Research paper
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

https://doi.org/10.1016/j.dhjo.2016.11.002Get rights and content

Abstract

Background

Adults with Autism Spectrum Disorder (ASD) encounter many difficulties finding and accessing health care services. Despite this, few studies have considered the health service use patterns of adults with ASD without intellectual disability (ID).

Objectives

The current study examines a diverse range of medical and mental health services and supports, as well as adults' personal experiences accessing and using these services, barriers to service use, and reported unmet service needs.

Methods

Forty adults (ages 18–61 years) with ASD without ID completed surveys every two months about their health service use for a total of 12–18 months. Bivariate analyses were conducted to understand the individual demographic and clinical factors associated with rate of service use, satisfaction with services, and barriers to health care.

Results

Results indicated that, beyond a family doctor, the most commonly used services were dentistry, individual counseling, and psychiatry. Individuals who had medical problems experienced significantly more barriers to service use than those who did not, and those who had medical and mental health problems were less satisfied with services.

Conclusions

Findings highlight the challenges adults with ASD without ID face accessing appropriate, quality services to meet their needs, particularly those with complex medical and mental health issues. Service providers must strive to provide adequate health care to this population who may become distressed if their needs are left unmet.

Section snippets

Participants

Participants included 40 adults who self-reported a clinical diagnosis of Asperger Syndrome (AS) or ASD without ID (ages 18–61; M = 35.88, SD = 11.70). Participants were deemed eligible if they were at least 18 years old, reported to have received a diagnosis of AS or ASD without ID, had the capacity to self-report on their health history and service use, and completed the first and last study questionnaires across a 12–18 month period. ASD diagnosis was confirmed through the use of a

Demographic and clinical characteristics

Demographic and clinical characteristics of the study sample are described in Table 1. Approximately half of the sample was male (45.0%) and most were Caucasian (87.5%). Over three-quarters (82.5%) of adults were engaged in structured daytime activities (e.g., work, school, etc.), and just over half (62.5%) had received a college diploma or higher education (See Table 1). Three-quarters of adults indicated they had a mental health problem (e.g., mood disorder, anxiety disorder, substance abuse,

Discussion

This is one of the first studies to track and explore current health care service use patterns, satisfaction with services, and barriers to service use, from the perspective of adults with ASD without ID. Results identified that adults with ASD without ID used a mean of 4.9 different health services across the study period. Adults were generally somewhat satisfied with the services they received, but encountered multiple barriers finding and accessing services. Those who reported being least

Conclusion

Findings from the current study highlight the challenges adults with ASD without ID face accessing appropriate, quality services to meet their needs, particularly those with complex medical and mental health issues. Service providers must strive to provide adequate health care to this population who may become distressed if their needs are left unmet. Other important accommodations and strategies to facilitate improved health care service for adults with ASD without ID may include: helping

Funding

This research was funded by the Canadian Institutes of Health Research (MOP 102677).

Conflicts of interest

The authors have no conflicts of interest to disclose.

Acknowledgements

The authors would like to thank the adults who participated in this study. Also, many thanks to Melissa Paquette-Smith for her assistance with data collection and management.

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