"As Long as There's a Glimmer of Hope, I'm Willing to Try": The Moral Experiences of Parental Pursuit for Autism Therapy in Urban China.

In today's China, countless parents embark on a journey of moral peril in search of treatment for their children with autism, navigating a bustling yet chaotic market of therapies. Based on 13 months of fieldwork in the Pearl River Delta, this study examines how the boom of China's autism therapy industry has plunged parents, who are relentlessly striving for their children's futures, into deeper vulnerability. I view the "ethics of trying" as parental enactment of their moral agency in seeking therapy and reveal how it serves as a moral engine for the industry's growth in the early 21st century, as well as how it leads to moral tragedies for parents as new norms of therapeutic choice emerge with government and professional guidance compelling them to make optimal therapeutic choices within a critical developmental window. Although parental efforts to avoid "agent-regret" can paradoxically lead to significant remorse, the moral tragedy they encounter can also prompt reflection and reevaluation of their approach to their child's condition.

Reducing Depressive Symptoms Among Latina Mothers of Autistic Children: A Randomized Controlled Trial.

This study examines the intervention effect of a culturally tailored parent education program in reducing depressive symptoms among Latina mothers of autistic children. In this two-site randomized waitlist-control study (n = 109 mother-child dyads), a peer-to-peer mentoring (promotora) model was used to deliver an intervention that was designed to increase mothers' self-efficacy and use of evidence-based strategies. We assessed mothers' depressive symptom (CES-D) scores at three time points and used linear mixed models to determine whether their scores significantly changed from baseline to postintervention (Time 2) and at 4 months postintervention (Time 3). Results show that mothers in the intervention group reported a significant decrease in mean depressive symptom scores at Time 2 and that the effect was maintained at Time 3 with intermediate to medium effect sizes. There were no differences in results across sites. Findings suggest that Parents Taking Action, a culturally tailored intervention led by peer mentors, showed a significant effect both immediately after the intervention and 4 months postintervention in reducing depressive symptoms among Latina mothers of autistic children.

Racial and Ethnic Disparities in Community Mental Health Use Among Autistic Adolescents and Young Adults.

PURPOSE: The purpose of this cohort study was to evaluate differences in rate of co-occurring mental health (MH) conditions among transition-age autistic youth (TAYA) who are Black, indigenous, and other people of color, and to identify enabling variables associated with any community MH visit in this population. METHODS: Medicare-Medicaid Linked Enrollees Analytic Data Source 2012 data were used for this study. TAYA 14-29 years old who received fee-for-service Medicare, Medicaid, or both were included. Predisposing, enabling, and need variables associated with both presence of MH conditions and any community MH visit were examined with general linear modeling. RESULTS: N = 122,250 TAYA were included. Black, Asian/Pacific Islander, and Hispanic TAYA were significantly less likely than White TAYA to have a diagnosis of substance-use, depressive, anxiety, attention-deficit hyperactivity disorder, or post-traumatic stress disorders. These groups were also significantly less likely to have had a community MH visit in the past year after controlling for predisposing, enabling, and need variables. Enabling variables associated with greater use of at least one community MH visit included dual enrollment in both Medicare and Medicaid and 12+ months of enrollment in 1115 or 1915(C) Medicaid waivers. DISCUSSION: Service delivery factors are an important area of future research, particularly dual enrollment and coverage disparities for Black, indigenous, and other people of color TAYA. Examining coverage of managed care enrollees, including differences by state, may offer additional insights on how these factors impact care.

Race and Ethnicity Reporting in Occupational Therapy Research Among Autistic Youth.

Historically marginalized racial and ethnic groups are underrepresented in autism research broadly; however, patterns of inclusion in occupational therapy research are unknown.In this secondary data analysis, we examined race and ethnicity reporting across articles included in a systematic review of evidence related to occupational therapy practice with autistic individuals <18 years (2013-2021).Two team members reached >90% interrater coding agreement in race and ethnicity reporting across articles in ADLs/IADLs, education/work, play, sleep, and social participation in clinics, homes/communities, and schools.Intervention outcomes of ADL/IADLs (66.7%) and play (66.7%) had low rates of reporting, while social participation in schools (100%) and education/work (100%) had higher rates of reporting. Sample diversity was greatest among research in schools and most limited in clinic-based settings.Systemic racism that limits individuals' participation in occupational therapy research perpetuates racial and ethnic health inequities among autistic children and adolescents.

