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We examine the cost-effectiveness of treating epilepsy with anti-epileptic medicines in autistic children, looking at impacts on healthcare providers (in England, Ireland, Italy and Spain) and children's families (in Ireland). We find carbamazepine to be the most cost-effective drug to try first in children with newly diagnosed focal seizures. For England and Spain, oxcarbazepine is the most cost-effective treatment when taken as additional treatment for those children whose response to monotherapy is suboptimal. In Ireland and Italy, gabapentin is the most cost-effective option. Our additional scenario analysis presents the aggregate cost to families with autistic children who are being treated for epilepsy: this cost is considerably higher than healthcare provider expenditure., (© 2023. The Author(s).)

Microtransactions provide optional, virtual, video game goods that, for an additional cost to the player, provide additional game content and alter the gameplay experience. Loot boxes-a specific form of microtransaction-offer randomised rewards in exchange for payment, and are argued to be structurally and psychologically similar to gambling. Nascent research suggests that a link exists between autism and both problematic gaming and problematic gambling. Here, we investigated the relationships between autistic characteristics and experiences, and excessive video gaming and microtransaction expenditure. A sample of 1178 adults from Australia, Aotearoa, and The United States were recruited from Prolific Academic, and completed a survey measuring in-game expenditure, autistic characteristics and experiences, problematic gaming, problematic gambling, and risky loot box use. Analyses showed positive associations between autistic characteristics and experiences with problematic gaming and problem gambling symptomatology. However, results also showed a small, negative association between autistic characteristics and experiences and spending on loot boxes when problem gambling symptoms, problematic gaming, and risky loot box use were statistically controlled for. These results suggest that autistic gamers may be vulnerable to problematic gaming and gambling, but that this effect does not extend to the purchasing of microtransactions., (© 2024. The Author(s).)

Many autistic children access some form of early intervention, but little is known about the value for money of different programs. We completed a scoping review of full economic evaluations of early interventions for autistic children and/or their families. We identified nine studies and reviewed their methods and quality. Most studies involved behavioral interventions. Two were trial-based, and the others used various modelling methods. Clinical measures were often used to infer dependency levels and quality-adjusted life-years. No family-based or negative outcomes were included. Authors acknowledged uncertain treatment effects. We conclude that economic evaluations in this field are sparse, methods vary, and quality is sometimes poor. Economic research is needed alongside longer-term clinical trials, and outcome measurement in this population requires further exploration., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Research on children and youth on the autism spectrum reveal racial and ethnic disparities in access to healthcare and utilization, but there is less research to understand how disparities persist as autistic adults age. We need to understand racial-ethnic inequities in obtaining eligibility for Medicare and/or Medicaid coverage, as well as inequities in spending for autistic enrollees under these public programs., Methods: We conducted a cross-sectional cohort study of U.S. publicly-insured adults on the autism spectrum using 2012 Medicare-Medicaid Linked Enrollee Analytic Data Source (n = 172,071). We evaluated differences in race-ethnicity by eligibility (Medicare-only, Medicaid-only, Dual-Eligible) and spending., Findings: The majority of white adults (49.87%) were full-dual eligible for both Medicare and Medicaid. In contrast, only 37.53% of Black, 34.65% Asian/Pacific Islander, and 35.94% of Hispanic beneficiaries were full-dual eligible for Medicare and Medicare, with most only eligible for state-funded Medicaid. Adjusted logistic models controlling for gender, intellectual disability status, costly chronic condition, rural status, county median income, and geographic region of residence revealed that Black beneficiaries were significantly less likely than white beneficiaries to be dual-eligible across all ages. Across these three beneficiary types, total spending exceeded $10 billion. Annual total expenditures median expenditures for full-dual and Medicaid-only eligible beneficiaries were higher among white beneficiaries as compared with Black beneficiaries., Conclusions: Public health insurance in the U.S. including Medicare and Medicaid aim to reduce inequities in access to healthcare that might exist due to disability, income, or old age. In contrast to these ideals, our study reveals that racial-ethnic minority autistic adults who were eligible for public insurance across all U.S. states in 2012 experience disparities in eligibility for specific programs and spending. We call for further evaluation of system supports that promote clear pathways to disability and public health insurance among those with lifelong developmental disabilities., Competing Interests: The authors have declared that no competing interests exist.

County-level ASD prevalence was estimated using an age-resolved snapshot from the California Department of Developmental Services (DDS) for birth years 1993-2013. ASD prevalence increased among all children across birth years 1993-2000 but plateaued or declined thereafter among whites from wealthy counties. In contrast, ASD rates increased continuously across 1993-2013 among whites from lower income counties and Hispanics from all counties. Both white ASD prevalence and rate of change in prevalence were inversely correlated to county income from birth year 2000-2013 but not 1993-2000. These disparate trends within the dataset suggest that wealthy white parents, starting around 2000, may have begun opting out of DDS in favor of private care and/or making changes that effectively lowered their children's risk of ASD.

