Autism

In 2010, Saudi Arabia became the first country from the Gulf Cooperation Council states to join the World Mental Health Survey Initiative, which collaborates with Harvard University and has undertaken over 33 countries. The Saudi National Mental Health Survey revealed that 80% of Saudis with severe mental health disorders do not seek treatment. Considering the strong evidence set out in Saudi national study and the recommendations for future research, this systematic literature review was initiated to examine the most studied neurodevelopmental disorders reported in the Kingdom of Saudi Arabia to explore public knowledge, attitudes, and behaviors. Findings have shown that attention deficit hyperactivity disorder and autism spectrum disorder have been the most studied neurodevelopmental disorders in Saudi Arabia since 2010. However, various groups in Saudi society, including healthcare professionals, medical students, and the general public, lacked knowledge about these health conditions, often leading to stigmatized attitudes and behaviors toward people with attention deficit hyperactivity disorder and autism spectrum disorder. However, demographic data showed that most of the studies were carried out in the Central and Western provinces. More research is needed in all regions of the Kingdom of Saudi Arabia to contribute to the knowledge about mental health conditions of attention deficit hyperactivity disorder and autism spectrum disorder children and their parents to increase knowledge about neurodevelopmental disorders and mental health disorders in the Kingdom of Saudi Arabia, thereby enabling people to rethink their attitudes and behavior.

Black/African American people in the United States who have a diagnosis of autism often experience service-related disparities, including not having the same access to high-quality autism and related care (e.g. behavioral interventions), and are less likely to have sustained treatment engagement across their lifespan. While interventions to support autistic people are typically designed to be universal, there is concern that these interventions not being tailored to the Black/African American population could reduce the overall impact due to a lack of responsiveness to the needs of the Black children or families who receive the intervention. The current systematic review summarized research on interventions developed for the Black autism community, including Black children with autism and their caregivers. After a comprehensive, systematic search, eight peer-reviewed publications were identified that met the study’s inclusion criteria. The majority of the interventions were tailored to Black caregivers of children with autism. Autism researchers demonstrate different strategies for engaging Black caregivers in culturally responsive ways; however, more research into these interventions is needed in order to assess their effectiveness. In addition, there are still limited interventions adapted to be culturally responsive to Black/African American autistic people. The Cultural Adaptation Checklist framework is a novel approach with promise to become the standard for adapting interventions to meet the needs of culturally diverse groups. Cultural responsiveness is an important facet in the development of interventions that produce optimal outcomes for the range of diversity in the United States and is an important step to achieving equitable autism research practices.

Oral care–related challenges are well documented in the autistic community; dental care remains one of the most prevalent unmet health needs among autistic individuals. This review examined interventions designed to improve oral health in autistic individuals from children and adult populations. Through a systematic process, 36 studies were identified. These studies focused on improving home-based oral care skills and routines and reducing fear, anxiety, and/or negative behaviors in the dental clinic. Studies incorporated different types of techniques for facilitating oral care practice, including preparatory interventions to support home-based hygiene activities or improve an approaching dental encounter (n = 29), most often using visual aids, and/or strategies to manage behavioral difficulties exhibited in the dental office (n = 17). Some studies used both approaches (n = 10), combining visual aids prior to a visit with behavior management. Using an evidence-based rubric, we reviewed the methodological quality of the studies and found that most were only “adequate” (n = 8) or “weak” (n = 23) in reporting their evidence. This review has two key findings: (1) there is support for preparatory home-based visual interventions to improve toothbrushing and/or ready patients for dental visits; and (2) distraction or sensory-reducing interventions may also improve experiences in the dental clinic. Only one study purposefully recruited autistic adults, and no studies included intervention elements tailored to race/ethnicity, culture, and/or socioeconomic status. This review highlights the need for more studies investigating the impact of oral care–related interventions for autistic individuals of all ages and identifies a gap in interventions for autistic adults and those from minoritized populations.

