Journal of Autism and Developmental Disorders
○ Springer Science and Business Media LLC
All preprints, ranked by how well they match Journal of Autism and Developmental Disorders's content profile, based on 14 papers previously published here. The average preprint has a 0.01% match score for this journal, so anything above that is already an above-average fit. Older preprints may already have been published elsewhere.
Sosenko, F.; Nijhof, D.; McKernan Ward, L.; Cairns, D.; Hughes, L.; Rydzewska, E.
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Autistic people experience challenges in healthcare, including disparities in health outcomes and multimorbidity patterns distinct from the general population. This study investigated the efficacy of existing multimorbidity indices in predicting COVID-19 mortality among autistic adults and proposes a bespoke index, the ASD-MI, tailored to their specific health profile. Using data from the CVD-COVID-UK/COVID-IMPACT Consortium, encompassing Englands entire population, we identified 1,027 autistic adults hospitalized for COVID-19, among whom 62 died due to the virus. Employing logistic regression with 5-fold cross-validation, we selected diabetes, coronary heart disease, and thyroid disorders as predictors for the ASD-MI, outperforming the Quan Index, a general population-based measure, with an AUC of 0.872 versus 0.828, respectively. Notably, the ASD-MI exhibited better model fit (pseudo-R2 0.25) compared to the Quan Index (pseudo-R2 0.20). These findings underscore the need for tailored indices in predicting mortality risks among autistic individuals. However, caution is warranted in interpreting results, given the limited understanding of morbidity burden in this population. Further research is needed to refine autism-specific indices and elucidate the complex interplay between long-term conditions and mortality risk, informing targeted interventions to address health disparities in autistic adults. This study highlights the importance of developing healthcare tools tailored to the unique needs of neurodivergent populations to improve health outcomes and reduce disparities.
Aragon-Daud, A.; Vetere, G.; Arganaraz, M.; Musich, F.
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PurposeAutism Spectrum Disorder (ASD) prevalence rates vary greatly across regions and studies. Some countries, such as Argentina, have unknown rates. Due to this high heterogeneity in ASD prevalence worldwide, it is important to study its prevalence and characteristics in such countries to develop effective policies. Methodswe analyzed official data from the Unique Disability IDs (UDIDs) issued for individuals with ASD in the Autonomous City of Buenos Aires from 2016 to 2021, examining age, gender, and diagnosis. Resultsmost UDIDs were issued for males, for Pervasive Developmental Disorders, and almost half to individuals over 8 years old, with these trends remaining stable over these years. However, UDID issuance abruptly dropped in 2020. Conclusionsour findings highlight epidemiological aspects of the autism population in Argentina, including challenges such as delayed diagnosis and high prevalence of broad diagnosis categories. Addressing these challenges requires further research and intervention to improve the quality of life of individuals with ASD.
Morotti, H.; Mastel, S.; Keller, K.; Barnard, R. A.; Hall, T.; O'Roak, B. J.; Fombonne, E.
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Aimto evaluate if autism symptoms and diagnoses are raised in children with neurofibromatosis type 1 (NF1), to which levels, and to determine if co-occurring symptomatology accounts for this elevation. MethodWe interrogated our hospital electronic medical records. We collected parental reports of autism symptomatology, adaptive behavior, and co-occurring behavioral and emotional problems on a subsample of 45 children (9 years 2 months, 49% male). Age- and sex-matched controls with (N=180) or without ASD (N=180) were drawn from the Simons Simplex Collection and compared cross-sectionally to participants with NF1. ResultsDiagnoses of ADHD (8.8%), not of ASD (2.1%), were raised among 968 children with NF1 identified through electronic search. Mean Social Responsiveness Score (55.9) was below the cut-off of 60 for significant autism symptoms. Participants with NF1 had significantly more autism and behavioral symptoms than typically developing (TD) controls, and significantly less than controls with autism, with one exception: ADHD symptom levels were similar to those of autistic controls. When emotional, ADHD, and communication scores were covaried, the difference between participants with NF1 and TD controls disappeared almost entirely. InterpretationOur results do not support an association between NF1 and autism, both at the symptom and disorder levels. What this paper addsO_LIDiagnoses of ADHD, not of ASD, were raised among children with NF1. C_LIO_LIIncreases in autism symptoms did not reach clinically significant thresholds. C_LIO_LICo-occurring ADHD symptoms accounted for increased autism questionnaire scores. C_LIO_LIAdaptive behavior in NF1 participants showed normal socialization but lower communication proficiency. C_LI
Mehta, A. K.
