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.

The Relationship Between Emotion Dysregulation and Error Monitoring in Adolescents with ADHD.

Attention-deficit/hyperactivity disorder (ADHD) is emblematic of the limitations of existing diagnostic categories. One potential solution, consistent with the Research Domain Criteria (RDoC) initiative, is to interrogate psychological mechanisms at the behavioral and physiological level together to try and identify meaningful subgroups within existing categories. Such approaches provide a way to revise diagnostic boundaries and clarify individual variation in mechanisms. Here, we illustrate this approach to help resolve heterogeneity in ADHD using a combination of behaviorally-rated temperament measures from the Early Adolescent Temperament Questionnaire; cognitive performance on three difference conditions of an emotional go/no-go task; and electroencephalogram (EEG)-measured variation in multiple stages of error processing, including the error-related negativity (ERN) and positivity (Pe). In a large (N = 342), well-characterized sample of adolescents with ADHD, latent profile analysis identified two ADHD temperament subgroups: 1) emotionally regulated and 2) emotionally dysregulated (with high negative affect). Cognitive and EEG assessment in a subset of 272 adolescents (nADHD = 151) found that the emotionally dysregulated group showed distinct patterns of change in early neural response to errors (ERN) across emotional task conditions as compared to emotionally-regulated ADHD adolescents and typically-developing controls. Both ADHD groups showed blunted later response to errors (Pe) that was stable across emotional task conditions. Overall, neural response patterns identified important differences in how trait and state emotion interact to affect cognitive processing. Results highlight important temperament variation within ADHD that helps clarify its relationship to the ERN, one of the most prominent putative neural biomarkers for psychopathology.

Incidence of Inflammatory Bowel Disease in New Zealand Remains High, Findings in the Manawatu Region.

BACKGROUND: New Zealand (NZ) has one of the world's highest rates of inflammatory bowel diseases (IBD), however available data are limited to southern, urban regions. AIMS: To determine the incidence and prevalence of IBD in the Manawatu region of NZ. METHODS: Patients in the Manawatu region, with a diagnosis of IBD made between 2011 and 2015 were identified. Demographic, diagnostic and disease data were collected, fulfilment of diagnostic criteria was assessed, and incidence rates were calculated. Comparison of disease phenotype and observed diagnostic criteria was made between diagnosis and 12-months following diagnosis. All resident patients with a diagnosis of IBD current on 5 March 2013 were identified, and prevalence rates were calculated. RESULTS: The mean annual age-standardised incidence rates of UC, CD, and IBD were 10.2, 17.0, and 27.2 per 100,000. IBD incidence was highest among those of European ethnicity (24.8 per 100,000), followed by Asian (1.4), and Maori (1.1). IBD incidence in the urban population was 34.0 per 100,000 (95% CI 24.1-46.0) compared to the rural population of 5.6 (95% CI 0.4-22.4). The age-standardised point prevalence of UC, CD, and IBD on 5 March 2013 was 157.7, 231.8, and 397.9 per 100,000, respectively. CONCLUSIONS: The incidence and prevalence of IBD in the Manawatu region are comparable to those reported in other Australasian studies. Incidence was lower in Maori, and in the rural population. Follow-up is required to identify any changes in incidence and phenotype, and whether rural residence remains protective.

Joint polygenic and environmental risks for childhood attention-deficit/hyperactivity disorder (ADHD) and ADHD symptom dimensions.

Background: attention-deficit/hyperactivity disorder (ADHD) is associated with both polygenic liability and environmental exposures, both intrinsic to the family, such as family conflict, and extrinsic, such as air pollution. However, much less is known about the interplay between environmental and genetic risks relevant to ADHD-a better understanding of which could inform both mechanistic models and clinical prediction algorithms. Methods: Two independent data sets, the population-based Adolescent Brain Cognitive Development Study (ABCD) (N = 11,876) and the case-control Oregon-ADHD-1000 (N = 1449), were used to examine additive (G + E) and interactive (GxE) effects of selected polygenic risk scores (PRS) and environmental factors in a cross-sectional design. Genetic risk was measured using PRS for nine mental health disorders/traits. Exposures included family income, family conflict/negative sentiment, and geocoded measures of area deprivation, lead exposure risk, and air pollution exposure (nitrogen dioxide and fine particulate matter). Results: ADHD PRS and family conflict jointly predicted concurrent ADHD symptoms in both cohorts. Additive-effects models, including both genetic and environmental factors, explained significantly more variation in symptoms than any individual factor alone (joint R 2 = .091 for total symptoms in ABCD; joint R 2 = .173 in Oregon-ADHD-1000; all delta-R 2 p-values <2e-7). Significant effect size heterogeneity across ancestry groups was observed for genetic and environmental factors (e.g., Q = 9.01, p = .011 for major depressive disorder PRS; Q = 13.34, p = .001 for area deprivation). GxE interactions observed in the full ABCD cohort suggested stronger environmental effects when genetic risk is low, though they did not replicate. Conclusions: Reproducible additive effects of PRS and family environment on ADHD symptoms were found, but GxE interaction effects were not replicated and appeared confounded by ancestry. Results highlight the potential value of combining exposures and PRS in clinical prediction algorithms. The observed differences in risks across ancestry groups warrant further study to avoid health care disparities.

