A Qualitative Examination of the Impact of COVID-19 on Transition Services for Autistic Youth.

The coronavirus (COVID-19) pandemic has caused widespread disturbances in many human and social service programs. Several studies have examined special education programming adaptations since the onset of the pandemic; however, there has yet to be documentation of pandemic-related changes to transition programming and the impact of these changes for autistic youth. The purpose of this qualitative study was to examine changes in transition programming for autistic youth amid the changing educational landscape. We conducted 12 interviews with caregivers (n = 5) and school providers (n = 7) about transition programming for autistic youth and the COVID-19 impact to these services. The pandemic had positive and negative effects on many aspects of transition programming, including student-focused planning, student development, interagency and interdisciplinary collaboration, family involvement, and program structure and attributes. Elucidation of the ways that the COVID-19 pandemic impacted transition programming from the perspectives of multiple stakeholders has important implications for school personnel and can help to inform the future directions for the field of transition programming research.

Demographic Factors Relate to Autism Diagnostic Certainty: Implications for Enhancing Equitable Diagnosis Among Youth.

OBJECTIVE: Autism diagnosis is fraught with inequities, including misdiagnosis and delayed identification that disproportionately affect minoritized youth. Aspects of clinician decision-making, particularly diagnostic certainty, may contribute to these inequities. Little is known about how closely clinician certainty corresponds with autistic traits, nor whether certainty relates to socio-demographic factors. METHOD: Autistic youth from the Simons Simplex Collection (N = 2,853) completed assessments after which clinicians rated how certain they were that the child met autism diagnostic criteria. Core clinical factors included clinician-observed (Autism Diagnostic Observation Schedule; ADOS) and parent-reported autistic traits (Social Communication Questionnaire), and an overall IQ score. RESULTS: Clinician certainty was moderately positively associated with parent-reported and observed autistic traits and was just as strongly negatively associated with IQ. Socio-demographic factors significantly associated with certainty, even accounting for clinical measures. Lower income and older child age related to less certainty. In contrast, clinicians rated higher certainty for youth identified as Hispanic, Black or African American, or Asian. Race and income also moderated the concordance between certainty with clinical factors. The agreement between higher ADOS scores and higher certainty was significantly weaker for lower-income families. The association between lower IQ and higher certainty was non-significant for Asian youth. CONCLUSIONS: Diagnostic certainty ratings do not necessarily correspond closely with the level of autistic traits, and clinician perception of autism diagnosis may be related to demographic factors. Caution is needed when relying on clinician certainty to inform diagnosis. Future research on diagnostic practices is urgently needed among diverse and minoritized communities.

Adverse Childhood Experiences in Autistic Children and Their Caregivers: Examining Intergenerational Continuity.

Although there is an urgent need to develop trauma-informed services for autistic youth, little research has evaluated adverse childhood experiences (ACEs) in autistic youth from an intergenerational perspective. 242 caregivers of autistic (n = 117) and non-autistic (n = 125) youth reported on ACEs that they experienced in their own childhoods and ACEs experienced by their children, as well as measures of depression, stress, and child autistic traits and behavioral concerns. Autistic youth and their caregivers both experienced significantly higher rates of ACEs than the non-autistic dyads. Intergenerational continuity, the association between caregiver and child ACEs, was significantly stronger for autistic youth. ACEs showed differential patterns of associations with parent depressive symptoms and child autistic traits across groups.

Frequency and correlates of augmentative and alternative communication use in an autistic inpatient sample.

Although augmentative and alternative communication (AAC) strategies are often used by autistic youth, little is known about the use of AAC in inpatient psychiatric settings. This study evaluated how demographic and clinical factors (e.g., language level, IQ) related to AAC use in a well-characterized sample of 527 autistic youth (78.7% male, mean age 12.94) who participated in the Autism Inpatient Collection. AAC use was common, with 42.5% of caregivers reporting at least one form of AAC. White children were more likely to use AAC than non-white children at the bivariate level. In regression analyses, young children were more likely to use AAC than older children. These results suggest the importance of provider training and improved equitable access to AAC.

A Pilot Study of Self-Regulation and Behavior Problems in Preschoolers with ASD: Parent Broader Autism Phenotype Traits Relate to Child Emotion Regulation and Inhibitory Control.

Little is known about the development of self-regulation processes during the preschool period in autism spectrum disorder (ASD). How parental characteristics such as the broader autism phenotype (BAP) relate to children's self-regulation is not well understood. Preschool-aged children with (n = 24) and without ASD (n = 21) completed an inhibitory control task and mothers reported on child emotion regulation and their own BAP traits. Children with ASD had lower emotion regulation, and emotion regulation was a protective factor in the association between ASD and internalizing behavioral concerns. Lability/negativity was highly overlapping with externalizing. Maternal BAP characteristics were differentially associated with all self-regulation outcomes across groups. Parental factors should be considered in emotion regulation interventions for young children with ASD.

Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being.

Background: Strikingly little research has considered how autistic adults experience pregnancy and parenthood, two key transition periods in adult development with potentially far-reaching implications for physical and psychosocial health outcomes across the lifespan. This article reviews the research on pregnancy and parenthood among autistic adults, to summarize existing research and identify future directions to advance this critical area of study. Methods: We conducted a systematic review of the literature on pregnancy and parenthood among autistic adults. Researchers extracted selected articles for key information, including methodology and sample size, study location, demographic characteristics of participants, measurement approaches, and key study findings. Results: Overall, we identified 13 studies that used a range of quantitative and qualitative approaches to study pregnancy experiences and outcomes and parenthood among autistic adults. The findings show that autistic adults (1) experience difficulties and dissatisfaction communicating with health care providers throughout pregnancy and birth, (2) are more likely to experience depression during and after pregnancy, and (3) experience higher rates of pregnancy complications, including preterm birth, cesarean delivery, and pre-eclampsia. During parenthood, autistic adults report lower parenting competence, experience parenthood as isolating, have difficulty communicating with professionals about their child and are questioned by providers about their ability to parent, experience high rates of involvement with child protective services, and express a desire for increased parenting support. Autistic adults also reported parenting strengths, including high levels of finding parenthood rewarding and putting their children's needs ahead of their own. Conclusions: A key limitation of the literature is the significant lack of sociodemographic diversity among participants, the small number of existing studies, and reliance on cross-sectional mono-method designs. Future research should be conducted in partnership with autistic adults to develop assessment and intervention approaches for supporting pregnancy health and parental well-being among diverse and underserved communities. Lay summary: Why is this topic important?: Very little is known about how autistic adults experience pregnancy and parenthood. Better understanding these experiences is important, because pregnancy and parenthood are key transition periods in adult development that are associated with a range of health outcomes later in life.What is the purpose of this article?: This article reviews the existing research on pregnancy and parenthood among autistic adults. We wanted to summarize what is already known, evaluate how that knowledge was created, and consider who has and who has not been included in this research to inform future research. We summarized 13 studies that considered pregnancy or parenthood among autistic adults.What did the authors find about pregnancy among autistic adults?: One study used data from hospital and birth records in Sweden, and showed that autistic women experience higher rates of pregnancy complications, such as preterm birth (early delivery before 37 weeks), cesarean delivery, and pre-eclampsia (a condition defined by high blood pressure during pregnancy). Two studies had autistic and nonautistic adults fill out online surveys about their experiences, and found that autistic adults are more likely to have depression during and after pregnancy, have more difficulty interacting with health care professionals at pregnancy appointments and during the birth process, and feel that information and support services for pregnancy do not always meet their needs. Autistic women also reported that sensory differences can make health care visits during pregnancy especially difficult, and described that they may experience anxiety and confusion when interacting with health care staff.What did the authors find about parenthood among autistic adults?: The research we reviewed showed that autistic adults experience strengths and difficulties in parenting. Many autistic adults found parenthood rewarding, but also felt isolated as parents and had difficulty communicating with health care professionals about their children. Autistic adults also had high rates of interacting with child protective services (CPS). Some research also found that autistic adults had lower self-confidence in parenting, although findings are mixed.What are the recommendations for future research and practice?: We need to develop support strategies to promote pregnancy health and parenting satisfaction in partnership with autistic adults. For example, it may be helpful to develop communication tools that can support autistic adults during pregnancy, labor, and birth. We also recommend that future research develop questionnaires to ask autistic adults about their pregnancy and parenting experiences in sensitive ways, so that in the future providers can regularly ask autistic adults about their support needs. Most importantly, it is critical that future research also include more diverse autistic participants in their research, including racial/ethnic and sexual and gender minorities.How will these findings help autistic adults now or in the future?: We hope that this article will help guide future research that strives to better understand how autistic adults experience pregnancy and parenthood. Ultimately, we believe this research can lead to supports and intervention strategies that can improve pregnancy health and parental well-being for autistic adults.

Advancing understanding of the classification of broad autism phenotype and attention-deficit/hyperactivity disorder symptom dimensions within the Hierarchical Taxonomy of Psychopathology.

