Saturday, December 29, 2012

The Year in Autism: Top Research Advances in 2012

The topic of autism was prominent in the media headlines for 2012. Public awareness was one again heightened by news from the U.S. Centers for Disease Control and Prevention (CDC) that more children than ever before are being diagnosed with autism spectrum disorders (ASD) and that that 1 in 88 eight year-old children has an ASD. The increase in occurrence of autism was also evident in the number of students with ASD receiving special educational services. Data collected for the US Department of Education indicated that the number of children ages 6 through 21 identified with autism served under the Individuals With Disabilities Act (IDEA) increased from 1.5 to 5.8 percent of all identified disabilities. Controversy also continued to surround the American Psychiatric Association’s recommendation and subsequent approval to include a new category of “autism spectrum disorder,” which subsumes the current diagnoses of autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). There was also an expansion of autism research and an increase in publications. While there were no dramatic “breakthroughs,” many of this year’s advances reflect broad progress in several areas of autism science. For example, there was new research regarding possible links between environmental exposures, genetic vulnerability and autism risk. There was also progress in the areas of genetics and behavioral therapies. This includes evidence that intensive early intervention can change autism’s underlying brain biology and new insights into the complexity of autism genetics.

According to Autism Speaks, the following represent the most important advances in autism research during 2012. Please note that the list is presented in no specific order (order does not imply relative importance).

Lee A. Wilkinson, PhD is the 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.

Monday, December 24, 2012

Impact of ADHD Symptoms on Children with ASD

One of the most controversial comorbidities in children with ASD is the co-occurrence of Attention Deficit Hyperactivity Disorder (ADHD). Comorbidity refers to the presence of more than one diagnosis occurring in an individual at the same time. Although there continues to a debate about ADHD comorbidity in ASD, research, practice and theoretical models suggest that comorbidity between these disorders is relevant and occurs frequently. For example, a study of comorbid psychiatric disorders in children with ASD found that approximately 71% of cases had a least one comorbid psychiatric disorder, with the most common comorbidities being social anxiety (29%), ADHD (28%), and Oppositional Defiant Disorder (28%). Although the current DSM-IV-TR hierarchical rules prohibit the concurrent diagnosis of ASD/PDD and ADHD, there is a relatively high frequency of impulsivity and inattention in children with ASD. In fact, ADHD is a relatively common initial diagnosis in young children with ASD. Some researchers suggest that there are sub-groups of children with ASD with and without ADHD symptoms.

