Saturday, October 31, 2015

Group Pivotal Response Treatment (PRT) for Parents of Children with Autism

Group Pivotal Response Treatment (PRT) for Parents

More children than ever before are being diagnosed with autism spectrum disorder (ASD). The dramatic increase in the prevalence of children with ASD has created an urgent need for effective and efficient service delivery models. Parents and caregivers everywhere are eager for credible, research-based information on the most effective treatments for ASD. Utilizing a group training format, researchers have found that parents can learn to successfully incorporate an established treatment for ASD into everyday interactions with their children. According to findings published in the Journal of Child Psychology and Psychiatry, parents learned to successfully apply an evidence-based therapy method called Pivotal Response Treatment (PRT), also referred to as Pivotal Response Training, and observed meaningful improvement in their children.

PRT is one of the best studied and validated behavioral treatments for autism. It is a naturalistic behavioral intervention derived from the principles of Applied Behavior Analysis (ABA). PRT builds on learner initiative and interests, and is particularly effective for developing communication, language, play, and social behaviors. PRT was developed to create a more efficient and effective intervention by enhancing four pivotal learning variables: motivation, responding to multiple cues, self-management, and self-initiations. According to theory, these skills are pivotal because they are the foundational skills upon which learners with ASD can make widespread and generalized improvements in many other areas.

The objective of the study was to evaluate a PRT parent training group (PRTG) for targeting language deficits in young children with ASD. For the study, researchers randomly assigned parents of 53 children with autism to participate in 12 weeks of classes on PRT or a psychoeducation group (PEG). All of the children were between the ages of 2 and 6 and had language delays. The PRTG taught parents behavioral techniques to facilitate language development. The PEG taught general information about ASD. All of the children were assessed at the outset of the study, at six weeks and at 12 weeks to determine their language abilities. Parents were also videotaped at six and 12 weeks to measure how well they were applying the treatment.

The results indicated that parents were able to learn PRT in a group format, as the majority of parents in the PRTG (84%) were using it correctly by the end of the study. Children also demonstrated improvement in adaptive communication skills. Children whose parents learned the technique reported greater gains in both the number of words used and how they used them as compared to children in the psychoeducation (control) group.

This study is considered the first randomized controlled test of group-delivered PRT and one of the largest experimental investigations of the PRT model to date. The findings suggest that specific instruction in PRT results in greater skill acquisition for both parents and children, especially in functional and adaptive communication skills. Even with the improvements, researchers said that parent-implemented approaches are intended to augment, not replace, autism therapies from professionals. Likewise, further research in PRT is warranted to replicate the observed results and address other core ASD symptoms. It should also be noted that research findings are not the only factor involved when selecting an intervention. Professional judgment and the values and preferences of parents, caregivers, and the individual are also important.

Hardan, A. Y., Gengoux, G. W., Berquist, K. L., Libove, R. A., Ardel, C. M., Phillips, J., Frazier, T. W. and Minjarez, M. B. (2014), A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Psychiatry. doi: 10.1111/jcpp.12354

Tuesday, October 27, 2015

Sibling Study Reveals Early Signs of Autism


                                                                                                                                                                            Younger siblings of children with autism spectrum disorder (ASD) are at high risk for developing ASD as well as features of the broader autism phenotype. About 20% of younger siblings of children with Autism Spectrum Disorder (ASD) will develop the condition by age 3. A study by Yale School of Medicine researchers has found that 57% of these younger siblings who later develop the condition already showed warning signs like poor eye contact and repetitive behaviors at just a year and a half old. Published in the Journal of the American Academy of Child & Adolescent Psychiatry, this is the first large-scale, multi-site study aimed at identifying specific social-communicative behaviors that distinguish infants with ASD from their typically and atypically developing high-risk peers as early as 18 months of age. For the study, researchers looked at data on 719 infants who had older siblings on the spectrum. The children were assessed at 18 months and again at 36 months to identify social, communication and repetitive behaviors that could be predictive of autism.

Three distinct combinations of features at 18 months were predictive of ASD outcome: 1) poor eye contact combined with lack of communicative gestures and giving; 2) poor eye contact combined with a lack of imaginative play; and 3) lack of giving and presence of repetitive behaviors, but with intact eye contact. These 18-month behavioral profiles predicted ASD versus non-ASD status at 36 months with 82.7% accuracy in an initial test sample and 77.3% accuracy in a validation sample. Clinical features at age 3 among children with ASD varied as a function of their 18-month symptom profiles. Children with ASD who were misclassified at 18 months were higher functioning, and their autism symptoms increased between 18 and 36 months.

"While the majority of siblings of children with ASD will not develop the condition themselves, for those who do, one of the key priorities is finding more effective ways of identifying and treating them as early as possible," said lead author Katarzyna Chawarska, associate professor in the Yale Child Study Center and the Department of Pediatrics at Yale School of Medicine. "Our study reinforces the need for repeated diagnostic screening in the first three years of life to identify individual cases of ASD as soon as behavioral symptoms are apparent." Early detection, especially when toddlers have siblings with autism, is critical. Chawarska added, "Linking these developmental dynamics with underlying neurobiology may advance our understanding of causes of ASD and further efforts to personalize treatment for ASD by tailoring it to specific clinical profiles and their developmental dynamics."

