Abstract
The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.
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Notes
This paper uses the term “profound autism” using the definition put forth by the Lancet Commission (Lord et al., 2022). We use this descriptor to recognize unique service needs, while simultaneously exploring heterogeneity related to service needs within this subset of the autism spectrum (Kapp, 2023; Singer et al., 2023). This paper uses identity-first language (“autistic”) or “autistic with co-occurring ID” when not referring to profound autism specifically.
References
Anderson, C., & Butt, C. (2018). Young adults on the Autism Spectrum: The struggle for Appropriate services. Journal of Autism and Developmental Disorders, 48(11), 3912–3925. https://doi.org/10.1007/s10803-018-3673-z.
Anderson, K. A., Hemmeter, J., Wittenburg, D., Baller, J., Roux, A. M., Rast, J. E., & Shattuck, P. T. (2022). National and state trends in autistic adult supplemental security income awardees: 2005–2019. Journal of Autism and Developmental Disorders, 52(8), 3547–3559.
Averill, J. B. (2002). Matrix analysis as a complementary analytic strategy in qualitative inquiry. Qualitative Health Research, 12(6), 855–866. https://doi.org/10.1177/104973230201200611.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Rosenberg, R., White, C., Durkin, T., Imm, M. S., Nikolaou, P., Yeargin-Allsopp, L., Lee, M., Harrington, L. C., Lopez, R., Fitzgerald, M., Hewitt, R. T., & Dowling, A., N. F (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1.
Broder-Fingert, S., Mateo, C., & Zuckerman, K. E. (2020). Structural racism and autism. Pediatrics, 146(3), e2020015420. https://doi.org/10.1542/peds.2020-015420.
Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent Perspectives on Community Mental Health Services for Children with Autism Spectrum disorders. Journal of Child and Family Studies, 21(4), 533–544. https://doi.org/10.1007/s10826-011-9506-8.
Burke, M. M., & Heller, T. (2017). Disparities in Unmet Service needs among adults with intellectual and other Developmental Disabilities. Journal of Applied Research in Intellectual Disabilities: JARID, 30(5), 898–910. https://doi.org/10.1111/jar.12282.
Cai, R. Y., Richdale, A. L., Uljarević, M., Dissanayake, C., & Samson, A. C. (2018). Emotion regulation in autism spectrum disorder: Where we are and where we need to go. Autism Research, 11(7), 962–978. https://doi.org/10.1002/aur.1968.
Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in Transition Planning for Youth with Autism Spectrum Disorder. Pediatrics, 131(3), 447–454. https://doi.org/10.1542/peds.2012-1572.
Cheak-Zamora, N. C., Teti, M., & First, J. (2015). Transitions are scary for our kids, and they’re scary for us’: Family Member and Youth perspectives on the challenges of transitioning to Adulthood with Autism. Journal of Applied Research in Intellectual Disabilities, 28(6), 548–560. https://doi.org/10.1111/jar.12150.
Cheak-Zamora, N., Farmer, J. G., Crossman, M. K., Malow, B. A., Mazurek, M. O., Kuhlthau, K., Stobbe, G., Loftin, R., Mirza-Agrawal, M., Tapia, M., Hess, A., Davis, K., & Sohl, K. (2021). Provider perspectives on the extension for Community Healthcare outcomes Autism: Transition to Adulthood Program. Journal of Developmental & Behavioral Pediatrics, 42(2), 91–100. https://doi.org/10.1097/DBP.0000000000000872.
Clarke, E. B., McCauley, J. B., Lutz, A., Gotelli, M., Sheinkopf, S. J., & Lord, C. (2024). Understanding profound autism: Implications for stigma and supports. Frontiers in Psychiatry, 15. https://doi.org/10.3389/fpsyt.2024.1287096.
Collins, H. M., & Evans, R. (2002). The Third Wave of Science studies: Studies of expertise and experience. Social Studies of Science, 32(2), 235–296. https://doi.org/10.1177/0306312702032002003.
