Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care

Weitlauf, Amy; Miceli, Alexandra; Vehorn, Alison; Dada, Yewande; Pinnock, Theodora; Harris, Joyce; Hine, Jeffrey F.; Warren, Zachary

doi:10.1007/s10803-022-05861-z

Cited by 15 publications

(3 citation statements)

References 45 publications

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“…With respect to genetic testing specifically, there are several factors, pertaining to both the patient and the healthcare professional, that impede a referral to genetic services, 48 . Thus, society guidelines failing to promote the highest yield test as the first-tier test may lead to additional visits as part of the diagnostic odyssey, potentially widening existing health disparities for individuals with NDDs 49,50 .…”

Section: Discussion: Negative Impact From Lack Of Contemporary Guidel...mentioning

confidence: 99%

Survey of the Landscape of Society Practice Guidelines for Genetic Testing of Neurodevelopmental Disorders

Srivastava,

Cole,

Cohen

et al. 2024

Preprint

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Genetic testing of patients with neurodevelopmental disabilities (NDDs) is critical for diagnosis, medical management, and access to precision therapies. Because genetic testing approaches evolve rapidly, professional society practice guidelines serve an essential role in guiding clinical care; however, several challenges exist regarding the creation and equitable implementation of these guidelines. In this scoping review, we assessed the current state of United States professional societies’ guidelines pertaining to genetic testing for unexplained global developmental delay, intellectual disability, autism spectrum disorder, and cerebral palsy. We describe several identified shortcomings and argue the need for a unified, frequently-updated and easily-accessible cross-specialty society guideline.

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Section: Discussion: Negative Impact From Lack Of Contemporary Guidel...mentioning

confidence: 99%

Survey of the Landscape of Society Practice Guidelines for Genetic Testing of Neurodevelopmental Disorders

Srivastava,

Cole,

Cohen

et al. 2024

Preprint

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“…Per DisCrit (Annamma et al, 2013), these patterns might be explained by a model in which barriers to services, sense of community, and autism traits reinforce one another. Minoritized autistic individuals and their families face systemic barriers to accessing services (Weitlauf et al, 2024), including inadequate cultural responsivity in service delivery that can exacerbate lack of trust and rapport with professionals (Pham & Charles, 2023). Consequently, these interactions might have a dual effect of both failing to provide access to services to support individuals in areas where they may want support and negatively impacting sense of community.…”

Section: Discussionmentioning

confidence: 99%

Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Girolamo,

Escobedo,

Ghali

et al. 2024

Preprint

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Background: Racially and ethnically minoritized autistic individuals face intersectional disparities in access to services and research representation. Prior work tends to overlook individual preferences, lived expertise, and the of language skills in services. To address this gap, this community-based participatory study examines the presence and correlates of services in minoritized autistic adolescents and adults varying in language skills. Method: Participants (N = 73, ages 13-30, >50% with language scores ≤ -1.25 SD and ~30% with NVIQ < 70 to 84) completed a behavioral assessment protocol. Participants and caregivers completed questionnaires. Descriptive and regression analyses evaluated patterns and predictors of number of services received, unmet needs, and barriers. Results: Participants received multiple services yet had multiple unmet service needs and barriers. Effects of individual differences and social-ecological variables on services received, unmet needs, and barriers varied in presence and magnitude when using a categorical versus continuous approach to individual differences. Implications: While the number of services received and unmet needs were similar to prior work, examination of individual services, unmet needs, and barriers suggested differences. Effects point to nuance in experiences during the transition to adulthood and motivate use of participatory approaches to build the evidence base informing practice and advocacy.

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“…However, we note that Paisley provides the opportunity for providers to interact directly with their patients in the presence of their guardians, engaging in structured activities to elicit autism symptoms. Given that many parents and providers both identify a need for pathways of enhanced communication and shared decision‐making as part of the screening process, (Locke et al, 2020; Weitlauf et al, 2023) and that providers report a need for increased competence and capacity for serving these families (Hamp et al, 2023), tools such as Paisley may offer clinical benefit in the form of the opportunity for parents to observe and comment on their children's behavior while talking with their providers.…”

Section: Discussionmentioning

confidence: 99%

Paisley: Preliminary validation of a novel app‐based e‐Screener for ASD in children 18–36 months

Honaker,

Weitlauf,

Swanson

et al. 2023

Autism Research

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The purpose of this study was to assess the validity of an autism e‐screener, Paisley, when utilized in a clinical research setting via a tablet application. The Paisley application used a series of play‐based activities, all of which incorporated varying aspects of the ASD‐PEDS. Participants included children (18–36 months; n = 198) referred for evaluation of autism spectrum disorder (ASD) and community providers (n = 66) with differing levels of familiarity with ASD. Community providers administered the Paisley application to children who then completed a comprehensive psychological evaluation. Based on comprehensive evaluation, 75% of children met diagnostic criteria for ASD. Paisley scores were significantly higher for children diagnosed with ASD (15.06) versus those not diagnosed (9.34). The newly determined cutoff ASD‐PEDS cutoff score of 13 had significantly higher specificity and positive predictive value than the originally proposed cutoff of 11. Results support the use of Paisley by community providers to identify autism risk in toddlers. Limitations and strengths of the work, as well as opportunities for future clinical validation, are described.

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Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care

Cited by 15 publications

References 45 publications

Survey of the Landscape of Society Practice Guidelines for Genetic Testing of Neurodevelopmental Disorders

Survey of the Landscape of Society Practice Guidelines for Genetic Testing of Neurodevelopmental Disorders

Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Paisley: Preliminary validation of a novel app‐based e‐Screener for ASD in children 18–36 months

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