Alison S. Russell, Tyler C. McFayden, Margaret McAllister, Kimberly Liles, Sophie Bittner, John F. Strang, Clare Harrop
An autism diagnosis can be a critical milestone toward effective and affirming support. Despite the sharp increase in the number of studies focused on late diagnosis over the last 15 years, there remains no consensus as to what constitutes a late diagnosis of autism, with cutoffs ranging from infancy to middle adulthood. This preregistered systematic review evaluated (a) the field's current quantification of late diagnosis in autism, (b) how the threshold for late diagnosis varies as a function of demographic and population factors, and (c) trends over time. Of the 11,697 records retrieved, N = 420 articles met inclusion criteria and were extracted. Articles spanned 35 years (1989–2024) and included participants from every continent except Antarctica. Only 34.7% of included studies provided a clear threshold for “late diagnosis” (n = 146/420). Late diagnosis cutoffs averaged 11.53 years (range = 2–55 years; median = 6.5 years) with a bimodal distribution (3 and 18 years). The threshold for late diagnosis varied by participant location, F(5,140) = 10.4, p < 0.0001, and sample age, F(5,140) = 20.1, p < 0.0001. Several key rationales for age determinations emerged, including access to services, considerations for adult diagnoses, and data driven approaches. What authors consider to be a “late” diagnosis of autism varies greatly according to research context. Justifications for a specific late-diagnosis age cutoff varied, underscoring the need for authors to contextualize their conceptualizations.
{"title":"Who, when, where, and why: A systematic review of “late diagnosis” in autism","authors":"Alison S. Russell, Tyler C. McFayden, Margaret McAllister, Kimberly Liles, Sophie Bittner, John F. Strang, Clare Harrop","doi":"10.1002/aur.3278","DOIUrl":"10.1002/aur.3278","url":null,"abstract":"<p>An autism diagnosis can be a critical milestone toward effective and affirming support. Despite the sharp increase in the number of studies focused on late diagnosis over the last 15 years, there remains no consensus as to what constitutes a late diagnosis of autism, with cutoffs ranging from infancy to middle adulthood. This preregistered systematic review evaluated (a) the field's current quantification of late diagnosis in autism, (b) how the threshold for late diagnosis varies as a function of demographic and population factors, and (c) trends over time. Of the 11,697 records retrieved, <i>N</i> = 420 articles met inclusion criteria and were extracted. Articles spanned 35 years (1989–2024) and included participants from every continent except Antarctica. Only 34.7% of included studies provided a clear threshold for “late diagnosis” (<i>n</i> = 146/420). Late diagnosis cutoffs averaged 11.53 years (range = 2–55 years; median = 6.5 years) with a bimodal distribution (3 and 18 years). The threshold for late diagnosis varied by participant location, <i>F</i>(5,140) = 10.4, <i>p</i> < 0.0001, and sample age, <i>F</i>(5,140) = 20.1, <i>p</i> < 0.0001. Several key rationales for age determinations emerged, including access to services, considerations for adult diagnoses, and data driven approaches. What authors consider to be a “late” diagnosis of autism varies greatly according to research context. Justifications for a specific late-diagnosis age cutoff varied, underscoring the need for authors to contextualize their conceptualizations.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":"18 1","pages":"22-36"},"PeriodicalIF":5.3,"publicationDate":"2024-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142696065","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emily F. Ferguson, Emily Spackman, Ru Ying Cai, Antonio Y. Hardan, Mirko Uljarević
Self-injurious behaviors (SIB) encompass a heterogeneous set of self-inflicted aggressive behaviors that are highly prevalent in autistic youth. Existing research on SIB in autism spectrum disorder (ASD) has been limited by significant methodological and conceptual inconsistencies. Thus, the current study leveraged item-level data capturing the severity of unique SIB topographies to further understanding of factors associated with distinct SIB in a sample of 582 autistic youth (Mage = 12.12, SDage = 3.68; range: 3–19 years; 13% females). Results suggest variation in severity endorsements for specific SIB topographies amongst autistic youth, such that 30%–50% of caregivers endorsed slight to very serious concern regarding the SIB topographies of bites nails/skin/fingers, scratches self, hits head/face/neck, bangs head against things, and picks skin. Generalized additive models demonstrated distinct patterns of associations between each SIB topography and dysregulation, sensory hypersensitivity, age, sex, IQ, and language level. Findings underscore the importance of exploring SIB as a multifaceted construct to capture unique correlates of distinct SIB that vary in severity and functional impact, which is critical for the development of effective interventions. This study represents an important step towards more individualized characterization of SIB and support for diverse presentations of these behaviors in autistic youth.
