High Recurrence Risk for Autism in Siblings

A research study published in the journal Pediatrics suggests that nearly 1 in 5 children who have an older sibling with autism will also develop the disorder at a rate much higher than previously thought. Earlier estimates put the risk at between 3 and 10%, but a new study found a substantially higher risk rate of 18.7%, on average.

Researchers in the U.S., Canada and Israel followed 664 infants from 12 US and Canadian sites who had at least one older brother or sister with an autism spectrum disorder. Overall, 132 infants or approximately 19% received an autism diagnosis by their third birthday.

The highest rates were in infants who had at least two older siblings with autism – 32% also developed the disorder. Boys were nearly three times as likely to develop autism as girls, with a recurrence rate of 26.2% versus 9.1%.

The study’s lead author Sally Ozonoff, a psychiatry and behavioral sciences professor with the Mind Institute at the University of California at Davis, noted that 80% of siblings studied did not develop autism, and that the prevalence rate was an “average.” According to Ozonoff, “It’s important to recognize that these are estimates that are averaged across all of the families. So, for some families, the risk will be greater than 18 per cent, and for other families it would be less than 18 per cent.”  “At the present time, unfortunately, we do not know how to estimate an individual family’s actual risk.”

The study has important implications for both parents and professionals.  Families and primary care professionals should be especially observant with infants whose older siblings have been diagnosed with an autism spectrum disorder. Early identification and intervention are critically important to outcome. Ozonoff and her colleagues comment, “The red flags identified should be followed by immediate referral for infant intervention rather than adopting a 'wait-and-see' attitude because early specialized intervention is considered best practice for ASD and may represent the best hope for reducing symptoms and overall disability in high-risk infants who are developing ASD."

Reference:

Ozonoff S, et al. Recurrence risk for autism spectrum disorders: a baby siblings research consortium study. Pediatrics 2011; DOI: 10.1542/peds.2010-2825.

Legally Appropriate Educational Services for Students with ASD

Since Congress added autism as a disability category to the Individuals with Disabilities Education Act (IDEA) in 1990, the number of students receiving special education services in this category has increased over 900 percent nationally. It’s critically important that educators understand the provisions for providing legally and educationally appropriate programs and services for students identified with ASD.

 Research indicates that education is the most effective treatment/intervention for children with ASD. The most recent reauthorization of the Individuals with Disabilities Education Act (IDEA 2004) <http://idea.ed.gov/explore/home >entitles all students with disabilities to a free, appropriate public education (FAPE). FAPE encompasses both procedural safeguards and the student’s individual education program (IEP). The IEP is the cornerstone for the education of a child with ASD. When a student is determined eligible for special education services, an IEP planning team is formed to develop the IEP and subsequently determine placement.

Although clinical diagnoses, psychiatric reports, and treatment recommendations can be helpful in determining eligibility and educational planning, the provisions of IDEA are the controlling authority with regard to decisions for special education. While clinical information is professionally helpful, it is neither legally required nor sufficient for determining educational placement. Therefore, it’s especially important for administrators, parents, advocates, teachers and non-school professionals to keep in mind that when it comes to special education, it is state and federal education codes and regulations (not clinical criteria) that determine eligibility and IEP planning decisions. Legal and special education experts recommend the following guidelines to help school districts meet the requirements for providing legally and educationally appropriate programs and services to students with ASD.

1. School districts should ensure that the IEP process follows the procedural requirements of IDEA. This includes actively involving parents in the IEP process and adhering to the time frame requirements for assessment and developing and implementing the student’s IEP.  Moreover, parents must be notified of their due process rights. It’s important to recognize that parent-professional communication and collaboration are key components for making educational and program decisions.

2. School districts should make certain that comprehensive, individualized evaluations are completed by school professionals who have knowledge, experience, and expertise in ASD. If qualified personnel are not available, school districts should provide the appropriate training or retain the services of a consultant.

3. School districts should develop IEPs based on the child’s unique pattern of strengths and weaknesses. Goals for a child with ASD commonly include the areas of communication, social behavior, adaptive skills, challenging behavior, and academic and functional skills. The IEP must address appropriate instructional and curricular modifications, together with related services such as counseling, occupational therapy, speech/language therapy, physical therapy and transportation needs. Evidence-based instructional strategies should also be adopted to ensure that the IEP is implemented appropriately.

