Children with special health care needs and disabilities (CSHCND), particularly those with autism, experience disproportionately high rates of oral health problems, yet the underlying factors remain insufficiently explored. This qualitative study investigated the challenges and effective strategies parents use to support the oral health of autistic children enrolled in Medicaid in one large city. Thirty-one parents were recruited through purposive and snowball sampling from the Oral Health Center for People with Disabilities and the pediatric department and participated in semi-structured interviews conducted via Zoom. Interpretative phenomenological and thematic analyses identified eight key themes: (1) Autism-related Barriers to Oral Hygiene Routines, (2) Challenges in Securing Adequate Dental Care, (3) Denial About Autism and Delay in Early Intervention, (4) Electric Toothbrushes May Help, (5) Sensory Adapted Dental Environments, (6) Use of Social Media and Artificial Intelligence, (7) Support from Allied Health Professionals, and (8) Infrastructure in Education. The findings highlight the complex relationship of individual, social, and systemic factors shaping oral health promotion for this population. Insights from this study can inform the development of tailored interventions, educational initiatives, and policy reforms to improve oral health outcomes for autistic children. As the first study of its kind in New York City, this research amplifies the voices of parents and provides a foundation for future efforts to address persistent oral health disparities in an urban setting.
AlaseA. (2017). The interpretative phenomenological analysis (IPA): A guide to a good qualitative research approach. International Journal of Education and Literacy Studies, 5(2), 9–19.
2.
AlHumaidJ.GaffarB.AlYousefY.AlshuraimF.AlharekyM.El TantawiM. (2020). Oral health of children with autism: The influence of parental attitudes and willingness in providing care. The Scientific World Journal, 2020(1), Article 8329426. https://doi.org/10.1155/2020/8329426
AnwarD. S.Mohd YusofM. Y. P.AhmadM. S.Md SabriB. A. (2022). Family influences on the dental caries status of children with special health care needs: A systematic review. Children, 9(12), Article 12. https://doi.org/10.3390/children9121855
6.
Aragon-GuevaraD.CastleG.SheridanE.VivantiG. (2025). The reach and accuracy of information on autism on TikTok. Journal of Autism and Developmental Disorders, 55(6), 1953–1958. https://doi.org/10.1007/s10803-023-06084-6
7.
BalkaranR.EsnardT.PerryM.VirtanenJ. I. (2022). Challenges experienced in the dental care of persons with special needs: A qualitative study among health professionals and caregivers. BMC Oral Health, 22(1), Article 116. https://doi.org/10.1186/s12903-022-02153-x
8.
BaskaradossJ. K.AlSumaitA.BehbehaniE.QudeimatM. A. (2022). Association between the caregivers’ oral health literacy and the oral health of children and youth with special health care needs. PLOS ONE, 17(1), Article e0263153. https://doi.org/10.1371/journal.pone.0263153
9.
BaumgartenA.HilgertJ. B.RechR. S.Cunha-CruzJ.GoulartB. N. G. (2021). Association between motor proficiency and oral health in people with intellectual disabilities. Journal of Intellectual Disability Research, 65(5), 489–499. https://doi.org/10.1111/jir.12828
ChauhanA.LeadbitterK.Gray-BurrowsK. A.Vinall-CollierK.PicklesN.BakerS. R.MarshmanZ.DayP. F. (2025). An “explosion in the mouth”: The oral health experiences of autistic children. Autism, 29(3), 627–641. https://doi.org/10.1177/13623613241288628
14.
Child and Adolescent Health Measurement Initiative. (2012). Who are children with special health care needs?. www.childhealthdata.org
Committee on Improving Health Outcomes for Children with Disabilities, Board on Health Care Services, Health and Medicine Division, & National Academies of Sciences, Engineering, and Medicine. (2018). Opportunities for improving programs and services for children with disabilities (HoutrowA. J.ValliereF. R.ByersE., Eds.). National Academies Press. https://doi.org/10.17226/25028
17.
ComoD. H.Floríndez-CoxL. I.Stein DukerL. I.CermakS. A. (2022). Oral health barriers for African American caregivers of autistic children. International Journal of Environmental Research and Public Health, 19(24), Article 24. https://doi.org/10.3390/ijerph192417067
18.
