Enrolment, attendance, and education resourcing and support among 5-12 year old autistic students in Aotearoa New Zealand: a nationwide cross-sectional study

Many autistic youth have complex healthcare needs, resulting in high rates of health service utilization. However, many characteristics of this health service utilization remain unknown. Using whole-of-population data, this study aimed to quantify and compare rates of psychiatric and non-psychiatric health service utilization among autistic and non-autistic youth, with and without co-occurring intellectual disability. A national retrospective cohort study was employed using linked individual-level administrative data for Aotearoa New Zealand youth (aged 0–24 years). Health service utilization outcomes included 11 psychiatric and non-psychiatric domains. Propensity score matching on a range of sociodemographic measures compared groups across health service utilization outcomes. Data were obtained for 19,479 autistic youth, 29% of whom had a co-occurring intellectual disability and 1,561,278 non-autistic youth. Results demonstrated higher rates of mental health service utilization among autistic compared with non-autistic youth, including inpatient (prevalence ratio 5.85; 95% confidence interval 4.93–6.94) and outpatient (prevalence ratio 4.96; 95% confidence interval 4.75–5.18) service use and psychotropic medication dispensing (prevalence ratio 6.83; 95% confidence interval 6.65–7.02), particularly among autistic youth without intellectual disability. Rates of non-psychiatric hospital admissions (prevalence ratio 1.93; 95% confidence interval 1.85–2.01), potentially avoidable hospitalizations (prevalence ratio 1.91; 95% confidence interval 1.82–2.00) and outpatient visits (prevalence ratio 1.99; 95% confidence interval 1.95–2.01) were also higher among autistic youth. Research implications for delivery of healthcare services are discussed.Lay abstractAutistic youth generally use healthcare services more often than non-autistic youth. However, we know very little about the factors that can affect health service use and the types of services that are used, and this has not been explored in Aotearoa New Zealand. We analysed data from New Zealand to compare health service use among autistic and non-autistic youth (0 to 24-year-olds). Data were available for 19,479 autistic youth and 1,561,278 non-autistic youth. We compared hospitalizations, specialist visits, emergency department visits and use of different types of medications. In this study, autistic youth were found to have been hospitalized for medical and mental health reasons, more often than non-autistic youth. Autistic youth were also more likely to have attended specialist appointments and to have been given medication. These differences were particularly large for medications commonly used for mental health conditions (e.g. anxiety, depression, attention deficit hyperactivity disorder) or associated symptoms. Autistic youth who also had an intellectual disability were more likely to use healthcare services for physical health conditions, but were less likely to use mental health services, when compared with autistic youth who did not have an intellectual disability. These findings, along with other research, suggest that the healthcare needs of autistic youth are not always being met. Further work is needed to enhance our understanding of co-occurring conditions among autistic youth, including those that result in high rates of health service use, in order to inform the development of healthcare services and training for healthcare professionals to better cater to the needs of autistic youth.