This review aims to summarize evidence from published articles regarding the economic burdens on parents of children diagnosed with autism to elaborate on current research status, discern key findings and provide suggestions for future studies. A total of 1024 records were identified through our systematic literature research, and 33 studies were included in the review. The 33 included studies reported findings from 10 different countries around the world. These articles (published from 2003 to 2017) used a variety of research methods, including quantitative (n = 26), qualitative (n = 4), and mixed (n = 3) study designs. In summary, parents of autistic children were susceptible to adverse employment impacts and increased financial burdens, especially mothers. More attention should be given to the development of appropriate medical resource allocation and the alleviation of economic burdens on parents of children with autism.

Objectives: Hospitals have begun designing programs tailored to patients with intellectual disabilities to address their specific healthcare needs and social determinants of health. This study aimed to determine whether these programs improve hospital outcomes for patients with intellectual disabilities., Study Design: This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism who were discharged from 5 hospitals participating in Vizient's Clinical Data Base/Resource Manager between January 2010 and September 2018., Methods: Generalized linear regression models were constructed to test the association between tailored program status and length of stay, cost, and cost per day, and a binary logistic regression model was constructed to test the association between tailored program status and 30-day readmission. A secondary analysis stratified patients by 3M All Patient Refined Diagnosis Related Groups grouper (the standard for inpatient classification) admission severity of illness (ASOI) score., Results: Of the 6618 patients included in the study, 29% were treated at hospitals with tailored programs. After controlling for patient demographic characteristics and clinical factors, patients treated at hospitals without programs had higher total costs (relative risk [RR], 1.06; P = .038) and cost per day (RR, 1.11; P <.001). Patients with an extreme ASOI score who were treated at hospitals without programs had significantly longer stays (RR, 1.38; P = .001), higher total cost (RR, 1.42; P <.001), and higher cost per day (RR, 1.10; P = .025) than patients treated at hospitals with programs., Conclusions: Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving inpatient care for this population.

Background and Objectives: Many adults with autism spectrum disorders require lifelong reliance on caregiver support. As these caregivers age and experience health challenges, social support can be critical. This study seeks to understand if caregiver health moderates the relationship between informal social support and caregiver burden., Research Design and Methods: A total of 320 parents (age 50+ years) of adult children diagnosed with ASD were recruited from autism organizations and support groups and completed a web-based survey. Separate moderation analyses were used to determine if caregiver health was moderating the relationship between informal social support and composite caregiver burden, as well as the separate domains of developmental, time dependence, emotional burden, and impact of caregiving on finances. For each analysis, perceptions of available informal social support were the independent variable, composite and domains of caregiver burden were dependent variables, and parents' self-reported general health was the moderating variable., Results: Caregiver health had a statistically significant moderating effect when predicting the relationships between informal social support and composite caregiver burden, as well as time dependence burden and impact of caregiving on finances., Discussion and Implications: Increased attention should be focused on supporting the current and future needs of both aging caregivers and their adult children with ASD. Future research on the dynamics of social support, health, and burden is also urgently needed to address the growing number of aging caregivers of adults diagnosed with ASD., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

As the number of individuals diagnosed with autism increases, there is an increase in demand to provide support throughout their lifespan. This study aimed to: (1) estimate trends in the prevalence of autism diagnoses and medical services use in adults with autism diagnoses; (2) assess predictors of healthcare utilization and costs among adults with autism diagnoses enrolled in Medicaid. A retrospective analysis of 2006-2008 Medicaid claims for 39 states was conducted. There was a 38% increase in the prevalence of autism diagnoses from 2006 to 2008. Total expenditures and outpatient and ER visits varied significantly by demographic variables.

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

Background: We examined the utilization of rehabilitation resources among children with autism spectrum condition (ASC), a neurodevelopmental condition, in Taiwan., Methods: We derived from the National Health Insurance Research Database of Taiwan data pertaining to 3- to 12-year-old children for the period 2008-2010. Based on diagnoses executed in accordance with the International Classification of Diseases, Ninth Revision, Clinical Modification, we classified these data into the ASC and non-ASC groups and analyzed them through multiple linear regression model, negative binomial model, independent sample t testing, and χ 2 testing., Results: Compared with the non-ASC group, the ASC group exhibited higher utilization of rehabilitation resources. Because hospitals are constrained by overall expenditure limits, expenditure on rehabilitation resources has plateaued, preventing any increase in the utilization of rehabilitation resources. In our ASC group, preschool-aged children significantly outnumbered (p < 0.001) school-aged children. When stratified by the hospital level, district hospitals reported the highest utilization (p < 0.001). When stratified by region, the highest utilization was in Taipei, whereas the lowest was in the East region (p < 0.001). The total annual cost, average frequency of visits, utilization of rehabilitation resources, and average cost were all affected by such elements as patient demographics, hospital type and location (p < 0.001)., Conclusions: For improving treatment outcomes among children with ASC and decreasing treatment expenditure, policies that promote the timely ASC detection and treatment should be implemented.

