ranging from 6% in the period closest to the 1990 addition of autism to the list of IDEA disability classifications to 39% in the most recent four year period 2005-2008. Most importantly, Zirkel found that when comparing the litigation percentage with the autism percentage in the special education population for the period 1993 to 2006, the ratio was approximately 10:1. Overall, the FAPE/LRE court cases are over 10 times more likely to concern a child with autism than the proportion of children with this disability in the special education population.
The study suggests that the reasons for this disproportionality (or overrepresentation) of children with autism in FAPE/LRE litigation are multifaceted. An initial explanation concerns the severity of the disability and the resulting emotional stress placed on parents/caregivers and families. Another explanation may involve “cost.” For example, children with ASD typically receive a significantly higher number of different special education and related services than students with other disabilities. As a result, the average per-pupil expenditure for special education services for school-age children with autism is often more than for other IDEA disability classifications. This relative cost represents high stakes for both parents and districts and may contribute significantly to the motivation for litigation (e.g., the number of tuition reimbursement cases in the FAPE/LRE cases for autism). A third contributing factor may be the recent attention given to autism compared to other IDEA disability classifications together with the complexity of the disorder itself. The media attention given to autism and emergence of advocacy groups have also increased parents’ knowledge, but often popularize treatments that are not supported in the scientific literature and/or viable in educational contexts. As Zirkel comments, “…with the underlying mutual motives of high costs and methodological controversy, it is not surprising that the parents of children with autism would be more prone to litigation than the parents of children with other disabilities.” 
This investigation has several important (and practical) implications. For example, school district administrators should pay particular attention to providing effective evidence-based interventions and programs for children with autism and to establishing effective communications with their parents. Parent-professional communication and collaboration are key components for making educational and treatment decisions. On-going training and education in autism are also important for both parents and professionals. Educators and support professionals who are trained in specific methodology and techniques will be most effective in providing the appropriate services and in modifying curriculum based upon the unique needs of the individual child. Given the limited success of many school districts in addressing this complex disability, school officials must also be prepared to address the expected complaints and grievances from parents of children with autism. At this point, special education leaders should investigate the use of various alternate dispute resolution mechanisms such as mediation and IEP facilitation. As Zirkel concludes, “Although such steps are appropriate with all parents, especially with those of children with disabilities, these results suggest that, without such priority extra efforts, the likelihood of the parents of students with autism filing for an impartial hearing to challenge the IEP and persisting through this costly and cumbersome adversarial process to a court decision will remain disproportionally high.”
Zirkel, P. (2011). Autism litigation under the IDEA: A new meaning of “disproportionality?” Journal of Special Education Leadership, 24, 92-103.
The full text article is available at
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also the editor of a recent volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.

© Lee A. Wilkinson, PhD

Tuesday, January 17, 2012

Autism Assessment: An Interview with Author Dr. Lee A. Wilkinson

Ever wonder why your child received an Autism diagnosis?  Dr. Lee A. Wilkinson, Palm Beach County school psychologist, autism expert, and author discusses his award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Aspergers Syndrome, with autism specialist and educational advocate Andrea Richardson at Thriving with Autism. Don't miss this chance to hear why psychologists ask the questions they do and how they use assessments to determine supports for your kids. 

Listen to the interview on Blogtalk radio.

Dr. Wilkinson is an award winning author.  His work was honored with a gold medal in the 2011 Next Generation Book Awards Education/Academy Category and finalist awards for the 2011 National Association for Special Educational Needs (NASEN) Educational Needs/Academic Book of the Year and 2010 National Best Book Awards. He can be reached at http:bestpracticeautism.com

Sunday, January 15, 2012

Best Practice Review: The Autism Diagnostic Observation Schedule (ADOS)