Other authors of the study included: Suzanne Macari, Frederick Shic, Daniel J. Campbell, Jessica Brian, Rebecca Landa, Ted Hutman, Charles A. Nelson, Sally Ozonoff, Helen Tager-Flusberg, Gregory S. Young, Lonnie Zwaigenbaum, Ira L. Cohen, Tony Charman, Daniel S. Messinger, Ami Klin, Scott Johnson, and Susan Bryson.

“18-Month Predictors of Later Outcomes in Younger Siblings of Children With Autism Spectrum Disorder: A Baby Siblings Research Consortium Study.” Published online 06 October 2014. Journal of the American Academy of Child & Adolescent Psychiatry.

Citation: JACC doi: 10.1016/j.jaac.2014.09.015


Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Tuesday, August 25, 2015

Autism Resource for Families

A Parent's Guide to Evidence-Based Practice and Autism

Autism is a disorder with no known cause or cure. Parents of children with ASD will understandably pursue interventions and treatments that offer the possibility of helping their child, particularly if they are perceived as unlikely to have any adverse effects. Unfortunately, families are often exposed to unsubstantiated, pseudoscientific theories, and related clinical practices that are ineffective and compete with validated treatments, or that have the potential to result in physical, emotional, or financial harm. The time, effort, and financial resources spent on ineffective treatments can create an additional burden on families. As a result, parents and caregivers everywhere are eager for credible, research-based information on the most effective treatments for autism spectrum disorders (ASD). To address this need, the National Autism Center has published the manual, A Parent's Guide to Evidence-Based Practice and Autism, to help parents and caregivers differentiate empirically validated treatment approaches from treatments that are unproven and/or potentially ineffective.
The 134-page manual focuses on helping parents as they make decisions about how to best help children with ASD reach their full potential. It begins with a review of the autism spectrum, symptoms, and co-occurring conditions, and identifies and describes effective treatments. Other topics include the importance of professional judgment, the role of family preferences and values in the decision-making process, and factors to consider when choosing a team of professionals to help their child.
“Finding information about autism is easy. It is much more difficult to find reliable information that has withstood the rigors of science, is comprehensive in scope, and is accessible and easy to read,” said Hanna C. Rue, Ph.D., BCBA-D, Director of Evidence-based Practice for the National Autism Center and one of the manual’s authors. “Even for a trained professional, sorting through the clutter to find information that is most relevant to a child’s needs is a complicated and challenging process.”
One of the most distinctive and important features of this manual is that it was co-authored by professionals and parents of children with autism. “As professionals, we think about treatment from an entirely different perspective than a parent,” Dr. Rue comments. “We felt it was critical that the parent experience be reflected in every aspect of the manual.”
The manual is the latest in a series of publications by the National Autism Center. Visit the Center’s website to download a free copy, watch a video, or learn more.
About the National Autism Center
The National Autism Center is May Institute’s Center for the Promotion of Evidence-based Practice. It is dedicated to serving children and adolescents with Autism Spectrum Disorders (ASD) by providing reliable information, promoting best practices, and offering comprehensive resources for families, practitioners, and communities.
An advocate for evidence-based treatment approaches, the National Autism Center identifies effective programming and shares practical information with families about how to respond to the challenges they face. The Center also conducts applied research and develops training and service models for practitioners. Finally, the Center works to shape public policy concerning ASD and its treatment through the development and dissemination of National Standards of Practice.
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, chartered psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorder. Dr. Wilkinson is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe 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. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Wednesday, August 19, 2015

Autism and the Transition to Adulthood

Autism and the Transition to Adulthood

Young adults with autism are facing significant challenges as they transition to adulthood, a national report suggests, with many on the spectrum finding themselves unemployed, isolated, and lacking services. The "National Autism Indicators Report: Transition into Young Adulthood" from Drexel University’s A.J. Drexel Autism Institute is a comprehensive report (available free online) that presents new findings about a wide range of experiences and outcomes of youth on the autism spectrum between high school and their early 20s. The report is a collection of indicators that focuses national attention on outcomes which are almost universally lower for those on the autism spectrum compared to their peers with other types of disabilities and serves as a call to action to fill the remaining large gaps in knowledge. Key findings include:
  • Over one-third (37 percent) of young adults were disconnected during their early 20s, meaning they never got a job or continued education after high school. In comparison, less than eight percent of young adults with other types of disabilities were disconnected.
  • Approximately 26 percent of young adults and 28 percent of those unemployed and not in school received no services which could help them with employment, continue their education, or live more independently.
  • Just 58 percent of young adults worked for pay outside the home between high school and their early 20s, a rate far lower than young adults with other types of disabilities. Those with jobs generally worked part-time for relatively low wages.
  • Approximately one in four young adults were socially isolated, meaning they never saw or talked with friends and were never invited to social activities within the past year.
  • Only about one in five ended up living independently (without parental supervision) in the period between high school and their early 20s.
  • Sixty percent of youth had at least two health or mental health conditions in addition to autism spectrum disorder. Over half of youth had co-occurring ADD/ADHD and anxiety issues in adolescence. Three-quarters of youth took at least one kind of medication on a regular basis for any health or mental health issue.
  • Nearly 50% of youth experienced threats and bullying during high school. Over one-quarter (27 percent) of adolescents engaged in some type of wandering behavior in which they impulsively left a supervised situation, increasing their risk of becoming lost and going missing.
  • Transition Planning, a key process for helping youth build skills and access services as they enter adulthood, was frequently delayed. Just 58 percent of youth had a transition plan by the federally required age.