Current Research 

Although comorbid psychiatric disorders in children with ASD have been studied previously, there is a need to examine the impact of co-occurring ADHD symptoms in children with ASD. A recent study published in the journal Pediatrics evaluated the frequency of co-occurring ADHD symptoms in a well-defined cohort of children with ASD and examined the relationship between ADHD symptoms and both adaptive functioning and health-related quality of life as reported by parents or other primary caregivers. The purpose of the study was to: (a) document the frequency of parent-reported ADHD symptoms in a large, geographically diverse population of children with ASD, and (b) further evaluate the differences between children with ASD and ADHD symptoms and those with few or no ADHD symptoms, with an emphasis on parent-report measures of adaptive functioning and health-related quality of life (HRQoL). Based on a review of previous studies, the researchers hypothesized that children with ASD and comorbid ADHD symptoms would have poorer HRQoL and greater impairment in adaptive functioning than children with ASD and few or no ADHD symptoms.
 Method and Outcome Measures
The research was conducted as part of the activities of the Autism Speaks Autism Treatment Network (ATN), a registry collecting data on children with ASD across 14 sites in the United States and Canada. A total of 3066 children and adolescents ages 2 to 18 were eligible for participation in the study. All participants had a clinical diagnosis of ASD based on one or more diagnostic measures.
Parents completed the Child Behavior Checklist (CBCL), a parent/caregiver measure of a variety of problems exhibited during childhood. T-scores on 2 ADHD-related scales from the CBCL were used to indicate the presence of ADHD symptoms. Participants were divided into groups based on whether their parents/caregivers rated them as having clinically significant T-scores on the Attention Problem and Attention Deficit Hyperactivity Problem subscales of the CBCL. Parents were interviewed to complete the Vineland Adaptive Behavior Scales, Second Edition (VABS-II). Standard scores from VABS-II and raw scores from the parent report version of Pediatric Quality of Life Inventory (PedsQL) were then compared between groups with the use of multivariate analyses.
Results indicated that 41% of the 3,000 participants had elevated scores on one CBCL ADHD-related subscale and 19% on both subscales. Analysis of responses to the PedsQL revealed that the ASD/ADHD group had lower scores in all health-related areas measured (School Functioning, Physical Functioning, Emotional Functioning, and Social Functioning) in comparison with the group of children with ASD alone. The ASD/ADHD group also obtained statistically significantly lower scores on all adaptive behavior domains of the VABS-II (Communication, Daily Living Skills, Socialization, and Adaptive Composite) when compared with the group of children with only ASD.
 Conclusion and Implications
Overall results of the study suggest greater impairment in adaptive functioning and a poorer health-related quality of life for children with ASD and clinically significant ADHD symptoms in comparison with children with ASD and fewer ADHD symptoms. This supports previous research on the negative relationship between ADHD symptoms and the development of functional life and other adaptive skills and provides further documentation regarding the relationship between comorbid symptoms and overall health-related quality of life. The results also suggest the need for additional research. For example, it would be important to determine if children with ASD that meet diagnostic criteria for ADHD differ significantly from children with ASD and ADHD symptoms in the areas of adaptive skill development and HRQoL, as well as other important areas. This question is particularly important with the impending publication of DSM-V which will remove the restriction on the comorbid ADHD diagnosis in children with ASD.
These results of the study have important implications for practitioners in health care, mental health, and educational contexts. Externalizing behavior problems, including ADHD symptoms, have been found to have a strong negative relationship with family functioning and parenting stress in children with ASD. Reducing ADHD symptoms in children with ASD, in addition to treating core symptoms, may result in greater improvement in HRQoL and adaptive functioning. Improving adaptive functioning is especially important in that a child’s level of adaptive functioning can directly influence their type of educational setting and future adjustment. Children with better adaptive skills have more opportunity to participate in grade-level activities with typical peers. Consequently, clinicians and health-care professionals should screen for symptoms of ADHD in children with ASD and, if present, consider these symptoms when developing interventions and treatment protocols.
Sikora, D. M., Vora, P., Coury, D. L., & Rosenberg, D. (2012). Attention-Deficit/Hyperactivity Disorder Symptoms, Adaptive Functioning, and Quality of Life in Children With Autism Spectrum Disorder. Pediatrics, 130, S91-97. DOI: 10.1542/peds.2012-0900G
Kuhlthau K., Orlich F., Hall T.A., et al. (2010). Health- Related Quality of Life in children with autism spectrum disorders: results from the autism treatment network. Journal of Autism and Developmental Disorders, 40(6), 721–729.
Murray M.J., (2010). Attention-deficit/hyperactivity disorder in the context of autism spectrum disorders. Current Psychiatry Reports, 12(5), 382–388.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also the editor of a recent volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.


Monday, December 10, 2012

DSM-5 ASD Criteria Unlikely to Exclude Many Individuals

The American Psychiatric Association voted to approve the revised fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5) on December 1, 2012. The manual is used by clinicians nationwide to diagnose mental health conditions and will be published in spring 2013. Among other changes, the revision introduces fundamental changes in the diagnosis of autism. It collapses the previously distinct autism subtypes, including autistic disorder, Asperger’s disorder (syndrome), and pervasive developmental disorder-not otherwise specified (PDD-NOS) into a single unifying diagnosis of autism spectrum disorder (ASD). Further, the current DSM-IV-TR three symptom domains (triad) of social impairment, communication deficits and repetitive/restricted behaviors, interests, or activities will be replaced with two domains, social communication impairment and repetitive/restricted behaviors or interests. Changes also include greater flexibility in the criteria for age of onset and addition of symptoms not previously included in the DSM-IV-TR such as sensory interests and aversions.
The new DSM-5 criteria for ASD have created significant controversy with predictions that it would exclude many individuals from an autism diagnosis and thus make it difficult for them to access services. Critics suggest that the new criteria are too narrow and will leave out a large number of people currently diagnosed with Asperger syndrome and PDD-NOS). However, early studies suggest that fears that many individuals will be excluded appear to be largely unfounded. For example, a recently published field trial suggests that the revisions 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.” The DSM-5 criteria also proved highly reliable, meaning that two different clinicians using them were likely to diagnose the same person with the same disorder.
A comprehensive study published in the American Journal of Psychiatry also lends support to application of the DSM-5 criteria. Researchers evaluated the new criteria in children with DSM-IV diagnoses of pervasive developmental disorders (PDD) and non-PDD diagnoses and found that the DSM-5 criteria identified a majority of children with clinical DSM-IV diagnoses. The study used three data sets from 4,453 children with DSM-IV clinical PDD diagnoses and 690 with non-PDD diagnoses (e.g., language disorder).  Items from a parent report measure of ASD symptoms (Autism Diagnostic Interview–Revised) and a clinical observation instrument (Autism Diagnostic Observation Schedule) were matched to DSM-5 criteria and used to evaluate the sensitivity (percentage individuals with ASD who are correctly identified) and specificity (percentage of individuals without ASD who are correctly identified) of the DSM-5 criteria and current DSM-IV criteria when compared with clinical diagnoses. According to the results, the majority of children with clinical diagnoses of PDD met the DSM-5 ASD criteria according to item scores on the Autism Diagnostic Interview–Revised and the Autism Diagnostic Observation Schedule. Application of the DSM-5 criteria demonstrated adequate sensitivity across all groups, On the basis of either parent report or clinical observation, DSM-5 sensitivity ranged from 0.97 to 0.99 for any PDD. Overall, the sensitivity values of the DSM-5 and DSM-IV criteria were comparable. 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, and anxiety disorders. The researchers conclude that “Based on symptom extraction from previously collected data, our findings indicate that the majority of children with DSM-IV PDD diagnoses would continue to be eligible for an ASD diagnosis under DSM-5. Additionally, these results further suggest that the revisions to the criteria, when applied to records of children with non-PDD diagnoses, yield fewer misclassifications.”
Autism researcher Geraldine Dawson, chief science officer for Autism Speaks, commented that although the new criteria appear to be effective, it will be critical to monitor so that children don't lose services. According to an open letter from Dawson, “We are reassured that the DSM-5 committee has stated that all individuals who currently have a diagnosis on the autism spectrum, including those with Asperger syndrome, will be able to retain an ASD diagnosis. This means that no one with a current diagnosis on the autism spectrum should “lose” their diagnosis because of the changes in diagnostic criteria. Also, the committee has stressed that the new DSM-5 criteria represent a “living document in which changes can and likely will be made as new studies are conducted.” “Today, after careful consideration, we are acknowledging the APA’s approval of the DSM-5 with cautious optimism” she said.
Huerta, M., Bishop, S. L., Duncan, A., Hus, V., & Lord, C. (2012). Application of DSM-5 Criteria for Autism Spectrum Disorder to Three Samples of Children With DSM-IV Diagnoses of Pervasive Developmental Disorders. American Journal of Psychiatry, 169, 1056–1064.
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

