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1.
Autism ; : 13623613241252312, 2024 May 09.
Article in English | MEDLINE | ID: mdl-38725312

ABSTRACT

LAY ABSTRACT: The American Academy of Pediatrics recommends universal screening to identify children at higher likelihood for autism at 18- and 24-month well-child visits. There are many children, however, that are missed during this toddler age who do not get diagnosed until much later in development, delaying access to autism-specific interventions. Currently, brief measures for universal autism screening for school-age children, however, are lacking. In this project, we adapted a commonly used autism screener for toddlers, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F), to be used for school-age children. This measure, called the M-CHAT-School (M-CHAT-S), is a parent- and teacher-report questionnaire to be used to screen for autism in school-age children aged 4 to 8 years of age. M-CHAT-S was developed through feedback from autism experts, as well as interviews with parents and teachers to provide input on the items. Two versions of M-CHAT-S were developed, one for verbally fluent and one for minimally verbal school-age children. M-CHAT-S is a brief measure, with updated items to reflect changes in the way experts think and talk about autism, making it a useful measure to use for autism screening in elementary aged children. The next steps include further testing to ensure that M-CHAT-S performs well in identifying children with increased likelihood of autism, after which it will be made available to parents, educators, and other professionals.

2.
J Dev Behav Pediatr ; 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38564788

ABSTRACT

OBJECTIVE: The aim of this study was to evaluate the added value of primary care clinician (PCC)-indicated concern during primary care universal standardized screening in early identification of autism. METHODS: Toddlers were screened for autism during primary care checkups (n = 7,039, aged 14.24-22.43 months) in 2 studies. Parents completed the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up. For each participant, PCCs indicated whether they had autism concerns (optional in 1 study-before or after viewing screening results, required before viewing screen results in the other). Children at high likelihood for autism from screen result and/or PCC concern (n = 615) were invited for a diagnostic evaluation; 283 children attended the evaluation. RESULTS: Rates of PCC-indicated autism concerns were similar whether PCCs were required or encouraged to indicate concerns. High likelihood of autism indication on both screen and PCC concern resulted in the highest positive predictive value for autism and positive predictive value for any developmental disorder, as well as the highest evaluation attendance, with no significant difference between the positive screen-only and PCC concern-only groups. Although the frequency of PCC-indicated autism concern did not differ significantly based on the child's cognitive level, PCCs were more likely to identify children with more obvious autism characteristics compared with more subtle autism characteristics as having autism. CONCLUSION: The findings support the recommendation of the American Academy of Pediatrics that both screening and surveillance for autism be incorporated into well-child visits. High likelihood of autism on either screen or PCC concern should trigger a referral for an evaluation.

3.
Autism Res ; 17(3): 568-583, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38216522

ABSTRACT

Clinicians form initial impressions about a child's diagnosis based on behavioral features, but research has not yet identified specific behaviors to guide initial diagnostic impressions. Participants were toddlers (N = 55, mean age 22.9 months) from a multi-site early detection study, referred for concern for ASD due to screening or parent/provider concern. Within 5 min of meeting a child, clinicians noted ASD or non-ASD impression, confidence in impression, and behaviors that informed their impression. These clinicians also determined final diagnoses for each child. When a child's final diagnosis was ASD (n = 35), senior clinicians formed an initial impression of ASD in 22 cases (63%) but missed 13 cases (37%). When final diagnosis was non-ASD (n = 20), senior clinicians made an initial impression of non-ASD in all cases (100%). Results were similar among junior clinicians. Senior and junior clinicians used the same behaviors to form accurate impressions of ASD and non-ASD: social reciprocity, nonverbal communication, and eye contact. Senior clinicians additionally used focus of attention when forming accurate impressions of ASD and non-ASD; junior clinicians used this behavior only when forming accurate non-ASD impressions. Clinicians' initial impressions of ASD are very likely to be consistent with final diagnoses, but initial impressions of non-ASD need follow-up. Toddlers who show all four atypical behaviors (social reciprocity, nonverbal communication, eye contact, and focus of attention) might receive expedited ASD diagnoses. However, presence of apparently typical behaviors should not rule out ASD; for some children a longer evaluation is necessary to allow for more opportunities to observe subtle social behavior.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Humans , Child, Preschool , Child , Infant , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Child Development Disorders, Pervasive/diagnosis , Social Behavior , Mental Processes
4.
Autism ; 28(1): 229-238, 2024 Jan.
Article in English | MEDLINE | ID: mdl-36627839