Autistic children experience higher levels of anxiety than their peers. Making appropriate diagnoses of anxiety disorders and providing effective treatment for these children is particularly difficult. Inconsistent evidence suggests that levels of anxiety in autistic children are related to intellectual functioning. We provide the first meta-analysis of this evidence. A systematic search identified 49 papers for review. These papers included measures of anxiety and intelligence quotient in 18,430 autistic children. Studies employing correlations showed evidence of a significant relationship between intelligence quotient and anxiety in autistic children: children with higher intelligence quotient scored higher on measures of anxiety. Studies directly comparing groups of autistic children with and without intellectual disability also supported this conclusion. Most studies employing other designs also supported this finding. Employing a quality assessment framework identified common threats to validity. Many studies used measures of anxiety that were not validated across the samples they measure. This was most notable for those autistic children with an intellectual disability. It is vital that future research determines whether the identified relationship between intelligence quotient and anxiety reflects something important in the mechanism for anxiety in autistic children, or quantifies the lack of sensitivity of our measures of anxiety across different groups.Lay abstractAutistic children often experience higher levels of anxiety than their peers. It can be difficult to diagnose and treat anxiety disorders in autistic children, in part because of the high degree of variability in their underlying abilities and presentations. Some evidence suggests that autistic children with higher intelligence (as measured by intelligence quotient) experience higher levels of anxiety than autistic children with lower intelligence. However, the evidence is inconsistent, with other papers not finding a difference or finding higher levels of anxiety in autistic children with lower intelligence. In this article, we review existing literature to see whether autistic children with higher intelligence quotients have higher anxiety than autistic children with lower intelligence quotients. A systematic search of the literature was conducted which identified 49 papers on the topic. The methods of all the papers were reviewed using an objective quality assessment framework. When combining the data statistically, there was evidence that autistic children with higher intelligence quotients are more anxious than autistic children with lower intelligence quotients. The quality review raised common weaknesses across studies. Most importantly, few studies used measures of anxiety that have been shown to be valid for children with very low intelligence quotients. Similarly, many studies used measures of anxiety that have not been shown to be valid for autistic children. These factors are important because autistic children and those with low intelligence quotient may experience or understand anxiety differently. Future research should use fully validated measures to test whether high intelligence quotient is associated with high levels of anxiety in autistic children.

Procedures for facilitating integration of autistic children in public school settings

Previous research has documented disparities in autism prevalence and the co-occurrence of intellectual disability (ID) with autism for children from immigrant communities. The current study compared autism prevalence and co-occurrence of ID in 8-year-olds across racial/ethnic groups using data from the Minnesota site of the CDC Autism and Developmental Disabilities Monitoring Network, with a focus on two large racial/ethnic groups: Somali and Hmong. Systematic review of health and educational records was performed within a defined geographic area, and data were combined from 2014 to 2016 surveillance years to obtain adequate sample sizes to compare prevalence and co-occurrence of ID across race/ethnicity. Somali children had a higher autism prevalence compared to Hispanic, Hmong, and non-Hmong Asian children, with prevalence ratios (PR) of 1.8, 2.1, and 2.1, respectively. Hmong children had a significantly lower autism prevalence compared to White (PR 0.6) and non-Somali Black (PR 0.7) children. Significant differences in co-occurring ID status were found by race/ethnicity. Identifying subgroups of children with higher prevalence of autism or greater co-occurring ID can inform public health policy and improve outcomes for individuals with autism and their families. Differences in prevalence and co-occurring ID by race/ethnicity may suggest barriers to service utilization.

Introduction: Autism is a lifelong neurodevelopmental condition that is estimated to impact 1 in 44 children. In Aotearoa New Zealand, the rate of autism among Pasifika children and young people (38.6 per 10,000 people) is substantively lower than other ethnic groups (67.5 for European and 47.2 for Māori); however, the complexities associated with Autism diagnosis in Pasifika is unknown.
 Aim: We compared rates of Autism and co-occurring diagnoses of conditions as a proxy for Autism case complexity between Pasifika and NMNP young people (aged 0-24 years) in Aotearoa New Zealand.
 Methods: This national, cross-sectional study was undertaken using data from a national database; the Integrated Data Infrastructure (IDI). Three separate indicators were created to reflect different types of complexity for someone with autism: Asperger’s syndrome (identifies those with lower complexity with fewer demands on support services); intellectual disability (higher needs/greater complexity); ORS funding (higher needs/greater complexity).
 Findings: In this present study, Pasifika in Aotearoa New Zealand had much lower autism identification rates in comparison to Non-Māori Non-Pasifika (NMNP) (53.3 per 10,000 vs 83 per 10,000). After adjusting for socioeconomic differences, Pasifika had significantly lower odds (Odds Ratio (OR) = 0.47) of having an Asperger’s syndrome diagnosis. However, Pasifika had significantly higher odds of having an intellectual disability (OR = 2.23) and being Ongoing Resources Scheme funded (OR = 2.18).
 Conclusions: Using this method within the IDI, Pasifika children in Aotearoa continue to have lower rates of Autism diagnosis; however, they are more likely to have a higher complexity of autism diagnosis.

