Autism spectrum disorder (ASD) is a neuro-behavioral syndrome that develops in childhood and can be comorbid with restrictive and avoidant food intake disorder. This case details a young man who was hospitalized with pancytopenia due to restrictive nutritional intake related to his severe ASD. He was found to have undetectable vitamin B12 levels. His blood counts improved with transfusion, nutritional supplementation, and dental care. This report illustrates the importance of understanding ASD and potential medical complications of related behaviors.
This study describes charges, outcomes, and recidivism in both the juvenile and adult criminal justice systems (CJS) for young adults aged 17 to 23 years with autism spectrum disorder (ASD; n = 606). Results are compared to individuals with ID (n = 1271) and a population control group (n = 2973). About 3% of individuals with ASD were charged with at least one offense by the time they reached young adulthood. Few differences were found in CJS involvement across groups. Young adults with ASD were not over represented in the CJS in general, and were less likely to be involved in the adult justice system than their peers. They received similar charges and outcomes and were as likely to reoffend as their peers.
Children with developmental disabilities are at heightened risk for maltreatment. However, little is known regarding the prevalence of maltreatment among specific groups, such as autism spectrum disorder (ASD) and/or intellectual disability (ID). Information about maltreatment in these groups can aid in the development of supports and prevention strategies for vulnerable children and their families. Using record linkage between the Department of Social Services (DSS) and the Autism and Developmental Disabilities Monitoring (ADDM) network, this study compares the prevalence and characteristics of maltreatment among children with ASD-only ( n = 316), ASD and comorbid ID (ASD+ID; n = 291), ID-only ( n = 1,280), and controls ( n = 3,101). Behavioral correlates of maltreatment are examined. Controlling for demographic factors, this study found significantly higher odds of reported and substantiated maltreatment among children with ASD-only (odds ratio = 1.86 for reported, 1.51 for substantiated), ASD+ID (odds ratio = 2.35 for reported, 1.97 for substantiated), and ID-only (odds ratio = 2.45 for reported, 2.49 for substantiated) relative to a population control group, with large effects. In particular, children with ASD+ID and ID-only were between two and three times more likely to experience maltreatment. All groups were more likely to experience physical neglect, and children in the ASD+ID and ID-only groups were more likely to experience all forms of abuse. Children in the ASD-only group were more likely to experience physical abuse. Maltreated children in the ASD-only and ID-only groups experienced more cases of physical abuse and neglect, and were victimized by more perpetrators compared to other maltreated youth. Maltreatment was associated with higher likelihood of aggression, hyperactivity, and tantrums for children with ASD. Children with ASD and/or ID are at heightened risk for maltreatment. Empirically-supported assessment and intervention approaches for identifying and addressing traumatic stress related to maltreatment in ASD are urgently needed.
Adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) may utilize the emergency department (ED) more frequently than individuals in the general population. This study compared ED utilization and charges during adolescence among four groups of individuals: ASD‐only, ASD + ID, ID‐only, and a population comparison (PC) group. ED visits occurring during age 12–17 years were examined to identify non, low, and high utilizers. Logistic regression was used to compare groups on the odds of having at least one ED visit during adolescence. Generalized linear models were used to compare groups on number of ED visits and total charges, stratified by low and high ED utilization. Descriptive examination of presenting diagnoses was performed. Individuals with ID, with or without co‐occurring ASD, were significantly more likely to have at least one ED visit during adolescence. Among high ED utilizers, the ID‐only group had the most frequent ED visits but had significantly lower charges than the ASD‐only group. Individuals with ASD‐only and ASD + ID differed from the ID‐only and PC groups in presenting diagnoses. No differences between groups in number of ED visits or charges were observed among low utilizers. ID, with or without ASD, increased the odds of visiting the ED during adolescence. Adolescents with ID‐only had the most frequent ED visits, but individuals with ASD‐only had the highest ED charges and tended to be seen for psychiatric concerns. Further research is warranted to better characterize and meet the healthcare needs of individuals with ASD and/or ID during adolescence. Autism Res 2019, 12: 1129–1138. © 2019 International Society for Autism Research, Wiley Periodicals, Inc.Lay SummaryFrequent emergency department (ED) visits strain medical resources and are costlier than primary and urgent care. Our findings show that adolescents with intellectual disability (ID) may use the ED frequently for nonurgent conditions. Adolescents with autism spectrum disorder, without ID, use the ED less frequently but incur higher charges. Further research is needed to understand how to meet the unique needs of these populations in primary care to prevent overuse of the ED.