Who is included in occupational therapy research among autistic youth?In research that guides occupational therapy practice with autistic youth, we need an understanding of the participants that were included in the research. Historically marginalized racial and ethnic groups are typically not included in the research, so we examined articles that informed occupational therapy practice for autistic youth. We found that different areas of intervention (e.g., play, education/work) had different rates of reporting. The most diverse samples were included in schools and were most limited in clinic-based settings. This is important because systemic racism can influence occupational therapy research and practice.

Short report: Call to action for autism clinicians in response to anti-Black racism.

LAY ABSTRACT: Black autistic people experience anti-Black racism when interacting with service systems and the clinicians in those systems. In this article, we describe the various steps families take to get services and how anti-Black racism makes that process even harder. We discuss research that shows the negative effects of anti-Black racism in autism assessment, treatment, and quality of care. We then provide five recommendations that clinicians should follow to reduce anti-Black racism in the autism field: (1) find Black autistic people and listen to their opinions about your organization, (2) always keep learning about how your profession promotes anti-Black racism, (3) recognize that the process of a clinician learning to be culturally humble takes time and is never "complete," (4) pay attention to all of the steps that families must take to receive autism services and how these steps are even harder for Black individuals, and (5) advocate for your organization to make systems-level changes in their policies and procedures.

Brief Report: Preliminary Outcomes of a Peer Counselling Program for Parents of Children with Autism in the South Asian Community.

Peer volunteers have been found to be effective in delivering psychosocial interventions when they come from the same culture and share similar experiences as participants. We examined the clinical utility (feasibility and preliminary effectiveness) of a community-based, manualized, peer-delivered group counselling program to address the need for culturally responsive counselling for parents of children with autism in the South Asian community. Sixty-three parents (Mage = 43.7 years, 68% mothers) participated in the program, and reported high stable program satisfaction across sessions. Further, parents reported improved mental health and quality of life following involvement in the program, with changes noted even after the first session. Further research is warranted to assess the efficacy of this kind of parent support intervention.

The Ecology of Disabled Minds in Urban Uganda.

In this article, I analyze what I call the ecology of disabled minds in urban Uganda. This analytic notion allows me to account for the way that an interactive web of people, cultural expectations, historical changes, official discourses, and institutional resources collectively contribute to the manifestation of certain forms of human difference as unusual, as cognitive, and as disabilities. Such a notion further allows me to make sense of a set of puzzles I encountered during fieldwork, and to track the emergence of new kinds of minds in contemporary Uganda.

Invisible Autistic Infrastructure: Ethnographic Reflections on an Autistic Community.

In this article, I provide an ethnographic account of an autistic-run community for adults in a North American city. By spending time with each other in loosely structured social interactions, members of this group participate in the ongoing construction of a complex and necessary social infrastructure in the face of often inadequate social and material support from their personal networks, and the larger society in which they live. The work this community does remains largely invisible because it runs counter to dominant biomedical understandings of autism and exists outside of the autism treatment industry.

Etiological investigation of genetic cause in autism spectrum disorder / Investigação etiológica de causa genética na perturbação do espetro do autismo

AIMS: The aims of this study were to characterize the etiological investigation of genetic cause in the autism spectrum disorder and to determine the factors related to its identification. METHODS: A retrospective descriptive study, with an analytical component, included children and adolescents with autism spectrum disorder followed in consultation at a level 2 hospital, between November 2017 and October 2019. The following variables were analyzed: age, sex, age at the first consultation, family history, objective examination, cognitive assessment, etiological investigation of genetic cause and etiological diagnosis of genetic cause. Statistical analysis was performed using the SPSS®v23 program (significance level 0.05). RESULTS: We identified 153 children with autism spectrum disorder, of which 48 underwent a genetic cause investigation: 45 performed microarray analysis (15.6% pathogenic); 42 carried out a molecular study of the Fragile X syndrome (one altered); two performed sequencing of the methyl CpG binding protein 2 (MECP2) gene (one altered). The diagnosis of genetic cause was made in 18.8% of the sample. The identification of the etiology of a genetic cause was related to global development delay/ intellectual disability (p = 0.04) and the presence of relevant family history (p = 0.005). CONCLUSIONS: The diagnostic yield of the genetic study was higher in patients with a global development delay /intellectual disability and in patients with relevant family history.

