Table 3.

Study characteristics

Authous (Year)	Country	Study aim	Data source	Sample size (age)	Study perspective	Type of health services	Costs included in the study			Period of the study
							Average direct costs per person	Average indirect costs per person	Average total costs per person
Jarbrink and Knapp (2001) [23]	UK	To estimate the economic consequences of autism in the UK	Secondary analysis of data	Autism with additional learning disabilities	Patient Provider	Hospital/inpatient services Medication use Other	OOP: $67,098 Provider spending: $221,027	NR	NR	Lifetime
				High functioning autism			OOP: NR Provider spending: $152,717	$298,256	NR
Jarbrink (2003) [24]	USA	To show the major cost drivers among children with ASD	Survey (Respondents: parents)	N = 17 (4–10 years)	Provider	Early intervention Health services Medication use	Provider spending: $416	NR	NR	Weekly
Liptak et al. (2006) [25]	USA	To compare healthcare expenditures between children with ASD and other children with and without disabilities	Survey (Respondents: parents)	N = 100 (< 17 years old)	Patient	Home/community-based/outpatient services Hospital/inpatient services Medication use Respite care	OOP: $898	NR	NR	Annual costs
Flanders (2007) [26]	USA	To compare direct costs of treatment of children with ASD, asthma, and diabetes	Secondary analysis of data (California Medicaid Medical database)	N = 731 (3–17 years)	Payer	Hospital/inpatient services Outpatient services Medication use	Insurer spending: $6436	NR	NR	Annual costs
Jarbrink (2007) [27]	UK	To show the major cost drivers among children with ASD	Survey (Respondents: parents)	N = 55 (< 18 years old)	Provider	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Provider spending: $3996	NR	NR	Annual costs
Leslie et al. (2007) [28]	USA	To examine the healthcare expenditures associated with ASDs in medical care settings	Secondary data analysis (Administrative claims database)	N = 613 (<  17 years old)	Payer Patient	Hospital/inpatient services Outpatient services Medication use	OOP + Insurer spending: $8531	NR	NR	Annual costs
Sharpe and Baker (2007) [29]	USA	To identify factors associated with financial problems in families that have a child with autism	Survey (Respondents: parents and care givers)	N = 333 (< 19 years old)	Patient	Hospital/inpatient services Outpatient services Respite care Medication use Other	NR	NR	NR	Annual costs
Shimabukuro et al. (2008) [30]	USA	To estimate medical expenditures for children with ASD who receive employer-based health insurance	Secondary analysis of data (employer-based health insurance claims: the MarketScan research databases)	N = 3481 (1–21 years)	Payer Patient	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	OOP: $805 Insurer spending: $10,006	NR	NR	Annual costs
Knapp et al. (2009) [13]	UK	To estimate the costs of ASDs in the UK	Secondary analysis of data	Children with intellectual disability	Provider	Hospital/inpatient services Respite care Other	Provider spending: $11,946	NR	NR	Annual costs
				Children without intellectual disability			Provider spending: $30,936	NR	NR
Young et al. (2009) [31]	USA	To examine the healthcare expenditures associated with ASDs in medical care settings.	Survey	N = 113 (2.5–21 years)	Patient	Hospital/inpatient services Outpatient services Respite care Medication use Other	OOP: $882	NR	NR	Annual costs
Wang et al. (2010) [32]	USA	To examine trends in health care expenditures associated with ASDs in state Medicaid programs	Secondary analysis of data (Medicaid data)	N = 69,542 (> 17 years old)	Payer	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Insurer spending: $33,360	NR	NR	Annual costs
Barrett et al. (2012) [33]	UK	To determine family out-of-pocket expenses and productivity losses, and explore the relationship between family characteristics and costs.	Randomized controlled trial	N = 152 (2–4 years)	Patient Provider	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	OOP: $446 Provider spending: $2240	$539	$3792	6 months
Parish et al. (2012) [34]	USA	To investigate the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism.	Secondary analysis of data (National Survey of Children with Special Healthcare Needs)	N = 2082 (<  18 years old)	Patients	NR	OOP: $690	NR	NR	Annual costs