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 new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.

Thursday, December 6, 2012

Book Review: Autism and Asperger's in Schools

Book Review: A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools by Lee A. Wilkinson
I have had to read many research-based guides during my professional career and most of them were well written yet very technical and difficult to understand. I am pleased to say that I did not find that to be the case with A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools by Lee Wilkinson. The author not only presents academic research but he translates it all into words that are easy for anyone to comprehend.

All 208 pages of this book are filled with research-based information about the best practices schools should adhere to when assessing and intervening with children in schools. The author does a wonderful job presenting all of the data, facts, figures and statistics in a very structured layout that is straightforward, practical and convenient to access.

As the prevalence of Autism Spectrum Disorders continues to expand, this book is a crucial addition to any school library. It is no longer possible for school systems to ignore or continue to deal with developmental delays in piecemeal fashion and Lee Wilkinson has put together an excellent comprehensive manual to guide school personnel in addressing these issues.
The increased prevalence of Autism Spectrum Disorders requires professionals to identify children as early as possible in their school experience. Whether a child comes to school diagnosed or not Lee Wilkinson’s book is the perfect guide for schools to follow in order to set the ball in motion to access the earliest intervention services possible.
I found this to be a very user-friendly book as evidenced by the following:
  • The two case studies Wilkinson includes in the book helps the reader comprehend all the information presented by actually seeing the best practices in action and how they apply in real life situations.
  • The author was very thoughtful to include a glossary of terms and acronyms to help those who are new to the arena of Autism Spectrum Disorders translate meaning and decipher what the abbreviated codes stand for quickly.
  • Frequently asked questions and an abundance of forms such as worksheets and checklists make this book a convenient one stop shopping experience for the reader.
  • The “Quick Reference” boxes at the end of each chapter help to summarize the chapter information even further or highlight a specific strategy that was presented.
  • I was extremely impressed with the detailed “index to best practice recommendations” which not only summarizes the process at the various stages but the index also supplies the corresponding page for the reader to access more detailed information about each practice.
As a school social worker who worked in the public school system with special needs children for seventeen years this book would have been a very helpful tool for all school based professionals to access. With the rising incidence of children being diagnosed on the Autism spectrum, this guide should be required reading for all direct service providers who work with children in the school setting. On behalf of the Autism community I extend a sincere thank you to Lee Wilkinson for this impressive and most valuable resource!

Reviewed by Connie

Parent Coaching for Autism

Monday, December 3, 2012

American Psychiatric Association Approves DSM-5 ASD Category

The American Psychiatric Association’s recommendation to delete (remove) Asperger’s disorder as a separate diagnostic category from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was approved on December 1st by the by the Association's Board of Trustees.  Specifically, DSM-5 will include a new category of “autism spectrum disorder,” which subsumes the current diagnoses of autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). This new category reflects DSM-V Work Group members’ conclusion that “a single spectrum disorder” better describes our current understanding of the neurodevelopmental disorders. 

