Experiences of Families of Individuals with Intellectual Disability and Psychiatric Disorder

Caring for individuals with intellectual disability often results in stressful experiences for family caregivers, even leading to crisis in some cases. This paper uses the Brief Family Distress Scale (BFDS) to assess the subjective experience of crisis in a clinical sample of 29 families of individuals with intellectual disability and psychiatric disorder. Our analyses determined that 58% of the families rated themselves as 6 or above on the BFDS, indicative of approaching crisis or worse. An analysis of the BFDS’ correlation with related constructs and stressors, and families’ need for certain resources and services are further discussed

Perceived self-efficacy in parents of adolescents and adults with Autism Spectrum Disorder

Many parents of adolescents and adults with Autism Spectrum Disorder (ASD) experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12-25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with ASD across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.This research was funded by the Canadian Institutes of Health Research (MOP 102677). Dr. Weiss is supported by the Chair in ASD Treatment and Care Research (Canadian Institutes of Health Research #284208 in partnership with NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada, and Health Canada)

Direct and Indirect Psychosocial Outcomes for Children with Autism Spectrum Disorder and their Parents Following a Parent-involved Social Skills Group Intervention

Objective: This study examined the direct and indirect outcomes of a social skills group intervention for children with high functioning autism spectrum disorders and their parents. Method: Thirty-five children and their parents participated in_the program evaluation. Children and parents completed measures of child social skills and problem behaviors. Children reported on their self-concept, and parents reported on their psychological acceptance and empowerment. Results: Results indicate significant increases in overall child social skills according to parent and child report, in child general self- worth, and in parent service empowerment and psychological acceptance. Conclusion: While past program evaluations of social skills groups highlight changes in social competence, taking a broader perspective on the types of positive outcomes suggests potential benefits for both child and parent

Child, parent, and service predictors of psychotropic polypharmacy among adolescents and young adults with an autism spectrum disorder

Objectives: This study examined the child, parent, and service factors associated with polypharmacy in adolescents and young adults with ASD. Methods: As part of an online survey examining health service utilization patterns among individuals with ASD, parents provided demographic and clinical information pertaining to their child. This included information on current medication use, as well as information on clinical services received, clinical history, and parent wellbeing. Analyses examined the bivariate association between individual child, parent, and service variables and polypharmacy. Variables significantly associated with polypharmacy were included in a multiple variable logistic regression. Results: Of the 363 participants sampled, approximately one quarter were receiving two or more psychotropic drugs concurrently. The child’s psychiatric co-morbidity, history of hurting others, therapy use, and parent burden were predictors of polypharmacy. Conclusion: Adolescents and young adults with ASD are a highly medicated population with multiple factors associated with psychotropic polypharmacy. While there may be circumstances where polypharmacy is necessary, a richer understanding of what predicts polypharmacy may lead to targeted interventions to better support these individuals and their families. Findings also highlight the need to support families of children with ASD prescribed multiple psychotropic medications.The Canadian Institutes of Health Research (funding reference number 102677) and the Centre for Addiction and Mental Health Postdoctoral Fellowship Award

Defining crisis in families of individuals with autism spectrum disorders

DOI: 10.1177/1362361313508024Parents of children diagnosed with autism spectrum disorder often report higher levels of depression, anxiety, and mental health–related issues. The combination of stressors and family adjustment difficulties can cause distress which may develop into a crisis. Understanding crisis in the family is important to mental health practice since it can serve as a guide in delivering service to at-risk families. This study investigated the subjective experience of crisis in 155 mothers of children diagnosed with autism spectrum disorder. Thematic analysis revealed that crisis is characterized by factors influencing four major areas: demands, internal capabilities, external resources, and subjective appraisal. Understanding what crisis means to families of individuals with autism spectrum disorder can help inform effective preventative and crisis services.Chair in Autism Spectrum Disorders Treatment and Care Research (Canadian Institute for Health Research, NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada, and Health Canada), the Spectrum of Hope Autism Foundation, and Ontario Mental Health Foundatio