There has been recent interest in the relationship between socioeconomic status and the diagnosis of autism in children. Studies in the United States have found lower rates of autism diagnosis associated with lower socioeconomic status, while studies in other countries report no association, or the opposite. This article aims to contribute to the understanding of this relationship in the United Kingdom. Using data from the Born in Bradford cohort, comprising 13,857 children born between 2007 and 2011, it was found that children of mothers educated to A-level or above had twice the rate of autism diagnosis, 1.5% of children (95% confidence interval: 1.1%, 1.9%) compared to children of mothers with lower levels of education status 0.7% (95% confidence interval: 0.5%, 0.9%). No statistically significant relationship between income status or neighbourhood material deprivation was found after controlling for mothers education status. The results suggest a substantial level of underdiagnosis for children of lower education status mothers, though further research is required to determine the extent to which this is replicated across the United Kingdom. Tackling inequalities in autism diagnosis will require action, which could include increased education, awareness, further exploration of the usefulness of screening programmes and the provision of more accessible support services.

Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0-18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331-US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53-US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4-21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder-diagnosed children.

Adolescents and young adults with special care and health needs in the United States-many of whom have Medicaid coverage-at the transition phase between pediatric and adult care often experience critical care gaps. To address this challenge, a new model-referred to as Comprehensive Care Clinic (CCC)-has been developed and implemented by Geisinger Health System since 2012. CCC comprises a care team, consisting of a generalist physician, advanced practitioner, pharmacist, and a nurse case manager, that develops and closely follows a coordinated care plan. This study examines the CCC impact on total cost of care and utilization by analyzing Geisinger Health Plan claims data obtained from 83 Medicaid patients enrolled in CCC. A set of multivariate regression models with patient fixed effects was estimated to obtain adjusted differences in cost and acute care utilization between the months in which the patients were enrolled and the months not enrolled in CCC. The results indicate that CCC enrollment was associated with a 28% reduction in per-member-per-month total cost ($3931 observed vs. $5451 expected; P = 0.028), driven by reductions in hospitalization and emergency department visits. This finding suggests a clinical redesign focused on adolescent and young adults with complex care needs can potentially reduce total cost and acute care utilization among such patients.

Due to the prevalence, severity, and costs associated with autism spectrum disorders (ASDs), it has become a public health issue. In response, state governments have adopted ASD-specific private insurance mandates requiring coverage of ASD screening, diagnosis, and treatment. Despite rapid uptake of these laws, differences exist in the type and levels of coverage, especially for allied health services including occupational therapy. We piloted a structured legal research methodology to code ASD insurance mandates that impact allied health service provisions. State private insurance mandates were obtained from WestlawNext. A coding methodology was piloted on 14 states and included variables for age and service limits, treatments covered, and medical necessity. Coding methods were feasible and highly reliable among raters. Ten of 12 states had a coverage mandate, many with specific provisions for allied health providers. A full analysis of all 50 states is warranted to identify provisions affecting allied health providers serving individuals with ASD.

Objective The study investigated whether state mandates for private insurers to provide services for children with autism influence racial disparities in outcomes. Methods The study used 2005/2006 and 2009/2010 waves of the National Survey of Children with Special Health Care Needs. Children with a current diagnosis of autism were included in the sample. Children residing in 14 states and the District of Columbia that were not covered by the mandate in the 2005/2006 survey, but were covered in the 2009/2010 survey, served as the mandate group. Children residing in 32 states that were not covered by a mandate in either wave served as the comparison group. Outcome measures assessed included care quality, family economics, and child health. A difference-in-difference-in-differences (DDD) approach was used to assess the impact of the mandates on racial disparities in outcomes. Results Non-white children had less access to family-centered care compared to white children in both waves of data, but this difference was not apparent across mandate and comparison states as only the comparison states had significant differences. Parents of non-white children reported paying less in annual out-of-pocket expenses compared to parents of white children across waves and groups. DDD estimates did not provide evidence that the mandates had statistically significant effects on improving or worsening racial disparities for any outcome measure. Conclusions This study did not find evidence that state mandates on private insurers affected racial disparities in outcomes for children with autism.

