Importance Autistic adults experience suboptimal health outcomes. Likewise, attention-deficit/hyperactivity disorder (ADHD) is linked to poor health outcomes in the general population, yet little is known about co-occurring ADHD and its links with poor health outcomes among autistic adults. Objective To determine the prevalence of ADHD and ADHD medication prescriptions and to examine associations between health outcomes and both ADHD co-occurrence and ADHD medication prescriptions among autistic adults. Design, Setting, and Participants Population-based cohort study of US Medicaid-enrolled adults aged 18 years and older, including autistic adults with and without co-occurring intellectual disability (ID), adults with ID without autism, and adults from a random sample of Medicaid-enrolled individuals from 2008 to 2019. Analyses were completed September 2023 to September 2024. Exposures Autism, ADHD, and ID using validated algorithms from the Chronic Conditions Warehouse. Main Outcomes and Measures Prevalence rates of co-occurring ADHD, ADHD medication prescriptions, substance use, cardiovascular conditions, injury in autism without ID, ID without autism, autism with ID, and the general population. Results The study included 3 506 661 patients (mean [SD] age, 33.5 [15.6] years; 1 854 892 [52.9%] female; 702 694 [20.0%] Black, 587 048 [16.7%] Hispanic, and 1 786 703 [60.0%] White). Compared with the general Medicaid-enrolled population (1 846 102 patients), which had 49 523 patients (2.7%) with co-occurring ADHD diagnoses, this study found elevated rates of ADHD in autism without ID (280 195 patients [26.7%]; prevalence ratio [PR], 5.1; 95% CI, 4.4-5.9), autism with ID (261 061 patients [40.2%]; PR, 6.8; 95% CI, 6.0-7.7), and ID without autism (1 119 303 patients [19.0%]; PR, 4.4; 95% CI, 4.0-5.0). A total of 117 704 adults (26.6%) with ADHD received an ADHD medication prescription. The study identified that rates of substance use were higher among clinical groups with co-occurring ADHD. For example, 9886 of 74 675 autistic adults with ADHD (13.2%) had substance use disorder, compared with 11 782 of 205 520 autistic adults with no ADHD (5.7%). ADHD diagnoses were associated with higher rates of all health outcomes, regardless of group. Substance use was higher in both ID groups with ADHD diagnoses and ADHD medications, whereas injury and cardiovascular condition rates were lower in all ADHD groups who received ADHD medications. Conclusions and Relevance In this cohort study of Medicaid-enrolled adults, autistic adults experienced high rates of co-occurring ADHD and were more likely to receive ADHD medication prescriptions than adults in the general population. Negative health outcome rates are higher among autistic people with co-occurring ADHD, although ADHD medication prescriptions are associated with lower rates of negative health outcomes. Treating ADHD may improve health among autistic adults.
Diffusion MRI-based structural connectomes are increasingly used to investigate brain connectivity changes associated with various disorders. However, small sample sizes in individual studies, along with highly heterogeneous disorder-related manifestations, underscore the need to pool datasets across multiple studies to be able to identify coherent and generalizable connectivity patterns linked to these disorders. Yet, combining datasets introduces site-related differences due to variations in scanner hardware or acquisition protocols. These differences highlight the necessity for statistical data harmonization to mitigate site-related effects on structural connectomes while preserving the biological information associated with participant demographics and the disorders. While several paradigms exist for harmonizing normally distributed neuroimaging measures, this paper represents the first effort to establish a harmonization framework specifically tailored for the structural connectome. We conduct a thorough investigation of various statistical harmonization methods, adapting them to accommodate the unique distributional characteristics and graph-based properties of structural connectomes. Through rigorous evaluation, we show that our MATCH algorithm, based on the gamma-distributed model, consistently outperforms existing approaches in modeling structural connectomes, enabling the effective removal of site-related biases in both edge-based and downstream graph analyses while preserving biological variability. Two real-world applications further highlight the utility of our harmonization framework in addressing challenges in multi-site structural connectome analysis. Specifically, harmonization with MATCH enhances the generalizability of connectome-based machine learning predictors to new datasets and increases statistical power for detecting group-level differences. Our work provides essential guidelines for harmonizing multi-site structural connectomes, paving the way for more robust discoveries through collaborative research in the era of team science and big data.