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PurposeAutism (ASD) and attention-deficit/hyperactivity disorder (ADHD) are chronic developmental disorders that have drastically increased in prevalence and co-occurrence over the past two decades. In previous research, ADHD has been correlated with low income and autism with high income, but it is uncertain how gender affects this. This analysis tests each of these income correlations, socioeconomic status (SES) confounders, and income modality against both diagnoses in girls. MethodsCross-sectional data from the 2020 National Survey of Childrens Health was analyzed. Multiple logistic regressions tested for correlations between each diagnosis and income, bimodal diagnosis patterns were tested at low and high income, and posttest analyses compared the respective odds ratios against both diagnoses. ResultsThis analysis was unable to detect any of the previously researched relationships between diagnosis in girls and income, nor a significant bimodal correlation of either diagnosis with income. Low income was linearly associated with autism diagnosis (odds ratio: 0.997, p = 0.011) while ADHD was not correlated with income. A peak in both diagnoses was observed near 138% of the federal poverty limit (FPL). Compared with White girls, only Hispanic Asian girls showed higher odds of autism in this analysis (OR: 8.2, p = 0.023). ConclusionPreviously observed trends between SES and ASD or ADHD did not appear specifically in girls. Instead, girls experience income, SES, and ethnoracial trends unique to them. A peak in diagnoses near 138% FPL suggests that expanded Medicaid eligibility may play a larger role for autism diagnosis in girls than expected.
Gyamenah, P.; Burrows, K.; Rai, D.; Joinson, C.
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BackgroundThere is evidence that children with autism/autistic traits have higher risks of incontinence and constipation, but no studies have examined this in a large community-based cohort. Aim/Research questionare autistic traits and diagnosed autism prospectively associated with increased odds of incontinence and constipation in children and adolescents? MethodsThis was a population-based cohort study based on data from the Avon Longitudinal Study of Parents and Children (n=4233-4490 at age 9 years; n=3403-3697 at age 14). We used multivariable logistic regression to examine associations of parent-reported autistic traits (sociability, repetitive behaviours, social-communication, coherence) (at ages 3-9 years) and autism with incontinence (bedwetting, daytime-wetting, soiling) and constipation (parent-reported at age 9, self-reported at age 14). We adjusted for parity, maternal age at delivery, childs sex and developmental level, maternal depression, and anxiety (antenatal and postnatal), and indicators of family socioeconomic status. ResultsSocial-communication and speech coherence difficulties showed the strongest associations with incontinence, e.g. adjusted odds ratio (OR) and 95% confidence interval (CI) for the association between social-communication difficulties and daytime-wetting was 2.21 (1.47-3.32) and for coherence was 2.34 (1.60-3.43). The odds of soiling were also higher in children with social-communication (OR:1.88, 95%CI:1.28-2.75) and coherence difficulties (OR:2.04, 95%CI:1.43-2.93). Diagnosed autism was only associated with an increase in the odds of daytime-wetting (OR:3.18, 95%CI:1.44-7.02). At 14 years, there was less evidence of associations between autistic traits and incontinence but there was evidence of associations between autistic traits and constipation: social-communication (OR:1.68, 95%CI:1.13-2.49), coherence difficulties (OR:1.64, 95%CI:1.11-2.41). 5 ConclusionsEarly assessment and treatment of incontinence/constipation should be considered for children with autistic traits.
Mullally, S. L.; Edwards, C. C.; Wood, A. E.; Connolly, S. E.; Constable, H.; Watson, S.; Rodgers, J.