Cooke, E., Smith, V., & Brenner, M. (2020). Parents’ experiences of accessing respite care for children with Autism Spectrum disorder (ASD) at the acute and primary care interface: A systematic review. BMC Pediatrics, 20(1), 244. https://doi.org/10.1186/s12887-020-02045-5.
Dingfelder, H. E., & Mandell, D. S. (2011). Bridging the Research-to-practice gap in Autism intervention: An application of Diffusion of Innovation Theory. Journal of Autism and Developmental Disorders, 41(5), 597–609. https://doi.org/10.1007/s10803-010-1081-0.
Drahota, A., Sadler, R., Hippensteel, C., Ingersoll, B., & Bishop, L. (2020). Service deserts and service oases: Utilizing geographic information systems to evaluate service availability for individuals with autism spectrum disorder. Autism, 24(8), 2008–2020. https://doi.org/10.1177/1362361320931265.
Dyson, M. W., Chlebowski, C., & Brookman-Frazee, L. (2019). Therapists’ adaptations to an intervention to reduce challenging behaviors in children with Autism Spectrum Disorder in Publicly Funded Mental Health Services. Journal of Autism and Developmental Disorders, 49(3), 924–934. https://doi.org/10.1007/s10803-018-3795-3.
Elster, N., & Parsi, K. (2020). Transitioning from adolescence to Adulthood with Autism Spectrum Disorder: An overview of planning and legal issues. Psychiatric Clinics, 43(4), 723–733. https://doi.org/10.1016/j.psc.2020.08.008.
Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943–953. https://doi.org/10.1177/1362361318786721.
Frazier, T. W., Dawson, G., Murray, D., Shih, A., Sachs, J. S., & Geiger, A. (2018). Brief report: A Survey of Autism Research priorities across a Diverse Community of stakeholders. Journal of Autism and Developmental Disorders, 48(11), 3965–3971. https://doi.org/10.1007/s10803-018-3642-6.
Gale, R. C., Wu, J., Erhardt, T., Bounthavong, M., Reardon, C. M., Damschroder, L. J., & Midboe, A. M. (2019). Comparison of rapid vs in-depth qualitative analytic methods from a process evaluation of academic detailing in the Veterans Health Administration. Implementation Science, 14(1), 11. https://doi.org/10.1186/s13012-019-0853-y.
Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from interactive Autism Network data. Autism, 19(7), 794–804. https://doi.org/10.1177/1362361315583818.
Hamilton, A. B. (2013). Qualitative Methods in Rapid Turn-Around Health Services Research. 42.
Hamilton, A. B., & Finley, E. P. (2019). Qualitative methods in implementation research: An introduction. Psychiatry Research, 280, 112516. https://doi.org/10.1016/j.psychres.2019.112516.
Harkness, A., Weinstein, E. R., Atuluru, P., Hernandez Altamirano, D., Vidal, R., Rodriguez-Diaz, C. E., & Safren, S. A. (2022). Latino sexual minority men’s intersectional minority stress, general stress, and coping during COVID-19: A rapid qualitative study. Journal of Gay & Lesbian Mental Health, 26(2), 130–157. https://doi.org/10.1080/19359705.2021.1995096.
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010.
Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O’Neal, L., McLeod, L., Delacqua, G., Delacqua, F., Kirby, J., & Duda, S. N. (2019). The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics, 95, 103208. https://doi.org/10.1016/j.jbi.2019.103208.
Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are Enough? Qualitative Health Research, 27(4), 591–608. https://doi.org/10.1177/1049732316665344.
Hilbe, J. M. (2016). Practical guide to logistic regression. CRC.
Holtrop, J. S., Rabin, B. A., & Glasgow, R. E. (2018). Qualitative approaches to use of the RE-AIM framework: Rationale and methods. BMC Health Services Research, 18(1), 177. https://doi.org/10.1186/s12913-018-2938-8.
