Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts.
Ontology highlight
ABSTRACT:
SUBMITTER: Gillespie-Lynch K
PROVIDER: S-EPMC5368186 | biostudies-literature | 2017
REPOSITORIES: biostudies-literature
Publications
Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts.
Gillespie-Lynch Kristen K Kapp Steven K SK Brooks Patricia J PJ Pickens Jonathan J Schwartzman Ben B
Frontiers in psychology 20170328
Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism expe ...[more]
Similar Datasets
Project description:Genetic testing for autism has been a controversial topic within the autistic community. Opinions regarding the benefits, risks, and limitations of genetic testing often differ between autistic people, researchers, and healthcare providers. The present study sought to understand the beliefs, attitudes, and intentions to pursue genetic testing of autistic adults and compare perspectives of autistic people who have had genetic testing with those who have not. An international sample of 173 autistic adults (19 [11%] who had previously undergone autism-related genetic testing) completed an online survey with questions assessing beliefs, attitudes, and intentions to pursue genetic testing. Beliefs and attitudes about genetic testing varied widely across the sample. Autistic individuals who had received prior genetic testing had much more positive beliefs about autism-related genetic testing (d = 0.87, 95% CI [0.37, 1.36]) and attitudes toward genetic testing (d = 1.14, 95% CI [0.66, 1.61]) compared to those who had not received such testing, although there were no meaningful differences between those same groups regarding beliefs about genetic testing unrelated to autism (d = 0.02, 95% CI [-0.45, 0.49], p = 0.93). Intention to genetically test oneself or one's (hypothetical) children was also significantly predicted by autism-specific beliefs, attitudes, and prior genetic testing status. A large majority of the sample (78.6%) also agreed that autistic individuals would benefit from contact with a genetic counselor in certain situations. These findings suggest that the autistic community does not have a singular view of genetic testing, and for those Autistic individuals who are interested in pursuing genetic testing for themselves or a family member, genetic counselors have the potential to play a key role in clinical care.
| S-EPMC11586462 | biostudies-literature
Project description:Lay abstractAlthough research has the potential to improve autistic people's lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people's lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people's knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people's research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.
| S-EPMC11401337 | biostudies-literature
Project description:BackgroundIn recent years, there have been increasing discussions surrounding the appropriate terminology to talk about autism. Initially, this debate revolved around the use of person-first language (e.g., person with autism) versus identity-first language (IFL; e.g., autistic person) but has recently expanded to other autism-related terms (e.g., deficits). However, to date, studies investigating autism-related language preferences have been limited to English-speaking countries, and little is known about preferences in other languages. This study addresses this gap by investigating the language preferences of French-speaking autistic adults.MethodsFive hundred and forty-one French-speaking autistic adults (formal diagnosis and self-identified) completed an online survey where they selected terms they preferred to use to talk about: (1) the nomenclature of autism; (2) an autistic person; (3) someone's autistic identity; (4) autism more broadly; (5) the abilities of autistic people; and (6) people without a diagnosis of autism. Participants also revealed more about their language preferences via an open-text response.ResultsThe most preferred terms were "Autisme," "Personne autiste," "Autiste," "Est Autiste," "Différence neurologique/cérébrale," "Différences," "Difficultés," "Personne neurotypique," "Neurotypique," and "Personne non-autiste." To better understand these preferences, participants' open comments were analyzed, revealing further support for IFL and the social model of disability, and a preference for simple, precise, and validated terms.ConclusionsThese results are consistent with autism terminology preferences in English-speaking countries and provide additional insight into the reasons underlying these preferences. Such work has implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public.
| S-EPMC10499185 | biostudies-literature
Project description:ObjectivesThe cognitive expertise of experts has been an intriguing theme; there has been rapid growth in cognitive research related to esports. Given the close association between esports activities and cognition, esports holds promise in offering new perspectives for understanding cognitive expertise. This meta-analysis aims at quantitatively delineating the cognitive disparities between esports experts and amateurs.MethodsThe expert group comprised professional video game players and high-ranking players (top 1%), while amateurs were assigned to the control group. Research studies published between January 2000 and December 2023 were systematically searched in databases. A three-level model with cluster-robust variance estimation was used to calculate the overall effect size. The moderating variables included professional level, cognitive abilities, dependent variable type, game genre, gender and age.ResultsA total of 15 studies containing 142 effect sizes and 1085 participants were included in this meta-analysis. The results indicated that, compared to amateurs, video game experts demonstrated superior cognitive abilities with a small effect size (Hedges' g = 0.373, 95% CI [0.055-0.691], p = .012). The differences between experts and amateur players mainly manifest in spatial cognition and attention. Sensitivity analysis, risk of bias, and publication bias results indicated the reliability of these findings.ConclusionsThis meta-analysis confirms that esports experts possess superior cognitive abilities compared to amateurs, particularly in aspects of spatial cognition and attention. These can provide an effective reference for future selection and training in esports.