Background and objectives:Macrocephaly is among the most common findings in neurofibromatosis type 1 (NF1) and may be associated with other clinical manifestations of the genetic syndrome. NF1-specific growth charts that account for expected macrocephaly may increase sensitivity to detect atypical growth. We aimed to produce NF1-specific growth charts of head circumference for the age range of 0 to 3 years and to assess their potential clinical impact. Methods:Using electronic health records from the Children's Hospital of Philadelphia, we collected head circumference measurements from children with NF1 and a community control cohort seen at scheduled well-child visits. We compared head circumference normed using Center for Disease Control (CDC) growth charts between these groups over time. We constructed NF1-specific growth charts using two independent methods. Finally, we used mixed-effects models to relate the resulting centile scores with developmental delay assessed with the Survey of Well-being of Young Children. Results:Our dataset contained 2180 observations from 305 individuals (167 male) with NF1, and 104,750 observations from 16,742 individuals (8809 male) in the community control cohort, all aged 0 to 3 years old. Head circumference was significantly elevated in NF1 throughout the age range (P adjusted <0.05), but the effect sizes varied nonlinearly with age, starting moderate at 1 month (d = 0.56), then small at four months (d = 0.28), moderate again at 15 months (d = 0.58), and finally large at 28 months (d = 0.8). NF1-specific growth curves demonstrated slower rate-of-growth for head circumference in the first two months of life yet more sustained growth over time. Although none of the children with NF1 met the standard for microcephaly according to CDC charts, smaller head circumference benchmarked against NF1-specific charts was correlated with developmental delay (standardized beta = 0.24; P = 0.013). Discussion:We present the first NF1-specific growth charts for head circumference covering ages 0 to 3 years. Macrocephaly in NF1 becomes more exaggerated over time as rate-of-growth is sustained compared to controls. Smaller head size relative to NF1 growth expectations is not captured by CDC charts yet nevertheless relates to developmental delay, suggesting that NF1-specific charts may increase sensitivity to clinically concerning patterns of growth in children with NF1.
Background: To accurately measure quality of life among autistic young adults, researchers need surveys that are psychometrically validated for autistic populations. Researchers have demonstrated that the short version of the World Health Organization Quality of Life instrument (WHOQOL-BREF) has strong psychometric properties in the general population. While there has been some research exploring basic psychometric properties (reliability, convergent validity, etc.) of the WHOQOL-BREF in autistic populations, the underlying latent structure of the measure has not been tested in autistic adults. Our goal in the current study was to compare different confirmatory factor analysis (CFA) models to test which one best captured the underlying latent structure of the WHOQOL-BREF data in a sample of autistic young adults.Methods: 398 autistic young adults between the ages of 18-39 years completed the WHOQOL-BREF. Based on participant responses, we compared four a priori CFA models – correlated four-factor, unidimensional, higher-order, and bi-factor models – to demonstrate which model structure best captures the underlying latent structure of the measure in this population. Results: Similar to past research, the WHOQOL-BREF showed strong internal reliability in our sample of autistic young adult. The bi-factor model demonstrated the best fit to the data – demonstrating that the WHOQOL-BREF is best conceptualized as having both domain-specific quality of life factors (i.e., the Physical, Psychological, Environmental, and Social domains of the WHOQOL-BREF) and a general quality of life factor. Conclusion: Our results provide researchers with psychometric validation of the underlying latent structure of the WHOQOL-BREF in autistic populations. Items on the WHOQOL-BREF capture both domain-specific and general quality of life among autistic young adults. Researchers can use the bi-factor model to accurately capture multiple dimensions of quality of life in autistic adults, advancing the ways that the WHOQOL-BREF can be used as a measure of quality of life among autistic people.
