Timeliness of Autism Spectrum Disorder Diagnosis and Use of Services Among U.S. Elementary School–Aged Children
Open accessAbstract
OBJECTIVE: This study assessed the relationship of timeliness of autism spectrum disorder (ASD) diagnosis with current use of ASD-related services in a nationally representative sample of U.S. children. METHODS: The Centers for Disease Control's (CDC's) Survey of Pathways to Diagnosis and Services was used to assess experiences of 722 children ages six to 11 with ASD. Bivariate and multivariate analyses were used to explore associations between age at ASD diagnosis and delay in ASD diagnosis and use of health services. Health services included current use of behavioral intervention (BI) therapy, school-based therapy, complementary and alternative medicine (CAM), and psychotropic medications. RESULTS: Mean age at ASD diagnosis was 4.4 years, and mean diagnostic delay was 2.2 years. In adjusted analysis, older age at diagnosis (≥4 versus <4) was associated with lower likelihood of current BI or school-based therapy use and higher likelihood of current psychotropic medication use. Analyses that treated age at diagnosis as a continuous variable found that likelihood of current psychotropic medication use increased with older age at diagnosis. A delay of two or more years between parents' first discussion of concerns with a provider and ASD diagnosis was associated with higher likelihood of current CAM use. Likelihood of current CAM use increased as delay in diagnosis became longer. CONCLUSIONS: Both older age at diagnosis and longer delay in diagnosis were associated with different health services utilization patterns among younger children with ASD. Prompt and early diagnosis may be associated with increased use of evidence-based therapies for ASD.
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Early diagnosis and treatment have been linked to greater reduction in the core symptoms of ASD, higher likelihood of receiving behavioral therapy, and a reduction in the use of psychotropic medication.
“Early diagnosis and treatment have been linked to greater reduction in the core symptoms of ASD, higher likelihood of receiving behavioral therapy, and a reduction in the use of psychotropic medication.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [63]
The Results (page not available in our copy) link diagnosis before age four with higher behavioral-intervention use and lower psychotropic-medication use. The paper does not report whether early diagnosis and treatment produce a greater reduction in core ASD symptoms; its Introduction discusses evidence for behavioral intervention generally, not that comparative outcome. The service-use findings are associations, not evidence that early diagnosis caused the differences. (LLM, conf=0.88)
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“An investigation has demonstrated that the mean age at ASD diagnosis was 4.4 years, whereas the mean diagnostic delay was 2.2 years (4).”
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“Another limitation is that most of the studies included did not distinguish participants by ASD severity.(22,31,41,43,44,48,49) This shortcoming makes it difficult to compare the age of reported concerns and age of diagnosis, given that more severe patients are more easily recognized.”
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“, 2017) and build on work at the national level (Zuckerman et al., 2017) which document racialethnic and neighborhood inequities in access and indicate the need for strategies to reduce inequities.”
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“caregivers of school-age children with ASD reported that schools have been the primary place where behavioral services are delivered (34, 35).”
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“The median age at diagnosis for ASD is 46 - 74 months according to CDC – approx. diagnostic delay of 2.2 years on average [8] - and impacts considerable number of children [9].”
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Secci, I., Petigas, L., Cuenod, A., Klauser, P., Kapp, C., Novatti, A., & Armando, M. (2023) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2023.1151293 · Cited by 15 · see citing works
“Conversely, an earlier ASD diagnosis has shown a protective effect on depression and selfharm behaviors (22, 23), potentially enabling timely interventions and social support, and reducing the risk of traumatic experiences (24), that have been linked to mood symptoms and suicidality in ASD (25, 26).”
