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1.  Non-Specialist Psychosocial Interventions for Children and Adolescents with Intellectual Disability or Lower-Functioning Autism Spectrum Disorders: A Systematic Review 
PLoS Medicine  2013;10(12):e1001572.
In a systematic review, Brian Reichow and colleagues assess the evidence that non-specialist care providers in community settings can provide effective interventions for children and adolescents with intellectual disabilities or lower-functioning autism spectrum disorders.
Please see later in the article for the Editors' Summary
Background
The development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities or lower-functioning autism spectrum disorders delivered by non-specialist care providers in community settings produce benefits when compared to either a no-treatment control group or treatment-as-usual comparator.
Methods and Findings
We systematically searched electronic databases through 24 June 2013 to locate prospective controlled studies of psychosocial interventions delivered by non-specialist providers to children with intellectual disabilities or lower-functioning autism spectrum disorders. We screened 234 full papers, of which 34 articles describing 29 studies involving 1,305 participants were included. A majority of the studies included children exclusively with a diagnosis of lower-functioning autism spectrum disorders (15 of 29, 52%). Fifteen of twenty-nine studies (52%) were randomized controlled trials and just under half of all effect sizes (29 of 59, 49%) were greater than 0.50, of which 18 (62%) were statistically significant. For behavior analytic interventions, the best outcomes were shown for development and daily skills; cognitive rehabilitation, training, and support interventions were found to be most effective for improving developmental outcomes, and parent training interventions to be most effective for improving developmental, behavioral, and family outcomes. We also conducted additional subgroup analyses using harvest plots. Limitations include the studies' potential for performance bias and that few were conducted in lower- and middle-income countries.
Conclusions
The findings of this review support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or lower-functioning autism spectrum disorders. Given the scarcity of specialists in many low-resource settings, including many lower- and middle-income countries, these findings may provide guidance for scale-up efforts for improving outcomes for children with developmental disorders or lower-functioning autism spectrum disorders.
Protocol Registration
PROSPERO CRD42012002641
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Newborn babies are helpless, but over the first few years of life, they acquire motor (movement) skills, language (communication) skills, cognitive (thinking) skills, and social (interpersonal interaction) skills. Individual aspects of these skills are usually acquired at specific ages, but children with a development disorder such as an autism spectrum disorder (ASD) or intellectual disability (mental retardation) fail to reach these “milestones” because of impaired or delayed brain maturation. Autism, Asperger syndrome, and other ASDs (also called pervasive developmental disorders) affect about 1% of the UK and US populations and are characterized by abnormalities in interactions and communication with other people (reciprocal socio-communicative interactions; for example, some children with autism reject physical affection and fail to develop useful speech) and a restricted, stereotyped, repetitive repertoire of interests (for example, obsessive accumulation of facts about unusual topics). About half of individuals with an ASD also have an intellectual disability—a reduced overall level of intelligence characterized by impairment of the skills that are normally acquired during early life. Such individuals have what is called lower-functioning ASD.
Why Was This Study Done?
Most of the children affected by developmental disorders live in low- and middle-income countries where there are few services available to help them achieve their full potential and where little research has been done to identify the most effective treatments. The development of effective treatments for use by non-specialists (for example, teachers and parents) is necessary to improve the lives of people with mental illnesses worldwide, but particularly in resource-limited settings where psychiatrists, psychologists, and other specialists are scarce. In this systematic review, the researchers investigated which psychosocial interventions for children and adolescents with intellectual disabilities or lower-functioning ASDs delivered by non-specialist providers in community settings produce improvements in development, daily skills, school performance, behavior, or family outcomes when compared to usual care (the control condition). A systematic review identifies all the research on a given topic using predefined criteria; psychosocial interventions are defined as therapy, education, training, or support aimed at improving behavior, overall development, or specific life skills without the use of drugs.
What Did the Researchers Do and Find?
The researchers identified 29 controlled studies (investigations with an intervention group and a control group) that examined the effects of various psychosocial interventions delivered by non-specialist providers to children (under 18 years old) who had a lower-functioning ASD or intellectual disability. The researchers retrieved information on the participants, design and methods, findings, and intervention characteristics for each study, and calculated effect sizes—a measure of the effectiveness of a test intervention relative to a control intervention—for several outcomes for each intervention. Across the studies, three-quarters of the effect size estimates were positive, and nearly half were greater than 0.50; effect sizes of less than 0.2, 0.2–0.5, and greater than 0.5 indicate that an intervention has no, a small, or a medium-to-large effect, respectively. For behavior analytic interventions (which aim to improve socially significant behavior by systematically analyzing behavior), the largest effect sizes were seen for development and daily skills. Cognitive rehabilitation, training, and support (interventions that facilitates the relearning of lost or altered cognitive skills) produced good improvements in developmental outcomes such as standardized IQ tests in children aged 6–11 years old. Finally, parental training interventions (which teach parents how to provide therapy services for their child) had strong effects on developmental, behavioral, and family outcomes.
What Do These Findings Mean?
Because few of the studies included in this systematic review were undertaken in low- and middle-income countries, the review's findings may not be generalizable to children living in resource-limited settings. Moreover, other characteristics of the included studies may limit the accuracy of these findings. Nevertheless, these findings support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or a lower-functioning ASD, and indicate which interventions are likely to produce the largest improvements in developmental, behavioral, and family outcomes. Further studies are needed, particularly in low- and middle-income countries, to confirm these findings, but given that specialists are scarce in many resource-limited settings, these findings may help to inform the implementation of programs to improve outcomes for children with intellectual disabilities or lower-functioning ASDs in low- and middle-income countries.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001572.
This study is further discussed in a PLOS Medicine Perspective by Bello-Mojeed and Bakare
The US Centers for Disease Control and Prevention provides information (in English and Spanish) on developmental disabilities, including autism spectrum disorders and intellectual disability
The US National Institute of Mental Health also provides detailed information about autism spectrum disorders, including the publication “A Parent's Guide to Autism Spectrum Disorder”
Autism Speaks, a US non-profit organization, provides information about all aspects of autism spectrum disorders and includes information on the Autism Speaks Global Autism Public Health Initiative
The National Autistic Society, a UK charity, provides information about all aspects of autism spectrum disorders and includes personal stories about living with these conditions
The UK National Health Service Choices website has an interactive guide to child development and information about autism and Asperger syndrome, including personal stories, and about learning disabilities
The UK National Institute for Health and Care Excellence provides clinical guidelines for the management and support of children with autism spectrum disorders
The World Health Organization provides information on its Mental Health Gap Action Programme (mhGAP), which includes recommendations on the management of developmental disorders by non-specialist providers; the mhGAP Evidence Resource Center provides evidence reviews for parent skills training for management of children with intellectual disabilities and pervasive developmental disorders and interventions for management of children with intellectual disabilities
PROSPERO, an international prospective register of systematic reviews, provides more information about this systematic review
doi:10.1371/journal.pmed.1001572
PMCID: PMC3866092  PMID: 24358029
2.  Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders 
BMC Psychiatry  2009;9:35.
Background
Individuals with autism spectrum disorders (ASDs) often display symptoms from other diagnostic categories. Studies of clinical and psychosocial outcome in adult patients with ASDs without concomitant intellectual disability are few. The objective of this paper is to describe the clinical psychiatric presentation and important outcome measures of a large group of normal-intelligence adult patients with ASDs.
Methods
Autistic symptomatology according to the DSM-IV-criteria and the Gillberg & Gillberg research criteria, patterns of comorbid psychopathology and psychosocial outcome were assessed in 122 consecutively referred adults with normal intelligence ASDs. The subjects consisted of 5 patients with autistic disorder (AD), 67 with Asperger's disorder (AS) and 50 with pervasive developmental disorder not otherwise specified (PDD NOS). This study group consists of subjects pooled from two studies with highly similar protocols, all seen on an outpatient basis by one of three clinicians.