Although insistence on sameness (IS) and compulsions occur across a wide range of neurodevelopmental (NDD) and neuropsychiatric (NPD) conditions, they are typically only examined within the confines of specific singular disorders. Indeed, while anxiety has been consistently linked to IS in autism and compulsions in obsessive-compulsive disorder (OCD), no empirical study has examined these associations in a sample spanning a range of NDD and NPD. Therefore, this study utilized a large sample of children and adolescents spanning several NDD and NPD to examine whether anxiety shows different patterns of association with IS or compulsions within and across diagnostic groups. The transdiagnostic sample encompassed youth (mean age = 10.36 [3.40]; N = 1852) diagnosed with autism ( N = 387), attention-deficit hyperactivity disorder (ADHD; N = 931), internalizing disorders ( N = 208), OCD/Tic disorder ( N = 59) and oppositional defiant/conduct disorder (ODD/CD; N = 267). IS and compulsions were assessed using the Repetitive Behavior Scale-Revised, and anxiety using the Screen for Child Anxiety Related Disorders. Within-group comparisons revealed that, in the autism, ADHD, and OCD/Tic groups, anxiety showed a slightly stronger association with IS than compulsions although effect sizes indicated small to no effect ( q < 0.24). Between-group comparisons showed that interrelationships between anxiety, IS, and compulsions did not differ across groups, except for the association between IS and compulsions, which was slightly weaker in the ADHD group compared to the autism ( z = 4.20) and ODD/CD groups ( z = 3.32). Findings affirm the transdiagnostic nature of IS and compulsions and suggest that anxiety plays a key role in these behaviors, irrespective of primary diagnosis.
Despite the well-documented benefits of driving for life satisfaction and mental health, there remains a gap in understanding the unique needs of the autistic community. Our objective was to address this gap by learning about autistic adolescents’ and their caregivers’ perspectives on factors that promote independent driving. Semi-structured interviews were conducted with autistic adolescents and their caregivers. Adolescents with an autism diagnosis, aged 16–24, and their caregivers each completed interviews lasting approximately 45 min. Topics included travel behaviors, attitudes toward licensing, family decision-making, and sources of information and support. Four central themes emerged: (1) Motivation and Readiness to Drive; (2) Cognitive and Sensory Factors; (3) Support Systems and Training; and (4) Facilitators and Success Strategies. Caregivers who viewed driving as a pathway to independence were motivated to support their adolescent’s learning, often balancing personal anxieties with the desire to foster autonomy. Adolescents built readiness through varied travel experiences and developed confidence through repeated practice and tailored instruction. Cognitive and sensory challenges—such as anxiety, multitasking, and sensory sensitivities—shaped learning trajectories and required adaptive strategies. Support systems involving caregivers, professionals, and peers were essential in navigating these complexities and promoting skill development. These findings underscore the importance of a relational, family-centered approach and the need for early, individualized conversations about driving. Ensuring autistic adolescents and their families can access timely, appropriate resources is critical. Future research should expand mobility pathways and address autism-specific barriers to driving to refine instructional supports and enhance independence.
Service providers and researchers need a better understanding of autistic perspectives on independence and daily living skills (DLS). These perspectives will help service providers and researchers create meaningful, accessible, and effective supports that promote the type of independence autistic people desire. We address this knowledge gap by asking autistic young adults about their perspectives on independence, and how DLS help them meet their independence goals. Fifteen autistic young adults (ages 18–30 years) without co-occurring intellectual disability completed qualitative interviews. Participants provided reflections and insights about what living independently meant to them and how DLS were related to their independence goals. After transcribing and coding the interviews using NVivo, we used a modified grounded theory approach to generate summative themes. Thematic analysis revealed five summative themes: (1) self-sufficiency and autonomy, (2) varying levels of support to promote independence, (3) barriers to achieving desired level of independence, (4) the link between DLS and independence, and (5) distance between ‘normative’ standards of independence and the level of supports autistic adults desire to maximize their quality of life. Autistic young adults provided insights into the numerous ways they conceptualize and achieve their independence goals and highlighted heterogeneity in what ideal levels of independence look like for them. Participants reflected on the relationship between completing DLS – both with and without supports – and meeting their personal goals for independence. Our findings suggest that the heterogeneity of varying levels of independence goals sought by autistic young adults reflects a diverse range of individual aspirations, abilities, and support needs.
Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants. Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132–140) and general population (N=1,224, n per scale=406–411) teenagers (14–17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people. Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported. We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.
