Marisa H. Fisher

Reducing Distress in Mothers of Children With Autism and Other Disabilities: A Randomized Trial

BACKGROUND: Compared with other parents, mothers of children with autism spectrum disorder or other neurodevelopmental disabilities experience more stress, illness, and psychiatric problems. Although the cumulative stress and disease burden of these mothers is exceptionally high, and associated with poorer outcomes in children, policies and practices primarily serve the identified child with disabilities. METHODS: A total of 243 mothers of children with disabilities were consented and randomized into either Mindfulness-Based Stress Reduction (mindfulness practice) or Positive Adult Development (positive psychology practice). Well-trained, supervised peer mentors led 6 weeks of group treatments in 1.5-hour weekly sessions, assessing mothers 6 times before, during, and up to 6 months after treatment. Mothers had children with autism (65%) or other disabilities (35%). At baseline, 85% of this community sample had significantly elevated stress, 48% were clinically depressed, and 41% had anxiety disorders. RESULTS: Using slopes-as-outcomes, mixed random effects models, both treatments led to significant reductions in stress, depression, and anxiety, and improved sleep and life satisfaction, with large effects in depression and anxiety. Mothers in Mindfulness-Based Stress Reduction versus Positive Adult Development had greater improvements in anxiety, depression, sleep, and well-being. Mothers of children with autism spectrum disorder improved less in anxiety, but did not otherwise differ from their counterparts. CONCLUSIONS: Future studies are warranted on how trained mentors and professionals can address the unmet mental health needs of mothers of children with developmental disabilities. Doing so improves maternal well-being and furthers their long-term caregiving of children with complex developmental, physical, and behavioral needs.

Secondary Prevention Efforts at the Middle School Level: An Application of the Behavior Education Program

In this study we examine the impact of the Behavior Education Program (BEP; Hawken, MacLeod, & Rawlings, 2007) with four middle school students who were not responsive to a comprehensive primary prevention program including academic, behavioral and social components. To extend this line of inquiry we (a) conducted a functional behavioral assessment prior to implementing the BEP and (b) employed a changing criterion design to determine if a functional relation could be established between the introduction of the BEP program and changes in student performance. Results suggest this intervention may be effective for students whose challenging behaviors are maintained by attention and escape. However, the variability in scores raises questions and concerns regarding the nature of the behavior change that may have occurred. Additional limitations and future direction are discussed.

Child Abuse Among Children with Disabilities: What We Know and What We Need to Know

Abstract Information concerning abuse and neglect of children with disabilities is scarce, research suffers from definitional and methodological shortcomings, and few studies examine why these children are at an increased risk of abuse. In this chapter, we first discuss general definitional and methodological limitations, specific issues related to the abuse of children with disabilities, and efforts of child abuse researchers to overcome these limitations. We then discuss the prevalence of maltreatment among children with disabilities. Next, we present and apply to children with disabilities an ecological approach to child abuse, showing how certain societal, familial, parental, and child characteristics function to increase these childrens risk of abuse and neglect. We conclude by describing four research directions for better understanding the abuse of children with disabilities.

Vulnerability and Experiences Related to Social Victimization Among Individuals With Intellectual and Developmental Disabilities

Compared to adults without disabilities, individuals with intellectual and developmental disabilities (IDD) are more likely to experience social victimization. This study examined responses of caregivers of 146 adults with IDD on questionnaires concerning demographics and behavioral characteristics as well as a newly developed Social Vulnerability Questionnaire (SVQ). Demographic and behavioral characteristics were related to risk factors of vulnerability. Caregivers provided examples of victimization experienced by individuals with IDD throughout the life span. Examples related to money/theft, teasing/persuasion, and abuse. Findings indicate that although individuals who are higher functioning are more aware of vulnerable situations, they still experience victimization at rates similar to those who are less able to detect risk. Those who were rated as more vulnerable displayed more externalizing behavior problems. Implications for research and practice are discussed; research is needed to understand the risk factors of victimization and interventions are needed to teach self-protection skills.

Teaching Young Adults with Disabilities to Respond Appropriately to Lures from Strangers.

We taught 5 adults with mild intellectual disabilities to respond appropriately to lures from strangers. Skills were taught in the classroom first and then in situ. Before training, participants did not walk away from confederate strangers who tried to lure them away. Participants demonstrated appropriate responses during classroom and in situ training, although performance during assessments was somewhat inconsistent. Appropriate responses were observed during weekly maintenance probes and at follow-up assessments for up to 3 months after training.

Let’s talk about it: Peer victimization experiences as reported by adolescents with autism spectrum disorder

Individuals with autism spectrum disorder experience high rates of peer victimization; yet, their personal experiences and perceptions of such victimization are not well understood. In this qualitative investigation, responses to questions about bullying and teasing were examined to gain insight into the perception of peer victimization as reported by adolescents with autism spectrum disorder. While the majority of participants provided examples of peer victimization, their situations differed from items typically assessed on bullying questionnaires. Participants were also able to provide explanations for why they believe they are targets and descriptions of their reactions to bullying. Findings from the interviews are used to provide suggestions for the development of more informative bullying assessments and prevention programs for students with autism spectrum disorder.

