The Physical and Mental Health of Middle Aged and Older Adults on the Autism Spectrum and the Impact of Intellectual Disability.

BACKGROUND: People on the autism spectrum may have more physical and mental health conditions in midlife and old age compared to the general population. This study describes the physical and mental health of a unique sample of all middle aged and older Wisconsin Medicaid beneficiaries with an autism spectrum disorder diagnosis and tests differences between those with and without co-occurring intellectual disability. METHOD: Using de-identified Medicaid claims data for 143 adults with a recorded autism spectrum disorder diagnosis aged 40-88 years with any Wisconsin Medicaid claims in 2012 through 2015, we extracted diagnoses for physical and mental health conditions from fee-for-service claims. Logistic regression analyses-controlling for sex, race, and age-compared the adjusted odds of physical and mental health conditions for those with and without intellectual disability. RESULTS: Many physical and mental health conditions, including immune conditions (70.6%), cardiovascular disease (49.0%) and its risk factors (46.2%), sleep disorders (85.3%), gastrointestinal disorders (49.7%), neurologic conditions (55.9%), and psychiatric disorders (72.0%) were highly prevalent in our full sample. Although there were many similarities between those individuals with and without co-occurring intellectual disability, middle aged and older adults on the autism spectrum had higher prevalence of epilepsy and lower prevalence of depression and anxiety compared to those without co-occurring intellectual disability. CONCLUSIONS: Findings suggest that people on the autism spectrum have a high prevalence of physical and mental health conditions in midlife and old age, regardless of intellectual disability status.

Autism spectrum disorder and the science of social work: A grand challenge for social work research.

The social work profession has not yet taken a leadership role in addressing the myriad of challenges that individuals on the autism spectrum encounter across the lifespan. In this essay, we argue that social workers are well equipped to engage in research and practice aimed at promoting full and meaningful inclusion in society, as well as social and economic justice, for individuals on the autism spectrum. We highlight short- and long-term goals that provide the social work profession with a framework to engage in research, practice, education, and advocacy aimed at supporting individuals on the autism spectrum and their families.

A matter of time: The necessity of temporal language in research on health conditions that present with autism spectrum disorder.

Relatively consistent findings from recent studies using population-level data identify heightened physical and psychiatric morbidity in autistic people compared to the general population. Health problems that commonly present with autism spectrum disorder (ASD) are generally discussed in the literature as "co-occurring" or "comorbid" regardless of their known or hypothesized causal mechanisms. In this commentary, we introduce a new temporally focused terminology to describe health conditions that present with ASD. Emphasizing the temporal development of health conditions in research will help the field understand whether conditions are (1) "truly co-occurring" (share an etiologic origin with ASD in utero and are a defining characteristic of a subphenotype), (2) "resulting" (caused by ASD related disparity or the health effect of behaviors developed to cope with ASD symptoms), or (3) "associated" (conditions more common in individuals with ASD with etiology not yet known or hypothesized, or an artifact of diagnostic process or trends). Whether a health condition is "truly co-occurring", "resulting", or "associated" has implications for how we design interventions to prevent and treat health conditions in people on the autism spectrum. Ultimately, we think that using clear and temporally focused language can set us on a path to better deduce etiology and develop effective prevention and intervention efforts for health conditions that impact the lives of autistic individuals. We hope that this approach to temporal language to describe health conditions that present with ASD promotes thought and discussion in research, advocate, and autistic communities. Autism Research 2019, 12: 20-25. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Research finds autistic people have more health problems than the general population but we do not understand why. In this commentary, we argue researchers need to use language describing the timing of health problems in autistic people, specifying whether problems truly co-occur (share a cause), result from autism-related disparities, or are more common in autistic people for an unknown reason. Clarifying language can provide more specificity in research and improve efforts to prevent and treat health problems in autistic people.

Using machine learning to identify patterns of lifetime health problems in decedents with autism spectrum disorder.