Hughes, M. M., Shaw, K. A., DiRienzo, M., Durkin, M. S., Esler, A., Hall-Lande, J., Wiggins, L., Zahorodny, W., Singer, A., & Maenner, M. J. (2023). The prevalence and characteristics of children with Profound Autism, 15 sites, United States, 2000–2016. Public Health Reports, 138(6), 971–980. https://doi.org/10.1177/00333549231163551.
Hughes, J., Roberts, R., Tarver, J., Warters-Louth, C., Zhang, B., Southward, E., Shaw, R., Edwards, G., Waite, J., & Pearson, E. (2023a). It wasn’t the strategies on their own’: Exploring caregivers’ experiences of accessing services in the development of interventions for autistic people with intellectual disability. Autism, 13623613231196084. https://doi.org/10.1177/13623613231196084.
Kallio, H., Pietilä, A. M., Johnson, M., & Kangasniemi, M. (2016). Systematic methodological review: Developing a framework for a qualitative semi-structured interview guide. Journal of Advanced Nursing, 72(12), 2954–2965. https://doi.org/10.1111/jan.13031.
Kapp, S. K. (2023). Profound concerns about Profound Autism: Dangers of Severity scales and Functioning labels for Support needs. Education Sciences, 13(2). https://doi.org/10.3390/educsci13020106.
Kasari, C., Brady, N., Lord, C., & Tager-Flusberg, H. (2013). Assessing the minimally verbal school-aged child with Autism Spectrum Disorder. Autism Research: Official Journal of the International Society for Autism Research, 6(6), 479–493. https://doi.org/10.1002/aur.1334.
Kerr, C., Nixon, A., & Wild, D. (2010). Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Review of Pharmacoeconomics & Outcomes Research, 10(3), 269–281. https://doi.org/10.1586/erp.10.30.
Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss in Services precedes High School exit for teens with ASD: A longitudinal study. Autism Research: Official Journal of the International Society for Autism Research, 12(6), 911–921. https://doi.org/10.1002/aur.2113.
Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J., Dissanayake, C., Divan, G., Freitag, C. M., Gotelli, M. M., Kasari, C., Knapp, M., Mundy, P., Plank, A., Scahill, L., Servili, C., Shattuck, P., & McCauley, J. B. (2022). The Lancet Commission on the future of care and clinical research in autism. The Lancet, 399(10321), 271–334. https://doi.org/10.1016/S0140-6736(21)01541-5.
Maddox, B. B., Kang-Yi, C. D., Brodkin, E. S., & Mandell, D. S. (2018). Treatment utilization by adults with autism and co-occurring anxiety or depression. Research in Autism Spectrum Disorders, 51, 32–37. https://doi.org/10.1016/j.rasd.2018.03.009.
Maddox, B. B., Crabbe, S., Beidas, R. S., Brookman-Frazee, L., Cannuscio, C. C., Miller, J. S., Nicolaidis, C., & Mandell, D. S. (2020). I wouldn’t know where to start: Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults. Autism, 24(4), 919–930. https://doi.org/10.1177/1362361319882227.
Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17. https://doi.org/10.1016/j.dhjo.2012.08.005.
Mansfield, E. R., & Helms, B. P. (1982). Detecting Multicollinearity. The American Statistician, 36(3), 158–160. https://doi.org/10.1080/00031305.1982.10482818.
Mason, D., Capp, S. J., Stewart, G. R., Kempton, M. J., Glaser, K., Howlin, P., & Happé, F. (2021). A Meta-analysis of Outcome studies of autistic adults: Quantifying effect size, Quality, and Meta-regression. Journal of Autism and Developmental Disorders, 51(9), 3165–3179. https://doi.org/10.1007/s10803-020-04763-2.
Mazefsky, C. A., Herrington, J., Siegel, M., Scarpa, A., Maddox, B. B., Scahill, L., & White, S. W. (2013). The role of emotion regulation in Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(7), 679–688. https://doi.org/10.1016/j.jaac.2013.05.006.