The creation of effective and affordable programming tailored to meet the needs of the 50,000 individuals with autism who leave high school each year - each with unique strengths, interests, and challenges - is an urgent task facing our society. It is clear that we are not succeeding as a nation in helping autistic adults to thrive to the best of their abilities and attain a high quality of life. It is time for new approaches.
“This is the most comprehensive report to date describing what we know about young adults with autism as a whole and across the various parts of their lives. Yet, it represents only a fraction of what we need to know. Huge gaps remain,” said Anne M. Roux, MPH, research scientist at the A.J. Drexel Autism Institute in the Life Course Outcomes Research Program and lead author of the report. Although these indicators don’t tell us why outcomes are worse for those with autism compared to youth with other disabilities, this report is an important first step toward addressing the gaps in what we know, as we work to build an evidence base about how to help achieve better outcomes.
The link to the report download page is http://drexe.lu/autismindicators.
Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.
Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Monday, August 10, 2015

Asperger Syndrome Revisited


Asperger Syndrome Revisited

The removal of Asperger’s disorder (Asperger syndrome) as a separate diagnostic category from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) has been widely publicized. The new DSM-5 category of autism spectrum disorder (ASD), which subsumes the previous DSM-IV diagnoses of autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorderand pervasive developmental disorder not otherwise specified (PDD-NOS), reflects the scientific consensus that symptoms of the various DSM-IV subgroups represent a single continuum of impairment that varies in level of severity and need for support.
An important feature of the DSM-5 criteria for ASD is a change from three symptom domains (triad) of social impairment, communication deficits and repetitive/restricted behaviors, interests, or activities to two domains (dyad); social/communication deficits and fixated and repetitive pattern of behaviors. Several social/communication criteria were merged to clarify diagnostic requirements and reflect research indicating that language deficits are neither universal in ASD, nor should they be considered as a defining feature of the diagnosis. The criteria also feature dimensions of severity that include current levels of language and intellectual functioning as well as greater flexibility in the criteria for age of onset and addition of symptoms not previously included in the DSM-IV such as sensory interests and aversions.
DSM-IV Criteria in Practice
Problems in applying the DSM-IV criteria were a key consideration in the decision to delete Asperger’s disorder as a separate diagnostic entity. Numerous studies indicate that it is difficult to reliably distinguish between Asperger syndrome, autism, and other disorders on the spectrum in clinical practice (Attwood, 2006; Macintosh & Dissanayake, 2006; Leekam, Libby, Wing, Gould & Gillberg, 2000; Mayes & Calhoun, 2003; Mayes, Calhoun, & Crites, 2001; Miller & Ozonoff, 2000; Ozonoff, Dawson, & McPartland, 2002; Witwer & Lecavalier, 2008). For example, children with autism who develop proficient language have very similar trajectories and later outcomes as children with Asperger disorder (Bennett et al., 2008; Howlin, 2003; Szatmari et al., 2000) and the two are indistinguishable by school-age (Macintosh & Dissanayake, 2004), adolescence (Eisenmajer, Prior, Leekam, Wing, Ong, Gould & Welham 1998; Ozonoff, South and Miller 2000) and adulthood (Howlin, 2003). Individuals with Asperger disorder also typically meet the DSM-IV communication criterion of autism, “marked impairment in the ability to initiate or sustain a conversation with others,” making it is possible for someone who meets the criteria for Asperger’s disorder to also meet the criteria for autistic disorder.
Treatment and Outcome
Another important consideration was response to treatment. Intervention research cannot predict, at the present time, which particular intervention approach works best with which individual. Likewise, data is not available on the differential responsiveness of children with Asperger’s disorder and high-functioning autism to specific interventions (Carpenter, Soorya, & Halpern, 2009). There are no empirical studies demonstrating the need for different treatments or different responses to the same treatment, and in clinical practice the same interventions are typically offered for both autism and Asperger’s disorder (Wilkinson, 2010). Treatments for impairments in pragmatic (social) language and social skills are the same for both groups.
Application of DSM-5 Criteria
It’s important to remember that in the DSM, a mental disorder is conceptualized as a clinically important collection of behavioral and psychological symptoms that causes an individual distress, disability or impairment. The objective of the DSM-5 criteria for ASD is that every individual who has significant “impairment” in social interaction and communication, and restricted and repetitive behavior or interests should meet the diagnostic criteria for ASD. Because language impairment/delay is not a necessary criterion for diagnosis, anyone who demonstrates severe and sustained impairments in social skills and restricted, repetitive patterns of behavior, interests, or activities in the presence of generally age-appropriate language acquisition and cognitive functioning, who might previously have been given a diagnosis of Asperger’s disorder, now meet the criteria for ASD. Specifiers are used to indicate level of severity and "without accompanying intellectual impairment and language impairment."
The DSM-5 criteria for ASD have created significant controversy over concerns that it would exclude many individuals currently diagnosed with Asperger syndrome and PDD-NOS, and thus make it difficult for them to access services. However, recently published field trials suggest that the revisions actually increase the reliability of diagnosis, while identifying the large majority of those who would have been diagnosed under the DSM-IV-TR. Of the small numbers who were not included, most received the new diagnosis of “social communication disorder.” Moreover, the accuracy of non-spectrum classification (specificity) made by DSM-5 was better than that of DSM-IV, indicating greater effectiveness in distinguishing ASD from non-spectrum disorders such as language disorders, intellectual disability, attention-deficit/hyperactivity disorder (ADHD), and anxiety disorders. 