One of the most widely used observation instruments for the assessment of autism is the Autism Diagnostic Observation Schedule (ADOS) (Lord, Rutter, DiLavore, & Risi, 2008). The ADOS is a semistructured assessment of social interaction, communication, play, and imaginative use of materials for individuals who may have autism or other autism spectrum disorder (ASD), also referred to as pervasive developmental disorder (PDD). The goal of the ADOS is to provide a hierarchy of “presses” (social structures) that elicit behaviors in standardized contexts relevant to ASD.
Use of the ADOS requires clinical training and practice in observation and scoring, as well as administering the standard activities. Clinical experience related to ASD and skill in working with children is recommended. It should be noted that the ADOS classification system does not assign a diagnosis. The ADOS has thresholds for social interaction, communication and communication-social interaction (total). An individual may reach the threshold on all three scales but not receive a clinical diagnosis of ASD, because of late presentation of difficulties or no restricted/repetitive behaviors or interests. The authors stress the importance of using the ADOS in conjunction with a developmental history, corroborating information from other sources, and the use of clinical judgment (Lord et al, 2008).
Administration and Scoring
The ADOS is standardized in terms of the materials used, the activities presented, the examiner’s introduction of activities, the hierarchical sequence of social presses provided by the examiner, and the way behaviors are coded or scored. The ADOS consists of four “modules,” each of which can be administered in 30-45 minutes. The appropriate module is selected and administered depending on the individual’s verbal ability. Module 1 is used for children who are preverbal or have single-word language. Module 2 is appropriate for individuals with phrase speech abilities. Module 3 is used for children and adolescents who are verbally fluent. Verbally fluent adolescents and adults are assessed with Module 4. More than one module can be administered if the examiner determines that a more or less advanced module is appropriate. The manual provides guidelines for selecting the most appropriate module and general instructions for administration and scoring and interpreting an individual’s results.
ADOS classifications are based on specific coded behaviors that are included in a scoring algorithm using the DSM-IV diagnostic criteria, resulting in a Communication score, a Reciprocal Social Interaction score, and a Total score (a sum of the Communication and Reciprocal Social Interactions scores). ADOS items regarding play and stereotyped behaviors are also coded but are not included in the diagnostic algorithm due to the difficulty in accurately assessing these characteristics in a limited period of time (Lord et al., 2008). Behaviors are coded using a 0- to 3-point coding system, with a 0 indicating that the behavior is not abnormal in the way specified in the coding description, 2 indicating a definite difference, and a 3 indicating that a behavior is abnormal and interferes in some way with the child’s functioning. Scores are compared with an algorithm cut-off score for autism or the more broadly defined ASD in each of these areas. If the child’s score meets or exceeds cut-offs in all three areas, they are considered to meet criteria for that classification on the measure. An ADOS autism classification requires meeting or exceeding each of the three thresholds (social, communication, social-communication total) for autism. If thresholds for autism are not met, an ADOS classification of ASD is appropriate when the three ASD thresholds are met or exceeded. In all cases, the ASD thresholds are lower for ASD than those of autism (Lord et al., 2001, 2008).
Psychometric Properties
The psychometric data used in the derivation of the diagnostic algorithms were obtained from individuals diagnosed with autism, pervasive developmental disorder not otherwise specified (PDD-NOS), and non-spectrum disorders in order to maximize diagnostic agreement. Individuals with a diagnosis of Asperger’s Disorder were not included in the validation sample (Lord et al., 2008). The manual provides a range of sensitivity and specificity data across modules for Autism and ASD vs. non-spectrum disorders. The instrument has sensitivity in the upper 90% range and specificity in the upper 80% to lower 90% range (Lord et al., 2008). The ADOS was very effective in discriminating individuals with either autism or ASD from those with non-spectrum disorders, while differentiation of autism and ASD resulted in specificities of .68 to .79. Agreement between raters for diagnostic classification when assessing individuals with autistic disorder, ASD, and non-spectrum disorders ranged from 81% to 93% for the four modules. Internal consistency for all domains and modules ranged from .47 to .94. The lower results were found for stereotyped behaviors and restricted interests in module 3. Test-retest reliability indicates excellent stability for the “Social Interaction” and “Communication” domains, and for their combined total, together with good stability for the “Stereotyped Behaviors and Restricted Interests” over an average period of nine months. In total, there seems to be significant evidence for sensitivity and specificity for the ADOS in differentiating children with autism and ASD from children with non-spectrum disorders (Lord et al., 2001, 2008).
Research
Various studies have examined the effectiveness of ADOS as it is used in clinical practice. For example, Mazefsky and Oswald (2006) examined the diagnostic utility and discriminative ability of the ADOS using a clinical population of 75 children referred to a specialty diagnostic clinic over a 3 year time span. They reported 77% agreement between ADOS classification and team diagnosis, with most discrepancies being in autism versus ASD. The authors note that their results (lower sensitivity) likely reflect the participation of children who present for assessments in common clinical practice. In contrast, the symptom presentation of the children used in the original studies to develop the psychometric properties of the ADOS included “prototypical” representations of the disorders and excluded those with questionable diagnoses. This suggests that clinical expertise and experience with children with ASD is an essential supplement to the ADOS and other assessment instruments for the less “‘clear-cut” cases often seen in typical practice.