Autistic adolescents and their families may experience barriers to transportation, including independent driving, which is critical to supporting quality of life and engagement in social, educational, and employment opportunities. Healthcare providers may feel unprepared to provide guidance to autistic adolescents, although they are among the professionals families turn to for guidance. This study describes providers’ experiences supporting autistic adolescents and families in the decision to pursue licensure and identifies barriers experienced in providing support. We conducted interviews with 15 healthcare providers focused on how they support autistic adolescents and their families in navigating topics related to independence, driving, and transportation. Key themes identified included: importance of understanding adolescents’ perspectives and motivations, approaches to readying caregivers for children to pursue driving, and role of providers in fostering agreement between adolescents and caregivers. Results reflect healthcare providers as intermediaries between autistic adolescents and caregivers making the decision to pursue licensure and bring families to consensus. Our findings emphasize the importance of healthcare providers, in collaboration with community-based providers, in supporting autistic adolescents and their families considering licensure. Improving conversations between providers and families provides opportunity to better support quality of life among autistic adolescents and their caregivers navigating the transition to independence.
PURPOSE:Clinicians rarely solicit community feedback on psychological assessment reports. This study addresses this knowledge gap to: (1) improve the usefulness of reports for patients and families, (2) increase access to needed services, and (3) make reports accessible for autistic people and their families. METHODS:An autistic researcher and a non-autistic researcher jointly conducted qualitative interviews with autistic young adults, caregivers, and a service provider. Participants read a de-identified psychological assessment report about an autistic young adult with intellectual disability seeking resources for his transition to adulthood. Participants provided feedback about (1) how easy the report was to read, (2) how useful the report seemed, and (3) perceptions of language (i.e., empowering/offensive/neutral). RESULTS:Autistic young adults, caregivers, and the service provider all expressed a desire for short and clear reports in bulleted format. Caregivers stressed the importance of (1) using simple language to describe diagnostic testing and (2) including comprehensive resources, and autistic young adults expressed the importance of (1) including information about daily routines, habits, and interests and (2) giving patients' long-term goals the same consideration as caregivers' long-term goals. CONCLUSION:We highlight that standard psychological assessment reports have not effectively met the needs of autistic people and family members. Autistic people and caregivers prefer brief reports written in plain language that include more information about the patients' interests, routines, and preferences and less detailed information about psychological tests. Our findings identify ways to improve the usefulness and readability of psychological assessment reports for autistic people.
Licensure is an option for some autistic adolescents and families that increases mobility by enabling independent travel to employment, school, and social activities. The objective of this study was to identify current strategies used by healthcare providers (HCPs) in their guidance to autistic adolescents and families on the transition to independent driving. Semi-structured interviews were conducted with 15 HCPs. The team’s previous research, literature review and expert feedback informed the development of the interview guide. A content analysis approach was used in the coding of transcripts, nine of which were double coded. Study team members reviewed coded transcripts, provided and discussed narrative summaries, and identified themes. Interviews were conducted with physicians, social workers, psychologists, therapist and a nurse practitioner. HCP identified their perceptions of autistic adolescents’ strengths and weaknesses to be addressed in their individualized approaches. They described using clinical interactions as time to address licensure and driving, but also referred to specialists as needed. HCPs described using existing resources, but also provided a wish list of future resources. HCPs use an individualized approach for guidance in the transition to independent driving, considering the unique needs of autistic adolescent patients and families. These HCPs identified a clear need for tailored resources and guidance they can use in support of independent driving when appropriate for their patients and families.
Objective Survivors of pediatric brain tumors (SPBT) are at risk for social deficits, fewer friendships, and poor peer relations. SPBT also experience reduced brain connectivity via microstructural disruptions to white matter from neurological insults. Research with other populations implicates white matter connectivity as a key contributor to poor social functioning. This case-controlled diffusion-weighted imaging study evaluated structural connectivity in SPBT and typically developing controls (TDC) and associations between metrics of connectivity and social functioning.Methods Diffusion weighted-imaging results from 19 SPBT and 19 TDC were analyzed using probabilistic white matter tractography. Survivors were at least 5 years post-diagnosis and 2 years off treatment. Graph theory statistics measured group differences across several connectivity metrics, including average strength, global efficiency, assortativity, clustering coefficient, modularity, and betweenness centrality. Analyses also evaluated the effects of neurological risk on connectivity among SPBT. Correlational analyses evaluated associations between connectivity and indices of social behavior.Results SPBT demonstrated reduced global connectivity compared to TDC. Several medical factors (e.g., chemotherapy, recurrence, multimodal therapy) were related to decreased connectivity across metrics of integration (e.g., average strength, global efficiency) in SPBT. Connectivity metrics were related to peer relationship quality and social challenges in the SPBT group and to social challenges in the total sample.Conclusions Microstructural white matter connectivity is diminished in SPBT and related to neurological risk and peer relationship quality. Additional neuroimaging research is needed to evaluate associations between brain connectivity metrics and social functioning in SPBT.
