Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

25-08-2018 | Original Paper

Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation

Auteurs: Katerina M. Dudley, Mark R. Klinger, Allison Meyer, Patrick Powell, Laura G. Klinger

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 2/2019

Abstract

With the increasing prevalence of adults with autism spectrum disorder (ASD), research examining the service experiences of this population is greatly needed. The current study investigated service use, unmet needs, and obstacles to service access for a large sample of adults with ASD. After accounting for various demographic factors known to impact service usage and needs, living situation was a significant predictor of service use, needs, and obstacles to services. Adults with ASD living with family reported less service use, higher unmet need, and more obstacles to accessing services. With more than half of this adult sample living with family, results have clear public policy implications to support the increasing population of adults with ASD living with aging caregivers.

vorige artikel Characteristics of Young Adults with Autism Spectrum Disorder Performing Different Daytime Activities

volgende artikel A Randomised Controlled Trial of an Information Communication Technology Delivered Intervention for Children with Autism Spectrum Disorder Living in Regional Australia

Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18(5), 562–570. https://doi.org/10.1177/1362361313481860.Prevalence.CrossRefPubMed

Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017). Rural trends in diagnosis and services for autism spectrum disorder. Frontiers in Psychology, 8, 2013–2017. https://doi.org/10.3389/fpsyg.2017.00590.CrossRef

Arnett, J. J., & Tanner, J. L. (2006). Emerging adulthood: The dawning of a new age. Washington, DC: American Psychological Association.CrossRef

Astone, M. N., & McLanahan, S. S. (1994). Family structure, residential mobility, and school dropout: A research note. Demography, 31(4), 575–584. https://doi.org/10.2307/2061791.CrossRefPubMed

Baio, J., Wiggins, L., Christensen, D. L., & Al., E. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental. MMWR Surveillance Summaries, 67, 1.CrossRefPubMedCentral

Ballaban-Gil, K., Rapin, I., Tuchman, R., & Shinnar, S. (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric Neurology, 15(3), 217–223. https://doi.org/10.1016/S0887-8994(96)00219-6.CrossRefPubMed

Benevides, T. W., Carretta, H. J., & Mandell, D. S. (2016). Differences in perceived need for medical, therapeutic, and family support services among children with ASD. Pediatrics, 137(S2), S176–S185. https://doi.org/10.1542/peds.2015-2851P.CrossRefPubMed

Bishop-Fitzpatrick, L. (2016). Psychosocial interventions and community-based services for adults with autism in the United States: Understanding what we know now and charting a course for the future. In Autism spectrum disorder in mid and later life (pp. 323–332). London: Jessica Kingsley Publishers.

Bishop-Fitzpatrick, L., Minshew, N., & Eack, S. (2013). A systematic review of psychosocial interventions for adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(3), 687–694.CrossRefPubMedPubMedCentral

Broder-Fingert, S., Shui, A., Pulcini, C. D., Kurowski, D., & Perrin, J. M. (2013). Racial and ethnic differences in subspecialty service use by bhildren with autism. Pediatrics, 132(1), 94–100. https://doi.org/10.1542/peds.2012-3886.CrossRefPubMed

Brody, E. M. (1978). The aging of the family. American Academy of Political and Social Science, 438, 13–27.CrossRef

Brody, E. M. (1985). Parent care as a normative family stress. The Gerontological Society of America, 25(1), 19–29.

Cidav, Z., Lawer, L., Marcus, S. C., & Mandell, D. S. (2013). Age-related variation in health service use and associated expenditures among children with autism. Journal of Autism and Developmental Disorders, 43(4), 924–931. https://doi.org/10.1007/s10803-012-1637-2.CrossRefPubMedPubMedCentral

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2014). Home- and community-based waivers for children with autism: Effects on service use and costs. Intellectual and Developmental Disabilities, 52(4), 239–248. https://doi.org/10.1352/1934-9556-52.4.239.CrossRefPubMedPubMedCentral

Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747. https://doi.org/10.1007/s10803-007-0441-x.CrossRefPubMed