Results
Core autistic symptoms were highly prevalent in all ASD subgroups. Though AD subjects had the most pervasive problems, restrictions in non-verbal communication were common across all three subgroups and, contrary to current DSM criteria, so were verbal communication deficits. Lifetime psychiatric axis I comorbidity was very common, most notably mood and anxiety disorders, but also ADHD and psychotic disorders. The frequency of these diagnoses did not differ between the ASD subgroups or between males and females. Antisocial personality disorder and substance abuse were more common in the PDD NOS group. Of all subjects, few led an independent life and very few had ever had a long-term relationship. Female subjects more often reported having been bullied at school than male subjects.
Conclusion
ASDs are clinical syndromes characterized by impaired social interaction and non-verbal communication in adulthood as well as in childhood. They also carry a high risk for co-existing mental health problems from a broad spectrum of disorders and for unfavourable psychosocial life circumstances. For the next revision of DSM, our findings especially stress the importance of careful examination of the exclusion criterion for adult patients with ASDs.
doi:10.1186/1471-244X-9-35
PMCID: PMC2705351  PMID: 19515234
3.  Access to specialty care in autism spectrum disorders-a pilot study of referral source 
Background
In the United States, a medical home model has been shown to improve the outcomes for children with special health care needs. As part of this model, primary care physicians provide comprehensive medical care that includes identification of delayed and/or atypical development in children and coordination of care with specialists. However, it is not clear if families of children with Autism Spectrum Disorder (ASD) rely on the medical home model for care of their child to the same extent as families of children with other special health care needs. This study aims to add to the understanding of medical care for children with ASD by examining the referral source for specialty care.
Methods
This retrospective study was accomplished by evaluating parent completed intake data for children with ASD compared to those with other neurological disorders in a single physician Pediatric Neurology Practice at a major urban medical center in Northern New Jersey. To account for referral bias, a similar comparison study was conducted using a multispecialty ASD practice at the same medical center. Parent reported "source of referral" and "reason for the referral" of 189 ASD children and 108 non-ASD neurological disordered children were analyzed.
Results
The specialty evaluations of ASD were predominantly parent initiated. There were significantly less referrals received from primary care physicians for children with ASD compared to children with other neurodevelopmental disorders. Requirement of an insurance referral was not associated with a primary care physician prompted specialty visit.We identified different patterns of referral to our specialty clinics for children with ASD vs. children with other neurolodevelopmental disorders.
Conclusion
The majority of the families of children with ASD evaluated at our autism center did not indicate that a primary care physician initiated the specialty referral. This study suggests that families of children with ASD interface differently with the primary care provider than families of children with other neurological disorders.
doi:10.1186/1472-6963-11-99
PMCID: PMC3117687  PMID: 21569571
4.  Heavy Metals and Trace Elements in Hair and Urine of a Sample of Arab Children with Autistic Spectrum Disorder 
Mædica  2011;6(4):247-257.
ABSTRACT
General information: Autism is a severe developmental disorder which involves social withdrawal, communication deficits, and stereotypic/repetitive behavior. The pathophysiological etiologies which precipitate autism symptoms remain elusive and controversial in many cases, but both genetic and environmental factors (and their interactions) have been implicated. While autism is considered multicausal, environmental factors have received significant attention. International discussion has ocused on neurotoxins such as mercury and lead, suggesting that these and other toxic metals contribute to the development of the disorder. An epidemiological study released in 2006 (Palmer et al.) linking Toxic Release Inventory (TRI) data on mercury to special education data in Texas reported a 61% increase in autism prevalence rates (or 17% adjusted) per 1000 pounds of mercury released into the environment (1). We attempted to further evaluate whether exposure to variable environmental contributes to the genesis of autistic spectrum disorder, and thus is a factor increasing the risk for developing autism symptoms in utero or in early childhood.
Purpose: The purpose of this study is to examine possible environmental risk factors and sources of exposure to mercury and other heavy metals in children with autism spectrum disorder versus controls. Through laboratory diagnostics we are able to distinguish between present and past exposure (i.e. hair analysis measurements reflect past exposure), urinary excretion levels of unprovoked urine represent immediate exposure. By assessing a spectrum of trace elements and heavy metals in hair and urine of both autistic and control groups, we focused on the participants≈ past and present exposure.
Methodology: The participants were 25 Autistic Spectrum Disorder (ASD) children (22 boys and 3 girls) between the age of 3 and 9 years. They were either diagnosed previously by other psychiatrist, psychologist, and developmental pediatrician or suspected by their parents as being autistic. All children were attendants to the Child Psychiatric Clinic in Erfan Psychiatric Hospital in Jeddah, KSA. Samples were collected during the period of June 2006 to March 2008. A control group of 25 children without any psychiatric or medical disorders was age-matched and sex-matched. All parents signed informed consent forms. All autistic children were subjected to a full clinical child psychiatric sheet for the diagnosis of autism spectrum disorder and exclusion of other psychiatric disorders according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM IV). The severity of autistic symptomatology was measured by the Childhood Autism Rating Scale (CARS) and Autism Behavior Checklist (ABC) using the Arabic versions. Both groups were subjected to the Questionnaire on Exposure to Heavy Metals, Physical Symptoms, and Child Development. Hair and baseline urine samples (i.e. unprovoked urine) were taken from both groups and sent to the German clinical and environmental laboratory Micro Trace Minerals Gmbh, for the detection of heavy metals and trace elements levels where metal testing was performed via ICP-MS spectroscopy utilizing cell technique.
Results: By comparing the ASD Group to the Control Group, we found a statistically significant difference in the mean hair levels of arsenic, cadmium, barium, cerium and lead (p=0.01, 0.03, 0.003, 0.003, and 0.03 respectively), and in the mean hair levels of magnesium and zinc (p=0.001 and 0.003 respectively). There were also statistically significant differences in the mean urine levels of aluminum, barium, cerium, mercury, and lead (p=0.004, 002, 0.014, 0.006 and 0.004 respectively), and in the mean urine levels of copper and germanium (p=0.049 and 0.02 respectively). An agreement was found in both specimen (hair and urine) for barium and lead. The statistically significant differences in mean hair levels of arsenic, cadmium, and cerium were not supported by urine baseline levels. Also, the statistically significant magnesium and zinc levels of hair were not supported by urine levels. A disagreement was also found with copper and germanium concentrations.
PMCID: PMC3391939  PMID: 22879836
micronucleus; nucleoplasmic bridges; colon cancer
5.  ASD, a Psychiatric Disorder, or Both? Psychiatric Diagnoses in Adolescents with High-Functioning ASD 
Objective
Varied presentations of emotion dysregulation in autism complicate diagnostic decision making and may lead to inaccurate psychiatric diagnoses or delayed autism diagnosis for high-functioning children. This pilot study aimed to determine the concordance between prior psychiatric diagnoses and the results of an autism-specific psychiatric interview in adolescents with high-functioning autism.
Methods
Participants included 35, predominantly Caucasian and male, verbal 10 – 17 year olds with a confirmed autism spectrum disorder and without intellectual disability. The average age of autism spectrum diagnosis was 11-years-old. Lifetime psychiatric diagnoses were established via the Autism Comorbidity Interview, developed to identify co-morbid conditions within the context of autism. Autism Comorbidity Interview results were compared to parent report of prior community psychiatric diagnoses.
Results
Approximately 60% of prior psychiatric diagnoses were not supported on the Autism Comorbidity Interview; the lowest diagnostic concordance was for prior bipolar disorder and obsessive-compulsive disorder diagnoses. While 51% of children met Autism Comorbidity Interview criteria for at least one psychiatric disorder, rates of prior diagnoses were much higher, with 77% having at least one prior psychiatric diagnosis and 60% having two or more.
Conclusions
Although many participants met criteria for comorbid psychiatric disorders, the majority of previous psychiatric diagnoses were not supported when autism-related manifestations were systematically taken into account. These findings require replication and may not generalize to lower-functioning and earlier diagnosed children with ASD. Results emphasize the importance of increasing awareness of the manifestations of high-functioning autism in order to improve accuracy of diagnosis and appropriateness of interventions.
doi:10.1080/15374416.2012.686102
PMCID: PMC3601822  PMID: 22642847
Autism; Asperger’s Disorder; Psychiatric Comorbidity; Diagnosis
6.  Road Trauma in Teenage Male Youth with Childhood Disruptive Behavior Disorders: A Population Based Analysis 
PLoS Medicine  2010;7(11):e1000369.
