Time is of the essence: Age at autism diagnosis, sex assigned at birth, and psychopathology.

LAY ABSTRACT: Previous research has shown that girls/women are diagnosed later than boys/men with autism. Individuals who are diagnosed later in life, especially girls/women, have greater anxious and depressive symptoms. Previous research has been limited due to narrow inclusionary criteria for enrollment in studies. The present study uses two samples-one clinic-based, large "real-world" sample and another research-based sample with strict criteria for autism diagnosis-to understand the relationships between diagnostic age, sex assigned at birth, and symptoms of anxiety/depression. In both samples, those who were diagnosed later had greater anxious/depressive symptoms, and anxiety was not predicted by sex. In the clinic-based but not research-based sample, those assigned female at birth were diagnosed later than those assigned male at birth. In the clinic-based sample only, individuals assigned female at birth and who were later diagnosed experienced greater symptoms of anxiety/depression compared to those assigned male who benefited from earlier diagnostic timing. Within the research-based sample, those assigned female at birth had greater depressive symptoms than those assigned male. These findings highlight the importance of timely identification of autism, especially for girls/women who are often diagnosed later. Community-based samples are needed to better understand real-world sex-based and diagnostic age-based disparities in mental health.

Gender, assigned sex at birth, and gender diversity: Windows into diagnostic timing disparities in autism.

LAY ABSTRACT: Later autism diagnosis is associated with risk for mental health problems. Understanding factors related to later autism diagnosis may help reduce mental health risks for autistic people. One characteristic associated with later autism diagnosis is female sex. However, studies often do not distinguish sex assigned at birth and gender identity. Gender diversity may be more common in autistic relative to neurotypical people, and autism is more common in gender-diverse populations. We studied age at autism diagnosis by sex assigned at birth, gender identity, and gender diversity (gender-diverse vs cisgender) status, separately. We studied three separate autistic samples, each of which differed in how they were diagnosed and how they were recruited. The samples included 193 persons (8.0-18.0 years) from a research-recruited academic medical center sample; 1,550 people (1.3-25.4 years) from a clinic-based sample; and 244 people (18.2-30.0 years) from a community-enriched sample. We found significant differences in the clinic-based and community-enriched samples. People assigned female sex at birth were diagnosed with autism significantly later than people assigned male at birth. People of female gender were diagnosed significantly later than people of male gender. Gender-diverse people were diagnosed significantly later than cisgender people. Sex assigned at birth, gender identity, and gender diversity may each show unique relationships with age of autism diagnosis. Differences in how autistic people are diagnosed and recruited are important to consider in studies that examine sex assigned at birth or gender identity. More research into autism diagnosis in adulthood is needed.

Reaching "The Other Half": Teacher Referral Increases Inclusivity in Intervention Research for Neurodivergent School-Age Children.

OBJECTIVE: Researchers employed two recruitment strategies in a school-based comparative effectiveness trial for students with a diagnosis of attention-deficit/hyperactivity disorder (ADHD) or autism. This study assessed the: 1) effectiveness of school-based referrals for identifying students meeting diagnostic criteria and 2) impact of eliminating requirements for existing diagnoses on recruitment, sample characteristics, and intervention response. METHOD: Autistic students and students with ADHD in schools serving underresourced communities were recruited for an executive functioning (EF) intervention trial over 2 years. In Year 1, school staff nominated students with previous diagnoses. In Year 2, school staff nominated students demonstrating EF challenges associated with ADHD or autism; previous diagnosis was not required. Study staff then confirmed diagnoses. RESULTS: More students were included in Year 2 (N = 106) than Year 1 (N = 37). In Year 2, 96% of students referred by school staff met diagnostic criteria for ADHD or autism, 53% of whom were not previously diagnosed. Newly identified students were less likely than previously diagnosed students to be receiving services and, for those with ADHD, were more likely to speak primarily Spanish at home. Previously diagnosed and newly identified students did not differ on other demographic variables or intervention response. Caregivers of previously diagnosed students reported more symptoms than caregivers of newly identified students for both diagnostic groups. Previously diagnosed students with ADHD had more researcher-rated symptoms than newly identified students. CONCLUSIONS: Recruitment for an intervention study using behavior-based referrals from school staff enhanced enrollment without compromising the sample's diagnostic integrity and engaged children who otherwise would have been excluded.

Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.

Leveraging technology to make parent training more accessible: Randomized trial of in-person versus online executive function training for parents of autistic children.

LAY ABSTRACT: This study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12 years of age and did not have intellectual disability. Parents were randomized to the in-person (n = 51) or online (n = 46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child's flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children's executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care.

Parents matter: Parent acceptance of school-based executive functions interventions relates to improved child outcomes.

OBJECTIVES: School-based interventions with parent-training components might improve access among lower-income families to effective help for children with neurodevelopmental disorders. This potential might be realized, however, only if parents perceive the interventions as acceptable and therefore engage with treatment. METHODS: Parents (N = 124) of 3rd-5th grade students diagnosed with Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder rated the acceptability of their child's treatment (one of two culturally responsive behavioral interventions). Parent engagement was measured through attendance at parent training sessions and the extent to which they read a corresponding workbook. RESULTS: Education and income correlated inversely with parent perceptions of treatment acceptability. Acceptability correlated positively with engagement, more strongly among lower-income families. Acceptability had an indirect effect on treatment outcome, mediated by parent engagement. CONCLUSIONS: Treatment providers should focus on strategies to increase parent acceptability, with particular attention to improving access for lower-income families.

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming.

LAY ABSTRACT: Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

Adding the missing voice: How self-report of autistic youth self-report on an executive functioning rating scale compares to parent report and that of youth with attention deficit hyperactivity disorder or neurotypical development.

LAY ABSTRACT: Executive functions are often impaired in autistic people and relate to important outcomes such as mental health, success in school and work, and quality of life. Evaluating executive functions helps autistic people, clinicians, and families identify targets for external supports and skill building. Youth self-report of executive function has not been studied, yet we know that self-report from autistic youth is key to understanding other cognitive/behavioral phenomena in autism such as anxiety, obsessions/compulsions, sensory sensitivities, and repetitive behaviors. We investigated self- and parent-report of executive function problems in 197 autistic youth without intellectual disability (ages 11-18 years), including the magnitude and profiles of executive function problems autistic youth report across subdomains of executive function. We compared autistic self-report with that of 114 youth with attention deficit hyperactivity disorder without intellectual disability and 197 neurotypical youth. We found that autistic youth report significant executive function problems compared to neurotypical youth and a distinctive profile of challenges in comparison to attention deficit hyperactivity disorder youth. Parents and their autistic children diverged regarding the magnitude of the youth's executive function difficulties, but both identify inflexibility as the most impaired executive function subdomain. Autistic youth and their parents were somewhat more concordant in their report of executive function problems than youth with attention deficit hyperactivity disorder and their parents, but only showed moderate concordance at best. These findings elevate the importance of asking autistic youth directly about their executive functioning when engaging them in assessment and intervention, or researching executive functions in autism.

Assessment of Sesame Street online autism resources: Impacts on parental implicit and explicit attitudes toward children with autism.

The current study sought to characterize implicit bias toward children with autism and examine whether viewing educational materials about autism would change attitudes toward children with autism. A website developed by Sesame Street containing information about autism and resources for families was distributed to parents of children with autism (n = 473) and parents of children without autism (n = 707). Pre- and post-test measures of implicit bias toward children with autism; explicit attitudes and knowledge about autism; and parenting confidence, strain, and stigma were completed before and after the website was presented. Results indicated that parents of children with autism showed less implicit bias compared with those of non-autistic children during the pre-test, but the groups did not differ at the post-test. Parents without autistic children and those with more negative explicit attitudes showed a greater reduction in implicit bias from the pre- to the post-test. In addition, for parents of children with autism, a more positive change in explicit attitudes and increased knowledge from the pre- to the post-test was associated with more empowerment at the post-test. Together, our findings suggest that the online educational resources can reduce implicit bias against children with autism and help mitigate some of the psychological issues associated with parenting children with autism.

Preliminary Psychometrics for the Executive Function Challenge Task: A Novel, "Hot" Flexibility, and Planning Task for Youth.