The objective of the new ASD criteria is that every individual who has significant “impairment” in social-communication and restricted and repetitive behavior or interests (RRBI) meet the diagnostic criteria for autism spectrum disorder. Language impairment/delay will no longer be a necessary criterion for diagnosis of ASD. Therefore 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, would now meet the criteria for the new category of ASD. The criteria also feature dimensions of severity that include current levels of language and intellectual functioning. Additionally, symptom examples are expected to be provided for all ages and language levels, so that ASD will not be overlooked in persons of average or superior IQ who are experiencing “clinical” levels of difficulty. Full details of all the revisions will be available in May 2013 when the American Psychiatric Association's new diagnostic manual is published. 

Critics of the new category of ASD expressed concern that individuals would lose their current diagnoses and no longer be eligible for special services. But the revision will not affect their education services, experts say. The term "autism spectrum disorder (ASD)," is used by many experts and practitioners in the field. The new category will include the complete autism spectrum, from mild to the more severe forms of the disorder. Catherine Lord, an autism expert at Weill Cornell Medical College in New York and member of psychiatric group's autism task force, commented that anyone who met criteria for Asperger's Disorder (syndrome) in the current manual (DSM-IV-TR) would be included in the new diagnosis. Lord also comments that although there has been much controversy about whether there should be separate diagnoses, "Most of the research has suggested that Asperger 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." Another reason for the change is that some states and school systems don't provide services for children and adults with Asperger's, or provide fewer services than those given an autism diagnosis, she said. Autism researcher Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, said small studies have suggested the new criteria will be effective. But she commented that it will be critical to monitor so that children don't lose services. While including Asperger’s Disorder under the new category of “autism spectrum disorder” may well require a period of transition and adjustment, the proposed “dimensional” approach to diagnosis will likely result in more effective identification, treatment, and research for individuals on the spectrum.

A more detailed summary and discussion of the proposed revisions to DSM disorders and criteria are available at <> 

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 (2011). DSM-5 development. A 09 Autism Spectrum Disorder.
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
Wilkinson, L. A. (2010). A best practice guide to assessment and intervention for Asperger syndrome and autism in schools. London: Jessica Kingsley Publishers.

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.

Sunday, December 2, 2012

Autism and Inclusive Education

The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) (P.L. 108-446) ( guarantees a free and appropriate public education (FAPE) in the least restrictive environment (LRE) for every student with a disability. The LRE provision mandates that “to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”  In general, inclusion (or inclusive education) with typical peers is often considered to be the best placement option for students with disabilities. However, a study published in Pediatrics, the official journal of the American Academy of Pediatrics, calls into question whether or not inclusive education actually leads to better outcomes in the long term for children with autism.
The Study
Researchers from the University of Alabama at Birmingham and Johns Hopkins University sought to determine whether the proportion of time spent in an inclusive educational setting, a process indicator of the quality of schooling for children with autism, improves key outcomes. The participants were 484 children and youth educated in special education with a primary diagnosis of autism in the National Longitudinal Transition Study-2 (NLTS2). The NLTS2 is a 10-year study of youth with disabilities who were receiving special education services in public or state-supported special schools. The NLTS2 uses a nationally representative sample of youth in special education who were between the ages of 13 and 16 on December 1, 2000.
The primary exposure of interest in this analysis was the proportion of time the youth spent in a general education classroom. A school program questionnaire was used to collect data on the courses that each student took during the 2003 school year and whether each course was taken in a general education or special education classroom. The proportion of time spent in an inclusive setting was categorized as 0%, 1% to 74%, or 75% to 100% of courses taken in a general education classroom.
Key Outcomes
Three outcomes were assessed in the study’s analysis: (1) not dropping out of high school, (2) any college attendance, and (3) a cognitive functional scale. Youth were coded as not dropping out if the parent reported that they graduated, received a certificate or General Educational Development certificate, or were still in high school at the time of data collection. Any college attendance was based on parent report of whether the youth attended any type of postsecondary school in the previous 2 years, including postsecondary classes to earn a high school degree, a 2-year or 4-year college, or postsecondary vocational school. The functional cognitive scale measured a combination of parent-reported cognitive, sensory, and motor skills used in performing daily activities (such as counting change). Parents rated their child on a scale of 1 (“not at all well”) to 4 (“very well”) for each of these skills. The rating for each skill was added to create the functional cognitive scale, which ranged from 4 (not at all well for any of the skills) to 16 (very well for all of the skills).
Compared with children with autism who were not educated in an inclusive setting, children with autism who spent 75% to 100% of their time in a general education classroom were no more likely to attend college, not drop out of high school, or have an improved functional cognitive score after controlling for key confounders. The researchers state that “In general, our analyses suggest that inclusivity does not improve educational or functional outcomes for children with autism.”  They also note that although the link between inclusivity and outcome remains weak, “inclusive education” that is well implemented and supported might have substantial benefits. Recommendations for further research include investigation of educational and functional outcomes from data on large samples of children in real-world settings. There is also a need for developing future indicators to measure the “quality” of special education for children with autism. This includes a careful description of the learning environment and experiences within and between communities as well as key measures specific to the characteristics and education of children with autism. The authors conclude that the study illustrates the challenges of understanding the effect of real-world services and treatments and that a “A fuller understanding of inclusivity and other potential measures of educational quality may have to wait for better data and methods.”
Foster, E. M., & Pearson, E. (2012). Inclusivity an Indicator of Quality of Care for Children With Autism in Special Education? Pediatrics, 130, S179-S184. DOI: 10.1542/peds.2012-0900P
Lee A. Wilkinson, PhD is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist.  Dr. Wilkinson 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. He is also a university educator and trainer and has published widely on the topic of autism spectrum disorders both in the US and internationally. 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 on the Autism Spectrum: A Self-Help Guide Using CBT. He 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).