It is important to note that all individuals who have a DSM-IV diagnosis on the autism spectrum, including those with Asperger syndrome and PDD-NOS, will be able to retain an ASD diagnosis. This means that no one should “lose” their diagnosis because of the changes in diagnostic criteria.  According to DSM-5, individuals with a well-established DSM-IV diagnosis of Autistic Disorder, Asperger’s Disorder, or PDD-NOS should be given a diagnosis of ASD.  Those who have marked deficits in social communication, but whose symptoms do not meet the criteria for ASD, should be evaluated for Social (Pragmatic) Communication Disorder.
Conclusion
In conclusion, the DSM-5 category of autism spectrum disorder (ASD), which subsumes the current diagnoses of autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS), better describes our current understanding about the clinical presentation and course of the neurodevelopmental disorders. Conceptualizing autism as a spectrum condition rather than a categorical diagnostic entity is in keeping with the extant research suggesting that there is no clear evidence that Asperger’s disorder and high-functioning autism are different disorders. As Gillberg (2001) notes, the terms Asperger's syndrome and high-functioning autism are more likely “synonyms” than labels for different disorders. Lord (2011) also comments that although there has been much controversy about whether there should be separate diagnoses, "Most of the research has suggested that Asperger's syndrome really isn't different from other autism spectrum disorders." "The take-home message is that there really should be just a general category of autism spectrum disorder, and then clinicians should be able to describe a child's severity on these separate dimensions." Unfortunately, many individuals may have been advised (or assumed) that a diagnosis of Asperger’s disorder was separate and distinct from autism and that intervention/treatment, course, and outcome were clinically different for each disorder. While including Asperger’s Disorder under the DSM-5 category of ASD will likely continue to require a period of transition and adjustment, this dimensional approach to diagnosis will likely result in more effective identification, treatment, and research for individuals on the spectrum.
Key References & Further Reading
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders. Washington, DC: Author.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.
Attwood, T. (2006). The complete guide to Asperger’s syndrome. London: Jessica Kingsley.
Carpenter, L. A., Soorya, L. & Halpern, D. (2009). Asperger’s syndrome and high- functioning autism. Pediatric Annals, 38, 30-35.
Eisenmajer, R., Prior, M., Leekam, S., Wing, L., Ong, B., Gould, J. & Welham, M. (1998)
Delayed Language Onset as a Predictor of Clinical Symptoms in Pervasive Developmental Disorders. Journal of Autism and Developmental Disorders, 28, 527–34.
Gillberg, C (2001). Asperger’s syndrome and high functioning autism: Shared deficits or
different Disorders? Journal of Developmental and Learning Disorders, 5, 79-94.
Howlin, P. (2003). Outcome in high-functioning adults with autism with and without early language delays: Implications for the differentiation between autism and Asperger syndrome. Journal of Autism and Developmental Disorders, 33, 3–13.
Leekam, S., Libby, S., Wing, L., Gould, J. & Gillberg, C. (2000) Comparison of ICD-10 and Gillberg’s criteria for Asperger syndrome. Autism, 4, 11–28.
Lord, C. et al. (2011). A multisite study of the clinical diagnosis of different autism spectrum disorders. Archives of General Psychiatry. doi:10.1001/archgenpsychiatry.2011.148
Macintosh, K., & Dissanayake, C. (2006). Social skills and problem behaviors in school aged children with high-functioning autism and Asperger’s disorder. Journal of Autism and Developmental Disorders, 36, 1065–1076.
Macintosh, K.E., & Dissanayake, C. (2004). Annotation: The similarities and differences between autistic disorder and Asperger’s disorder: A review of the empirical evidence. Journal of Child Psychology and Psychiatry, 45, 421–434.
Mayes, S., & Calhoun, S. (2003). Relationship between Asperger syndrome and high functioning autism. In M. Prior (Ed.), Learning and behavior problems in Asperger syndrome (pp. 15-34). New York: Guilford Press.
Mayes SD, Calhoun SL, Crites DL (2001) Does DSM-IV Asperger’s disorder exist? Journal of Abnormal Child Psychology, 29, 263–271.
Miller, J. N., & Ozonoff, S. (2000). The external validity of Asperger disorder: Lack of evidence from the domain of neuropsychology. Journal of Abnormal Psychology, 109, 227–238.
Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent’s guide to Asperger syndrome and high-functioning autism: How to meet the challenges and help your child to thrive. New York: Guilford Press.
Ozonoff, S., South, M., & Miller, J. N. (2000). DSM-IV-defined Asperger syndrome: Cognitive, behavioral and early history differentiation from high-functioning autism. Autism, 4, 29–46.
Szatmari, P., Bryson, S.E., Streiner, D.L., Wilson, F.J., Archer, L., & Ryerse, C. (2000). Two year outcome of preschool children with autism or Asperger’s syndrome. American Journal of Psychiatry, 15, 1980–1987.
Szatmari, P., Bryson, S., Duku, E., Vaccarella, L., Zwaigenbaum, L., Bennett, L. & Boyle, M.H. (2009). Similar developmental trajectories in autism and Asperger syndrome: from early childhood to adolescence. Journal of Child Psychology and Psychiatry, 50, 1459-1467.
Wilkinson, L. A. (2008). Adults with Asperger syndrome: A childhood disorder grows up. The Psychologist, 21, 764-770.
Wilkinson, L. A. (2010). A best practice guide to assessment and intervention for Asperger syndrome and autism in schools. London: Jessica Kingsley Publishers.
Wilkinson, L. A. (Ed.) (2014). Autism spectrum disorder in children and adolescents: Evidence-based assessment and intervention in schools. American Psychological Association (APA): Washington, DC.
Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for Asperger autism spectrum disorder in schools. London: Jessica Kingsley Publishers.