OBJETIVOS: Os objetivos deste estudo foram caracterizar a investigação etiológica de causa genética na perturbação do espetro do autismo e determinar os fatores que se relacionam com a sua identificação. MÉTODOS: Um estudo retrospetivo descritivo, com componente analítica, incluiu crianças e adolescentes com perturbação do espetro de autismo seguidos em consulta num hospital nível 2 entre novembro de 2017 e outubro de 2019. As seguintes variáveis foram analisadas: idade, sexo, idade na primeira consulta, antecedentes familiares, exame objetivo, avaliação cognitiva, investigação etiológica de causa genética e diagnóstico etiológico de causa genética. A análise estatística foi realizada utilizando o programa SPSS®v23 (nível de significância 0,05). RESULTADOS: Identificámos 153 crianças com perturbação do espetro de autismo, das quais 48 realizaram investigação etiológica de causa genética: 45 realizaram microarray (alterações patogénicas 15,6%); 42 realizaram estudo molecular da síndrome X-Frágil (um alterado); dois realizaram sequenciação do gene MECP2 (um alterado). O diagnóstico de causa genética foi feito em 18,8% da amostra. A identificação de etiologia de causa genética relacionou-se com défice intelectual/atraso global do desenvolvimento psicomotor (p=0,04) e com a presença de antecedentes familiares relevantes (p=0,005). CONCLUSÕES: A rentabilidade diagnóstica do estudo genético foi superior em doentes com atraso global do desenvolvimento psicomotor/défice intelectual associado e com antecedentes familiares relevantes.

Network analysis of autistic disease comorbidities in Chinese children based on ICD-10 codes.

BACKGROUND: Autism is a lifelong disability associated with several comorbidities that confound diagnosis and treatment. A better understanding of these comorbidities would facilitate diagnosis and improve treatments. Our aim was to improve the detection of comorbid diseases associated with autism. METHODS: We used an FP-growth algorithm to retrospectively infer disease associations using 1488 patients with autism treated at the Guangzhou Women and Children's Medical Center. The disease network was established using Cytoscape 3.7. The rules were internally validated by 10-fold cross-validation. All rules were further verified using the Columbia Open Health Data (COHD) and by literature search. RESULTS: We found 148 comorbid diseases including intellectual disability, developmental speech disorder, and epilepsy. The network comprised of 76 nodes and 178 directed links. 158 links were confirmed by literature search and 105 links were validated by COHD. Furthermore, we identified 14 links not previously reported. CONCLUSION: We demonstrate that the FP-growth algorithm can detect comorbid disease patterns, including novel ones, in patients with autism.

California Autism Prevalence by County and Race/Ethnicity: Declining Trends Among Wealthy Whites.

County-level ASD prevalence was estimated using an age-resolved snapshot from the California Department of Developmental Services (DDS) for birth years 1993-2013. ASD prevalence increased among all children across birth years 1993-2000 but plateaued or declined thereafter among whites from wealthy counties. In contrast, ASD rates increased continuously across 1993-2013 among whites from lower income counties and Hispanics from all counties. Both white ASD prevalence and rate of change in prevalence were inversely correlated to county income from birth year 2000-2013 but not 1993-2000. These disparate trends within the dataset suggest that wealthy white parents, starting around 2000, may have begun opting out of DDS in favor of private care and/or making changes that effectively lowered their children's risk of ASD.

University Students' Notion of Autism Spectrum Conditions: A Cross-Cultural Study.

Cultural background might influence knowledge and attitudes regarding autism, influencing willingness to interact. We studied whether beliefs, knowledge, contact, and attitude differed between the UK and Malaysia. With mediation analyses, we studied how these factors influenced willingness to interact. Autism was more often linked to food in the UK, and to upbringing in Malaysia. Knowledge, contact, and acceptance were greater in the UK. When excluding psychology students, Malaysian students were less willing to interact with autistic people. Knowledge and contact appeared to improve acceptance, but acceptance did not mediate the relation between country, beliefs, knowledge, and experience; and willingness to interact. Knowledge and contact regarding autism might improve acceptance in different cultures, but how acceptance could improve interaction is unclear.

Spanish Cultural Validation of the Modified Checklist for Autism in Toddlers, Revised.

The Modified Checklist for Autism in Toddlers-revised/follow-up (M-CHAT-R/F) was developed to reduce the number of cases requiring telephone verification. The aim of this study was to validate a Spanish version of the M-CHAT-R/F in the Spanish public health system. The M-CHAT-R/F was translated, culturally adapted, and then administered to 6625 children. Of the 39 positive screening cases, 15 children were diagnosed with autism spectrum disorder (ASD) and 24 with non-ASD disorders or delays. The sensitivity was 0.79 and specificity of 0.99. Positive and negative predictive values were 0.39 and 0.99, respectively. These results are similar to the English equivalent, though observed prevalence was lower. This study supports Spanish National Health System policy makers to consider a universal ASD screening program.