4. School districts should assure that progress monitoring of students with ASD is completed at specified intervals by an interdisciplinary team of professionals who have a knowledge base and experience in autism. This includes collecting evidence-based data to document progress towards achieving IEP goals and to assess program effectiveness.

5. School districts should make every effort to place students in integrated settings to maximize interaction with non-disabled peers. Inclusion with typically developing students is important for a child with ASD as peers provide the best models for language and social skills. However, inclusive education alone is insufficient, evidence-based intervention and training is also necessary to address specific skill deficits. Although the least restrictive environment (LRE) provision of IDEA requires that efforts be made to educate students with special needs in less restrictive settings, IDEA also recognizes that some students may require a more comprehensive program to provide FAPE. 

6. School districts should provide on-going training and education in ASD for both parents and professionals. 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.

References and further reading:

Individuals with Disabilities Education Improvement Act of 2004. Pub. L. No. 108-446, 108th Congress, 2nd Session. (2004). 

Mandlawitz, M. R. (2002). The impact of the legal system on educational programming for young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 32, 495-508.

National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J. P. McGee (Eds). Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.

Twachtman-Cullen, D., & Twachtman-Reilly, J. (2003). How Well Does Your Child's IEP Measure Up? Quality Indicators for Effective Service Delivery. London: Jessica Kingsley Publishers.

Wilkinson, L. A. (2010). Best practice in special needs education. In L. A. Wilkinson, A best practice guide to assessment and intervention for autism and Asperger syndrome in schools (pp. 127-146). London: Jessica Kingsley Publishers. 

Wrightslaw: Special Education Law, 2ndEdition (2007).

Yell, M. L., Katsiyannis, A, Drasgow, E, & Herbst, M. (2003). Developing legally correct and educationally appropriate programs for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 182-191.

©Lee A. Wilkinson, PhD

Best Practice Book Review: Social Literacy: A Social Skills Seminar for Young Adults with ASDs, NLDs, and Social Anxiety

Although there has been a significant increase in research and clinical studies related to children and with autism spectrum disorders (ASD), we have only recently begun to appreciate the complex challenges faced by adults who were not identified in childhood and are presently an underserved population. Social Literacy: A Social Skills Seminar for Young Adults with ASDs, NLDs, and Social Anxiety  by Mary Riggs Cohen is a book and CD set that provide an evidence-based social skills curriculum for more capable young adults with social learning needs and life transition issues (e.g., college, work, interpersonal relationships). 

The Social Skills Seminar incorporates the basic principles of cognitive behavioral therapy (CBT) with the overarching goal of developing social and communicative competency through direct teaching, modeling, coaching, role-playing, and practice activities. The book covers the background and structure for conducting a social skills training course over a 12-week period, meeting once each week for 3-hour class sessions. Beginning with an introduction, the author takes the reader through a discussion of the neurobiology of social learning disorders and the theoretical foundations of program design. Subsequent chapters include the selection, training, and use of social coaches, understanding of nonverbal communication, improving conversational skills, interpersonal relationships and dating, and employment issues and interviewing skills. A template is provided for each class and includes objectives, exercises, and applicable handouts. The final chapters describe efficacy studies of social skills training and practical applications. Perhaps the most impressive feature of the seminar is the use of social coaches to enhance generalization to real world situations by engaging participants in experiential opportunities. Each participant is assigned an individual coach who provides feedback and support during the 12-week course. Chapter 3 of the book provides a description of the social coach selection process, a critical step that takes place prior to initiation of the program with participants.

The accompanying CD-ROM contains PowerPoint slides that provide a sequential format to the instructional portion of the class. Photocopiable handouts used in the class lessons are also included. As noted in the text, social coaches are an integral part of the seminar. Slides for preparing social coaches are included on the CD and provide essential training on social learning disorders, outcome measures, curriculum topics, and coaching activities. 

At present, there is a paucity of information about the educational and employment outcomes for more capable adults on the autism spectrum. This includes those in the general population who do not meet the threshold for a diagnosis but whose social problems impact their personal and social lives. However, it is clear that outcome depends to a large degree on the level and appropriateness of support provided to the individual. Social Literacy is the most comprehensive and evidence-based framework currently available for planning and executing a meaningful and effective social skills training program for young adults with social learning challenges. The program is designed to be flexible and can be adapted and modified to accommodate the specific needs of the participants. The publication of Social Literacy also provides an opportunity for researchers to investigate the effectiveness of social skills training in adult populations. I highly recommend this social learning course to professionals in private practice, secondary schools, colleges and universities, and community settings who work with young adults to help them navigate the social environment and achieve a successful transition to this stage of life.

