Moving from Disorder to Difference: A Systematic Review of Recent Language Use in Autism Research.

Background: The neurodiversity paradigm positions autism as a neurological difference that is disabling in the societal context, shifting away from the traditional medical view of a disorder. Several recent publications recommend use of alternative neuro-affirming language (ANL) instead of traditional medical language (TML) with the aim to increase acceptance of autistic people and reduce prejudice. Examining language use within recent autism literature, including by journal and study characteristics, may offer insight into the influence of these recommendations and current disability discourse. Methods: A systematic review was conducted using Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines in autism research from 2021 (n = 2322 articles; 394 journals). Articles were coded according to topic, participants, and use of self-report. Journals were coded by topic, geographic region, and language guidelines. Terminology use was extracted using QDA Miner software. Results: Many articles primarily used TML with a smaller subset primarily using ANL. There was a positive correlation between ANL use and publication date. More ANL was associated with articles on topics of autistic traits, diversity, equity, and inclusion (DEI), or lifespan and that included autistic adults or autistic self-report. More ANL was also found in journals from Australasia or Europe or those that had identify-first language (IFL) guidelines. Less ANL (more TML) was associated with articles on biology/causes or treatment and that included autistic or non-autistic parents, autistic youth, siblings, or other clinical groups, and were published in medical journals. Conclusion: TML continues to largely dominate language choices in autism research, with an emerging shift toward ANL in recent literature. Increased ANL may be facilitated by journal and article language recommendations. Neuro-affirming language was also more likely in articles on topics prioritized by the autistic community, that included autistic adults, and may also be driven by cultural differences. Researchers and practitioners should consider the potential for their language use to impact individual and societal views of autistic people.

Why is this topic important? Language use impacts how groups of people are viewed. Historically, autism was talked about as part of the medical model, which usually focuses on autism symptoms and deficits. The recent neurodiversity paradigm views autism as a difference that could be accepted and supported. Part of this acceptance is using words that describe autism as part of someone's identity and emphasizing individualized strengths or needs. What is the purpose of this article? Several recent papers recommend using alternative neuro-affirming language (ANL) instead of traditional medical language (TML) in autism research. This article summarizes autism language use and examines how certain parts of journals and articles may impact phrasing. What did the authors do? We used guidelines for the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) to gather autism research studies published in 2021. We found 2322 articles from 594 journals. We first summarized how much ANL was in the articles relative to TML. Then, we compared this language use based on the articles' topic and types of participants, and also the journals' field, geographic region, and whether they included guidelines for language use. What were the results of the review? We found that articles primarily used TML, but more recent articles had more ANL. Articles that had more ANL were studies published more recently, were about traits or lifespan experiences (e.g., parenting, work, aging), included autistic adults as participants, from journals with language guidelines specific to disabled or autistic people, or from journals from Australasia or Europe. Articles that had more TML were those about treatments for or biological explanations of autism, included siblings as participants, or were published in medical journals. This means that certain aspects of articles and journals are related to how researchers write about autism. What do the authors recommend? Clinicians and researchers should ask autistic people their preferences surrounding language. Common language when referring to autism may differ based on the topic and participants that are being studied. More research is needed to understand how different terms impact prejudice toward and societal views of autistic people. We should also consider cultural differences in autism views, which influence researchers' terminology use. Journals that wish to accelerate use of ANL should consider adopting explicit guidelines for language use. How will these findings help autistic people now or in the future? This article summarizes how researchers talk about autism, which likely impacts how autistic people are viewed by others. Increasing use of ANL may gradually impact conceptualizations of autism and prejudice regarding autistic people.

Associations between Computationally Derived Parent Emotional Sentiment Scores and Child ADHD and ODD Over Time.

Family emotional climate is often assessed as expressed emotion (EE) using the five-minute speech sample (FMSS). Parent EE is related to child externalizing behavior, but the relationship with ADHD apart from externalizing is unclear. We report the largest ADHD-non-ADHD study of EE to date, introduce computational scoring of the FMSS to assay parent negative sentiment, and use this to evaluate reciprocal parent-child effects over time in ADHD while considering comorbid ODD. Parents of 810 children (nADHD = 509), aged 7-13 years old, completed the FMSS at three points. The FMSS was expert-coded for EE-Criticism at Time 1 and Time 2, negative sentiment was scored at all three time points. Sentiment and EE-Criticism were moderately correlated (r =.39, p <.001, 95% CI [0.32, 0.46]), and each was similarly correlated with baseline ADHD symptoms (r's range 0.31-0.33, p <.001) and ODD symptoms (r(ODD-EE) = 0.35, p <.001; r(ODD-sentiment = 0.28, p <.001). A longitudinal, cross-lagged panel model revealed that increases over time in parental negative sentiment scores led to increased ODD symptoms. Parent sex (namely fathers, but not mothers) showed an interaction effect of sentiment with ADHD. ADHD and ODD are independently and jointly associated with parental EE-Criticism and negative sentiment assessed by the FMSS cross-sectionally. A recursive effects model is supported for ODD, but for ADHD effects depend on which parent is assessed. For fathers, ADHD was related to negative sentiment in complex manners but for mothers, negative sentiment was related primarily to ODD.

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.