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Purpose: The study purpose was to examine the effect of emotional support on the overall mental health and stress for caregivers of children with autism spectrum disorder (ASD)., Methods: A cross-sectional retrospective study using secondary data from the 2016-2019 National Survey of Children's Health was conducted using single variable and multivariable linear regression analyses., Results: More informal emotional support sources were associated with better overall mental health (β = 0.124, SE = 0.015, p < .001) and reduced stress (β = -0.261, SE = 0.039, p < .001) for caregivers of children with ASD, controlling for covariates. The number of formal emotional support sources was not significantly associated with caregiver overall mental health or stress when controlling for covariates. Increased amounts of total emotional support sources were significantly associated with increased overall mental health (β = 0.042, SE = 0.010, p < .001) and reduced stress (β = -0.093, SE = 0.024, p < .001) for caregivers. Other factors significantly associated with caregiver outcomes included caregiver sex, caregiver marital status, caregiver education level, economic hardship, child sex, child race/ethnicity, ASD severity, and child receipt of ASD treatment., Conclusion: More emotional support sources, in particular informal support sources, may be a protective factor for well-being for caregivers of children with ASD., Practice Implications: Health care providers should evaluate the impact of their formal support services on caregivers of children with ASD and advocate for increased informal and formal support resources for these caregivers., Competing Interests: Declaration of competing interest We have no known conflict of interest to disclose., (Copyright © 2024. Published by Elsevier Inc.)

Background: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability., Method: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments., Results: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible., Conclusion: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research., (© 2021 John Wiley & Sons Ltd.)

A large, nationally representative sample from a preexisting dataset, the National Core Indicators, was used to examine the impact of stress and social support on the mental health of adults with intellectual disability (ID). Stress was significantly correlated with both mental illness and severity of behavior problems, with each additional stressor increasing the odds of poor mental health by 20%. This relationship held, even after controlling for level of ID, gender, and place of residence. Lack of social support was associated with having a mental illness; individuals who lacked social support were twice as likely to have a mental illness. The importance of considering these factors in the prevention, diagnosis, and treatment of mental health in this population is discussed.

Background: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. Method: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. Results: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. Conclusion: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research. [This article was co-authored by the Nisonger Center RRTC on Health and Function.]

While an increasing number of girls and women are being identified with autism, we know little about the health of reproductive-aged autistic women. Our objectives were to (1) describe health characteristics of reproductive-aged autistic women who could potentially become pregnant and (2) compare these characteristics with those of non-autistic women. We conducted a population-based cross-sectional study using 2017-2018 administrative health data from Ontario, Canada. A total of 6,870 fifteen- to 44-year-old autistic women were identified and compared with 2,686,160 non-autistic women. Variables of interest included social determinants of health (neighborhood income, residential instability, material deprivation, rurality), health (co-occurring medical and psychiatric conditions, use of potentially teratogenic medications, history of assault), and health care factors (continuity of primary care). Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, use of potentially teratogenic medications, and history of assault. These findings highlight the need for health interventions tailored to the needs of reproductive-aged autistic women.

Mental illness, and its assessment and treatment, is a concern for caregivers and professionals working with people with intellectual disability (ID), as well as a cause of distress and disability for people with ID. Research in this area is hindered by difficulties associated with recognizing symptoms of mental illness and tracking their changes. The use of empirically derived and tested tools can improve clinical and research outcomes. This study compares proxy reports of mental health symptoms using the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (PAS-ADD) Checklist to self-reported symptoms using an interview form of the Brief Symptom Inventory (BSI). While the two scales were statistically correlated, clinically they presented very differently. The PAS-ADD identified 23.6% of participants as scoring in the at-risk category of mental health symptoms, while self-rating of symptoms on the BSI resulted in 67.8% of participants scoring above the cutoff. Concerns regarding the use of the BSI for a wide range of people with ID are discussed, as well as the concerns of using proxy report for subjective topics such as mental health symptoms.

People with intellectual disability (ID) were once considered immune to developing psychopathology, including affective disorders such as depression. Now research has shown that people with ID do suffer from depression, and the focus is on understanding how to best diagnose and provide treatment. Research has come a long way in adapting the diagnostic process for people with mild/moderate deficits in intellectual functioning and communication abilities. However, there is a lack of research and clinical understanding regarding how to assess depression in people who lack communication skills and function with severe or profound deficits in intellectual functioning. This paper reviews the available literature on the occurrence of depression in people with ID, specifically those with more significant deficits, and discusses the difficulties that arise in trying to determine a diagnosis of depression for this population.

