Amy M. Daniels

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

The diagnosis of autism is often delayed, which translates into a missed opportunity to provide treatment during a critical developmental period. This study reviews studies that assessed factors associated with age at autism spectrum disorder diagnosis and provides recommendations on future research, programs, and policies to improve early detection. A search for all peer-reviewed articles containing the words autism, age, and diagnosis in either the title or abstract was performed. A total of 42 studies published from January 1990 through March 2012 were identified. Mean age at diagnosis for all autism spectrum disorders ranged from 38 to 120 months and has decreased over time. Factors associated with earlier diagnosis included greater symptom severity, high socioeconomic status, and greater parental concern about initial symptoms. Family interactions with the health and education systems prior to diagnosis also influenced age at diagnosis. Geographic variation in age at autism spectrum disorder diagnosis was identified in a number of studies, suggesting that community resources and state policies play a role in early identification. Early detection efforts should include enhanced parental and provider education on the early recognition of developmental problems, interventions aimed at streamlining the process from first concern to eventual diagnosis, and strategies that target underserved populations.

The human impact of earthquakes: a historical review of events 1980-2009 and systematic literature review

Introduction. Although rare, tsunamis have the potential to cause considerable loss of life and injury as well as widespread damage to the natural and built environments. The objectives of this review were to describe the impact of tsunamis on human populations in terms of mortality, injury, and displacement and, to the extent possible, identify risk factors associated with these outcomes. This is one of five reviews on the human impact of natural disasters. Methods. Data on the impact of tsunamis were compiled using two methods, a historical review from 1900 to mid 2009 of tsunami events from multiple databases and a systematic literature review to October 2012 of publications. Analysis included descriptive statistics and bivariate tests for associations between tsunami mortality and characteristics using STATA 11. Findings. There were 255,195 deaths (range 252,619-275,784) and 48,462 injuries (range 45,466-51,457) as a result of tsunamis from 1900 to 2009. The majority of deaths (89%) and injuries reported during this time period were attributed to a single event –the 2004 Indian Ocean tsunami. Findings from the systematic literature review indicate that the primary cause of tsunami-related mortality is drowning, and that females, children and the elderly are at increased mortality risk. The few studies that reported on tsunami-related injury suggest that males and young adults are at increased injury-risk. Conclusions. Early warning systems may help mitigate tsunami-related loss of life.

Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority

One of the most consistent findings in autism spectrum disorder (ASD) research is a higher rate of ASD diagnosis in males than females. Despite this, remarkably little research has focused on the reasons for this disparity. Better understanding of this sex difference could lead to major advancements in the prevention or treatment of ASD in both males and females. In October of 2014, Autism Speaks and the Autism Science Foundation co-organized a meeting that brought together almost 60 clinicians, researchers, parents, and self-identified autistic individuals. Discussion at the meeting is summarized here with recommendations on directions of future research endeavors.

Trends in Autism Spectrum Disorder Diagnoses: 1994-2007.

We analyzed predictors of parent-reported initial diagnosis (autistic disorder [AD], pervasive developmental disorder-not otherwise specified [PDD-NOS], pervasive developmental disorder [‘PDD’] and autism spectrum disorder [‘ASD’], and Asperger syndrome [AS]), among 6,176 individuals with autism spectrum disorders diagnosed from 1994 through 2007. Overall, distribution of diagnoses was influenced by a secular time trend factor; other significant factors included ethnicity, white race, geographic location, urbanicity, and initial evaluator. Since 2001, most initial diagnoses of AD and AS have remained steady while ‘PDD’ and PDD-NOS have decreased. ‘ASD’ diagnoses have increased, especially among school-based teams; AS diagnoses also increased uniquely among these evaluators. Findings from this study suggest that current diagnostic guidelines may not be meeting all community evaluator needs.

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.

Stability of initial autism spectrum disorder diagnoses in community settings.

The study’s objectives were to assess diagnostic stability of initial autism spectrum disorder (ASD) diagnoses in community settings and identify factors associated with diagnostic instability using data from a national Web-based autism registry. A Cox proportional hazards model was used to assess the relative risk of change in initial ASD diagnosis as a function of demographic characteristics, diagnostic subtype, environmental factors and natural history. Autistic disorder was the most stable initial diagnosis; pervasive developmental disorder—not otherwise specified was the least stable. Additional factors such as diagnosing clinician, region, when in time a child was initially diagnosed, and history of autistic regression also were significantly associated with diagnostic stability in community settings. Findings suggest that the present classification system and other secular factors may be contributing to increasing instability of community-assigned labels of ASD.

Approaches to Enhancing the Early Detection of Autism Spectrum Disorders: A Systematic Review of the Literature

BACKGROUND A reliable diagnosis of autism can be made as early as 24 months, yet in many children diagnoses are made much later. A delay in diagnosis translates into a missed opportunity to provide early intervention services and to improve outcomes. The aim of the current study was to review the literature on early detection approaches in primary care and other community settings in the United States. METHODS A search was conducted of the peer-reviewed and gray literature to identify studies published from January 1990 through January 2013 testing approaches to enhance the early detection of autism in community settings in the United States. RESULTS The search identified 40 studies describing 35 approaches, which were grouped into the following categories: awareness (n = 4), routine screening (n = 21), and practice improvement to enhance screening (n = 10). Awareness approaches were associated with positive changes in knowledge of autism-related topics. Routine screening yielded high or increased rates of screening and referrals; however, few studies assessed the effect of screening on age at diagnosis or services enrollment. Practice improvement approaches resulted in increased screening and referral rates and highlighted the importance of adopting a multipronged approach to enhance early detection. CONCLUSIONS Although studies that tested screening approaches in community settings found positive results, the effectiveness of such efforts on reducing time to diagnosis and services enrollment remains largely untested. The fact that few studies reported outcomes beyond rates of referral indicates the need for enhanced methodological rigor, particularly with respect to length of follow-up and quality of measures used.