Thursday, November 1, 2012

What You Can Learn From My AS Daughter

  What You Can Learn From 
My AS Daughter
Tricia Johnson
 Freelance Writer/Home-school Mom

  • To have grace and patience.  What a blessing people are when they simply accept my daughter for who she is and not put the usual social expectations upon her!  What a blessing when people don't pressure her to do things she's uncomfortable with just because there is some expected response to a given situation.  She is very adept at picking out those people who aren't labeling her or putting unreasonable expectations upon her. She trusts them and it shows.  Now, after observing her interactions with people, I have come to trust her judgment when it comes to other people.  If she doesn’t trust them, neither do I and I support her withdrawal from them.  I can't explain it, but we can learn patience and grace from it.  I trust her judgment far more than I trust yours.
  • To listen.  Listening is vital to an ASD child and I have learned to listen. I listen as though Mickey Mouse is not a taboo subject for a teenage girl.  Listening is rare in our society.  Listening is a gift.  Gladly give the gift of listening.  Spending time with an AS child will teach you to listen.
  • To not judge.  Not all of us fit into the expected norms.  We are all different, but because society has placed certain expectations on us, we tend to conform to those expectations so as not to make waves.  ASD kids simply can't conform like you can, so they are labeled "different" and even sometimes "abnormal."  They make waves even though they have no intention of making any waves.  They make waves just by the nature of who they are. If the world around my daughter would stop with their expectations and judgments, my daughter would not have to make as many waves.
  • To not overreact.  My daughter has been thoroughly confused on many occasions because people have overreacted to something she says or does.  We have seen overreactions to good things and bad things.  Both are just as confusing to my daughter.  She doesn't understand the "hype" when people overreact because she doesn't understand the reason for the hype in the first place.To stop generalizing and putting people into categories.  Spending time with my AS daughter will show you that each and every individual is unique, does not fit into any box or category you might want to create for them and should be treated like they are as unique as they really are!
  • To mean what you say and say what you mean.  I never have to repeat myself to my daughter, and she never goes back and changes anything she says.  She means what she says and she says what she means and, in my heart, I honestly hope that this wonderful characteristic is NOT the result of her ASD.  When I do find myself repeating things to her, she quietly points out that I already told her that.  If she says "No" to something, I never have to ask her if she's sure; she speaks her mind the first time with no hesitation.  It is very rare to find a person who knows their own mind and isn't afraid to speak it.
  • That you need to take time to pet the cat.  She spends time petting her cat every day, even during school hours because petting the cat is so incredibly important. 
  • That you need to break away from the world's expectations and dare to be yourself.
  • To have confidence in yourself.  While my AS daughter might not describe herself as full of confidence, she is full of confidence and she carries herself with grace and respect.  She has confidence to be herself and the determination to stick to it. 

Monday, October 1, 2012

Best Practice Review: Children’s Communication Checklist (CCC-2)