{"title":"Exploring the Heterogeneity of Self-Injurious Behaviors in Autistic Youth: Patterns, Predictors, and Implications for Intervention","authors":"Emily F. Ferguson, Emily Spackman, Ru Ying Cai, Antonio Y. Hardan, Mirko Uljarević","doi":"10.1002/aur.3269","DOIUrl":"10.1002/aur.3269","url":null,"abstract":"<p>Self-injurious behaviors (SIB) encompass a heterogeneous set of self-inflicted aggressive behaviors that are highly prevalent in autistic youth. Existing research on SIB in autism spectrum disorder (ASD) has been limited by significant methodological and conceptual inconsistencies. Thus, the current study leveraged item-level data capturing the severity of unique SIB topographies to further understanding of factors associated with distinct SIB in a sample of 582 autistic youth (<i>M</i><sub>age</sub> = 12.12, <i>SD</i><sub>age</sub> = 3.68; range: 3–19 years; 13% females). Results suggest variation in severity endorsements for specific SIB topographies amongst autistic youth, such that 30%–50% of caregivers endorsed slight to very serious concern regarding the SIB topographies of bites nails/skin/fingers, scratches self, hits head/face/neck, bangs head against things, and picks skin. Generalized additive models demonstrated distinct patterns of associations between each SIB topography and dysregulation, sensory hypersensitivity, age, sex, IQ, and language level. Findings underscore the importance of exploring SIB as a multifaceted construct to capture unique correlates of distinct SIB that vary in severity and functional impact, which is critical for the development of effective interventions. This study represents an important step towards more individualized characterization of SIB and support for diverse presentations of these behaviors in autistic youth.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":"18 1","pages":"133-151"},"PeriodicalIF":5.3,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142693958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Qiandong Wang, Ying Han, Yixiao Hu, Xue Li, Jing Liu, Hui Fang, Tianbi Li, Yanmei Chang, Li Yi
This study employed eye-tracking technology to investigate the mechanisms underlying reduced gaze towards the eyes in infants at high likelihood (HL) for autism, specifically examining whether it results from avoidance triggered by heightened arousal when looking at the eyes or due to indifference to the eyes (i.e., unwilling to orient to the eyes). Infants at HL for autism and typically developing (TD) infants aged within 24 months were tested. In the experiment, participants' gaze was initially guided to the eye or mouth region immediately before the onset of the face. Latency to orient away from the guided regions, latency to orient to the eyes, and the location of the secondary fixation following the onset of the face were measured. The results showed that: (1) The HL infants looked less at eyes than TD infants; (2) Compared with TD infants, HL infants oriented towards eyes more slowly after being guided to the mouth; (3) After being guided to the eyes, HL infants' secondary fixation fell less in the eye region, and their latency to orient away from the eyes was also tended to be shorter. These results suggest that reduced eye-looking time was presented in HL infants, which was further explained by both eye avoidance and indifference to the eyes. Our study contributes theoretically to understanding the atypical face scanning pattern in autistic people and its related underlying mechanisms. Furthermore, our study provides important insights into the development of early screening tools and intervention protocols for autistic people.
{"title":"Orienting to and away from the eyes in infants at high likelihood for autism when scanning faces","authors":"Qiandong Wang, Ying Han, Yixiao Hu, Xue Li, Jing Liu, Hui Fang, Tianbi Li, Yanmei Chang, Li Yi","doi":"10.1002/aur.3270","DOIUrl":"10.1002/aur.3270","url":null,"abstract":"<p>This study employed eye-tracking technology to investigate the mechanisms underlying reduced gaze towards the eyes in infants at high likelihood (HL) for autism, specifically examining whether it results from avoidance triggered by heightened arousal when looking at the eyes or due to indifference to the eyes (i.e., unwilling to orient to the eyes). Infants at HL for autism and typically developing (TD) infants aged within 24 months were tested. In the experiment, participants' gaze was initially guided to the eye or mouth region immediately before the onset of the face. Latency to orient away from the guided regions, latency to orient to the eyes, and the location of the secondary fixation following the onset of the face were measured. The results showed that: (1) The HL infants looked less at eyes than TD infants; (2) Compared with TD infants, HL infants oriented towards eyes more slowly after being guided to the mouth; (3) After being guided to the eyes, HL infants' secondary fixation fell less in the eye region, and their latency to orient away from the eyes was also tended to be shorter. These results suggest that reduced eye-looking time was presented in HL infants, which was further explained by both eye avoidance and indifference to the eyes. Our study contributes theoretically to understanding the atypical face scanning pattern in autistic people and its related underlying mechanisms. Furthermore, our study provides important insights into the development of early screening tools and intervention protocols for autistic people.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":"18 1","pages":"166-178"},"PeriodicalIF":5.3,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142689853","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Paradoxical relationship between cognitive abilities and camouflaging: Insights from ADHD and autism and its implications for neurodiversity research","authors":"Tina Taherkhani, Amir Hossein Memari","doi":"10.1002/aur.3268","DOIUrl":"10.1002/aur.3268","url":null,"abstract":"","PeriodicalId":131,"journal":{"name":"Autism Research","volume":"18 1","pages":"17"},"PeriodicalIF":5.3,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142689854","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brooke Ingersoll, Mya Howard, Devon Oosting, Alice S. Carter, Wendy L. Stone, Natalie Berger, Allison L. Wainer, Emily R. Britsch, RISE Research Network