A current study also investigated the diagnostic validity of the ADOS in a clinical sample (Molloy, Murray, Akers, Mitchell, & Manning-Courtney, 2011). ADOS classifications were compared to final diagnoses given to 584 children referred for evaluation for a possible ASD in a children’s medical center. Sensitivities were moderate to high on the algorithms, while specificities were substantially lower than reported in the original ADOS validity sample. The authors concluded that the higher number of false positives was likely attributable to the composition of their clinical sample which included many children with a broad range of developmental and behavioral disorders. The results of this study also suggest that clinical populations for which the ADOS is regularly used may be substantially different from the research samples on which it was normed. As a result, it is especially important that the ADOS not be used as a “stand-alone” assessment so as to minimize misclassification in clinical settings where there are children with many other developmental or behavioral disorders.
The role of the ADOS in the assessment of ASD in school and community settings has received attention as well. The perceived advantages and disadvantages of the ADOS were examined via a national survey of practicing school and clinical psychologists (Akshoomoff, Corsello, & Schmidt, 2006). Perceived advantages of the ADOS included its strength in capturing ASD-specific behaviors and the standardized structure provided for observation, while diagnostic discrimination and required resources were the most commonly identified disadvantages. Respondents listing advantages of the ADOS indicated that it captured ASD behaviors, both generally and specifically, and that it was a good measure for identifying behaviors that are difficult to observe or probe in other situations. Respondents indicated that a disadvantage of the ADOS is that it tends to over classify other diagnostic groups as ASD and does not discriminate well within ASD subgroups. Of those that indicated resources as a disadvantage, nearly all indicated time of administration as a disadvantage.
Conclusion
The Autism Diagnostic Observation Schedule (ADOS) is one of the few standardized diagnostic measures that involves scoring direct observations of the child’s interactions and accounts for the developmental level and age of the child. It has the most empirical support among observation-based diagnostic assessment procedures for autism and is recommended in several best practice guidelines as an appropriate standardized diagnostic observation tool (National Research Council, 2001; Wilkinson, 2010). The ADOS offers the practitioner a standardized observation of current social-communicative behavior with excellent interrater reliability, internal consistency and test–retest reliability on the item, domain and classification levels for autism and non-spectrum disorders. Psychometric properties reflect consistent differentiation of autism and ASD from non-spectrum individuals, with less reliable differentiation of autism from ASD (Lord et al., 2001, 2008).
Practitioners should consider the following points when using of the ADOS in clinical and school settings.
1. It is important to distinguish between an ADOS classification and an overall diagnosis of autism. The ADOS is intended to be but “one source” of information used in making a diagnosis of ASD. Because coding is made from a single observation, it does not include information about onset or early developmental history. ADOS algorithms include items coding social behaviors and communication but do not offer an adequate opportunity to measure restricted and repetitive behaviors (though such behaviors are coded if they occur). This means that the ADOS alone cannot be used to make complete standard diagnoses. 
2. The goal of the ADOS is to provide standardized contexts in which to observe the social-communicative behaviors of individuals across the life-span in order to assist in the diagnosis of autism and other ASD. It provides information only on current behavior and was not developed to measure changes over time. Therefore, the ADOS domain or total scores are not a good measure of response to treatment or of developmental gains, especially in the later modules (Lord et al., 2008).
3. The usefulness of the ADOS is related to the examiner’s clinical skills and experience with the instrument. Training and practice in administering the activities, scoring, and observation is required. The ADOS should be administered by an experienced clinician with appropriate training who can use both quantitative and qualitative information to form a clinical impression from the standard activities.
4. Studies suggest that clinical populations for which the ADOS is used may be substantially different from the research samples on which it was normed. As the authors caution, the instrument is not meant to be used as a “stand-alone” assessment. Supporting information from a developmental history, additional observational information or a detailed parent interview are needed for a comprehensive diagnosis. This is especially important in any clinical and school settings where children with various other developmental or behavioral disorders are referred and evaluated.
5. Agreement between clinical diagnostic decisions and standardized diagnostic measures is difficult for children with less typical presentations than classic autism. As a result, diagnostic measures are likely to have difficulty with specificity and sensitivity for children with ASD who do not present with classic features of autism. Further research on the ADOS is needed with children who have an ASD other than autism and with a broader range of children typically seen in clinical and school settings.
References
Akshoomoff, N, Corsello, C., & Schmidt, H. (2006). The role of the Autism Diagnostic Observation Schedule in the assessment of autism spectrum disorders in school and community settings. The California School Psychologist, 11, 7-19.
Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P C, et al. (2000). The Autism Diagnostic Observation Schedule-Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205-223.
Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (2008). Autism Diagnostic Observation Schedule Manual. Los Angeles: Western Psychological Services.
Mazefsky, C.A., & Oswald, D.P. (2006). The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical Setting. Autism, 10, 533–49.
Molloy, C. A., Murray, D. S., Akers, R., Mitchell, T., & Manning-Courtney, P. (2011). Use of the Autism Diagnostic Observation Schedule (ADOS) in a clinical setting. Autism, 15, 143-162.
National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
Wilkinson, L. A. (2010). A best practice guide to assessment and intervention for autism and Asperger syndrome in schools. London: Jessica Kingsley Publishers.

