Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis

Martínez, M.; Thomas, Kelsey R.; Williams, Christianna S.; Christian, Robert; Crais, Elizabeth R.; Pretzel, Rebecca Edmondson; Hooper, S. R.

doi:10.1007/s10803-018-3493-1

Cited by 45 publications

(40 citation statements)

References 41 publications

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“…Factors associated with age at ASD diagnosis. Of the 56 studies, 10 did not report any influencing factors on age at diagnosis (Cawthorpe, 2018;Garrido et al, 2018;Hausman-Kedem et al, 2018;Lo et al, 2017;Martinez et al, 2018;Masri et al, 2013;May et al, 2017;Mpaka et al, 2016;Nadeem et al, 2019;Ribeiro et al, 2017). However, 46 studies reported many possible influencing factors on age at ASD diagnosis, including type of ASD diagnosis, additional diagnoses and gender among the most frequently reported (Supplemental Material 2).…”

Section: Additional Analysesmentioning

confidence: 99%

Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019

Hof

Tisseur²,

Berckelear-Onnes

et al. 2020

Autism

254

109

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Between 1990 and 2012, the global mean age at diagnosis of autism spectrum disorder ranged from 38 to 120 months. Measures have since been introduced to reduce the age at autism spectrum disorder diagnosis, but the current global mean age is unknown. This review and meta-analysis report the average age at diagnosis from studies published between 2012 and 2019. We initially identified 1150 articles, including 56 studies that reported the mean or median age at diagnosis across 40 countries (n = 120,540 individuals with autism spectrum disorder). Meta-analysis results (on 35 studies, including 55 cohorts from 35 countries, n = 66,966 individuals with autism spectrum disorder) found a current mean age at diagnosis of 60.48 months (range: 30.90–234.57 months). The subgroup analysis for studies that only included children aged ⩽10 years (nine studies, including 26 cohorts from 23 countries, n = 18,134 children with autism spectrum disorder) showed a mean age at diagnosis of 43.18 months (range: 30.90–74.70 months). Numerous factors may influence age at diagnosis and were reported by 46 studies, often with conflicting or inconclusive findings. Our study is the first to ascertain the global average age at autism spectrum disorder diagnosis from a meta-analysis. Continued efforts to lower the average age at autism spectrum disorder diagnosis are needed. Lay abstract We currently assume that the global mean age at diagnosis of autism spectrum disorder ranges from 38 to 120 months. However, this range is based on studies from 1991 to 2012 and measures have since been introduced to reduce the age at autism spectrum disorder diagnosis. We performed a systematic review and meta-analysis (statistical analysis that combines the results of multiple scientific studies) for studies published between 2012 and 2019 to evaluate the current age at autism spectrum disorder diagnosis. We included 56 studies that reported the age at diagnosis for 40 countries (containing 120,540 individuals with autism spectrum disorder). Results showed the current mean age at diagnosis to be 60.48 months (range: 30.90–234.57 months) and 43.18 months (range: 30.90–74.70 months) for studies that only included children aged ⩽10 years. Numerous factors that may influence age at diagnosis (e.g. type of autism spectrum disorder diagnosis, additional diagnoses and gender) were reported by 46 studies, often with conflicting or inconclusive results. Our study is the first to determine the global average age at autism spectrum disorder diagnosis from a meta-analysis. Although progress is being made in the earlier detection of autism spectrum disorder, it requires our constant attention.

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Section: Additional Analysesmentioning

confidence: 99%

Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019

Hof

Tisseur²,

Berckelear-Onnes

et al. 2020

Autism

254

109

View full text Add to dashboard Cite

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“…Children living in geographically rural areas may have limited access to early, intensive evidencebased interventions suggesting children residing in these areas are less likely to experience positive outcomes than their urban-dwelling peers (Mello, Goldman, Urbano, & Hodapp, 2016). Access to trained providers is also identified as a barrier for rural families as they are often made to wait their turn for services or face additional costs to travel long distances to obtain necessary services widening the equity gap due to geographical location (Martinez et al, 2018).…”

Section: Access For Families In Rural Areasmentioning

confidence: 99%

“…The family-centered approach of P-ESDM aligns with the state's primary service provider model in which one member of the multidisciplinary team is selected to be the family's primary contact for early intervention services. Likewise, our state faces persistent personnel shortages in early childhood intervention, often cited as a barrier to accessing high quality services for families living in rural and remote areas (Martinez et al, 2018). For this reason, telehealth was chosen as the means for implementation of P-ESDM.…”

Section: Independent Variable (Iv)mentioning

confidence: 99%

Effects of a parent training using telehealth: Equity and access to early intervention for rural families

Rooks-Ellis

Howorth

Kunze³

et al. 2020

J Child Edu Soc

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Children living in geographically rural areas may have limited access to early, intensive evidence-based interventions suggesting children residing in these areas are less likely to experience positive outcomes than their urban-dwelling peers. Telehealth offers an option to rural families seeking early intervention by using communication technologies where providers are able to consult and deliver services in real-time over geographical distances. To our knowledge, no other study has examined the implementation of P-ESDM in rural natural environments within the framework of the state’s early intervention program. Using a multiple baseline design across participants, the current study investigated the effects of the parent-Early Start Denver Model implemented within a rural northeastern state’s existing IDEA Part C early intervention program. Parents demonstrated increased fidelity to intervention strategies and reported satisfaction with the program’s ease of implementation and observed child gains. Statistically significant pre-to post- change in children’s ASD symptomatology were reported for the domains of communication, social reciprocity and repetitive and restricted behaviors. Support for parent-mediated interventions, the importance of fidelity of implementation for sustainability of intervention strategies, and the need to explore telehealth as a viable service delivery option to improve developmental trajectories for toddlers with autism are discussed.

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“…Others report they are not well prepared to identify children or comfortable talking with families about ASD concerns (Crais et al, 2014), including those from Latino families (Zuckerman et al, 2013). Despite high self-reports of pediatric screening (Self et al, 2015), in a recent survey of caregivers of young children with ASD, only half reported their child was screened for ASD (Martinez et al, 2018). However, some families may not be aware of screening if they do not complete a form and are asked questions orally.…”

mentioning

confidence: 99%

Autism Spectrum Disorder Identification, Diagnosis, and Navigation of Services: Learning From the Voices of Caregivers

Crais

McComish

Kertcher

et al. 2020

Focus Autism Other Dev Disabl

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This study explored caregivers’ perspectives on facilitators and barriers to screening, diagnosis, and identifying and accessing other services for young children with autism spectrum disorder (ASD); and caregivers’ suggestions for improving the process. Eight focus groups with 55 caregivers were conducted. Four groups had a mix of White, African American, and Asian caregivers, and to gain broader populations, we recruited two groups of Spanish-speaking and two groups of American Indian caregivers. Some caregivers reported that their child and they received excellent services; however, the majority reported concerns about the services they and their child received. The findings also indicated a lower age of diagnosis and a smaller gap between concerns and diagnosis for White non-Hispanic children compared with Hispanic non-White children. Caregivers had many suggestions for ways to improve the process.

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Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis

Cited by 45 publications

References 41 publications

Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019

Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019

Effects of a parent training using telehealth: Equity and access to early intervention for rural families

Autism Spectrum Disorder Identification, Diagnosis, and Navigation of Services: Learning From the Voices of Caregivers

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