ABSTRACT

LAY ABSTRACT: To inform improvement of care and public policy, quality research is required. Conducting research projects requires skills and infrastructure. Research capacity building is the process by which individuals and organizations develop greater ability to conduct useful research. However, in the scientific community, research quality and productivity measures are often focused on long-term products, such as publications or grants awarded. Those measures are not helpful when measuring initial stages of research, a common situation in low- and middle-income countries. We used a six-principle framework designed by J. Cooke to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles, and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the Years 2018, 2020, and 2022. The principles with the highest Achieved rates were "Linkages, collaborations, and partnerships" (90%), and "Infrastructure" (Principle 6, 70%). Cooke's research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Autistic Disorder/diagnosis , Capacity Building , Mexico
5.
Autism Res ; 16(6): 1138-1144, 2023 06.
Article in English | MEDLINE | ID: mdl-37084079

ABSTRACT

Reducing the age of first autism diagnosis facilitates access to critical early intervention services. A current "waitlist crisis" for autism diagnostic evaluation thus demands that we consider novel use of available clinical resources. Previous work has found that expert autism clinicians can identify autism in young children with high specificity after only a brief observation; rapid identification by non-experts remains untested. In the current study, 252 children ages 12-53 months presented for a comprehensive autism diagnostic evaluation. We found that junior clinicians in training to become autism specialists (n = 29) accurately determined whether or not a young child would be diagnosed with autism in the first five minutes of the clinic visit in 75% of cases. Specificity of brief observations was high (0.92), suggesting that brief observations may be an effective tool for triaging young children toward autism-specific interventions. In contrast, the lower negative predictive value (0.71) of brief observations, suggest that they should not be used to rule out autism. When trainees expressed more confidence in their initial impression, their impression was more likely to match the final diagnosis. These findings add to a body of literature showing that clinical observations of suspected autism should be taken seriously, but lack of clinician concern should not be used to rule out autism or overrule other indicators of likely autism, such as parent concern or a positive screening result.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Humans , Child, Preschool , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Predictive Value of Tests , Parents , Early Intervention, Educational , Sensitivity and Specificity
6.
J Pediatr ; 262: 113343, 2023 11.
Article in English | MEDLINE | ID: mdl-36736890

ABSTRACT

OBJECTIVE: To examine the classification rates and screening properties, including sensitivity and specificity, of the web-based Modified Checklist for Autism in Toddler, Revised with Follow-Up (M-CHAT-R/F) compared with paper-phone administration, and to determine the extent to which electronic M-CHAT-R/F streamlines screening, increases screening fidelity, increases diagnostic evaluation participation, and decreases waiting time from screening to evaluation compared with paper-phone modality. STUDY DESIGN: Primary-care practices in urban and suburban settings administered either the web-based or paper-phone M-CHAT-R/F using a prospective nonrandomized control design. Toddlers (n = 17 900) were screened between 2009 and 2016 at routine well-child check-ups. Toddlers who screened at risk on the M-CHAT-R/F were invited to complete diagnostic evaluations; 176 children were diagnosed with autism. The χ2, Fisher exact, and t-tests, as well as regression and screening properties, were used to compare outcome distributions, screening properties, and implementation by modality. RESULTS: Classification rates of the initial M-CHAT-R into low, medium, and high risk were significantly different across modalities with very small effect sizes. Sensitivity and specificity were high across both modalities. For children in the medium-risk range, the web-based modality had a greater rate of predicting risk for autism after Follow-Up compared with the paper-phone modality, and the web eliminated delay between initial screen and Follow-Up. The web-based modality showed increased screening fidelity, no data loss, and similar rates of evaluation attendance and time to evaluation from Follow-Up administration. CONCLUSIONS: The web-based M-CHAT-R/F is a valid tool for universal autism screening. Systems-level decisions should balance the increased feasibility of the electronic administration with the increase in Follow-Up accuracy provided by skilled clinician interview.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Child, Preschool , Infant , Autistic Disorder/diagnosis , Mass Screening , Checklist , Prospective Studies , Sensitivity and Specificity , Autism Spectrum Disorder/diagnosis
7.
Autism ; 27(7): 2112-2123, 2023 10.
Article in English | MEDLINE | ID: mdl-36786236