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley PublishersHe is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools, and author of Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).
© Lee A. Wilkinson, PhD

Tuesday, January 3, 2012

Autism Speaks: Top 10 Research Achievements of 2011


Autism Speaks, the world's largest autism science and advocacy organization, has released its annual list of the 10 most significant science achievements to have impacted autism during the previous year. Every year, Autism Speaks documents the progress made toward its mission to discover the causes and treatment for autism spectrum disorders (ASD), and identifies the Top 10 Autism Research Achievements of the year. Autism Speaks’ Top Ten list includes discoveries on how frequently autism recurs in families and the extent to which “environmental,” or non-genetic, influences, increase the risk of autism in those who are genetically predisposed to this developmental disorder. These important results continue to shape the future of autism research for 2012 and beyond.

The 2011 list reflects the exponential rate of discovery in autism research, supported by the joint commitment of government health agencies and private organizations such as Autism Speaks in supporting this vital work. With input from Autism Speaks' Scientific Advisory Committee (SAC), Autism Speaks science staff culled through thousands of publications to arrive at these choices. “These outstanding scientific advances are changing the way we think about autism and its causes,” said SAC member Gary Goldstein, M.D., president and chief executive officer of the Kennedy Krieger Institute.  “From the game-changing twin study to the emerging clues on environmental risk factors, these studies highlight the important role of gene-environmental interactions in autism.” 

“Not only has the research community continued to make significant progress towards effective treatments, 2011 offered some game-changing discoveries that help us understand underlying causes of ASD,” says our Chief Science Officer Geraldine Dawson, Ph.D. “Some of these discoveries will have direct and immediate impact on quality of life of people with autism.”

Read the list at http://www.autismspeaks.org/science/science-news/top-ten-autism-research-achievements-2011

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