Parenting can be challenging for any parent, particularly for those parenting autistic children. Research has shown that being kind, accepting, and mindful toward oneself during suffering, a concept known as self-compassion, can help enhance mental health. However, it is not fully understood how self-compassion benefits parenting experiences for parents of autistic children. Therefore, we conducted a study involving 178 parents of autistic children and 178 of autistic children to explore the associations between self-compassion, mental health, and parenting experiences. We found that parents of autistic children reported less self-compassion compared to parents of non-autistic children. For both groups of parents, self-compassion was linked to lower levels of ill-being and parenting stress, as well as higher levels of well-being and parenting competence. In parents of non-autistic children, both ill-being and well-being played a mediating role in the relationship between self-compassion and parenting experiences. However, in parents of autistic children, only well-being was found to mediate this relationship. These findings emphasize the importance of self-compassion and well-being in improving parenting experiences for parents of autistic children.

Play is often included in autism diagnostic assessments. These assessments tend to focus on negatives and how people who are not autistic interpret observable behaviours. It is important to take a neurodiversity-affirmative assessment approach. This involves focusing on what autistic people say and looking at strengths and needs. We wanted to find out how autistic adults experience diagnostic assessments that include play. We asked autistic and non-autistic people to help us design our study and interview questions. We then interviewed 22 autistic adults to find out what they think about the use of play in assessments. We used a qualitative method called interpretative phenomenological analysis to analyse the data. Autistic adults told us about the different ways play was included in their diagnostic assessments. For example, some completed a diagnostic tool called the Autism Diagnostic Observation Schedule. Autistic adults also talked about the importance of considering how autistic people are different to each other. For example, we found that play may not be useful for assessing women or girls who mask. This suggests that professionals should adopt a personalised approach to diagnostic assessments that use play catering to each person’s needs. Our findings also suggested that professionals should assess strengths and differences as well as needs.

Research shows that people with autism spectrum disorder and attention-deficit/hyperactivity disorder often have sleep issues and problems with the body’s natural daily rhythms, known as circadian rhythms. By exploring the genetic variants associated with these rhythms and the conditions, this study reveals that these rhythm changes and sleep patterns are directly linked to autism spectrum disorder and attention-deficit/hyperactivity disorder. It found that the timing of one’s most active hours can increase the likelihood of having both autism spectrum disorder and attention-deficit/hyperactivity disorder. Importantly, it also shows that good sleep quality might protect against autism spectrum disorder, while disturbed sleep in people with attention-deficit/hyperactivity disorder seems to be a result rather than the cause of the condition. This understanding can help doctors and researchers develop better treatment approaches that focus on the specific ways sleep and body rhythms affect those with autism spectrum disorder and attention-deficit/hyperactivity disorder, considering their unique associations with circadian rhythms and sleep patterns. Understanding these unique links can lead to more effective, personalized care for those affected by these conditions.

Many previous studies reported that autistic children have fewer social connections. Yet, recent studies also show that autistic children more often feel lonely in school than allistic (i.e. non-autistic) children. This outcome seems to go against the traditional view that autistic children do not desire to have social connections. Therefore, this study aimed to find out how autistic and allistic children feel about their social connections. We included 47 autistic and 52 neurodiverse-allistic children from two special education primary schools (aged 8–13 years). We tested their social connections and loneliness in school, through a new approach. This new approach includes questionnaires, and sensors for tracking social contacts on playgrounds during school breaks. We found that allistic children felt more loneliness when they spent little time in social contacts during school breaks. Yet, autistic children felt more loneliness when their peers did not like to play with them. For these autistic children, feelings of loneliness may go beyond face-to-face contacts. Being liked as part of a peer group was key. Understanding differences in children’s needs can lead to a more effective design for a welcoming school climate.

Factors influencing the implementation of parent-mediated intervention are insufficiently studied. This study examines for the first-time factors of implementation into clinical practice across the world of Pediatric Autism Communication Therapy, an internationally disseminated, evidence-based, parent-mediated therapy. From both the parents’ and the professionals’ perspectives, parents attitudes (e.g. self-reflection abilities and videotaping management) and life-circumstances (e.g. stressed families condition and time) were central factors. In this type of therapy, the target is a child’s development; still, this improvement is dependent on the parent’s behavior when interacting with their child. What’s more, Pediatric Autism Communication Therapy method (video reflection, empowerment of parent, play-based) was enabler according to most of the parents. And more, most professionals report factors linked to the Implementation Process that is planning, execution, reflection and assessment in implementation of a new therapy. Indeed, the professionals underlined barriers related to the population seen in practice, flexibility of schedule, support from colleagues and manager. All these factors could be improved and addressed with a formal implementation plan including factors related to the parents of each country.