The researchers designed a delayed intervention start randomized controlled trial to compare improvements in functional communication following augmentative and alternative communication (AAC) interventions. The study compared outcomes from function-based applied behavior analytic (ABA) and eclectic non-ABA forms of classroom-based communication strategies (waitlist control) as well as from high- and low-tech forms of AAC. High-tech AAC consisted of tablet-based communication, and low-tech AAC used an exchange of picture cards. The community-based sample consisted of 29 autistic children with a co-occurring intellectual disability. Participants were randomized to groups (AAC, waitlist control), and each group received approximately 3 months of communication intervention. Multilevel modeling of learner outcomes indicated that the function-based approach produced greater improvements than the eclectic alternative, but significant differences were not observed between outcomes of high- and low-tech forms of function-based AAC. These results are consistent with earlier investigations and provide supporting evidence that both high- and low-tech forms of function-based intervention are effective for use with autistic children with accompanying intellectual disability. Additional discussion is provided regarding further research into how technology is applied and incorporated into behavior analytic programming.

Play, in particular sex-typical play, is important for affective, cognitive, and social development. There is limited research on sex-typical play in autistic children. The few prior studies on this topic relied heavily on reports or involvement of caregivers/parents, did not assess cognitive abilities, and examined a limited number of sex-typical play outcomes. The present study examined sex-typical play in 120 children without intellectual disability (30 autistic boys, 35 non-autistic boys, 20 autistic girls, 35 non-autistic girls) aged 4-11 years. Vocabulary and abstract reasoning were also assessed. Consistently across all five play measures (parent-reported composite play, self-reported activity preferences, self-reported toy preferences, self-reported playmate preferences, and observed toy play), there were medium or large, and mostly significant, differences between autistic and non-autistic boys, suggesting less male-typical/more female-typical play in autistic boys. Autistic and non-autistic boys did not differ in vocabulary, abstract reasoning, or age. No consistent, clear, or significant patterns emerged in comparisons of autistic and non-autistic girls. The more non-conforming play in autistic boys concurs with certain prior findings suggesting that the autistic community is not confined to social norms and shows increased gender diversity. The potential link between the unaltered play in autistic girls and camouflaging is considered.Lay abstractIn the non-autistic community, boys and girls tend to play differently, although these average differences do not apply to all the boys and girls. Little is known about similarities and differences in sex-typical play (e.g. playing with cars, playing with dolls, rough-and-tumble play, playing house) between autistic and non-autistic children. We looked at different aspects of sex-typical play such as toy, activity, and playmate preferences in autistic and non-autistic children without intellectual disability. Different methods including parent reports, self-reports, and play observation were used. We found some average differences between autistic and non-autistic boys. On average, compared with non-autistic boys, autistic boys played in a more non-conforming manner (less male-typical/more female-typical toy, activity, and playmate preferences). These findings are consistent with observations from other research studies suggesting that autistic individuals may defy social norms and express themselves in diverse ways. There were no differences between autistic and non-autistic girls. One possibility is that autistic girls may camouflage, or mask, their non-conforming play preferences, but further research is needed to test this possibility. The findings from this study can help families, professionals, and schools better understand how autistic boys and girls develop.

ABSTRACTBackgroundExtant literature indicates autistic students have lower school attendance compared to the general population. However, there remains considerable heterogeneity between studies, a lack of large population‐based studies beyond the UK and US, and insufficient consideration of age and sex differences in attendance rates. The aim of this study was to examine school attendance among autistic compared with non‐autistic students including stratification by age and sex.MethodsThis was a national retrospective cohort study using population‐level data on students aged 5 to 16 years in 2018. Autism was identified using diagnostic information contained within multiple health datasets. Regular attendance was defined as attending 90% or more of school half days. The association between autism and attendance was estimated using complete‐case 2‐level random intercept modified Poisson regression.ResultsAmong 654 438 students, 8427 (1.3%) were autistic. In adjusted analyses, autism was associated with significantly decreased likelihood of regular attendance (incident rate ratio [IRR] 0.88; 95% CI, 0.86–0.90). Age and sex stratification revealed significant age differences with likelihood of regular school attendance lower for younger autistic students (5–11 years) (IRR 0.85; 95% CI, 0.83–0.87) while sex differences were marginal. The most frequent type of non‐attendance among autistic students was justified (including medical) absence (8.2% of recorded attendance hours for autistic students vs. 5.0% for non‐autistic students).ConclusionThis study provides further, whole‐population evidence of the significant disparities experienced by Autistic students. To improve attendance of autistic students, comprehensive and targeted supports are required to help the student, family and school.

Background: The present study investigates the possible differences between neurotypical children (NT), autistic children, and adults with intellectual disability (ID) related to (i) morality of the agent, (ii) morality of the action, and (iii) culpability in inappropriate situations. Method: Eighty-four Spanish participants (32 NT, 30 autistic children, and 22 adults with ID) responded to a task of moral transgression with an unambiguous structure (bad intention – bad outcome), where the stories were classified as first-order Theory of Mind (ToM) (based on simple desires) and second-order ToM (based on revenge). Results: Autistic group judged similarly to NT group. However, adults with ID had greater difficulty judging the (ii) morality of the action (compared with the autistic and NT group) and (iii) culpability (compared with the NT group). Also, ID adults encountered problems responding the moral questions in the balloon story (second-order ToM) and ice-cream story (first-order ToM). Conclusions: Autistic and NT children were able to make similar moral judgements, however adults with ID did not respond in the same way – as they were more benevolent in their judgements.

ABSTRACTOf the 1 in 36 individuals in the United States who are diagnosed with autism spectrum disorder, nearly 40% also have intellectual disability (ID). The cortex has been widely implicated in neural processes underlying autistic behaviors as well as intellectual ability. Thus, neuroimaging features such as cortical thickness are of particular interest as a possible biomarkers of the condition. However, neuroimaging studies often fail to include autistic individuals with ID. As a result, there are few studies of cortical thickness in autistic individuals across the entire range of intellectual abilities. This study used MRI to evaluate cortical thickness in young autistic children (n = 88, mean age 5.37 years) with a large range of intellectual ability (IQ 19–133) as well as nonautistic, nondevelopmentally delayed (referred to here as typically developing [TD]) peers (n = 53, mean age 5.29 years). We first investigated associations between full scale IQ and cortical thickness in both autistic and TD children. Autistic children had significant negative associations (i.e., thinner cortex, higher IQ) in bilateral entorhinal cortex, right fusiform gyrus, superior, middle and inferior temporal gyri, and right temporal pole that were not present in TD children. Significantly thicker cortex was also observed in these regions for autistic children with ID (i.e., IQ ≤ 70) compared with those without. Last, given the reported correspondence between the severity of autism symptoms and intellectual ability, we compared cortical thickness associations with both IQ and ADOS Calibrated Severity Scores and found these patterns overlapped to a significant degree across the cortex.