Very little is known about the health problems experienced by individuals with autism spectrum disorder (ASD) throughout their life course. We retrospectively analyzed diagnostic codes associated with de-identified electronic health records using a machine learning algorithm to characterize diagnostic patterns in decedents with ASD and matched decedent community controls. Participants were 91 decedents with ASD and 6,186 sex and birth year matched decedent community controls who had died since 1979, the majority of whom were middle aged or older adults at the time of their death. We analyzed all ICD-9 codes, V-codes, and E-codes available in the electronic health record and Elixhauser comorbidity categories associated with those codes. Diagnostic patterns distinguished decedents with ASD from decedent community controls with 75% sensitivity and 94% specificity solely based on their lifetime ICD-9 codes, V-codes, and E-codes. Decedents with ASD had higher rates of most conditions, including cardiovascular disease, motor problems, ear problems, urinary problems, digestive problems, side effects from long-term medication use, and nonspecific lab tests and encounters. In contrast, decedents with ASD had lower rates of cancer. Findings suggest distinctive lifetime diagnostic patterns among decedents with ASD and highlight the need for more research on health outcomes across the lifespan as the population of individuals with ASD ages. As a large wave of individuals with ASD diagnosed in the 1990s enters adulthood and middle age, knowledge about lifetime health problems will become increasingly important for care and prevention efforts. Autism Res 2018, 11: 1120-1128. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study looked at patterns of lifetime health problems to find differences between people with autism who had died and community controls who had died. People with autism had higher rates of most health problems, including cardiovascular, urinary, respiratory, digestive, and motor problems, in their electronic health records. They also had lower rates of cancer. More research is needed to understand these potential health risks as a large number of individuals with autism enter adulthood and middle age.

Gender differences in tobacco use among U.S. Special Olympics athletes.

BACKGROUND: The rise in women's tobacco use and subsequent health complications has generated an increase in gender-related tobacco use research. However, no research has examined gender's influence on tobacco use among people with intellectual and developmental disabilities (IDD). OBJECTIVE: To examine 1) tobacco use prevalence rates among men and women with IDD, and 2) correlates of tobacco use among men and women with IDD. METHODS: This study examined gender differences in tobacco use among a sample of 3587 adult U.S. Special Olympics athletes who participated in health screenings from 2007 to 2014. The athletes were aged 18-89 (M = 32.86); 55.8% were male. Prevalence rates were calculated for men and women, and logistic regression analyses were conducted to examine tobacco use's association with age, blood pressure, body mass index, family member tobacco use, and daily fruit and vegetable consumption for each gender. RESULTS: Women's tobacco use prevalence was 4.1%, and men's was 9.4%. The only variable significantly associated with women's tobacco use was family member use, while men's tobacco use was associated with age, systolic blood pressure, family member tobacco use, and fruit and vegetable consumption. CONCLUSION: Results shed light on possible courses of action for reducing tobacco use among women and men with IDD. Further research is needed to develop effective prevention and intervention approaches appropriate for people with IDD.

The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability.

Identifying modifiable correlates of good quality of life in adults with autism spectrum disorder is of paramount importance for intervention development as the population of adults with autism spectrum disorder increases. This study sought to examine social support and perceived stress as potential modifiable correlates of quality of life in adults with autism spectrum disorder. We hypothesized that adults with autism spectrum disorder without co-occurring intellectual disabilities ( N = 40; aged 18-44 years) would report lower levels of social support and quality of life than typical community volunteers who were matched for age, sex, and race ( N = 25). We additionally hypothesized that social support would buffer the effect of perceived stress on quality of life in adults with autism spectrum disorder. Results indicated that adults with autism spectrum disorder reported significantly lower levels of social support and quality of life than matched typical community volunteers. In addition, findings showed significant direct effects of social support and perceived stress on quality of life in adults with autism spectrum disorder. Social support did not buffer the effect of perceived stress on quality of life. Interventions that teach adults with autism spectrum disorder skills to help them better manage stress and cultivate supportive social relationships have the potential to improve quality of life.

Correlates of Social Functioning in Autism Spectrum Disorder: The Role of Social Cognition.