ABSTRACT

LAY ABSTRACT: This study examined a widely used autism screening tool, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up to identify differences in screening for autism between toddler males and females. Examining sex differences in screening for autism in toddlerhood is important as it determines who will be referred for evaluations and receive diagnoses, which is critical for access to autism-specific early intervention. This study found that females were less likely to screen positive and be invited for evaluations compared with males. Females at high likelihood for autism were less likely to be diagnosed with autism, which decreases confidence in the screener's results. Importantly, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identified both males and females with autism. Future research should examine ways to improve accuracy in screening results for females.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Male , Child, Preschool , Female , Infant , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Follow-Up Studies , Checklist/methods , Sex Characteristics , Mass Screening/methods
8.
JAMA Pediatr ; 177(4): 373-383, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36804771

ABSTRACT

Importance: The Modified Checklist for Autism in Toddlers (M-CHAT) and the M-CHAT, Revised With Follow-up (M-CHAT-R/F)-henceforth referred to as M-CHAT(-R/F)-are the most commonly used toddler screeners for autism spectrum disorder (ASD). Their use often differs from that in the original validation studies, resulting in a range of estimates of sensitivity and specificity. Also, given the variability in reports of the clinical utility of the M-CHAT(-R/F), researchers and practitioners lack guidance to inform autism screening protocols. Objective: To synthesize variability in sensitivity and specificity of M-CHAT(-R/F) across multiple factors, including procedures for identifying missed cases, likelihood level, screening age, and single compared with repeated screenings. Data Sources: A literature search was conducted with PubMed, Web of Science, and Scopus to identify studies published between January 1, 2001, and August 31, 2022. Study Selection: Articles were included if the studies used the M-CHAT(-R/F) (ie, original or revised version) to identify new ASD cases, were published in English-language peer-reviewed journals, included at least 10 ASD cases, reported procedures for false-negative case identification, screened children by 48 months, and included information (or had information provided by authors when contacted) needed to conduct the meta-analysis. Data Extraction and Synthesis: The systematic review and meta-analysis was conducted within the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline. The Quality Assessment of Diagnostic Accuracy Studies-2 tool evaluated bias in sample selection. Data extraction and quality assessment were performed by 2 authors independently. The overall diagnostic accuracy of the M-CHAT(-R/F) was assessed with the hierarchic summary receiver operating characteristic (HSROC) model. Main Outcomes and Measures: Sensitivity, specificity, diagnostic odds ratios, and HSROC curves of M-CHAT(-R/F). Results: The review included 50 studies with 51 samples. The pooled sensitivity of M-CHAT(-R/F) was 0.83 (95% CI, 0.77-0.88), and the pooled specificity was 0.94 (95% CI, 0.89-0.97). Heterogeneity analyses revealed greater diagnostic accuracy for low- vs high-likelihood samples, a concurrent vs prospective case confirmation strategy, a large vs small sample size, use of M-CHAT(-R/F) Follow-up, and non-English vs English only. Conclusions and Relevance: Overall, results of this study suggest the utility of the M-CHAT(-R/F) as an ASD screener. The wide variability in psychometric properties of M-CHAT(-R/F) highlights differences in screener use that should be considered in research and practice.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Child, Preschool , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Checklist , Sensitivity and Specificity , ROC Curve
9.
Autism ; 27(6): 1601-1615, 2023 08.
Article in English | MEDLINE | ID: mdl-36519775

