Autism

Autism spectrum disorders comprise a complex group with many subtypes of behaviorally defined neurodevelopmental abnormalities in two core areas: deficits in social communication and fixated, restricted, repetitive, or stereotyped behaviors and interests each with potential unique risk factors and characteristics. The underlying mechanisms and the possible causes of autism spectrum disorder remain elusive and while increased prevalence is undoubtable, it is unclear if it is a reflection of diagnostic improvement or emerging risk factors such as endocrine disrupting chemicals. Epidemiological studies, which are used to study the relation between endocrine disrupting chemicals and autism spectrum disorder, can have inherent methodological challenges that limit the quality and strength of their findings. The objective of this work is to systematically review the treatment of these challenges and assess the quality and strength of the findings in the currently available literature. The overall quality and strength were “moderate” and “limited,” respectively. Risk of bias due to the exclusion of potential confounding factors and the lack of accuracy of exposure assessment methods were the most prevalent. The omnipresence of endocrine disrupting chemicals and the biological plausibility of the association between prenatal exposure and later development of autism spectrum disorder highlight the need to carry out well-designed epidemiological studies that overcome the methodological challenges observed in the currently available literature in order to be able to inform public policy to prevent exposure to these potentially harmful chemicals and aid in the establishment of predictor variables to facilitate early diagnosis of autism spectrum disorder and improve long-term outcomes.

Autistic individuals experience higher co-occurring medical conditions than the general population, and yet the estimates of autistic individuals with epilepsy are not updated. Co-occurrence of epilepsy in autistic individuals often aggravated cognitive impairment and increased the risk of poor long-term prognosis. Thus, an updated systematic review and meta-analysis was conducted to study the relevant articles published from inception to 2020, evaluate the prevalence of epilepsy in autistic individuals, and further explore the putative factors influencing the prevalence. A total of 66 studies from 53 articles were included in this study. The results showed that epilepsy is more common in autistic individuals than in the general population. The prevalence of epilepsy in autistic individuals in the clinical sample-based studies was higher than that in the population-based based cross-sectional or cohort studies. The prevalence of epilepsy in autistic adults was higher than that in autistic children. A significantly increased prevalence of epilepsy was detected in the autistic adolescent group (11–17 years old), and a higher trend of prevalence of epilepsy was observed in the autistic pre-school group (⩽ 6 -years-old) than that of the autistic school-aged group (7–10 years-old). The prevalence of epilepsy increased with age, female rate, and low intellectual function rate of autistic individuals. However, the human development index of countries was negatively associated with the pooled prevalence, which could be attributed to the different levels of awareness, diagnostic technologies, and autism-service support worldwide. About 1/10 autistic individuals also had epilepsy, which was common in the clinical setting, adolescents, adults, females, or patients with intellectual disability and less common in the country with high human development index. Thus, these findings provided critical and innovative views on the prevalence of epilepsy in autistic individuals and contributed to the targeted clinical management and preventive measures.

Recent years have seen calls to amplify the voices of autistic people in research about their subjective experiences. Despite this, we know little about how autistic youth experience integrated physical education, particularly in the United States. The term integrated is used to describe a setting in which all students, regardless of educational needs, are educated in the same physical space. In this study, we sought to explore the perspectives of autistic youth toward their experiences in integrated physical education, and the roles of social interactions and relationships with peers in those experiences. Findings noted that several factors influenced the ways and extent to which our participants interacted with their peers during physical education. Unfortunately, most of our participants recalled experiencing bullying, and that physical education offered an environment where bullying was most frequent and comparatively unique compared to other contexts throughout the school day. The locker room, a space linked to physical education, was of particular concern because of a lack of teacher presence. Despite the negative views of and experiences in physical education, there was evidence of participants actively pursuing to connect with peers in this context. However, most instances where participants recalled pursuing friendship were not welcomed from others, which stunted their sense of belonging in this space. Given the role that belonging plays in what it means “to be included,” our research supports emerging ideas that even though autistic students were educated in the same physical spaces as their non-autistic peers, feelings of inclusion were largely absent.