Cohen, Mary Riggs (2011). Social literacy: A social skills seminar for young adults with ASDs, NLDs, and social anxiety. Baltimore, MD: Paul H. Brookes Publishing Co.

©lee A. Wilkinson

Best Practice Book Review: Pivotal response treatments for autism: Communication, social, and academic development.

This comprehensive text describes intervention strategies and outcome data related to Pivotal Response Treatments (PRT) for autism. The PRT approach focuses on normalizing child development for children with autism via a delivery model that uses both a developmental approach and applied behavior analysis (ABA). It has demonstrated empirical support in the literature. The chapters are well written and cover a range of topics related to interventions in the general education classroom, parent education programs, communication, social development, and strategies for addressing disruptive behavior. Case examples are also included. The chapter on combining functional assessment and self-management procedures to reduce disruptive behavior should appeal to school-based professionals such as school psychologists, special educators, and other support personnel. Overall, the text succeeds in describing an integrated and comprehensive approach to the treatment of autism. Those without experience or background in autism related research and practice might find some portions of the text to be a challenging read.

Koegel, R. L., & Koegel, L. K. (2006). Pivotal response treatments for autism: Communication, social, and academic development. Baltimore, MD: Paul H. Brookes Publishing.

Seizure Treatments for Children with Autism

Although the association between autism and seizure disorder is not as yet firmly established, there appears to be a higher incidence of febrile seizures in children with autism compared to the general population. Although a majority of children will have only one febrile seizure in their lifetime, many children will progress to 'status epilepticus' (epilepsy). In fact, 15-20% of children with epilepsy have a history of a previous febrile seizure. Approximately 25 to 35 percent of people with autism will eventually experience full-scale seizures. Many others will have seizure-like brain activity, in which there is no obvious effect on muscles but potential effects on brain functioning, such as temporary loss of attention.

Until recently, little has been known about which traditional treatments for epileptic seizures and commonly used non-traditional alternative treatments are most effective for treating seizures or epilepsy specifically in children and adults with autism. A study provides insight into which treatments are most beneficial in such cases. James Adams, a professor at Arizona State University conducted the research, together with Richard E. Frye, a physician specializing in child and behavioral neurology in the Department of Pediatrics at University of Texas-Houston. The complete study is published in the medical journal BMC Pediatrics.

The researchers surveyed 733 parents whose children with autism experience seizures, epilepsy and/or seizure-like brain activity. They asked parents to rate the effectiveness of 25 traditional and 20 non-traditional medical treatments for seizures. The survey also assessed the effects and side-effects of those treatments. Overall, antiepileptic drugs were reported by parents to reduce the occurrence and severity of seizures but worsened problems with sleep, communication, behavior, attention and mood. Non-antiepileptic drugs were perceived to improve other symptoms but did not reduce occurrence of seizures or make them less severe to the same extent as the anti-epileptic drugs. Four anti-epileptic drugs: valproic acid, lamotrigine, levetiracetam and ethosuximide were reported to most often reduce the number or lessen the severity of seizures, with little positive or negative effect on other symptoms of autism. Certain traditional non-anti-epileptic drug treatments, particularly the ketogenic diet, were perceived to both lessen the number and reduce the severity of seizures and other symptoms. The results of this study should provide physicians with a guide for more effectively managing the treatment of children experiencing seizures related to autism. 

Article URL: http://www.medicalnewstoday.com/releases/227355.php 

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 editor of a new Volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.

© Lee A. Wilkinson, PhD

Best Practice Review: The Social Responsiveness Scale (SRS)

The Social Responsiveness Scale (SRS; Constantino & Gruber, 2005) is a brief quantitative measure of autistic behaviors in 4 to 18 year old children and youth. This 65-item rating scale was designed to be completed by an adult (teacher and/or parent) who is familiar with the child’s current behavior and developmental history. The SRS can be completed in approximately 15 minutes and focuses on the child’s reciprocal social interactions, a core impairment in all pervasive developmental disorders. Standardization is based on a sample of 1,636 children drawn from the general population.