BackgroundBernie, C., Williams, K. J., O’Connor, B., Rogers, S. J., & May, T. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04725-8 · Cited by 14 · see citing works
Vu, M., Duhig, A. M., Tibrewal, A., Campbell, C. M., Gaur, A., Salomon, C., Gupta, A., Kruse, M., & Taraman, S. (2023) · Journal of Managed Care & Specialty Pharmacy · doi:10.18553/jmcp.2023.29.4.378 · Cited by 15 · see citing works
Early morbidities following paediatric cardiac surgery: a mixed-methods study
Brown, K., Pagel, C., Ridout, D. A., Wray, J., Tsang, V. T., Anderson, D. R., Banks, V., Barron, D. J., Cassidy, J. V., Chigaru, L., et al. (2020) · Health Services and Delivery Research · doi:10.3310/hsdr08300 · Cited by 13 · see citing works
Can stratification biomarkers address the heterogeneity of autism spectrum disorder?
Molloy, C. J., & Gallagher, L. (2021) · Irish Journal of Psychological Medicine · doi:10.1017/ipm.2021.73 · Cited by 15 · see citing works
“The identification of diagnostic and likelihood biomarkers to aid earlier diagnosis and facilitate earlier intervention would be invaluable as the average age of an autism diagnosis is still approximately 4 years of age, despite increased awareness and better approaches to diagnosis (Zuckerman et al. 2017).”
BackgroundShort report: Perceptions of causes and common beliefs of autism spectrum disorder in the U.S
Castillo, A., Cohen, S. R., Miguel, J., & Warstadt, M. F. (2019) · Research in Autism · doi:10.1016/j.rasd.2019.101472 · Cited by 13 · see citing works
Miller, H. L., Thomi, M., Patterson, R. M., & Nandy, K. (2022) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-022-05604-0 · Cited by 12 · see citing works
“Children diagnosed after the age of 4 are less likely to receive evidence-based behavioral interventions and more likely to use psychotropic medications or complementary alternative medicine than children diagnosed early (Zuckerman et al., 2016).”
BackgroundCritical periods and Autism Spectrum Disorders, a role for sleep
Medina, E., Peterson, S., Ford, K., Singletary, K. G., & Peixoto, L. (2022) · Neurobiology of Sleep and Circadian Rhythms · doi:10.1016/j.nbscr.2022.100088 · Cited by 15 · see citing works
Dai, Y., Deng, T., Chen, M., Huang, B., Ji, Y., Feng, Y., Liu, S., Zhong, D., Zhang, T., & Zhang, L. (2023) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2023.104616 · Cited by 12 · see citing works
Yingling, M. E. (2019) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2019.06.034 · Cited by 11 · see citing works
The role of machine learning in autism spectrum disorder assessment and management
Reilly, A., Walsh, N., O’Reilly, D. P., Smyth, M., Gorman, K. M., Ostadabbas, S., & Power, C. (2025) · Pediatric Research · doi:10.1038/s41390-025-04566-0 · Cited by 11 · see citing works
Petruccelli, M., Ramella, L., Schaefer, A. J., Sheldrick, R. C., Carter, A. S., Eisenhower, A., Broder‐Fingert, S., & Mackie, T. I. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-04964-3 · Cited by 10 · see citing works
Validation of the Brief Developmental Assessment in pre-school children with heart disease
Brown, K., Ridout, D. A., Pagel, C., Lakhanpaul, M., Kakat, S., Banks, V., Franklin, R. C. G., Witter, T., Lakhani, R., Tibby, S. M., et al. (2018) · Cardiology in the Young · doi:10.1017/s1047951117002773 · Cited by 9 · see citing works
“…dif fi culties has not been speci fi cally studied in children with CHD, early intervention has been recommended across a range of paediatric contexts 17 and is supported by studies of premature infants 18 and autism; 19 early recognition and intervention is also more satisfactory to families.”
BackgroundFood for Thought: Machine Learning in Autism Spectrum Disorder Screening of Infants
Siddiqui, S., Gunaseelan, L., Shaikh, R., Khan, A., Mankad, D., & Hamid, M. A. (2021) · Cureus · doi:10.7759/cureus.18721 · Cited by 9 · see citing works
“concluded that children who were diagnosed late were more likely to be treated with medications or alternative medication, whereas children diagnosed early responded well to conventional ASD therapy such as speech therapy, and monitoring by a pediatric psychiatrist [5].”