Background: Few autism spectrum disorder (ASD) studies have estimated non-medical costs for treatment or addressed possible differences in provision of services across gender, race-ethnic, age or demographic or expenditure categories, especially among adults., Methods: The California Department of Developmental Services (CDDS) provides services to residents with developmental disabilities. CDDS provided aggregate data on primarily non-medical spending for fiscal year 2012-2013 for persons with ASD with or without intellectual disability (ID) (main sample, n = 42,274), and two sub-samples: ASD only (n = 30,164), and ASD+ID (n = 12,110). Demographic variables included sex, age and race-ethnicity. Spending categories included Employment Support, Community Care Facilities, Day Care, Transportation, and in-home and out-of-home Respite., Results: Per-person spending for males and females were approximately the same: $10,488 and $10,791 for males and females for ages 3-17 and $26,491 and $26,627 for ages 18+. Among race/ethnicity categories, the ranking from highest to lowest among ages 3-17 was white non-Hispanics ($11,480), Asian non-Hispanics ($11,036), "Others" ($11,031), Hispanics ($9,571), and African-American non-Hispanics ($9,482). For ages 18+, the ranking was whites ($31,008), African-Americans ($26,831), "Others" ($25,395), Asians ($22,993), and Hispanics ($18,083). The ASD+ID sub-sample exerted disproportionate influence on findings from the main sample for persons 18+. Combining all ages, the top two expenditure categories for per-person spending were Community Care Facilities ($43,867) and Day Care ($11,244). For most adult age groups, the percentage of recipients participating were highest for Day Care (44.9% - 62.4%) and Transportation (38.6% - 50.9%). Per-person spending for Day Care, Transportation, and Employment Support was relatively low for children but relatively high for adults., Conclusion: White non-Hispanics received the highest per-person spending and Hispanics among the least. Amounts within spending categories varied considerably across age groups. Our estimates may be useful as baseline measures for stakeholders preparing for increasing ASD prevalence, especially among adults.

Objective: Families raising children with autism contribute significant amounts to the cost of care. In this era of health care reform, families have more insurance choices, but people are unfamiliar with health insurance terms. This study uses 2 national data sets to examine health insurance ratings from parents raising children with autism and child expenditures to explore how these measures align., Methods: Children with autism who met criteria for special health care needs and were continuously insured were examined. Data from the National Survey of Children With Special Health Care Needs 2009-2010 were used to examine parent report of adequate insurance (n = 3702). Pooled data from the Medical Expenditure Panel Survey 2002-2011 were used to examine expenditures (n = 346). Types of health insurance included private alone, Medicaid alone, and combined private and wrap-around Medicaid., Results: Having Medicaid doubled the odds of reporting adequate insurance compared with private insurance alone (P < .0001), and children on Medicaid had the lowest out-of-pocket costs ($150, P < .0001). Children covered by combined private and wrap-around Medicaid had the highest total expenditures ($11 596, P < .05) and the highest expenditures paid by their insurance ($10 638, P < .05)., Conclusions: These findings highlight a mismatch between parent ratings of insurance adequacy, child expenditures, and relative financial burden. Findings generate a number of questions to address within single sources of data. By elaborating the frameworks families use to judge the adequacy of their insurance, future research can develop policy strategies to improve both their satisfaction with their insurance coverage and the service use of children with autism., (Copyright © 2016 by the American Academy of Pediatrics.)

We have previously shown in two randomized clinical trials that environmental enrichment is capable of ameliorating symptoms of autism spectrum disorder (ASD), and in the present study, we determined whether this therapy could be effective under real-world circumstances. 1,002 children were given daily Sensory Enrichment Therapy, by their parents, using personalized therapy instructions given over the Internet. Parents were asked to assess the symptoms of their child every 2 weeks for up to 7 months. An intention-to-treat analysis showed significant overall gains for a wide range of symptoms in these children, including learning, memory, anxiety, attention span, motor skills, eating, sleeping, sensory processing, self-awareness, communication, social skills, and mood/autism behaviors. The children of compliant caregivers were more likely to experience a significant improvement in their symptoms. The treatment was effective across a wide age range and there was equal progress reported for males and females, for USA and international subjects, for those who paid and those who did not pay for the therapy, and for individuals at all levels of initial symptom severity. Environmental enrichment, delivered via an online system, therefore appears to be an effective, low-cost means of treating the symptoms of ASD., Competing Interests: Eyal Aronoff is a founder and the majority shareholder of Mendability, LLC, which funded this project, and Robert Hillyer is an employee of Mendability, LLC. Michael Leon is an independent researcher with no financial ties to Mendability.

Background: Autism is associated with impairments that have life-time consequences for diagnosed individuals and a substantial impact on families. There is growing interest in early interventions for children with autism, yet despite the substantial economic burden, there is little evidence of the cost-effectiveness of such interventions with which to support resource allocation decisions. This study reports an economic evaluation of a parent-mediated, communication-focused therapy carried out within the Pre-School Autism Communication Trial (PACT)., Methods: 152 pre-school children with autism were randomly assigned to treatment as usual (TAU) or PACT + TAU. Primary outcome was severity of autism symptoms at 13-month follow-up. Economic data included health, education and social services, childcare, parental productivity losses and informal care., Results: Clinically meaningful symptom improvement was evident for 53 % of PACT + TAU versus 41 % of TAU (odds ratio 1.91, p = 0.074). Service costs were significantly higher for PACT + TAU (mean difference £4,489, p < 0.001), but the difference in societal costs was smaller and non-significant (mean difference £1,385, p = 0.788) due to lower informal care rates for PACT + TAU., Conclusions: Improvements in outcome generated by PACT come at a cost. Although this cost is lower when burden on parents is included, the cost and effectiveness results presented do not support the cost-effectiveness of PACT + TAU compared to TAU alone., Trial Registration: Current Controlled Trials ISRCTN58133827.