Williams, K., Tuck, M., Helmer, M., Bartak, L., Mellis, C. & Peat, J.K. (2008). Diagnostic labelling of autism spectrum disorders in NSW. Journal of Paediatrics and Child Health, 44, 108-113.
Wing, L. (2005). Problems of categorical classification systems. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders: Vol. 1. Diagnosis, development, neurobiology, and behavior (3rd ed., pp. 583–605). New York: John Wiley.
Witwer, A.N., & Lecavalier, L. (2008). Validity of autism spectrum disorder subtypes. Journal of Autism and Developmental Disorders, 38, 1611–1624.
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, chartered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe 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. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Monday, July 27, 2015

Alexithymia and Emotion Recognition in Autism



Alexithymia is characterized by difficulties in identifying, describing, and processing one's own feelings, often marked by a lack of understanding of the feelings of others, and difficulty distinguishing between feelings and the bodily sensations of emotional arousal. Alexithymia is not a formal clinical diagnosis and is best conceptualized as a dimensional personality trait that is normally distributed in the general population (with estimates of 10%) and varies in severity from person to person. However, there is evidence to suggest that it is associated with an increased risk for mental health problems. For example, several studies indicate that even in childhood, alexithymia and difficulties in the domain of emotion processing are positively related to internalizing problems such as anxiety and depression.
Research indicates that alexithymia overlaps with autism spectrum disorder (ASD). Although alexithymia is not a core feature of autism, recent studies have found varying degrees of this trait in 50 to 85% of individuals with autism ASD. The alexithymia trait appears to have the following properties: (a) it is more common in individuals with ASD than in the general population (b) it is more common in parents of individuals with ASD than in parents of individuals with another developmental disabilities, (c) it is stable over time in ASD, and (d) problems in the domain of emotion awareness are positively related to depression, anxiety, somatic complaints, worry and rumination. There is also evidence to indicate that the alexithymia trait might be part of the broader autism phenotype and a significant component of the emotion processing difficulties observed in ASD. It is uncertain whether the problem of emotion recognition commonly attributed to individuals on the autism spectrum is a result of the disorder itself, or if it is due to the large co-occurrence (comorbidity) between alexithymia and autism.
Given the apparent association between alexithymia and autism, it’s especially important to investigate the relative contribution of this dimensional trait to the impairment in social functioning experienced by individuals with ASD. An important question for future research relates to the prevalence of high levels of alexithymia in ASD compared to neurotypical individuals and how to explain the high co-occurrence (comorbidity) between alexithymia and ASD. Is alexithymia a neuroanatomical structural consequence or is the result of a neurobiological impairment, or is it a distinctive personality trait of individuals with ASD? Does the level of alexithymia predict symptom severity in ASD? Although not a diagnostic feature of autism, would alexithymia be a useful diagnostic marker for ASD? Because alexithymia is associated with increased risk of mental health problems (i.e., anxiety and depression), should a measure of alexithymia be included in an assessment battery for ASD? As with most autism research, there are more questions than answers.
Bird, G., Silani, G., Brindley, R., White, S., Frith, U., & Singer, T. (2010).  Empathic brain responses in insula are modulated by levels of alexithymia but not autism. Brain, 133, 1515-1525.
Szatmari, P., Georgiades, S., Duku, E., Zwaigenbaum, L., Goldberg, J., & Bennett, T. (2008). Alexithymia in Parents of Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 38, 1859-1865.

