Journal of Autism and Developmental Disorders

15-11-2024 | Original Article

Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider

Auteurs: Jacqueline Wood, Charles Dukes, Kelly B. Kearney

Gepubliceerd in: Journal of Autism and Developmental Disorders

Abstract

Adults with autism spectrum disorder (ASD) often experience co-occurring physical and mental health challenges throughout their lives. At the same time, they frequently face many barriers to accessing proper care. Strategies to improve communication and understanding can help to mitigate some of these barriers. This study examined the effects of an instructional package, including a video module accompanied by guided notes, the Autism Healthcare Accommodations Tool (AHAT), and behavior skills training (BST) to teach adults with autism to communicate their unique needs and request accommodations to a medical provider. Three participants independently completed a self-guided video module that modeled how to complete the guided notes and AHAT to identify appropriate accommodations and prepare for a doctor’s appointment. Once finished, participants were taught to verbalize their needs and accommodations through BST. Results showed that participants’ communication skills increased after introducing the instructional package, generalized to a novel provider and maintained once the instructional package was removed. This intervention proved to be an effective and socially valid method to improve communication for adults with autism in medical settings. Implications and suggestions for future research are discussed.

Academic Autism Spectrum Partnership in Research and Education (AASPIRE) (2020). AASPIRE Healthcare Toolkit: Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers. https://autismandhealth.org/.

Bishop-Fitzpatrick, L., & Rubenstein, E. (2019). The physical and mental health of middle aged and older adults on the autism spectrum and the impact of intellectual disability. Research in Autism Spectrum Disorders, 63, 34–41. https://doi.org/10.1016/j.rasd.2019.01.001

Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 2707–2719. https://doi.org/10.1007/s10803-016-2816-3CrossRefPubMedPubMedCentral

Brossart, D. F., Laird, V. C., & Armstrong, T. W. (2018). Interpreting Kendall’s tau and Tau-U for single-case experimental designs. Cogent Psychology, 5(1). https://doi.org/10.1080/23311908.2018.1518687

Cashin, A., Buckley, T., Trollor, J. N., & Lennox, N. (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder. Journal of Intellectual Disabilities, 22(1), 96–108. https://doi.org/10.1177/1744629516665242CrossRefPubMed

Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale, Second Edition (SRS-2). Western Psychological Services.

Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814–823. https://doi.org/10.1177/2F1362361315577517CrossRefPubMed

Dern, S., & Sappok, T. (2016). Barriers to healthcare for people on the autism spectrum. Advances in Autism, 2(1), 2–11. https://doi.org/10.1108/AIA-10-2015-0020CrossRef

Deserno, M. K., Borsboom, D., Begeer, S., & Geurts, H. M. (2018). Relating ASD symptoms to well-being. Psychological Medicine, 48(7), 1179–1189. https://doi.org/urn:nbn:nl:ui:31-685db94b-c732-4c92-92ba-5932f9afabb6

Gaigg, S. B., Flaxman, P. E., McLaven, G., Shah, R., Bowler, D. M., Meyer, B., Roestorf, A., Haenschel, C., Rodgers, J., & South, M. (2020). Self-guided mindfulness and cognitive behavioural practices reduce anxiety in autistic adults: A pilot 8-month waitlist-controlled trial of widely available online tools. Autism, 24(4), 867–883. https://doi.org/10.1177/1362361320909184CrossRefPubMedPubMedCentral

Gast, D. L., & Ledford, J. R. (2018). Single Case Research Methodology. Applications in special education and behavioral sciences (3rd ed.). Routledge.