The objective of this trial, Biomarkers in Autism of Aripiprazole and Risperidone Treatment (BAART), was to provide support and guidance for an evidence-based approach for the selection and monitoring of initial pharmacotherapy in patients with autism by assessing predictors of efficacy, tolerability, and safety. This randomized double-blind parallel-group study was conducted in three academic medical centers and a single private pediatric practice. Eighty children or adolescents (aged 6-17 yrs) with autistic disorder were enrolled, and 61 patients were randomized to the study drug. Of those patients, 51 completed the 10-week trial, and 31 completed an optional 12-week blinded extension phase. All patients were treated with 2 weeks of placebo before random assignment to receive aripiprazole (31 patients) or risperidone (30 patients) for 10 weeks. Sixteen placebo responders (20%) were excluded from further analysis. Drug dosing followed U.S. Food and Drug Administration (FDA) labeling, and weekly dosage adjustments were allowed until week 4; patients were then maintained on a fixed dose for 6 additional weeks. Safety, physical, and psychological assessments were recorded weekly or every 2 weeks. No significant differences in severity of illness between the aripiprazole and risperidone groups were noted at baseline. All patients significantly improved on the Aberrant Behavior Checklist-Irritability subscale after 1 week and continued for the remaining 9 weeks and the extension phase. Improvement was greatest in the risperidone group at every assessment period and was statistically significantly better than that in the aripiprazole group at weeks 3 and 6 (p<0.05). No dose-limiting adverse events occurred during the dose-titration period. Mean weight gain in the aripiprazole group was significantly less than that in the risperidone group at week 4 (0.62 vs 1.38 kg, p=0.033) and week 10 (1.61 vs 3.31 kg, p<0.001), but the difference became nonsignificant for the 31 patients completing the 3-month extension phase (4.36 vs 5.55 kg, p=0.26). Pharmacotherapy of patients with autism spectrum disorder resulted in behavioral improvement within 1 week and lasted at least 22 weeks. Weight gain occurred to a greater degree with risperidone than aripiprazole initially, but the differences became nonsignificant by the end of the trial. Our trial supports previous results of drug efficacy and safety in patients with autism spectrum disorder from other trials and extends the evidence-based support for choosing an FDA-approved drug for initial pharmacotherapy for autism spectrum disorder.
BACKGROUNDChildren with developmental disabilities are at heightened risk for maltreatment. However, little is known regarding the prevalence of maltreatment among specific groups, such as autism spectrum disorder (ASD) and/or intellectual disability (ID). Information about maltreatment in these groups can aid in the development of supports and prevention strategies for vulnerable children and their families.METHODSUsing record linkage between the Department of Social Services (DSS) and the Autism and Developmental Disabilities Monitoring (ADDM) network, this study compares the prevalence and characteristics of maltreatment among children with ASD-only (n = 316), ASD and comorbid ID (ASD+ID; n = 291), ID-only (n = 1,280), and controls (n = 3,101). Behavioral correlates of maltreatment are examined.RESULTSControlling for demographic factors, this study found significantly higher odds of reported and substantiated maltreatment among children with ASD-only (odds ratio = 1.86 for reported, 1.51 for substantiated), ASD+ID (odds ratio = 2.35 for reported, 1.97 for substantiated), and ID-only (odds ratio = 2.45 for reported, 2.49 for substantiated) relative to a population control group, with large effects. In particular, children with ASD+ID and ID-only were between two and three times more likely to experience maltreatment. All groups were more likely to experience physical neglect, and children in the ASD+ID and ID-only groups were more likely to experience all forms of abuse. Children in the ASD-only group were more likely to experience physical abuse. Maltreated children in the ASD-only and ID-only groups experienced more cases of physical abuse and neglect, and were victimized by more perpetrators compared to other maltreated youth. Maltreatment was associated with higher likelihood of aggression, hyperactivity, and tantrums for children with ASD.CONCLUSIONSChildren with ASD and/or ID are at heightened risk for maltreatment. Empirically-supported assessment and intervention approaches for identifying and addressing traumatic stress related to maltreatment in ASD are urgently needed.