BackgroundIskrov, G. G., Vasilev, G., Mitev, M., Nikolova, R., Stoykova, M., & Stefanov, R. S. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-04170-2 · Cited by 8 · see citing works
Qureshi, F. A., & Hahn, J. (2022) · The Canadian Journal of Chemical Engineering · doi:10.1002/cjce.24594 · Cited by 8 · see citing works
Maternal Autistic Traits and Adverse Birth Outcomes
Hosozawa, M., Cable, N., Ikehara, S., Aochi, Y., Tanigawa, K., Baba, S., Hirokawa, K., Kimura, T., Sobue, T., Iso, H., et al. (2024) · JAMA Network Open · doi:10.1001/jamanetworkopen.2023.52809 · Cited by 7 · see citing works
Ou, J., Dong, H., Dai, S. Y., Hou, Y., Wang, Y., Lu, X., Xun, G., Xia, K., Zhao, J., & Shen, Y. (2024) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2024.1291356 · Cited by 6 · see citing works
Autism spectrum disorder based on squeezenet with fractional tasmanian rat swarm optimization
Muppidi, S., Anuradha, G., & Valarmathi, K. (2024) · Multimedia Tools and Applications · doi:10.1007/s11042-024-18800-0 · Cited by 6 · see citing works
“Nowadays, the children affected by autism at two years of age can be determined accurately with the help of cutting-edge equipment [7, 20, 21].”
The use of Language ENvironment Analysis in autism research: A systematic review
Putnam, O. C., Markfeld, J. E., Wright, S. T., Feldman, J. I., Goldblum, J., Karpinsky, M., Neal, A. J., Swanson, M. R., & Harrop, C. (2024) · Autism · doi:10.1177/13623613241290072 · Cited by 7 · see citing works
“…(Hyman et al., 2020; Zwaigenbaum et al., 2016), the average age of diagnosis remains at around four years old or older (Shattuck et al., 2009; Zuckerman et al., 2017), placing the average autistic child at the time of diagnosis outside the recommended age window for analysis using LENA…”
Boylu, M. E., Görmez, A., Turan, Ş., Yeşilkaya, Ü. H., Boylu, F. B., & Duran, A. (2024) · Autism Research · doi:10.1002/aur.3275 · Cited by 6 · see citing works
“These characteristics are broadly consistent with the demo-graphics reported for young adults with ASD in other Western countries (Brett et al., 2016; Kurasawa et al., 2018; Noterdaeme & Hutzelmeyer-Nickels, 2010; Zuckerman et al., 2017).”
Nasrallah, M., Moghrabi, A. E., Kayal, M., Matar, D., Alwan, I., & Fakhouy, M. (2025) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2025.2456800 · Cited by 7 · see citing works
Easler, J. K., Dyches, T. T., Roper, S. O., Yorgason, J. B., & Harper, J. M. (2022) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-60.2.145 · Cited by 6 · see citing works
So, W., Wong, E., Ng, W., Fuego, J., Lay, S., So, M., Lee, Y., Chan, W., Chua, L., Lam, H., et al. (2024) · Autism Research · doi:10.1002/aur.3087 · Cited by 6 · see citing works
“Although an accurate diagnosis can be made as early as age two (Lord et al., 2006), the average age of diagnosis in the United States is 4.4 years (Zuckerman et al., 2017), meaning that the mean diagnostic age is delayed for 2.4 years.”
BackgroundInfluentialMurphy, A., Moskowitz, K., Fernandez, F., & Risser, H. J. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06282-w · Cited by 5 · see citing works
“…2013 ; Pinkerton et al, 2023 Moreover, many children do not receive early intervention services due to receiving diagnoses after the EI age cutoff or due to difficulties accessing timely early intervention services (Knopf, 2016; Nahmias et al., 2019; Shenouda et al., 2022; Zuckerman et al., 2017).”