Grob, C. M., Lerman, D. C., Langlinais, C. A., & Villante, N. K. (2019). Assessing and teaching job-related social skills to adults with autism spectrum disorder. Journal of Applied Behavior Analysis, 52(1), 150–172. https://doi.org/10.1002/jaba.503CrossRefPubMed

Hand, B. N., Angell, A. M., Harris, L., & Carpenter, L. A. (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism: The International Journal of Research and Practice, 24(3), 755–764. https://doi.org/10.1177/1362361319890793CrossRefPubMed

Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77–88. https://doi.org/10.1177/1088357608329827CrossRef

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232–238. https://doi.org/10.1192/bjp.bp.114.160192CrossRefPubMed

Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30(2), 69–76. https://doi.org/10.1097/yco.0000000000000308CrossRefPubMed

Kornacki, L. T., Ringdahl, J. E., Sjostrom, A., & Nuernberger, J. E. (2013). A component analysis of a behavioral skills training package used to teach conversation skills to young adults with autism spectrum and other developmental disorders. Research in Autism Spectrum Disorders, 7(11), 1370–1376. https://doi.org/10.1016/j.rasd.2013.07.012CrossRef

Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(6), 1916–1930. https://doi.org/10.1007/s10803-016-2722-8CrossRefPubMedPubMedCentral

Lorenc, T., Rodgers, M., Rees, R., Wright, K., Melton, H., & Sowden, A. (2016). Preventative coordinated low-level support for adults with high-functioning autism: Systematic review and service mapping. EPPI-Centre, Social Science Research Unit, UCL Institute of Education. https://eppi.ioe.ac.uk/CMS/Portals/0/PDF%20reviews%20and%20summaries/Autism%20support%202016%20Lorenc%20report.pdf University College London.

Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown, T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400. https://doi.org/10.1007/s10803-019-04049-2CrossRefPubMedPubMedCentral

Mukaetova-Ladinska, E. B., Perry, E., Baron, M., Povey, C., & Autism Ageing Writing Group. (2012). Ageing in people with autistic spectrum disorder. International Journal of Geriatric Psychiatry, 27(2), 109–118. https://doi.org/10.1002/gps.2711CrossRefPubMed

Nicolaidis, C., Kripke, C., C., & Raymaker, D. (2014). Primary care for adults on the autism spectrum. The Medical Clinics of North America, 98(5), 1169–1191. https://doi.org/10.1016/j.mcna.2014.06.011CrossRefPubMedPubMedCentral

Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). Respect the way I need to communicate with you: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824–831. https://doi.org/10.1177/1362361315576221CrossRefPubMedPubMedCentral

Nicolaidis, C., Raymaker, D., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., Gerrity, M. G., Kripke, C., Platt, L., & Baggs, A. (2016). The development and evaluation of an online healthcare toolkit for autistic adults and their primary care providers. Journal of General Internal Medicine, 31(10), 1180–1189. https://doi.org/10.1007/s11606-016-3763-6CrossRefPubMedPubMedCentral

Nicolaidis, C., Schnider, G., Lee, J., Raymaker, D. M., Kapp, S. K., Croen, L. A., Urbanowicz, A., & Maslak, J. (2021). Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale. Autism, 25(3), 767–773. https://doi.org/10.1177/1362361320949734CrossRefPubMed

Nuernberger, J. E., Ringdahl, J. E., Vargo, K. K., Crumpecker, A. C., & Gunnarsson, K. F. (2013). Using a behavioral skills training package to teach conversational skills to young adults with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(2), 411–417. https://doi.org/10.1016/j.rasd.2012.09.004CrossRef

Parker, R. I., Vannest, K. J., & Davis, J. L. (2011). Effect size in single-case research: A review of nine nonoverlap techniques. Behavior Modification, 35(4), 303–322. https://doi.org/10.1177/0145445511399147CrossRefPubMed

Rakap, S. (2015). Effect sizes as result interpretation aids in single-subject experimental research: Description and application of four nonoverlap methods. British Journal of Special Education, 42(1), 11–33. https://doi.org/10.1111/1467-8578.12091CrossRef

Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972–984. https://doi.org/10.1177/1362361316661261CrossRefPubMed