PROBLEM/CONDITION:Autism spectrum disorder (ASD). PERIOD COVERED:2012. DESCRIPTION OF SYSTEM:The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known comprehensive evaluation was performed, the proportion of children with a previous ASD diagnosis, the specific type of ASD diagnosis, and any special education eligibility classification. RESULTS:For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.6 per 1,000 (one in 68) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.6 per 1,000) than among girls aged 8 years (5.3 per 1,000). Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000), and Hispanic (10.1 per 1,000) children aged 8 years. Estimated prevalence varied widely among the 11 ADDM Network sites, ranging from 8.2 per 1,000 children aged 8 years (in the area of the Maryland site where only health care records were reviewed) to 24.6 per 1,000 children aged 8 years (in New Jersey, where both education and health care records were reviewed). Estimated prevalence was higher in surveillance sites where education records and health records were reviewed compared with sites where health records only were reviewed (17.1 per 1,000 and 10.7 per 1,000 children aged 8 years, respectively; p<0.05). Among children identified with ASD by the ADDM Network, 82% had a previous ASD diagnosis or educational classification; this did not vary by sex or between non-Hispanic white and non-Hispanic black children. A lower percentage of Hispanic children (78%) had a previous ASD diagnosis or classification compared with non-Hispanic white children (82%) and with non-Hispanic black children (84%). The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months. The percentage of children with an earliest known comprehensive evaluation by age 36 months was similar for boys and girls, but was higher for non-Hispanic white children (45%) compared with non-Hispanic black children (40%) and Hispanic children (39%). INTERPRETATION:Overall estimated ASD prevalence was 14.6 per 1,000 children aged 8 years in the ADDM Network sites in 2012. The higher estimated prevalence among sites that reviewed both education and health records suggests the role of special education systems in providing comprehensive evaluations and services to children with developmental disabilities. Disparities by race/ethnicity in estimated ASD prevalence, particularly for Hispanic children, as well as disparities in the age of earliest comprehensive evaluation and presence of a previous ASD diagnosis or classification, suggest that access to treatment and services might be lacking or delayed for some children. PUBLIC HEALTH ACTION:The ADDM Network will continue to monitor the prevalence and characteristics of ASD among children aged 8 years living in selected sites across the United States. Recommendations from the ADDM Network include enhancing strategies to 1) lower the age of first evaluation of ASD by community providers in accordance with the Healthy People 2020 goal that children with ASD are evaluated by age 36 months and begin receiving community-based support and services by age 48 months; 2) reduce disparities by race/ethnicity in identified ASD prevalence, the age of first comprehensive evaluation, and presence of a previous ASD diagnosis or classification; and 3) assess the effect on ASD prevalence of the revised ASD diagnostic criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.
Ambulatory care sensitive (ACS) admissions are those for which effective primary care can prevent the need for emergency department (ED) visits and inpatient hospitalizations, and are an indicator of primary care access. Individuals with autism spectrum disorder (ASD) and/or intellectual disability (ID) may be at higher risk for ACS admissions than individuals in the general population due to difficulty accessing primary care. The objective of this study was to compare the incidence of ACS admissions among four cohorts of individuals aged 2-24 years: ASD without co-occurring ID (ASD-only), ASD with co-occurring ID (ASD + ID), ID without ASD (ID-only), and population controls (PC). Data from ED visits and inpatient hospitalizations occurring between January 1, 2000 and December 31, 2015 were examined to identify ACS admissions. Generalized linear models were used to examine differences between cohorts on the number of ACS ED visits and inpatient hospitalizations. Results revealed the ASD + ID and ID-only cohorts had significantly higher rates of ACS inpatient hospitalizations than the PC cohort. Additionally, the ID-only cohort had higher rates of ACS ED visits than the PC cohort. The ASD-only and PC cohorts did not differ on incidence of ACS admissions. These findings suggest that presence of an ID with or without co-occurring ASD increased the risk for ACS inpatient hospitalizations, and presence of ID-only increased the risk for ACS ED visits. Future work should examine trajectories of ACS admissions over time and consider inclusion of additional characteristics that may elucidate reasons for differences in ACS admissions among these groups. Autism Res 2019, 12: 295-302 © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Preventable hospitalizations are a common indicator of problems with access to quality primary healthcare. Findings of this study suggest that individuals with intellectual disability, with or without autism spectrum disorder, have higher rates of preventable hospitalizations than the general population. Further research is needed to understand how to improve access to primary care and reduce preventable hospitalizations for this vulnerable population.