Friday, July 10, 2015

Healthcare Providers Unprepared to Treat adults with Autism

Healthcare Providers Unprepared to Treat Autistic Adults 

It is estimated that nearly a half million youth with autism will enter adulthood over the next decade. As children with autism become adults their primary medical care will move from pediatrics to adult medicine. A survey by the Autism Research Program at Kaiser Permanente Northern California found that many healthcare providers are ill prepared to treat adults on the autism spectrum. The findings were reported at the International Meeting for Autism Research in Salt Lake City, Utah.
Researchers polled providers of adult primary care, mental health, and obstetrics and gynecology services through the insurer’s network. Practitioners were asked about their ability to recognize autism, their knowledge of the disorder, their comfort level in treating those with the condition and their need for training and resources.
Of 922 providers surveyed, 77 percent rated their ability to treat patients on the spectrum as poor or fair. While more that 90 percent of the providers said they would investigate the possibility of autism in patients with limited eye contact, most under-reported the number of people on the autism spectrum who were actually under their care. In addition, only 13 percent of providers indicated that they had adequate tools or referral resources to appropriately accommodate those with autism.
To better understand the providers’ responses, follow-up interviews were conducted with nine primary care physicians. The researchers found that the majority had received limited or no autism training in medical school or during their residencies. All of the providers indicated a need for more education and improvements in the transition from pediatric care providers to adult medicine for those on the autism spectrum.
The preparation of healthcare providers is a pressing issue as an increasing number of individuals with autism are expected to enter adulthood in the coming years. Further research is urgently needed to study the transition from pediatric to adult healthcare and identify strategies that will lead to better medical care for adults on the autism spectrum.

Wednesday, July 1, 2015

Video Game Use and Problem Behaviors in Autism


Video Game Use and Problem Behaviors in Autism

Children with autism spectrum disorder (ASD) often have strong preferences for screen-based media, particularly video games. Although
a large body of research has demonstrated a clear effect of both video game content and genre on behavior problems among typically developing children and adolescents, the relationship between these variables has not been previously examined among children with ASD.  This study examined the relationships between aspects of video game use and problem behaviors among a sample of 169 boys (ages 8–18) with ASD. Parents reported on their children's behavioral functioning and video game habits and preferences, including the average number of hours spent playing video games per day, preferred game types (genres), and problematic (e.g., addictive) video game play patterns.  
                        
                                                                              Results
The results indicated that amount of game play alone (an average of 2.4 hours a day) was not associated with problem behaviors. Rather, the most reliable predictors of problem behaviors, even when controlling for age and amount of time spent playing video games, were video game genre and problematic, or addictive, qualities of play. Specifically, significant positive relationships were found between problematic video games use and both inattention and oppositional symptoms. Boys who played Role-Playing (genre) games had higher levels of both problematic game use and oppositional behavior. Interestingly, however, hyperactivity was not significantly associated with either problematic video game use or video game genre. Lastly, educational and sports games predicted less oppositional behavior. 
The results of this study are consistent, in part, with findings from the general population. For example, the significant association between problematic video game play, inattention, and oppositional behavior reported in the study is similar to those reported in adolescents and adults without ASD. The finding that Role-Playing games were highly associated with problematic video game play and externalizing problem behavior is also consistent with previous research among individuals without ASD
Implications

This study underlines the clinical importance of examining video game use patterns among children with ASD, and points to a need for future experimental and longitudinal research in this area. For example, Role-Playing games may contribute to an even greater potential for problematic game use patterns among children with ASD, given their particular game-design features. Since children with ASD tend to engage in restricted and repetitive behaviors (RRBs), they might be at higher risk for developing addictive game play patterns. Preoccupation with video games and trouble disengaging from them may serve as antecedents for disruptive behavior, as has been anecdotally reported among other children. It appears that for children with ASD, the potential for preoccupation represents a key game play quality that relates closely with the occurrence of problem behaviors. Future research in this area is critical in order to inform video game use recommendations for both parents and clinicians. As emerging research investigates the effectiveness of video-game based interventions for improving functional outcomes, it will be equally important to understand the mechanisms and nature of problematic aspects of game play among children with ASD.
Mazurek, M.O. & Engelhardt, C.R. (2013). Video game use and problem behaviors in boys with autism spectrum disorders. Research in Autism Spectrum Disorders, 7, 316-324.
Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Friday, June 19, 2015

Best Practice Review: Childhood Autism Rating Scale, Second Edition (CARS 2)


The Childhood Autism Rating Scale, Second Edition (CARS 2), consists of two 15-item rating scales completed by the practitioner and a Parent/Caregiver Questionnaire. The Standard Version Rating Booklet (CARS 2-ST) is equivalent to the original CARS and is used with children younger than 6 years of age and those with communication difficulties or below-average cognitive ability. The High-Functioning Version Rating Booklet (CARS 2-HF) is an alternative for assessing verbally fluent children and youth, 6 years of age and older, with average or above intellectual ability. The Questionnaire for Parents or Caregivers (CARS 2-QPC) is an unscored questionnaire designed to obtain pertinent developmental information from parents or caregivers. 