Peacock et al. (2012) [10]	USA	To compare medical expenditures between children with ASDs and without ASDs	Secondary analysis of data (Health insurance claims: MarketScan Medicaid Multi-State Databases)	N = 8398 (2–17 years)	Payer	Hospital/inpatient services outpatient services Medication use	Insurer spending: $14,777	NR	NR	Annual costs
Wang et al. (2012) [35]	China	To determine the health expenses incurred by families of children with ASD and those expenses in relation to total patient income and expenditures	Survey (Respondents: parents)	N = 290 (1–15 years)	Patient	Home/community-based/outpatient services Respite care Medication use Other	OOP: $2936	NR	NR	Annual costs
Al-Farsi et al. (2013) [36]	Oman	To measure medical expenditures in children with ASDs	Survey (Respondents: parents)	N = 150 (< 15 years old)	Patient	Home/community-based/outpatient services Respite care Medication use Other	OOP:$346	$961	NR	Monthly
Van Steensel et al. (2013) [37]	USA	To measure the societal costs of children with high-functioning ASD and comorbid anxiety disorder(s)	Survey (Respondents: parents)	N = 194 (7–18 years)	Patient	Home/community-based/outpatient services Respite care Medication use Other	OOP: $16,806	NR	NR	Annual costs
Raz et al. (2013) [38]	Israel	To measure the level of OOP expenditure for health services by families with autistic children	Survey (Respondents: parents)	N = 204 (4–10 years)	Patient	Home/community-based/outpatient services Respite care Medication use Other	OOP: $9930	NR	NR	Annual costs
Buescher et al. (2014) [9]	UK	To estimate lifetime societal economic costs among individuals with ASD	NR	NR	Patient	Medical services	Adults with ID: $8738 Adults without ID:$27,265	NR	NR	Annual costs
				NR	Patient	Medical services	Children with ID:$1578 Children without ID: $1030	NR	NR	Annual costs
	USA			NR	Patient	Medical services	Adults with ID: $32,630 Adults without ID:$16,316	NR	NR	Annual costs
				NR	Patient	Medical	Children with ID: $18,645 Children without ID: $9323	NR	NR	Annual costs
Horlin et al. (2014) [14]	Australia	To compare expenses between families whose children receiving immediate versus delayed diagnoses	Survey (Respondents: parents)	N = 521 (< 18 years old)	Patient	All healthcare	OOP: $6937	30,422 (loss of income of the parents and caregivers)	35,593	Annual costs
Lavelle et al. (2014) [12]	USA	To estimate the associations between ASD diagnoses and service use, caregiver time, and cost outcomes	Secondary analysis of data (National Health Interview Survey) and a study-specific survey	N = 258 (3–17 years old)	Patient Payer	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Insurer spending: $3618 OOP: $218	NR	NR	Annual costs
Thomas et al. (2014) [39]	USA	To investigate the association between school transition age and healthcare expenditures for children with ASD	Secondary analysis of data (Pooled data from the Medical Expenditure Panel Survey)	N = 337 (<  21 years old)	Patient	All healthcare	Median OOP: $490	NR	NR	Annual costs
Barrett et al. (2015) [40]	UK	To describe the services and associated costs for individual with ASD and	Cohort of adolescents with ASD and other special needs	N = 51(adolescents with autistic disorder) (9–14 years)	Provider	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Provider spending: $1231	NR	NR	6 months
				N = 45 (adolescents with other ASDs) (9–14 years)			Provider spending: $1999	NR	NR
Byford et al. (2015) [41]	UK	To investigate the cost-effectiveness of a communication-focused therapy for pre-school children with ASD	Cohort study	N = 77 (PACT+ treatment as usual) (2–4 years)	Provider Patient	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	OOP: $2896 Provider spending: $16,523	$1223	$20,645	13 months
				N = 75 (treatment as usual) (2–4 years)	Provider Patient		OOP: $1990 Provider spending: $5180	$842	$7923
Parish et al. (2015) [42]	USA	To investigate the relationship between family financial burden and children’s health	Secondary analysis of data (Pooled 2000–2009 Medical Expenditure Panel Survey data)	N = 316 (<  18 years old)	Patient	NR	OOP: $904	NR	NR	Annual costs
Thomas et al. (2016) [43]	USA	To examine expenditures according to types of health insurance included private alone, Medicaid alone, and combined private and wrap-around Medicaid	Secondary analysis of data (Pooled data from the Medical Expenditure Panel Survey)	N = 346 (< 18 years old)	Patient	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	OOP for Medicaid insured children: $156 OOP for private insured children: $1579 Medicaid spending: $8383 Private insurance spending: $3736	NR	NR	Annual costs