Donald Redelmeier and colleagues conducted a population-based case-control study of 16-19-year-old males hospitalized for road trauma or appendicitis and showed that disruptive behavior disorders explained a significant amount of road trauma in this group.
Background
Teenage male drivers contribute to a large number of serious road crashes despite low rates of driving and excellent physical health. We examined the amount of road trauma involving teenage male youth that might be explained by prior disruptive behavior disorders (attention deficit hyperactivity disorder, conduct disorder, oppositional defiant disorder).
Methods and Findings
We conducted a population-based case-control study of consecutive male youth between age 16 and 19 years hospitalized for road trauma (cases) or appendicitis (controls) in Ontario, Canada over 7 years (April 1, 2002 through March 31, 2009). Using universal health care databases, we identified prior psychiatric diagnoses for each individual during the decade before admission. Overall, a total of 3,421 patients were admitted for road trauma (cases) and 3,812 for appendicitis (controls). A history of disruptive behavior disorders was significantly more frequent among trauma patients than controls (767 of 3,421 versus 664 of 3,812), equal to a one-third increase in the relative risk of road trauma (odds ratio  =  1.37, 95% confidence interval 1.22–1.54, p<0.001). The risk was evident over a range of settings and after adjustment for measured confounders (odds ratio 1.38, 95% confidence interval 1.21–1.56, p<0.001). The risk explained about one-in-20 crashes, was apparent years before the event, extended to those who died, and persisted among those involved as pedestrians.
Conclusions
Disruptive behavior disorders explain a significant amount of road trauma in teenage male youth. Programs addressing such disorders should be considered to prevent injuries.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In the latest World Health Organization (WHO) global burden of disease list, road traffic crashes are currently ranked eighth but are predicted to take fourth place by 2030 (by which time, road traffic deaths are likely to increase by more than 80% in developing countries and to decrease by nearly 30% in industrialized countries.) Every year, road traffic crashes kill an estimated 1.2 million people world-wide and injure or disable a further 20–60 million. Furthermore, the economic consequences of road traffic crashes account for about 2% of the gross national product of the entire global economy.
90% of road traffic deaths occur in developing countries where pedestrians, cyclists, and users of two-wheel vehicles (scooters, motorbikes) are the most vulnerable. In industrialized countries, teenage male drivers are the single most risky demographic group, with an incidence of road traffic crashes of twice that of the population average. Also, male teenagers are sometimes a hazard to other road users and contribute to more fatalities in older pedestrians than older drivers. Furthermore, teenage male drivers involved in serious crashes can have ongoing health care needs but are often resistant to standard road safety advice.
Why Was This Study Done?
Previous studies have suggested that disruptive behavior disorders might contribute to the risk of road traffic crashes in male teenagers but methodological problems with these studies make these results unclear. Given the importance of this topic, authorities have called for more research into the full range of behavioral disorders and relevant populations. This study attempted to avoid the methodological problems of previous studies and to rigorously assess whether disruptive behavior disorders predispose male teenagers to road traffic crashes.
What Did the Researchers Do and Find?
The researchers conducted a 7-year population-based case-control study in Ontario, Canada of consecutive male teenagers aged between 16 and 19 years who were admitted to a hospital due to a road traffic crash, including those who were pedestrians. For the controls, the researchers used consecutive males in the same age range who were admitted to the same hospitals during the same time interval for acute appendicitis (which is common and generally unrelated to traumatic injury). For each participant in the study, the authors used universal health care databases in Canada's single-payer health care system to identify relevant psychiatric diagnoses (attention deficit hyperactivity disorder, conduct disorder, and oppositional defiant disorder) during the decade before admission.
During the study period, 3,421 male teenagers were admitted to hospital as the result of a road traffic crash and 3,812 male teenagers were admitted to hospital for appendicitis. A history of disruptive behavior disorders was significantly more frequent among male teenagers admitted for road traffic crashes than controls (767 of 3,421 versus 664 of 3,812) giving an odds ratio 1.37. This higher risk was still present after the researchers adjusted for possible confounding factors (such as age, social status, and home location) and accounted for about one-in-20 road traffic crashes, including male teenagers who had died and those involved as pedestrians.
What Do These Findings Mean?
The results of this study suggest that disruptive behavior disorders explain a significant amount of road traffic crashes experienced in male teenagers. Overall, attention deficit hyperactivity disorder, conduct disorder, and oppositional defiant disorder are associated with about a one-third increase in the risk of a road traffic crash (which is similar to the relative risk among individuals treated for epilepsy.) As in previous studies in this area, some methodological problems may affect the interpretation of these findings. As this study did not document who was “at fault,” an alternative interpretation might be that behavioral disorders impair a teenager's ability to avoid a mishap initiated by someone else. Most importantly, the observed increase in risk as pedestrians indicates that male teenagers who abstain from driving do not escape the danger of road traffic crashes.
The researchers stress that any increased risk of road traffic crashes associated with disruptive behavior disorders in male teenagers does not justify withholding a driver's license, especially as many such disorders can be effectively treated or, indeed, because it does not address the issue of the increased risk for those teenagers who were pedestrians. Instead, they suggest that disruptive behavior disorders could be considered as contributors to road traffic crashes—analogous to seizure disorders and some other medical diseases. Therefore, greater attention by primary care physicians, psychiatrists, and community health workers might be helpful since interventions can perhaps reduce the risk including medical treatments and avoidance of distractions.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000369.
The World Health Organization has information on road traffic crashes
The US National Institutes of Health has information about behavior disorders in children as well as UK-based Kids Development
The Ontarion Ministry of Transportation has information on annual roadway collisions in Ontario
doi:10.1371/journal.pmed.1000369
PMCID: PMC2981585  PMID: 21125017
7.  Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study 
PLoS ONE  2010;5(7):e11551.
Background
This study was designed to evaluate the hypothesis that the prevalence of autism spectrum disorder (ASD) among children in the United States is positively associated with socioeconomic status (SES).
Methods
A cross-sectional study was implemented with data from the Autism and Developmental Disabilities Monitoring Network, a multiple source surveillance system that incorporates data from educational and health care sources to determine the number of 8-year-old children with ASD among defined populations. For the years 2002 and 2004, there were 3,680 children with ASD among a population of 557 689 8-year-old children. Area-level census SES indicators were used to compute ASD prevalence by SES tertiles of the population.
Results
Prevalence increased with increasing SES in a dose-response manner, with prevalence ratios relative to medium SES of 0.70 (95% confidence interval [CI] 0.64, 0.76) for low SES, and of 1.25 (95% CI 1.16, 1.35) for high SES, (P<0.001). Significant SES gradients were observed for children with and without a pre-existing ASD diagnosis, and in analyses stratified by gender, race/ethnicity, and surveillance data source. The SES gradient was significantly stronger in children with a pre-existing diagnosis than in those meeting criteria for ASD but with no previous record of an ASD diagnosis (p<0.001), and was not present in children with co-occurring ASD and intellectual disability.
Conclusions
The stronger SES gradient in ASD prevalence in children with versus without a pre-existing ASD diagnosis points to potential ascertainment or diagnostic bias and to the possibility of SES disparity in access to services for children with autism. Further research is needed to confirm and understand the sources of this disparity so that policy implications can be drawn. Consideration should also be given to the possibility that there may be causal mechanisms or confounding factors associated with both high SES and vulnerability to ASD.
doi:10.1371/journal.pone.0011551
PMCID: PMC2902521  PMID: 20634960
8.  Parental psychiatric disorders and autism spectrum disorders 
Psychiatry research  2013;207(3):203-211.
