Catherine Rice

Timing of Identification Among Children With an Autism Spectrum Disorder: Findings From a Population-Based Surveillance Study

OBJECTIVE At what age are children with an autism spectrum disorder (ASD) identified by community providers? What factors influence the timing of when children are identified with ASDs? This study examined the timing of when children with ASDs are identified. METHOD Data came from 13 sites participating in the Centers for Disease Control and Preventions 2002 multisite ongoing autism surveillance program, the Autism and Developmental Disabilities Monitoring Network. Survival analysis was used to examine factors that influence the timing of community-based identification and diagnosis. RESULT Data from health and education records reveal that the median age of identification was 5.7 years (SE 0.08 years). Parametric survival models revealed that several factors were associated with a younger age of identification: being male, having an IQ of 70 or lower, and having experienced developmental regression. Significant differences in the age of identification among the 13 sites were also discovered. CONCLUSIONS The large gap between the age at which children can be identified and when they actually are identified suggests a critical need for further research, innovation, and improvement in this area of clinical practice.

Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample.

ABSTRACT. Early identification of young children with an autism spectrum disorder (ASD) can lead to earlier entry into intervention programs that support improved developmental outcomes. The purpose of the present study was to examine identification and diagnostic patterns of children with ASD who live in a large metropolitan area. One hundred fifteen 8-year-old children diagnosed with ASD were identified from a population-based surveillance system at the Centers for Disease Control and Prevention. Primary variables of interest included earliest age of evaluation and earliest age of diagnosis identified from surveillance records, type of initial ASD diagnosis, evaluation sources that documented first ASD diagnosis, characteristics of professionals assigning first ASD diagnosis, and diagnostic tools used to aid the diagnostic process. We found that children with ASD identified by the surveillance system were initially evaluated at a mean of 48 months but were not diagnosed with ASD until a mean age of 61 months. There were no differences in timing of diagnosis based on sex or racial/ethnic classification, although degree of impairment associated with ASD predicted mean age at first evaluation and mean age at first ASD diagnosis. Most children were identified at nonschool sources, such as hospitals and clinics; 24% of the sample did not receive a documented ASD diagnosis until entering school. Most practitioners (70%) did not use a diagnostic instrument when assigning the first ASD diagnosis. Implications for early identification of ASD are discussed.

The relationship between autism and parenting stress.

OBJECTIVE. We assessed associations between parenting a child with autism and stress indicators. METHODS. In the 2003 National Survey of Children’s Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child’s actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented. RESULTS. Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems. CONCLUSIONS. Parenting a child with autism with recent special service needs seems to be associated with unique stresses.

Autism Spectrum Disorder and Co-occurring Developmental, Psychiatric, and Medical Conditions Among Children in Multiple Populations of the United States

Background: Autism spectrum disorders (ASDs) often co-occur with other developmental, psychiatric, neurologic, or medical diagnoses. Objective: This study examined co-occurring non-ASD diagnoses and symptoms in a population-based cohort of 8 year olds identified with ASD. Method: Data on 2,568 children meeting surveillance case definition for ASD were collected by a multi-site surveillance program. Information was systematically abstracted and reviewed from existing health and education source records and systematically entered into a summary record in a secure database. Results: Eighty-one percent of study children were male; 63% white, 23% black, 14% Hispanic, Asian, or not stated. When age of ASD classification was available, 20% were classified before age 3 years, 36% between ages 3 and 5 years, and 44% after age 5 years. The co-occurrence of ≥1 non-ASD developmental diagnoses was 83%, ≥1 psychiatric diagnoses was 10%, ≥1 neurologic diagnoses was 16%, and at least one possibly causative genetic or neurologic diagnosis was 4%. Children with a previous ASD classification and co-occurring psychiatric or neurologic conditions were more likely to be diagnosed or classified at a later age. Each category of co-occurring non-ASD diagnosis was significantly increased in children whose records did not include an ASD diagnosis or educational classification but who met surveillance criteria for ASD. Conclusions: These data highlight the need for clinicians to keep in mind the high prevalence of associated diagnoses with an ASD diagnosis, and the possibility that in younger children other symptoms or disorders may be masking or obscuring core symptoms of ASD, which would lead to a diagnosis.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children

BACKGROUND One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics. METHODS We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Aspergers disorder, and Pervasive Developmental Disorder-Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention. RESULTS Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01). CONCLUSIONS Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Concurrent Medical Conditions and Health Care Use and Needs among Children with Learning and Behavioral Developmental Disabilities, National Health Interview Survey, 2006-2010.

Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a medical specialist and >9 office visits in past year), health impact measures (e.g. needing help with personal care), and selected indicators of unmet health needs (e.g. unable to afford needed prescription medications) among a nationally representative sample of children ages 3-17 years, with and without DDs. Children in four mutually exclusive developmental disability groups: autism (N = 375), intellectual disability (ID) without autism (N = 238); attention-deficit/hyperactivity disorder (ADHD) without autism or ID (N = 2901); and learning disability (LD) or other developmental delay without ADHD, autism, or ID (N = 1955); were compared to children without DDs (N = 35,775) on each condition or health care measure of interest. Adjusted odds ratios (aORs) were calculated from weighted logistic regression models that accounted for the complex sample design. Prevalence estimates for most medical conditions examined were moderately to markedly higher for children in all four DD groups than children without DDs. Most differences were statistically significant after adjustment for child sex, age, race/ethnicity, and maternal education. Children in all DD groups also had significantly higher estimates for health care use, impact, and unmet needs measures than children without DDs. This study provides empirical evidence that children with DDs require increased pediatric and specialist services, both for their core functional deficits and concurrent medical conditions.