ABSTRACT

LAY ABSTRACT: Early intervention can help children learn language and improve social communication. However, many barriers, including the expense of services and an insufficient number of providers, prohibit families from accessing services when their children are young. We developed a comprehensive online program for caregivers of autistic children. The program, Online Parent Training in Early Behavioral Intervention (OPT-In-Early), uses text and video demonstrations to teach caregivers effective methods for improving their children's language, social, and adaptive skills (e.g. using utensils, toilet training), and reducing their children's disruptive behavior. Sixty-three parents from three states participated in the study. Half of the parents received access to the OPT-In-Early program. After 4 months, parents who had access to the OPT-In-Early program learned more effective intervention strategies, and started using these strategies during interactions with their children, than parents who did not receive access to the program. Parent participation in OPT-In-Early did not significantly influence children's social communication compared to children whose parents did not have access to OPT-In-Early. A longer duration of parents using learned intervention skills with their children may be needed for children's social communication skills to improve.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Humans , Caregivers , Parents/education , Communication
10.
J Child Psychol Psychiatry ; 64(1): 50-58, 2023 01.
Article in English | MEDLINE | ID: mdl-35817758

ABSTRACT

OBJECTIVE: It has been suggested that the sequelae of trauma are under-recognized in youth on the autism spectrum. We aimed to generate expert consensus regarding important trauma indicators, including but not limited to traumatic stress symptoms, in autistic youth. METHODS: We recruited 72 experts in autism and/or childhood trauma. Via a 2-round Delphi survey, experts commented on and rated the importance of 48 potential indicators, drawn from PTSD criteria and a broader literature on traumatic sequelae in autism. A revised list of 51 indicators, 18 clinical guidelines developed from expert comments, and summaries of expert qualifications and ratings from Round 1 were submitted to a second round (n = 66; 92% retention) of expert review and rating. RESULTS: Twenty-two indicators reached consensus (>75% round 2 endorsement). Many, but not all, reflected PTSD criteria, including intrusions (e.g., trauma re-enactments in perseverative play/speech), avoidance of trauma-reminders, and negative alterations in mood/cognition (e.g., diminished interest in activities) and in arousal/reactivity (e.g., exaggerated startle). Experts also identified increased reliance on others, adaptive and language regressions, self-injurious behavior, and non-suicidal self-injury as important indicators. Consensus guidelines emphasized the need for tailored measures, developmentally informed criteria, and multiple informants to increase diagnostic accuracy. CONCLUSIONS: Expert consensus emphasizes and informs a need for tailored diagnostic guidelines and measures to more sensitively assess traumatic reactions in autistic youth.


Subject(s)
Autistic Disorder , Adolescent , Humans , Delphi Technique , Consensus
11.
J Autism Dev Disord ; 53(4): 1618-1628, 2023 Apr.
Article in English | MEDLINE | ID: mdl-34855051

ABSTRACT

There is increasing evidence supporting the effectiveness of the Early Start Denver Model (ESDM) for children on the autism spectrum. However, substantial variability in response to the ESDM has been reported across participants. We examined the plausible yet untested hypothesis that variations in the fidelity level of therapists delivering the intervention contribute to variability in children's response to the ESDM. Videotaped sessions (n = 40) of toddlers on the autism spectrum who received the ESDM from trained therapists were coded to obtain measures of therapist fidelity and children's learning in response to the therapists' instruction. Variations in overall fidelity, along with variations in most items included in the ESDM fidelity checklist, contributed to the children's learning response during the sessions.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Humans , Child , Child, Preschool , Autistic Disorder/therapy , Autism Spectrum Disorder/therapy , Early Intervention, Educational , Child Development Disorders, Pervasive/therapy , Learning
12.
Autism ; 27(1): 244-252, 2023 01.
Article in English | MEDLINE | ID: mdl-35502485