“Autism and the Extended Family” is a unique book geared toward the family members of someone who has autism spectrum disorder (ASD). The book is written by Raun Melmed, a nationally known developmental-behavioral pediatrician who is a cofounder of the Southwest Autism Research and Resource Center. It is endorsed by Temple Grandin, one of the first individuals with autism who spoke publicly about her diagnosis and became most famously known as an advocate for autism rights. It is quick and easy to read and provides some great tips for family members. There is a chapter for each type of family member: grandparents, siblings, stepfamilies and blended families, uncles and aunts, close friends, and cousins. Although some information overlaps quite a bit in chapters, “case examples” in the viewpoint of that specific family member strengthen chapters. For example, “Grandpa Carlos” realizes that he does not know how to interact with his autistic granddaughter Maria but decides to help by installing safety locks on the windows and doors to prevent elopement. In the aunt and uncle chapter, “Aunt Melissa” schedules a mall date with her nonautistic niece because she notices that her sister cannot take both children to the mall by herself. These examples make the book relatable and provide helpful, concrete examples of ways in which family members can get involved. The sibling chapter was particularly strong, highlighting the impact autism has on a sibling. This text has an appendix with 9 activities for the family to complete together. Although some are not actual “activities” (e.g., how to communicate and conflict resolution for the extended family), they are generally helpful and I will likely incorporate these suggestions into my clinical practice. These wonderful ideas included creating an autism survival kit, an individual parent's plan, and educational explanation cards. One especially helpful resource is chapter 10, “Surviving and Enjoying Special Events and Holidays.” This emphasized tips to make the holiday season less chaotic and more enjoyable for the child and subsequently the family. The strength of this book is that it is easy to read for a layperson, but this also leads to some weaknesses. In multiple areas, when referring to the child, it is assumed that the child is a “he.” In the first chapter, the authors perhaps oversimplify the diagnosis of ASD and fail to mention the comorbidities of autism that often contribute to a child's behavioral difficulties (e.g., intellectual disability, attention-deficit/hyperactivity disorder, sleep problems, language delay, and anxiety). It would have been helpful to discuss how extended family members can encourage parents to seek medical advice. The second chapter is dedicated to the “stages of grief.” Although later chapters on family members have an aura of optimism and hope, the downbeat introductory chapters could be a deterrent to individuals completing the book. “Autism and the Extended Family” is a unique, easy-to-read book that fills a void in literacy resources for extended family members. The book provides useful, specific tips that may be helpful for clinical providers to share with families. An additional selling point is that the publisher allows the purchaser to make copies of the book's content for educational purposes. It concludes with Emily Pearl Kingsley's “Holland Metaphor”: If you end up in Holland when planning a trip to Italy, mourning to go to Italy may make you miss the special things about Holland. This text empowers family members to “enjoy Holland” and develop a strong family support system that clinicians know can contribute to a child's success.
OBJECTIVES: To provide an example of a successful, novel statewide effort to increase early identification of young children at risk for autism spectrum disorder (ASD) using a 2-tiered screening process with enhanced quality assessment, interagency policy collaboration and coordination. METHODS: The South Carolina Act Early Team (SCAET) provided focused collaboration among leaders representing state agencies, universities, health care systems, private organizations, and families to improve quality of life for children with ASD. Specific focus was on implementing policy changes and training to result in earlier identification and home-based behavioral intervention for young children at risk for ASD. RESULTS: Policy changes, training, and modified state agency practices were accomplished. Presumptive eligibility, on the basis of a 2-tiered screening process was implemented by BabyNet (South Carolina’s Early Intervention Program) in collaboration with the lead agency for developmental disability services. There was a fivefold increase in children eligible for early intensive behavioral intervention without waiting for a diagnosis of ASD, avoiding long waits for diagnostic evaluations. Only 16 children (2.5%) were later found not to have ASD from a comprehensive evaluation. CONCLUSIONS: Improvements in early identification and intervention are feasible through collaborative policy change. The South Carolina Act Early Team and its key stakeholders committed to improving outcomes for this population used existing tools and methods in new ways to improve early identification of children with ASD and to make available evidence-based intervention services. This example should be replicable in other states with key stakeholders working collaboratively for the benefit of young children with ASD.