Mazefsky, C. A., Day, T. N., Siegel, M., White, S. W., Yu, L., Pilkonis, P. A., & For The Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC). (2018a). Development of the emotion dysregulation inventory: A PROMIS®ing Method for creating sensitive and unbiased questionnaires for Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 48(11), 3736–3746. https://doi.org/10.1007/s10803-016-2907-1.
Mazefsky, C. A., Yu, L., White, S. W., Siegel, M., & Pilkonis, P. A. (2018b). The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample. Autism Research: Official Journal of the International Society for Autism Research, 11(6), 928–941. https://doi.org/10.1002/aur.1947.
Nevedal, A. L., Reardon, C. M., Widerquist, O., Jackson, M. A., Cutrona, G. L., White, S. L., B. S., & Damschroder, L. J. (2021). Rapid versus traditional qualitative analysis using the Consolidated Framework for Implementation Research (CFIR). Implementation Science, 16(1), 67. https://doi.org/10.1186/s13012-021-01111-5.
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, C., Robertson, S., & Baggs, A. (2011). Collaboration strategies in Nontraditional Community-based participatory research partnerships: Lessons from an academic–community Partnership with autistic self-advocates. Progress in Community Health Partnerships, 5(2), 143–150. https://doi.org/10.1353/cpr.2011.0022.
Northrup, J. B., Goodwin, M., Montrenes, J., Vezzoli, J., Golt, J., Peura, C. B., Siegel, M., & Mazefsky, C. (2020). Observed emotional reactivity in response to frustration tasks in psychiatrically hospitalized youth with autism spectrum disorder. Autism, 24(4), 968–982. https://doi.org/10.1177/1362361320908108.
Nuske, H. J., Pellecchia, M., Kane, C., Seidman, M., Maddox, B. B., Freeman, L. M., Rump, K., Reisinger, E. M., Xie, M., & Mandell, D. S. (2020). Self-regulation is bi-directionally associated with cognitive development in children with autism. Journal of Applied Developmental Psychology, 68, 101139. https://doi.org/10.1016/j.appdev.2020.101139.
Palinkas, L. A., Aarons, G. A., Horwitz, S., Chamberlain, P., Hurlburt, M., & Landsverk, J. (2011). Mixed method designs in implementation research. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 44–53. https://doi.org/10.1007/s10488-010-0314-z.
Palinkas, L. A., Horwitz, S. M., Green, C. A., Wisdom, J. P., Duan, N., & Hoagwood, K. (2015). Analysis in Mixed Method Implementation Research. Administration and Policy in Mental Health and Mental Health Services Research, 42(5), 533–544. https://doi.org/10.1007/s10488-013-0528-y. Purposeful Sampling for Qualitative Data Collection.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627.
Pickard, K. E., & Ingersoll, B. R. (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism, 20(1), 106–115. https://doi.org/10.1177/1362361315569745.
Powell, B. J., Beidas, R. S., Lewis, C. C., Aarons, G. A., McMillen, J. C., Proctor, E. K., & Mandell, D. S. (2017). Methods to improve the selection and tailoring of implementation strategies. The Journal of Behavioral Health Services & Research, 44(2), 177–194. https://doi.org/10.1007/s11414-015-9475-6.
Reichow, B., & Barton, E. E. (2014). Evidence-Based Psychosocial Interventions for Individuals With Autism Spectrum Disorders. In Handbook of Autism and Pervasive Developmental Disorders, Fourth Edition. American Cancer Society. https://doi.org/10.1002/9781118911389.hautc42.
Roche, L., Adams, D., & Clark, M. (2021). Research priorities of the autism community: A systematic review of key stakeholder perspectives. Autism, 25(2), 336–348. https://doi.org/10.1177/1362361320967790.