ABSTRACT

LAY ABSTRACT: Research on neurotypical children with imaginary friends has found that those with imaginary friends have better social skills and are more able to think about how other people's minds work compared to children without imaginary friends. Research shows that some autistic children also create imaginary friends. This article is the first to look at whether or not autistic children with imaginary friends have stronger social skills and an improved ability to think about others' minds than those without imaginary friends. We asked parents to report about their children aged 5 to 12. Finding almost half reported their child had an imaginary friend, a much larger number than previous research with younger children. Our findings also suggested that autistic children with imaginary friends were better able to understand others' minds and had stronger social skills than their peers without imaginary friends. The children's language ability did not influence this. The findings of this study add to the evidence that with respect to the creation imaginary friends and their potential benefits, the play profiles of autistic children are similar to the general population. It also provides more evidence that the understanding of others' minds is not all or nothing in autism and gives reason for researchers to investigate whether the causes of these differences are the same or different for autistic children.


Subject(s)
Autism Spectrum Disorder , Friends , Humans , Child , Imagination , Social Skills , Peer Group
13.
J Autism Dev Disord ; 2022 Oct 31.
Article in English | MEDLINE | ID: mdl-36316523

ABSTRACT

Racial disparities exist in autism diagnosis, and yet, the development of most diagnostic tools has not explicitly examined measurement equity between racial and ethnic groups. We examined the validity of the Toddler Autism Symptom Inventory (TASI), a semi-structured interview developed for diagnosis of toddlers, in non-Hispanic Black/African American and non-Hispanic White children. After controlling for group differences in socio-economic status, no differences in diagnosis, age at diagnosis, mean developmental level, or autism severity were found. TASI ROC curves for both groups, in the overall sample, and in samples stratified by SES, showed high AUC values. Validity of two cutoff scores was acceptable. Lack of significant differences in TASI score or responses to individual items suggests similar symptomatology. These results provide early support for the use of the TASI in diagnostic evaluations of Black and White children.

14.
Autism Res ; 15(12): 2216-2222, 2022 12.
Article in English | MEDLINE | ID: mdl-36254366

ABSTRACT

Formal autism diagnosis from a specialist trained in autism assessment is customary prior to a child accessing early, intensive autism-specific services. However, long wait lists for diagnostic evaluations and limited specialty workforce have created substantial delays. Additionally, lengthy multidisciplinary evaluations are costly to insurers, inconvenient to families, and disproportionally impact under-resourced families. Diagnostic delays can impede access to intervention services. These barriers, combined with evidence regarding the importance of receiving early, autism-specific treatment, demand new approaches enabling access to autism specific services before comprehensive evaluation. Pediatric primary care providers (PCPs) are often the only health care professionals with whom a family interacts during early childhood and can play a crucial role in helping children with autism symptoms access services. Many strategies for autism diagnosis in primary care are being developed and tested; however, they have yet to be broadly adopted by PCPs, primarily due to critical implementation barriers in primary care settings. There is also not enough evidence on the accuracy of PCPs' diagnostic impressions without extensive specialty support, resulting in PCP hesitancy in diagnosing ASD, as well as family and service provider hesitancy in accepting a PCP autism diagnosis. In this commentary, we explore the acute need for shortening waitlists for autism evaluations through a tiered diagnostic approach, in which PCPs can rule in or rule out autism in children, for whom diagnosis is clear, and refer more complex cases for specialist evaluations, and explore implementation challenges to this approach.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Humans , Child, Preschool , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Primary Health Care
15.
Front Psychiatry ; 13: 825008, 2022.
Article in English | MEDLINE | ID: mdl-35911211

