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)