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BackgroundDespite receiving autism diagnoses in early life, autistic children are not routinely supported to understand these diagnoses post-diagnostically (1). Consequently, they typically grow-up lacking an accurate understanding of what it means to be autistic on both a collective and individual level (2). Without this foundational knowledge, childrens understanding of autism is garnered from how others perceive their autism, resulting in an understanding of autism, and of themselves, that is inherently negative (3). This lack of appreciation of their own individual needs, also denies them the important self-understanding afforded by the diagnosis in the first instance, alongside the opportunity to effectively self-advocate for themselves when these needs go unmet. AimsHere we sought to directly assess the benefit of a pre-recorded, online autistic-led psychoeducation course about autism and the lived experience of being autistic (i.e., NeuroBears https://www.pandasonline.org), for childrens understanding of autism and their autistic experiences, their feeling about being autistic, their communication with others about their autistic experiences, and their confidence to self-advocate for their needs. MethodsUsing a concurrent embedded mixed-methods, repeated-measures design, autistic children (aged 8-14 years), completed a bespoke questionnaire exploring the above topics, both before and after completing NeuroBears at home with a nominated safe adult. A total of 63 children (mean age=10.57 years) completed sufficient content to be included in the analysis. ResultsSignificant benefit was observed across a range of areas, including a significant improvement in the childrens knowledge and understanding of being autistic and of their unique strengths and challenges, a significant rebalancing of how the children viewed being autistic, evidence of emerging positive autistic identities and a growing sense of belongingness, a significant change in the childrens abilities to communicate about being autistic, and evidence of strengthening self-advocacy skills. ConclusionLearning about autism in a neutral and non-stigmatizing manner, and presented through the lens of autistic lived experience, conferred numerous benefits on autistic childrens self-understanding, emergent autistic identity, sense of belonging, and on their communication/self-advocacy skills. Future work is needed to establish the downstream benefits on wellbeing and quality of life.
Mullally, S. L.; Wood, A. E.; Edwards, C. C.; Connolly, S. E.; Constable, H.; Watson, S.; Rodgers, J.; Rose, K.; King, N.
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There is a critical lack of exploration into the first-hand experiences of autistic children in the psychological literature. We sought to address this using baseline data from a wider mixed-methods study. 136 autistic children (mean age=10.35) completed an online questionnaire. Questions explored childrens understanding of autism, their feelings about being autistic in different contexts, and challenges experienced. Quantitative data revealed limited autism knowledge and understanding in some. Challenges included talking about being autistic and self-advocating for needs, especially with non-family members. Children generally recognised both strengths and challenges of being autistic, although concerns about feeling/being different were widespread, and masking common. Strikingly, although most children felt positive about being autistic at home, significantly fewer felt this to be true when around peers or teachers. Using reflexive thematic analysis, four main themes were developed: (1) Overwhelming Experiences, (2) Unsafe People, (3) Sanctuary, (4) Autistic Identity. Overall, the children felt safest at home with family and/or with autistic/neurodivergent/understanding friends, but most unsafe at school with their teachers and neurotypical peers, where victimization was rife. These findings offer valuable insights into the lives of autistic children, and demand we explore how places of education can be transformed into safe spaces for autistic children.
Takach, K. E.; Dunham-Carr, K.; Parra, G.; Joffe-Nelson, L.; Jones, L.; Mankaryous, R.; Rogers, S.; Serianni, C.; Shao, M.; Zhang, B.; Hanson, E.; Puts, N. A.; Cornelissen, L.; Levin, A. R.