Previous research has suggested that focusing on impairments can be detrimental to the well-being of autistic individuals, yet little research has focused on strengths and positive qualities in autism. Some studies explored “savant skills” (herein referred to as “extraordinary talents”), that is, skills that stand out compared to the general population. These often group everyone who has a specific talent, rather than exploring subgroups with strengths in specific areas. There has been even less research focused on personal strengths (i.e. skills that stand out relative to the individual’s other abilities, but not the general population). To expand this research, we use a sample of 1470 children (ages 4–18 years) from the Simons Simplex Collection without cognitive impairment to examine the relationship between having a parent-reported skill in a specific area and performance on a standardized cognitive test. Almost half (46%) had at least one parent-reported talent and an additional 23% without extraordinary talents had at least one personal strength. Children with these parent-reported skills had different patterns of performance on these standardized tests than children without skills in that area (i.e. visuospatial, drawing, computation, reading, and memory). Specific skills in computation or reading were associated with higher overall performance on the standardized tests. These results emphasize the importance of considering strengths separately by area, rather than combining individuals with different types of strengths. The high number of children with skills in this study underscores the need for more research in this area, particularly using instruments focused on understanding the nuances of these strengths. It is important for future studies to consider these skills in children with cognitive impairment.

‘Participatory autism research’ refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or ‘themes’ discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not ‘count’ as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research.

Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

The prevalence of autism is increasing, and the development of these children and the lived experience of their families have become a global concern. Applied behavioral analytic intervention is proved to be effective in improving their cognitive abilities, language skills, and social and emotional skills, but the service delivery between developed and developing countries is different. A qualitative study was conducted to explore personal experiences with actual practice fidelity of behavior analytic services for children with autism in a Western developed country (United Kingdom) and an Eastern developing country (China). The study found: (1) a lack of support for autism and behavioral analytic services in both countries; (2) applied behavioral analytic intervention was not as widely endorsed by healthcare or educational systems in the United Kingdom; Chinese parents faced challenges around inclusive education and accessing high-quality services and there was a social stigma attached to autism; (3) a limited awareness and application of early intensive behavior intervention in both regions; and (4) intervention fidelity with regards to the practice of one particular aspect of behavioral analytic interventions was similar and increased with ongoing training. This study emphasizes the need to support children with autism, and to consider regional adaptations of evidence-based practice of behavior analytic interventions for the affected population.

We investigated how couples support each other after their child’s autism diagnosis and whether this affects the way they work together to raise their child. We recruited 70 couples raising a child on the autism spectrum. Both partners were asked to complete the same questionnaires measuring how they perceived the experience of having a child on the autism spectrum, how they used their relationship to support each other during stressful situations, how competent they felt completing their parenting tasks, and the coparenting relationship to explore how they worked together as a team when parenting their child. Parents participated in the study 1–36 months after their child’s autism diagnosis. We used statistical techniques that allowed us to see the impact mothers and fathers had on each other. Overall, parents who felt more competent and supported by their partner worked better as a team to raise their child on the spectrum. Fathers invested in the coparenting relationship more when mothers felt more supported by fathers. Mothers invested in the coparenting relationship more when fathers felt more competent parenting their child. Further research is needed to better understand how we can support couples as their child gets older.