Recent research has revealed informative patterns about health, mental health, self-help skills, autism symptoms, and social skills during the transition to adulthood for autistic individuals. This study expands on these findings by examining how positive affect (e.g. excited) changes from age 15 to 30 years using a group of individuals first referred for autism at an early age. We also examined the agreement between caregiver-report and self-report on positive affect. We found different patterns of stability and change in positive affect across the transition to adulthood that related to differences in autism severity, cognitive abilities, self-help skills, as well as social and work participation in adulthood. The agreement between caregiver-report and self-report was strong in adolescence but became much weaker after the individuals were 23 years. These results have implications for how we measure happiness, positive emotions, or other internal experiences of autistic individuals.

Caregiver coaching is an evidence-based practice for young autistic children, but it is not widely used in community-based early intervention services. Previous research has explored why caregiver coaching is not widespread in early intervention, but only from the perspective of early intervention providers. Caregivers, providers, and administrators are all involved in the decision of whether to use caregiver coaching in early intervention. Therefore, it is important to include all perspectives in research regarding this practice. In this study we interviewed 20 caregivers of autistic children, 36 early intervention providers, and 6 administrators from early intervention agencies and asked questions about their perspectives regarding the use of caregiver coaching in early intervention. We did this to figure out what factors help and hinder the use of caregiver coaching in this setting and to see how caregivers, providers, and administrators agreed or disagreed on these factors. All participants agreed that caregivers’ attitudes and expectations can influence whether caregiver coaching is used. In addition, all participants agreed that when caregivers and providers collaborate and have a strong working relationship, it can facilitate the use of caregiver coaching in early intervention. Other factors, such as caregiver stress and provider flexibility were also discussed. Based on these findings, we suggest strategies that can be used to possibly increase the use of caregiver coaching in early intervention for autistic children and their families.

Parents of autistic children may have limited time and resources to participate in physical activity, a key aspect of health. Previous studies have been small and included mostly mothers, rather than fathers. No studies have examined physical activity in these parents during another pregnancy, when physical activity is especially important for maternal and fetal health. We aimed to fill this gap by examining physical activity levels among mothers and fathers caring for an autistic child before and during a subsequent pregnancy. We used data from a study which followed pregnant individuals who already had a child with autism. We asked mothers and fathers to report their levels of moderate and vigorous physical activity. We found that mothers and fathers of autistic children reported lower physical activity levels than the national average and were unlikely to meet Physical Activity Guidelines for Americans. Pregnant mothers were the least likely to participate in physical activity, particularly if their autistic child scored highly on a measure of autistic traits. Given that parental physical activity has benefits for parents and children, family-based interventions may be needed to help support parents’ physical activity levels.

Working memory is an important skill for school success, and it involves holding information in our memory while using it to solve complex problems. However, autistic children often have difficulties with working memory tasks. Also, kindergarteners on the autism spectrum tend to be less school-ready compared with their peers. In addition, children from disadvantaged backgrounds tend to struggle more with working memory and school readiness skills. All preschool-age children on the autism spectrum in the United States are entitled to pre-kindergarten (pre-K) education. However, it is unclear whether attending pre-K helps with children’s working memory development in the long run. This study tested whether attending pre-K benefits children’s working memory development in the long run. It also tested whether pre-K is especially helpful for autistic children’s working memory development. It was found that children who attended pre-K outperformed their peers who did not attend pre-K during the first 2 years of elementary school. However, after first grade, such benefits diminished. Importantly, autistic children who attended pre-K did not demonstrate advanced working memory immediately in kindergarten, but they started to outperform their autistic peers who did not attend pre-K during first grade to third grade. This finding highlights the importance of pre-K education for autistic children in particular. It is also important for educators and parents to understand autistic children’s unique learning paths that may be different from non-autistic children. This article discusses specific ways for educators to take full advantage of the long-lasting benefits of pre-K education in autistic children’s working memory development.