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BackgroundDifferences in sensory processing are a core feature of autism spectrum disorder. Hyper- and hyporesponsivity to sensory stimuli have historically been conceptualized as separate constructs but may co-occur within individuals. Sensory processing may impact both lower and higher-level cognitive processes; thus, it is crucial to understand the relationships between hyper- and hyporesponsivity within and across modalities, as well as the relationship between sensory processing and other aspects of development in both autistic and typically developing (TD) children. MethodsIn 3-4-year-old children (n=41 autism; n=37 TD), we assessed relationships between sensory hyper- and hyporesponsivity both within and across visual, auditory, touch, and oral sensory modalities as measured by caregiver report. Secondary analyses evaluated relationships between sensory responsivity, social communication, and cognitive abilities. FindingsWe found a positive correlation between sensory hyper- and hyporesponsivity ({rho} = .788, p < .001). These associations persisted within groups and within and across modalities. There are positive associations between sensory responsivity and social interaction, communication, and nonverbal developmental quotient, with associations between sensory responsivity and social communication driven by associations within the autism group. InterpretationThe positive correlations between hyper- and hyporesponsivity both within and across sensory modalities, which we term the "Sensory Paradox," may provide key clues to understanding sensory processing in autism and other neurodevelopmental disorders by pointing towards neural circuit-level mechanisms that may underlie neurodevelopmental conditions. FundingThis study was funded by NIH/NINDS 1R01NS134948-01 (ARL), NIMH T32MH112510 (KDC), the Simons Foundation Autism Research Initiative (Award number 648277, ARL), and the Eagles Autism Foundation (ARL). Research in contextO_ST_ABSEvidence before this studyC_ST_ABSUp to 95% of autistic individuals are impacted by sensory processing differences. Across the full range of the autism spectrum, including individuals with profound ASD and self-advocates who speak publicly on issues of neurodiversity, improving sensory processing challenges is repeatedly noted as a common goal that would improve quality of life. Classical medical evaluation of sensory processing typically focuses on whether the structural pathways for transmission of sensory information are intact. The modulation of sensory information as it traverses these pathways, however, is a field ripe for further understanding. Initial reports have identified both hyper- and hyporesponsivity to sensory stimuli in autism, with some overlap between the two patterns of behavior. Added value of this studyThis study demonstrates the seemingly paradoxical finding that hyper- and hyporesponsivity are strongly positively correlated in both autistic and typically developing toddlers. This positive correlation persists within groups and within individual sensory modalities (sight, sound, touch, and oral), as well as across modalities. Implications of all of the available evidenceThe current findings, taken together with prior literature, support the Sensory Paradox - a framework for understanding sensory processing and the resulting sensory experience of autistic individuals which may also have key implications for a wider variety of neurological, psychiatric, and developmental conditions. Rather than considering hyper- and hyporesponsivity as static and opposing constructs, future work on the neurobiology, diagnosis, and management of sensory processing will benefit from considering the variable and context-dependent nature of sensory processing within individuals.
Girolamo, T.; Escobedo, A.; Butler, L.; Larson, C. A.; Campos, I.; Greene-Pendelton, K.
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Despite their relevance to outcomes in autism, little is known about how social drivers of health affect communication, especially in transition-aged autistic adolescents and young adults with structural language impairment. This knowledge gap limits our understanding of developmental trajectories and the ability to develop supports. This cross-sectional study examined the role of social drivers of health in communication abilities of minoritized autistic individuals ages 13 to 30. Participants (N = 73) completed language, nonverbal cognitive assessments, and social drivers of health (sense of community, unmet services, barriers to services) measures. Data were analyzed descriptively and using mixed-effects modeling. More unmet service needs, more barriers to services, and lower sense of community were associated with greater social communication impairment. In turn, both unmet service needs and barriers to services were negatively associated with functional communication. In regression modeling, language scores contributed to functional communication, and sense of community to social communication impairment. Findings support the relevance of language and social drivers of health in communication. Future work should focus on possible bidirectional relationships between these variables and explore and real-world translation. Lay AbstractWhere people live, work, and spend their time is important. Environments can have more or less services or differ in how much they help people feel like they belong to their community. These parts of the environment are called social drivers of health. Social drivers of health are important for outcomes in autism, but we do not know much about them in racially and ethnically minoritized autistic teens or young adults. We recruited 73 minoritized autistic teens and young adults (ages 13 to 30 years) and 52 caregivers to our study. Autistic teens and young adults did language and NVIQ tests on Zoom. Autistic teens, young adults, and caregivers also answered questionnaires. Sense of community was important for social communication impairment, and language was important for real-world communication. These findings tell us two things. First, thinking about how to create supportive communication environments for autistic teens and adults is important. Second, understanding how social drivers of health shape outcomes is important. In the future, we should focus on how improving environments can help minoritized autistic teens and adults meet their communication goals.
Bachrach, M. N.; Ilan, M.; Faroy, M.; Michaelovsky, A.; Zagdon, D.; Sadaka, Y.; Bar Yosef, O.; Aran, A.; Begin, M.; Zachor, D.; Avni, E.; Koller, J.; Menashe, I.; Kolodny, T.; Dinstein, I.; Meiri, G.