Atypical speech prosody has been commonly found among autistic children. Yet it remains unknown whether prosody impairment originates from poor pitch ability in general or whether it is the result of the difficulty in understanding and using prosody for communicative purposes. To investigate whether native Mandarin Chinese-speaking autistic children with intellectual impairment were able to accurately produce native lexical tones, which are pitch patterns that distinguish word meaning lexically and serve little social purpose. Using a picture-naming task, thirteen 8-13-year-old Mandarin Chinese-speaking autistic children with intellectual impairment were tested on their production of Chinese lexical tones. Chronical age-matched typically developing (TD) children were included as the control group. Perceptual assessment and phonetic analyses were conducted with the produced lexical tones. The majority of the lexical tones produced by the autistic children were perceived as accurate by adult judges. Phonetic analysis of the pitch contours found no significant difference between the two groups, and the autistic children and TD children used the phonetic features in comparable ways when differentiating the lexical tones. However, the lexical tone accuracy rate was lower among the autistic children than among the TDs, and the larger individual difference was observed among the autistic children than the TD children. These results indicate that autistic children are able to produce the global contours of the lexical tones, and pitch deficits do not seem to qualify as a core feature of autism. What is already known on the subject Atypical prosody has been considered a maker of the speech of autistic children, and meta-analysis found a significant difference in mean pitch and pitch range between TD children and autistic children. Yet it remains unknown whether the pitch deficits are the result of impaired perceptual-motoric ability or if they reflect failure in learning sentential prosody, which requires an understanding of the interlocutors' mind. In addition, research on pitch ability of autistic children with intellectual disabilities has been scarce, and whether these children are able to produce pitch variation is largely unknown. What this paper adds to existing knowledge We tested native Mandarin Chinese autistic children with intellectual impairment on their production of native lexical tones. The lexical tones in Chinese are pitch variations realized on individual syllables that distinguish lexical meaning, but they do not serve social pragmatic purposes. We found that although these autistic children had only developed limited spoken language, the majority of their lexical tones were perceived as accurate. They were able to use the phonetic features in comparable ways with the TD children when distinguishing the lexical tones. What are the potential or actual clinical implications of this work? It seems unlikely that pitch processing at the lexical level is fundamentally impaired in autistic children, and pitch deficits do not seem to qualify for a core feature of their speech. Practitioners should be cautious when using pitch production as a clinical marker for autistic children.

This study aimed to investigate the incidence of physical illnesses of autistic young children compared with children in the general population. This population-based study included children (aged ≤ 5 years) with newly diagnosed autism (autism group), followed up for 5 years after their autism diagnoses. Data were collected from Taiwan's National Health Insurance Research Database in the period of 2000-2019. Autistic children (n = 45,680) were matched (1:20; by age and sex [assigned at birth]) with a comparison group from the general population (n = 913,600). We calculated incidence rate ratios (IRRs) for physical illnesses diagnosed within 5 years after autism diagnoses. Data were analyzed using Poisson regression models adjusted for person-time and stratified by sex and the presence/absence of intellectual disabilities. The prevalence of almost all illnesses across major organ systems after 1 year of autism diagnosis was higher in the autism group than in the comparison group. The autism group exhibited significantly elevated incidence of cardiovascular disorders, cerebrovascular disorders, and endocrine diseases within 1 year after autism diagnosis (IRR 2.30-71.42). Although the incidence rates of these illnesses decreased over the 5-year follow-up period in the autism group, they remained higher than those in the comparison group, with most IRRs exceeding 2 in the fifth year after autism diagnosis. The IRRs were significant in both autistic male and female children and those with and without intellectual disabilities, although those with intellectual disabilities displayed descriptively larger IRRs. Autistic young children have heightened risks of being diagnosed with physical illnesses soon after their autism diagnoses. Future research should understand the etiological associations between autism and physical illnesses to offer tailored care from early in life.

The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.

