Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children

,

doi:10.1542/peds.107.5.e85

Cited by 54 publications

(6 citation statements)

References 150 publications

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“…Early signs of ASD can be recognized by a trained professional earlier than age two years,(5) and early identification is associated with improved long-term developmental and family outcomes. (6–10) Because the lifetime cost of treating an individual with ASD exceeds $1 million in the US, efforts to identify promptly and treat ASD symptoms and comorbidities may also affect long-term costs. (11–13) Unfortunately, however, many children with ASD are not diagnosed until school age,(14–17) and poor, minority, and less-severely impaired children are often diagnosed even later.…”

mentioning

confidence: 99%

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

Zuckerman¹,

Lindly²,

Sinche³

2015

The Journal of Pediatrics

164

139

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Objective To assess age differences between first parental concern and first parental discussion of concerns with a health care provider, among children with autism spectrum disorder (ASD) versus intellectual disability/developmental delay (ID/DD), and to assess whether provider response to parental concerns is associated with delays in ASD diagnosis. Study design Using nationally-representative data from the 2011 Survey of Pathways to Diagnosis and Treatment, we compared child age at parent’s first developmental concern with age at first discussion of concerns with a provider, and categorized provider response as proactive vs. reassuring/passive, among 1420 children with ASD and 2098 children with ID/DD. Among children with ASD, we tested the association between provider response type and years of diagnostic delay. Results Compared with children with ID/DD, children with ASD were younger when parents first had concerns and first discussed those with a provider. Parents of children with ASD were less likely than parents of children with ID/DD to experience proactive responses to their concerns and were more likely to experience reassuring/passive responses. Among children with ASD, those with more proactive provider responses to concerns had shorter delays in ASD diagnosis. In contrast, children with ASD having passive/reassuring provider responses had longer delays. Conclusions Although parents of children with ASD have early concerns, delays in diagnosis are common, particularly when providers’ responses are reassuring or passive, highlighting needs for targeted improvements in primary care.

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confidence: 99%

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

Zuckerman¹,

Lindly²,

Sinche³

2015

The Journal of Pediatrics

164

139

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“…It is also possible that current managed health care system with complicated referral process and the limited time to interface with parents may have contributed to the lower physician referral to specialists for ASD. Finally, while the American Academy of Pediatrics recommendations released in 2001 [5], and revised in 2007 [6], indicate that pediatricians should screen for ASD and perform diagnostic evaluations, some pediatric practices may have not yet implemented these guidelines during the study time. We are currently underway to perform a follow-up to this initial study.…”

Section: Discussionmentioning

confidence: 99%

“…Recent evidence shows that early intensive behavior interventions in children diagnosed with ASD prior to age 3 can result in significant improvement in cognitive, social and adaptive functioning in children with ASD [1-3]. Pediatricians and other primary health care physicians may play a pivotal role in the early detection of ASD because they provide developmental surveillance and screening for all children as part of a medical home [4,5]. Specialty referral is often necessary to confirm a diagnosis of ASD and evaluate medical co-morbidities [6].…”

Section: Introductionmentioning

confidence: 99%

“…In an effort to improve early detection of ASD, a number of recent public service initiatives and professional resources have been developed to improve recognition of ASD in the home, school and primary care medical practice. Other efforts to improve detection and care for children with ASD have included updated practice parameters [5,6] addressing screening, surveillance, and treatment for ASD in the medical home.…”

Section: Introductionmentioning

confidence: 99%

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Access to specialty care in autism spectrum disorders-a pilot study of referral source

Xue

Hashim

Fleishman

et al. 2011

BMC Health Serv Res

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BackgroundIn the United States, a medical home model has been shown to improve the outcomes for children with special health care needs. As part of this model, primary care physicians provide comprehensive medical care that includes identification of delayed and/or atypical development in children and coordination of care with specialists. However, it is not clear if families of children with Autism Spectrum Disorder (ASD) rely on the medical home model for care of their child to the same extent as families of children with other special health care needs. This study aims to add to the understanding of medical care for children with ASD by examining the referral source for specialty care.MethodsThis retrospective study was accomplished by evaluating parent completed intake data for children with ASD compared to those with other neurological disorders in a single physician Pediatric Neurology Practice at a major urban medical center in Northern New Jersey. To account for referral bias, a similar comparison study was conducted using a multispecialty ASD practice at the same medical center. Parent reported "source of referral" and "reason for the referral" of 189 ASD children and 108 non-ASD neurological disordered children were analyzed.ResultsThe specialty evaluations of ASD were predominantly parent initiated. There were significantly less referrals received from primary care physicians for children with ASD compared to children with other neurodevelopmental disorders. Requirement of an insurance referral was not associated with a primary care physician prompted specialty visit.We identified different patterns of referral to our specialty clinics for children with ASD vs. children with other neurolodevelopmental disorders.ConclusionThe majority of the families of children with ASD evaluated at our autism center did not indicate that a primary care physician initiated the specialty referral. This study suggests that families of children with ASD interface differently with the primary care provider than families of children with other neurological disorders.

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“…Diagnosis of affected individuals falls on a spectrum, with variability both in the presence or absence of specific autistic features as well as variability in the severity of those features (Tager-Flusberg and Joseph 2003, Walker et al 2004, Volkmar et al 2009, Rutter 2011). Existing treatments are primarily behavioral, with early intervention having a positive impact on the lifelong course of the condition (Committee on Children with Disabilities 2001). …”

Section: Introductionmentioning

confidence: 99%

Modeling the Autism Spectrum Disorder Phenotype

2013

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Background Autism Spectrum Disorder (ASD) is highly heritable, and although there has been active research in an attempt to discover the genetic factors underlying ASD, diagnosis still depends heavily on behavioral assessments. Recently, several large-scale initiatives, including those of the Autism Consortium, have contributed to the collection of extensive information from families affected by ASD. Purpose Our goal was to develop an ontology that can be used 1) to provide improved access to the data collected by those who study ASD and other neurodevelopmental disorders, and 2) to assess and compare the characteristics of the instruments that are used in the assessment of ASD. Materials and Methods We analyzed two dozen instruments used to assess ASD, studying the nature of the questions asked and items assessed, the method of delivery, and the overall scope of the content. These data together with the extensive literature on ASD contributed to our iterative development of an ASD phenotype ontology. Results The final ontology comprises 283 concepts distributed across three high-level classes, ‘Personal Traits’, ‘Social Competence’, and ‘Medical History’. The ontology is fully integrated with the Autism Consortium database, allowing researchers to pose ontology-based questions. The ontology also allows researchers to assess the degree of overlap among a set of candidate instruments according to several objective criteria. Conclusions The ASD phenotype ontology has promise for use in research settings where extensive phenotypic data have been collected, allowing a concept-based approach to identifying behavioral features of importance and for correlating these with genotypic data.

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Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children

Cited by 54 publications

References 150 publications

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

Access to specialty care in autism spectrum disorders-a pilot study of referral source

Modeling the Autism Spectrum Disorder Phenotype

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