Aim: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. Design: A qualitative study with semi‐structured interviews. Methods: Between July 2019 and February 2020, in‐person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. Results: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. Conclusion: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. Impact: Birthing people with disabilities need multidisciplinary, proactive, and strengths‐based postpartum care to mitigate risk for health complications. Further, disability‐related training and guidelines for health and social service providers is required. Reporting method: Consolidated criteria for reporting qualitative research (COREQ). Patient or Public contribution: Our research team included two peer researchers with physical disabilities who served as co‐interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives. [ABSTRACT FROM AUTHOR]

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID. [ABSTRACT FROM AUTHOR]

Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD. Articles were limited to those available in the English language and conducted in a high income country. Articles had to include a population of rural caregivers of children with ASD and focus on caregiver mental health and/or the impact of support on caregiver mental health. Searches were conducted with Embase, PubMed, CINAHL, ERIC, and PsycINFO and 22 articles were included. Study findings indicate overall poor mental health for rural caregivers of children with ASD. Formal and informal support appear to be beneficial in decreasing stress for rural caregivers of children with ASD. However, a few studies indicated that formal support may add stress to rural caregivers. There is limited information regarding support needs and the impact of support services on the mental health of rural caregivers of children with ASD. There is a need to increase access to support resources in rural areas for caregivers of children with ASD. Healthcare professionals, including nurses, can play a fundamental role in supporting, educating, and connecting caregivers to other support services. • Urban and rural caregivers of children with ASD have high levels of stress. • Some rural caregivers reported not feeling respected by healthcare professionals. • Navigating ASD resources can be difficult and increase stress for some caregivers. • Rural caregivers felt like they were left to navigate resources on their own. • Parent-intervention programs decrease stress for caregivers. [ABSTRACT FROM AUTHOR]

Mental illness, and its assessment and treatment, is a concern for caregivers and professionals working with people with intellectual disability (ID), as well as a cause of distress and disability for people with ID. Research in this area is hindered by difficulties associated with recognizing symptoms of mental illness and tracking their changes. The use of empirically derived and tested tools can improve clinical and research outcomes. This study compares proxy reports of mental health symptoms using the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (PAS-ADD) Checklist to self-reported symptoms using an interview form of the Brief Symptom Inventory (BSI). While the two scales were statistically correlated, clinically they presented very differently. The PAS-ADD identified 23.6% of participants as scoring in the at-risk category of mental health symptoms, while self-rating of symptoms on the BSI resulted in 67.8% of participants scoring above the cutoff. Concerns regarding the use of the BSI for a wide range of people with ID are discussed, as well as the concerns of using proxy report for subjective topics such as mental health symptoms. [ABSTRACT FROM AUTHOR]

The authors assessed available prevalence information regarding neuropsychiatric conditions among adults with Down syndrome (DS) and compared these findings among adults with other intellectual disability (non-DS). The study entailed a survey of 291 adults with DS living in Ohio (USA). Twenty-three percent of adults with DS reported having a co-occurring psychiatric disorder, a smaller than the reported occurrence of such conditions in the general adult intellectual disability population. Depression, anxiety disorders, and dementia or Alzheimer's disease were the most frequently reported neuropsychiatric disorders by adults with DS. The likelihood of experiencing a psychiatric disorder increased with age but did not vary by sex among adults with DS. Lower rates of problem behavior were reported in adults with DS compared to adults with intellectual disability (non-DS). The authors' findings indicate that adults with DS may present different rates and types of co-occurring psychiatric disorders than the larger population of adults with other intellectual disability. These findings warrant additional research and could provide critical information for planning and intervention. [ABSTRACT FROM AUTHOR]

People with intellectual disability (ID) experience high rates of chronic health problems and poor overall health compared to people without disabilities. Recent attention to health risk behaviors such as poor diet, lack of physical activity, and underuse of health care has led to the development of several programs intended to reduce disparities in this population through health promotion programs. A review of the literature was conducted focusing on programs developed to target behavioral changes in the person with ID. Thirteen studies, evaluating 10 different health promotion programs, were found. Programs varied significantly in design, targeted health change, and demonstrated effectiveness. Components of each program are systematically reviewed and recommendations made for future programs based upon the current evidence. [ABSTRACT FROM AUTHOR]

People with intellectual disability (ID) were once considered immune to developing psychopathology, including affective disorders such as depression. Now research has shown that people with ID do suffer from depression, and the focus is on understanding how to best diagnose and provide treatment. Research has come a long way in adapting the diagnostic process for people with mild/moderate deficits in intellectual functioning and communication abilities. However, there is a lack of research and clinical understanding regarding how to assess depression in people who lack communication skills and function with severe or profound deficits in intellectual functioning. This paper reviews the available literature on the occurrence of depression in people with ID, specifically those with more significant deficits, and discusses the difficulties that arise in trying to determine a diagnosis of depression for this population. [ABSTRACT FROM PUBLISHER]

Maslow's hierarchy implies that human growth is associated with adult maturity, a decrease in the prepotency of "lower" motives and an increase in the prepotency of "higher" motives. These hypotheses were evaluated with data from 1,712 participants who had been tested with the Reiss Profile, which is a standardized assessment of a comprehensive range of enduring (trait) strivings. The results provided some support for Maslow's general idea of human growth: The lower motives (such as eating and exercise) were stronger for younger versus older adults, whereas the higher motives (such as honor and idealism) were stronger for older versus younger adults. The results demonstrated a new method for studying some of the issues raised by Maslow. [ABSTRACT FROM AUTHOR]

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the "hidden majority." Very little is known about the health and well-being of these adults. It remains to be seen if the hidden majority is comparably susceptible to mental health difficulties, given how little is known about this population by DD systems. The purpose of this manuscript is to highlight where one may identify individuals belonging to this hidden population and how researchers might effectively recruit from this group so as to ensure more representative samples of all people with IDD. [ABSTRACT FROM AUTHOR]