| S-EPMC11316462 | biostudies-literature
Project description:BackgroundAutistic people and those with high autistic traits are at high risk of experiencing suicidality. Yet, there are no suicidality assessment tools developed or validated for these groups.MethodsA widely used and validated suicidality assessment tool developed for the general population (SBQ-R), was adapted using feedback from autistic adults, to create the Suicidal Behaviours Questionnaire-Autism Spectrum Conditions (SBQ-ASC). The adapted tool was refined through nine interviews, and an online survey with 251 autistic adults, to establish clarity and relevance of the items. Subsequently, 308 autistic, 113 possibly autistic, and 268 non-autistic adults completed the adapted tool online, alongside self-report measures of autistic traits (AQ), camouflaging autistic traits (CAT-Q), depression (PHQ-9), anxiety (ASA-A), thwarted belongingness and perceived burdensomeness (INQ-15), lifetime non-suicidal self-injury, and the original version of the suicidality assessment tool (SBQ-R). Analyses explored the appropriateness and measurement properties of the adapted tool between the groups.ResultsThere was evidence in support of content validity, structural validity, internal consistency, convergent and divergent validity, test-retest validity, sensitivity and specificity (for distinguishing those with or without lifetime experience of suicide attempt), and hypothesis testing of the adapted tool (SBQ-ASC) in each group. The structure of the SBQ-ASC was equivalent between autistic and possibly autistic adults, regardless of gender, or use of visual aids to help quantify abstract rating scales.LimitationsThe samples involved in the development and validation of the adapted tool were largely female, and largely diagnosed as autistic in adulthood, which limits the generalisability of results to the wider autistic population. The SBQ-ASC has been developed for use in research and is not recommended to assess risk of future suicide attempts and/or self-harm. The SBQ-ASC has been designed with and for autistic and possibly autistic adults, and is not appropriate to compare to non-autistic adults given measurement differences between these groups.ConclusionsThe SBQ-ASC is a brief self-report suicidality assessment tool, developed and validated with and for autistic adults, without co-occurring intellectual disability. The SBQ-ASC is appropriate for use in research to identify suicidal thoughts and behaviours in autistic and possibly autistic people, and model associations with risk and protective factors.
| S-EPMC8218414 | biostudies-literature
Project description:BackgroundA considerable amount of research has discussed whether autism and psychiatric/neurodevelopmental conditions in general are best described categorically or dimensionally. In recent years, finite mixture models have been increasingly applied to mixed populations of autistic and non-autistic individuals to answer this question. However, the use of such methods with mixed populations may not be appropriate for two reasons: First, subgroups within mixed populations are often skewed and thus violate mixture models assumptions, which are based on weighted sum of Gaussian distributions. Second, these analyses have, to our knowledge, been solely applied to enriched samples, where the prevalence of the clinical condition within the study sample far exceeds epidemiological estimates.MethodWe employed a dual Weibull mixture model to examine the distribution of the Autism Spectrum Quotient scores of a mixed sample of autistic and non-autistic adults (N = 4717; autism = 811), as well as of a derived sample (from the enriched sample; N = 3973; autism = 67) that reflects the current prevalence of autism within the general population.ResultsIn a mixed autistic and non-autistic population, our model provided a better description of the underlying structure of autistic traits than traditional finite Gaussian mixture models and performed well when applied to a sample that reflected the prevalence of autism in the general population. The model yielded results, which are consistent with predictions of current theories advocating for the co-existence of a mixed categorical and dimensional architecture within the autism spectrum.ConclusionThe results provide insight into the continuum nature of the distribution of autistic traits, support the complementary role of both categorical and dimensional approaches to autism spectrum condition, and underscore the importance of analyzing samples that reflect the epidemiological prevalence of the condition. Owing to its flexibility to represent a wide variety of distributions, the Weibull distribution might be better suited for latent structure studies, within enriched and prevalence-true samples.