Kazakhstan has witnessed a significant increase in the number of Autism Spectrum Disorder cases due to the implementation of mechanisms for early detection. However, despite these efforts, accessing quality services and effective interventions for individuals with Autism Spectrum Disorder remains challenging. While the government has implemented various policies to address the impact of Autism Spectrum Disorder on the labour market, especially for those with disabilities, the effectiveness of these policies needs to be evaluated. Therefore, this article aims to estimate the loss of productivity by calculating the cost of non-working for parents of children with Autism Spectrum Disorder. To achieve this goal, we combine data from official sources with data from our own survey to estimate the loss of productivity using human capital models. In addition, we conduct policy simulations to assess the impact of the existing policy implemented in Kazakhstan that recognises the time of caring for children with Autism Spectrum Disorder and disability as working in the paid labour market. Our results reveal that the productivity loss is substantial, with mothers of children with Autism Spectrum Disorder being particularly affected. Furthermore, based on the outcomes of the policy simulations, it becomes evident that policies solely targeting parents of children with Autism Spectrum Disorder and disability are insufficient to address the labour market gaps and the consequent loss of productivity. To effectively mitigate the impact of Autism Spectrum Disorder in the labour market, a more comprehensive approach is needed. This approach should encompass a broader range of interventions and support mechanisms, including those for individuals without disabilities and parents of children with Autism Spectrum Disorder.

This study explores the mental health journey of fathers with children on the autism spectrum. Little is known about mental health over time for these fathers. This research spans six-timepoints from when children were aged 4 to 14 years, to track fathers’ mental health. This study had three aims: (1) report estimates of fathers’ psychological distress across 10 years of child development; (2) identify separate courses of psychological distress over time; and (3) identify early risk factors associated with these courses. This study used data from 281 fathers of children on the autism spectrum who took part in the Longitudinal Study of Australian Children. Using a statistical method to group fathers based on their psychological distress scores over 10 years of child development, the results showed that two groups best explained the data; this included a group of fathers who experienced low levels of psychological distress over the 10 years of child development (84%), and another group of fathers who experienced heightened psychological distress across this time (16%). Further analysis showed that fathers who had an ongoing medical condition and higher levels of interparental conflict with their partners were more likely to be in the heightened psychological distress group. These findings show that almost one in six fathers deal with persistent psychological distress throughout their child’s early childhood and into early adolescence. This study advocates for interventions focusing on improving fathers’ physical health and the couple relationship as ways to positively impact fathers’ mental health in the long run.

The Autism Stigma and Knowledge Questionnaire (ASK-Q) was developed to assess autism knowledge across cultural contexts. The current study aimed to examine cultural equivalence of the measure using a large, international database. These analyses identified 18 items in need of examination for removal or revision. A team of autism experts recommended several additional changes to reduce stigma and increase cross-cultural sensitivity and accuracy of the items on the measure. These changes resulted in a briefer measure with maintained statistical support.

Many families seek access to evidence-based therapy to support their child’s learning. Naturalistic developmental behavioral intervention is a set of practices that use a child’s natural motivation and interest to teach skills in everyday routines. Many families find naturalistic developmental behavioral interventions appealing and they have been proven to be effective. However, families may not be able to enroll in naturalistic developmental behavioral intervention–based programs due to the limited availability of trained service providers. Telehealth is the use of technology to engage with care providers, including doctors and therapists. Telehealth is an effective tool for improving access to services, especially for people in rural and underserved communities. Telehealth offers a way for providers to connect with families but it does not address the low numbers of trained providers. In this article, we share a statewide model developed to increase access to naturalistic developmental behavioral interventions for families while increasing training opportunities for early intervention providers. Through this model, expert consultants worked with caregivers and providers via telehealth for a brief series of visits. During these visits, consultants taught caregivers and providers strategies based in naturalistic developmental behavioral interventions. Feedback from caregivers and providers, along with improvement in child skills, show that this model was effective and acceptable.

