Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults.

BACKGROUND: The poorer physical health of autistic adults compared to non-autistic adults has been highlighted by several epidemiological studies. However, research has so far been limited to specific geographical areas and has primarily focused on young autistic individuals (aged 35 years and younger). Recent studies indicate a higher rate of mortality in autistic people, as well as poorer quality of self-reported healthcare interactions. This study aims to determine, first, whether autistic people experience greater levels of non-communicable health conditions and second, whether these are explained by differences in demographics (i.e. sex, country of residence, ethnicity, education level), alcohol use, smoking, body mass index (BMI), or family history of medical conditions. METHOD: We employed a cross-sectional, convenience-sampling study via an anonymous, online survey of autistic and non-autistic adults (n = 2305, mean age = 41.6, 65.9% female, 49% autistic). The survey asked participants to self-report information about their demographics, autism diagnosis, diet, exercise, sleep, sexual health, substance use, personal medical history, and family medical history (for all first-degree, biological relatives). Binomial logistic regression across four iterative models of increasing complexity was applied to assess rates of physical health conditions. The Benjamini-Hochberg correction was used to account for multiple testing, and only physical health conditions that achieved at least 1% endorsement within the overall sample (n > 22) were included in the analysis to reduce risk of Type I errors. We also used novel network analysis methods to test whether there are increased levels of multimorbidity between autistic and non-autistic people. RESULTS: There were significantly elevated rates of non-communicable conditions across all organ systems in autistic people, including gastrointestinal, neurological, endocrine, visual, ear/nose/throat, skin, liver and kidney, and haematological conditions. We confirmed previous findings by showing highly significant differences in rates of neurological and gastrointestinal symptoms (p < 0.0001). In addition, we established in the largest sample to date that Ehler-Danlos Syndrome (EDS) was more likely to occur among autistic females compared to non-autistic females. Finally, we found a higher prevalence of Coeliac's disease among autistic individuals compared to non-autistic individuals after controlling for sex, ethnicity, country of residence, alcohol use, smoking, and BMI, but these results became non-significant after accounting for family history. LIMITATIONS: Our study is biased towards females, white individuals, highly educated people, and UK residents, likely due to sampling biases. Our self-report study design may also exclude those who lack access to computers, or those with intellectual disability. Our network analysis is also limited in size. CONCLUSIONS: This study provides evidence of widespread, physical health comorbidity that spans nearly all major organ systems in autistic adults compared to non-autistic adults, using both binary logistic regression and network models. Healthcare professionals must be made aware of the range of co-occurring physical health conditions that may be more common among autistic people. However, our findings also point towards potential avenues requiring further exploration, such as the association of autism with both Coeliac's disease and EDS.

Autistic adults have poorer quality healthcare and worse health based on self-report data.

BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.

Digital Health Paradox: International Policy Perspectives to Address Increased Health Inequalities for People Living With Disabilities.

The COVID-19 pandemic accelerated the uptake of digital health worldwide and highlighted many benefits of these innovations. However, it also stressed the magnitude of inequalities regarding accessing digital health. Using a scoping review, this article explores the potential benefits of digital technologies for the global population, with particular reference to people living with disabilities, using the autism community as a case study. We ultimately explore policies in Sweden, Australia, Canada, Estonia, the United Kingdom, and the United States to learn how policies can lay an inclusive foundation for digital health systems. We conclude that digital health ecosystems should be designed with health equity at the forefront to avoid deepening existing health inequalities. We call for a more sophisticated understanding of digital health literacy to better assess the readiness to adopt digital health innovations. Finally, people living with disabilities should be positioned at the center of digital health policy and innovations to ensure they are not left behind.

Medical symptoms and conditions in autistic women.

LAY ABSTRACT: Sex-steroids, such as testosterone, are thought to be one of the biological factors implicated in autism. This relies on the sex bias in the diagnosis of autism (boys are approximately four times more likely to be diagnosed than girls) and findings of associations with fetal testosterone levels in traits and abilities related to autism. The current study aimed to examine the association between medical conditions and physical symptoms, which tend to manifest in adulthood, and autism in females. Moreover, we examined their association with autistic traits throughout the spectrum. We focused on autistic women because there is little research focusing on the healthcare needs of autistic women, but those that exist suggest heightened vulnerability, and lower access to medical care. We find that conditions related to steroid hormones function are more frequent in autistic women and that they correlate with autistic traits. Specifically, we found that body mass index, reproductive system diagnoses, prediabetes symptoms, irregular puberty onset, and menstrual irregularities were significantly more frequent in autistic women and were significantly correlated with autistic traits in neurotypical women. The findings have important implications for raising awareness in autistic women of the possibility of medical conditions which might need medical attention. In addition, healthcare providers should consider these associations when performing healthcare maintenance checks and/or screening for autism.

The sexual health, orientation, and activity of autistic adolescents and adults.

Small studies suggest significant differences between autistic and nonautistic individuals regarding sexual orientation and behavior. We administered an anonymized, online survey to n = 2386 adults (n = 1183 autistic) aged 16-90 years to describe sexual activity, risk of sexually transmitted infections (STIs), and sexual orientation. Autistic individuals are less likely to report sexually activity or heterosexuality compared to nonautistic individuals, but more likely to self-report asexuality or an 'other' sexuality. Overall, autistic, and nonautistic groups did not differ in age of sexual activity onset or contraction of STIs. When evaluating sex differences, autistic males are uniquely more likely to be bisexual (compared to nonautistic males); conversely, autistic females are uniquely more likely to be homosexual (compared to nonautistic females). Thus, both autistic males and females may express a wider range of sexual orientations in different sex-specific patterns than general population peers. When comparing autistic males and females directly, females are more likely to have diverse sexual orientations (except for homosexuality) and engage in sexual activity, are less likely to identify as heterosexual, and have a lower mean age at which they first begin engaging in sexual activity. This is the largest study of sexual orientation of autistic adults. Sexual education and sexual health screenings of all children, adolescents, and adults (including autistic individuals) must remain priorities; healthcare professionals should use language that affirms a diversity of sexual orientations and supports autistic individuals who may have increased risks (affecting mental health, physical health, and healthcare quality) due to stress and discrimination from this intersectionality. LAY SUMMARY: This is the largest study on the sexual activity, orientation, and health of autistic adults. This study reaffirms that the majority of autistic adults are interested in sexual relationships and engage in sexual activity. Sexual education and sexual health screenings must remain a priority for all individuals, including those with autism; healthcare professionals should be aware that autistic patients may be more likely to identify as Lesbian, Gay, Bisexual, Trans, Queer, Asexual, and other identities not listed here (LGBTQA+) which may put them at greater risk of mental and physical health difficulties due to discrimination.

Understanding the substance use of autistic adolescents and adults: a mixed-methods approach.

BACKGROUND: Autistic individuals might be more likely to misuse substances than non-autistic individuals. Better understanding of these patterns can help clinicians identify strategies to reduce substance use, protecting physical and mental health. The aim of this study was to compare the experiences of substance use between autistic and non-autistic adolescents and adults. METHODS: This study is a mixed-methods study, including both quantitative (closed-ended questions) and qualitative (one open-ended question) online assessments. Data were collected as part of a larger study, the Autism and Physical Health Survey, in which we administered an anonymised, online questionnaire to autistic and non-autistic individuals aged 16-90 years. In the present study, we investigated data on substance use or misuse, using two overlapping but separate samples from the survey (one sample with complete quantitative responses and one sample with complete qualitative responses). Binary measures of substance use were investigated using unadjusted and adjusted binomial logistic regression models. Content analysis was used to compare experiences of autistic and non-autistic adolescents and adults. We used Fisher's exact tests to assess differences in frequency of reporting particular qualitative themes and subthemes. FINDINGS: Survey recruitment was done between Feb 7, 2018, and Aug 26, 2019. At the end of the recruitment, 3657 individuals had accessed the survey. After excluding duplicates as well as participants with missing or incomplete responses, we had data from 2386 participants (1183 autistic and 1203 non-autistic participants; 1571 female and 815 male participants) for the quantitative analyses and data from 919 participants (429 autistic and 490 non-autistic participants; 569 female and 350 male participants) in the qualitative analyses. The samples for the quantitative and qualitative analyses were predominantly composed of female individuals, White individuals, UK residents, and those without intellectual disability. Autistic individuals were less likely than non-autistic individuals to report consuming alcohol regularly (16·0% of autistic individuals vs 22·2% of non-autistic individuals; adjusted model: odds ratio [OR] 0·69, 95% CI 0·55-0·86; p=0·0022) or binge-drinking (3·8% vs 8·2%; adjusted model: OR 0·38, 0·26-0·56; p<0·0001). Autistic male participants were less likely than non-autistic male participants to report ever having smoked (50·8% of autistic male participants vs 64·6% of non-autistic male participants; adjusted OR 0·50; 0·32-0·76; p=0·0022) or ever using drugs (35·4% vs 52·7%; adjusted OR 0·53; 0·35-0·80; p=0·0022). Regarding our qualitative analyses, among participants who reported a specific motivation for drug use, compared with non-autistic individuals, autistic individuals were nearly nine times more likely to report using recreational substances to manage behaviour (OR 8·89, 2·05-81·12; p=0·0017) and more likely to report using recreational substances to manage mental health symptoms (OR 3·08, 1·18-9·08; p=0·032). Autistic individuals were also more likely to report vulnerability associated with substance use (OR 4·16, 1·90-10·05; p=0·00027), including childhood use of drugs and being forced or tricked into using drugs. INTERPRETATION: Autistic individuals might be less likely than non-autistic individuals to report engaging in substance misuse. They also report using drugs to self-medicate. Clinicians should be aware of vulnerability linked to substance use among autistic patients and should work cooperatively with patients to effectively manage autistic and comorbid symptoms. FUNDING: Autism Research Trust, Rosetrees Trust, Cambridge and Peterborough NHS Foundation Trust.

An investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults.

BACKGROUND: Studies of autistic children suggest that restricted eating, reduced physical activity, and sleep disorders are common; however, no studies attempt to broadly describe the diet, exercise, and sleep patterns of autistic adults or consider relationships between lifestyle behaviors and the widely reported increased risks of obesity and chronic conditions. To address this, the authors developed the largest study of lifestyle patterns of autistic adults and assessed their relationships to body mass index, health outcomes, and family history. METHODS: We administered an anonymized, online survey to n = 2386 adults (n = 1183 autistic) aged 16-90 years of age. We employed Fisher's exact tests and binomial logistic regression to describe diet, exercise, and sleep patterns; mediation of seizure disorders on sleep; body mass index (BMI); relationships of lifestyle factors to BMI, cardiovascular conditions, and diabetic conditions; and sex differences among autistic adults. RESULTS: Autistic adults, and particularly autistic females, exhibit unhealthy diet, exercise, and sleep patterns; they are also more likely to be underweight or obese. Limited sleep duration and high rates of sleep disturbances cannot be accounted for by epilepsy or seizure disorders. Lifestyle factors are positively related to higher risk of cardiovascular conditions among autistic males, even more than family history. LIMITATIONS: Our sample may not be representative of all autistic and non-autistic people, as it primarily comprised individuals who are white, female, have a high school education or higher, and reside in the UK. Our sampling methods may also exclude some individuals on the autism spectrum, and particularly those with moderate to severe intellectual disability. This is a cross-sectional sample that can test for relationships between factors (e.g., lifestyle factors and health outcomes) but cannot assess the direction of these relationships. CONCLUSIONS: Autistic adults are less likely to meet minimal health recommendations for diet, exercise, and sleep-and these unhealthy behaviors may relate to excess risk of cardiovascular conditions. Although the present study can only provide preliminary, correlational evidence, our findings suggest that diet, exercise, and sleep should be considered and further investigated as key targets for reducing the now widely reported and dramatically increased risks of health comorbidity and premature death among autistic individuals compared to others. Physicians should work cooperatively with patients to provide health education and develop individualized strategies for how to better manage challenges with diet, exercise, and sleep.

Increased prevalence of non-communicable physical health conditions among autistic adults.

LAY ABSTRACT: Previous research indicates autistic individuals die at a younger age than others and that this is possibly due in part to chronic physical health conditions. The present study used an anonymous, online survey to determine how common certain physical health conditions are among autistic adults, compared with non-autistic adults. We found autistic adults are more likely to develop heart conditions, lung conditions, and diabetes than non-autistic adults. Autistic females may be at higher risk of developing certain conditions (including respiratory conditions, asthma, and prediabetes) than autistic males. Finally, autistic individuals have increased health risks even when considering lifestyle factors (such as smoking, alcohol, and body mass index). This is still a relatively small study, and future research needs to confirm these findings and identify why these risks exist.

Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals.

It is unclear whether transgender and gender-diverse individuals have elevated rates of autism diagnosis or traits related to autism compared to cisgender individuals in large non-clinic-based cohorts. To investigate this, we use five independently recruited cross-sectional datasets consisting of 641,860 individuals who completed information on gender, neurodevelopmental and psychiatric diagnoses including autism, and measures of traits related to autism (self-report measures of autistic traits, empathy, systemizing, and sensory sensitivity). Compared to cisgender individuals, transgender and gender-diverse individuals have, on average, higher rates of autism, other neurodevelopmental and psychiatric diagnoses. For both autistic and non-autistic individuals, transgender and gender-diverse individuals score, on average, higher on self-report measures of autistic traits, systemizing, and sensory sensitivity, and, on average, lower on self-report measures of empathy. The results may have clinical implications for improving access to mental health care and tailoring adequate support for transgender and gender-diverse individuals.

Don't go there - It's not a nice place: Older adults' experiences of delirium.

Delirium is a common neuropsychiatric disorder that causes fluctuations in consciousness and attention, impairments in cognitive functioning and information processing, and changes in how individuals perceive what is going on around them. Delirium is associated with increased mortality, ongoing impairment in cognitive functioning, and a high possibility of discharge to residential care. The experience of delirium may be distressing for the patient and their family. Despite the frequency of delirium in hospitalized elderly patients, there is a dearth of literature that examines their experience of this phenomenon, and how it affects individuals as they continue their lives. This study uses descriptive qualitative methodology to explore the question: 'What is the experience of delirium for older adults during hospitalisation?' Data were collected from older adults who had received hospital care in a tertiary general hospital setting. Seven participants were recruited between January and June 2017. Semi-structured individual interviews were used to gather data which was analysed using content analysis. Four themes were identified. These were sense of confusion, disrupted sense of autonomy, perceptual disturbances, and emotional response. Participants exercised agency in the way they responded to these experiences. The study highlighted the need for delirium prevention, and education to improve nurses' recognition, understanding, and management of delirium. In particular, there is a need for nurses to attend to the psychological and emotional experience of delirium.