The present population-based, case-control study examines associations between specific parental psychiatric disorders and autism spectrum disorders (ASD) including childhood autism, Asperger’s syndrome and pervasive developmental disorder (PDD-NOS). The cohort includes 4713 children born between 1987 and 2005 with diagnoses of childhood autism, Asperger’s syndrome or PDD-NOS. Cases were ascertained from the Finnish Hospital Discharge Register, and each was matched to four controls by gender, date of birth, place of birth, and residence in Finland. Controls were selected from the Finnish Medical Birth Register. Parents were identified through the Finnish Medical Birth Register and Finnish Central Population Register. Parental psychiatric diagnoses from inpatient care were collected from the Finnish Hospital Discharge Register. Conditional logistic regression models were used to assess whether parents’ psychiatric disorders predicted ASD after controlling for parents’ age, smoking during pregnancy and weight for gestational age. In summary, parental schizophrenia spectrum disorders and affective disorders were associated with the risk of ASD regardless of the subgroup. PDD-NOS was associated with all parental psychiatric disorders investigated. Further studies are needed to replicate these findings. These results may facilitate the investigation of shared genetic and familial factors between ASD and other psychiatric disorders.
doi:10.1016/j.psychres.2013.01.005
PMCID: PMC3654001  PMID: 23391634
Schizophrenia; affective; childhood autism; Asperger’s syndrome; pervasive developmental disorders–unspecified; risk factors; epidemiology
9.  Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983–1999: a population-based cohort study 
BMJ Open  2013;3(2):e002356.
Objectives
To describe the hospitalisation patterns in children with intellectual disability (ID) and/or autism spectrum disorder (ASD) after the first year of life and compare with those unaffected.
Design
Prospective cohort study using data linkage between health, ID and hospitalisation population-based datasets.
Setting
Western Australia.
Participants
416 611 individuals born between 1983 and 1999 involving 1 027 962 hospital admission records. Five case categories were defined (mild/moderate ID, severe ID, biomedically caused ID, ASD with ID and ASD without ID) and compared with the remainder of children and young people.
Primary and secondary outcome measures
Time to event analysis was used to compare time hospitalisation and rate of hospitalisation between the different case-groups by estimating HR, accounting for birth year and preterm birth status.
Results
ID and/or ASD were found to be associated with an increased risk of hospitalisation compared with the remainder of the population. The increase in risk was highest in those with severe ID and no ASD (HR=10.33, 95% CI 8.66 to 12.31). For those with ID of known biomedical cause or mild ID of unknown cause, the risk of hospitalisation was lower (HR=7.36, 95% CI 6.73 to 8.07 and HR=3.08, 95% CI 2.78 to 3.40, respectively). Those with ASDs had slightly increased risk (HR=2.82, 95% CI 2.26 to 3.50 for those with ID and HR=2.09, 95% CI 1.85 to 2.36 for those without ID).
Conclusions
Children with an ID or ASD experience an increased risk of hospitalisation after the first year of life which varied from 2 to 10 times that of the rest of the population. Findings can inform service planning or resource allocation for these children with special needs.
doi:10.1136/bmjopen-2012-002356
PMCID: PMC3586131  PMID: 23449747
EPIDEMIOLOGY; PUBLIC HEALTH
10.  Autism Spectrum Disorder Grown Up: A Chart Review of Adult Functioning 
Objective:
To survey the adult functioning of patients with Autism Spectrum Disorder (ASD), and to compare the outcomes for those diagnosed in childhood with those diagnosed as adults.
Methods:
Using a chart review, we evaluated the adult outcomes for 45 individuals diagnosed with ASD prior to age 18, and compared this with the functioning of 35 patients whose ASD was identified after 18 years. Concurrent mental illnesses were noted for both groups.
Results:
Adult outcome was poorest for those with the combination of ASD and Intellectual Disability (ID). The sub- group of individuals with Autism identified in adulthood whose functioning was assessed after 25 years of age had achieved more in the areas of education and independent living. All three groups had a high frequency of psychiatric co-morbidity.
Conclusion:
While co-morbid ID and ASD generally imply a poor outcome, for children and youth with ASD and normal range IQ, adult functioning is more variable and difficult to predict. Because of delays in ongoing social development, some of these individuals may attain educational, independent living and relationship goals, but reach them a decade or more later than typical for the general population.
PMCID: PMC2765385  PMID: 19881941
Autism Spectrum Disorder; adults with Autism; Asperger’s Disorder; Intellectual Disability
11.  Pharmacological treatments prescribed to people with autism spectrum disorder (ASD) in primary health care 
Psychopharmacology  2013;231:1011-1021.
Rationale
Autism spectrum disorders (ASDs) affect 1 % of children, having significant impact on health and social outcomes. Psychotropic medication use by individuals with ASD in the USA increased over time, and polypharmacy occurred in >50 % of those prescribed. In the UK, no psychotropic drugs are approved in ASDs, and little is known about patterns of pharmacological treatment in the ASD population and associated co-morbidities.
Methods
We used The Health Improvement Network, a nationally representative primary care database, to assess the prevalence of ASD diagnoses, psychotropic drug prescribing and neuropsychiatric co-morbidities of 0–24 year olds between 1992 and 2008.
Results
ASD prevalence increased 65-fold from 0.01 % (1992) to 0.50 % (2008). Psychotropic drugs were prescribed to 29 % (1,619/5,651) of the ASD cohort; the most prescribed drugs were sleep medication (9.7 % of prescribed patients), psychostimulants (7.9 %) and antipsychotics (7.3 %). More patients were given psychostimulants and sleep medications over time from 1.5–6.3 % and 2.2–5.9 % respectively. Thirty-seven per cent of the cohort had ≥1 record of a neuropsychiatric co-morbidity, the most common being developmental difficulties and learning disabilities (12.6 %), behavioural, conduct and personality disorders (11.1 %) and attention deficit hyperactivity disorder (7.5 %).
Conclusions
British physicians are more conservative in prescribing practice than American colleagues. However, use of psychostimulants and antipsychotics is much higher in those with ASD than in the general population. Polypharmacy was seen in 34 % of prescribed patients in 2008. Additional studies examining use, efficacy, and long-term safety of antipsychotics and psychostimulants in autistic individuals are warranted.
doi:10.1007/s00213-013-3140-7
PMCID: PMC3932167  PMID: 23681164
Autistic spectrum disorder; Prevalence; Psychotropic drugs; Primary care; Co-morbidity; Children; Adolescents; Young adults
12.  A Multifaceted Intervention to Implement Guidelines and Improve Admission Paediatric Care in Kenyan District Hospitals: A Cluster Randomised Trial 
PLoS Medicine  2011;8(4):e1001018.
Philip Ayieko and colleagues report the outcomes of a cluster-randomized trial carried out in eight Kenyan district hospitals evaluating the effects of a complex intervention involving improved training and supervision for clinicians. They found a higher performance of hospitals assigned to the complex intervention on a variety of process of care measures, as compared to those receiving the control intervention.
Background
In developing countries referral of severely ill children from primary care to district hospitals is common, but hospital care is often of poor quality. However, strategies to change multiple paediatric care practices in rural hospitals have rarely been evaluated.
Methods and Findings
This cluster randomized trial was conducted in eight rural Kenyan district hospitals, four of which were randomly assigned to a full intervention aimed at improving quality of clinical care (evidence-based guidelines, training, job aides, local facilitation, supervision, and face-to-face feedback; n = 4) and the remaining four to control intervention (guidelines, didactic training, job aides, and written feedback; n = 4). Prespecified structure, process, and outcome indicators were measured at baseline and during three and five 6-monthly surveys in control and intervention hospitals, respectively. Primary outcomes were process of care measures, assessed at 18 months postbaseline.
In both groups performance improved from baseline. Completion of admission assessment tasks was higher in intervention sites at 18 months (mean = 0.94 versus 0.65, adjusted difference 0.54 [95% confidence interval 0.05–0.29]). Uptake of guideline recommended therapeutic practices was also higher within intervention hospitals: adoption of once daily gentamicin (89.2% versus 74.4%; 17.1% [8.04%–26.1%]); loading dose quinine (91.9% versus 66.7%, 26.3% [−3.66% to 56.3%]); and adequate prescriptions of intravenous fluids for severe dehydration (67.2% versus 40.6%; 29.9% [10.9%–48.9%]). The proportion of children receiving inappropriate doses of drugs in intervention hospitals was lower (quinine dose >40 mg/kg/day; 1.0% versus 7.5%; −6.5% [−12.9% to 0.20%]), and inadequate gentamicin dose (2.2% versus 9.0%; −6.8% [−11.9% to −1.6%]).
Conclusions
Specific efforts are needed to improve hospital care in developing countries. A full, multifaceted intervention was associated with greater changes in practice spanning multiple, high mortality conditions in rural Kenyan hospitals than a partial intervention, providing one model for bridging the evidence to practice gap and improving admission care in similar settings.