Best Practice Review: CCC-2

As a group, higher functioning students with autism spectrum disorders (ASD) tend to demonstrate strength in formal language, but a weakness is pragmatic and social skills. As a result, they often fail to qualify for speech-language services because they present strong verbal skills and large vocabularies, and score well on formal language assessments. Nevertheless, significant and severe deficits in the ability to communicate and interact with others can limit their participation in mainstream academic settings and community activities. Moreover, pragmatic deficits tend to become even more obvious and problematic as social and educational demands increase with age. Assessments to identify pragmatic language deficits are not as well developed as tests of language fundamentals. Although there are few standard measures available to assess these skills in higher functioning children with ASD, the Children’s Communication Checklist (CCC-2) is a promising third party checklist that can be used in screening and identification of pragmatic language problems.
The Children’s Communication Checklist (CCC-2) is a measure designed to assess the communication skills of children 4 to 16.11 years of age. The purposes of the CCC-2 are the identification of pragmatic language impairment, screening of receptive and expressive language skills, and assistance in screening for ASD. The CCC-2 has shown utility in identifying children who may require further assessment for an autism spectrum disorder (ASD). Initially developed in the United Kingdom, the CCC-2 has been adapted for use in the United States (Bishop, 2006). A Caregiver Response Form is completed by an adult who has regular contact with the child, usually a parent, teacher, therapist, or other professional. The CCC-2 consists of 70 items that are divided into 10 scales, each with 7 items. The first 4 scales focus on specific aspects of language and communications skills (content and form). The next 4 scales assess the pragmatic aspects of communication. The last 2 scales measure behaviors that are usually impaired in children with ASDs. The respondent rates the frequency of the communication behavior described in each item from 0 (less than once a week or never) to 3 (several times a day or always). Interpretation is based on a General Communication Composite (GCC) and the Social Interaction Difference Index (SIDI). A significantly depressed communicative competence score, coupled with a score of less than 11 on the SIDI, suggests a profile of ASD and the need for further evaluation. The CCC-2 reports a sensitivity value of .89 and a specificity value of .97 for identifying children with autistic symptomatology and pragmatic social impairment (Bishop, 2006). Previous versions of the CCC-2 have been strongly associated with the ADI-R total score and ICD-10 diagnostic criteria.

The CCC-2 appears to be a well-constructed instrument that has both face validity and reliability to achieve its stated purpose of assisting in identifying children with language and communication problems, especially in the area of pragmatic communication skills. In a recent study (Volden & Phillips, 2010), the CCC–2 was found to be a more sensitive tool than the Test of Pragmatic Language (TOPL) for identifying pragmatic language impairment in high-functioning speakers with ASD who have structural language and nonverbal cognitive scores within typical limits. The CCC-2 also has the advantage of sampling pragmatic skills in the child’s natural environment. In addition to other more comprehensive communication and language assessment tools, the CCC-2 should be a welcome and useful addition as either a screening tool to identify children who are at risk and need additional assessment, or a supplemental tool to other testing.
Bishop, D. V. M. (2006). Children’s Communication Checklist (2nd ed., U.S. ed.). San Antonio, TX: Psychological Corporation.
Volden, J. & Phillips, L. (2010). Measuring pragmatic language in speakers with autism spectrum disorders: Comparing the Children’s Communication Checklist—2 and the Test of Pragmatic Language. American Journal of Speech-Language Pathology, 19, 204–212.

Wednesday, September 19, 2012

Interventions for Adolescents and Young Adults with Autism Spectrum Disorder (ASD)