Few US estimates of the economic burden of autism spectrum disorders (ASD) are available and none provide estimates for 2015 and 2025. We forecast annual direct medical, direct non-medical, and productivity costs combined will be $268 billion (range $162-$367 billion; 0.884-2.009 % of GDP) for 2015 and $461 billion (range $276-$1011 billion; 0.982-3.600 % of GDP) for 2025. These 2015 figures are on a par with recent estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed the costs of stroke and hypertension. If the prevalence of ASD continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025.

Novel management strategies for autism spectrum disorder (ASD) propose providing interventions before diagnosis. We performed a cost-effectiveness analysis comparing the costs and dependency-free life years (DFLYs) generated by pre-diagnosis intensive Early Start Denver Model (ESDM-I); pre-diagnosis parent-delivered ESDM (ESDM-PD); and the Ontario Status Quo (SQ). The analyses took government and societal perspectives to age 65. We assigned probabilities of Independent, Semi-dependent or Dependent living based on projected IQ. Costs per person (in Canadian dollars) were ascribed to each living setting. From a government perspective, the ESDM-PD produced an additional 0.17 DFLYs for $8600 less than SQ. From a societal perspective, the ESDM-I produced an additional 0.53 DFLYs for $45,000 less than SQ. Pre-diagnosis interventions targeting ASD symptoms warrant further investigation.

Background: The prevalence of Autism Spectrum Disorder (ASD) has increased dramatically, with one in every 68 children in the U.S. currently diagnosed with ASD. Medicaid is the primary public funder of health care services for individuals with ASD. One mechanism state Medicaid agencies can use to craft ASD-specific services is a 1915(c) waiver., Objective: This study investigated what state policy makers perceived to be primary success factors and barriers to adopting an ASD specific 1915(c) waiver, as well as what services and supports are available in each state for children and transition-age youth with ASD., Methods: Data were collected by contacting state Medicaid directors via email with an electronic survey, with an 84% response rate., Results: Support from state legislators and parents and family members were the primary success factors in adopting an ASD specific waiver. The primary barrier was insufficient funding. States not adopting an ASD specific waiver also perceived that children and youth with ASD were served sufficiently well through other Medicaid benefits. Analysis of specific services indicated that the majority of states provide their services to children and transition age youth with ASD through a 1915(c) waiver for individuals with intellectual or developmental disabilities, often coupled with an ASD specific waiver for children, another 1915(c) waiver for children, and/or a another 1915(c) waiver, most often for children with serious emotional disturbance., Conclusion: Further research is needed to determine which approach(es) is most effective in enhancing access and improving outcomes for children and youth with ASD., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Autism spectrum disorder is a complex condition that requires specialised care. Knowledge of the costs of autism spectrum disorder, especially in comparison with other conditions, may be useful to galvanise policymakers and leverage investment in education and intervention to mitigate aspects of autism spectrum disorder that negatively impact individuals with the disorder and their families. This article describes the services and associated costs for four groups of individuals: adolescents with autistic disorder, adolescents with other autism spectrum disorders, adolescents with other special educational needs and typically developing adolescents using data from a large, well-characterised cohort assessed as part of the UK Special Needs and Autism Project at the age of 12 years. Average total costs per participant over 6 months were highest in the autistic disorder group (£11,029), followed by the special educational needs group (£9268), the broader autism spectrum disorder group (£8968) and the typically developing group (£2954). Specialised day or residential schooling accounted for the vast majority of costs. In regression analysis, lower age and lower adaptive functioning were associated with higher costs in the groups with an autism spectrum disorder. Sex, ethnicity, number of International Classification of Diseases (10th revision) symptoms, autism spectrum disorder symptom scores and levels of mental health difficulties were not associated with cost., (© The Author(s) 2014.)