Trial registration
Current Controlled Trials ISRCTN42996612
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In 2008, nearly 10 million children died in early childhood. Nearly all these deaths were in low- and middle-income countries—half were in Africa. In Kenya, for example, 74 out every 1,000 children born died before they reached their fifth birthday. About half of all childhood (pediatric) deaths in developing countries are caused by pneumonia, diarrhea, and malaria. Deaths from these common diseases could be prevented if all sick children had access to quality health care in the community (“primary” health care provided by health centers, pharmacists, family doctors, and traditional healers) and in district hospitals (“secondary” health care). Unfortunately, primary health care facilities in developing countries often lack essential diagnostic capabilities and drugs, and pediatric hospital care is frequently inadequate with many deaths occurring soon after admission. Consequently, in 1996, as part of global efforts to reduce childhood illnesses and deaths, the World Health Organization (WHO) and the United Nations Children's Fund (UNICEF) introduced the Integrated Management of Childhood Illnesses (IMCI) strategy. This approach to child health focuses on the well-being of the whole child and aims to improve the case management skills of health care staff at all levels, health systems, and family and community health practices.
Why Was This Study Done?
The implementation of IMCI has been evaluated at the primary health care level, but its implementation in district hospitals has not been evaluated. So, for example, interventions designed to encourage the routine use of WHO disease-specific guidelines in rural pediatric hospitals have not been tested. In this cluster randomized trial, the researchers develop and test a multifaceted intervention designed to improve the implementation of treatment guidelines and admission pediatric care in district hospitals in Kenya. In a cluster randomized trial, groups of patients rather than individual patients are randomly assigned to receive alternative interventions and the outcomes in different “clusters” of patients are compared. In this trial, each cluster is a district hospital.
What Did the Researchers Do and Find?
The researchers randomly assigned eight Kenyan district hospitals to the “full” or “control” intervention, interventions that differed in intensity but that both included more strategies to promote implementation of best practice than are usually applied in Kenyan rural hospitals. The full intervention included provision of clinical practice guidelines and training in their use, six-monthly survey-based hospital assessments followed by face-to-face feedback of survey findings, 5.5 days training for health care workers, provision of job aids such as structured pediatric admission records, external supervision, and the identification of a local facilitator to promote guideline use and to provide on-site problem solving. The control intervention included the provision of clinical practice guidelines (without training in their use) and job aids, six-monthly surveys with written feedback, and a 1.5-day lecture-based seminar to explain the guidelines. The researchers compared the implementation of various processes of care (activities of patients and doctors undertaken to ensure delivery of care) in the intervention and control hospitals at baseline and 18 months later. The performance of both groups of hospitals improved during the trial but more markedly in the intervention hospitals than in the control hospitals. At 18 months, the completion of admission assessment tasks and the uptake of guideline-recommended clinical practices were both higher in the intervention hospitals than in the control hospitals. Moreover, a lower proportion of children received inappropriate doses of drugs such as quinine for malaria in the intervention hospitals than in the control hospitals.
What Do These Findings Mean?
These findings show that specific efforts are needed to improve pediatric care in rural Kenya and suggest that interventions that include more approaches to changing clinical practice may be more effective than interventions that include fewer approaches. These findings are limited by certain aspects of the trial design, such as the small number of participating hospitals, and may not be generalizable to other hospitals in Kenya or to hospitals in other developing countries. Thus, although these findings seem to suggest that efforts to implement and scale up improved secondary pediatric health care will need to include more than the production and dissemination of printed materials, further research including trials or evaluation of test programs are necessary before widespread adoption of any multifaceted approach (which will need to be tailored to local conditions and available resources) can be contemplated.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001018.
WHO provides information on efforts to reduce global child mortality and on Integrated Management of Childhood Illness (IMCI); the WHO pocket book “Hospital care for children contains guidelines for the management of common illnesses with limited resources (available in several languages)
UNICEF also provides information on efforts to reduce child mortality and detailed statistics on child mortality
The iDOC Africa Web site, which is dedicated to improving the delivery of hospital care for children and newborns in Africa, provides links to the clinical guidelines and other resources used in this study
doi:10.1371/journal.pmed.1001018
PMCID: PMC3071366  PMID: 21483712
13.  Clinical outcomes of an early intervention program for preschool children with Autism Spectrum Disorder in a community group setting 
BMC Pediatrics  2013;13:3.
Background
Available evidence indicates that early intervention programs, such as the Early Start Denver Model (ESDM), can positively affect key outcomes for children with Autism Spectrum Disorder (ASD). However, programs involving resource intensive one-to-one clinical intervention are not readily available or deliverable in the community, resulting in many children with ASD missing out on evidence-based intervention during their early and most critical preschool years. This study evaluated the effectiveness of the ESDM for preschool-aged children with ASD using a predominantly group-based intervention in a community child care setting.
Methods
Participants were 26 children (21 male) with ASD with a mean age of 49.6 months. The ESDM, a comprehensive early intervention program that integrates applied behaviour analysis with developmental and relationship-based approaches, was delivered by trained therapists during the child’s attendance at a child care centre for preschool-aged children with ASD. Children received 15–20 hours of group-based, and one hour of one-to-one, ESDM intervention per week. The average intervention period was ten months. Outcome measures were administered pre- and post-intervention, and comprised a developmental assessment - the Mullen Scales of Early Learning (MSEL); and two parent-report questionnaires - the Social Communication Questionnaire (SCQ) and Vineland Adaptive Behaviours Scales–Second Edition (VABS-II).
Results
Statistically significant post-intervention improvements were found in children’s performance on the visual reception, receptive language and expressive language domains of the MSEL in addition to their overall intellectual functioning, as assessed by standardised developmental quotients. Parents reported significant increases in their child’s receptive communication and motor skills on the VABS-II, and a significant decrease in autism-specific features on the SCQ. These effects were of around medium size, and appeared to be in excess of what may have been expected due to maturation. Nonetheless, these results need to be confirmed in a controlled study.
Conclusions
This study suggests community dissemination of the ESDM using predominantly group-based intervention may be an effective intervention. Making the ESDM accessible to the wider ASD community in child care settings has the potential for significant clinical and economic benefits. Further studies are indicated in this area, including those with younger children, and which incorporate a control group and standardised ASD assessments.
Trial registration
This trial is registered with the Australian New Zealand Clinical Trials Registry: Registry number ACTRN12612000461897.
doi:10.1186/1471-2431-13-3
PMCID: PMC3631131  PMID: 23294523
Autism; Behavioral intervention; Early intervention; Cognitive function; Developmental outcomes
14.  RAADS-14 Screen: validity of a screening tool for autism spectrum disorder in an adult psychiatric population 
Molecular Autism  2013;4:49.
Background
Autism spectrum disorder (ASD) can be difficult to distinguish from other psychiatric disorders. The clinical assessment of ASD is lengthy, and has to be performed by a specialized clinician. Therefore, a screening instrument to aid in the identification of patients who may have undiagnosed ASD should be useful. The purpose of this study was to develop such a screening instrument.
Methods
Based on the 80 item Ritvo Autism and Asperger Diagnostic Scale-Revised (RAADS-R), we developed a 14 item self-evaluation questionnaire, the RAADS-14 Screen. In total, 135 adults with ASD and 508 psychiatric controls completed the abridged version of the RAADS-R.
Results
The RAADS-14 Screen score was significantly higher in the ASD group than in the control samples, with a median score of 32 for ASD, 15 for attention deficit hyperactivity disorder, and 11 for other psychiatric disorders (P < 0.001). A cut-off score of 14 or above reached a sensitivity of 97% and a specificity of 46 to 64%. A factor analysis identified three factors consistent with mentalizing deficits, social anxiety, and sensory reactivity relevant for the diagnosis of ASD. The psychometric properties of RAADS-14 Screen were shown to be satisfactory.
Conclusions
The results of this study indicate that RAADS-14 Screen is a promising measure in screening for ASD in adult psychiatric outpatients.
doi:10.1186/2040-2392-4-49
PMCID: PMC3907126  PMID: 24321513
Autistic disorder; Asperger syndrome; Adult; Screening; Self-assessment; Rating scale
15.  The importance of physician knowledge of autism spectrum disorder: results of a parent survey 
BMC Pediatrics  2007;7:37.
