Autism最新文献

Lay abstract: There are many ways to refer to an individual who is on the autism spectrum. A recommended approach has been to use person-first language (PFL), such as "person with autism." A different approach is to use identity-first language (IFL), such as "autistic person." Recent studies focused on different groups of people (e.g. autistic self-advocates, parents, and practitioners) show that some groups prefer PFL (practitioners) while others prefer IFL (autistic self-advocates). However, less is known about how researchers use PFL and IFL in academic writing (e.g. studies published in scientific journals) involving autistic research participants. Our study examined 12,962 journal abstracts (short summaries of scientific articles) from 11 academic journals that publish autism research findings. We wanted to know (a) about the use of PFL and IFL across abstracts, and (b) how PFL and IFL use has changed annually over time. We examined data for all journals individually and grouped together. Our findings showed that journal abstracts generally use PFL (65%) with some using either IFL (16%) or both PFL and IFL (20%). However, journals varied, with some showing a clear majority for PFL and a couple for IFL. Examining trends over time across journals showed that while PFL appeared to be the majority for most journals, IFL has steadily increased in the recent few years. Our study helps us understand how autism researchers write about autistic individuals and offers implications for helping researchers intentionally make choices about the language used in their autism research studies.

Lay abstract: Many autistic students experience anxiety, but there is little research that explores how anxiety might affect autistic students in the school environment. In this study, 45 autistic students, aged 7 to 17 years, completed an online sorting activity to tell us how anxiety impacts them at school. The students were given 21 statements about possible social and academic effects of anxiety (for example, 'When I'm worried it's hard to start my schoolwork' or 'When I'm worried I talk less to my friends or other students'), and sorted them based on how much they agreed each statement was true for them. The three statements most highly rated as being impacted by anxiety were difficulties related to schoolwork. By comparing the information provided by students, six smaller groups of students were identified who sorted the statements in a similar order. These groups show that anxiety affects different autistic students in different ways, including missing school or activities, communicating less with friends and teachers and finding it harder to complete schoolwork. This online sorting activity enabled autistic students themselves to report how anxiety affects them at school. The results suggest that it is important to provide individualised support for autistic students who experience anxiety at school, to reduce the impact of their anxiety on their participation, communication and interactions, and schoolwork. Further research about the effects of anxiety on the academic outcomes of autistic students is also needed.

Lay abstract: The current demand for autism diagnostic services exceeds the ability of the workforce to assess and diagnose children in a timely manner. One solution may be to equip primary care providers (PCPs) with the tools and expertise needed to diagnose autism within their practice. PCPs are often trusted professionals who have many touchpoints with children during early development, in which they can identify early signs of autism. Recent initiatives have focused on bolstering PCPs' diagnostic capabilities; however, no studies have examined how the rates of autism diagnosis in primary care have changed over time. We aimed to evaluate whether autism diagnosis in primary care has changed over time and how diagnosis in primary care relates to a child's age at the time of diagnosis. We found that the likelihood of a child being diagnosed by a PCP decreased by about 2% with every passing year from 2004 to 2019 when accounting for demographic characteristics. In our sample, PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychologists and psychiatrists). Further research is needed to understand why the proportion of children diagnosed by PCPs decreases over time. However, this decrease suggests more work is needed to get capacity-building initiatives into community primary care practice. Though we must continue to find effective ways to build community PCPs' ability to diagnose autism, the present findings support the crucial role PCPs can play in early autism diagnosis.

Lay abstract: Autistic people are more likely than non-autistic people to experience mental health difficulties. The Strengths and Difficulties Questionnaire is often used to screen for these difficulties and to otherwise make important decisions about mental health treatment and research in populations of autistic people. However, this study suggests that parent-reported Strengths and Difficulties Questionnaire scores may not be useful for comparing autistic and non-autistic adolescents at 11, 14 and 17 years old, as well as screening for mental health conditions in autistic adolescents. In addition, several items may be more likely to be endorsed by parents of autistic 17-year-olds than by parents of non-autistic 17-year-olds (and vice versa), which might suggest caution is needed when comparing groups on specific items.