Selective attention to auditory input is reflected in the brain by an electric amplitude called the P3b amplitude, which is measured using electroencephalography. Previous research has shown that children and adolescents with autism have an attenuated P3b amplitude when they have to attend specific sounds while ignoring other sounds. However, it is unknown whether a reduced P3b amplitude in autistic children and adolescents is associated with their autism features, daily functioning and/or cognitive functions. This study aimed to examine these questions. Therefore, we assessed selective attention to auditory input in 57 children with autism aged 7–14 years and 57 neurotypically developing controls while measuring their brain activity with electroencephalography. Participants further underwent cognitive assessment, and parents reported on autistic traits and daily functioning. As expected, children with autism had lower P3b amplitude compared to their neurotypical peers. Importantly, an attenuated P3b amplitude was associated with more parent-reported social-communication problems and difficulties with daily functioning. Children with autism further had reduced processing speed of visual input, which also was coupled to a lower P3b amplitude. In conclusion, we found attenuated P3b amplitude in children with autism performing an auditory selective attention task, which was related to difficulties with processing visual input and allocating attentional resources critical for social and daily functioning. The results suggest that autistic children are more vulnerable to being disturbed when the environment is filled with conflicting sensory input.

We wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study’s open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers’ psychological well-being.

There is a higher prevalence of self-harming behaviours within the autistic community than is experienced by the general population, in addition to co-occurring mental health conditions such as anxiety and depression. To date, research has focused on quantifying and categorising the numbers of autistic people self-harming, what types of harming they are engaging in and what functions the harming performs. Autism research has historically focused on the opinions and experiences of parents, carers and clinicians, with a belief that autistic people are unable to present their own experiences and thoughts accurately. This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. The analysis discovered that self-harming behaviours are used by autistic people as a way of coping with anxiety and depression and to relieve the build up of stress and sensory or mental overload that can otherwise lead to a meltdown. Repetitive behaviours such as stimming are also used to relieve the buildup of sensory over-stimulation and anxiety, but both stimming and meltdowns can also be self-harming behaviours if they cause tissue damage, and are believed to be childhood presentations which are stigmatised if expressed by an autistic adult. Many autistic adults find it hard to get help with self-harming behaviours because they are not taken seriously by professionals, as it is seen as part of autism and cannot be helped, or the professionals do not have enough knowledge of autism.

Primary care providers often screen for autism during well child visits in the first few years of life and refer children for diagnostic evaluations when needed. However, most children do not receive a diagnosis until years later which delays access to services. Racism, socioeconomic status, and other systemic inequalities that limit access to health care further delay diagnostic evaluations. Mental health clinicians who work in primary care clinics can help address barriers to accessing diagnostic evaluation services once they are recommended by their primary care provider. However, mental health clinicians who work in primary care typically do not have training in diagnosing autism. The goal of this study was to evaluate a program training mental health professionals working in an urban primary care setting, primarily serving Black and Latinx families insured by Medicaid, to provide autism diagnostic evaluations. Two hundred and fifty children completed evaluations through the Autism in Primary Care (APC) program. The wait time to access an evaluation through APC was significantly shorter than through standard avenues of care (e.g. referring to a separate autism clinic). Referring primary care providers and caregivers endorsed high levels of satisfaction with the program. Conducting autism evaluations in primary care settings offers a promising opportunity to improve earlier diagnosis and treatment access for families, reduce inequities in care, and increase caregiver and child well-being.

What is already known about the topic? Autistic people are reported to offend at lower or comparable rates to non-autistic people. However, autism is overrepresented within male prisons due to a number of suggested reasons including an increased chance of being caught and a lack of autistic sensitive interventions which lead to longer stays in prison. To the authors’ knowledge, no papers currently exist focussing on autistic females in prison. What does this paper add? To the authors’ knowledge, this is the first piece of research to solely include autistic females in prison settings. This research provides an estimate of how many autistic people are in female prisons. All 12 female prisons in England were contacted. Data provided indicate a prison-reported female autism rate of 4.78%. This prison-reported female autism rate is 13.7 times higher than the prevalence of autistic females in the general population. Implications for practice research or policy? Autism is overrepresented in female prisons; however, to the authors’ knowledge no current research exists on this group to understand their needs or experience. Autistic females often have differing requirements to males and the lack of research highlights the need for future research to investigate areas such as factors which increase the risk of offending, offences typically committed and the female autistic experience of the Criminal Justice System.