| S-EPMC6537408 | biostudies-literature
Project description:Impairment in predictive processes gained a lot of attention in recent years as an explanation for autistic symptoms. However, empirical evidence does not always underpin this framework. Thus, it is unclear what aspects of predictive processing are affected in autism spectrum disorder. In this study, we tested autistic adults on a task in which participants acquire probability-based regularities (that is, a statistical learning task). Twenty neurotypical and 22 autistic adults learned a probabilistic, temporally distributed regularity for about 40 min. Using frequentist and Bayesian methods, we found that autistic adults performed comparably to neurotypical adults, and the dynamics of learning did not differ between groups either. Thus, our study provides evidence for intact statistical learning in autistic adults. Furthermore, we discuss potential ways this result can extend the scope of the predictive processing framework, noting that atypical processing might not always mean a deficit in performance.
| S-EPMC10363128 | biostudies-literature
Project description:BackgroundA growing body of research has sought to understand autistic people's research priorities. Several of these studies have identified employment as a key research priority. Yet, there have been a few attempts to identify specific, actionable priorities within this area.MethodsUsing an online survey, we asked 197 autistic people in the United Kingdom about their priorities for future autism-employment research.ResultsParticipants spoke of their challenges in gaining and sustaining meaningful employment and called for researchers to conduct research that results in direct improvements to employment experiences. Regarding their research priorities, participants indicated a need for research covering all aspects of the employment lifecycle from accessing employment to transitioning out of employment. Importantly, participants also discussed how such research should be conducted: with autistic people as co-researchers and ensuring a diverse range of autistic people are listened to.ConclusionWhile much existing autism-employment research appears to align with the priorities outlined in this study, seemingly minimal attention has been paid to later stages of the work lifecycle (e.g., progressing into more senior job roles or transitioning out of work). By identifying disparities between autistic people's priorities and the research being conducted, we can support autistic people to drive the research agenda and ensure autism-employment research positively impacts the community it aims to serve.
| S-EPMC10902279 | biostudies-literature
Project description:One of the most challenging issues among experts is how to improve motor skills that have already been highly trained. Recent studies have proposed importance of both genetic predisposition and accumulated amount of practice for standing at the top of fields of sports and performing arts. In contrast to the two factors, what is unexplored is how one practices impacts on experts' expertise. Here, we show that training of active somatosensory function (active haptic training) enhances precise force control in the keystrokes and somatosensory functions specifically of expert pianists, but not of untrained individuals. By contrast, training that merely repeats the task with provision of error feedback, which is a typical training method, failed to improve the force control in the experts, but not in the untrained. These findings provide evidence that the limit of highly trained motor skills could be overcome by optimizing training methods.
| S-EPMC7679166 | biostudies-literature
Project description:Autism is currently considered a multigene disorder with epigenetic influences. To investigate the contribution of DNA methylation to autism spectrum disorders, we have recently completed large-scale methylation profiling by CpG island microarray analysis of lymphoblastoid cell lines derived from monozygotic twins discordant for diagnosis of autism and their nonautistic siblings. Methylation profiling revealed many candidate genes differentially methylated between discordant MZ twins as well as between both twins and nonautistic siblings. Bioinformatics analysis of the differentially methylated genes demonstrated enrichment for high-level functions including gene transcription, nervous system development, cell death/survival, and other biological processes implicated in autism. The methylation status of 2 of these candidate genes, BCL-2 and retinoic acid-related orphan receptor alpha (RORA), was further confirmed by bisulfite sequencing and methylation-specific PCR, respectively. Immunohistochemical analyses of tissue arrays containing slices of the cerebellum and frontal cortex of autistic and age- and sex-matched control subjects revealed decreased expression of RORA and BCL-2 proteins in the autistic brain. Our data thus confirm the role of epigenetic regulation of gene expression via differential DNA methylation in idiopathic autism, and furthermore link molecular changes in a peripheral cell model with brain pathobiology in autism.
| S-EPMC2909294 | biostudies-literature