Autistic children without intellectual disability will likely experience higher level language and communication difficulties. These may appear subtle, in that they are not immediately evident to those who do not know the child well and may not manifest in all environments. Because of this, the impact of such difficulties may be underestimated. This phenomenon has similarly attracted little research attention, meaning the extent to which subtle language and communication difficulties contribute to the needs of autistic individuals without intellectual disability may be underspecified in clinical services. To offer a detailed exploration of how relatively subtle language and communication difficulties impact on autistic children without intellectual disability and what strategies parents recognize can mediate those negative effects. Twelve parents of autistic children from the target group (aged 8-14 years, attending mainstream school) were interviewed about how subtle language and communication difficulties impact their autistic child. Rich accounts were derived then analysed using thematic analysis. Eight of the children discussed had previously been interviewed independently in a parallel study. Comparisons are discussed in this paper. Parents reported heterogeneous but pervasive higher level language and communication difficulties which universally impacted key areas of the children's function: peer relationships, developing independence and performance in education. Communication difficulties were also universally associated with negative emotional responses, social withdrawal and/or negative self-perceptions. While parents identified a range of ad hoc strategies and naturally occurring opportunities that improved outcomes, there was little mention of the means to address primary language and communication difficulties. The current study showed a number of parallels with child accounts, demonstrating the benefits of collecting data from both sources in clinical and research investigations. However, parents were more concerned about longer term implications of language and communication difficulties and highlighted their impact on the child developing functional independence. Subtle language and communication difficulties, typically identified in this higher ability autistic group, can impact significantly on key areas of childhood function. Support strategies seem to be parent generated and inconsistently applied across individuals, without the benefit of coherent specialist services. Dedicated provision and resources targeting areas of functional need may be beneficial to the group. In addition, the commonly reported association between subtle language and communication difficulties and emotional well-being indicates the need for greater exploration using empirical methods, and joined-up clinical working between speech and language therapy and mental health services. What is already known on the subject There is now a wide understanding of how language and communication difficulties can impact the individual. However, where those difficulties are relatively subtle, for example, in children without intellectual disability and where difficulties are not immediately evident, less is known. Research has often speculated on how identified differences in higher level structural language and pragmatic difficulties might impact on the function of autistic children. However, to date dedicated exploration of this phenomenon is limited. The current author group explored first-hand accounts of children. Corroborative evidence from parents of the same children would add further weight to understanding this phenomenon. What this paper adds to the existing knowledge This study provides a detailed exploration of parents' perspective relating to the impact of language and communication difficulties on autistic children without intellectual disability. It provides corroborative detail that support child accounts of the same phenomenon, indicating the impact on peer relationships, school outcomes and emotional well-being. Parents also report functional concerns around the child's ability to develop independence and this paper demonstrates how parents and children might deviate in their accounts, with parents reporting increased concerns around the longer term implications of early language and communication difficulties. What are the potential or actual clinical implications of this work? Relatively subtle language and communication difficulties can have a significant impact on the lives of autistic children without intellectual disability. Greater service provision for this group is therefore indicated. Interventions could focus on areas of functional concern where language is implicated, for example, peer relationships, developing independence and school success. Additionally, the relationship between language and emotional well-being points to further integration between speech and language therapy and mental health services. Differences found between parental and child reports highlight the need to collect data from both parties during clinical investigations. Parental strategies may offer benefits for the wider population.

Increasing evidence suggests that major depressive disorder (MDD) is highly prevalent in autism spectrum disorder (ASD). The current study is a systematic review of rates of depression in autistic children and adolescents, without intellectual disability. Adhering to PRISMA guidelines, a total of 14,557 studies were identified through five databases (MEDLINE, EMBASE, Cinahl, ERIC, PsycINFO, and Web of Science). Articles were screened for inclusion and exclusion criteria and 10% double coded at each stage. Nineteen studies met criteria and were retained in the review. The reported rates of depression in autistic children and adolescents varied from 0% to 83.3%. We discuss these findings in relation to method of report (self/informant, interview/questionnaire), recruitment status (clinical/community recruited), and age (pre-pubertal/adolescent). Rates of depression vary considerably across studies and do not show a particular pattern in relation to methodology, or age. Our research joins a crucial call to action from the research community for future research to improve the identification of depression in autism, which in turn will aid our understanding of the potentially different characterization and manifestation of depression in autism, to ultimately improve assessment and treatment of depression in autistic children and adolescents. Rates of depression in autistic children and adolescents vary and do not show a particular pattern in relation to methodology or age. Our research joins the call to action from the research community for future research to improve the identification of depression in autistic children and adolescents, which in turn will aid understanding of depression in autism, and ultimately improve assessment and treatment of depression in autistic children and young people. The development of new measures of depression, specifically designed with, and for, children and adolescents with autism, is warranted.