Siblings have the potential to shape the developmental trajectories of individuals with autism spectrum disorder. Having siblings has been associated with better social communication skills, less severe non-verbal communication deficits, and improved theory of mind abilities in autism spectrum disorder. This study examined the influence of the presence of a sibling, participant’s position in the birth order, gender of the closest-age sibling, and gender match of the sibling dyad on the rate of growth in adaptive skills from ages 9 to 26 years among individuals with autism spectrum disorder and individuals with a history of non-spectrum developmental disorders. While all participants showed consistent gains in adaptive skill development as a function of age, there was variability in rates of growth based on sibling constellation group membership. Participants with at least one sibling, regardless of other sibling constellation factors, experienced greater rates of growth in adaptive behavior trajectories from childhood to adulthood than participants with no siblings across both Black and White participants, although differences were magnified in Black participants. Furthermore, among participants with siblings, those with male closest-age siblings and those with gender-matched siblings, irrespective of birth order position, demonstrated the steepest growth patterns in adaptive functioning within their respective groups over the 17-year period. Results suggest that siblings may serve an important role in improving the adaptive functioning trajectories and overall outcomes of individuals with autism spectrum disorder.

Autistic people/people with autism spectrum disorder are more likely to experience gender dysphoria. However, the possible longitudinal predictors and underlying mechanisms of this co-occurrence are unclear. To fill this knowledge gap, we assessed 88 people with autism spectrum disorder and 42 typically developing individuals at their average ages of 13.0 (baseline, childhood/adolescence) and 20.2 years old (follow-up, adulthood). At follow-up, their endorsement on the item “I wish I was the opposite sex” was used to evaluate gender dysphoric symptoms. We compared mental health symptoms between adults with and without this item endorsement at the follow-up assessment. We explored parent-reported family and autism characteristics-related predictors in childhood/adolescence to this item endorsement in adulthood. We found that more autistic adults reported the wish to be of the opposite sex than did typically developing individuals. Autistic adults who endorsed this item experienced more mental health challenges, more school bullying and cyberbullying, more suicidal ideation, and worse quality of life. Moreover, parent-reported lower family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. More attention and support should be provided to autistic people regarding gender development and related mental health and quality of life impact, especially during the transition period to young adulthood.

What is already known about the topic? All people can benefit from education about how to have healthy friendships and dating relationships. But specific interventions on relationship skills—like respecting boundaries, identifying warning signs of abuse, or talking about sexual preferences—are too rare, particularly for autistic individuals. The goal of this study was to collect formative data from autistic emerging adults to help create a new, six-session workshop for autistic young adults to support healthy peer relationships. Twenty-five autistic youth aged 16–22 years old were interviewed.

What this paper adds? The participants described a need for more and better information about how to support lasting friendships, deal with their anxiety about relationships, and know when friendships or dating relationships were reciprocal and rewarding versus unhealthy.

Implications for practice, research, or policy. The results reveal a need for a new and effective intervention that supports healthy relationship skills for autistic people.

There has been a rise in the observed prevalence of autism spectrum disorder among children. Existing studies show the share of counties with a treatment facility that offers care for children with autism spectrum disorder. However, no estimates exist of the share of US outpatient mental health treatment facilities that provide services for children with autism spectrum disorder. We identified key facility-level characteristics in offering mental health care for children with autism spectrum disorder. We used a telephone survey to contact almost all outpatient mental health treatment facilities in the contiguous United States. We asked the facilities if they provided mental health care for children with autism spectrum disorder. We took the results of this survey and estimated multivariable regressions to examine county- and facility-level predictors of offering services. We found that over half (50.3%) of the 6156 outpatient facilities reported offering care for children with autism spectrum disorder. Non-metro counties, counties with a lower percentage of non-White residents, counties with a higher percentage of uninsured residents, and counties with a higher poverty rate had fewer outpatient mental health treatment facilities providing care for children with autism spectrum disorder. Facilities accepting Medicaid as a form of payment, offering telehealth, and private for-profit facilities were more likely to provide services for children with autism spectrum disorder. Because only half of outpatient mental health treatment facilities offer care for children with autism spectrum disorder, public health officials and policymakers should do more to ensure that this vulnerable population has access to mental health services.