Background
Early diagnosis and referral to treatment prior to age 3–5 years improves the prognosis of children with Autism Spectrum Disorder (ASD). However, ASD is often not diagnosed until age 3–4 years, and medical providers may lack training to offer caregivers evidence-based treatment recommendations. This study tested hypotheses that 1) children with ASD would be diagnosed between ages 3–4 years (replicating prior work), 2) caregivers would receive little information beyond the diagnosis from their medical providers, and 3) caregivers would turn to other sources, outside of their local health care professionals, to learn more about ASD.
Methods
146 ASD caregivers responded to an online survey that consisted of questions about demographics, the diagnostic process, sources of information/support, and the need and availability of local services for ASDs. Hypotheses were tested using descriptives, regression analyses, analyses of variance, and chi-squared.
Results
The average age of diagnosis was 4 years, 10 months and the mode was 3 years. While approximately 40% of professionals gave additional information about ASD after diagnosis and 15–34% gave advice on medical/educational programs, only 6% referred to an autism specialist and 18% gave no further information. The diagnosis of Autism was made at earlier ages than Asperger's Disorder or PDD-NOS. Developmental pediatricians (relative to psychiatrists/primary care physicians, neurologists, and psychologists) were associated with the lowest age of diagnosis and were most likely to distribute additional information. Caregivers most often reported turning to the media (i.e., internet, books, videos), conferences, and other parents to learn more about ASD.
Conclusion
The average age of ASD diagnosis (4 years, 10 months) was later than optimal if children are to receive the most benefit from early intervention. Most professionals gave caregivers further information about ASDs, especially developmental pediatricians, but a sizeable minority did not. This may reflect a lack of training in the wide range of behaviors that occur across the autism spectrum. Parents turned to outside sources to learn more about ASD. We recommend that all physicians receive specialized training about ASDs to improve upon early screening and diagnosis, and then advise caregivers about empirically-supported services.
doi:10.1186/1471-2431-7-37
PMCID: PMC2235850  PMID: 18021459
16.  The Michigan Autism Spectrum Questionnaire: A Rating Scale for High-Functioning Autism Spectrum Disorders 
Autism Research and Treatment  2013;2013:708273.
Although the DSM-5 has recently created a single category of autism spectrum disorder (ASD), delineation of its putative subtypes remains clinically useful. For this process, screening instruments should ideally be brief, simple, and easily available. The aim of this study is to describe the validity of one such instrument. We administered the Michigan Autism Spectrum Questionnaire (MASQ), a 10-item questionnaire, to 42 patients with ASD (age range 6–13 years, mean 9.7 years, SD 2.5, one female) and 18 patients with other psychiatric disorders (age range 6–17 years, mean 11.7 years, SD 3.8, 6 females). Responses to each item were scored from 0 to 4 yielding a total score of 30. Patients with intellectual disability were excluded. As a group, patients with ASD scored higher than those with other psychiatric disorders (Chi-square test with 1 df = 16.019, P < 0.0001). Within the ASD group, a linear discriminant analysis found that the best cut-off points were 22 or above for Asperger syndrome, 14 to 21 for autism/PDDNOS, and less than 14 for those with other psychiatric disorders. We propose that the MASQ can be used as a brief measure to screen high-functioning ASD from other psychiatric disorders and to identify its possible subtypes.
doi:10.1155/2013/708273
PMCID: PMC3870086  PMID: 24381759
17.  Autism Spectrum Disorder Scale Scores in Pediatric Mood and Anxiety Disorders 
Objective
To compare scores on autism spectrum disorder (ASD) symptom scales in healthy youths and youths with mood or anxiety disorders.
Method
A total of 352 youths were recruited (107 healthy participants, 88 with an anxiety disorder, 32 with major depressive disorder, 62 with bipolar disorder, and 63 with a mood disorder characterized by severe nonepisodic irritability). Participants received structured psychiatric interviews and parent ratings on at least one of three ASD symptom scales: Children’s Communication Checklist, Social Communication Questionnaire, and Social Responsiveness Scale.
Results
Relative to healthy youths, youths with mood or anxiety disorders exhibited higher scores on each ASD symptom scale. ASD symptom scale scores also showed an association with impairment severity and attention-deficit/hyperactivity disorder. Among patients with mood disorders but not those with anxiety disorders, consistent, statistically significant associations between diagnosis and ASD symptom scale scores remained even after controlling for potential confounders.
Conclusions
Patients with mood disorders exhibit higher scores on ASD symptom scales than healthy youths or youths with anxiety disorders. These data should alert clinicians to the importance of assessing ASD symptoms to identify social reciprocity and communication deficits as possible treatment targets in pediatric mood and anxiety disorders.
doi:10.1097/CHI.0b013e31816bffa5
PMCID: PMC2735817  PMID: 18434923
mood disorder; anxiety disorder; autism spectrum; impairment
18.  Trends in Resource Utilization by Children with Neurological Impairment in the United States Inpatient Health Care System: A Repeat Cross-Sectional Study 
PLoS Medicine  2012;9(1):e1001158.
Jay Berry and colleagues report findings from an analysis of hospitalization data in the US, examining the proportion of inpatient resources attributable to care for children with neurological impairment.
Background
Care advances in the United States (US) have led to improved survival of children with neurological impairment (NI). Children with NI may account for an increasing proportion of hospital resources. However, this assumption has not been tested at a national level.
Methods and Findings
We conducted a study of 25,747,016 US hospitalizations of children recorded in the Kids' Inpatient Database (years 1997, 2000, 2003, and 2006). Children with NI were identified with International Classification of Diseases, 9th Revision, Clinical Modification diagnoses resulting in functional and/or intellectual impairment. We assessed trends in inpatient resource utilization for children with NI with a Mantel-Haenszel chi-square test using all 4 y of data combined. Across the 4 y combined, children with NI accounted for 5.2% (1,338,590) of all hospitalizations. Epilepsy (52.2% [n = 538,978]) and cerebral palsy (15.9% [n = 164,665]) were the most prevalent NI diagnoses. The proportion of hospitalizations attributable to children with NI did not change significantly (p = 0.32) over time. In 2006, children with NI accounted for 5.3% (n = 345,621) of all hospitalizations, 13.9% (n = 3.4 million) of bed days, and 21.6% (US$17.7 billion) of all hospital charges within all hospitals. Over time, the proportion of hospitalizations attributable to children with NI decreased within non-children's hospitals (3.0% [n = 146,324] in 1997 to 2.5% [n = 113,097] in 2006, p<.001) and increased within children's hospitals (11.7% [n = 179,324] in 1997 to 13.5% [n = 209,708] in 2006, p<0.001). In 2006, children with NI accounted for 24.7% (2.1 million) of bed days and 29.0% (US$12.0 billion) of hospital charges within children's hospitals.
Conclusions
Children with NI account for a substantial proportion of inpatient resources utilized in the US. Their impact is growing within children's hospitals. We must ensure that the current health care system is staffed, educated, and equipped to serve this growing segment of vulnerable children.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Disorders of the central and peripheral nervous system, often referred to as neurological impairments, are common in infants and children and can cause functional or intellectual disability. There are many causes of neurological impairments, including birth trauma, congenital abnormalities, structural defects, infections, tumors, blood flow disruption, genetic and metabolic conditions, and toxins. Symptoms can be progressive or static and vary widely depending on the condition. For example, developmental delay, changes in activity—often due to muscle wasting—and seizures may be common symptoms of neurological conditions in children. In many countries, extremely premature babies, and children with conditions such as spina bifida and muscular dystrophy, now receive better care than they used to, and may survive longer. However, although such children may have long-term care needs, they may receive crisis-driven, uncoordinated care, even in high-income countries.
Why Was This Study Done?
It is not well understood what proportion of hospital resource use is attributable to care for children with neurological impairments, although it's thought that this group may account for an increasing proportion of hospital resources. In this study, the researchers attempted to answer this question, specifically for the US, by evaluating national trends in hospital admissions for children with neurological impairments.