Treated prevalence of and mental health services received by children and adolescents in 42 low‐and‐middle‐income countries

BACKGROUND Little is known about the treated prevalence and services received by children and adolescents in low- and middle-income countries (LAMICs). The purpose of this study is to describe the characteristics and capacity of mental health services for children and adolescents in 42 LAMICs. METHODS The World Health Organization Assessment Instrument for Mental Health Systems (WHO-AIMS), a 155-indicator instrument developed to assess key components of mental health service systems, was used to describe mental health services in 13 low, 24 lower-middle, and 5 upper-middle-income countries. Child and adolescent service indicators used in the analysis were drawn from Domains 2 (mental health services), 4 (human resources), and 5 (links with other sectors) of the WHO-AIMS instrument. RESULTS The median one-year treated prevalence for children and adolescents is 159 per 100,000 population compared to a treated prevalence of 664 per 100,000 for the adult population. Children and adolescents make up 12% of the patient population in mental health outpatient facilities and less than 6% in all other types of mental health facilities. Less than 1% of beds in inpatient facilities are reserved for children and adolescents. Training provided for mental health professionals on child and adolescent mental health is minimal, with less than 1% receiving refresher training. Most countries (76%) organize educational campaigns on child and adolescent mental health. CONCLUSIONS Mental health services for children and adolescents in low- and middle-income countries are extremely scarce and greatly limit access to appropriate care. Scaling up of services resources will be necessary in order to meet the objectives of the WHO Mental Health Gap Action (mhGAP) program which identifies increased services for the treatment of child mental disorders as a priority.

The human impact of tropical cyclones: a historical review of events 1980-2009 and systematic literature review

Background. Cyclones have significantly affected populations in Southeast Asia, the Western Pacific, and the Americas over the past quarter of a century. Future vulnerability to cyclones will increase due to factors including population growth, urbanization, increasing coastal settlement, and global warming. The objectives of this review were to describe the impact of cyclones on human populations in terms of mortality, injury, and displacement and, to the extent possible, identify risk factors associated with these outcomes. This is one of five reviews on the human impact of natural disasters. Methods. Data on the impact of cyclones were compiled using two methods, a historical review from 1980 to 2009 of cyclone events from multiple databases and a systematic literature review of publications ending in October 2012. Analysis included descriptive statistics and bivariate tests for associations between cyclone characteristics and mortality using Stata 11.0. Findings. There were 412,644 deaths, 290,654 injured, and 466.1 million people affected by cyclones between 1980 and 2009, and the mortality and injury burden was concentrated in less developed nations of Southeast Asia and the Western Pacific. Inconsistent reporting suggests this is an underestimate, particularly in terms of the injured and affected populations. The primary cause of cyclone-related mortality is drowning; in developed countries male gender was associated with increased mortality risk, whereas females experienced higher mortality in less developed countries. Conclusions. Additional attention to preparedness and early warning, particularly in Asia, can lessen the impact of future cyclones.

Impact of the 2007 Ica Earthquake on Health Facilities and Health Service Provision in Southern Peru

INTRODUCTION Few studies have examined post-disaster coping abilities of health facilities and hospitals. On 15 August 2007, a 7.9 (Richter) earthquake struck off the western coast of Peru near the Department of Ica that devastated the healthcare infrastructure. The impact of the earthquake on the health facilities in the four most affected provinces (Cañete, Chincha, Ica, and Pisco), the risk factors associated with the damages incurred, ability to provide services, and humanitarian assistance received were assessed. METHODS A stratified, systematic sampling design was used to interview a sample of 40 health facilities. The most senior healthcare provider at each facility was interviewed about the facilitys experience with service provision following the earthquake. RESULTS Sixty percent of the facilities reported some damage due to the earthquake; four (10%) were completely destroyed. A total of 78% of the facilities reported providing medical care within the first 48 hours after the earthquake and public facilities were more likely to remain open than were private facilities (p = 0.030). Facilities with an emergency response plan were more likely to provide services than were those without a plan (p = 0.043). Six months after the earthquake, similar numbers of HIV and tuberculosis (TB) patients were receiving treatment at the sampled facilities as prior to the earthquake, and no difficulties were reported in obtaining medications. Some form of assistance, most commonly medications, was received by 60% of the facilities; receipt of assistance was not associated with the facility type, location, damage incurred, or post-disaster service provision. CONCLUSIONS Response plans were an important factor in the ability to provide services immediately following an earthquake. While a facilitys ability to provide services can be determined by structural impacts of the precipitating event, response plans help the staff to continue to provide services and care for affected populations, and appropriately arrange referrals when care cannot be provided at the facility. The findings suggest that health facilities in disasterprone areas should invest in developing and implementing disaster response plans in order to improve health service provision capacity during disasters.