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In many high-income countries, autistic children attend preschools ranging from exclusive special education (SE) to inclusive mainstream education (ME). These settings differ in staff expertise, capacity to implement structured autism interventions, exposure to typically developing peers, and cost. In this prospective longitudinal study, we compared 119 autistic children across three preschool settings in southern Israel: SE with TABAM services, an extended intervention program; SE without TABAM; and ME. Children completed behavioral assessments at the beginning and end of their first preschool year, yielding measures of cognition, autism symptom severity, joint attention, verbal abilities, adaptive behaviors, and aberrant behaviors. Developmental trajectories varied across children, with some demonstrating marked gains and others showing limited progress. On average, developmental changes were modest across most domains and were not explained by educational setting. The only exception was verbal ability, where children in SE with TABAM showed greater gains than children in SE without TABAM. These findings suggest that autistic children in ME and SE demonstrated broadly similar developmental trajectories during their first preschool year. Further large-scale research is needed to identify which children may benefit more from specific educational environments and intervention approaches, and to inform ongoing efforts to optimize preschool services for autistic children.
Sörnyei, D.; Kovacs, F. M.; Benedek, T.; Ori, D.; Farkas, K.
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The Autism Spectrum Quotient (AQ-50) is widely used to assess autistic traits, yet its Hungarian version has not been psychometrically evaluated. We assessed the reliability, factor structure, temporal stability, convergent validity, and clinical utility of the Hungarian AQ-50 and a revised translation (AQ-50-HU-R) in two samples (N1 = 1967; N2 = 423), including autistic and non-autistic participants. The AQ-50-HU-R showed high internal consistency and test-retest reliability. A bifactor model provided the best fit ({chi}2[1125] = 1650.433, p < 0.001; CFI = 0.991; TLI = 0.990; RMSEA = 0.033 [90% CI = 0.030-0.037]; SRMR = 0.083), with 71% of common variance attributable to a general autistic traits factor. The total score distinguished clinically verified autistic participants from participants reporting no ASD diagnosis (AUC = 0.906), with a cutoff of 25. Associations with ADOS scores were weak or nonsignificant. The AQ-50-HU-R is best interpreted as a reliable total-score screening measure, supporting referral for comprehensive autism assessment.
Christopher, K.; Elias, R.; Lord, C.
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Caregivers raising a child with autism experience increased parental burden, though many have positive experiences as well. Perceived negative impact, a form of parental burden, is the degree to which a caregiver reports negative financial, social, and emotional experiences associated with having a child with a disability. This longitudinal study defined parental perceived negative impact trajectory classes across time, determined predictors, and explored the relationship between functional adult outcomes and impact class. Participants (n = 209) were comprised of caregivers whose child received an ASD diagnosis or had developmental delay. Latent class growth modeling defined three trajectory classes (e.g., low [n = 68, 32.54%], medium [n = 98, 46.89%], and high [n = 43, 20.57%]). Regressions revealed the low impact trajectory class had more caregivers who were racial minorities, less educated, and more socially supported. Membership in the high negative impact class was associated with increased childhood hyperactivity, irritability, autism symptomology, and poor adaptive skills. The low negative impact trajectory class was associated with young adults achieving more functional outcomes. Overall negative impact declined over time all for all classes, though never completely subsided. Possible implications for clinical practices are discussed
Pham, L.; Lee, A. K.; Estes, A.; Dager, S.; (Astley) Hemingway, S.; Thorne, J.; Lau, B. K.