The CARS 2-ST and CARS 2-HF each include 15 items addressing the following functional areas:
  • Relating to People
  • Imitation (ST); Social-Emotional Understanding (HF)
  • Emotional Response (ST); Emotional Expression and Regulation of Emotions (HF)
  • Body Use
  • Object Use (ST); Object Use in Play (HF)
  • Adaptation to Change (ST); Adaptation to Change/Restricted Interests (HF)
  • Visual Response
  • Listening Response
  • Taste, Smell, and Touch Response and Use
  • Fear or Nervousness (ST); Fear or Anxiety (HF)
  • Verbal Communication
  • Nonverbal Communication
  • Activity Level (ST); Thinking/Cognitive Integration Skills (HF)
  • Level and Consistency of Intellectual Response
  • General Impressions
Items on the Standard form duplicate those on the original CARS, while items on the HF form have been modified to reflect current research on the characteristics of higher functioning children with autism spectrum disorder (ASD). To complete the ratings on the CARS 2-HF, the professional must have convergent information from MULTIPLE sources such as direct observation, parent and teacher interviews, prior assessments of cognitive functioning and adaptive behavior, and information from the Questionnaire for Parents or Caregivers (CARS 2-QPC). Ratings are based not only on frequency of the behavior in question, but also on its intensity, atypicality, and duration. Rating values for all items are summed to produce a Total Raw Score. Each form includes a graph that allows the practitioner quickly convert the Total Raw Score to a standard score or percentile rank (based on a clinical sample of individuals diagnosed with autism spectrum disorders). 
The psychometric properties of the CARS 2-HF indicate a high degree of internal consistency and good interrater reliability. Validity information reports an overall discrimination index value of .93, with sensitivity and specificity values of .81 and .87, respectively. The HF form also demonstrates a relatively strong relationship with the “gold standard” Autism Diagnostic Observation Schedule (ADOS).

The following are critical features of the CARS 2-HF.
1. Parents and teachers should NOT be asked to complete the CARS 2 forms. Only well-informed professionals should complete the ratings.
2. The CARS 2 should NOT be used for screening in the general school-age population.
3. The practitioner must have a good understanding of the criteria for making the ratings and be in a position to collect information from multiple sources (direct observation, parent and teacher reports, prior assessments and clinical impressions).
4. The ratings from the CARS 2 should be considered as only one part of a multimodal, multidisciplinary decision-making process in the identification of children with ASD.
5. Direct observation and a developmental history MUST always be included in the assessment process.
6. Scores on the CARS 2 are interpreted relative to the level (severity) of autism-related behaviors compared to a clinical sample of individuals diagnosed with autism, NOT the typical individual.
In summary, The CARS 2-HF represents an important alternative that will be welcomed by school-based professionals such as school psychologists and speech/language pathologists. It is a sensitive and reliable instrument that will find a place in the school-based professional’s assessment “Tool Box.” Given the dramatic increase in the numbers of students being referred for screening and assessment, the CARS 2-HF is a useful instrument that helps quantify the level of symptom severity and importantly, assist with intervention and program planning. The CARS 2-HF scores are particularly helpful in identifying more capable children with autism spectrum disorder. Of course, the CARS 2 is not intended to be and should not be used as the sole instrument in making diagnostic or classification decisions. An example of a comprehensive assessment battery can be found in A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).
Schopler, E, Van Bourgondien, M. E., Wellman, G. J., & Love, S. R. (2010). Childhood Autism Rating Scale, Second Edition. Los Angeles, CA: Western Psychological Services.
Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Thursday, June 4, 2015