DurkinM. S. (2019). Increasing prevalence of developmental disabilities among children in the US: A sign of progress?Pediatrics, 144(4), Article e20192005. https://doi.org/10.1542/peds.2019-2005
19.
ErwinJ.PaisiM.NeillS.BurnsL.VassalloI.NelderA.FacenfieldJ.DevaliaU.VassalloT.WittonR. (2022). Factors influencing oral health behaviours, access and delivery of dental care for autistic children and adolescents: A mixed-methods systematic review. Health Expectations, 25(4), 1269–1318. https://doi.org/10.1111/hex.13544
20.
FloríndezL. I.FloríndezD. C.FloríndezF. M.ComoD. H.PyatakE.Baezconde-GarbanatiL.PolidoJ. C.CermakS. A. (2019). Oral care experiences of Latino parents/caregivers with children with autism and with typically developing children. International Journal of Environmental Research and Public Health, 16(16), Article 16. https://doi.org/10.3390/ijerph16162905
21.
GabarronE.SkafleI.Nordahl-HansenA.WynnR. (2023). Social media interventions for autistic individuals: Systematic review. Frontiers in Psychiatry, 14, Article 1089452. https://doi.org/10.3389/fpsyt.2023.1089452
HesseL. G.SmilyanskiI.BoydL. D.VineyardJ. (2024). Effect of dental hygienists’ self-efficacy on intention to provide dental care to autistic individuals. Special Care in Dentistry, 44(3), 823–836. https://doi.org/10.1111/scd.12921
24.
HooverT.IyerP.ReidL.BentonK.KalladkaM. (2024). Academic dentistry: You might be surprised. Journal of the California Dental Association, 52(1), Article 2320308. https://doi.org/10.1080/19424396.2024.2320308
25.
HoutrowA. J.OkumuraM. J.HiltonJ. F.RehmR. S. (2011). Profiling health and health-related services for children with special health care needs with and without disabilities. Academic Pediatrics, 11(6), 508–516. https://doi.org/10.1016/j.acap.2011.08.004
26.
JonesJ.RobertsE.CockrellD.HigginsD.SharmaD. (2024). Barriers to oral health care for autistic individuals—A scoping review. Healthcare, 12(1), Article 1. https://doi.org/10.3390/healthcare12010103
27.
JunnarkarV. S.TongH. J.HannaK. M. B.AishworiyaR.DuggalM. (2023). Qualitative study on barriers and coping strategies for dental care in autistic children: Parents’ perspective. International Journal of Paediatric Dentistry, 33(2), 203–215. https://doi.org/10.1111/ipd.13035
28.
KashyapK.SinghK.MalikM.JhinganP.MathurS.AroraP. (2024). Evaluation of awareness and perception of pediatric dentists and postgraduates regarding diagnosis and management of patients with autism spectrum disorder. Journal of South Asian Association of Pediatric Dentistry, 7(3), Article 3316. https://doi.org/10.5005/jp-journals-10077-3316
29.
KranzA. M.ZhaoX.MunnichE.LeeJ. Y.WhaleyC. (2025). Medicaid payments and outcomes for pediatric dental surgical procedures by site of care. JAMA Network Open, 8(10), Article e2537081. https://doi.org/10.1001/jamanetworkopen.2025.37081
30.
KrausH.SchulteA. G.FrickeO.SchmidtP. (2025). Tooth brushing behavior and oral health care of people with early childhood autism in Germany. Clinical Oral Investigations, 29(2), Article 112. https://doi.org/10.1007/s00784-025-06194-8
31.
LangC.KerrD.ChiD. L. (2021). Preventive oral health care use for children with special health care needs aged 6 through 12 years enrolled in Medicaid: A mixed methods study. The Journal of the American Dental Association, 152(10), 800–812. https://doi.org/10.1016/j.adaj.2021.04.022
32.
Lebrun-HarrisL. A.CantoM. T.VodickaP.MannM. Y.KinsmanS. B. (2021). Oral health among children and youth with special health care needs. Pediatrics, 148(2), Article e2020025700. https://doi.org/10.1542/peds.2020-02570
33.
MüllerA.BábaÉ. B.ŽidekP.LengyelA.LakóJ. H.Laoues-CzimbalmosN.MolnárA.BodaE. (2024). The experiences of motor skill development in children with autism spectrum disorder (ASD) reflected through parental responses. Children, 11(10), Article 1238. https://doi.org/10.3390/children11101238
34.