OBJECTIVE:Previous research on developmental regression in youth with autism spectrum disorders (ASD) has often been limited by the definition, assessment, and methodology used to evaluate and describe regression. This study sought to overcome these limitations by examining the prevalence, timing, and correlates of documented cases of developmental regression in a large, epidemiological sample of youth with ASD.METHOD:Utilizing a population-based surveillance methodology, this study includes 862 youth with ASD identified through abstraction and clinician record review.RESULTS:Approximately 21% of the sample had developmental regression documented in their medical or educational records with the mean age of regression being 24.2 ± 14.3 months. Youth with ASD and a history of regression were more likely to have comorbid intellectual disability, a prior community diagnosis of ASD, and be eligible for educational services as a student with autism. Youth with a documented history of regression also had higher rates of restricted, repetitive behaviors, such as stereotyped speech, nonfunctional routines/rituals, and sensory interests.CONCLUSION:Results suggest that youth with a history of regression are not only more likely to have comorbid intellectual disability but are also are more likely to have been previously diagnosed with ASD in the community, suggesting that development regression may play an important role in identifying children who are at the risk for ASD and need evaluation. Higher rates of restricted, repetitive behaviors in youth with a documented history of regression may also provide important insights into the relationship between ASD and developmental regression.
Purpose: Findings from the Centers for Disease Control and Prevention-sponsored Autism and Developmental Disabilities Monitoring (ADDM) network suggest a growing prevalence of autism spectrum disorders (ASDs). The rigorous ADDM record review methodology has provided valuable insight into the epidemiology of autism spectrum disorder (ASD), but recent studies using alternative methods have reported significantly higher prevalence estimates. The South Carolina Children's Educational Surveillance Study (SUCCESS) was designed to determine ASD prevalence via population-based screening and direct assessment and to compare prevalence results to ADDM and administrative prevalence counts. This article provides an overview of the methods used for this study.Methods: SUCCESS involved a novel (first in the United States) population-based screening approach combined with direct assessment to determine ASD prevalence.Results: SUCCESS results will be compared to those obtained via records-based surveillance (ADDM) and administrative counts in the same population of children. This article describes the methods for developing and implementing SUCCESS and rationale for major decisions. Procedures used to maximize participation and accurately determine case status are discussed. Study results will be available in 2016.Conclusions: Accurate reporting of ASD prevalence is important to researchers, health care providers, policy makers, and families. This study will clarify the findings of various methods used to estimate ASD prevalence. (C) 2016 Elsevier Inc. All rights reserved.
This nine-year-old girl with developmental regression, gait abnormality, and autism spectrum disorder presented for behavioral concerns. She had exhibited hyperactivity and global developmental regression since around age four years. Her ophthalmology examination revealed significantly decreased visual acuity and optic atrophy. She was hospitalized for visual hallucinations and withdrawn behavior shortly thereafter. Two months later, she developed staring episodes, and electroencephalography showed temporal sharp wave discharges, suggesting a partial seizure disorder. Her brain magnetic resonance imaging was normal. Repeat eye examination several months later confirmed a further decrease in visual acuity and revealed a cherry-red foveal spot and vascular attenuation in both eyes (Fig 1). At her most recent examination, visual acuity was poor but stable, and her fundoscopic examination showed a bull's eye maculopathy (Fig 2). Figure 2Bull's eye maculopathy. The arrow indicates the area of maculopathy. (The color version of this figure is available in the online edition.) View Large Image Figure Viewer Download Hi-res image
Autism spectrum disorders (ASD) often co-occur with intellectual disability (ID) and are associated with poorer psychosocial and family-related outcomes than ID alone. The present study examined the prevalence, stability, and characteristics of ASD estimates in 2,208 children with ASD and ID identified through the South Carolina Autism and Developmental Disabilities Network. The prevalence of ASD in ID was 18.04%, relative to ASD rates of 0.60%-1.11% reported in the general South Carolina population. Compared to children with ASD alone, those with comorbid ID exhibited increased symptom severity and distinct DSM-IV-TR profiles. Further work is needed to determine whether current screening, diagnostic, and treatment practices adequately address the unique needs of children and families affected by comorbid ASD and ID diagnoses.