Addressing social skills deficits in adults with Williams syndrome

BACKGROUND Individuals with Williams syndrome (WS) are hypersocial; yet, they experience social difficulties and trouble with relationships. This report summarizes findings from three studies examining the social functioning of adults with WS and the feasibility of a social skills training program for adults with WS (SSTP-WS) through the examination of performance on initial lesson plans. METHOD Study 1: 114 parents of adults with WS completed the Social Responsiveness Scale-2. Study 2: 10 adults with WS and 12 of their parents participated in focus groups to further describe the deficits identified in Study 1 and to discuss a SSTP-WS. Study 3: 30 adults with WS were randomly assigned to 2 lessons on either conversations or relationships and pre-post change in social skills knowledge was assessed. RESULTS Study 1 indicates adults with WS experience severe social impairments in social cognition, and mild-moderate impairments in social awareness and social communication. Qualitative results in Study 2 indicate a SSTP-WS should address conversation skills and relationships. In Study 3, participants showed gains in social skills knowledge following completion of lessons. IMPLICATIONS A SSTP-WS may be beneficial for adults with WS. Future research should describe the social needs of individuals with WS at different ages and should further develop a SSTP-WS.

Experiences of Bullying for Individuals With Williams Syndrome

ABSTRACT Background: Individuals with intellectual disability experience high rates of bullying, but it is not known how people with specific syndromes, such as Williams syndrome (WS), experience and respond to bullying. Given their behavioral profile, including hypersociability and heightened anxiety, and their risk for experiencing other forms of victimization, it is important to examine whether individuals with WS experience bullying and to determine how they respond. Method: Fifteen individuals with (WS) between the ages of 12 and 37 participated in semi-structured interviews about their understanding of bullying, their experiences of bullying, and how they responded. Interviews were transcribed and coded for themes related to bullying understanding, experiences, and responses. Results: Participants were able to describe bullying, often referring to bullies as mean people who want to hurt others. Individuals with WS then reported that they experienced several forms of bullying, including relational, verbal, and physical bullying. In response to bullying, the primary theme that emerged was related to self-advocacy; the participants also provided suggestions about being proud of who you are, and feeling secure within yourself about your strengths and weaknesses. Conclusions: Individuals with WS experience bullying but also stand up for themselves in the face of bullying. To inform intervention, future research should further examine the bullying experiences of individuals with WS and how they compare to individuals with other intellectual disability conditions.

Literature analysis to determine the inclusion of children with disabilities in abuse interventions.

To the Editor: Children with disabilities are an understudied population in the field of child abuse. Sullivan and Knutson (2000) determined that, compared to children without disabilities, children with disabilities were maltreated at higher rates (31% vs. 9%) and more often experienced multiple forms of maltreatment (63% vs. 54.9%) and recurring rather than single episodes of maltreatment (71% vs. 29%). Given that family members were most often the perpetrator (from 53% to 92% of perpetrators, depending on abuse type), success of child abuse prevention/intervention programs should be examined for families with children with disabilities. In 2005, Kendall-Tackett, Lyon, Taliaferro and Little stated that children with disabilities rarely receive protection services because providers are unaware of the increased risk and the specialized needs of this population. In response, I examined research published in 3 journals during the 10-year period from 1998 to 2007. Included were all studies assessing prevention programs for at-risk families or intervention programs for children who had been maltreated by a family member; each study was coded for whether children with disabilities were included in the study sample. Disabilities included children having prenatal drug-exposure; fetal alcohol effects/syndrome; physical, developmental, or learning disabilities; or if the child was born preterm or of low birthweight. Of the 28 empirical studies examining prevention or intervention programs, only 7 included children with disabilities in the participant sample. An additional 5 mentioned disability as an abuse risk factor. Eight were prevention studies, four were intervention programs. It is concerning that so few abuse prevention/intervention programs include children with disabilities. Also, while many programs used risk assessments, disability status was not mentioned or considered; even while risk factors for child maltreatment may occur at greater rates among families with children with (versus without) disabilities (Fisher, Hodapp, & Dykens, 2008). Prevention studies need to be expanded to include families of children with disabilities. Beyond typical prevention programs, these families may need specialized services to teach appropriate parenting skills and responses to disability-related behaviors. Behavior plans written into the child’s Individualized Family Service Plan (IFSP) could also help parents handle a child’s difficult behaviors. Finally, it would also be helpful to design programs to educate children with disabilities about inappropriate interactions with others. This literature analysis highlights the need to evaluate the effectiveness of child abuse prevention and intervention programs for families with children with disabilities. Given the high rates of abuse experienced by this vulnerable population, more research should focus on specific ways to protect children with disabilities. Families of children with disabilities would benefit from prevention and intervention programs designed to teach them to raise a child with special needs, respond to challenging behavior, and seek help from appropriate sources. Programs could also help reduce stress and increase competency among parents of children with disabilities.

Adolescents with Intellectual Disabilities

This chapter addresses the experiences of individuals with intellectual disabilities as they transition from childhood to adult life. We first provide a brief overview of intellectual disability, before describing issues related to adolescents with intellectual disability in the areas of health, mental health, socialization, education, and post-school engagement. We conclude by considering the experiences of an adolescent with intellectual disability in the context of the family. Throughout, we consider the transitions experienced by individuals with intellectual disabilities during adolescence—in some ways parallel to the experiences of their typical peers, and in some ways markedly different.