BACKGROUND: Individuals with autism spectrum disorder (ASD) experience marked challenges with social function by definition, but few modifiable predictors of social functioning in ASD have been identified in extant research. This study hypothesized that deficits in social cognition and motor function may help to explain poor social functioning in individuals with ASD. METHOD: Cross-sectional data from 108 individuals with ASD and without intellectual disability ages 9 through 27.5 were used to assess the relationship between social cognition and motor function, and social functioning. RESULTS: Results of hierarchical multiple regression analyses revealed that greater social cognition, but not motor function, was significantly associated with better social functioning when controlling for sex, age, and intelligence quotient. Post-hoc analyses revealed that, better performance on second-order false belief tasks was associated with higher levels of socially adaptive behavior and lower levels of social problems. CONCLUSIONS: Our findings support the development and testing of interventions that target social cognition in order to improve social functioning in individuals with ASD. Interventions that teach generalizable skills to help people with ASD better understand social situations and develop competency in advanced perspective taking have the potential to create more durable change because their effects can be applied to a wide and varied set of situations and not simply a prescribed set of rehearsed situations.

A Scoping Review of Health Disparities in Autism Spectrum Disorder.

Individuals with autism spectrum disorder (ASD) experience increased morbidity and decreased life expectancy compared to the general population, and these disparities are likely exacerbated for those individuals who are otherwise disadvantaged. We conducted a review to ascertain what is known about health and health system quality (e.g., high quality care delivery, adequate care access) disparities in ASD. Nine studies met final inclusion criteria. Seven studies identified racial disparities in access to general medical services for children with ASD. No studies examined disparities in health outcomes or included older adults. We present a model of health disparities (Fundamental Causes Model) that guides future research. Additional work should examine health disparities, and their causal pathways, in ASD, particularly for older adults.

Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder.

As the number of adults with autism spectrum disorder (ASD) grows, the need to identify modifiable correlates of positive outcomes and quality of life (QoL) gains in importance. Research indicates that perceived stress is significantly correlated with QoL in adults with ASD. Studies in the general population of individuals without disabilities indicate that greater participation in social and recreational activities may lessen the negative impact of perceived stress on well-being, and this association may also hold among adults with ASD. We hypothesized that: (1) perceived stress would be negatively associated with QoL; and (2) higher frequency of participation in social activities and recreational activities would moderate the relationship between perceived stress and QoL. We used data collected from 60 adults with ASD aged 24-55 and their mothers to address our hypotheses. Findings indicate that adults with ASD with higher perceived stress are likely to have poorer QoL. Furthermore, greater participation in recreational activities buffers the impact of perceived stress on QoL, but no buffering effect was observed for participation in social activities. These findings suggest that interventions and services that provide supports and opportunities for participation in recreational activities may help adults with ASD manage their stress and lead to better QoL. Autism Res 2017, 10: 973-982. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Perception of Life as Stressful, Not Biological Response to Stress, is Associated with Greater Social Disability in Adults with Autism Spectrum Disorder.

This study examined differences between adults with autism spectrum disorder (ASD; N = 40) and typical community volunteers (N = 25) on measures of stressful life events, perceived stress, and biological stress response (cardiovascular and cortisol reactivity) during a novel social stress task. Additional analyses examined the relationship between stress and social functioning as measured by the Social Adjustment Scale-II and the Waisman Activities of Daily Living scale. Results indicated that adults with ASD experienced significantly more stressful life events and perceived stress, and greater systolic blood pressure reactivity than typical community volunteers. Results also indicated that perceived stress and stressful life events were significantly associated with social disability. Interventions targeting stress management might improve social function in adults with ASD.

Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis.

This study aims to extend the definition of quality of life (QoL) for adults with autism spectrum disorder (ASD, n = 180, ages 23-60) by: (1) characterizing the heterogeneity of normative outcomes (employment, independent living, social engagement) and objective QoL (physical health, neighborhood quality, family contact, mental health issues); and (2) identifying predictors of positive normative outcomes and good objective QoL. Findings of an exploratory latent class analysis identified three groups of adults with ASD-Greater Dependence, Good Physical and Mental Health, and Greater Independence. Findings indicate that better daily living skills, better executive function, and more maternal warmth are associated with assignment to better outcome groups. Findings have implications for interventions designed to enhance achievement of normative outcomes and objective QoL.

Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports.

We examined factors related to subjective quality of life (QoL) of adults with autism spectrum disorder (ASD) aged 25-55 (n = 60), using the World Health Organization Quality of Life measure (WHOQOL-BREF). We used three different assessment methods: adult self-report, maternal proxy-report, and maternal report. Reliability analysis showed that adults with ASD rated their own QoL reliably. QoL scores derived from adult self-reports were more closely related to those from maternal proxy-report than from maternal report. Subjective factors such as perceived stress and having been bullied frequently were associated with QoL based on adult self-reports. In contrast, level of independence in daily activities and physical health were significant predictors of maternal reports of their son or daughter's QoL.

The relationship between stress and social functioning in adults with autism spectrum disorder and without intellectual disability.

Adults with autism spectrum disorder (ASD) face substantial challenges accomplishing basic tasks associated with daily living, which are exacerbated by their broad and pervasive difficulties with social interactions. These challenges put people with ASD at increased risk for psychophysiological distress, which likely factors heavily into social functioning for adults with ASD, as suggested by a growing literature on stress in children that indicates that children with ASD have differential responses to stress than healthy children. We hypothesized that adults with ASD and without intellectual disability (n = 38) would experience more stress than healthy volunteers (n = 37) and that there would be an inverse relationship between stress and social functioning in individuals with ASD. Baseline, semi-structured interview data from a randomized controlled trial of two treatments for adults with ASD were used to assess differences in stress between adults with ASD and healthy volunteers and to assess the relationship between stress response and social functioning in adults with ASD. Findings indicate that adults with ASD experience greater perceived and interviewer-observed stress than healthy volunteers and that stress is significantly related to social functioning in adults with ASD. These findings highlight the role of stress in adult functioning and outcomes and suggest the need to develop and assess treatments designed to target stress and coping in adults with ASD.

A systematic review of psychosocial interventions for adults with autism spectrum disorders.

Individuals with autism spectrum disorders (ASD) spend the majority of their lives as adults, and psychosocial interventions show promise for improving outcomes in this population. This research conducted a systematic review of all peer-review studies evaluating psychosocial interventions for adults with ASD. A total of 1,217 studies were reviewed, only 13 met inclusion criteria. The majority of studies were single case studies or non-randomized controlled trials, and most focused on applied behavior analysis or social cognition training. Effects of psychosocial treatment in adults with ASD were largely positive ranging from d = 0.14-3.59, although the quantity and quality of studies is limited. There is substantial need for the rigorous development and evaluation of psychosocial treatments for adults with ASD.

Video-based coping skills to reduce health risk and improve psychological and physical well-being in Alzheimer's disease family caregivers.

OBJECTIVE: To determine whether video-based coping skills (VCS) training with telephone coaching reduces psychosocial and biological markers of distress in primary caregivers of a relative with Alzheimer's disease or related dementia (ADRD). METHODS: A controlled clinical trial was conducted with 116 ADRD caregivers who were assigned, alternately as they qualified for the study, to a Wait List control condition or the VCS training arm in which they viewed two modules/week of a version of the Williams LifeSkills Video adapted for ADRD family care contexts, did the exercises and homework for each module presented in an accompanying Workbook, and received one telephone coaching call per week for 5 weeks on each week's two modules. Questionnaire-assessed depressive symptoms, state and trait anger and anxiety, perceived stress, hostility, caregiver self-efficacy, salivary cortisol across the day and before and after a stress protocol, and blood pressure and heart rate during a stress protocol were assessed before VCS training, 7 weeks after training was completed, and at 3 months' and 6 months' follow-up. RESULTS: Compared with controls, participants who received VCS training plus telephone coaching showed significantly greater improvements in depressive symptoms, trait anxiety, perceived stress, and average systolic and diastolic blood pressures that were maintained over the 6-month follow-up period. CONCLUSIONS: VCS training augmented by telephone coaching reduced psychosocial and biological indicators of distress in ADRD caregivers. Future studies should determine the long-term benefits to mental and physical health from this intervention. TRIAL REGISTRATION: http://www.clinicaltrials.gov; #NCT00396825.