Wednesday, April 16, 2014

Autism: Parent Acceptance & Empowerment

Parents are often overwhelmed by the challenges presented by a child with an autism spectrum disorder (ASD).  Research has shown that parents of children with ASD exhibit a characteristic stress profile which includes anxiety related to the child's uneven intellectual profiles, deficits in social relatedness, disruptive and maladaptive behaviors (internalizing and externalizing problems) and long-term care concerns. Among these stressors, the child’s maladaptive behavior profile is most reliably linked to parent stress. Studies also indicate that raising children with ASD is associated with higher levels of parenting stress and psychological distress than parenting typi­cally developing children, children with a physical disability, or children with developmental delays without ASD. Mothers, in particular, appear to face unique challenges related to the characteristics of ASD. 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.
Increased attention is now being given to the psychological well-being of parents of individuals with ASD. A number of studies have exam­ined the factors that can influence the impact of children’s problem behavior on parent mental health. A recent study appearing in the Journal Autism examined the relationships between child problem behavior, parent mental health problems, psychological acceptance (e.g., accepting and not being adversely influenced by negative emotions and thoughts that a parent may have about their child), and parent empowerment (e.g., actively attempting to change or eliminate potentially stressful events through the application of knowledge and skills).
The participants included 228 parents of children diagnosed with ASD aged 6–21 years old (81.5% boys; mean age = 11.80, SD = 3.58). Children’s diagnoses, as reported by parents, included Asperger Syndrome (54%), high functioning autism (14%), PDD-NOS (13%), and autism (19%).Roughly 77% of these children were placed in full-inclusion classrooms. Most parents were female (93%) and the child’s biological parent (93%). Parents completed an online survey assessing social competence and problem behaviors, severity of autistic traits, negative life events, psychological acceptance, family empowerment, and psychological distress.
The researchers found that the more positive parents’ psy­chological acceptance and empowerment, the less they reported severe mental health problems. Although greater parent empowerment was associated with fewer parent mental health problems, psychological acceptance had the greatest impact on parent mental health problems, after controlling for ASD symptomatology, negative life events, parent and child gender, and child age. As child problem behavior increased, parent psychological acceptance decreased, resulting in an increase in parent mental health problems. These results suggest that problems that are persistent, stressful and not easily managed via an active problem solving approach may negatively impact the individual’s process of psy­chological acceptance, which in turn can lead to reduced adjustment.
This study has several important implications. The relatively chronic nature of behavior problems in children with ASD may explain why acceptance is a more significant psychological construct for explaining parent mental health than is empowerment. If difficulties are man­ageable and support readily available, then an active, problem-focused coping style would be related to improved parent adjustment. However, for children with ASD who exhibit more persistent behavior problems, or for highly stressed and frustrated parents, a problem-focused process may not be enough to ensure positive parent adjustment. If problems are less controllable and/or support less accessible, it may be impossible for parents to focus exclusively on trying to change or avoid their current experience. The authors comment, “In these situations, parents need a different coping strategy, one that allows them to acknowledge their current experience without trying to change it or avoid it.”  Therefore, it may be critically important to understand and evaluate the situation of the family, and offer parents both types of coping skills (acceptance and empowerment) for use across different situations.
Importantly, this study supports the exploration of accept­ance and mindfulness-based interventions as effective approaches for parents of children with ASD and underscores the importance of considering the parent psychological experience when developing treatments for child problem behavior. The authors conclude, “Child-focused therapy should not focus exclu­sively on the child. At the same time that we provide parents with skills and supports to improve their children’s experience, we must also invest in helping parents to deal with their own emotions and coping strategies.” Further research is needed to investigate the effectiveness of such interventions, and other parent-focused therapies, with con­trolled designs and large, diverse samples of parents.
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. DOI: 10.1177/1362361311422708
The online version of this article can be found 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 text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.

Tuesday, April 8, 2014

Girls with ASD Face High Risk for Depression

The U.S. Centers for Disease Control and Prevention (CDC) now estimates that 1 in 68 eight year-old children in the US has an autism spectrum disorder (ASD). Prevalence estimates of ASD are significantly higher among boys than among girls. According to the CDC, approximately one in 42 boys and one in 189 girls were identified as having ASD. Studies also suggest that while boys are being referred for evaluation and identified in greater numbers in our schools, this is not the case for girls. Girls are also diagnosed with ASD at later ages compared to boys. This “gender gap” raises serious questions because many females with ASD may be overlooked and not receive the appropriate supports and services. 