Inside, outside and in-between: The process and impact of co-producing knowledge about autism in a UK Somali community.

BACKGROUND: Co-production is predicated on equal power-sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co-researchers achieve such equality, from the perspectives of public contributors and researchers. AIM: This paper aims to provide a unique insight into the process of co-production, by weaving personal reflections with principles to evaluate the impact arising from co-produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co-researchers and community organizations. DISCUSSION: Initially, this paper reflects on the process, drawing on principles defined for co-production in health research and combining it with the co-researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co-produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co-produced research can become a catalyst that is dynamic and complex, achieving multi-layered impact.

Narratives About Autism: An Analysis of YouTube Videos by Individuals Who Self-Identify as Autistic.

Purpose The goal of this study was to expand the field's understanding of autism through the analysis of 1st-person perspectives from autistic video webloggers (vloggers). Method This study analyzed the representation of autism in 39 YouTube videos authored by self-identified autistic individuals and published between 2007 and 2015. Consistent with the cross-disciplinary tradition of narrative inquiry, thematic analyses of the video transcripts were conducted. Findings Vloggers were predominantly, but not exclusively, White male adults who spoke mainstream American English and self-identified as experiencing Asperger's syndrome. Key findings included (a) the predominance of a narrative about autism that incorporated features of both the medical model of disability and the neurodiversity paradigm to varying degrees, (b) a trend toward more medical model features across most content areas, and (c) a relatively high prevalence of neurodiversity paradigm features related specifically to language use and the description of autistic traits. Conclusions Implications include the need for clinicians to (a) familiarize themselves with the varying views of autism held within the autistic community, (b) reflect on the language used to talk about autism and listen to how clients and/or their caregivers talk about it, and (c) consider the exploration of potential positive dimensions of autistic traits.

Disparities Based on Race, Ethnicity, and Socioeconomic Status Over the Transition to Adulthood Among Adolescents and Young Adults on the Autism Spectrum: a Systematic Review.

PURPOSE OF REVIEW: Few studies have examined disparities in autism services and functional outcomes over the life course. Transition to adulthood is an especially important developmental period, as it sets up trajectories of adult functioning. This systematic review summarizes patterns of service use and transition outcomes according to race, ethnicity, and socioeconomic characteristics over the transition to adulthood. RECENT FINDINGS: Forty studies were included. Low-income and racial/ethnic minority youth on the autism spectrum were less likely to participate in transition planning meetings, enroll in postsecondary education, find competitive employment after high school, live independently, participate in social activities, and receive health care transition services than their White and higher income peers on the autism spectrum. Racial/ethnic minority and low-income youth on the autism spectrum were more likely to be disconnected from educational, occupational, and social activities upon entering adulthood. Future research should explore the mechanisms underlying these disparities as a first step to addressing them.

Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health.

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.

Understanding and awareness of autism among Somali parents living in the United Kingdom.

Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.

Articulating Sensory Sensitivity: From Bodies with Autism to Autistic Bodies.

Drawing on ethnographic evidence from several communities of autistic adults in the UK, I explore the crucial role of the body and the senses in the enactment of autistic subjectivities. Following their initiation into autism-related social groups, members begin using such concepts as triggers, overload, shutdown, and meltdown to refer to their bodily experiences of distress. They then face the task of investing these ambiguous concepts with meaning, through nurturing an increased awareness to their body's relationship with its material surrounding. This cultivation of sensitivity ultimately culminates in the transformation of their bodies into what might be termed autistic bodies.

Barriers faced by immigrant families of children with autism: A program to address the challenges.

Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder characterized by social, communication, and behavioral deficits. Fortunately, early intervention has proved to be of significant benefit in the lives of children with ASD. However, timely access to health services and support requires equitable access, which is often a challenge for immigrant families. Barriers to equal access and support for immigrant families of children with ASD include cultural beliefs about child development and ASD, delayed diagnosis, access to services, and negative perceptions of services. There is a shortage of studies that explore how to increase understanding and collaboration among the immigrant population and health care practitioners to address these barriers. The barriers can indeed be appropriately addressed with structured programs and cultural models. The objectives of this article are to shed light on how barriers impact outcomes of immigrant children with ASD and to describe a culturally sensitive program model to address the barriers and provide awareness, education, and interventions for these immigrant families. The South Asian Autism Awareness Center in Toronto, Canada is presented as an example of such a model.