Among people with autism—all who have the same diagnosis—there are major differences on a nearly limitless number of areas, such as language, daily living skills, intellectual ability, sensory difficulties, and physical and mental health diagnoses. Despite these many differences, the targeted outcomes of intervention studies are often measured the same way across autistic adults, including outcomes such as getting a job, achieving greater independence, or getting more services. People have different goals and abilities, and it is important to have a way for intervention studies to measure outcomes in a way that is more personal to each individual. To address this issue, we developed a new approach—called “Goal Attainment Scaling—Community-based” or GAS-CB—to measure individualized outcomes across different research settings. In this article, we describe the need for individualized outcomes in autism intervention research and current approaches to gathering these outcomes, with our discussion focused on a method called goal attainment scaling. We then describe reasons why current goal attainment scaling approaches might not be useful in intervention research that takes place in the community. Finally, we discuss a new goal attainment scaling approach (GAS-CB) that can be flexibly used for research participants with very different characteristics.

Preschool special educators’ are more likely to choose an educational practice to teach a young child with autism a social communication skill if they have positive beliefs about it. We asked preschool special educators to read a description of an autistic student and their social communication goal and imagine they were the student’s teacher. We then asked them to pick one of five practices to teach the student. We also asked them questions to understand their attitudes about, confidence in their ability to use, and their perception of their coworkers’ support of each practice. There are many research-based practices that a teacher could use to help children learn, and preschool teachers often make these decisions for their students. Teachers’ beliefs varied in how supportive they were of each practice, and research shows people are more likely to do something that their beliefs support. In this study, they had more supportive beliefs and were more likely to use some practices, like naturalistic intervention, than other practices, like discrete trial teaching. By knowing this, researchers can help teachers use practices that their beliefs support and help change teachers’ beliefs to be supportive of a practice they may need to use.

Autistic people can find it difficult to find and keep a job, and fewer autistic people are employed compared with people from other disability groups. There is not enough research in this area, especially research that directly compares the experiences of autistic and non-autistic colleagues starting in an organisation at the same time. Our study looked at the experiences of autistic and non-autistic people taking part in an internship at Deutsche Bank, UK. We spoke to the interns before the internship began, and again once it had finished. We also asked the interns’ hiring managers about their experiences of the internship. We used interviews and online questionnaires to find out people’s views. Before the programme began, managers of autistic interns were more worried about the internship than managers of the non-autistic interns. They were worried about providing the right level of support, communicating successfully and treating all their employees fairly. At the end of the internship, everyone felt that the internship was a success. Managers of autistic interns explained how the experience had made them better managers. Both groups of interns and said that they benefitted from clear communication and would have likes more support. Managers of autistic interns spoke about dividing tasks up into smaller chunks and being flexible in their communication were helpful when working with the autistic interns. More work is needed to make sure that autistic interns are integrated alongside non-autistic peers. One way to make this happen might be to create guides for managers.

Autistic adults without a suspected intellectual disability reported several motor features such as having tremors, and stiffness in one’s legs which are considered to be part of a complex of motor features called parkinsonism. This so-called parkinsonism was remarkably prevalent in middle-aged and older autistic adults in two independent studies (Dutch study: 50–81 years, 183 males, 113 females, all adulthood diagnoses; the USA study: 50–83 years, 110 females, 109 males, majority adulthood diagnosis). Parkinsonism can be part of the progressive motor disease—Parkinson’s disease. Therefore, it is important that future studies, including in-person neurological assessment, determine if (and if so, why) autistic adults who report these motor features are at increased risk for developing Parkinson’s disease.

Many children and young students with autism have difficulties learning how to read. This study investigated early literacy development in children with autism spectrum disorder during their first year of formal schooling. The study found that children with autism spectrum disorder differ greatly on their early literacy skills, with some showing strengths in their understanding of the alphabet, spelling, and reading words. Other students in the sample had difficulties with these early reading skills. The findings of this study are important to better understand the most effective way to teach early literacy skills to children with autism spectrum disorder.