The Fourth “R” – Relationship Skills in Our Schools

The Fourth R

The three R’s - Reading, Writing and Arithmetic - reflect the traditional basic skills approach to education which focuses on academic benchmarks, measurable standards, and high-stakes testing. However, the school experience is about much more than mastering the three R’s. The ability to relate and interact with others is the foundation for successful human connection and adjustment to the social world. In fact, one of the best childhood predictors of adult adaptation and well-being is not IQ or school grades, but rather, the competence with which children relate to both peers and adults. Given the life-long consequences of poor social functioning, we should move beyond a focus on academic competencies to include Relationship and social learning as the fourth ‘R’ in our schools. 
Social Relationship Skills
Although teaching the fourth R benefits all children, it has the greatest potential to help students with autism. Most autistic children are educated in general education classrooms, and even though many successfully master the 3 R’s, all experience varying degrees of social relationship problems. This includes difficulty communicating with others, establishing and maintaining reciprocal social relationships, taking another person’s perspective, and inferring the interests of others. Consequently, (social) relationship skills should be taught alongside reading, writing, and arithmetic. For children with social-communication challenges to learn relationship skills, we must teach them. Social relationship instruction commonly involves teaching specific skills (e.g., maintaining eye contact, listening, initiating conversation) through behavioral and social learning techniques. Instructional goals usually include skill acquisition, performance, generalization and maintenance of prosocial behaviors, and the reduction or elimination of competing behaviors.
The overarching goal of social skills instruction should be the development of social and communicative competency through direct teaching, modeling, coaching, and role-playing activities in real-world situations. Strategies designed to promote skill acquisition in building social relationships may include direct instruction, modeling, role-play, structured activities, social stories, incidental teaching, video role-play with feedback, communication scripts, formal social groups, pivotal response training, self-monitoring, and coaching. Although there is no “one-size-fits-all” approach that will help children to be socially successful, the following are promising strategies for facilitating and reinforcing social-communication competency in the classroom.
Increase social motivation by encouraging self-awareness - Begin with simple, easily-learned skills and intersperse new skills with those previously mastered.  Also, provide social skills training and practice opportunities in a number of settings to encourage students to apply new skills to multiple, real life situations.
Increase social initiations and improve age-appropriate social responding by making social rules clear and concrete - Teach simple social response scripts for common situations, and use natural reinforcers for social initiations and response attempts. In addition, utilize modeling and role-play to teach and reinforce prosocial skills, and build social activities around preferred activities/interests.
Promote skill generalization and coordinate peer involvement (e.g., prompting and initiating social interactions; maintaining physical proximity - Use several individuals with whom to practice skills, including parents, and provide opportunities to apply learned skills in safe, natural settings (e.g., field trips). Look for opportunities to teach and reinforce social skills as often as possible throughout the school day.
Teach effective social interaction and communication as replacements for challenging behavior - Model, demonstrate, coach, and/or role-play the appropriate interaction skills. Teach students to ask for help during difficult activities or to negotiate alternative times to finish work. Encourage positive social interactions such as conversational skills to help students with challenging behavior obtain positive peer attention. 
Conclusion

Social relationship skills are critical to successful social, emotional, and cognitive development and to long-term outcomes for students. Teaching the fourth R can have both preventive and remedial effects that can help reduce the risk for negative outcomes not only for children with autism, but for all children. 

© Lee A. Wilkinson, PhD

Wednesday, April 15, 2015

Parents of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress

Parents are often overwhelmed by the challenges presented by a child with an autism spectrum disorder (ASD). Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical conditions. Mothers of children with ASD, in particular, appear to face unique challenges that potentially have an impact on their health and wellbeing.
Parents of children with ASD are increasingly involved in the provision of early intervention and learning activities to promote positive outcomes for their children. However, several studies have documented that parental stress as well as a lack of time and energy are barriers to providing early intervention activities. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with disabilities. Consequently, understanding factors, such as lack of energy or fatigue that may limit the capacity of the parent to assist in promoting their child’s development is critical for this group.
                                                                                Research
A study published in the journal Autism examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children ages 2-5 years with ASD participated in the study and completed questionnaires assessing level of fatigue, parenting self-efficacy (belief about the ability to parent successfully), children’s behavioral and emotional problems, sleep quality, parent support needs, and overall physical activity. The study found that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction.
These findings were somewhat expected given the additional caregiving demands, parenting challenges and pressures of managing family life when raising a child with an ASD. Likewise, It is also probable that symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to, or exacerbate fatigue. The researchers also note that it was not surprising that poor sleep quality was associated with higher levels of fatigue given the large amount of research indicating that inadequate sleep and poor sleep quality is associated with a range of physical health and wellbeing difficulties. Parents of children with ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of sleep problems in their children. Parents reported that their child waking was the primary reason for sleep disruption. For other parents in the study, stress, anxiety and not being able to wind down were stated reasons for sleep disruption.
                                                                              Implications
What are the implications of this study? The findings clearly indicate the need for interventions to specifically target parental fatigue and its impact on families affected by ASD both in the present and longer term. In addition to interventions targeting child sleep problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on wellbeing, parenting and caregiving. This includes information about strategies to minimize and/or cope with the effects of sleep disruption, increase health and self-care behaviors, and strengthen opportunities for social support. It is well established that social support is protective of optimal parent wellbeing and, therefore, is an important component of any intervention to address fatigue and wellbeing of parents of children with an ASD. Parents with limited assistance to share the daily demands of caregiving and family life are likely to be at greater risk of fatigue than parents with more support. For parents with limited support, there might also be fewer opportunities to engage in self-care behaviors that are likely to alleviate or protect them from fatigue.
From a clinical perspective, professionals working with families of children with an ASD should be aware of negative effects of fatigue in addition to other wellbeing difficulties, such as stress and anxiety. An assessment of the presence and severity of the physical, cognitive and emotional symptoms of fatigue, as well as the perceived impact on daily functioning, mood, relationships, parenting and other aspects of caregiving is important. Lastly, future work in this area should involve the development and evaluation of information resources and intervention approaches to assist parents of children with an ASD to manage fatigue and promote their overall wellbeing. The longer-term benefits for parents in terms of strengthening their overall health, wellbeing and parenting should also be a focus of research. 
Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480.
DOI: 10.1177/1362361311416830
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, chartered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe 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. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

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