Prevalence and Characteristics of Autism Spectrum Disorder Among 4-Year-Old Children in the Autism and Developmental Disabilities Monitoring Network.

Objective: Early identification of children with autism spectrum disorder (ASD) facilitates timely access to intervention services. Yet, few population-based data exist on ASD identification among preschool-aged children. The authors aimed to describe ASD prevalence and characteristics among 4-year-old children in 5 of 11 sites participating in the 2010 Autism and Developmental Disabilities Monitoring Network. Method: Children with ASD were identified through screening of health and education records for ASD indicators, data abstraction and compilation for each child, and clinician review of records. ASD prevalence estimates, ages at first evaluation and ASD diagnosis, cognitive test scores, and demographics were compared for 4-year-old children and 8-year-old children living in the same areas. Results: Among 58,467 children in these 5 sites, 4-year-old ASD prevalence was 13.4 per 1000, which was 30% lower than 8-year-old ASD prevalence. Prevalence of ASD without cognitive impairment was 40% lower among 4-year-olds compared with 8-year-olds, but prevalence of ASD with cognitive impairment was 20% higher among 4-year-olds compared with 8-year-olds. Among 4-year-olds with ASD, female and non-Hispanic white children were more likely to receive their first comprehensive evaluation by age 36 months compared with male and non-Hispanic black children, respectively. Among children diagnosed with ASD by age 48 months, median age at first comprehensive evaluation was 27 months for 4-year-olds compared with 32 months for 8-year-olds. Conclusion: Population-based ASD surveillance among 4-year-old children provides valuable information about the early identification of children with ASD and suggests progression toward lowering the age of first ASD evaluation within participating Autism and Developmental Disabilities Monitoring communities.

Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates

IMPORTANCE The DSM-5 contains revised diagnostic criteria for autism spectrum disorder (ASD) from the DSM-IV-TR. Potential impacts of the new criteria on ASD prevalence are unclear. OBJECTIVE To assess potential effects of the DSM-5 ASD criteria on ASD prevalence estimation by retrospectively applying the new criteria to population-based surveillance data collected for previous ASD prevalence estimation. DESIGN, SETTING, AND PARTICIPANTS Cross-sectional, population-based ASD surveillance based on clinician review of coded behaviors documented in childrens medical and educational evaluations from 14 geographically defined areas in the United States participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network in 2006 and 2008. This study included 8-year-old children living in ADDM Network study areas in 2006 or 2008, including 644 883 children under surveillance, of whom 6577 met surveillance ASD case status based on the DSM-IV-TR. MAIN OUTCOMES AND MEASURES Proportion of children meeting ADDM Network ASD criteria based on the DSM-IV-TR who also met DSM-5 criteria; overall prevalence of ASD using DSM-5 criteria. RESULTS Among the 6577 children classified by the ADDM Network as having ASD based on the DSM-IV-TR, 5339 (81.2%) met DSM-5 ASD criteria. This percentage was similar for boys and girls but higher for those with than without intellectual disability (86.6% and 72.5%, respectively; P < .001). A total of 304 children met DSM-5 ASD criteria but not current ADDM Network ASD case status. Based on these findings, ASD prevalence per 1000 for 2008 would have been 10.0 (95% CI, 9.6-10.3) using DSM-5 criteria compared with the reported prevalence based on DSM-IV-TR criteria of 11.3 (95% CI, 11.0-11.7). CONCLUSIONS AND RELEVANCE Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.

Trends in the Prevalence of Autism Spectrum Disorder, Cerebral Palsy, Hearing Loss, Intellectual Disability, and Vision Impairment, Metropolitan Atlanta, 1991–2010

This study examined the prevalence and characteristics of autism spectrum disorder (ASD), cerebral palsy (CP), hearing loss (HL), intellectual disability (ID), and vision impairment (VI) over a 15–20 year time period, with specific focus on concurrent changes in ASD and ID prevalence. We used data from a population-based developmental disabilities surveillance program for 8-year-olds in metropolitan Atlanta. From 1991–2010, prevalence estimates of ID and HL were stable with slight increases in VI prevalence. CP prevalence was constant from 1993–2010. The average annual increase in ASD prevalence was 9.3% per year from 1996–2010, with a 269% increase from 4.2 per 1,000 in 1996 to 15.5 per 1,000 in 2010. From 2000–2010, the prevalence of ID without ASD was stable; during the same time, the prevalence of ASD with and without co-occurring ID increased by an average of 6.6% and 9.6% per year, respectively. ASD prevalence increases were found among both males and females, and among nearly all racial/ethnic subgroups and levels of intellectual ability. Average annual prevalence estimates from 1991–2010 underscore the significant community resources needed to provide early intervention and ongoing supports for children with ID (13.0 per 1,000), CP, (3.5 per 1,000), HL (1.4 per 1,000) and VI (1.3 in 1,000), with a growing urgency for children with ASD.

Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs. METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model. RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD. CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.