Context: Epidemiological studies and animal models demonstrate that endocrine-disrupting chemicals (EDCs) contribute to cognitive deficits and neurodevelopmental disabilities., Objective: The objective was to estimate neurodevelopmental disability and associated costs that can be reasonably attributed to EDC exposure in the European Union., Design: An expert panel applied a weight-of-evidence characterization adapted from the Intergovernmental Panel on Climate Change. Exposure-response relationships and reference levels were evaluated for relevant EDCs, and biomarker data were organized from peer-reviewed studies to represent European exposure and approximate burden of disease. Cost estimation as of 2010 utilized lifetime economic productivity estimates, lifetime cost estimates for autism spectrum disorder, and annual costs for attention-deficit hyperactivity disorder. Setting, Patients and Participants, and Intervention: Cost estimation was carried out from a societal perspective, ie, including direct costs (eg, treatment costs) and indirect costs such as productivity loss., Results: The panel identified a 70-100% probability that polybrominated diphenyl ether and organophosphate exposures contribute to IQ loss in the European population. Polybrominated diphenyl ether exposures were associated with 873,000 (sensitivity analysis, 148,000 to 2.02 million) lost IQ points and 3290 (sensitivity analysis, 3290 to 8080) cases of intellectual disability, at costs of €9.59 billion (sensitivity analysis, €1.58 billion to €22.4 billion). Organophosphate exposures were associated with 13.0 million (sensitivity analysis, 4.24 million to 17.1 million) lost IQ points and 59 300 (sensitivity analysis, 16,500 to 84,400) cases of intellectual disability, at costs of €146 billion (sensitivity analysis, €46.8 billion to €194 billion). Autism spectrum disorder causation by multiple EDCs was assigned a 20-39% probability, with 316 (sensitivity analysis, 126-631) attributable cases at a cost of €199 million (sensitivity analysis, €79.7 million to €399 million). Attention-deficit hyperactivity disorder causation by multiple EDCs was assigned a 20-69% probability, with 19 300 to 31 200 attributable cases at a cost of €1.21 billion to €2.86 billion., Conclusions: EDC exposures in Europe contribute substantially to neurobehavioral deficits and disease, with a high probability of >€150 billion costs/year. These results emphasize the advantages of controlling EDC exposure.

Context: Rapidly increasing evidence has documented that endocrine-disrupting chemicals (EDCs) contribute substantially to disease and disability., Objective: The objective was to quantify a range of health and economic costs that can be reasonably attributed to EDC exposures in the European Union (EU)., Design: A Steering Committee of scientists adapted the Intergovernmental Panel on Climate Change weight-of-evidence characterization for probability of causation based upon levels of available epidemiological and toxicological evidence for one or more chemicals contributing to disease by an endocrine disruptor mechanism. To evaluate the epidemiological evidence, the Steering Committee adapted the World Health Organization Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group criteria, whereas the Steering Committee adapted definitions recently promulgated by the Danish Environmental Protection Agency for evaluating laboratory and animal evidence of endocrine disruption. Expert panels used the Delphi method to make decisions on the strength of the data., Results: Expert panels achieved consensus at least for probable (>20%) EDC causation for IQ loss and associated intellectual disability, autism, attention-deficit hyperactivity disorder, childhood obesity, adult obesity, adult diabetes, cryptorchidism, male infertility, and mortality associated with reduced testosterone. Accounting for probability of causation and using the midpoint of each range for probability of causation, Monte Carlo simulations produced a median cost of €157 billion (or $209 billion, corresponding to 1.23% of EU gross domestic product) annually across 1000 simulations. Notably, using the lowest end of the probability range for each relationship in the Monte Carlo simulations produced a median range of €109 billion that differed modestly from base case probability inputs., Conclusions: EDC exposures in the EU are likely to contribute substantially to disease and dysfunction across the life course with costs in the hundreds of billions of Euros per year. These estimates represent only those EDCs with the highest probability of causation; a broader analysis would have produced greater estimates of burden of disease and costs.

As of 2014, 37 states have passed mandates requiring many private health insurance policies to cover diagnostic and treatment services for autism spectrum disorders (ASDs). We explore whether ASD mandates are associated with out-of-pocket costs, financial burden, and cost or insurance-related problems with access to treatment among privately insured children with special health care needs (CSHCNs). We use difference-in-difference and difference-in-difference-in-difference approaches, comparing pre--post mandate changes in outcomes among CSHCN who have ASD versus CSHCN other than ASD. Data come from the 2005 to 2006 and the 2009 to 2010 waves of the National Survey of CSHCN. Based on the model used, our findings show no statistically significant association between state ASD mandates and caregivers' reports about financial burden, access to care, and unmet need for services. However, we do find some evidence that ASD mandates may have beneficial effects in states in which greater percentages of privately insured individuals are subject to the mandates. We caution that we do not study the characteristics of ASD mandates in detail, and most ASD mandates have gone into effect very recently during our study period.

Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area., Methods: An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity., Findings: The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism., Conclusions: For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards., (© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

There is a concern that the allocation of autism spectrum disorder (ASD) research funding may be misallocating resources, overemphasizing basic science at the expense of translational and clinical research. Anthony Bailey has proposed that an economic evaluation of autism research funding allocations could be beneficial for funding agencies by identifying under- or overfunded areas of research. In response to Bailey, we illustrate why economics cannot provide an objective, technical solution for identifying the "best" allocation of research resources. Economic evaluation has its greatest power as a late-stage research tool for interventions with identified objectives, outcomes, and data. This is not the case for evaluating whether research areas are over- or underfunded. Without an understanding of how research funding influences the likelihood and value of a discovery, or without a statement of the societal objectives for ASD research and level of risk aversion, economic analysis cannot provide a useful normative evaluation of ASD research., (© 2014 International Society for Autism Research, Wiley Periodicals, Inc.)

Adults with autism face high rates of unemployment. Supported employment enables individuals with autism to secure and maintain a paid job in a regular work environment. The objective of this study was to assess the cost-effectiveness of supported employment compared with standard care (day services) for adults with autism in the United Kingdom. Thus, a decision-analytic economic model was developed, which used outcome data from the only trial that has evaluated supported employment for adults with autism in the United Kingdom. The main analysis considered intervention costs, while cost-savings associated with changes in accommodation status and National Health Service and personal social service resource use were examined in secondary analyses. Two outcome measures were used: the number of weeks in employment and the quality-adjusted life year. Supported employment resulted in better outcomes compared with standard care, at an extra cost of £18 per additional week in employment or £5600 per quality-adjusted life year. In secondary analyses that incorporated potential cost-savings, supported employment dominated standard care (i.e. it produced better outcomes at a lower total cost). The analysis suggests that supported employment schemes for adults with autism in the United Kingdom are cost-effective compared with standard care. Further research needs to confirm these findings., (© The Author(s) 2013.)

This study explores the association between school transition age and healthcare expenditures for children with autism. The paper explores three questions: (1) What is the composition of services overall and paid out-of-pocket and does it differ at transition? (2) Do transition age children have higher total and out-of-pocket health care expenditures than other children with autism? (3) Does the effect of transition differ for vulnerable families who often experience problems accessing care? Pooled data from the Medical Expenditure Panel Survey 2000-2009 on children under 21 years of age with autism (n = 337) were used to describe expenditures for services by source of payment and estimate two-part models of total and out-of-pocket expenditures as a function of child transition age (5, 6, 11, 14) and other child and family characteristics. Median total annual expenditures for health care among children with autism are $2,400; median out-of-pocket expenditures are $390. The majority of total expenditures are devoted to outpatient medical services; nearly half of family out-of-pocket spending is devoted to prescription medications. When children are transition age, a larger proportion of both overall and out-of-pocket expenditures go toward ambulatory therapy, while a smaller proportion of out-of-pocket expenditures are devoted to prescription medications compared to children of other ages. Transition age children from vulnerable families experience a drop in expenditures that families with more resources fill through out-of-pocket spending. Findings raise questions about the dimensions of care for children with autism. Schools may be better positioned than health insurance to foster continuity of care.

This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability-procedural fairness, value pluralism, and substantive fairness-and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government's role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision., (© The Author(s) 2014.)

We examined (a) the associations between Medicaid home and community-based waiver participation and service use and expenditures among children with ASD; and (b) how states' waiver spending moderates these effects. We used 2005 Medicaid claims to identify a sample of children with autism spectrum disorder (ASD). We selected two comparison groups who had no waiver participation: (a) children who were eligible for Medicaid through disability (disability group), and (b) children who had at least one inpatient/long-term care (IP/LT) episode (IP/LT group). Waiver participants were less likely to use IP/LT services and had lower associated expenditures than the disability group. As states' waiver spending increased, waiver participants became increasingly less likely to use IP/LT services. Waiver participants had more outpatient visits and associated expenditures; this difference increased as state waiver spending increased. Compared with the IP/LT group, waiver participants had lower IP/LT expenditures, more outpatient visits, and associated expenditures. Higher state waiver generosity increased this effect on outpatient visits and expenditures.

Introduction: Current evidence suggests that Social Stories can be effective in tackling problem behaviours exhibited by children with autism spectrum disorder. Exploring the meaning of behaviour from a child's perspective allows stories to provide social information that is tailored to their needs. Case reports in children with autism have suggested that these stories can lead to a number of benefits including improvements in social interactions and choice making in educational settings., Methods and Analysis: The feasibility of clinical and cost-effectiveness of a Social Stories toolkit will be assessed using a randomised control framework. Participants (n=50) will be randomised to either the Social Stories intervention or a comparator group where they will be read standard stories for an equivalent amount of time. Statistics will be calculated for recruitment rates, follow-up rates and attrition. Economic analysis will determine appropriate measures of generic health and resource use categories for cost-effectiveness analysis. Qualitative analysis will ascertain information on perceptions about the feasibility and acceptability of the intervention., Ethics and Dissemination: National Health Service Ethics Approval (NHS; ref 11/YH/0340) for the trial protocol has been obtained along with NHS Research and Development permission from Leeds and York Partnership NHS Foundation Trust. All adverse events will be closely monitored, documented and reported to the study Data Monitoring Ethics Committee. At least one article in a peer reviewed journal will be published and research findings presented at relevant conferences., Trial Registration Number: ISRCTN96286707., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

This study investigated families' experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the $25,000 annual allocation. Key findings included families' preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents' placed on the personalities and interpersonal skills of providers. Parents' descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children's HCBS autism waiver program.