OnabotulinumtoxinA for Pediatric Migraine.

BACKGROUND: Migraine is a painful, prevalent, and problematic condition among children. Children need access to safe and effective treatment options to alleviate the impact of this chronic condition on their wellbeing. CLINICAL IMPLICATIONS: Nurses have a crucial role in supporting patient access to BTX-A. Given the results of this and other studies demonstrating the safety and efficacy of BTX-A in children, nurses can support policy change for health plans to fund this intervention for pediatric migraineurs. Allowing children to receive the safe and effective BTX-A injections will lessen the already significant impact of chronic migraine on their physical, emotional and mental health. Nurses can also play a key role in providing education to patients regarding safe administration of BTX-A for migraine. AIM: The objective of this study was to define the experiences, effects, and clinical response of children to onabotulinumtoxinA (BTX-A) for migraine prevention. METHODS: Clinical documentation for patients aged 13-17 years presenting for BTX-A treatment for chronic migraine between 2016-2022 in a community-based specialty clinic within a large, urban, pediatric academic medical center were included. A series of one-way repeated measures (analysis of variance [ANOVA]) were conducted to compare headache frequency, severity, and duration at baseline, and following first and second injections of BTX-A. RESULTS: Of 32 eligible participants, administration of BTX-A demonstrated a decrease in headache frequency and severity. Participants reported nearly seven fewer headache days per month. Participants reported neck stiffness, fever or flu-like symptoms, fatigue, and worsening pain following BTX-A administration. CONCLUSIONS: Pediatric migraineurs need therapies that are safe, effective, and accessible. BTX-A was a safe and effective treatment for migraine among the children included in this study.

Development and Validation of the Assessment of Bullying Experiences Questionnaire for Neurodivergent Youth.

Bullying victimization is a prevalent concern for neurodivergent (e.g., autistic, ADHD) youth. Bullying assessment methods vary widely and there is currently no questionnaire specific to neurodivergent youth. The Assessment of Bullying Experiences (ABE) was created to fill this gap. The ABE questionnaire was completed by 335 parents of school-age youth characterized as autistic, having ADHD, or community comparison. Exploratory and Confirmatory Factor Analysis identified a four-factor solution, aligning with verbal, physical, relational, and cyber victimization. Construct validity analyses indicate the ABE converges with an existing bullying questionnaire and diverges from disruptive behavior or internalizing symptoms. The ABE questionnaire is a valid measure of bullying that furthers understanding of nuance in peer victimization for neurodivergent youth and informs group-specific intervention.

Brief Report: Predictors of School Refusal Due to Bullying in Children with Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder.

Children with Autism Spectrum Disorder (ASD) or Attention-Deficit/Hyperactivity Disorder (ADHD) are at increased risk for bullying victimization. School refusal is a 'red flag' for identification of bullying in children with ASD and/or ADHD. This study examined the impact of diagnoses, demographics, and school variables on school refusal due to bullying. Participants were 97 parents of 154 children with ASD, ADHD, ASD + ADHD, other diagnoses, or no diagnosis. Children with ASD + ADHD were most likely to refuse school due to bullying. Classroom aides and behavior problems were protective and risk factors, respectively. In the final regression model, child diagnosis no longer predicted school refusal. School refusal and problem behavior warrant consideration as a marker of distress for victimized children.

Inflammatory Bowel Disease: Are Symptoms and Diet Linked?

New Zealand (NZ) has one of the world's highest incidence rates of Inflammatory Bowel Disease (IBD), a group of chronic inflammatory conditions that affect the gastrointestinal tract. Patients with IBD often believe certain foods influence their disease symptoms and consequently may alter their diet considerably. The objective of this study was to determine foods, additives, and cooking methods (dietary elements) that NZ IBD patients identify in the onset, exacerbation, or reduction of their symptoms. A total of 233 participants completed a self-administered questionnaire concerning symptom behaviour in association with 142 dietary elements. Symptom onset and symptom exacerbation were associated with dietary elements by 55% (128) and 70% (164) of all IBD participants, respectively. Fruit and vegetables were most frequently identified, with dairy products, gluten-containing bread, and foods with a high fat content also considered deleterious. Of all IBD participants, 35% (82) associated symptom reduction with dietary elements. The identified foods were typically low in fibre, saturated fatty acids, and easily digestible. No statistically significant differences were seen between the type or number of dietary elements and disease subtype or recent disease activity. The association between diet and symptoms in patients with IBD and the mechanism(s) involved warrant further research and may lead to the development of IBD specific dietary guidelines.