What Did the Researchers Do and Find?
The researchers used a multi-state database of US hospital admissions for children aged 0–18 years, known as the KID—the Healthcare Cost and Utilization Project's Kids' Inpatient Database—to identify the number of hospital admissions, total number of days spent in the hospital, and total health care costs for children with neurological impairments from 1997 to 2006. The researchers identified appropriate admissions by using diagnostic codes from the International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM), which were reviewed and approved by two pediatric neurologists.
The researchers found that from 1997 to 2006, there were 25,747,016 hospital admissions for children aged 0–18 years, and of these, 1,338,590 (5.2%) were associated with children who had a definite diagnosis of neurological impairment. The most prevalent diagnoses among all hospitalized children with neurological impairments were epilepsy (52.2%) and cerebral palsy (15.9%). Furthermore, across the study period, the proportion of children aged 13–18 years admitted to hospitals with neurological impairments increased from 7.3% to 9.9%. The researchers also found that children with neurological impairments accounted for an increasing proportion of days spent in a hospital (12.9% in 1997 to 13.9% in 2006). In addition, there was a substantial increase in admissions for infants with neurological impairments compared to infants without neurological impairments. The researchers also found that throughout the study period, there was a general pattern for children with neurological impairments to be admitted to pediatric hospitals, rather than general hospitals. Within children's hospitals, children with neurological impairments accounted for a substantial proportion of resources over the study period, including nearly one-third of all hospital charges.
What Do These Findings Mean?
These findings show that in the US, children with neurological impairments account for a substantial proportion of inpatient resources utilized, particularly within children's hospitals, necessitating the need for adequate clinical care and a coordination of efforts to ensure that the needs of children with neurological impairments are met. System-based efforts such as partnerships between hospitals and families of children with neurological impairments and the rigorous evaluation of care treatment strategies have the potential to promote quality care for children with neurological impairments. However, such efforts will work only if the current health care system is adequately staffed with appropriately educated professionals.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/pmed.1001158.
More information is available about the KID database used in this study
NHS Choices has further information about epilepsy, one of the most common types of neurological impairment examined in this study
Further information is available from PubMed Health about cerebral palsy, another neurological condition acquired during development that was studied in this dataset
doi:10.1371/journal.pmed.1001158
PMCID: PMC3260313  PMID: 22272190
19.  Mood and Anxiety Symptoms in Psychiatric Inpatients with Autism Spectrum Disorder and Depression 
Recent reports suggest that individuals with autism spectrum disorders (ASD) may experience depression at a high frequency, yet few published studies address this issue, especially among adults. In the current investigation, we reviewed features of depression and comorbid traits among depressed inpatients with intellectual disabilities (ID) as a function of ASD. A retrospective chart review was performed for 53 inpatients meeting criteria for depression (13 individuals with ASD and ID and 40 matched individuals with ID but without ASD), all of whom had received a diagnosis of depression at the time of discharge from a specialty psychiatric unit for adults with ID. The depression diagnoses were based on a comprehensive clinical assessment; specific mood and anxiety symptoms were reported by informants at the time of intake using the Mood and Anxiety Semi-Structured (MASS) Interview for Patients with Intellectual Disabilities (Charlot, Deutsch, Hunt, Fletcher, & McIlvane, 2007). Overall, few qualitative differences were detected between the 2 groups. Both depressed inpatient groups had high rates of comorbid anxiety disorders as well as externalizing behaviors. Inpatients with ASD had a total of 2 more symptoms (out of 29 possible symptom items) than their depressed peers without an ASD diagnosis (mean scores of 12.23 and 9.85, respectively). Anxiety disorders were reported in 62% of individuals with ASD and 38% of those without ASD. Antipsychotic medication was prevalent among the patients with ASD and depression. Over 80% of the inpatients with ASD and depression, compared with 49% of the non-ASD group, were treated with these medications.
doi:10.1080/19315860802313947
PMCID: PMC3760522  PMID: 24009649
autism; autism spectrum disorders; depression; anxiety; antipsychotic medications; mood disorders
20.  Environmental and State-Level Regulatory Factors Affect the Incidence of Autism and Intellectual Disability 
PLoS Computational Biology  2014;10(3):e1003518.
Many factors affect the risks for neurodevelopmental maladies such as autism spectrum disorders (ASD) and intellectual disability (ID). To compare environmental, phenotypic, socioeconomic and state-policy factors in a unified geospatial framework, we analyzed the spatial incidence patterns of ASD and ID using an insurance claims dataset covering nearly one third of the US population. Following epidemiologic evidence, we used the rate of congenital malformations of the reproductive system as a surrogate for environmental exposure of parents to unmeasured developmental risk factors, including toxins. Adjusted for gender, ethnic, socioeconomic, and geopolitical factors, the ASD incidence rates were strongly linked to population-normalized rates of congenital malformations of the reproductive system in males (an increase in ASD incidence by 283% for every percent increase in incidence of malformations, 95% CI: [91%, 576%], p<6×10−5). Such congenital malformations were barely significant for ID (94% increase, 95% CI: [1%, 250%], p = 0.0384). Other congenital malformations in males (excluding those affecting the reproductive system) appeared to significantly affect both phenotypes: 31.8% ASD rate increase (CI: [12%, 52%], p<6×10−5), and 43% ID rate increase (CI: [23%, 67%], p<6×10−5). Furthermore, the state-mandated rigor of diagnosis of ASD by a pediatrician or clinician for consideration in the special education system was predictive of a considerable decrease in ASD and ID incidence rates (98.6%, CI: [28%, 99.99%], p = 0.02475 and 99% CI: [68%, 99.99%], p = 0.00637 respectively). Thus, the observed spatial variability of both ID and ASD rates is associated with environmental and state-level regulatory factors; the magnitude of influence of compound environmental predictors was approximately three times greater than that of state-level incentives. The estimated county-level random effects exhibited marked spatial clustering, strongly indicating existence of as yet unidentified localized factors driving apparent disease incidence. Finally, we found that the rates of ASD and ID at the county level were weakly but significantly correlated (Pearson product-moment correlation 0.0589, p = 0.00101), while for females the correlation was much stronger (0.197, p<2.26×10−16).
Author Summary
Disease clusters are defined as geographically compact areas where a particular disease, such as a cancer, shows a significantly increased rate. It is presently unclear how common such clusters are for neurodevelopmental maladies, such as autism spectrum disorders (ASD) and intellectual disability (ID). In this study, examining data for one third of the whole US population, the authors show that (1) ASD and ID display strong clustering across US counties; (2) counties with high ASD rates also appear to have high ID rates, and (3) the spatial variation of both phenotypes appears to be driven by environmental, and, to a lesser extent, economic incentives at the state level.
doi:10.1371/journal.pcbi.1003518
PMCID: PMC3952819  PMID: 24625521
21.  Prevalence of selected clinical problems in older adults with autism and intellectual disability 
Background
Originally described as a disorder of childhood, evidence now demonstrates the lifelong nature of autism spectrum disorder (ASD). Despite the increase of the population over age 65, older adults with ASD remain a scarcely explored subpopulation. This study set out to investigate the prevalence of clinically relevant behaviors and medical problems in a sample of US adults aged 30 to 59 with ASD and intellectual disability (ID), in comparison to those with ID only.
Methods
A cross-sectional study, with both an exploratory and replication analysis, was conducted using National Core Indicators (NCI) multi-state surveys from 2009 to 2010 and 2010 to 2011. There were 4,989 and 4,261 adults aged 30–59 with ID examined from the 2009 to 2010 and 2010 to 2011 samples, respectively. The two consecutive annual samples consisted of 438 (9%) and 298 (7%) individuals with ASD and ID. Variables were chosen from the NCI data as outcomes, including medication use for behavior problems, severe or aggressive behavior problems and selected medical conditions.
Results
No age-associated disparities were observed between adults with ASD and ID versus adults with ID only in either sample. For the 2009 to 2010 sample, the prevalence of support needed to manage self-injurious, disruptive and destructive behavior in subjects with ASD and ID ranged from 40 to 60%. Similarly, the prevalence estimates of self-injurious, disruptive and destructive behavior were each almost double in adults with ASD and ID relative to those with ID only. These results were replicated in the 2010 to 2011 sample.
