Characteristics Associated with Healthcare Independence Among Autistic Adults

Overview

Journal Res Autism Spectr Disord

Publisher Elsevier

Date 2023 Aug 16

PMID 37583680

Authors

Anne Longo

Dan Gilmore

Jennifer Garvin

J Madison Hyer

Daniel Coury

Christopher Hanks

Susan Moffatt-Bruce

Amy Hess

Brittany N Hand

Affiliations

Soon will be listed here.

Abstract

Background: Healthcare independence refers to someone's ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults.

Method: We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n=19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n=11), who provided proxy-reports.

Results: Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence.

Conclusions: Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence.

References

Amrhein V, Greenland S, McShane B . Scientists rise up against statistical significance. Nature. 2019; 567(7748):305-307. DOI: 10.1038/d41586-019-00857-9. View

Kim G, Choi E, Kim H, Kim H, Kim H . Healthcare Transition Readiness, Family Support, and Self-management Competency in Korean Emerging Adults with Type 1 Diabetes Mellitus. J Pediatr Nurs. 2019; 48:e1-e7. DOI: 10.1016/j.pedn.2019.03.012. View

Heron L, Agarwal R, Greenup J, Maddux M, Attong N, Burke S . Disparities in healthcare transition support received by adolescents with special healthcare needs. J Appl Res Intellect Disabil. 2019; 33(2):180-192. DOI: 10.1111/jar.12658. View

Cheak-Zamora N, Petroski G, La Manna A, Beversdorf D, Farmer J . Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version. J Autism Dev Disord. 2020; 51(6):2036-2046. DOI: 10.1007/s10803-020-04690-2. View

Chen M, Chang Y, Marraccini M, Cho M, Guo N . Comprehensive attention training system (CATS): A computerized executive-functioning training for school-aged children with autism spectrum disorder. Int J Dev Disabil. 2022; 68(4):528-537. PMC: 9351557. DOI: 10.1080/20473869.2020.1827673. View

Phung J, Goldberg W . Promoting Executive Functioning in Children with Autism Spectrum Disorder Through Mixed Martial Arts Training. J Autism Dev Disord. 2019; 49(9):3669-3684. DOI: 10.1007/s10803-019-04072-3. View

Kraemer H . Is It Time to Ban the P Value?. JAMA Psychiatry. 2019; 76(12):1219-1220. DOI: 10.1001/jamapsychiatry.2019.1965. View

Gilmore D, Harris L, Longo A, Hand B . Health status of Medicare-enrolled autistic older adults with and without co-occurring intellectual disability: An analysis of inpatient and institutional outpatient medical claims. Autism. 2020; 25(1):266-274. DOI: 10.1177/1362361320955109. View

Chavalarias D, Wallach J, Li A, Ioannidis J . Evolution of Reporting P Values in the Biomedical Literature, 1990-2015. JAMA. 2016; 315(11):1141-8. DOI: 10.1001/jama.2016.1952. View

10.

Wood D, Sawicki G, Miller M, Smotherman C, Lukens-Bull K, Livingood W . The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014; 14(4):415-22. DOI: 10.1016/j.acap.2014.03.008. View

11.

Hand B, Benevides T, Carretta H . Suicidal Ideation and Self-inflicted Injury in Medicare Enrolled Autistic Adults With and Without Co-occurring Intellectual Disability. J Autism Dev Disord. 2019; 50(10):3489-3495. DOI: 10.1007/s10803-019-04345-x. View

12.

Sawicki G, Lukens-Bull K, Yin X, Demars N, Huang I, Livingood W . Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2009; 36(2):160-71. PMC: 3415980. DOI: 10.1093/jpepsy/jsp128. View

13.

Stewart K, Chahal N, Kovacs A, Manlhiot C, Jelen A, Collins T . Readiness for Transition to Adult Health Care for Young Adolescents with Congenital Heart Disease. Pediatr Cardiol. 2017; 38(4):778-786. DOI: 10.1007/s00246-017-1580-2. View

14.

Leekam S, Tandos J, McConachie H, Meins E, Parkinson K, Wright C . Repetitive behaviours in typically developing 2-year-olds. J Child Psychol Psychiatry. 2007; 48(11):1131-8. DOI: 10.1111/j.1469-7610.2007.01778.x. View

15.

Haarbauer-Krupa J, Alexander N, Mee L, Johnson A, Wise J, Gupta N . Readiness for transition and health-care satisfaction in adolescents with complex medical conditions. Child Care Health Dev. 2019; 45(3):463-471. DOI: 10.1111/cch.12656. View

16.

Barrett S, Uljarevic M, Baker E, Richdale A, Jones C, Leekam S . The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A): A Self-Report Measure of Restricted and Repetitive Behaviours. J Autism Dev Disord. 2015; 45(11):3680-92. PMC: 4608982. DOI: 10.1007/s10803-015-2514-6. View

17.

Beal S, Riddle I, Kichler J, Duncan A, Houchen A, Casnellie L . The Associations of Chronic Condition Type and Individual Characteristics With Transition Readiness. Acad Pediatr. 2016; 16(7):660-7. DOI: 10.1016/j.acap.2016.06.007. View

18.

Barrett S, Uljarevic M, Jones C, Leekam S . Assessing subtypes of restricted and repetitive behaviour using the Adult Repetitive Behaviour Questionnaire-2 in autistic adults. Mol Autism. 2018; 9:58. PMC: 6258483. DOI: 10.1186/s13229-018-0242-4. View

19.

Johnson K, McBee M, Reiss J, Livingood W, Wood D . TRAQ Changes: Improving the Measurement of Transition Readiness by the Transition Readiness Assessment Questionnaire. J Pediatr Nurs. 2021; 59:188-195. DOI: 10.1016/j.pedn.2021.04.019. View

20.

Saqr Y, Braun E, Porter K, Barnette D, Hanks C . Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism. 2017; 22(1):51-61. PMC: 5788079. DOI: 10.1177/1362361317709970. View