Esbensen, A. J., Rojahn, J., Aman, M. G., & Ruedrich, S. (2003). Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. Journal of Autism and Developmental Disorders, 33(6), 617–629. https://doi.org/10.1023/B:JADD.0000005999.27178.55.CrossRefPubMed

García-Villamisar, D., & Hughes, C. (2007). Supported employment improves cognitive performance in adults with Autism. Journal of Intellectual Disability Research: JIDR, 51(Pt 2), 142–150. https://doi.org/10.1111/j.1365-2788.2006.00854.x.CrossRefPubMed

García-Villamisar, D., Wehman, P., & Diaz Navarro, M. (2002). Changes in the quality of autistic people’s life that work in supported and sheltered employment. A 5-year follow-up study. Journal of Vocational Rehabilitation, 17(4), 309–312.

Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45. https://doi.org/10.1007/s10879-010-9160-2.CrossRef

Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism, 9(5), 533–549. https://doi.org/10.1177/1362361305057871.CrossRefPubMed

Krauss, M., Seltzer, M., & Jacobson, H. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(2), 111–124. https://doi.org/10.1111/j.1365-2788.2004.00599.x.CrossRefPubMed

Leslie, D. L., Iskandarani, K., & Dick, A. W. (2017). The effects of medicaid home and community-based services waivers on unmet needs among children with autism spectrum disorder. Medical Care, 55(1), 57–63.CrossRefPubMedPubMedCentral

Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5(4), 1271–1282. https://doi.org/10.1016/j.rasd.2011.01.023.CrossRef

Liptak, G., Benzoni, L., Mruzek, D. W., Nolan, K., Thingvoll, M., Wade, C., & Fryer, E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the national survey of children’s health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152–160. https://doi.org/10.1097/DBP.0b013e318165c7a0.CrossRefPubMed

Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J., & Mailick, M. (2013). An evaluation of an activities of daily living scale for adolscents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17.CrossRefPubMed

Mandell, D. S., Wiggins, L. D., Carpenter, L., Daniels, J., DiGuiseppi, C., Durkin, M. S., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorder. American Journal of Public Health, 99(3), 493–498.CrossRefPubMedPubMedCentral

Nathenson, R., & Zablotsky, B. (2017). The transition to the adult health care system among youths with autism spectrum disorder. Psychiatric Services, 8, 1–4. https://doi.org/10.1176/appi.ps.201600239.CrossRef

Nguyen, C. T., Krakowiak, P., Hansen, R., Hertz-Picciotto, I., & Angkustsiri, K. (2016). Sociodemographic disparities in intervention service utilization in families of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(12), 3729–3738. https://doi.org/10.1007/s10803-016-2913-3.CrossRefPubMedPubMedCentral

Nightingale, S. (2012). Autism Spectrum Disorders. Nature Reviews Drug Discovery, 11, 745.CrossRefPubMed

Persson, B. (2000). Brief report: A longitudinal study of quality of life and independence among adult men with autism. Journal of Autism and Developmental Disorders, 30(1), 61–66.CrossRefPubMed

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 usage. Autism, 20(1), 106–115.CrossRefPubMed

Porterfield, S. L., & McBride, T. D. (2007). The effect of poverty and caregiver education on perceived need and access to health services among children with special health care needs. American Journal of Public Health, 97(2), 323–329. https://doi.org/10.2105/AJPH.2004.055921.CrossRefPubMedPubMedCentral

Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., et al. (2017). Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism, 21(5), 622–634.CrossRefPubMed

Rumberger, R. W., Larson, K. A., Ream, R. K., & Palardy, G. J. (1999). The educational consequences of mobility for California students and schools. Policy Analysis for California Education (PACE).

Schlossberg, N. K. (1981). A model for analyzing human adaptation to development. The Counseling Psychologist, 9(2), 2–18.CrossRef

Schopler, E., Reichler, R. J., & Renner, B. R., (1988). Childhood autism rating scale (CARS). Los Angeles: Western Psychological Services.

