A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives

Petruccelli, Marisa; Ramella, Leah; Schaefer, Ana J.; Sheldrick, R. Christopher; Carter, Alice S.; Eisenhower, Abbey; Broder‐Fingert, Sarabeth; Mackie, Thomas I.

doi:10.1007/s10803-021-04964-3

Cited by 7 publications

(2 citation statements)

References 40 publications

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“…Unfortunately, there are tangible negative consequences to this approach. Recently, we established a taxonomy that articulates challenges with this approach–mainly the “opportunity costs” that lead to long waitlists, lost treatments, and profound disparities (Petruccelli et al, 2022).…”

Section: Approach Example Toolsmentioning

confidence: 99%

Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers

et al. 2022

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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.

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Section: Approach Example Toolsmentioning

confidence: 99%

Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers

et al. 2022

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“… 1 Although reliable identification can be made in the second year of life, 2 the median age of autism diagnosis is after 4 years, 1 with greater disparities for children from racial and ethnic minority backgrounds 3 , 4 , 5 and underserved regions. 6 Wait times for diagnostic evaluations often exceed a year, 7 , 8 , 9 , 10 in part because the number of young children requiring an autism evaluation far exceeds available specialists. 11 , 12 These delays impede engagement in early intensive evidence-based interventions, which support development at the time of optimal neuroplasticity and reduce long-term care costs.…”

Section: Introductionmentioning

confidence: 99%

Eye-Tracking Biomarkers and Autism Diagnosis in Primary Care

Keehn,

Monahan,

Enneking

et al. 2024

JAMA Netw Open

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ImportanceFinding effective and scalable solutions to address diagnostic delays and disparities in autism is a public health imperative. Approaches that integrate eye-tracking biomarkers into tiered community-based models of autism evaluation hold promise for addressing this problem.ObjectiveTo determine whether a battery of eye-tracking biomarkers can reliably differentiate young children with and without autism in a community-referred sample collected during clinical evaluation in the primary care setting and to evaluate whether combining eye-tracking biomarkers with primary care practitioner (PCP) diagnosis and diagnostic certainty is associated with diagnostic outcome.Design, Setting, and ParticipantsEarly Autism Evaluation (EAE) Hub system PCPs referred a consecutive sample of children to this prospective diagnostic study for blinded eye-tracking index test and follow-up expert evaluation from June 7, 2019, to September 23, 2022. Participants included 146 children (aged 14-48 months) consecutively referred by 7 EAE Hubs. Of 154 children enrolled, 146 provided usable data for at least 1 eye-tracking measure.Main Outcomes and MeasuresThe primary outcomes were sensitivity and specificity of a composite eye-tracking (ie, index) test, which was a consolidated measure based on significant eye-tracking indices, compared with reference standard expert clinical autism diagnosis. Secondary outcome measures were sensitivity and specificity of an integrated approach using an index test and PCP diagnosis and certainty.ResultsAmong 146 children (mean [SD] age, 2.6 [0.6] years; 104 [71%] male; 21 [14%] Hispanic or Latine and 96 [66%] non-Latine White; 102 [70%] with a reference standard autism diagnosis), 113 (77%) had concordant autism outcomes between the index (composite biomarker) and reference outcomes, with 77.5% sensitivity (95% CI, 68.4%-84.5%) and 77.3% specificity (95% CI, 63.0%-87.2%). When index diagnosis was based on the combination of a composite biomarker, PCP diagnosis, and diagnostic certainty, outcomes were concordant with reference standard for 114 of 127 cases (90%) with a sensitivity of 90.7% (95% CI, 83.3%-95.0%) and a specificity of 86.7% (95% CI, 70.3%-94.7%).Conclusions and RelevanceIn this prospective diagnostic study, a composite eye-tracking biomarker was associated with a best-estimate clinical diagnosis of autism, and an integrated diagnostic model including PCP diagnosis and diagnostic certainty demonstrated improved sensitivity and specificity. These findings suggest that equipping PCPs with a multimethod diagnostic approach has the potential to substantially improve access to timely, accurate diagnosis in local communities.

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Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review

Dounavi,

Koldas

2024

J Autism Dev Disord

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Autism Spectrum Disorder (ASD) is a prevalent neurodevelopmental condition for which no prenatal or early life screening tests exist. Early life recognition of ASD is key to accessing behavioral intervention when brain plasticity is at its peak. The purpose of our study was to systematically review the literature researching parental perspectives around early life screening for autism and specifically genetic testing. A total of 30 studies were included and coded against the following variables: parental characteristics, child characteristics, research design, data collection and data analysis methods, type of early screening, and parental perspectives towards early life screening and genetic testing. The outcomes of the review showed that caregivers need more knowledge about ASD genetic testing, they are in general in favor of early life screening, and they prefer to access ASD genetic testing and early behavioral intervention as early as possible. As emerging genetic tests are likely to increase diagnostic accuracy for ASD in the near future, it is of paramount importance for research and practice to embrace parental needs and preferences. Healthcare providers can be pivotal in empowering parents to make informed decisions through clear, compassionate communication and counseling. Future research should seek to fill in an essential gap in the literature, which is to capture parental views from a diverse population.

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A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives

Cited by 7 publications

References 40 publications

Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers

Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers

Eye-Tracking Biomarkers and Autism Diagnosis in Primary Care

Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review

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