Vitamin D concentrations in New Zealanders with and without inflammatory bowel disease: do they differ?

AIM: Patients with inflammatory bowel disease (IBD), Crohn's disease (CD) or ulcerative colitis (UC) are at risk of low vitamin D owing to reduced absorption, medication-associated sunlight exposure restrictions and/or increased requirements due to inflammation. This study aimed to determine if the serum vitamin D concentration of New Zealand IBD patients relates to disease activity and differs from controls. METHOD: Data concerning demographics, sunlight exposure, vitamin D supplementation and disease activity were collected using a retrospective questionnaire. Serum vitamin D concentrations were measured in dried blood spots and validated against blood samples in a participant sub-group. RESULTS: Vitamin D concentration was significantly increased by supplementation (82.8 v 66.4nmol/L, p<0.001) and sunlight exposure while on holiday (75.2 v 63.7nmol/L, p<0.001). Patients with CD who reported active disease in the last year had significantly lower vitamin D concentrations (68.6 v 84.6nmol/L, p=0.008) than those who reported remaining in remission. CONCLUSION: In this cohort of New Zealand residents, mean vitamin D of patients with IBD was not different from controls. In patients with CD, recent disease activity was significantly associated with lower vitamin D. The use of vitamin D supplementation may have implications for reducing disease activity occurrence in patients with CD.

Conceptualizing bullying in children with autism spectrum disorder: Using a mixed model to differentiate behavior types and identify predictors.

Children with autism spectrum disorder experience bullying more frequently than their typical peers. Inconsistent definitions for and imprecise measurement of bullying in the literature impede a better understanding of this difference, and multiple types of bullying topographies create additional dimensions for analysis. In this study, participants rated the severity of bullying depicted in written vignettes of child-dyadic interactions. The vignettes varied across child age (4-15 years old) and described either one of four different types of bullying or non-bullying behavior. Participants included teachers and parents of children with autism spectrum disorder and community members without an autism spectrum disorder child. Participants' severity ratings of vignettes that described bullying differed by bullying type (i.e. verbal, physical, cyber, and interpersonal). Multilevel modeling revealed that bullying severity ratings are impacted by the age of children in the vignette, being a community member without children, and other demographic variables. These findings have implications for research methodology, assessment, and conceptualization of bullying in typical children as well as those with autism spectrum disorder.

In vitro digestion for assessing micronutrient bioavailability: the importance of digestion duration.

Static digestion in vitro is a commonly used technique for investigating micronutrient availability which allows the nutrients or foods of interest to be exposed to conditions that simulate those found within the stomach and small intestine. The activity of these digestive enzymes throughout their respective simulated digestion phases has been reported to decline due to the autolytic activity of the proteases and therefore incomplete digestion may result. The degree of protease inactivation under commonly simulated digestion conditions requires further quantification. Pepsin and pancreatic protease activities were assessed throughout a simulated digestion protocol in vitro over multiple time points using stop-rate spectroscopy. The protease activity of both pepsin and pancreatin decreased significantly during their respective digestion phases. Results suggest that gastric and intestinal proteases are destroyed or inactivated during their respective digestive phase. For this reason, prolonged digestion protocols may require protease supplementation throughout digestion to correctly simulate physiological conditions.

The BUFFET Program: Development of a Cognitive Behavioral Treatment for Selective Eating in Youth with Autism Spectrum Disorder.

Selective eating (often referred to as "picky" eating) is common in individuals with autism spectrum disorder (ASD) across the lifespan. Behavioral interventions are widely used to treat selective eating; however, most of these programs are time intensive, have not been evaluated for use in outpatient settings, and do not typically include youth beyond early childhood. Despite the functional impact and risk for negative outcomes associated with selective eating, there are no empirically supported treatments available for older children, adolescents, or adults, either with or without ASD. To address this treatment gap, we developed BUFFET: the Building Up Food Flexibility and Exposure Treatment program. BUFFET is a 14-week, multi-family group cognitive behavioral treatment for selective eating in children (8-12 years) with ASD. In this paper, we will (1) discuss the theoretical conceptualization of BUFFET, (2) describe the treatment content and structure, (3) present feasibility data from the initial pilot trial, and (4) consider next steps in treatment development.