OBJECTIVE: Executive functions (EF) drive health and educational outcomes and therefore are increasingly common treatment targets. Most treatment trials rely on questionnaires to capture meaningful change because ecologically valid, pediatric performance-based EF tasks are lacking. The Executive Function Challenge Task (EFCT) is a standardized, treatment-sensitive, objective measure which assesses flexibility and planning in the context of provocative social interactions, making it a "hot" EF task. METHOD: We investigate the structure, reliability, and validity of the EFCT in youth with autism (Autism Spectrum Disorder; n = 129), or attention deficit hyperactivity disorder with flexibility problems (n = 93), and typically developing (TD; n = 52) youth. RESULTS: The EFCT can be coded reliably, has a two-factor structure (flexibility and planning), and adequate internal consistency and consistency across forms. Unlike a traditional performance-based EF task (verbal fluency), it shows significant correlations with parent-reported EF, indicating ecological validity. EFCT performance distinguishes youth with known EF problems from TD youth and is not significantly related to visual pattern recognition, or social communication/understanding in autistic children. CONCLUSIONS: The EFCT demonstrates adequate reliability and validity and may provide developmentally appropriate, treatment-sensitive, and ecologically valid assessment of "hot" EF in youth. It can be administered in controlled settings by masked administrators.

Increasing autism acceptance: The impact of the Sesame Street "See Amazing in All Children" initiative.

To promote knowledge and acceptance of autism, Sesame Workshop created an online initiative: See Amazing in All Children. This nationwide evaluation of See Amazing assessed whether it increased knowledge and acceptance, promoted community inclusion, reduced parenting strain, and enhanced parenting competence. Survey responses were collected online from parents of children (age ⩽ 6) with and without autism before (N = 1010), 1 week after (N = 510), and, for parents of autistic children, 1 month after (N = 182) they viewed the See Amazing materials. Following exposure, parents of non-autistic children showed small but significant increases in knowledge of autism and, like parents of autistic children, greater acceptance of autistic children. Parents of autistic children reported less strain, increased parenting competence, and more hope about involving their child in their community. That the See Amazing materials invoked positive changes in the general parent community and in parents of autistic children suggests that See Amazing materials have the potential to be an effective resource to increase acceptance and community inclusion, although limitations of self-selection, dropout rate, and lack of control group constrain interpretation. Implications include support for targeting acceptance as a step beyond awareness campaigns, though actual behavior change is a subject for future research.

Autism and social disconnection in interpersonal rocking.

Individuals with autism spectrum disorders (ASDs) have significant visuomotor processing deficits, atypical motoric behavior, and often substantial problems connecting socially. We suggest that the perceptual, attentional, and adaptive timing deficiencies associated with autism might directly impact the ability to become a socially connected unit with others. Using a rocking chair paradigm previously employed with typical adults, we demonstrate that typically-developing (TD) children exhibit spontaneous social rocking with their caregivers. In contrast, children diagnosed with ASD do not demonstrate a tendency to rock in a symmetrical state with their parents. We argue that the movement of our bodies is one of the fundamental ways by which we connect with our environment and, especially, ground ourselves in social environments. Deficiencies in perceiving and responding to the rhythms of the world may have serious consequences for the ability to become adequately embedded in a social context.

Screening for autism in older and younger toddlers with the Modified Checklist for Autism in Toddlers.

The Modified Checklist for Autism in Toddlers (M-CHAT) was used to screen younger (16-23 months) versus older (24-30 months) high- and low-risk toddlers. Refusal rates for follow-up interview showed no group differences, but parents of younger/low-risk children were more likely to refuse evaluation than parents of high-risk children. PPP for an ASD diagnosis was: younger/high-risk 0.79, older/high-risk 0.74, younger/low-risk 0.28, and older/low-risk 0.61, with PPP differing by age within the low-risk group. Most of the children in all groups, however, were diagnosed with a developmental disorder. Symptom severity generally did not differ among groups. Cognitive and adaptive measures showed minimal group differences. Therefore, older and younger toddlers had similar symptomatology and developmental delays; PPP for ASD is better at 24 than 18 months for low-risk children; however, these children are still highly likely to show a developmental disorder. Clinical decision making should balance early identification against the lower specificity of M-CHAT screening for the younger/low-risk group.