Smith, J. V., Howard, M., Menezes, M., Burroughs, C., Pappagianopoulos, J. E., Sastri, V., Brunt, S., Miller, C. R., Parenchuk, A., Kuhn, J., et al. (2025) · Autism Research · doi:10.1002/aur.70014 · Cited by 5 · see citing works
The impact of state policy on early autism diagnosis: A qualitative investigation
Lindly, O. J., Abate, D. J., Fuchu, P., Kuhn, J., Bharath, P., Asantewaa, S. M., Feinberg, E., & Broder‐Fingert, S. (2025) · Autism · doi:10.1177/13623613251336813 · Cited by 5 · see citing works
“Long wait times from parent and provider concerns about a child’s development to autism diagnosis are well established as contributing to a late diagnosis, as well as poor access to evidence-based services (Zuckerman et al., 2015, 2017).”
Self-citationMuthiga, M., Mbwayo, A., Kang’ethe, R., & Horn, N. R. (2025) · Child and Adolescent Psychiatry and Mental Health · doi:10.1186/s13034-025-00916-2 · Cited by 4 · see citing works
“However, intensive early intervention has been shown to improve language, cognition, and adaptive functioning for many children diagnosed with ASD, ultimately leading to better economic outcomes for families and communities [8, 9].”
Arabic Language Autism Diagnostic Interview (ALADIN): A Validation Study
Nasir, A. K., Masri, A. T., Shaheen, S., Sayles, H. R., & Nasir, L. (2025) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-025-06797-w · Cited by 4 · see citing works
Current situation and influencing factors of Chinese children’s diagnosis delay in autism
Zhu, F.-L., Ji, Y., Wang, L., Xu, M., & Zou, X. (2025) · Journal of Neurodevelopmental Disorders · doi:10.1186/s11689-025-09636-2 · Cited by 4 · see citing works
“Internationally, studies report a mean DDT of 2–4 years, with AOC occurring as early as 14–24 months but AOD often delayed until school age [16, 25–30].”
Later Age of Autism Diagnosis in Children with Multiple Co-Occurring Psychiatric Disorders
Kavanaugh, B. C., Pierre, D. G. S., Schremp, C., Robbins, A., Best, C. R., Jones, R. N., Sheinkopf, S. J., & Morrow, E. M. (2025) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-025-07113-2 · Cited by 4 · see citing works
Ohl, A., & Schelly, D. (2021) · British Journal of Occupational Therapy · doi:10.1177/03080226211057834 · Cited by 4 · see citing works
“2% of children with ASD receive occupational therapy services (Monz et al., 2019; McDonald et al., 2019; Payackachat et al., 2018; Zuckerman et al., 2017).”
BackgroundInfluentialMehari, A., & Zeleke, S. (2025) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2025.105186 · Cited by 3 · see citing works
Herkert, D., Sullivan, C., Zhu, Y., & Dawson, G. (2023) · Autism · doi:10.1177/13623613231162146 · Cited by 3 · see citing works
“However, a 2-year delay exists from first signs to diagnosis, highlighting the value of targeted primary care interventions (Ozonoff et al., 2008; K. Zuckerman et al., 2017).”