Background:Extra-axial cerebrospinal fluid (eaCSF) refers to the CSF in the subarachnoid spaces that surrounds the brain parenchyma. Benign enlargement of the subarachnoid space (BESS), a condition marked by increased eaCSF thickness, has been associated with macrocephaly and may be associated with subdural collections. However, diagnosis of BESS is complicated by the lack of age-specific normative data which hinders rigorous investigation of its clinical associations. Growth charts of eaCSF could shed light on normal CSF dynamics while also providing a normative benchmark to assist the diagnosis of BESS and other associated conditions. Methods:We accessed clinically-acquired T1w MRI scans from 1226 pediatric patients to form a clinical control cohort. Nine scans from subjects with a diagnosis of BESS from a board-certified pediatric neuroradiologist were also reviewed. SynthSeg was used to segment each T1w scan into various tissue types, including eaCSF. Growth charts of eaCSF were modeled using the clinical control cohort. The confirmed BESS cases were then benchmarked against these charts to test the performance of eaCSF growth charts. Results:eaCSF thickness varied nonlinearly with age, steadily decreasing from birth to two years, then trending upwards in early adolescence. Seven of the nine patients with a clinical diagnosis of BESS were above the 97.5 th percentile for their age for at least one eaCSF measure. Centile scores were able to distinguish BESS cases from controls with an area under curve (AUC) greater than 0.95. Discussion:eaCSF thickness evolves in a dynamic pattern throughout childhood and adolescence. Patients with BESS can be differentiated from clinical controls using computational measurements of eaCSF thickness paired with normative modeling. Our findings demonstrate the feasibility of computational extraction of eaCSF with a potential point of clinical relevance, delineation of BESS diagnosis. Enhanced understanding of normative eaCSF is critical in further investigations its clinical associations.
ImportanceMood disorders are prevalent among adolescents and young adults, and their onset often coincides with driving eligibility. The understanding of how mood disorders are associated with youth driving outcomes is limited.ObjectiveTo examine the association between the presence of a mood disorder and rates of licensing, crashes, violations, and suspensions among adolescents and young adults.Design, Setting, and ParticipantsThis cohort study was conducted among New Jersey residents who were born 1987 to 2000, age eligible to acquire a driver’s license from 2004 to 2017, and patients of the Children’s Hospital of Philadelphia network within 2 years of licensure eligibility at age 17 years. The presence of a current (ie, ≤2 years of driving eligibility) mood disorder was identified using International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) or International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes. Rates of licensure and driving outcomes among youths who were licensed were compared among 1879 youths with and 84 294 youths without a current mood disorder from 2004 to 2017. Data were analyzed from June 2022 to July 2023.Main Outcomes and MeasuresAcquisition of a driver’s license and first involvement as a driver in a police-reported crash and rates of other adverse driving outcomes were assessed. Survival analysis was used to estimate adjusted hazard ratios (aHRs) for licensing and driving outcomes. Adjusted rate ratios (aRRs) were estimated for driving outcomes 12 and 48 months after licensure.ResultsAmong 86 173 youths (median [IQR] age at the end of the study, 22.8 [19.7-26.5] years; 42 894 female [49.8%]), there were 1879 youths with and 84 294 youths without a mood disorder. A greater proportion of youths with mood disorders were female (1226 female [65.2%]) compared with those without mood disorders (41 668 female [49.4%]). At 48 months after licensure eligibility, 75.5% (95% CI, 73.3%-77.7%) and 83.8% (95% CI, 83.5%-84.1%) of youths with and without mood disorders, respectively, had acquired a license. Youths with mood disorders were 30% less likely to acquire a license than those without a mood disorder (aHR, 0.70 [95% CI, 0.66-0.74]). Licensed youths with mood disorders had higher overall crash rates than those without mood disorders over the first 48 months of driving (137.8 vs 104.8 crashes per 10 000 driver-months; aRR, 1.19 [95% CI, 1.08-1.31]); licensed youths with mood disorders also had higher rates of moving violations (aRR, 1.25 [95% CI, 1.13-1.38]) and license suspensions (aRR, 1.95 [95% CI, 1.53-2.49]).Conclusions and RelevanceThis study found that youths with mood disorders were less likely to be licensed and had higher rates of adverse driving outcomes than youths without mood disorders. These findings suggest that opportunities may exist to enhance driving mobility in this population and elucidate the mechanisms by which mood disorders are associated with crash risk.
