Age of Parental Concern, Diagnosis, and Service Initiation Among Children With Autism Spectrum Disorder

Zablotsky, Benjamin; Colpe, Lisa J.; Pringle, Beverly; Kogan, Michael D.; Rice, Catherine E.; Blumberg, Stephen J.

doi:10.1352/1944-7558-122.1.49

Cited by 73 publications

(73 citation statements)

References 39 publications

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“…Speech/language/communication concerns were not associated with timing of diagnosis, which differs from a previous study in which verbal and nonverbal communication concerns were associated with an earlier ASD diagnosis ( 14 ).…”

Section: Speech/language/communication Concernscontrasting

confidence: 99%

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia

Jayanath

Ozonoff

2020

MJMS

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Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder. This is the first study to examine first parental concerns in ASD in Malaysia. We examined: i) age and type of first parental concerns (AOC); ii) association between AOC and severity; iii) time lag between AOC and diagnosis; and iv) factors associated with diagnostic delay. Methods: Medical records of 366 patients (aged 1–18 years) with ASD, at the Developmental Paediatrics Clinic of University of Malaya Medical Centre (UMMC), Kuala Lumpur, were reviewed for this 16-month retrospective cohort study. A validated coding system was used for initial parent concerns. Severity was classified via the Diagnostic and Statistical Manual of Mental Disorders-5th edition (DSM-5) criteria. Time lag between AOC and age at diagnosis (AOD) was calculated. Potential predictors of delayed diagnosis were extracted. Results: Three-quarters (75.1%) of parents had concerns by 36 months. Speech/language/ communication concerns were most frequent (60.1%). Number of first concerns was significantly correlated with severity (social communication/interaction, SCI [P = 0.019] and restricted, repetitive patterns of behaviours and/or interests/activities, RRB [P < 0.001]). AOC and AOD were significantly negatively correlated with SCI and RRB (P < 0.001). Medians; AOC: 24 months, AOD: 46 months and time lag: 17 months. Higher initial screen time was associated with diagnostic delay (P = 0.031). Conclusion: First parental concerns and AOD were comparable to studies across countries. Speech/communication delays may represent universal first parental recognition of ASD.

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Section: Speech/language/communication Concernscontrasting

confidence: 99%

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia

Jayanath

Ozonoff

2020

MJMS

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“…Parents in our sample reported sharing concerns about their children's development with a professional, on average 3 years before an ASD diagnosis was made, and 7 months earlier than in the 2011 Survey of Pathways to Diagnosis and Services (N = 1287). 11 Delays in diagnosis occurred despite the fact that the vast majority of the children in our sample had health insurance. Within this sample, earlier diagnosis was associated with lower IQ, which is consistent with clinical observations that children with more severe developmental delays are brought to clinical attention earlier.…”

Section: Discussionmentioning

confidence: 84%

Timing of the Diagnosis of Autism in African American Children

et al. 2020

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OBJECTIVES: African American (AA) children affected by autism spectrum disorder (ASD) experience delays in diagnosis and obstacles to service access, as well as a disproportionate burden of intellectual disability (ID) as documented in surveillance data recently published by the US Centers for Disease Control and Prevention. Our objective in this study was to analyze data from the largest-available repository of diagnostic and phenotypic information on AA children with ASD, and to explore the wide variation in outcome within the cohort as a function of sociodemographic risk and specific obstacles to service access for the purpose of informing a national approach to resolution of these disparities. METHODS: Parents of 584 AA children with autism consecutively enrolled in the Autism Genetic Resource Exchange across 4 US data collection sites completed event history calendar interviews of the diagnostic odysseys for their children with ASD. These data were examined in relation to developmental outcomes of the children with autism and their unaffected siblings. RESULTS: The average age of ASD diagnosis was 64.9 months (649.6), on average 42.3 months (645.1) after parents' first concerns about their children's development. The relationship between timing of diagnosis and ASD severity was complex, and ID comorbidity was not predicted in a straightforward manner by familial factors associated with cognitive variation in the general population. CONCLUSIONS: These findings document significant opportunity to expedite diagnosis, the need to further understand causes of ID comorbidity, and the necessity to identify effective approaches to the resolution of disparities in severity-of-outcome for AA children with autism. WHAT'S KNOWN ON THIS SUBJECT: African American (AA) children with autism experience racial disparities in timing of diagnosis and access to quality interventions. AA children experience twice the rate of comorbid intellectual disability and higher rates of misdiagnosis of autism compared with non-Hispanic white children. WHAT THIS STUDY ADDS: These data reveal a 3-year time lag between parental recognition of developmental delay and autism diagnosis among AAs, and that excess intellectual disability burden cannot be explained by ascertainment bias or by traditional familial predictors of cognitive outcome.

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“…While developmental variation in the population is to be expected, a cluster of behaviours or missed milestones ('red flags') can signal the presence of a potential underlying problem and may be indicative of disordered behaviour [20]. Parental 'prediction' of ASD diagnosis via problematic behaviours has been shown to be reliable, both in prospective and longitudinal studies [21,22] and in studies utilising retrospective population data [23,24].…”

Section: Introductionmentioning

confidence: 99%

Recognising autism: a latent transition analysis of parental reports of child autistic spectrum disorder ‘red flag’ traits before and after age 3

Spikol

McAteer

Murphy

2019

Soc Psychiatry Psychiatr Epidemiol

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Purpose It has been proposed that parents should be educated about child autistic spectrum disorder (ASD) 'red flag' traits to help professionals identify and address concerning behaviours as early as possible. This study aimed to empirically demonstrate that established/recognised 'red flag' traits in the first 3 years of life would reliably predict ASD risk severity in later childhood, associated with established ASD risk correlates and mirroring functioning diagnostic categories. Methods Using retrospective parental report data from the Mental Health of Children and Young People in Great Britain survey (N = 7977), latent class analysis (LCA) and a quasi-latent transition analysis were used to (1) identify profiles of variation in parent reports of child 'red flag' traits before and after age 3 and (2) model transitions in risk from 3 years and below to ≥ 3 years, respectively, per the 'optimal outcome' model. Results Three distinct classes, each characterised by variation in parent 'red flag' trait reporting were identified for the '≤ 3 years of age' and the '≥ 3 years of age' data. Both LCA class profiles comprised groups of children characterised by low, medium and high ASD risk. Dose-response effects for a number of recognised ASD correlates across the low, moderate and high risk '≥ 3 years of age' classes seemed to validate older classes in terms of ASD relevance. Over 54% of children characterised by the highest levels of ASD 'red flag' trait probability at 3 years and below (2% of sample), also populated the high-risk class evidenced in the '≥ 3 years of age' LCA. Conclusions Retrospective parental reports of child ASD 'red flag' traits ≤ 3 years of age were reliable indicators of ASD risk in later childhood.

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Age of Parental Concern, Diagnosis, and Service Initiation Among Children With Autism Spectrum Disorder

Cited by 73 publications

References 39 publications

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia

Timing of the Diagnosis of Autism in African American Children

Recognising autism: a latent transition analysis of parental reports of child autistic spectrum disorder ‘red flag’ traits before and after age 3

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