Mire, S. S., McQuillin, S. D., Racine, M., & Goin‐Kochel, R. P. (2019) · Autism Research · doi:10.1002/aur.2107 · Cited by 3 · see citing works
Duesenberg‐Marshall, M. D., & Burns, M. K. (2022) · Psychology in the Schools · doi:10.1002/pits.22649 · Cited by 3 · see citing works
Black and White caregivers’ experiences with the autism diagnostic process
Fisher, A. P., Lynch, J. D., Kandarpa, K., Veer, S. K., Michael, M., Larkin, W., & Hunter, L. L. (2025) · Research in Autism · doi:10.1016/j.reia.2025.202598 · Cited by 2 · see citing works
Racial and Gender Bias in School Psychologists’ Special Education Classification Considerations
Golson, M. E., Bera, J., Kim, J., Williams, S. C., McClain, M. B., Schwartz, S., Harris, B., & Sullivan, A. L. (2024) · Remedial and Special Education · doi:10.1177/07419325241297341 · Cited by 2 · see citing works
“…associated with treatment access and utilization, as children identified later were less likely to receive autism-related interventions, including school-based services, and were more likely to take psychotropic medications than children diagnosed earlier in life (Zuckerman et al., 2017).”
Autism Detection in Children by Features Extraction and Classification Using a Deep Learning Model
Ahmed, D., Hassan, M. A., & Zubair, M. (2024) · Horizons of Information Technology and Engineering (HITE) · doi:10.1109/hite63532.2024.10777276 · Cited by 2 · see citing works
McLennan, J. D., Bahadur, A., Cobigo, V., Hrycko, S., & Fulford, C. (2020) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12821 · Cited by 2 · see citing works
Delay of diagnosis in autism spectrum disorder and its influencing factorsPreprint
Zhu, F.-L., Ji, Y., Wang, L., Zhu, H., Xu, M., Ji, Y., & Zou, X. (2023) · Research Square · doi:10.21203/rs.3.rs-3193389/v1 · Cited by 2 · see citing works
Brisendine, A. E., O’Kelley, S. E., Sen, B., Preskitt, J. K., & Wingate, M. S. (2022) · Acta Psychologica · doi:10.1016/j.actpsy.2022.103800 · Cited by 1 · see citing works
Khan, Y. S., Albobali, Y., Amro, A., Saini, P., Nour, L., Chandra, P., AlMeraisi, M. J., & Alabdulla, M. (2025) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2025.105109 · Cited by 1 · see citing works
The Impact of COVID-19 on Autism Diagnosis and Incidence in the Military Health System
Yeh, K., Shakarji, J., Susi, A., Nylund, C. M., & Flake, E. M. (2025) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-025-07108-z · Cited by 1 · see citing works
Rafiq, S., & Assad, A. (2025) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2025.2590001 · Cited by 1 · see citing works
Alshaban, F. A. W., Frazier, T. W., Ghazal, I., Al‐Faraj, F., Aqel, S., & Thompson, I. R. (2026) · BMC Psychiatry · doi:10.1186/s12888-026-07840-5 · Cited by 1 · see citing works
“Although gold-standard diagnostic assessments can reliably identify ASD in many high-resource settings, these approaches are subjective, time-intensive, require specialized training and are not universally accessible [37, 38].”
Carrasco, V. I. U., Zuckerman, K. E., Charlesworth, C. J., Watson, K., McConnell, K. J., & Lindly, O. J. (2026) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-026-07251-1 · Cited by 1 · see citing works
Self-citationMathur, M., Tang, J., Markham, C. M., McKay, S., Li, R., Ernest, D. K., Marshall, A. N., & Sharma, S. V. (2026) · Clinical Medicine Insights Pediatrics · doi:10.1177/11795565261431178 · Cited by 1 · see citing works
Here/In This Issue and There/Abstract Thinking: Some Identification, Please
Rogers, C. E. (2017) · Journal of the American Academy of Child & Adolescent Psychiatry · doi:10.1016/j.jaac.2017.01.014 · Cited by 1 · see citing works