ABSTRACT

Background: Coping can moderate the relationship between trauma exposure and trauma symptoms. There are many conceptualisations of coping in the general population, but limited research has considered how autistic individuals cope, despite their above-average rates of traumatic exposure. Objectives: To describe the range of coping strategies autistic individuals use following traumatic events. Methods: Fourteen autistic adults and 15 caregivers of autistic individuals, recruited via stratified purposive sampling, completed semi-structured interviews. Participants were asked to describe how they/their child attempted to cope with events they perceived as traumatic. Using an existing theoretical framework and reflexive thematic analysis, coping strategies were identified, described, and organized into themes. Results: Coping strategies used by autistic individuals could be organized into 3 main themes: (1) Engaging with Trauma, (2) Disengaging from Trauma, and (3) Self-Regulatory Coping. After the three main themes were developed, a fourth integrative theme, Diagnostic Overshadowing, was created to capture participants' reports of the overlap or confusion between coping and autism-related behaviors. Conclusions: Autistic individuals use many strategies to cope with trauma, many of which are traditionally recognized as coping, but some of which may be less easily recognized given their overlap with autism-related behaviors. Findings highlight considerations for conceptualizing coping in autism, including factors influencing how individuals cope with trauma, and how aspects of autism may shape or overlap with coping behavior. Research building on these findings may inform a more nuanced understanding of how autistic people respond to adversity, and how to support coping strategies that promote recovery from trauma.

16.
Brain Cogn ; 162: 105902, 2022 10.
Article in English | MEDLINE | ID: mdl-36007350

ABSTRACT

Empathy is a component of social cognition that allows us to understand, perceive, experience, and respond to the emotional state of others. In this study, we seek to build on previous research that suggests that sex and hormone levels may impact white matter microstructure. These white matter microstructural differences may influence social cognition. We examine the fractional anisotropy (FA) of white matter pathways associated with the complex human process of empathy in healthy young adult females during the self-reported luteal phase of their menstrual cycle. We used tract-based spatial statistics to perform statistical comparisons of FA and conducted multiple linear regression analysis to examine the strength of association between white matter FA and scores on the Empathy Quotient (EQ), a self-report questionnaire in which individuals report how much they agree or disagree with 60 statements pertaining to their empathic tendencies. Results identified a significant negative relationship between EQ scores and FA within five clusters of white matter: in the left forceps minor/body of the corpus callosum, left corticospinal tract, intraparietal sulcus/primary somatosensory cortex, superior longitudinal fasciculus, and right inferior fronto-occipital fasciculus/forceps minor. These consistent findings across clusters suggest that lower self-reported empathy is related to higher FA across healthy young females in specific white matter regions during the menstrual luteal phase. Future research should seek to examine if self-reported empathy varies across the menstrual cycle, using blood samples to confirm cycle phase and hormone levels.


Subject(s)
White Matter , Anisotropy , Brain , Diffusion Tensor Imaging , Empathy , Female , Hormones , Humans , White Matter/diagnostic imaging , Young Adult
17.
Autism Res ; 15(4): 592-601, 2022 04.
Article in English | MEDLINE | ID: mdl-35199493

ABSTRACT

Most published autism research, and the funding that supports it, remains focused on basic and clinical science. However, the public health impact of autism drives a compelling argument for utilizing a public health approach to autism research. Fundamental to the public health perspective is a focus on health determinants to improve quality of life and to reduce the potential for adverse outcomes across the general population, including in vulnerable subgroups. While the public health research process can be conceptualized as a linear, 3-stage path consisting of discovery - testing - translation/dissemination/implementation, in this paper we propose an integrated, cyclical research framework to advance autism public health objectives in a more comprehensive manner. This involves discovery of primary, secondary and tertiary determinants of health in autism; and use of this evidence base to develop and test detection, intervention, and dissemination strategies and the means to implement them in 'real world' settings. The proposed framework serves to facilitate identification of knowledge gaps, translational barriers, and shortfalls in implementation; guides an iterative research cycle; facilitates purposeful integration of stakeholders and interdisciplinary researchers; and may yield more efficient achievement of improved health and well-being among persons on the autism spectrum at the population-level. LAY SUMMARY: Scientists need better ways to identify and address gaps in autism research, conduct research with stakeholders, and use findings to improve the lives of autistic people. We recommend an approach, based in public health science, to guide research in ways that might impact lives more quickly.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autistic Disorder/diagnosis , Humans , Public Health , Quality of Life
18.
Autism ; 26(8): 1987-1998, 2022 11.
Article in English | MEDLINE | ID: mdl-35068176