Shattuck, P. T., Roux, A. M., Hudson, L. E., Lounds Taylor, J., Maenner, M. J., & Trani, J.-F. (2012). Services for adults with an autism spectrum disorder. Canadian Journal of Psychiatry, 57(5), 284–291.CrossRefPubMed

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.CrossRef

Skalli, A., Theodossiou, I., & Vasileiou, E. (2008). Facets of job satisfaction and overall job satisfaction. Journal of Chemical Information and Modeling, 53(9), 1689–1699. https://doi.org/10.1017/CBO9781107415324.004.CrossRef

Taylor, J. L., McPheeters, M. L., Sathe, N. A., Dove, D., Veenstra-VanderWeele, J., & Warren, Z. (2012). A systematic review of vocational interventions for young adults with autism with autism spectrum disorders. Pediatrics. https://doi.org/10.1542/peds.2012-0682.CrossRefPubMedPubMedCentral

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, 2480–2489. https://doi.org/10.1007/s10803-016-2787-4.CrossRefPubMed

U.S. Census Bureau. (1983). General population characteristics: United States summary. Washington, DC: U.S. Census Bureau.

Titel: Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation
Auteurs: Katerina M. Dudley
Mark R. Klinger
Allison Meyer
Patrick Powell
Laura G. Klinger
Publicatiedatum: 25-08-2018
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 2/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-018-3729-0

Andere artikelen Uitgave 2/2019

Oral Health Behaviours of Preschool Children with Autism Spectrum Disorders and Their Barriers to Dental Care

Original Paper

Decreasing Food Stealing of Child with Prader-Willi Syndrome Through Function-Based Differential Reinforcement

Original Paper

Brief Report: Pediatrician Perspectives Regarding Genetic Evaluations of Children with Autism Spectrum Disorder

Brief Report

Sensitivity and Specificity of the ADOS-2 Algorithm in a Large German Sample

Open Access
Original Paper

Toddlers with Autism Spectrum Disorder Can Use Language to Update Their Expectations About the World

Original Paper

Daily Sources of Autonomy-Supportive and Controlling Parenting in Mothers of Children with ASD: The Role of Child Behavior and Mothers’ Psychological Needs

Original Paper

Bohn Stafleu van Loghum

Welkom bij THIM Hogeschool voor Fysiotherapie & Bohn Stafleu van Loghum

Registreer

Login

Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation

Abstract

Andere artikelen Uitgave 2/2019

Oral Health Behaviours of Preschool Children with Autism Spectrum Disorders and Their Barriers to Dental Care

Decreasing Food Stealing of Child with Prader-Willi Syndrome Through Function-Based Differential Reinforcement

Brief Report: Pediatrician Perspectives Regarding Genetic Evaluations of Children with Autism Spectrum Disorder

Sensitivity and Specificity of the ADOS-2 Algorithm in a Large German Sample

Toddlers with Autism Spectrum Disorder Can Use Language to Update Their Expectations About the World

Daily Sources of Autonomy-Supportive and Controlling Parenting in Mothers of Children with ASD: The Role of Child Behavior and Mothers’ Psychological Needs

Bohn Stafleu van Loghum

Welkom bij THIM Hogeschool voor Fysiotherapie & Bohn Stafleu van Loghum

Registreer

Login

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Oral Health Behaviours of Preschool Children with Autism Spectrum Disorders and Their Barriers to Dental Care

Decreasing Food Stealing of Child with Prader-Willi Syndrome Through Function-Based Differential Reinforcement

Brief Report: Pediatrician Perspectives Regarding Genetic Evaluations of Children with Autism Spectrum Disorder

Sensitivity and Specificity of the ADOS-2 Algorithm in a Large German Sample

Toddlers with Autism Spectrum Disorder Can Use Language to Update Their Expectations About the World

Daily Sources of Autonomy-Supportive and Controlling Parenting in Mothers of Children with ASD: The Role of Child Behavior and Mothers’ Psychological Needs