Abstract
Background:
Although autistic individuals can require more health care services than the general population, the care they receive is often suboptimal. During young adulthood, autistic patients face additional developmental barriers and achieve poorer medical outcomes as they transition between pediatric and adult health systems. However, little is known about their transition needs, perceptions, and experiences.
Methods:
This study examined the health care experiences and transition perceptions of 213 autistic young adults aged 18–26 years (mean age 22.72). Both formally diagnosed and self-identified autistic individuals participated in the study. Our research team used mixed methods online survey, including an original health care experience questionnaire, an adapted measure of health care transition readiness, and short-answer questions. We used nonparametric statistical tests to examine relationships between quantitative variables, and qualitative responses were analyzed using an inductive, open-coding approach.
Results:
Quantitative analyses revealed health care environments to be least accessible for individuals who are female or gender nonconforming, nonspeaking, and/or in their late teenage years. These individuals also showed lower levels of involvement in their own care compared with other subgroups. Conversely, those with a history of regular medication management reported higher levels of readiness for health care transition. Open-ended survey responses clustered around the following five themes: (1) deciding whether to disclose an autism diagnosis, (2) medical staff’s current understanding of autism, (3) discrimination, (4) communication challenges, and (5) unique needs.
Conclusion:
Participants in this study preferred to be actively involved in their health care and required supportive, knowledgeable providers and inclusive environments to accomplish this goal. Noting this, it is important for health care providers to assess individual needs and preferences and design focused supports for autistic patients transitioning from pediatric to adult care.
Community Brief
Why is this an important issue?
After young people reach a certain age, they can no longer be seen by a pediatrician. Therefore, part of being a young adult is finding a doctor specializing in adult medicine. Autistic adults are not well served in the health care system, and many receive less optimal care than neurotypical adults. This may be because doctors in adult medicine expect their patients to be active participants who are comfortable in and knowledgeable about health care settings yet do not take steps to make the setting accessible for autistic people.
What was the purpose of this study?
The purpose of this study was to explore the health care transition experiences, needs, and perceptions of autistic young adults.
What did the researchers do?
In this study, we surveyed 213 autistic young adults about their health care experiences. The online survey included multiple-choice, yes/no, and write-in questions. We used the multiple-choice and yes/no answers to see what type of health care experiences people had, how accessible health care was to them, and how involved they were in their own care. We read the write-in answers and sorted them into themes by grouping similar responses together.
What were the results of the study?
Autistic young adults in this study described several challenges, including deciding whether to tell their doctor about their autism diagnosis, interacting with medical staff who do not understand autism (or discriminate against autistic people), communicating their needs to medical staff, and wanting their needs to be accommodated while also being treated as an adult. The people in this study who had an especially hard time transitioning to adult health care were (1) women and gender nonconforming, (2) nonspeaking, (3) teenaged, and (4) not regularly taking medications. A person who belongs to none of these groups might still have a hard time transitioning to adult health care, and someone who belongs to all these groups might find transition very easy. However, it is important to know who is most at risk so that we can identify ways to help make transition easier for autistic young adults.
What do these findings add to what was already known?
These findings include new information on how accessible health care is to autistic young adults, how involved they are in their care, and how ready they are to transition to adult health care. This study explored different factors that affect all these outcomes. We used that information to draw conclusions about different ways to support autistic young adults who are going through this important time of growth and change.
What are potential weaknesses in the study?
This study was an online survey, which may not have been accessible to some autistic adults with certain language-related disabilities or intellectual disabilities. In addition, most of our participants were able to use spoken language. The experiences of other autistic people, particularly those who are nonspeaking, may be different from these results.
How will these findings help autistic adults now or in the future?
By knowing what factors make it difficult for autistic young adults to transition to adult health care, we can understand how to make the transition easier. For example, medical staff can help by making the environment more sensory-friendly, using the autistic patient’s preferred method of communication, and seeking out up-to-date knowledge on autism.
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