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PurposeNarrative discourse, or storytelling, is used in daily conversational interaction and reveals higher level language skills that may not be well captured by standardized assessments of language. Many individuals with autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD) show difficulty with pragmatic language skills and narrative production offers one method of assessing expressive and pragmatic language skills in an ecologically relevant manner. This study investigated narrative abilities on both local and global levels of adolescent/young adults with ASD and FASD, and their age- and sex-matched comparison group. MethodNarratives from forty-five adolescents/young adults, 11 with ASD, 11 with FASD, 23 age- and sex-matched neurotypical comparison group, were elicited using a wordless storybook. They were then transcribed orthographically, formatted to the Systematic Analyses of Language Transcript (SALT) convention, and scored based on the narrative scoring scheme (NSS). Additional analyses investigated local language measures such as the number of mental state and temporal relation terms produced, as well as global language measures including the mean length of utterance, total number of different words, total number of words, total number of utterances, rate of speech, and the narrative scoring scheme total score. ResultsOn local language measures, no significant group differences were found. On global language measures, many aspects of narrative production in the ASD and FASD groups were comparable to each other and to the comparison group, although important differences were observed for the total number of words produced and rate of speech. ConclusionsGiven significant variability observed within groups, these findings suggest that language abilities should be assessed at an individual level. Future research should also consider additional variables that influence narrative production such as motivation, distractibility, or decision-making of individual subjects.
Sadik, A.; Lundberg, M.; Khandaker, G. M.; Pardinas, A. F.; Lee, B. K.; Madley-Dowd, P.; Magnusson, C.; Rai, D.
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Objective: To understand if sociodemographic and neuropsychiatric characteristics of people diagnosed with autism in the United Kingdom (UK) and Sweden have changed since 2010. Design: Cross-context population-based cohort studies. Setting: UK primary care records from 2010-2023 and Swedish population-wide register linkages from 2010-2021 Participants: 24,537,039 individuals age 16 or over, registered with general practices in the UK, including 141,119 with an autism diagnosis. 9,096,874 people age 16 or over in the Swedish Total Population Register, including over 100,817 with an autism diagnosis. Main outcome measures: Annual age-standardised incidence and prevalence of adult autism diagnoses within different sociodemographic groups. Annual age-standardised proportion of adults with new autism diagnoses, lifetime autism diagnoses, and no autism diagnoses, with prior records of other neuropsychiatric conditions or medications. Results: Incident adult autism diagnoses were consistently higher in Sweden than the UK, however incidence increased rapidly in the UK after 2020. Incident diagnoses increased fastest for 16-25-year-olds and females in both nations, as well as people in White ethnic groups in the UK and people with Swedish-born parents in Sweden. For example, in the UK in 2023 the age-standardised incidence of autism diagnoses among 16-65 years olds was 11 diagnoses per 10,000 person-years (95%CI: 10.7, 11.3) in the White ethnic group and 2.2 diagnoses per 10,000 person-years (95%CI: 1.9, 2.5) in the South Asian ethnic group. Over time there has been a consistent decline in the proportion of autistic adults with a prior diagnosis of epilepsy, psychosis and intellectual disability and an increase in the proportion with a prior diagnosis of ADHD, anxiety, depression and several other mental illnesses. For example, in the UK between 2010 and 2023 the age-standardised proportions of newly diagnosed autistic adults with prior records of epilepsy decreased from 10% (95%CI: 7.6, 13) to 4% (95%CI: 3.6, 4.5), while the proportion with records of anxiety increased from 28.7% (95%CI: 24.4, 33.6) to 58.3% (95%CI: 56.6, 60.1). Mental health conditions were generally more common in females and the reduction over time in intellectual disability was greater in females than males. Conclusions: The socio-demographic and neuro-psychiatric characteristics of individuals diagnosed as autistic have changed dramatically since 2010, a phenomenon observed both in the UK and Sweden. The extent to which these changes indicate nuanced recognition of autism or broadening of diagnostic practice needs investigation.
Mierau, S. B.; Thom, R. P.; Ravichandran, C. T.; Nagy, A.; Rice, C.; Macenski, C.; Keary, C. J.; Palumbo, M. L.; McDougle, C. J.; Neumeyer, A. M.