Ryan, G., Brady, S., Holloway, J., & Lydon, H. (2019). Increasing appropriate conversation skills using a behavioral skills training package for adults with intellectual disability and autism spectrum disorder. Journal of Intellectual Disabilities, 23(4), 567–580. https://doi.org/10.1177/1744629517750744

Saqr, Y., Braun, E., Porter, K., Barnette, D., & Hanks, C. (2018). Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism, 22(1), 51–61. https://doi.org/10.1177/1362361317709970CrossRefPubMed

Schendel, D. E., Overgaard, M., Christensen, J., Hjort, L., Jørgensen, M., Vestergaard, M., & Parner, M. (2016). Association of psychiatric and neurologic comorbidity with mortality among persons with autism spectrum disorder in a Danish population. JAMA Pediatrics, 170(3), 243–250. https://doi.org/10.1001/jamapediatrics.2015.3935CrossRefPubMed

Scruggs, T. E., & Mastropieri, M. A. (2013). PND at 25: Past, Present, and Future trends in summarizing single-subject research. Remedial and Special Education, 34(1), 9–19. https://doi.org/10.1177/0741932512440730CrossRef

Southby, K., & Robinson, O. (2017). Information, advocacy and signposting as a low-level support for adults with high-functioing autism spectrum disorder: An example from the UK. Journal of Autism and Developmental Disorders, 48, 511–519. https://doi.org/10.1007/s10803-017-3331-xCrossRefPubMedCentral

Stein Duker, L. I., Kim, S., Pomponio, H. K., Mosqueda, A., L., & Pfeiffer, B. (2019). Examining primary care health encounters for adults with autism spectrum disorder. The American Journal of Occupational Therapy, 73(5), 1–11. https://doi.org/10.5014/ajot.2019.037226CrossRef

Vannest, K. J., Parker, R. I., Gonen, O., & Adiguzel, T. (2016). Single case research: Web based calculators for SCR analysis (Version 2.0) [Web-based application]. College Station, TX: Texas A&M University. Retrieved from http://singlecaseresearch.org

Vogan, V., Lake, J. K., Tint, A., Weiss, J. A., & Lunsky, Y. (2017). Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal, 10(2), 264–270. https://doi.org/10.1016/j.dhjo.2016.11.002CrossRefPubMed

Vohra, R., Madhavan, S., & Sambamoorthi, U. (2017). Comorbidity prevalence, healthcare utilization, and expenditures of Medicaid enrolled adults with autism spectrum disorders. Autism, 21(8), 995–1009. https://doi.org/10.1177/1362361316665222CrossRefPubMed

Westerberg, B., Bäärnhielm, S., Giles, C., Hylén, U., Holländare, F., & Bejerot, S. (2021). An internet based intervention for adults with autism spectrum disorder: A qualitative study of participants experiences. Frontiers in Psychiatry, 12, 1–12. https://doi.org/10.3389/fpsyt.2021.789663CrossRef

Wolf, M. M. (1978). Social validity: The case for subjective measurement or how behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11, 203–214.CrossRefPubMedPubMedCentral

Woolfenden, S., Sarkozy, V., Ridley, G., Coory, M., & Williams, K. (2012). A systematic review of two outcomes in autism spectrum disorder - epilepsy and mortality. Developmental Medicine and Child Neurology, 54(4), 306–312. https://doi.org/10.1111/j.1469-8749.2012.04223.xCrossRefPubMed

Titel: Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider
Auteurs: Jacqueline Wood
Charles Dukes
Kelly B. Kearney
Publicatiedatum: 15-11-2024
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-024-06635-5

Bohn Stafleu van Loghum

Welkom bij Erasmus MC & Bohn Stafleu van Loghum

Registreer

Login

Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider

Abstract

Bohn Stafleu van Loghum

Welkom bij Erasmus MC & Bohn Stafleu van Loghum

Registreer

Login

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen