From the intensive care unit to a new home: Case report on the complex treatment and reintegration of a patient with intellectual disability and autism spectrum disorder

The COVID-19 pandemic and associated restrictions are expected to affect the mental health of the population, especially people with intellectual disability and/or autism spectrum disorder, because of a variety of biological and psychosocial reasons. This study aimed to estimate if COVID-19 restrictions are associated with a change in number of total consultations carried out by psychiatrists and prescription of psychotropic medication in people with intellectual disability and/or autism spectrum disorder, within a community intellectual disability service. A quantitative observational study was conducted, involving retrospective and prospective data collection before and during lockdown. Data was collected on a spreadsheet and emailed to all psychiatrists working within the Coventry and Warwickshire Partnership NHS Trust-wide community intellectual disability service. Variables included total consultations, medication interventions, types of medications used, multidisciplinary team input and clinical reasons for medication interventions. Data was analysed separately for child and adolescent mental health services (CAMHS) and adult intellectual disability teams, and for the whole service. During the lockdown period, total consultations in the community intellectual disability service increased by 19 per week and medication interventions increased by two per week. Multidisciplinary team input increased in CAMHS from 0.17 to 0.71 per week and in adult intellectual disability from 5.7 to 6.5 per week. Hypnotics and benzodiazepines were the most commonly prescribed psychotropic medications during the lockdown period. COVID-19-related lockdown resulted in an increase in medication interventions, total consultations and involvement of multidisciplinary teams to manage mental health and behavioural issues in people with intellectual disability and/or autism spectrum disorder.

The goal of this communication is to provide clinicians and behavioral scientists with a scoping perspective on the diverse array of impacts of the COVID-19 pandemic on individuals with intellectual and developmental disabilities (IDD) in the U.S. It is our hope that this will stimulate subsequent scientific and advocacy efforts to ameliorate the disproportionate burden of the pandemic on people with IDD.We begin with the assertion that among non-infected persons in the U.S. few are more adversely affected by COVID-19 than individuals with IDD, given that a vast proportion require in-person care or critical therapeutic support within their living environments, with little back-up or systematic coverage for prolonged interruption of services.Many have temporarily lost access to trained caregivers or community service providers, and now face evolving threats to the return of baseline service, given uncertainties in State and agency budgets.Therefore, a first priority relates to restoration of in-person support services or comparable alternatives.There have been emerging guidelines on the safe care and support of individuals with IDD during the COVID pandemic-see Supplementary Table (ST) 1 which lists resources and documentation of early success of such strategies, however guidance is still evolving, has not permeated all reaches of the community where the information is desperately needed, and is not always presented in ways that can be fully comprehended by those with IDD.It must be

Evidence regarding the risk of incident kidney failure based on developmental disabilities remains scarce. Accordingly, we examined the risk of kidney failure in individuals with intellectual disability (ID) and autism spectrum disorder (ASD). This retrospective cohort study used data from the National Disability Registry of Korea and identified all individuals registered with ID/ASD between 2004 and 2020. In total, 155,729 individuals with ID and 22,385 with ASD and their age- and sex-matched controls (n = 467,187, and 67,155, respectively) were included and followed up until December 2023. Cox proportional hazard analyses were performed to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for the risk of kidney failure in individuals with ID/ASD compared with controls. A total of 1,058 kidney failure events were identified in the ID cohort (687 ID and 371 controls) and 20 events in the ASD cohort (16 ASD and 4 controls). Individuals with developmental disabilities had a higher kidney failure risk than controls, with adjusted HRs (95% CIs) of 5.50 (4.75-6.36) for ID and 8.62 (2.68-27.74) for ASD. In subgroup analyses, both ID and ASD were associated with an increased risk of kidney failure in most subgroups. Age, sex, income level, and comorbidities showed a significant interaction with ID in relation to kidney failure risk (all p < 0.01), whereas no significant interaction was observed between baseline characteristics and ASD. Individuals with ID and ASD had an increased risk of incident kidney failure. Tailored preventive strategies against kidney failure are warranted for this population.

Objectives Parents of children with intellectual disability (ID) and autism spectrum disorder (ASD) frequently report high caregiver burden, stress, and a diminished quality of life (QoL), yet comparative data are scarce in low-resource settings. This study evaluated and compared caregiver stress, burden, and QoL among parents of children with ID and ASD. Material and Methods A cross-sectional study was conducted at a tertiary psychiatric center in India. Ninety parents of children aged 5–18 years with DSM-5-diagnosed ID (n = 60) or ASD (n = 30) were recruited from outpatient services through non-probability purposive sampling. Exclusion criteria included parental psychiatric illness, severe medical illness, or unwillingness to participate, and children with significant neurological comorbidities. Sociodemographic and clinical information were obtained using a semi-structured proforma. Parenting stress was measured with the Parenting Stress Scale; caregiver burden was assessed using both the Kingston Caregiver Stress Scale (KCSS) and the Family Burden Interview Schedule (FBIS). Parental quality of life was evaluated using the WHOQoL-BREF (physical, psychological, social, and environmental domains). Statistical analyses were performed using SPSS, with t tests or Mann–Whitney U tests for group comparisons and effect sizes calculated. Results Both groups were comparable in age, marital status, family structure, and parental occupation; however, parents of children with ID were more often from lower socioeconomic strata (p = 0.027). Mean Parenting Stress Scale scores did not differ significantly between ID (52.57 ± 14.65) and ASD (53.13 ± 10.38) groups (p = 0.832), indicating similar perceived parenting stress. Caregiver burden measured by KCSS and FBIS was also comparable between groups (KCSS medians 35 vs 36; FBIS means 35.47 vs 37.27; p &gt; 0.07). In contrast, parental QoL differed markedly. Across all WHOQoL-BREF domains, parents of children with ASD reported significantly lower scores than those of children with ID: physical domain means 19.80 vs 34.60 (p &lt; 0.001); psychological 19.84 vs 33.05 (p &lt; 0.001); social 21.00 vs 31.84 (p &lt; 0.001); and environmental 25.68 vs 32.01 (p &lt; 0.001). Effect sizes ranged from medium to large (0.38–0.63), demonstrating substantial QoL disparities. Conclusion While parenting stress and caregiver burden were similar among parents of children with ID and ASD, quality-of-life deficits were markedly greater in parents of children with ASD. These findings highlight the need for targeted psychosocial interventions to improve the well-being of caregivers, particularly in families of children with ASD. Screening for socioeconomic disadvantage and providing support services may mitigate the adverse impact on caregivers’ physical, psychological, social, and environmental well-being.

Objectives This study investigated the utility of specific predictive and discriminative items within the Social Communication Questionnaire (SCQ) for distinguishing between autism spectrum disorder (ASD), intellectual disability (ID), and co-occurring ASD + ID in children. Methods A total of 137 children aged 4 to 12 years (52 typically developing (TD), 34 ASD, 26 ID, 25 ASD + ID) were included in the study. Cognitive development assessments were conducted for the ASD, ID, and ASD + ID groups in suitable cases. SCQ items were evaluated both in terms of total and subscale scores and individual items across groups. Results The TD group had the lowest scores on the SCQ, while the ID group had significantly lower total and communication subscale scores on the SCQ compared to the ASD group. Additionally, there were no significant differences in SCQ scores between the ASD group and the co-occurring ASD + ID group. The ID group had lower scores on both the communication subscale and the total SCQ compared to the co-occurring ASD + ID group. The Receiver Operating Characteristic (ROC) analysis of SCQ total scores for differentiating the ASD + ID group from the ID group revealed an AUC of 0.834 for the total score, with a cutoff of 16.50 (sensitivity: 76%, specificity: 80.8%). Logistic regression identified 29 significant predictors distinguishing ASD + ID from ID, with absence of ‘Group play’ (p = 0.003, OR = 4.010) being the most predictive being in the ASD + ID group. Among the top items in the ROC analysis for the ID and ASD + ID groups, ‘Friends (absence of close or best friends)’, ‘Range of facial expression (absence of normal facial expressions)’, and absence of ‘Head shaking to mean no’ were identified as the highest discriminative factors. Conclusions This study highlights the potential of using the SCQ alongside clinical assessments to diagnose ASD in individuals with ID, emphasizing non-verbal communication, participation in group play, presence of close or best friends, and range of facial expression as key distinguishing factors. Further research with larger samples and comparisons of educational interventions based on these indicators is essential for developing tailored educational programs for the ASD + ID group.

Aims and Objectives To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels. Background It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time. Methods A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool. Results The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder. Conclusion Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated.

Very little is known about how people with intellectual disability (ID) or autism spectrum disorder (ASD) use the Internet. However, we do know that many of them have limited social circles. Electronic social media could facilitate the development of relationships, increase social participation and reduce social isolation for these people. However it may also expose users to unwanted encounters. Our exploratory study attempts to get a glimpse of Internet experiences of young adults with ID or ASD. Eight participants (five with ID and three with ASD) whose mean age was 25 years participated in this preliminary study. A sociodemographic and Internet use questionnaire was administered with the help of the participants’ support worker. Seven participants agreed to be interviewed by one of the researchers in a separate meeting, in the presence of their support worker. Results show that all participants enjoyed using the Internet for communicating (e.g. Facebook, e‑mail, chatrooms, dating sites) or entertainment (e.g. watching videos, listening to music). Three male subjects played games online, and only participants with ASD (without ID) created content (e.g. website or blog). All interviewees with ID and two of the three with ASD had distressing experiences including: being insulted online, having false rumors spread, receiving threats or being targets of sexual cyber-solicitation. Users with ID have had to rely on friends, parents or social workers to avoid or rectify cyber-victimization episodes. Internet access has opened a wide window of opportunity for people with ID and ASD, but more education and support is needed to ensure safe and positive Internet use by this population.

Effectively serving students with autism spectrum disorders (ASDs) requires professionals to possess specialized knowledge, skills, and understanding. When students with ASDs are from culturally or linguistically diverse (CLD) families, the professionals assessing and providing services to the students need the additional dimension of how cultural and linguistic differences may affect identification, assessment, and treatment strategies.

IntroductionMothers of children with intellectual disability or autism spectrum disorder (ASD) have poorer health than other mothers. Yet no research has explored whether this poorer health is reflected in mortality rates or whether certain causes of death are more likely. We aimed to calculate the hazard ratios for death and for the primary causes of death in mothers of children with intellectual disability or ASD compared to other mothers.MethodsThe study population comprised all mothers of live-born children in Western Australia from 1983–2005. We accessed state-wide databases which enabled us to link socio-demographic details, birth dates, diagnoses of intellectual disability or ASD in the children and dates and causes of death for all mothers who had died prior to 2011. Using Cox Regression with death by any cause and death by each of the three primary causes as the event of interest, we calculated hazard ratios for death for mothers of children intellectual disability or ASD compared to other mothers.Results and DiscussionDuring the study period, mothers of children with intellectual disability or ASD had more than twice the risk of death. Mothers of children with intellectual disability were 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure than other mothers. Due to small numbers, only hazard ratios for cancer were calculated for mothers of children with ASD. These mothers were about 50% more likely to die from cancer than other mothers. Possible causes and implications of our results are discussed.ConclusionSimilar studies, pooling data from registries elsewhere, would improve our understanding of factors increasing the mortality of mothers of children with intellectual disability or ASD. This would allow the implementation of informed services and interventions to improve these mothers' longevity.

Sensory processing disorders have been linked to stereotypical behaviours in children with intellectual disability (ID) and autism spectrum disorders (ASD) and to anxiety in children with ASD. In earlier phases of this study with the same participants, we found that those with both ASD and ID were more motivated than those with ID alone to engage in stereotypical behaviour to alleviate anxiety. In this phase, we confirmed that children with both ASD and ID and those with ID alone process sensation differently than typically developing children. We asked: Do the sensory processing difficulties of children with ASD and ID differ significantly from those of children with ID alone in a way that would help explain the increased anxiety of the former group? Parents of children with ASD and ID (n = 29; mean age 9.7 years) and with ID alone (n = 23; mean age 9.5 years) completed a Sensory Profile (SP) to provide information about their children's sensory processing abilities. SP quadrant scores for each group were compared with each other and with the published norms of typically developing children. Children with ASD and ID and with ID alone processed sensory information differently than typically developing children (P=0.0001;d= >2.00). Children with both ASD and ID were significantly more sensitive (P=0.007;d=0.70) and avoidant (P < 0.05;d=0.47) than the children with ID alone. We conclude that increased sensitivity and the tendency to avoid sensation may help explain anxiety in children with autism.

WPA Working Group on Defining and Managing Autism Spectrum Disorder: spreading knowledge for the next generations of psychiatrists.

BackgroundAccurate knowledge of the relationship between craniofacial anomalies (CFA), intellectual disability (ID) and autism spectrum disorder (ASD) is essential to improve services and outcomes. The aim is to describe the association between CFA, ID and ASD using linked population data.MethodsAll births (1983–2005; n = 566,225) including CFA births (comprising orofacial clefts, craniosynostosis, craniofacial microsomia and mandibulofacial dysostosis) surviving to 5 years were identified from the birth, death, birth defects and midwives population data sets. Linked data from these data sets were followed for a minimum of 5 years from birth until 2010 in the intellectual disability database to identify ID and ASD. These associations were examined using a modified Poisson regression.ResultsPrevalence of ID and ASD was higher among CFA (especially with additional anomalies) than those without [prevalence ratio 5.27, 95% CI 4.44, 6.25]. It was higher among CFA than those with other gastrointestinal and urogenital anomalies but lower than nervous system and chromosomal anomalies. Children with CFA and severe ID had a higher proportion of nervous system anomalies.ConclusionsFindings indicate increased ID and ASD among CFA but lower than nervous system and chromosomal anomalies. This population evidence can improve early identification of ID/ASD among CFA and support service planning.ImpactOur study found about one in ten children born with craniofacial anomalies (CFA) are later identified with intellectual disability (ID).Prevalence of ID among CFA was higher than those with other gastrointestinal, urogenital, and musculoskeletal birth defects but lower than those with the nervous system and chromosomal abnormalities.Most children with craniofacial anomalies have a mild-to-moderate intellectual disability with an unknown aetiology.On average, intellectual disability is identified 2 years later for children born with non-syndromic craniofacial anomalies than those with syndromic conditions.Our findings can improve the early identification of ID/ASD among CFA and support service planning.

Community participation is associated with a range of positive developmental outcomes; however, the frequency, depth and resources associated with participation for youth with intellectual disability (ID) and autism spectrum disorder (ASD) are not well understood. Caregivers of 212 youth with ASD and ID and only ID, aged 11-22 years, completed an online survey. Comparisons were made of caregiver reports of diversity and frequency of participation, levels of participation involvement and related environmental barriers and supports. The diversity and frequency of community participation of youth with ASD and ID approximated that of youth with ID only. Youth with ASD and ID were reported to be significantly less involved in the community activities in which they participated. Environmental features, and in particular, the social demands of community-based activities, were significant barriers to youths' participation. The current study highlights individual and environmental factors amenable to intervention that may foster successful community participation among youth with ASD and ID.

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities

The ComFor study has indicated that individuals with intellectual disability (ID) and autism spectrum disorder (ASD) show enhanced visual local processing compared with individuals with ID only. Items of the ComFor with meaningless materials provided the best discrimination between the two samples. These results can be explained by the weak central coherence account. The main focus of the present study is to examine whether enhanced visual perception is also present in low-functioning deaf individuals with and without ASD compared with individuals with ID, and to evaluate the underlying cognitive style in deaf and hearing individuals with ASD. Different sorting tasks (selected from the ComFor) were administered from four subsamples: (1) individuals with ID (n = 68); (2) individuals with ID and ASD (n = 72); (3) individuals with ID and deafness (n = 22); and (4) individuals with ID, ASD and deafness (n = 15). Differences in performance on sorting tasks with meaningful and meaningless materials between the four subgroups were analysed. Age and level of functioning were taken into account. Analyses of covariance revealed that results of deaf individuals with ID and ASD are in line with the results of hearing individuals with ID and ASD. Both groups showed enhanced visual perception, especially on meaningless sorting tasks, when compared with hearing individuals with ID, but not compared with deaf individuals with ID. In ASD either with or without deafness, enhanced visual perception for meaningless information can be understood within the framework of the central coherence theory, whereas in deafness, enhancement in visual perception might be due to a more generally enhanced visual perception as a result of auditory deprivation.