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PurposeMany genes have been identified in autism spectrum disorder (ASD). Yet how many adults with ASD receive recommended genetic testing and their outcomes is unknown. We investigated the percentage of adults with ASD with documented genetic testing in our ASD specialty clinic and the percentage with positive findings. MethodsAdults were identified through search of our data repository and ASD diagnoses confirmed using record review by psychiatrists specializing in ASD. Patients were included (N=630) who had at least one visit with a qualifying clinician between 5/1/2010 and 12/15/2020. Data were collected through manual retrospective record review. ResultsOnly 41% of the adults with ASD (261/630) had a documented history of genetic testing. Genetic testing was declined by patients or families for 11% of records and not recorded in 47%. Mean (SD; range) age for the 261 adults was 28.5 (5.3; 22-58) years; 26% were female and 73% had intellectual disability (ID). The genetic testing method was recorded in 91% (238). Only 54% of these patients had testing using a recommended method (chromosomal array, autism/ID sequencing panel, or exome sequencing). Few adults received testing with sequencing technologies. A genetic cause of ASD was found in 28%. ConclusionASD-related genetic testing is underutilized in adults with ASD. Nearly half of the adults in our sample lacked documentation of genetic testing. Thus, the percentage who received testing may be even lower than reported. Adults with ASD may benefit from having their genetic testing history reviewed in the clinic and the recommended testing performed.
Girolamo, T.; Birmingham, M.; Patel, K.; Ghali, S.; Campos, I.; Greene-Pendelton, K.; Canale, R.; Larson, C.; Sterling, A.; Shogren, K.
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Self-determination plays an important role in outcomes in autism and shows intersectional disparities. Yet, little is known about the role of individual differences or social drivers of health in the development of self-determination. Understanding these factors is key for developing effective supports. This mixed-methods convergent study examined self-determination in racially and ethnically minoritized autistic individuals and caregivers. Participants ages 13 to 30 (N = 73) varying widely in language and cognitive ability and caregivers (n =52) completed the Self-Determination Inventory. Autism traits and sense of community predicted caregiver report of self-determination, and autism traits and language predicted self-report of self-determination, consistent with DisCrit and Diversity Science. Self-Determination Inventory interviews of a subset of participants (n = 13) and caregivers (n = 9) were analyzed using inductive thematic analysis. Themes pointed to the role of the intersection of race and disability in shaping self-determination. Altogether, findings point to the importance of these frameworks, environmental influences, and multi-informant perspectives in characterizing self-determination. Future work should focus on the impact of environmental factors in self-determination in minoritized autistic individuals during the transition to adulthood.
Girolamo, T.; Escobedo, A.; Ghali, S.; Greene-Pendelton, K.; Campos, I.; Ram-Kiran, P.
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BackgroundRacially and ethnically minoritized (minoritized) autistic individuals face intersectional disparities in services access in the transition to adulthood. Our understanding of disparities is limited by systematic exclusion from research and inadequate approaches to characterizing services. To address these gaps and effect advocacy, this study: 1) examined services received, unmet service needs, and barriers in minoritized autistic adolescents and adults, and 2) determined if language, NVIQ, and autism traits predict services when deployed as binary or continuous variables. MethodAcademic and community partners tailored CBPR to a local context. Participants (N = 73, ages 13-30) completed a behavioral assessment protocol. Participants and caregivers provided information on services received, unmet service needs, and barriers to services. Data were analyzed using descriptives and regression. ResultsParticipants received multiple services yet had multiple unmet service needs and barriers. Effects of services differed by approach. Language impairment, but not language scores, predicted receiving more services. High levels of autism traits and autism trait scores predicted more unmet service needs. ImplicationsWhile the number of services and unmet service needs were similar to prior work, differences in individual service variables and effects support attention to heterogeneity. Findings support intersectional approaches to CBPR and autism research. Learning outcomesAfter reading the article, the learner will be able to: 1) summarize knowledge gaps about access to services; 2) explain the relevance of tailoring CBPR to a local context; and 3) describe implications of findings for clinicians and autistic individuals.
Larson, C.; Taverna, E.; Mohan, A.; Girolamo, T.; Fein, D.; Eigsti, I.-M.