A Review of Emergency Visits made by Youth and Adults with Autism Spectrum Disorder from the Parent Perspective

Purpose: Past research has shown individuals with autism spectrum disorder (ASD) visit hospital emergency departments (ED) at high rates. In order to assist individuals with ASD, their families and health care providers to improve ED care, it is important to understand these encounters in greater detail. This study aimed to provide a descriptive summary of the ED experiences of adolescents and adults with ASD, from the perspective of their families. Design/Methodology/Approach: A subset of data from a larger prospective cohort study was used. Specifically, 46 parents of adolescents and adults with ASD provided details concerning 49 ED visits over a 12-month period. Findings: Results suggest a range of presentations requiring ED use, and also diverse profiles of those with ASD who visited the ED, in terms of age, gender, and ASD severity. While overall degree of satisfaction with care received in the ED was high, parents provided recommendations to improve the ED experiences for their family members with ASD. Originality/value: This is the first study to provide detailed accounts of ED visits from the perspective of parents of adolescents and adults with ASD. Families play an important role in the lives of individuals with ASD across the lifespan and it is important to include their perspective to improve hospital- based care for those with ASD

Plugged in: Electronics use in youth and young adults with Autism Spectrum Disorder

Although electronic technology currently plays an integral role for most youth, there are growing concerns of its excessive and compulsive use. The current study documents patterns and impact of electronics use in individuals with Autism Spectrum Disorder (ASD) compared to typically developing peers. Participants included 172 parents of typically developing individuals and 139 parents of individuals with an ASD diagnosis, ranging in age from 6 to 21 years. Parents completed an online survey of demographics and the frequency, duration, and problematic patterns of electronics use in their youth and young adults. Individuals with ASD were reported to use certain electronics more often in the last month and on an average day, and had greater compulsive Internet and video game use than individuals without ASD. Across both samples, males used video games more often than females. Compared to parents of individuals without ASD, parents of individuals with ASD were significantly more likely to report that electronics use was currently having a negative impact. The implications of problematic electronics use for individuals with ASD are discussed

Suicide Behavior in Persons with Intellectual Disability

Suicide is one of the leading causes of death today in the Western world, and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability, some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and show that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should, therefore, be aware of and assess for this behavior. Sadness, or depression, are symptoms that could indicate later suicidal behavior

“Why Are You Here? Can’t You Cope at Home?” The Psychiatric Crisis of People With Intellectual Disabilities and the Community’s Response

Introduction: Individuals with intellectual disability (ID) are high users of emergency mental health services and can experience stigmatization in these circumstances. The purpose of the study was to examine the experiences of people with ID living in the community who interact with emergency services as a result of a psychiatric crisis, from the perspective of individuals with ID and their caregivers. Methods: In this qualitative study, we interviewed 12 individuals with ID, four family members and five direct support staff who visited emergency departments (EDs) during psychiatric crises. Thematic analyses were conducted on interview transcripts. Results: Four themes emerged: ID and mental health stigma, stigma preventing people from accessing services, lack of support, and concern regarding care planning. Participants reported feeling either dismissed or disrespected by emergency personnel, that staff are ill-prepared to support this population, and that they experience poor transitions between hospital and community.Conclusions: Work needs to be done to reduce stigma experienced by those with ID and mental health issues when using emergency services. Education and training should target individuals, caregivers, community providers, and emergency personnel

The Relationship Between Social Acceptance, Problem Behaviours, and Social Skills as Perceived by Youth with Autism Spectrum Disorders

The current study examined the relationships among social acceptance and perceived social skills, internalizing and externalizing behaviours, and friendships in youth with autism spectrum disorders. Forty participants aged 6 to 14 years self-reported on all of the above-mentioned variables except friendships. Social acceptance was found to be positively correlated with social skills and number of friends in school, and negatively correlated with internalizing behaviours. This study highlights the possible pathways to positive feelings of social acceptance in youth with autism spectrum disorders