Roux, A. M., Rast, J. E., & Shattuck, P. T. (2020). State-level variation in Vocational Rehabilitation Service Use and related outcomes among transition-age youth on the Autism Spectrum. Journal of Autism and Developmental Disorders, 50(7), 2449–2461. https://doi.org/10.1007/s10803-018-3793-5.
Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research: A cross-sectional review and meta-analysis. Molecular Autism, 10(1), 9. https://doi.org/10.1186/s13229-019-0260-x.
Scheeren, A. M., Buil, J. M., Howlin, P., Bartels, M., & Begeer, S. (2021). Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study. Autism, 13623613211027673. https://doi.org/10.1177/13623613211027673.
Schott, W., Nonnemacher, S., & Shea, L. (2021). Service Use and Unmet needs among adults with autism awaiting home- and community-based Medicaid services. Journal of Autism and Developmental Disorders, 51(4), 1188–1200. https://doi.org/10.1007/s10803-020-04593-2.
Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post–High School Service Use among Young adults with an Autism Spectrum Disorder. Archives of Pediatrics & Adolescent Medicine, 165(2), 141–146. https://doi.org/10.1001/archpediatrics.2010.279.
Shattuck, P. T., Lau, L., Anderson, K. A., & Kuo, A. A. (2018). A National Research Agenda for the transition of Youth with Autism. Pediatrics, 141(Supplement 4), S355–S361. https://doi.org/10.1542/peds.2016-4300M.
Shattuck, P. T., Garfield, T., Roux, A. M., Rast, J. E., Anderson, K., Hassrick, E. M., & Kuo, A. (2020). Services for adults with Autism Spectrum Disorder: A systems Perspective. Current Psychiatry Reports, 22(3), 13. https://doi.org/10.1007/s11920-020-1136-7.
Shenouda, J., Barrett, E., Davidow, A. L., Sidwell, K., Lescott, C., Halperin, W., Silenzio, V. M. B., & Zahorodny, W. (2023). Prevalence and disparities in the detection of Autism without Intellectual disability. Pediatrics, 151(2), e2022056594. https://doi.org/10.1542/peds.2022-056594.
Siegel, M. (2018). The severe end of the Spectrum: Insights and opportunities from the Autism Inpatient Collection (AIC). Journal of Autism and Developmental Disorders, 48(11), 3641–3646. https://doi.org/10.1007/s10803-018-3731-6.
Singer, A., Lutz, A., Escher, J., & Halladay, A. (2023). A full semantic toolbox is essential for autism research and practice to thrive. Autism Research, 16(3), 497–501. https://doi.org/10.1002/aur.2876.
Smith, K. A., Gehricke, J. G., Iadarola, S., Wolfe, A., & Kuhlthau, K. A. (2020). Disparities in Service Use among Children with Autism: A systematic review. Pediatrics, 145(Supplement_1), S35–S46. https://doi.org/10.1542/peds.2019-1895G.
Sosnowy, C., Silverman, C., & Shattuck, P. (2018). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29–39. https://doi.org/10.1177/1362361317699585.
Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2016). Vineland-3: Vineland Adaptive Behavior Scale. Parent/caregiver form domain-level version - ages 3 to 90 +. PsychCorp.
Spradley, J. P. (2016). The Ethnographic interview. Waveland.
Stadnick, N. A., Drahota, A., & Brookman-Frazee, L. (2013). Parent perspectives of an evidence-based intervention for children with Autism served in Community Mental Health clinics. Journal of Child and Family Studies, 22(3), 414–422. https://doi.org/10.1007/s10826-012-9594-0.
Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. (2019). Are children severely affected by Autism Spectrum Disorder Underrepresented in Treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49(4), 1378–1390. https://doi.org/10.1007/s10803-018-3844-y.
Taylor, B., Henshall, C., Kenyon, S., Litchfield, I., & Greenfield, S. (2018). Can rapid approaches to qualitative analysis deliver timely, valid findings to clinical leaders? A mixed methods study comparing rapid and thematic analysis. British Medical Journal Open, 8(10), e019993. https://doi.org/10.1136/bmjopen-2017-019993.