Research on personality and psychopathology associations has informed the classification of many symptom dimensions within the Hierarchical Taxonomy of Psychopathology (HiTOP). However, classification of symptom dimensions defining autism and attention-deficit/hyperactivity disorder (ADHD) within the HiTOP framework remains unclear in many ways. To address this issue, we examined the joint factor structure of (a) measures assessing characteristics relevant to ADHD and autism and (b) normal range personality traits in a sample of 547 adults recruited from Amazon Mechanical Turk, many of whom reported elevated autism-relevant and ADHD-relevant characteristics. We also examined how factors identified in these analyses correlated with measures of internalizing symptoms and select externalizing traits. Our results indicated that some measures assessing autism-relevant and ADHD-relevant characteristics (e.g. communication issues, hyperactivity/impulsivity) defined a distinct Attention and Communication Difficulties factor, with scores on this factor correlating strongly with internalizing symptom ratings. However, other relevant characteristics such as aloofness may be indicators of existing HiTOP spectra such as detachment. We discuss how these findings inform classification of autism-relevant and ADHD-relevant characteristics within the HiTOP, as well as key future directions for extending the limited research in this area.

Sex Differences in Age of Diagnosis and First Concern among Children with Autism Spectrum Disorder.

OBJECTIVE: Early identification of autism spectrum disorder (ASD) is an essential healthcare priority. Girls may be at risk for late diagnosis, although research is equivocal regarding how sex and other factors relate to ASD identification. The goals of the current investigation were to (1) identify how child sex, cognitive abilities, and demographic factors relate to age of first concern (AOC) and age of diagnosis (AOD), (2) evaluate trends in AOC/AOD over time, and (3) consider whether main effects of sex on AOC/AOD are moderated by cognitive abilities or time. METHOD: Children (N = 365; 20% female; 85.6% identified as White) with ASD participated through the Province of Ontario Neurodevelopmental Disorders (POND) Network. Study records included AOD, date/timing of diagnosis (between 1996 and 2017), age of first parent concern, demographics, and standardized cognitive testing results (24.7% of children had IQ scores below standard scores of 70). RESULTS: Average AOC occurred before 2 years of age whereas average AOD occurred after 5 years of age. Girls did not differ on AOC but had a later AOD than boys. Higher verbal IQ was associated with later AOD more strongly in girls than boys. Regarding time-related changes, average AOC and AOD increased across the study period, more strongly for girls. CONCLUSIONS: Results support that sex is a key factor underlying delays in ASD identification and highlight the urgent need to improve diagnostic practices among girls. Limitations and implications for improving the diagnostic process are discussed.Abbreviations: ASD=autism spectrum disorder; IQ=intelligence quotient; AOC=parental report of age of first concern; AOD=age of diagnosis.

An Exploratory Analysis of Predictors of Youth Suicide-Related Behaviors in Autism Spectrum Disorder: Implications for Prevention Science.

Although autism spectrum disorder (ASD) is associated with significant mental health concerns, little is known about suicidality, particularly among youth. To address this critical gap in the literature, the current study examined the predictive validity of (1) demographics, (2) core autism symptoms, (3) cognitive abilities and adaptive behavior, (4) comorbid psychopathology, and (5) medical problems, for suicide-related behaviors among autistic youth (N = 481; Mage = 11.56 years). As indices of suicide-related behaviors, parents reported on whether the child had ever (1) talked about killing themselves, and (2) engaged in deliberate self-harm or attempted suicide. These two suicide-related outcomes had distinct clinical correlates, including child age, parental education, restricted and repetitive behaviors, IQ and adaptive behavior, affective and conduct problems, and medical concerns.

Longitudinal Cognitive and Behavioral Presentation of Adult Female with Kabuki Syndrome.

BACKGROUND Kabuki syndrome (KS) is a rare disease with an estimated prevalence of approximately 1: 32 000. While the clinical presentation of KS is heterogeneous, manifestations may include: characteristic facial features, postnatal growth retardation, and skeletal abnormalities. With regards to the cognitive profile, most individuals with KS have an Intellectual Disability, but the magnitude of the impairment ranges from mild to severe, and verbal abilities are generally stronger than nonverbal abilities (i.e., visual spatial and visual perception abilities). Given the low incidence of KS, there is limited literature illustrating the longitudinal development of individuals with the condition. This report presents the cognitive and behavioral trajectory of an individual with KS. CASE REPORT The patient in this case report was a 27-year-old female with KS. Her cognitive profile had remained in the average range over time, but consistent with the limited KS literature, her verbal abilities were significantly higher than her nonverbal abilities. Specifically, our patient demonstrated significant deficits in visual motor and visual perceptual skills. With regards to her core language skills, her expressive skills were average, yet her receptive skills were below average. Throughout the majority of her schooling, her academic achievement skills were mildly delayed. Notably, her performance on cognitive and academic assessments remained stable over time. During young adulthood, she developed significant internalizing symptoms, particularly depressive symptoms. CONCLUSIONS This is the first case report to illustrate the presentation of an individual with KS from toddlerhood through young adulthood. The patient's clinical presentation across time was relatively consistent with the KS literature to date; notable patterns of language, motor, cognitive and behavioral deficits illustrate the considerable heterogeneity that exists within the syndrome. This case report, particularly, illustrates the persistence of the cognitive profile over time and also the co-occurring psychiatric symptoms that might emerge.