Community brief Why is this an important issue?Many autistic teens and young adults rely on caregivers, siblings, family, and friends to give them rides to the places they need to go. Research has found that resources and services created specifically for autistic people can help them decide whether driving is right for them, and if so, then learn how to drive. However, little is known about if, and if so how, families find or use these resources and services. What was the purpose of this study?This study had three goals: (1) learn what driving resources and services autistic teens and young adults (and their families) use, (2) learn how they find these resources and services, and (3) learn what other things they think would help them make decisions about driving and learn how to drive. What did the researchers do?The researchers asked 33 caregivers of autistic teens and young adults without an intellectual disability (ID) (teens and young adults were 16-24 years old) questions about their experiences finding and using driving resources and services. These conversations were recorded and later typed out word for word. What were the results of the study?Caregivers said that they spend a lot of time looking for driving resources and services for their autistic teen or young adult. Many resources and services were not easy to use or helpful. Caregivers said that behind-the-wheel driving instructors with specific training teaching autistic individuals were the most helpful and/or wanted resource. However, caregivers also said that these instructors and their services were hard to find, cost a lot of money, and require families to spend a lot of time training with them to get results. In the future, caregivers said that making it easier to find and get driving resources and services (e.g., making them less expensive) was necessary. Caregivers also had strong interest in their family participating in support groups related to driving. What do these findings add to what was already known?Previous research has shown that training, resources, and services designed specifically for autistic people help prepare autistic teens and young adults to drive. Before our study, it was unclear if, and if so how, families actually use these resources and services in the real world, or outside of academic research. Families in our study said that it is hard to find or get access to driving resources and services, especially those created specifically for autistic populations. This difficulty is one reason why families think it is stressful and hard for autistic teens and young adults to learn how to drive. What are the potential weaknesses in the study?We only asked caregivers who lived in the Northeast part of the United States questions, so our findings may not be true for all families. Also, this study only asked questions to caregivers of autistic teens and young adults who did not have an ID. How will these findings help autistic adults now or in the future?Our findings can help autistic teens and young adults by showing what resources and services families use and want to use while they are learning how to drive or making decisions about if driving is right for them. Introduction: Autistic individuals who independently travel-or commute without companionship or supervision-report feeling more connected to social, education, and employment opportunities. Despite the potential for independent transportation to improve quality of life, little is known about what transportation-related resources, specifically driving focused ones, exist for autistic individuals or how they and their families find and use them. The objectives of this study were to characterize: (1) where and how families in the United States find driving-related resources for their autistic adolescents; (2) families' perceived availability and utility of identified resources; and (3) resources families believe should be developed.Methods: We conducted semi-structured interviews with 33 caregivers of autistic adolescents aged 16-24 years without an intellectual disability. We used a directed-content approach to develop and implement codes; three trained coders analyzed all transcripts (inter-rater reliability & GE;0.8 for all codes). Members of the research team reviewed coded data and created code summaries, which were then developed and discussed by the larger research team to determine final consensus.Results: Caregivers described a few existing resources that were helpful in guiding driving-related decisions. In addition, caregivers voiced that there were limited resources tailored to the unique needs that arise while teaching or learning how to drive, particularly ones that support their own and their adolescent's mental health. The limited resources and services identified as helpful-specifically support groups/perspectives of other families and specialized driving instructors-are seemingly difficult to find, costly, and/or perceived as having geographic- and time-related barriers.Conclusion: There is a critical need and opportunity for stakeholders of the autism community to both expand access to existing and develop novel driving-related resources for families with autistic adolescents, with a particular focus of supporting caregiver and adolescent mental health.