Thurm, A., Farmer, C., Salzman, E., Lord, C., & Bishop, S. (2019). State of the field: Differentiating intellectual disability from Autism Spectrum Disorder. Frontiers in Psychiatry, 10. https://doi.org/10.3389/fpsyt.2019.00526.
Thurm, A., Halladay, A., Mandell, D., Maye, M., Ethridge, S., & Farmer, C. (2022). Making research possible: Barriers and solutions for those with ASD and ID. Journal of Autism and Developmental Disorders, 52(10), 4646–4650. https://doi.org/10.1007/s10803-021-05320-1.
Tschida, J. E., Maddox, B. B., Bertollo, J. R., Kuschner, E. S., Miller, J. S., Ollendick, T. H., Greene, R. W., & Yerys, B. E. (2021). Caregiver perspectives on interventions for behavior challenges in autistic children. Research in Autism Spectrum Disorders, 81, 101714. https://doi.org/10.1016/j.rasd.2020.101714.
Turcotte, P., Mathew, M., Shea, L. L., Brusilovskiy, E., & Nonnemacher, S. L. (2016). Service needs across the Lifespan for individuals with autism. Journal of Autism and Developmental Disorders, 46(7), 2480–2489. https://doi.org/10.1007/s10803-016-2787-4.
Uljarević, M., Phillips, J. M., Schuck, R. K., Schapp, S., Solomon, E. M., Salzman, E., Allerhand, L., Libove, R. A., Frazier, T. W., & Hardan, A. Y. (2020). Exploring Social subtypes in Autism Spectrum disorder: A preliminary study. Autism Research, 13(8), 1335–1342. https://doi.org/10.1002/aur.2294.
Uljarević, M., Spackman, E. K., Cai, R. Y., Paszek, K. J., Hardan, A. Y., & Frazier, T. W. (2023). Daily living skills scale: Development and preliminary validation of a new, open-source assessment of daily living skills. Frontiers in Psychiatry, 13. https://www.frontiersin.org/articles/https://doi.org/10.3389/fpsyt.2022.1108471.
Wachtel, L. E., Escher, J., Hallyday, A., Lutz, A., Satriale, G., Westover, A., & Lopez-Arvizu, C. (2024). Profound autism: An imperative diagnosis. Pediatric Clinics, 0(0). https://doi.org/10.1016/j.pcl.2023.12.005.
Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9(1), 11–29. https://doi.org/10.1007/BF01531288.
Wood, J. J., McLeod, B. D., Klebanoff, S., & Brookman-Frazee, L. (2015). Toward the implementation of evidence-based interventions for Youth with Autism Spectrum disorders in Schools and Community agencies. Behavior Therapy, 46(1), 83–95. https://doi.org/10.1016/j.beth.2014.07.003.
Acknowledgements
The authors would like to thank the caregivers of adolescents and adults with profound autism who dedicated their time to this research. Authors are also grateful to Karina Ho and Dylan Anderson for their significant contributions to summarizing interview transcripts for qualitative data analysis. Finally, the authors are grateful to Alycia Halladay at the Autism Science Foundation and Jill Escher at the National Council on Severe Autism for supporting recruitment efforts. This work was inspired by the families who are tirelessly advocating for their loved ones with profound autism.
Funding
The study was supported by a Fahs-Beck Fund Dissertation Award to EF.
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EF designed the current study in consultation with MB, JG, and TV. EF analyzed quantitative data, conducted qualitative interviews and oversaw coding and data analyses. Qualitative and quantitative data were interpreted by EF and discussed in collaboration with all authors. The manuscript was drafted by EF. All authors critically reviewed and revised the manuscript, and approved the final version.
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Ferguson, E.F., Barnett, M.L., Goodwin, J.W. et al. “There is No Help:” Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06451-x
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DOI: https://doi.org/10.1007/s10803-024-06451-x