NagdaR.LeT.LinB.TanbonliongT. (2024). Oral hygiene practice and home-care challenges in children with autism spectrum disorder in San Francisco: Cross-sectional study. Special Care in Dentistry, 44(3), 837–844. https://doi.org/10.1111/scd.12922
NingrumV.BakarA.ShiehT.-M.ShihY.-H. (2021). The oral health inequities between special needs children and normal children in Asia: A systematic review and meta-analysis. Healthcare, 9(4), Article 4. https://doi.org/10.3390/healthcare9040410
37.
ObeidatR.NoureldinA.BitouniA.AbdellatifH.Lewis-MirandaS.LiuS.BadnerV.TimothéP. (2022). Oral health needs of U.S. children with developmental disorders: A population-based study. BMC Public Health, 22(1), Article 861. https://doi.org/10.1186/s12889-022-13237-2
38.
OkoroC. A.HollisN. D.CyrusA. C.Griffin-BlakeS. (2018). Prevalence of disabilities and health care access by disability status and type among adults—United States, 2016. Morbidity and Mortality Weekly Report, 67(32), 882–887. https://doi.org/10.15585/mmwr.mm6732a3
39.
ParryJ. A.NewtonT.LinehanC.RyanC. (2023). Dental visits for autistic children: A qualitative focus group study of parental perceptions. JDR Clinical & Translational Research, 8(1), 36–47. https://doi.org/10.1177/23800844211049404
40.
PeresM. A.MacphersonL. M. D.WeyantR. J.DalyB.VenturelliR.MathurM. R.ListlS.CelesteR. K.Guarnizo-HerreñoC. C.KearnsC.BenzianH.AllisonP.WattR. G. (2019). Oral diseases: A global public health challenge. The Lancet, 394(10194), 249–260. https://doi.org/10.1016/S0140-6736(19)31146-8
41.
RatcliffD. (2003). Video methods in qualitative research. In Qualitative research in psychology: Expanding perspectives in methodology and design (pp. 113–129). American Psychological Association. https://doi.org/10.1037/10595-007
42.
RonisS. D.SelvarajD.AlbertJ. M.KoroukianS. M.NelsonS. (2023). Dental caries in Medicaid-insured preschool children with or without special health care needs in Northeast Ohio. JAMA Network Open, 6(2), Article e230999. https://doi.org/10.1001/jamanetworkopen.2023.0999
43.
SamiW.AhmadM. S.ShaikR. A.MirajM.AhmadS.MollaM. H. (2024). Oral health statuses of children and young adults with autism spectrum disorder: An umbrella review. Journal of Clinical Medicine, 13(1), Article 1. https://doi.org/10.3390/jcm13010059
44.
SauerA. K.StantonJ. E.HansS.GrabruckerA. M. (2021). Autism spectrum disorders: Etiology and pathology. In GrabruckerA. M. (Ed.), Autism spectrum disorders. Exon. http://www.ncbi.nlm.nih.gov/books/NBK573613/
45.
Stein DukerL. I.ComoD. H.JoletteC.VigenC.GongC. L.WilliamsM. E.PolidoJ. C.Floríndez-CoxL. I.CermakS. A. (2023). Sensory adaptations to improve physiological and behavioral distress during dental visits in autistic children: A randomized crossover trial. JAMA Network Open, 6(6), Article e2316346. https://doi.org/10.1001/jamanetworkopen.2023.16346
46.
StenssonM.NorderydJ.Van RiperM.MarksL.BjörkM. (2022). Dental health care for children with Down syndrome: Parents’ description of their children’s needs in dental health care settings. European Journal of Oral Sciences, 130(3), Article e12859. https://doi.org/10.1111/eos.12859
47.
SukantoS.LazuardiP. R.ErmawatiT.ProbosariN.SetyoriniD.BudirahardjoR.PrihatiningrumB.ShitaA. D. P. (2023). The effectiveness of using an electric toothbrush as a plaque control tool in school-autistic children. International Journal of Medical Science and Clinical Research Studies, 3(10), 2485–2488. https://doi.org/10.47191/ijmscrs/v3-i10-68