This paper evaluated age differences in emergency department care and inpatient hospitalizations in 252 preadolescent and adolescent youth with autism spectrum disorders (ASDs; ages 9-18). Records from youth with ASDs were linked to acute care utilization records and were compared to a demographically similar comparison group of youth without ASDs (N = 1260). A particular focus was placed on utilization for psychiatric concerns and injuries or accidents. Results suggested that psychiatric care was more likely for youth with ASDs in both the preadolescent and adolescent cohorts versus comparison youth, with no significant differences between age cohorts. In contrast, results for the accident and injury categories suggested age-specific findings. Results suggest opportunities for prevention efforts for youth with ASDs.
OBJECTIVESThe purpose of this study was to identify rates and predictors of psychotropic medication polypharmacy among Medicaid-eligible children in South Carolina with autism spectrum disorder (ASD) from 2000 to 2008.METHODSPopulation-based surveillance data were linked with state Medicaid records to obtain a detailed demographic, behavioral, educational, clinical, and diagnostic data set for all Medicaid-eligible 8-year-old children (n=629) who were identified and diagnosed with ASD using standardized criteria. Polypharmacy was defined as having interclass psychotropic medication claims overlapping for ≥30 consecutive days at any time during the 2-year study period. Multivariable logistic regression was used to model predictors of any polypharmacy, and for the three most common combinations.RESULTSOverall, 60% (n=377) used any psychotropic medication, and 41% (n=153) of those had interclass polypharmacy. Common combinations were attention-deficit/hyperactivity disorder (ADHD) medications with an antidepressant (A/AD), antipsychotic (A/AP) or a mood stabilizer (A/MS). Black children had lower odds of any polypharmacy, as did those eligible for Medicaid because of income or being foster care versus those eligible because of disability. There were no significant associations between polypharmacy and social deficits in ASD for any combination, although children with communication deficits diagnostic of ASD had lower odds of any polypharmacy and A/AP polypharmacy. Children with argumentative, aggressive, hyperactive/impulsive, or self-injurious aberrant behaviors had higher odds of polypharmacy, as did children with diagnosed co-occurring ADHD, anxiety or mood disorders, or conduct/oppositional defiant disorder (ODD) in Medicaid records.CONCLUSIONSFuture research is warranted to investigate how child-level factors impact combination psychotropic medication prescribing practices and outcomes in ASD.
Medication adherence in children is poor, particularly among those with chronic or mental health disorders. However, adherence has not been fully assessed in autism spectrum disorders (ASDs). The validated proportion of days covered method was used to quantify adherence to psychotropic medication in Medicaid-eligible children who met diagnostic criteria for ASD between 2000 and 2008 (N = 628). Among children prescribed attention deficit hyperactivity disorder (ADHD) medications, antidepressants, or antipsychotics, 44, 40 and 52 % were adherent respectively. Aggressive behaviors and abnormalities in eating, drinking, and/or sleeping, co-occurring ADHD, and the Medication Regimen Complexity Index were the most significant predictors of adherence rather than demographics or core deficits of ASD. Identifying barriers to adherence in ASD may ultimately lead to improved treatment outcomes.
PROBLEM/CONDITION Autism spectrum disorder (ASD). PERIOD COVERED 2010. DESCRIPTION OF SYSTEM The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. RESULTS For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD. Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71-85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity. INTERPRETATION These findings from CDC's ADDM Network, which are based on 2010 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD in multiple communities in the United States. Because the ADDM Network sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States population. Consistent with previous reports from the ADDM Network, findings from the 2010 surveillance year were marked by significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual ability. The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear. PUBLIC HEALTH ACTION ADDM Network investigators will continue to monitor the prevalence of ASD in select communities, with a focus on exploring changes within these communities that might affect both the observed prevalence of ASD and population-based characteristics of children identified with ASD. Although ASD is sometimes diagnosed by 2 years of age, the median age of the first ASD diagnosis remains older than age 4 years in the ADDM Network communities. Recommendations from the ADDM Network include enhancing strategies to address the need for 1) standardized, widely adopted measures to document ASD severity and functional limitations associated with ASD diagnosis; 2) improved recognition and documentation of symptoms of ASD, particularly among both boys and girls, children without intellectual disability, and children in all racial/ethnic groups; and 3) decreasing the age when children receive their first evaluation for and a diagnosis of ASD and are enrolled in community-based support systems.