Lay abstract: This study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18-49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. There is little research exploring how autistic people find information about autism on social media and how that makes them feel. Therefore, it is important to ask autistic people about their experiences with using social media to obtain content about autism. The 12 participants explained that when they searched for information about autism on the official health pages, they often felt that the information they found was insufficient and could not answer their questions. In addition, they searched on social media platforms for information about autism despite that they perceived social media as an unreliable source. On the social media platforms, many found content that was positive in relation to their autistic identities. The participants also found comfort in some of the forums and social media groups and received helpful advice. Nevertheless, some of the discussions were aggressive and the participants felt alienated, which did not provide a sense of community online. The findings from the study may advice on what is missing in the official pages about autism, and highlight the need to involve the autistic community in writing the content on such platforms.

Lay abstract: In some cases, a clinician's perceptions of a child's autism-related behaviors are not the same as the child's caregiver's perceptions. Identifying how these discrepancies relate to the characteristics of the child is critical for ensuring that diagnosis procedures are unbiased and suitable for all children. This study examined whether discrepancies between clinician and caregiver reports of autism features related to the child's sex at birth. We also explored how the discrepancies related to the age at which the child received their autism diagnosis and how much intervention they received. We found that clinicians rated autism features higher than caregivers for boys and rated autism features lower than caregivers for girls. In addition, lower clinician relative to parent ratings was related to being diagnosed at an older age and receiving less intervention. These findings suggest that there is more to learn about the presentation of autism-related behaviors in girls. When caregiver and clinician ratings of autism features do not align, it may be important to consider caregivers' ratings to obtain a more accurate picture of the child's autism features and the support they may need.

Lay abstract: It was recently suggested that a set of ideas known as gestalt language development be embraced as a neurodiversity-affirmative practice. Neurodiversity refers to the idea that people interact with the world in many different ways and that there is not a single right way to do so. Some aspects of gestalt language development, such as embracing autistic communication, are consistent with neurodiversity. However, gestalt language development is also associated with numerous ideas, assertions, and clinical strategies that lack theoretical and empirical support. For this reason, we believe it is premature to embrace gestalt language development as a neurodiversity-affirmative practice. We propose that it is important to make sure we use language that differentiates between delayed echolalia and the broader set of ideas that comprise gestalt language development. We also suggest that it is important to discuss the relationship between neurodiversity-affirmative practices and practices supported by research evidence.

Lay abstract: There has been much research about the experiences of families of autistic children as they navigate the process of accessing a diagnosis and associated support. However, most of this work has been conducted in Europe, the United States, and Australia. In this study, we examined the experiences of 767 families in Ecuador via an in-depth survey. Of the families we surveyed, 651 had children whose journeys resulted in them receiving a formal autism diagnosis. Most families realized that their children might have developmental differences when they were between the ages of 6 and 48 months, after which they tended to seek support from a professional fairly quickly (i.e. within 6 months). Most families consulted with several different professionals before they accessed a diagnosis for their children, with children tending to receive a diagnosis before the age of 48 months. Families often reported negative emotions around their children's diagnostic and post-diagnostic journeys, which were commonly related to the lack of information and services available to them. We hope that through gaining a greater understanding of the experiences of families of autistic children in Ecuador, these findings can be used to inform public policies that lead to the development of supports and services that better meet the needs of autistic people and their families in this context.

Lay abstract: Scholarship addressing neurodiversity has made enormous progress in challenging and providing alternative narratives to the dominant frameworks of medical model. Although this is a necessary and important development, scholars need to think and act beyond the immediate local context of theory generation (Global North-mainly the United Kingdom and the United States) and examine its impact on the racialized neurodivergent individuals of the Global Majority. This article will provide a decolonial framework that has been missing in the neurodiversity scholarship. The arguments presented in the article aligns well with the goals of critical autism studies and will further inform the knowledge in this area. Through a decolonial lens, this article brings the crucial issue of knowledge production outside of Global Northern countries, specifically, knowledge systems from the Global South that have parallels with neurodiversity. The article frames neurodiversity as part of an interconnected knowledge continuum rather than considering Global North alone as the only loci of knowledge production. Furthermore, it highlights the lack of focus on the intersections between racialisation and neurodivergence and the implications of this for the racialized neurodivergent individuals of the global majority. The article provides new avenues for theoretical discourses to emerge within the academy. It will have important research implications in relation to how neurodiversity will be viewed and framed outside Global Northern countries. The article highlights the importance of engaging in intersectional and interdisciplinary research and establishing a critical link with the scholars of neurodiversity, critical autism studies, and disability critical race studies.