Barry et al. (2017) [44]	USA	To measure whether implementing autism mandates altered service use or spending among commercially insured children with ASD	Secondary analysis of data (Health insurance claim: Data from three national insurers)	N = 106,977 (< 21 years old)	Payer	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Mandate eligible: $767 Mandate ineligible: $600	NR	NR	Monthly
Chang et al. (2018) [45]	Taiwan	To compare the differences in dental utilization and expenditure between children and adolescents with and without ASD	Secondary analysis of data (Health insurance claim: The database of the National Health Research Institutes)	N = 1305 (< 18 years old)	Payer	Dental treatment	Insurer spending: $110	NR	NR	Annual costs
Vohra et al. (2017) [46]	USA	To investigate the prevalence and association of comorbidities with healthcare utilization and expenditures of fee-for service enrolled adults with and without ASD	Secondary analysis of data (Health insurance claim: Medicaid data)	N = 1772 (22–64 years)	Payer	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Insurer spending: $16,928	NR	NR	Annual costs
Candon et al. (2019) [47]	USA	To investigate whether mandates have heterogeneous effects on healthcare expenditure by insures and individuals with ASD	Secondary analysis of data (Health insurance claim)	N = 106,977 (< 21 years old)	Patient Payer	NR	OOP: $124 Insurer spending: $453	NR	NR	Monthly
Hong et al. (2019) [48]	South Korea	To estimate the economic burden of ASD in South Korea	Secondary analysis of data (Health insurance claim: The National Health Insurance Service)	N = 5653 (1–89 years)	Patient	Hospital/inpatient services Home/community-based/outpatient services	NR	NR	$2496	Annual costs
Li et al. (2019) [49]	Taiwan	To examine the cost and utilization of rehabilitation resources among children with ASD	Secondary analysis of data (Health insurance claim: The National Health Insurance Research Database)	N = 3227 (3–12 years)	Payer	Home/community-based/outpatient services	Insurer spending: $2100	NR	NNRM	Annual costs
Roddy and O’Neill (2019) [50]	Ireland	To measure the societal cost of childhood ASDs	Survey (Respondents: parents)	N = 222 (2–18 years)	Patient	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	OOP: $2756	NR	NR	Annual costs
Zerbo et al. (2019) [11]	USA	To compare healthcare utilization patterns and cost among insured adults with ASD, adults with ADHD and adults with neither condition	Secondary analysis of data (Administrative claim data: The Kaiser Permanente Northern California (KPNC) database	N = 1507 (> 18 years)	Provider	Hospital/inpatient services Home/community-based/outpatient services Respite care Other	Provider spending: $7889	NR	NNRM	Annual costs
Zuvekas et al. (2021) [51]	USA	To estimate healthcare costs for US children with ASD	Secondary analysis of data (Two different surveys)	N = 45,944 (3–17 years)	Patient	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Medical Expenditure Panel Survey (MEPS: $4163 National Health Interview Survey (NHIS): $5955	NR	NR	Annual costs
Höfer et al. (2022) [52]	Germany	To estimate health service use and associated costs in children, adolescents and adults with ASD with and without intellectual disability	Survey (Respondents: parents)	N = 385 (4–67 years)	Patients	Hospital/inpatient services Home/community-based/outpatient services Respite care Other	$4208	NR	NR	Annual costs
Ames et al. (2021) [53]	USA	To calculate healthcare service utilization and cost among transition-age youth with ASD and other special healthcare needs	Secondary analysis of data (Administrative claim: Kaiser Permanente Northern California)	N = 4123 (14–25 years)	Provider	Hospital/inpatient services Home/community-based/outpatient services Respite care Medication use Other	Provider spending: $5302	NR	NR	Annual costs

All costs are in U.S. dollars and are adjusted to reflect 2021 USD

ADHD Attention-Deficit and Hyperactivity Disorder; ASD Autism spectrum disorder; NR Not reported; UK United Kingdom; USA United States of America; OPP out of pocket payment