Many neurodevelopmental disorders can be understood as divergent patterns of neural interactions during brain development. Advances in neuroimaging have illuminated these patterns by modeling the brain as a network structure using diffution MRI tractography. However, characterizing and quantifying individual heterogeneity in neurodevelopmental disorders within these highly complex brain networks remains a significant challenge. In this paper, we present for the first time, a framework that integrates deep generative models with graph-based normative modeling to characterize brain network development in the neurotypical population, which can then be used to quantify the individual-level neurodivergence associated with disorders. Our deep generative model incorporates bio-inspired wiring constraints to effectively capture the developmental trajectories of neurotypical brain networks. Neurodivergence is quantified by comparing individuals to this neurotypical trajectory, enabling the creation of region-wise divergence maps that reveal latent developmental differences at each brain regions, along with overall neurodivergence scores based on predicted brain age gaps. We demonstrate the clinical utility of this framework by applying it to a large sample of children with autism spectrum disorders, showing that the individualized region-wise maps help parse the heterogeneity in autism, and the neurodivergence scores correlate with clinical assessments. Together, we provide powerful tools for quantifying neurodevelopmental divergence in brain networks, paying the way for developing imaging markers that will support disorder stratification, monitor progression, and evaluate therapeutic effectiveness.
Autism Spectrum Disorder (ASD) is a public health concern ranging along a continuum of severity. The neurobiological motives behind ASD have been widely explored with reports about aberrant brain anatomy and functional connectivity. However, research on the underlying structural connectivity alterations is limited. We propose the application of a novel connectomic measure called Network Normality Score (NNS) to identify brain abnormalities and quantity topological dissimilarities in individuals with ASD. We show that the network topology of structural connectivity is altered in ASD brains relative to healthy controls at the global and system levels. We demonstrate that structural connectivity differences are more pronounced in certain subnetworks. Finally, we quantify the association between network similarity and behavioral autism severity to show the efficacy of NNS as a neuroimaging measure.
In early childhood, many children diagnosed with autism spectrum disorder experience challenges in adaptive behavior that are needed to meet the demands of daily life. Mandelli et al. propose the use of a data-driven prediction model to identify unique subgroups of autistic preschoolers based on a ‘snapshot’ of adaptive skills.
OBJECTIVE: To examine rates of depression screening and positivity among autistic adolescents where electronic depression screening is administered universally; to compare rates between autistic and nonautistic youth; and to explore socio-demographic and clinical factors associated with screening completion and results.METHODS: We conducted a retrospective cohort study comparing 12-17-year-old autistic and nonautistic adolescents presenting for well-child care in a large pediatric primary care network between November 2017 and January 2019 (N = 60,181). Sociodemographic and clinical data, including PHQ-9-M completion status and results, were extracted digi-tally from the electronic health record and compared between autistic and nonautistic youth. Logistic regression explored the relationship between sociodemographic and clinical factors and screen completion and results, stratified by autism diag-nosis.RESULTS: Autistic adolescents were significantly less likely to have a completed depression screen compared to nonautistic adolescents [67.0% vs 78.9%, odds ratio (OR) = 0.54, P < .01]. Among those with a completed screen, a higher percentage of autistic youths screened positive for depression (39.1% vs 22.8%; OR = 2.18, P < .01,) and suicidal ideation/ behavior (13.4% vs 6.8%; OR = 2.13, P < .01). Factors as-sociated with screening completion and positivity differed between autistic and nonautistic groups.CONCLUSIONS: Autistic adolescents were less likely to have a completed depression screen when presenting for well-child care. However, when screened, they were more likely to en-dorse depression and suicide risk. This suggests disparities in depression screening and risk among autistic youth compared to nonautistic youth. Additional research should evaluate the source of these disparities, explore barriers to screening, and examine longitudinal outcomes of positive results among this population.