 The SRS items measure the ASD symptoms in the domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behavior/restricted interests. Each item is scored from 1 (not true) to 4 (almost always true).  Scores are obtained for five treatment subscales: Social Awareness (e.g., “Is aware of what others are thinking or feeling”), Social Cognition (e.g., Doesn’t recognize when others are trying to take advantage of him or her”), Social Communication (e.g., Avoids eye contact or has unusual eye contact”), Social Motivation (e.g., “Would rather be alone than with others”), and Autistic Mannerisms (e.g., Has an unusually narrow range of interests”). 

Interpretation is based on a single score reflecting the sum of responses to all 65 SRS questions. Raw scores are converted to T-scores (with mean of 50 and standard deviation of 10) for gender and rater type. A total T-score of 76 or higher is considered severe and strongly associated with a clinical diagnosis of autistic disorder. A T-score of 60 through 75 is interpreted as falling in the mild to moderate range and considered typical for children with mild or “high functioning” ASD, while a T-score of 59 or less suggests an absence of ASD symptoms. A total raw score of > 75 was associated with a sensitivity value of .85 and specificity value of .75 for ASD (Autistic Disorder, Asperger’s Disorder, or PDD-NOS). The AUC was .85 for recommended screening and clinical cutoff scores and indicates good overall discrimination. In school settings, raw scores at or above 85 from two separate informants provides very strong evidence of ASD.  More impressive values have been noted when using lower parent or teacher scores. For example, T-scores of  > 60 from both parent and teacher have been shown to result in a  96.8% likelihood of a clinically identified ASD diagnosis (Constantino et al., 2003, 2007).

The SRS is an efficient tool for capturing the more subtle aspects of social impairment associated with ASD (e.g., PDD-NOS) and reflects the level of severity across the autism spectrum. The scale demonstrates strong reliability across informants, acceptable internal consistency, and correlates highly with the Autism Diagnostic Interview-Revised (ADI-R). Brief, quantitative, and based on naturalistic observations of parents and teachers, the SRS can be used as an effective screener in clinical or educational settings, an aid to clinical diagnosis, or a measure of response to intervention (Wilkinson, 2010, 2011). The SRS compares favorably to more time-intensive measures and can help school and clinical psychologists identify the type of social impairment characteristic of autism spectrum disorders (ASD) in children as young as 4 years of age and guide development of intervention/treatment programs. Of course, the results of questionnaire measures should not replace clinical assessment and must be integrated with information from different sources. The SRS should be used within the context of a comprehensive evaluation, including developmental history and assessment of intellectual, language, and adaptive behavior functioning (Wilkinson, 2010). Further research is needed to assess how the SRS performs when differentiating children with ASD from other childhood disorders (e.g., ADHD) and those with intellectual disability.

References:

Chandler, S., Charman, T., Baird, G., Simonoff, E., Loucas, T., Meldrum, D., & Pickles, A. (2007). Validation of the Social Communication Questionnaire in a population cohort of children with autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 1324–1332.

Constantino et al. (2003).  Validation of a brief measure of autistic traits: Comparison of the social responsiveness scale with the autism diagnostic interview-revised. Journal of Autism and Developmental Disorders, 33, 427-433.

Constantino, J. N., & Gruber, C. P. (2005). Social Responsiveness Scale. Los Angeles: Western Psychological Services.

Constantino et al. (2007). Rapid quantitative assessment of autistic social impairment by classroom teachers. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 1668-1676.

Mash, E. J., & Hunsley, J. (2005). Evidence-based assessment of child and adolescent disorders: Issues and challenges. Journal of Clinical Child and Adolescent Psychology, 34, 362-379.

Norris, M., & Lecavalier, L. (2010). Screening accuracy of level 2 autism spectrum disorder rating scales: A review of selected instruments. Autism, 14, 263–284.

Wilkinson, L. A. (2010). A best practice guide to assessment and intervention for autism and Asperger syndrome in schools. London: Jessica Kingsley Publishers.

Wilkinson, L. A. (2011). Identifying students with autism spectrum disorders: A review of selected screening tools. Communiqué, 40, pp. 1, 31-33.

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 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 book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His most recent book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools, (2nd Edition)

© Lee A. Wilkinson, PhD