MYTime: A Mindfulness and Yoga Program to Promote Health Outcomes in Parents of Children With Autism Spectrum Disorder.

Background: Parenting a child with Autism Spectrum Disorder can be stressful and result in health consequences for the caregivers, a population that is often overlooked and underserved. While mind-body interventions such as mindfulness yoga can help promote positive health outcomes, limited research has explored the impact of such a program on caregivers of children on the autism spectrum. Objective: The primary objective of this pilot study was to evaluate the effects of a 12-week mindfulness yoga program (MYtime) on perceived stress, anxiety, and depression among urban caregivers of children on the autism spectrum. Methods: Twenty-seven parents were randomized into either MYTime (n = 13) or the control group (n = 14). Perceived Stress Scale (PSS) and Depression, Anxiety, and Stress Scale (DASS) were administered. Results: The MYTime group reported lower stress, depression and anxiety while the control group maintained similar scores across pre- and post-assessment. Following 12 weeks of participation the PSS and DASS scores improved by 25% and 49% respectively for parents in the MYTime group. In comparison, PSS scores worsened by 5% and DASS scores improved by 17% for the Control group. Differences in pre-and post-assessment scores were not significant for either group (P > .05). Conclusion: The results from this pilot study indicate that a mindfulness yoga program could be considered among feasible interventions aimed at improving the health of parents of children on the autism spectrum.

Sex and genes, part 2: A biopsychosocial approach to assess and treat challenging sexual behavior in persons with intellectual disabilities including fragile X syndrome and 22q11.2 deletion syndrome.

Individuals with intellectual disabilities (IDs) - and specifically those with genetic disorders - are more prone to medical and psychological challenges that affect their sexual development, experiences, and fertility. In this review paper we first provide an overview of the biopsychosocial (BPS) model and then explain how the model can guide and improve the assessment and treatment of challenging sexual behaviors by persons with IDs. We discuss two genetic conditions - fragile X syndrome and 22q11.2 deletion syndrome - in case studies, showing how the BPS model can be used to assess and treat the sexual problems of individuals with various types of ID. We conclude with BPS-formulated treatment considerations in three key domains: biomedical treatment (e.g., medication side effects; stopping or changing medications), psychological treatment (e.g., providing psychological therapies), and socio-environmental interventions (e.g., providing socio-sexual education and staff training). Together, these treatment interventions can aid clinicians to prevent and/or treat problematic sexual behaviors of people with IDs.

A Peer Mentored Physical Activity Intervention: An Emerging Practice for Autistic College Students.

Many autistic individuals are less fit and have more health problems than their nonautistic peers. These findings suggest a need to develop effective physical activity interventions. Motor skill deficits, lack of motivation, and limited opportunities for physical activity may restrict exercise participation. Peer mentors can help autistic college students increase their physical activity level and fitness. We developed a 10-week peer mentored physical activity program that affords autistic college students the opportunity to act in a self-determined manner in which students are encouraged to engage in preferred activities and self-directed instruction (autonomy), gain skills through access to expert instruction (competence), and engage socially with peers (relatedness). The ability to act with self-determination may increase students' motivation to participate in physical activity. From our pilot study, we learned that autistic college students could improve their cardiorespiratory fitness, flexibility, and upper body muscular endurance as a result of participating in Into Fitness Together. We also learned of three shared themes: students felt that they gained motor competence, improved their health, and felt a sense of belonging. The autistic students spent time with both autistic and nonautistic peers, which fostered this belongingness. Access to movement experts and peer mentors in an individualized program that affords choice in physical activity is a step in the right direction to eliminate the health disparities of autistic young adults. LAY SUMMARY: Why was this program developed?We developed a physical activity program because we saw the need for autistic individuals to benefit from regular physical activity. Motor skill challenges may keep autistic adults from engaging in regular physical activity and from reaping the benefits of improved fitness. Since participating in regular physical activity is important for the health of all individuals, it is important to design programs that address barriers so all people can benefit.What new program was developed?We developed a 10-week physical activity program called Into Fitness Together (IFiT) for autistic college students. The program is unique because it is individualized, tailored to autistic adults, fun, and has a built-in one-to-one peer support system.What did the researchers do?We wanted to learn whether the program had the potential to increase health-related fitness and how autistic college students experienced IFiT. Sixteen autistic college students participated in IFiT. They were paired one-on-one with another college student (known as a peer mentor) who was an expert in exercise science. The pairs worked out together 2.5 hours a week for 10 consecutive weeks. We examined change in participants' fitness levels at the start and end of IFiT. We also interviewed the autistic peers to understand their IFiT experience.What was the result of participating in the program?With regular participation in physical activity, the autistic peers improved their cardiorespiratory fitness levels, muscular endurance, and flexibility by the end of IFiT. There were three main themes that emerged from the interviews. At the end of the program, participants reported (1) greater competence in motor skills and a greater understanding of exercise, (2) improved overall health, and (3) a sense of belonging. Participants said they learned new ways to exercise, how to exercise correctly, and stated that they felt healthy and fit. They also expressed a sense of belonging. Participants stated that they valued their time with their peer mentor not only because the peer mentor shared their expertise in physical activity and exercise, but also because the peers talked about school, hobbies, and life in general. Having ongoing opportunities for regular social interaction was a positive experience for IFiT participants.What are the next steps for program development?This emerging practice article describes a small pilot study performed at one university, thus results cannot be generalized. Also, we did not have data from a comparison group of autistic students who did not participate in the program. Future studies should use a control and comparison group and gather data at multiple institutions.How will these findings help autistic adults now or in the future?There is limited information on interventions focused on physical activity for autistic college students; therefore, our work provides insight into a promising program. Regular physical activity can lead to positive health outcomes, skill acquisation, and participating in IFiT can potentially set the stage for lifelong physical activity.