This study aimed to identify the factors associated with participation in employment for high school leavers with autism. A secondary data analysis of the National Longitudinal Transition Study 2 (NLTS2) data was performed. Potential factors were assessed using a weighted multivariate logistic regression. This study found that annual household income, parental education, gender, social skills, whether the child had intellectual disability, whether the child graduated from high school, whether the child received career counseling during high school, and whether the child's school contacted postsecondary vocational training programs or potential employers were the significant factors associated with participation in employment. These findings may have implications for professionals who provide transition services and post-secondary programs for individuals with autism.

Background: There has been a significant increase in the prevalence of autism in the USA in the past few decades. The purpose of this study was to provide recent estimates of psychotropic drug use and costs among individuals with autism enrolled in Medicaid programme., Method: A cross-sectional analysis of 2007 Mississippi (MS) Medicaid fee-for-service (FFS) programme administrative-claims data was performed. Study sample included recipients (<65 years) who had a medical services claim with a diagnosis of autism in 2007. Psychotropic drug patterns of use and costs were studied. Factors predicting the use of psychotropic drugs were identified using logistic regression analyses. Average number and cost of psychotropic drug claims per recipient were reported. Costs were reported from the perspective of MS Medicaid., Results: In 2007, there were 1330 recipients with a diagnosis of autism in MS Medicaid FFS programme. Among these recipients, 66.32% had a claim for psychotropic drug during the year. Roughly 39% of recipients with autism had a claim for antipsychotics, 31.58% for stimulants, 19.55% for antidepressants, 19.40% for other psychotropics and 14.81% for anxiolytics/hypnotics/sedatives. Results from regression analyses highlighted variation in psychotropic drug use by demographic and co-morbid factors. There were a total of 12,618 claims for psychotropic drugs filled by recipients with autism in 2007, at an average of 14 (±12) claims per recipient. The total cost of these claims paid for by MS Medicaid FFS programme was ∼$2 million. Antipsychotics accounted for more than half (∼58%) of the total costs, and had the highest average cost per claim ($291 ± 205)., Conclusions: The results of this study indicate a high use of psychotropic drugs among individuals with autism enrolled in a state Medicaid programme. There is an urgent need to study the risk-benefit profile of these drugs in this growing population. Psychotropic drug use was found to vary by demographic and co-morbid factors. Among the different classes of psychotropic drugs, antipsychotics were the most commonly used and had the highest cost per claim., (© 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.)

We examined the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism. Child and family data were from the 2005-2006 National Survey of Children with Special Health Care Needs (n  =  2,011 insured children with autism). State characteristics were from public sources. The 4 outcomes included any out-of-pocket health care expenditures during the past year, expenditure amount, expenditures as a proportion of family income, and whether additional income was needed to care for a child. We modeled the association between state per capita Medicaid spending for children with disabilities and families' financial burden, controlling for child, family, and state characteristics. Overall, 78% of families raising children with autism had health care expenditures for their child for the prior 12 months; 42% reported expenditures over $500, with 34% spending over 3% of their income. Families living in states with higher per capita Medicaid spending for children with disabilities were significantly less likely to report financial burden. There is a robust relationship between state Medicaid spending for children with disabilities and the financial burdens incurred by families raising children with autism.

This paper examines the role of state residence and Medicaid reimbursement rates in explaining the relationship between having autism and access to care for children. Three questions are addressed: (1) Is there variation across states in the relationship between having autism and access to care? (2) Does taking account of state residence explain a significant amount of the variation in this relationship? (3) Does accounting for Medicaid reimbursement rates enhance our understanding of this relationship? Data from the 2005 National Survey of Children with Special Health Care Needs were combined with state characteristics to estimate a hierarchical generalized linear model of the association between state residence, Medicaid reimbursement rate and problems accessing care for children with special health care needs with and without autism. Findings indicate there is significant variation between states in the relationship between having autism and problems accessing care, and accounting for state residence explains a significant amount of variation in the model. Medicaid reimbursement rates have an independent effect on access to care for children with autism: when families raising children with autism live in states with higher reimbursement rates, they have lower odds of experiencing problems accessing care. The state context in which families live impacts access to care for children with autism. Moreover, when families live in states with higher Medicaid reimbursement rates, they are less likely to experience problems getting care. The value of this analysis is that it helps identify where to look for strategies to improve access.