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.
Citing Articles
Investigating Social Competence in a Pilot Randomized Clinical Trial of a Theatre-Based Intervention Enhanced for Adults with Autism Spectrum Disorder.
Corbett B, Key A, Klemencic M, Muscatello R, Jones D, Pilkington J
J Autism Dev Disord. 2023; 55(1):130-146.
PMID: 38109034
PMC: 11182891.
DOI: 10.1007/s10803-023-06214-0.
A Scoping Review of Health Research with Racially/Ethnically Minoritized Adults with Intellectual and Developmental Disabilities.
Williamson H, Chico-Jarillo T, Sasse S, Rennie L, Etcitty J, Howe C
Dev Disabil Netw J. 2023; 3(2).
PMID: 37829932
PMC: 10569236.
Toward Equity in Research on Intellectual and Developmental Disabilities.
Kover S, Abbeduto L
Am J Intellect Dev Disabil. 2023; 128(5):350-370.
PMID: 37644865
PMC: 10786180.
DOI: 10.1352/1944-7558-128.5.350.
Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers.
Reyes N, Lindly O, Chavez A, Folan A, Macias K, Smith K
Res Autism Spectr Disord. 2022; 51:38-48.
PMID: 35198038
PMC: 8862686.
DOI: 10.1016/j.rasd.2018.04.001.
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018.
Maenner M, Shaw K, Bakian A, Bilder D, Durkin M, Esler A
MMWR Surveill Summ. 2021; 70(11):1-16.
PMID: 34855725
PMC: 8639024.
DOI: 10.15585/mmwr.ss7011a1.
Autism Tsunami: the Impact of Rising Prevalence on the Societal Cost of Autism in the United States.
Blaxill M, Rogers T, Nevison C
J Autism Dev Disord. 2021; 52(6):2627-2643.
PMID: 34278527
PMC: 9114071.
DOI: 10.1007/s10803-021-05120-7.
Clinical Profiles of Black and White Children Referred for Autism Diagnosis.
Fombonne E, Zuckerman K
J Autism Dev Disord. 2021; 52(3):1120-1130.
PMID: 33871736
DOI: 10.1007/s10803-021-05019-3.
Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children.
Bilaver L, Sobotka S, Mandell D
J Autism Dev Disord. 2020; 51(9):3341-3355.
PMID: 33219917
PMC: 8137720.
DOI: 10.1007/s10803-020-04797-6.
Community-based service use in preschool children with autism spectrum disorder and associations with insurance status.
Rubenstein E, Croen L, Lee L, Moody E, Schieve L, Soke G
Res Autism Spectr Disord. 2020; 66.
PMID: 32831903
PMC: 7430759.
DOI: 10.1016/j.rasd.2019.101410.
Objective Estimates of Direct-Medical Costs Among Persons Aged 3 to 38 Years With and Without Research-Defined Autism Spectrum Disorder Ascertained During Childhood: A Population-Based Birth-Cohort Study.
Leibson C, Weaver A, Myers S, Long K, Ransom J, Voigt R
Value Health. 2020; 23(5):595-605.
PMID: 32389225
PMC: 7224581.
DOI: 10.1016/j.jval.2019.12.006.
California Autism Prevalence by County and Race/Ethnicity: Declining Trends Among Wealthy Whites.
Nevison C, Parker W
J Autism Dev Disord. 2020; 50(11):4011-4021.
PMID: 32193763
PMC: 7557477.
DOI: 10.1007/s10803-020-04460-0.
Autism spectrum disorder, politics, and the generosity of insurance mandates in the United States.
Callaghan T, Sylvester S
PLoS One. 2019; 14(5):e0217064.
PMID: 31125366
PMC: 6534322.
DOI: 10.1371/journal.pone.0217064.
'How deep are your pockets?' Autoethnographic reflections on the cost of raising a child with autism.
Clasquin-Johnson M, Clasquin-Johnson M
Afr J Disabil. 2018; 7:356.
PMID: 29707517
PMC: 5913784.
DOI: 10.4102/ajod.v7i0.356.
Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample.
Zuckerman K, Lindly O, Reyes N, Chavez A, Cobian M, Macias K
J Autism Dev Disord. 2018; 48(9):3199-3209.
PMID: 29700707
PMC: 7466820.
DOI: 10.1007/s10803-018-3586-x.
Parent Expectations and Preparatory Activities as Adolescents with ASD Transition to Adulthood.
Holmes L, Kirby A, Strassberg D, Himle M
J Autism Dev Disord. 2018; 48(9):2925-2937.
PMID: 29619645
PMC: 6482840.
DOI: 10.1007/s10803-018-3545-6.
Pediatric healthcare costs for patients with 22q11.2 deletion syndrome.
Benn P, Iyengar S, Crowley T, Zackai E, Burrows E, Moshkevich S
Mol Genet Genomic Med. 2017; 5(6):631-638.
PMID: 29178641
PMC: 6234953.
DOI: 10.1002/mgg3.310.
'If I was a different ethnicity, would she treat me the same?': Latino parents' experiences obtaining autism services.
Angell A, Solomon O
Disabil Soc. 2017; 32(8):1142-1164.
PMID: 29129963
PMC: 5679110.
DOI: 10.1080/09687599.2017.1339589.
Latino Families' Experiences With Autism Services: Disparities, Capabilities, and Occupational Justice.
Angell A, Frank G, Solomon O
OTJR (Thorofare N J). 2016; 36(4):195-203.
PMID: 27585604
PMC: 5332377.
DOI: 10.1177/1539449216666062.