Although it would seem obvious that children with ASD will eventually transition to adolescence and adulthood, there is a paucity of information about effective interventions for these age groups compared to data for younger children. Even though the core symptoms of ASD (impairments in communication and social interaction and restricted/repetitive behaviors and interests) may improve overtime with intervention for many individuals, some degree of impairment typically remains throughout the lifespan.  Consequently, the focus of intervention/treatment must shift from remediating core deficits in childhood to promoting adaptive behaviors that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes new developmental challenges such as independent living, vocational engagement, post-secondary education, and family support. Unfortunately, there is evidence to suggest that improvements in symptoms and problem behaviors may decrease or end once youth with ASD transition from school-based programs. This is likely due, at least in part, to the termination of services received through the secondary school system upon exiting from high school, as well as the lack of adult services. The lack of services available to help young adults with ASD transition to greater independence has been noted by researchers for a number of years and has become an increasingly important issue as the prevalence of ASD continues to grow and as children identified with ASD reach adolescence and adulthood.
Comparative Effectiveness Review
What are the effects of currently available interventions/treatments on adolescents and young adults with ASD?  To answer this question, researchers at the Vanderbilt Evidence-based Practice Center systematically reviewed evidence on therapies for adolescents and young adults (ages 13 to 30) with autism spectrum disorders (ASD). Their review focused on the outcomes, including harms and adverse effects, of interventions addressing the core symptoms of ASD; common medical and mental health comorbidities occurring with ASD; the attainment of goals toward functional/adult independence; educational and occupational/vocational attainment; quality of life; access to health and other services; and the transitioning process (e.g., process of transitioning to greater independent functioning). Researchers also addressed the effects of interventions on family outcomes including parent distress and satisfaction with interventions.
Of more than 4,500 studies on autism interventions published between 1980 and 2011, only 32 focused on interventions/therapies for individuals ages 13 to 30. Most of the studies available were of poor quality, which may reflect the relative recency of the field. Five studies, primarily of medical interventions, had fair quality. Behavioral, educational, and adaptive/life skills studies were typically small and short term and suggested some potential improvements in social skills and functional behavior. Small studies suggested that vocational programs may increase employment success for some individuals. Few data are available to support the use of medical or allied health interventions in the adolescent and young adult population. The medical studies that have been conducted focused on the use of medications to address specific challenging behaviors, including irritability and aggression, for which effectiveness in this age group is largely unknown and inferred from studies including mostly younger children. However, antipsychotic medications and serotonin reuptake inhibitors were associated with improvements in specific challenging behaviors. Similarly, little evidence supports the use of allied health interventions including facilitated communication.
Despite an increasing population of adolescents and young adults identified with an ASD and the need for effective intervention across the lifespan, very few studies have been conducted to assess treatment approaches for adolescents and young adults with ASD. Moreover, the available research is lacking in scientific rigor. As a result, there is little evidence available for specific treatment approaches in this population; especially for evidence-based approaches to support the transition of youth with ASD to adulthood. In particular, families have little in the way of evidence-based approaches to support interventions capable of optimizing the transition of teens with autism into adulthood. Research is needed across all intervention types on which outcomes to use in future studies. “Overall, there is very little evidence in all areas of care for adolescents and young adults with autism, and it is urgent that more rigorous studies be developed and conducted,” commented Melissa McPheeters, director of Vanderbilt’s Evidence-Based Practice Center and senior author of the report. “There are growing numbers of adolescents and adults with autism in need of substantial support. Without a stronger evidence base, it is very hard to know which interventions will yield the most meaningful outcomes for individuals with autism and their families,” said Zachary Warren of Vanderbilt who also contributed to the report.
Lounds Taylor J, Dove D, Veenstra-VanderWeele J, Sathe NA, McPheeters ML, Jerome RN, Warren Z. Interventions for Adolescents and Young Adults With Autism Spectrum Disorders. Comparative Effectiveness Review No. 65. (Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2007-10065-I.) AHRQ Publication No. 12-EHC063-EF. Rockville, MD: Agency for Healthcare Research and Quality. August 2012. 
The complete report is available at:  
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also the editor of a recent volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.

Saturday, August 11, 2012

Key Learnings of Autism Thought Leaders Interview

Meet author, educator, researcher and autism expert, Dr. Lee A. Wilkinson. In this "Key Learnings of Autism Thought Leaders" Feature Program interview, Dr. Wilkinson describes his efforts in preparing this new "best practices" book.

A best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools continues to the most comprehensive gold standard autism resource available for parents and practitioners. Written by a practicing school psychologist, this authoritative, yet accessible award-winning text provides step-by-step guidance for screening, assessing, and educating children at-risk for autism spectrum disorders (ASD). Grounded in the latest research, special features include illustrative case examples, FAQs, quick reference boxes, glossary, and an index to 50 evidence-based best practice recommendations. It is an essential guide and valuable resource for practitioners in psychology, general and special education, counseling, social work, and for graduate and pre-service students. Parents, advocates, administrators, and attorneys will also find the content informative and helpful. This text is a welcome addition to the reference libraries of all who want to further their understanding of the identification and treatment of school-age children with ASD. Highly readable and comprehensive, this book sets the standard for those working with students with ASD. This book makes also an ideal text or guide for graduate-level training courses in psychology and special education, and has become a widely used resource. 
Autism Spectrum Quarterly calls the book “a landmark contribution destined to become a classic in the field of autism spectrum disorders” and comments, “Dr. Wilkinson has made an enormous contribution to the field by comprehensively and systematically illuminating not only what needs to be done, but also how to go about doing it. The book is exquisitely and meticulously organized, making it an easy-to-access reference guide as well as a comprehensive text book and training manual."
Ally4autism comments, “Dr. Wilkinson has created an outstanding blend of academic research and practical application in a text that is so clearly written it is a pleasure to read for professionals and parents alike. His book concisely illustrates best practices in screening, assessment, treatment and special education services. Through case examples of two children, he demonstrates how these best practices can be put into action. This book fills an important need that has existed for years. Dr. Wilkinson has created an indispensable resource that should definitely be in each school’s professional library.”
A Best Practice Guide... was named the Winner in the Education/Academic category of the 2011 Next Generation Indie Book Awards and honored as an Award-Winning Finalist in the Education/Academic category of the "Best Books 2010 Awards” sponsored by USA Book News. 
A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools is available from Jessica Kingsley Publishers, ISBN: 978-1-84905-811-7 and can be ordered directly from the publisher at and all major booksellers, including  The book is available in both print and eBook formats.