Previous research has shown that relatively few adults with autism have a paid job or live on their own. However, outcomes also vary a lot and may depend on many different factors. In this study, we examined the level of functioning and happiness of 917 adults with autism (425 men and 492 women) aged 18–65 years. Most of them were of average to high intellectual ability. Over 6 years, we measured whether they had a paid job, close friendships and lived on their own (i.e. their objective functioning). We also measured how happy they felt. Objectively, most autistic adults did fairly to very well. Those with better objective outcomes (e.g. those with paid work) also tended to be happier. Most adults improved in objective functioning and happiness over 6 years. Participants with a lower intellectual ability, more autism traits, mental health problems and younger age had poorer objective outcomes. Participants with more autism traits and mental health problems were less happy. Autistic men and women functioned at similar levels and were equally happy. We found important factors that predict a better (or worse) outcome for autistic adults. Overall, compared with some previous research, our findings give a more positive picture of the outcomes for autistic adults with average to high intellectual abilities.

Depression is more common in autistic adolescents than their neurotypical peers, but the effects of diagnosis and sex on the severity and types of depressive symptoms remain unclear. The study explored diagnostic- and sex-based differences in depressive symptoms in 212 autistic and neurotypical early adolescents. Results show that autism spectrum disorder and female may pose elevated risks, and depressive symptoms related to interpersonal problems and negative self-esteem are more frequent in autism spectrum disorder. Autistic males and females endorsed similar severity and type of depressive symptoms, but unique differences emerged when compared to sex-matched neurotypical peers. Exploratory analyses in a clinical subsample of early adolescents with elevated depressive symptoms (Children’s Depression Inventory, Second Edition, Total T-score ⩾60) revealed more endorsement of beliefs of worthlessness in autistic early adolescents. Findings suggest initial intervention targets for treating depression in autistic early adolescents.

COVID-19 caused many autism spectrum disorder caregiver-coaching studies to move to telehealth. Telehealth can increase the diversity of people who take part in research. This matters because most autism spectrum disorder studies have included people who have resources, are White, and live in North America and Europe. When study participants are similar, it is hard to understand which interventions can help different types of people who live in different parts of the world. While telehealth may allow more people to take part in research, it needs to “fit” the local context and consider the “digital divide” because many people around the world have no access to computers and the Internet. This short report describes changes to two research studies that include caregiver coaching based on the Early Start Denver Model in the United States and South Africa. We describe how the local context, including technology and Internet access, guided the telehealth approach. By doing so, we highlight ways to make telehealth available to more people around the world. The pandemic can help us understand how telehealth can “fit” diverse places and support high-quality research. It is important that study changes are tracked and we assess how well the changes work. COVID-19 telehealth changes to caregiver coaching can result in new ways to reach more people around the world.

It is well known that some people with autism have difficulties recognizing faces. It is generally thought that this is not because autistic individuals cannot perceive faces, but because autistic individuals have greater problems than people without autism in remembering faces. Here, we worked with a group of autistic adults and a group of non-autistic adults to test their ability to perceive and remember faces. We also asked each person to report any difficulties that they have with recognizing faces in everyday life. We find that, as a group, people with autism have difficulties with both remembering and perceiving faces, and report more problems recognizing faces in everyday life. However, it is worth noting that we observed a wide range of scores in the group of people with autism, with some autistic participants scoring as well as the group of people without autism.

Currently, the quality of care for autistic individuals is not good. Many care services for autistic individuals are not well coordinated, nor are they tailored. We wanted to find out a better model for autism care and believed that the autism community knows where these programs are. So, we had conversations with and surveyed 55 autistic adults, family members, clinicians, and researchers. They shared 90 innovative autism care programs that had been collaboratively designed with patients and families and that are likely to improve the quality of life of autistic individuals and their families. We then narrowed down the 90 nominated programs to 15 programs across the United States by applying researcher-selected criteria, such as providing services actively and having data on program effectiveness. We compiled a list of these innovative, quality autism care programs.