The modified checklist for autism in toddlers: a follow-up study investigating the early detection of autism spectrum disorders.

Autism spectrum disorders (ASD) often go undetected in toddlers. The Modified Checklist for Autism in Toddlers (M-CHAT) was used to screen 3,793 children aged 16-30 months from low- and high-risk sources; screen positive cases were diagnostically evaluated. Rescreening was performed on 1,416 children aged 42-54 months. Time 1 Positive Predictive Value (PPV) was .36 for the initial screening and .74 for the screening plus follow-up telephone interview; values were similar for Time2 PPV. When separating referral sources, PPV was low for the low-risk sample but acceptable with the followup telephone interview. Children with ASD from the low-risk and high-risk samples were highly similar. Results indicate that the M-CHAT continues to be a promising instrument for the early detection of ASD.

Diagnostic stability in very young children with autism spectrum disorders.

Autism Spectrum Disorders (ASD) diagnosis in very young children may be delayed due to doubts about validity. In this study, 77 children received a diagnostic and developmental evaluation between 16 and 35 months and also between 42 and 82 months. Diagnoses based on clinical judgment, Childhood Autism Rating Scale, and the Autism Diagnostic Observation Schedule were stable over time. Diagnoses made using the Autism Diagnostic Interview were slightly less stable. According to clinical judgment, 15 children (19%) moved off the autism spectrum by the second evaluation; none moved onto the spectrum. Results indicate diagnostic stability at acceptable levels for diagnoses made at age 2. Movement off the spectrum may reflect true improvement based on maturation, intervention, or over-diagnosis at age 2.

Perceiving facial and vocal expressions of emotion in individuals with Williams syndrome.

People with Williams syndrome are extremely sociable, empathic, and expressive in communication. Some researchers suggest they may be especially sensitive to perceiving emotional expressions. We administered the Faces and Paralanguage subtests of the Diagnostic Analysis of Nonverbal Accuracy Scale (DANVA2), a standardized measure of emotion recognition for basic emotions to three groups: adolescents and adults with Williams syndrome, age and IQ-matched participants with learning/intellectual disability, and age-matched nonimpaired controls. The Williams syndrome and learning/intellectual disability groups performed significantly worse than the typically developing controls on both subtests, especially on negative emotions. Error analysis indicated the same general pattern of performance across versions and subtests of the DANVA2 for all groups. These findings suggest that emotion recognition is not spared in Williams syndrome.

Social-perceptual abilities in adolescents and adults with Williams syndrome.

People with Williams syndrome (WMS) have a unique social phenotype characterised by unusually strong interest in other people and an engaging and empathic personality. Two experiments were designed to test whether this phenotype is associated with relatively spared abilities to decode mental-state information from nonverbal cues. The first experiment involved a modified version of the revised Eyes Test. The second experiment probed the ability to label emotions from brief dynamic facial displays. Adolescents and adults with WMS were compared to age-, IQ-, and language-matched participants with learning/intellectual disabilities, and age-matched normal controls. In both experiments the WMS group performed at a significantly lower level than the normal controls, and no different from the well-matched comparison-group with intellectual disabilities. These findings, contradicting earlier reports in the literature, argue against the view that in WMS social-perceptual abilities are relatively spared and can explain the social profile associated with this neurodevelopmental disorder.

The neural basis of hyperlexic reading: an FMRI case study.

Children with autism spectrum disorders in very rare cases display surprisingly advanced "hyperlexic" reading skills. Using functional magnetic resonance imaging (fMRI), we studied the neural basis of this precocious reading ability in a 9-year-old hyperlexic boy who reads 6 years in advance of his age. During covert reading, he demonstrated greater activity in the left inferior frontal and superior temporal cortices than both chronological age- and reading age-matched controls. Activity in the right inferior temporal sulcus was greater when compared to reading age-matched controls. These findings suggest that precocious reading is brought about by simultaneously drawing on both left hemisphere phonological and right hemisphere visual systems, reconciling the two prevailing, but seemingly contradictory, single hemisphere theories of hyperlexia. Hyperlexic reading is therefore associated with hyperactivation of the left superior temporal cortex, much in the same way as developmental dyslexia is associated with hypoactivation of this area.