Saturday, July 21, 2012

Rise in autism related to changes in diagnosis, New study suggests

Over the past 10 years the prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 88 children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade. What are the reasons for this dramatic increase in the prevalence of ASD? A new study suggests that the rise in the number of cases of autism may be related to changes to autism diagnostic criteria.

The criteria for assessing autism has changed over the last 20 years resulting in a broadening of autism diagnoses and the identification of cases that would not have been diagnosed by using older criteria. The current study published online in the Journal of Autism and Developmental Disorders re-examined diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Clinicians in the original study used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic.”  After applying current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, sixty-four (59 %) of the 108 originally “Diagnosed Not Autistic” met the current ASD case definition, while those who were found to have autism in the 1980s study continued to qualify for the diagnosis using the current criteria. The average IQ estimate in the newly identified group was also significantly lower than in the original group. Current diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The researchers conclude, “The results of this study demonstrate a significant effect on ASD case status attributable to changing ASD criteria, particularly with regard to individuals with intellectual impairment,” They also comment, “An important caveat, however, is that we were unable to determine whether it was the broadening of the criteria themselves, or the interpretation of the criteria, which lead to this effect.”

The current study supports the theory that the rise in the number of cases of autism may be related to changes in how the disorder is diagnosed. Another aspect of the autism landscape that has changed over the past 20 years is an increase in the awareness of autism among the general public as well as healthcare professionals. While recent findings suggest that at least a portion of the increase in prevalence can be attributed to these factors, they cannot alone explain the dramatic rise in autism prevalence. According to Autism Speaks, genetic vulnerabilities and interaction with environmental factors are likely contributors to the increase in prevalence. 

Miller, J. S., Bilder, D., Coon, H., Pinborough-Zimmerman, J., Jenson, W., Rice, C. E., Fombonne, E., Pingree, C. B., and Ritvo, E., et al. (2012). Autism spectrum disorder reclassified: A second look at the 1980s Utah/UCLA Autism Epidemiologic Study. Journal of Autism and Developmental Disorders. DOI: 10.1007/s10803-012-1566-0
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

Friday, July 6, 2012

Special Needs Students Bullied More Than Others

Students with special needs continue to face a number of challenges in our nations’ schools and communities. A study published in the Journal of School Psychology found that students receiving special education services for behavioral disorders and those with more noticeable disabilities are not only more likely to be bullied than their general education peers, but are more likely to engage in bullying behavior themselves. Participants in the study were 816 students, 9 to 16 years of age, from nine Midwestern elementary and middle schools in one school district. From this total group, 686 were not receiving special education services (categorized as “no disability”), and 130 were receiving special education services (categorized as “observable disability,” “non-observable disability,” and “behavioral disability”). Data on students’ involvement in bullying, office referrals, and prosocial behavior were collected. Self-report measures were used to assess students’ experiences with bullying and victimization and how often students engaged in various aggressive and prosocial behaviors.
The results indicated that students with behavioral disorders reported the highest levels of bullying others and being bullied themselves. The study also found that students with observable disabilities (e.g.., language impairments, hearing impairments, and mild mentally handicapped) were more likely to bully others and to be victimized compared with students in general education.  As the authors comment, “The observable nature of the disability makes it easy to identify those students as individuals with disabilities, which may place them at a greater risk for being the easy target of bullying. Being frustrated with the experience of victimization, those students might engage in bullying behavior as a form of revenge.”
The study also found that students with non-observable disabilities, such as a learning disability, reported similar levels of bullying and victimization as students without disabilities. They also reported significantly less victimization compared with students with more outward behavioral disabilities. While both boys and girls engaged in bullying, there was no significant gender difference in both general education and special education students when it came to the behavior. Although fifth grade students in general education reported much more victimization than sixth-, seventh-, eighth- and ninth-graders, there was no difference for students in special education.

What are the implications of this study? The authors offer several suggestions for school-based bullying prevention and intervention programming. For example, anti-bullying interventions emphasizing prosocial skills should be implemented for students, regardless of their ability. Students in general education could help the process by serving as prosocial role models for students with disabilities. Teachers may also provide reinforcement for prosocial behavior or assign students in general education with students in special education in small groups to work on class projects together to promote positive interaction. For students with both behavioral and observable disabilities, providing support and teaching strategies to cope with peer victimization are important. Helping students with observable disabilities become better integrated into general education classes may help prevent them from being bullied. "Programming should be consistently implemented across general and special education, should occur in each grade and should be part of an inclusive curriculum," the authors recommend. "A culture of respect, tolerance and acceptance is our only hope for reducing bullying among all school-aged youth."
Swearer, S., Wang, C., Maag, J. W., Siebecker, A. B., & Frerichs, L. J. (2012). Understanding the bullying dynamic among students in special and general education. Journal of School Psychology, 50, 503–520

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