ABSTRACT

LAY ABSTRACT: The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.


Subject(s)
Adverse Childhood Experiences , Autism Spectrum Disorder , Autistic Disorder , Adult , Child , Humans , Autistic Disorder/psychology , Caregivers/psychology , Autism Spectrum Disorder/psychology , Qualitative Research
19.
Clin Neuropsychol ; 36(5): 1028-1048, 2022 07.
Article in English | MEDLINE | ID: mdl-34762009

ABSTRACT

Objective: Autism spectrum disorder (ASD) in very young children with significant cognitive impairment is difficult to diagnose, depriving them of the earliest opportunities for autism-specific intervention. This study delineated specific symptoms in this group, compared to symptoms in children with Global Developmental Delay (GDD) and in ASD with milder developmental delays.Method: Autism Diagnostic Observation Schedule, 2nd Edition, Toddler Module revealed symptoms in three groups of toddlers, with mean ages of 17-20 months: (1) ASD and cognitive/language functioning below the 12-month level (ASD-MA < 12 mos; n = 28), (2) GDD (n = 27), and (3) ASD and cognitive/language functioning at or above the 12-month level (ASD-MA ≥ 12 mos; n = 29). Logistic regression models were fit to control for developmental level. Results: Items in all domains (social interaction, communication, repetitive movements) discriminated ASD-MA < 12 mos from GDD. The two ASD groups, matched for age but differing on developmental level, showed strikingly similar ASD symptomatology. Conclusion: ADOS-2 symptoms differentiated ASD-MA < 12 mos from GDD, after controlling for cognitive impairment. Symptoms in the two ASD groups were minimally related to developmental level. The ADOS-2 Toddler Module successfully captured ASD symptomatology even in children whose developmental level was below the recommended ADOS-2 cutoff of 12 months, which may increase their access to early ASD-specific intervention.


Subject(s)
Autism Spectrum Disorder , Autism Spectrum Disorder/complications , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Child, Preschool , Cognition , Humans , Infant , Intelligence , Logistic Models , Neuropsychological Tests
20.
Brain Sci ; 13(1)2022 Dec 22.
Article in English | MEDLINE | ID: mdl-36672000

ABSTRACT

Early detection of autism provides access to early intervention and subsequently fewer lifelong challenges. However, disparities in screening have been associated with socioeconomic status (SES) and race, and disparities in surveillance have been associated with clinician knowledge and beliefs about autism identification. The present study examines associations between demographic variables and clinician beliefs, and agreement between screening results and clinician surveillance. Surveillance included activities used by the primary care clinicians (PCCs) to assess risk for autism. PCCs reported their beliefs about autism screening and identification, their sex, race, years in practice, and racial distribution of their patient population. Children's demographic information was also collected. PCCs identified children as having, or not having, an increased likelihood of autism, and parents of children completed an autism screener. Agreement between screening and surveillance results were examined across PCC, practice, and child demographics. Higher confidence in autism knowledge and screening resources, female PCC sex, and majority White practice patient demographics all predicted agreement between screening and surveillance. Female child sex and higher maternal education also predicted agreement between screening and surveillance. These findings highlight the importance of PCC screening beliefs and child and PCC demographics on the autism identification process.

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