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BackgroundThere is striking heterogeneity in long-term outcomes associated with an autism diagnosis, and the role of language in outcomes has not been sufficiently characterized. This study characterized the roles of structural language ability and early language milestones in long-term social-emotional, educational, and vocational outcomes in individuals with autism and individuals who have lost the autism diagnosis (LAD) relative to neurotypical (NT) peers, over and above the potential confounding role of social skills. MethodsParticipants were individuals with autism (n = 39) or LAD (n = 32) and NT peers (n = 38) age 12-39 years. Participants completed standardized and survey-based measures of social-emotional functioning and educational and vocational attainment. Language measures were an experimental structural language task (grammaticality judgement) and caregiver-report of early language milestones. Linear and generalized linear models tested how groups differed in the association between language and outcomes. ResultsLanguage was associated with certain outcomes for all groups, though there were group differences in the nature of these associations. In autism relative to LAD and NT peers, structural language was differentially associated with anxiety/depression, and language milestones were differentially associated with social relationships, quality of life, educational attainment, and full-time employment status. ConclusionsFindings suggest unique pathways of influence between language and outcomes in individuals with autism versus LAD and NT peers. This evidence suggests that current language and early language development must be considered in social-emotional functioning and in educational and vocational supports from childhood through adulthood for individuals diagnosed with autism in childhood.
Nitzan, T.; Bachrach, M.; Ilan, M.; Faroy, M.; Waissengreen, D.; Michaelovsky, A.; Zagdon, D.; Sadaka, Y.; Omer Bar Yosef, O.; Zachor, D.; Avni, E.; Menashe, I.; Meiri, G.; Koller, J.; Dinstein, I.
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BackgroundMost preschool autistic children exhibit substantial language delays, yet only [~]25% remain minimally verbal (MV) throughout life. Previous studies have demonstrated that development of expressive language abilities is crucial for improving long-term outcomes. This study aimed to identify early predictors of later expressive language development specifically in MV preschool autistic children. MethodsWe analyzed prospective data collected from 99 MV autistic children, who were 27.7 months old at diagnosis, on average. All children completed an ADOS-2 assessment at diagnosis and again 12-24 months later. We classified children into three expressive language groups at follow up: MV, one-word phase, and phrases phase. Logistic regression analyses were used to identify significant predictors of expressive language abilities at follow up. Predictors included ADOS-2 social affect (SA) calibrated severity scores (CSS), ADOS-2 restricted and repetitive behavior (RRB) CSS, cognitive scores, and joint attention (JA) scores, derived from a summation of six ADOS-2 items. ResultsChildren who successfully developed expressive language abilities at follow-up (i.e., were in the one-word or phrases groups) had significantly lower ADOS-2 SA CSS and JA scores at diagnosis. Logistic regression analyses demonstrated that both ADOS-2 SA CSS and JA scores at diagnosis predicted expressive language outcomes while cognitive scores and ADOS-2 RRB CSS did not. Moreover, concurrent improvements in JA were significantly larger in children who developed expressive language. ConclusionsPreschool MV autistic children with better social abilities, and specifically JA abilities, at diagnosis were more likely to develop expressive language within 1-2 years. JA scores derived from the ADOS-2 offer an easily accessible and widely available measure with important prognostic value for these children.
Girolamo, T.; Butler, L.; Parish-Morris, J.
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PurposeThough co-occurring structural language impairment (LI) in autism is common and predicts long-term outcomes, little is known about LI in autism beyond childhood. One challenge to closing this gap is that there is no consensus definition of LI. This study focuses on LI in autistic adolescents and young adults, asking to what extent clinical classification differs by definition and examining performance across language measures, nonverbal intelligence (NVIQ), and autism traits. MethodParticipants (N = 75; ages 13-30) varying in levels of autism traits completed norm-referenced measures of overall expressive language, overall receptive language, receptive vocabulary, expressive vocabulary, nonword repetition, and NVIQ. Scores were compared to epidemiological definitions for LI varying in criteria and cutoffs from -1 SD to -1.5 SD. Data were analyzed using descriptives and clustering. ResultsMore stringent definitions yielded a greater proportion of participants meeting LI criteria, and more stringent cutoffs for LI yielded greater overall consistency in clinical classification across individual language measures, but there was no one-to-one ratio between cutoff and clinical classification. Clustering indicated three profiles differentiated on the basis of language and nonverbal cognitive skills, but each cluster was heterogeneous. Individual performance also varied across language measures. DiscussionFindings support multi-domain approaches to characterizing language skills in autistic adolescents and adults, including those with LI. Future work is needed to understand language skills in autism beyond childhood and how to develop effective assessment practices.