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.

Deaths among children, adolescents, and young adults with Down syndrome.

BACKGROUND: Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. MATERIALS AND METHODS: In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046 hospitalized individuals with DS (85 died) in three age groups: children (1-9), adolescents (10-19) and young adults (20-29). RESULTS: Most deaths occurred to young adults, while children had the most hospitalizations. Leading causes of death were cardiovascular and pulmonary conditions, and patients who died had longer hospital stays. Proportions of female deaths rose in young adulthood, and disproportionately more African Americans died at each age period. CONCLUSION: Mortality is high among young adults with DS. Special vigilance is needed for individuals with DS who are female, African American and in their 20s.

Sex and genes, part 1: sexuality and Down, Prader-Willi, and Williams syndromes.

Specific genetic syndromes affect individuals' sexual development, experiences, and fertility. Individuals with specific syndromes can also display inappropriate sexual behavior resulting from vulnerabilities presented by their genetic makeup. Using clinical case studies, we discuss the specific impact that Down, Prader-Willi, and Williams syndromes can have on sexual development and behavior. Applying a biopsychosocial approach, we present the primary sexual effects, such as delayed sexual development and infertility. These genetic syndromes are also associated with challenges that are not specifically sexual in nature but that affect sexual expression, such as self-injury, mental health issues, or epilepsy. Medication side effects are also discussed. We conclude with treatment recommendations for individuals with sexual challenges, considering the unique effects of these three syndromes on sexuality.

Chronic stress and health among parents of children with intellectual and developmental disabilities.

PURPOSE OF REVIEW: This article reviews recent studies connecting chronic stress to health outcomes in parents of children with intellectual and developmental disabilities (I/DD). This review is timely owing to the increased rates of certain I/DD conditions and the adverse effects that chronic stressors may have on parental health. RECENT FINDINGS: Although parents raising children with (versus without) I/DD have long reported greater levels of psychological stress, only recently have parental physical health problems been linked to aspects of the child with I/DD. SUMMARY: Chronic stressors can wear down the body, particularly the cardiovascular, immune, and gastrointestinal systems. So far, increased rates of caregiver health problems have been linked to caring for an elderly parent or for a child with recurrent cancer. Parents of children with I/DD also more often encounter severe, chronic stressors, particularly those involving child behavior problems and extreme caregiving need. These child characteristics, especially for older parents or for parents of children with certain conditions (e.g. spina bifida), may adversely affect parental health. More research is needed to explore stress-health connections among parents of children with I/DD, as well as the clinical and policy implications of such findings.