Luallin, S., Hulac, D., & Pratt, A. A. (2022) · Psychology in the Schools · doi:10.1002/pits.22681 · Cited by 1 · see citing works
Carlon, S., Stephenson, J. R., & Carter, M. (2019) · Autism and child psychopathology series · doi:10.1007/978-3-030-20843-1_29 · Cited by 1 · see citing works
Accelerating autism diagnosis using asynchronous telehealth technology
Reischl, U., Morrier, M. J., Mitchell, G. E., & Oberleitner, R. (2023) · International Journal of Community Medicine and Public Health · doi:10.18203/2394-6040.ijcmph20230613 · Cited by 1 · see citing works
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Special Education Service Utilization in ASD
McDonald, C. A. (2020) · Springer eBooks · doi:10.1007/978-1-4614-6435-8_102408-1
Children with Disabilities Community Assessment – Autism
Blore, L., Boomer, S., Louden, S., Mahoney, L., McQuillan, N., Nash, M., Pang, A., & Roy, S. (2020) · Scope Contemporary Research Topics (Health and Wellbeing) · doi:10.34074/scop.3005028
Research roundup: February 2021
Seal, J., & Odd, D. (2021) · Journal of Health Visiting · doi:10.12968/johv.2021.9.2.50
Gupta, A., Kharb, A., & Sethi, S. (2021) · PARIPEX-INDIAN JOURNAL OF RESEARCH · doi:10.36106/paripex/3409153
Special Education Service Utilization in ASD
McDonald, C. A. (2021) · Springer eBooks · doi:10.1007/978-3-319-91280-6_102408
O contexto diagnóstico de indivíduos com autismo leve
da Rocha, S. S., Martins, A. L. B., Corrêa, V. F., Cardoso, A. C. C., Oliveira, M. C., & Fett‐Conte, A. C. (2023) · Arquivos de Ciências da Saúde · doi:10.17696/2318-3691.30.1.2023.177
Koldas, M., & Şahin, Ş. (2023) · Ege Eğitim Dergisi · doi:10.12984/egeefd.1260286
Bobadilla, T., & Espinoza, J. (2025) · Journal of Ethnic & Cultural Diversity in Social Work · doi:10.1080/15313204.2025.2524348
“Prior studies highlight that Latino families face disparities in accessing ASD services due to language barriers, stigma, and limited culturally tailored interventions (Magaña et al., 2015; Zuckerman et al., 2017).”
InfluentialYarger, H. A., Redcay, E., Herrington, J. D., Kerns, C. M., & Thomas, S. B. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-107684
Culturally and Linguistically Responsive Autism Identification Among Multilingual Youth
Harris, B., & Yang, J. (2025) · Springer eBooks · doi:10.1007/978-3-032-02084-0_14
Mehari, A., & Teketel, S. Z. (2025) · Research Square · doi:10.21203/rs.3.rs-8366042/v1
Uzoaru, F., Preston, M. A., Loux, T. M., & Ross, L. (2026) · Healthcare · doi:10.3390/healthcare14050684
- Authors
- Zuckerman, K., Lindly, O. J., & Chavez, A. E.
- Affiliations
- Oregon State University (US)
- Venue
- Psychiatric Services
- Published
- 2017-01-01
- Volume
- 68
- Issue
- 1
- Pages
- 33-40
- ISSN
- 0022-1597 (ISSN-L)
- 1075-2730
- 1557-9700
- PMC
- PMC5205571
- OpenAlex
- W2495737468
- Cited by
- 109
- References
- 40
- Citations by year
- 2026: 12 · 2025: 17 · 2024: 9 · 2023: 15 · 2022: 14 · 2021: 16 · 2020: 11 · 2019: 9 · 2018: 4 · 2017: 2
- FWCI
- 3.18
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Psychiatric Services (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute of Mental Health (K23MH095828)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, delayed diagnosis, age at diagnosis, behavioral interventions, school-based treatment, complementary and alternative medicine, psychotropic drugs, early diagnosis, elementary school students
- MeSH terms
- Autism Spectrum Disorder, Complementary Therapies, Behavior Therapy, Centers for Disease Control and Prevention, U.S., Child, Child Health Services, Female, Humans, Male, Psychotropic Drugs, School Health Services, United States, Health Care Surveys, Delayed Diagnosis
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