David S. Mandell

Factors Associated With Age of Diagnosis Among Children With Autism Spectrum Disorders

Objective. Early diagnosis of children with autism spectrum disorders (ASD) is critical but often delayed until school age. Few studies have identified factors that may delay diagnosis. This study attempted to identify these factors among a community sample of children with ASD. Methods. Survey data were collected in Pennsylvania from 969 caregivers of children who had ASD and were younger than 21 years regarding their service experiences. Linear regression was used to identify clinical and demographic characteristics associated with age of diagnosis. Results. The average age of diagnosis was 3.1 years for children with autistic disorder, 3.9 years for pervasive developmental disorder not otherwise specified, and 7.2 years for Aspergers disorder. The average age of diagnosis increased 0.2 years for each year of age. Rural children received a diagnosis 0.4 years later than urban children. Near-poor children received a diagnosis 0.9 years later than those with incomes >100% above the poverty level. Children with severe language deficits received a diagnosis an average of 1.2 years earlier than other children. Hand flapping, toe walking, and sustained odd play were associated with a decrease in the age of diagnosis, whereas oversensitivity to pain and hearing impairment were associated with an increase. Children who had 4 or more primary care physicians before diagnosis received a diagnosis 0.5 years later than other children, whereas those whose pediatricians referred them to a specialist received a diagnosis 0.3 years sooner. Conclusion. These findings suggest improvements over time in decreasing the age at which children with ASD, especially higher functioning children, receive a diagnosis. They also suggest a lack of resources in rural areas and for near-poor families and the importance of continuous pediatric care and specialty referrals. That only certain ASD-related behaviors, some of which are not required to satisfy diagnostic criteria, decreased the age of diagnosis suggests the importance of continued physician education.

Race differences in the age at diagnosis among medicaid-eligible children with autism.

OBJECTIVE To examine racial differences in the age at which Medicaid-eligible children first receive an autistic disorder (AD) diagnosis and to examine time in mental health treatment until an AD diagnosis was received. METHOD Philadelphia Medicaid specialty mental health claims identified 406 children who received services in 1999 for AD. Claims from 1993-1999 were used to identify the date of first mental health visit, first receipt of AD diagnosis, and number of visits occurring between those dates. Linear regression was used to examine the relationship among race, age at first diagnosis of AD, time in mental health treatment, and number of visits until the diagnosis was made. RESULTS On average, white children received the AD diagnosis at 6.3 years of age, compared with 7.9 years for black children (p <.001). White children entered the mental health system at an earlier age (6.0 versus 7.1 years, p =.005); however, after adjusting for age, sex, and time eligible for Medicaid, black children required more time in treatment before receiving the diagnosis. CONCLUSIONS Important disparities exist in the early detection and treatment of autism. These disparities may be the result of differences in help-seeking, advocacy and support, and clinician behaviors.

Costs of Autism Spectrum Disorders in the United Kingdom and the United States

IMPORTANCE The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings. OBJECTIVE To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs. DESIGN, SETTING, AND PARTICIPANTS A literature review was conducted of US and UK studies on individuals with ASDs and their families in October 2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, and economics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support, opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability. EXPOSURE Presence of ASDs. MAIN OUTCOMES AND MEASURES Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom. RESULTS The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was

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

2.4 million in the United States and £1.5 million (US

Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory.

2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was

Psychotropic Medication Use Among Medicaid-Enrolled Children With Autism Spectrum Disorders

1.4 million in the United States and £0.92 million (US

Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder.

1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children. CONCLUSIONS AND RELEVANCE The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.

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

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.

Explaining differences in age at autism spectrum disorder diagnosis: A critical review

There is growing evidence that efficacious interventions for autism are rarely adopted or successfully implemented in public mental health and education systems. We propose applying diffusion of innovation theory to further our understanding of why this is the case. We pose a practical set of questions that administrators face as they decide about the use of interventions. Using literature from autism intervention and dissemination science, we describe reasons why efficacious interventions for autism are rarely adopted, implemented, and maintained in community settings, all revolving around the perceived fit between the intervention and the needs and capacities of the setting. Finally, we suggest strategies for intervention development that may increase the probability that these interventions will be used in real-world settings.

Implications of Childhood Autism for Parental Employment and Earnings

OBJECTIVE. The objective of this study was to provide national estimates of psychotropic medication use among Medicaid-enrolled children with autism spectrum disorders and to examine child and health system characteristics associated with psychotropic medication use. METHODS. This cross-sectional study used Medicaid claims for calendar year 2001 from all 50 states and Washington, DC, to examine 60641 children with an autism spectrum disorder diagnosis. Logistic regression with random effects was used to examine the child, county, and state factors associated with psychotropic medication use. RESULTS. Of the sample, 56% used at least 1 psychotropic medication, 20% of whom were prescribed ≥3 medications concurrently. Use was common even in children aged 0 to 2 years (18%) and 3 to 5 years (32%). Neuroleptic drugs were the most common psychotropic class (31%), followed by antidepressants (25%) and stimulants (22%). In adjusted analyses, male, older, and white children; those who were in foster care or in the Medicaid disability category; those who received additional psychiatric diagnoses; and those who used more autism spectrum disorder services were more likely to have used psychotropic drugs. Children who had a diagnosis of autistic disorder or who lived in counties with a lower percentage of white residents or greater urban density were less likely to use such medications. CONCLUSIONS. Psychotropic medication use is common among even very young children with autism spectrum disorders. Factors unrelated to clinical presentation seem highly associated with prescribing practices. Given the limited evidence base, there is an urgent need to assess the risks, benefits, and costs of medication use and understand the local and national policies that affect medication use.