                                   Girls with ASD
Gender role socialization is critical to understanding why girls with ASD might be underidentified in the general population. Since females are socialized differently, ASD may not manifest in the same way as typical male behavioral pattern. For example, girls might not come to the attention of parents and teachers because of better coping mechanisms and the ability to “disappear” in large groups. Girls on the higher end of the spectrum also have fewer special interests, better superficial social skills, better language and communication skills, and less hyperactivity and aggression than boys. Likewise, girls are more likely than boys to be guided and protected by same gender peers and to have special interests that appear to be more gender appropriate. These characteristics lessen the probability of a girl being identified as having impaired social skills, the core symptom of ASD.  In fact, it may be a qualitative difference in social connectedness and reciprocity that differentiates the genders. As a result, parents, teachers, and clinicians may not observe the obvious characteristics associated with the male prototype of higher functioning ASD. Over reliance on the male model with regard to diagnostic criteria might also contribute to a gender “bias” and underdiagnosis of girls. For example, clinical instruments tend to exclude symptoms and behaviors that may be more typical of females with autism spectrum disorders.
Unfortunately, the sex differences in the ASD phenotype continue to be poorly understood. As a result, there has been relatively little research on girls with ASD. Moreover, the extant findings are complex and often difficult to interpret. While the gender gap in ASD has yet to be empirically investigated, if there is a gender difference in the autism phenotype, then clinical and educational interventions based largely on research with boys may be inappropriate. As a result, girls may receive less than optimal academic and behavioral interventions. Moreover, the consequences of a missed or late diagnosis can result in social isolation, peer rejection, lowered grades, and a greater risk for mental health and behavioral distress such as anxiety and depression during adolescence and adulthood. As a result, there is an urgent need for research to compare girls with ASD to typical boys and girls to more fully comprehend the implications of being a girl with ASD.
In addition to understanding sex differences in ASD symptoms, a clinically significant issue is whether girls with ASD have an elevated risk for affective disorders. Studies indicate that individuals with ASD demonstrate increased internalizing psychopathology relative to typical individuals.  Depression is one of the most common comorbid syndromes observed in individuals with ASD, particularly higher functioning youth.  For example, evaluation of psychiatric comorbidity in young adults with ASD revealed that 70% had experienced at least one episode of major depression and 50% reported recurrent major depression. Although typical boys and girls show similar levels of depression in childhood, the risk for internalizing disorders in girls increases dramatically in adolescence. Therefore, girls with ASD may be at especially high risk for internalizing psychopathology.
A study in the Journal of Autism and Developmental Disorders compared autism and internalizing symptoms in a clinical sample of 8-18 year-old girls (n = 20) and boys (n = 20) with ASD and typically developing girls (n = 19) and boys (n = 17) using clinician-, parent-, and child- report measures. The researchers found that boys and girls were similarly impaired as evidenced by comparable diagnostic and non-diagnostic ASD symptom scores. However, girls with ASD differed markedly from typical girls on symptom measures, indicating that girls with ASD differed from typical girls in terms of language and social abilities. Girls with ASD also appeared to be at greater risk for internalizing psychopathology than boys with ASD and typical girls. In adolescence, girls with ASD had significantly higher parent-reported internalizing scores than boys with ASD and typical girls. This suggests that being female and having a neurodevelopmental disorder may result in an especially high risk of internalizing psychopathology in the teen years.
                                                   Conclusion and Recommendations
Understanding elevated levels of internalizing symptoms in girls with ASD and how to treat comorbid affective symptoms is critical. Developing and implementing cognitive, behavioral and psychotropic interventions to address internalizing symptoms in this high risk population of girls is essential to help improve interpersonal functioning and quality of life, as well as reduce the negative outcomes frequently associated with adolescent depression, including psychiatric hospitalization and suicidal ideation. Girls who are diagnosed with ASD should be screened for internalizing problems and closely monitored for symptom occurrence. Additionally, practitioners should question the presence of ASD in girls referred for internalizing disorders such as anxiety or depression. Best practice recommends that when a girl presents with a combination of social immaturity, restricted interests, limited eye gaze, repetitive behaviors, social isolation, and is viewed as “atypical” or “unusual," the possibility of ASD should be given serious consideration. 

In terms of treatment, cognitive-behavioral strategies have shown promise in addressing anxiety in higher-functioning children with ASD and might be adapted to address depression in this population. Interpersonal therapy techniques have also to be effective in treating typical adolescents with depression. In addition, evidence is accumulating in the empirical literature that social skills interventions are likely to be appropriate for many children and youth with ASD. Commonly used approaches include individual and group social skills training, providing experiences with typically developing peers, and peer-mediated social skills interventions, all targeting the core social and communication domains. In conclusion, the study of girls with ASD represents a critical area for future research. This group appears to be at a significant risk for developing significant affective symptoms in adolescence, indicating the need for increased awareness, screening, identification, and intervention. Lastly, population-based studies are needed to determine to what extent girls with ASD in the “general community” are less impaired and/or under-identified relative to boys.
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 48–59
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. Dr. Wilkinson 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.

Wednesday, April 2, 2014

The Fourth “R” – Teaching Relationship Skills in Our Schools

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 the 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 the social learning as the fourth ‘R’ in our schools. 
Although teaching the fourth R benefits all children, it has the greatest potential to help students with autism spectrum disorders (ASD). Most children with ASD 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. 
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 on the autism spectrum, but also for all children. If we want our children to achieve success socially, we must teach them the social skills they need to be successful in school and in life.
Adapted from:
Wilkinson, L. A.  (Spring, 2012). Relationship -The fourth “R” in our schools. Autism Spectrum Quarterly, 8-10.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also the editor of a recent volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the new book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT.
© Lee A. Wilkinson, PhD

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