Conclusions
The findings of this study highlight the urgent need for research on the nature and treatment of severe behavior problems in the rapidly increasing population of older adults with ASD. They also suggest the importance of developing policies that expand our capacity to care for these individuals.
doi:10.1186/1866-1955-5-27
PMCID: PMC3848965  PMID: 24066979
Autism; ASD; Older adults; Clinical problems; Behavior problems; Intellectual disabilities
22.  Effects of a Dedicated Regional Psychiatric Emergency Service on Boarding of Psychiatric Patients in Area Emergency Departments 
Introduction
Mental health patients boarding for long hours, even days, in United States emergency departments (EDs) awaiting transfer for psychiatric services has become a considerable and widespread problem. Past studies have shown average boarding times ranging from 6.8 hours to 34 hours. Most proposed solutions to this issue have focused solely on increasing available inpatient psychiatric hospital beds, rather than considering alternative emergency care designs that could provide prompt access to treatment and might reduce the need for many hospitalizations. One suggested option has been the “regional dedicated emergency psychiatric facility,” which serves to evaluate and treat all mental health patients for a given area, and can accept direct transfers from other EDs. This study sought to assess the effects of a regional dedicated emergency psychiatric facility design known at the “Alameda Model” on boarding times and hospitalization rates for psychiatric patients in area EDs.
Methods
Over a 30-day period beginning in January 2013, 5 community hospitals in Alameda County, California, tracked all ED patients on involuntary mental health holds to determine boarding time, defined as the difference between when they were deemed stable for psychiatric disposition and the time they were discharged from the ED for transfer to the regional psychiatric emergency service. Patients were also followed to determine the percentage admitted to inpatient psychiatric units after evaluation and treatment in the psychiatric emergency service.
Results
In a total sample of 144 patients, the average boarding time was approximately 1 hour and 48 minutes. Only 24.8% were admitted for inpatient psychiatric hospitalization from the psychiatric emergency service.
Conclusion
The results of this study indicate that the Alameda Model of transferring patients from general hospital EDs to a regional psychiatric emergency service reduced the length of boarding times for patients awaiting psychiatric care by over 80% versus comparable state ED averages. Additionally, the psychiatric emergency service can provide assessment and treatment that may stabilize over 75% of the crisis mental health population at this level of care, thus dramatically alleviating the demand for inpatient psychiatric beds. The improved, timely access to care, along with the savings from reduced boarding times and hospitalization costs, may well justify the costs of a regional psychiatric emergency service in appropriate systems.
doi:10.5811/westjem.2013.6.17848
PMCID: PMC3935777  PMID: 24578760
23.  PREFERENCE-BASED HEALTH-RELATED QUALITY OF LIFE OUTCOMES IN CHILDREN WITH AUTISM SPECTRUM DISORDERS: A COMPARISON OF GENERIC INSTRUMENTS 
PharmacoEconomics  2012;30(8):661-679.
Background
Cost-effectiveness analysis of pharmaceutical and other treatments for children with autism spectrum disorders (ASDs) has the potential to improve access to services by demonstrating the value of treatment to public and private payers, but methods for measuring quality adjusted life years (QALYs) in children are understudied. No cost-effectiveness analyses have been undertaken in this population using the cost per QALY metric.
Objective
This study describes health-related quality of life (HRQoL) outcomes in children with ASDs and compares the sensitivity of two generic preference-based instruments relative to ASD-related conditions and symptoms.
Methods
The study design was cross-sectional with prospectively collected outcome data that was correlated with retrospectively assessed clinical information. Subjects were recruited from two sites of the Autism Treatment Network (ATN): a developmental center in Little Rock, Arkansas, and an outpatient psychiatric clinic at Columbia University Medical Center in New York, NY. Children that met DSM-IV criteria for an ASD by a multi-disciplinary team evaluation were asked to participate in a clinical registry. Families of children with an ASD that agreed to be contacted about participation in future research studies as part of the ATN formed the sampling frame for the study. Families were included if the child with the ASD was between 4 and 17 years of age and the family caregiver spoke English. Eligible families were contacted by mail to see if they would be interested in participating in the study with N=150 completing surveys. HRQoL outcomes were described using the Health Utilities Index Mark III (HUI-3) and the self-administered Quality of Well-Being scale (QWB-SA) obtained by proxy via the family caregiver.
Results
Children were diagnosed as having autistic disorder (76%), pervasive developmental disorder (PDD-NOS) (15%), and Asperger's disorder (9%). Average HUI-3 and QWB-SA scores were 0.68 (SD=0.21, range of 0.07 to 1) and 0.59 (SD=0.16, range of 0.18 to 1) respectively. The HUI-3 score was significantly correlated with clinical variables including adaptive behavior (ρ=0.52; p<0.001) and cognitive functioning (ρ=0.36; p<0.001). The QWB-SA score had weak correlation with adaptive behavior (ρ=0.25; p<0.001) and cognitive functioning (ρ=0.17; p<0.005). Change scores for the HUI3 were larger than the QWB-SA for all clinical measures. Scores for the HUI3 increased 0.21 (95% CI: 0.14–0.29) points across the first to third quartile of the cognitive functioning measure compared to 0.05 (95% CI: −0.01–0.11) for the QWB-SA. Adjusted R2's also were higher for the HUI3 compared to the QWB-SA across all clinical measures.
Conclusions
The HUI-3 was more sensitive to clinical measures used to characterize children with autism compared to the QWB-SA score. The findings provide a benchmark to compare scores obtained by alternative methods and instruments. Researchers should consider incorporating the HUI-3 in clinical trials and other longitudinal research studies to build the evidence base for describing the cost-effectiveness of services provided to this important population.
doi:10.2165/11597200-000000000-00000
PMCID: PMC3423960  PMID: 22788258
24.  Autism Spectrum Disorders in the Stockholm Youth Cohort: Design, Prevalence and Validity 
PLoS ONE  2012;7(7):e41280.
Objective
Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity.
Method
The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0–17 years, ever resident in Stockholm County in 2001–2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid intellectual disability. Prospectively recorded information on potential determinants and consequences of ASD were retrieved from national and regional health and administrative registers. Case ascertainment was validated through case-note review, and cross validation with co-existing cases in a national twin study.
Results
The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2–11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0–44.2) of cases. We found 96.0% (92.0–98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2–95.8) of affected twins.
Conclusions
Findings from this contemporary study accords with recently reported prevalence estimates from Western countries at around 1%, based on valid case ascertainment. The Stockholm Youth Cohort, in light of the availability of extensive information from Sweden's registers, constitutes an important resource for ASD research. On-going work, including collection of biological samples, will enrich the study further.
doi:10.1371/journal.pone.0041280
PMCID: PMC3401114  PMID: 22911770
25.  Coexisting Disorders and Problems in Preschool Children with Autism Spectrum Disorders 
The Scientific World Journal  2013;2013:213979.
Objectives. To analyze cooccurring disorders and problems in a representative group of 198 preschool children with autism spectrum disorders (ASD) who had had interventions at a specialized habilitation center. Methods. Parents and children were seen by a research team. Data were based on parental interviews, pediatric assessments, and tests of the child. Information on autistic symptoms, general cognitive function, speech and language, motor function, epilepsy, vision, hearing, activity level, behavior, and sleep was collected. Results. Three ASD categories were used: (1) autistic disorder (AD), (2) autistic-like condition (ALC) or Asperger syndrome, and (3) one group with autistic symptoms/traits but not entirely all its criteria met for ASD. Children with autism had a mean of 3.2 coexisting disorders or problems, the ALC/Asperger group had a mean of 1.6, and children with autistic traits had a mean of 1.6. The most common disorder/problems in the total group pertained to language problems (78%), intellectual disability (ID) (49%), below average motor function (37%), and severe hyperactivity/ADHD (33%). Conclusions. The results accord with the concept of early symptomatic syndromes eliciting neurodevelopmental clinical examination (ESSENCE), and highlight the need of considering ASD in a broad perspective taking also other cooccurring developmental disorders into account.
doi:10.1155/2013/213979
PMCID: PMC3655672  PMID: 23737708

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