Autism-Open Access
Open Access

Stakeholder Perspectives on Needs of Young Adults with Autism in Health Care Transition

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Introduction

Individuals with Autism (IWAs) face significant challenges in accessing appropriate preventative and specialty healthcare services [1-3]. Parents of children with autism are more likely than parents of children with other disabilities to experience unmet healthcare needs and difficulty finding providers with sufficient skills or training to provide specialty services [4]. IWAs also often experience dissatisfaction with their healthcare services, but find it difficult to articulate these feelings as well as their other personal and sensory needs to providers [5-8]. Such barriers to securing adequate and tailored healthcare services contribute to the healthcare inequities IWAs experience, which, in turn, have long-lasting implications for their health and well-being.

The transition to adulthood, inherently a complex and stressful process for most, may exacerbate these underlying challenges for IWAs, emphasizing the critical role of Health Care Transition (HCT) processes for these populations. The Society for Adolescent Medicine (SAM) defines HCT as a multi-faceted, active process that attends to the medical, psychological, social and education/ vocational needs of adolescents as they move from the child-focused to the adult-focused health care system [9]. HCT provides individuals with disabilities the opportunity to increase independence as they engage with adult healthcare systems, thereby empowering them to make healthier decisions and achieve better health outcomes over the life course. Direct implications of effective HCT are improved self-advocacy skills and increased knowledge regarding one’s condition and its associated challenges [10]. With appropriate HCT processes and planning in place, IWAs can better manage their healthcare, communicate with providers and obtain services that meet their specific needs. Despite its importance, the implementation of effective HCT has been infrequent, with little improvement in the past two decades [11,12]. Once Young Adults with Autism (YAWAs) leave pediatric practices, access to adult healthcare and deficiency in adult provider knowledge about support systems are major barriers [13]. For example, Bultas, et al., [14] found that healthcare practitioners have reported challenges communicating with, examining and alleviating fears of patients with autism.

As adequate training of healthcare professionals is one of the most critical contributors to the successful HCT transition of IWAs, it is crucial to examine the needs and perceptions of key stakeholders involved with the transition process. This study explores the perspectives of various stakeholders, including parents/caregivers of YAWAs, clinicians and allied health professionals, regarding the salient needs of YAWAs during HCT. This study’s findings will inform interventions specifically tailored for healthcare providers who work with YAWAs during HCT, thereby optimizing healthcare experiences during this critical junction in the life course.

Materials and Methods

Sample and procedures

Data are from 151 respondents, comprising 50 parents/caregivers of YAWAs, 43 internal medicine or family medicine clinicians and 48 allied health professionals (i.e., 16 Social Workers (SWs), 16 Physical Therapists (PTs) and 16 Occupational Therapists (OTs)). Respondents completed an online survey between May-July 2023 regarding their experiences caring for YAWAs and YAWAs’ specific needs during the transition to adulthood. Participants were recruited through healthcare networks in the region. This study was approved by the Lehigh University Institutional Review Board (IRB).

Measures

The research team utilized validated survey items from Derret, et al., [15] Provider and Staff Perceptions of Integrated Care (PSPIC) survey and Ames, et al., [16] Provider Survey for Transitioning Youth with Autism (PSTYA) and other special health care needs into adult primary care. Surveys were pretested by individuals within each stakeholder group and modified based on feedback before seeking IRB approval.

Analytical approach

Descriptive statistics, including frequencies, percentages, means and standard deviations, were calculated to illustrate the sample’s characteristics and other quantitative findings. Kruskal-Wallis tests were conducted to compare clinicians’ responses by years of experience and allied health professionals’ experiences by educational and work-related characteristics. For open-ended survey responses, one cycle of deductive coding was conducted to identify salient themes.

Results

Parents/caregivers

Quantitative findings: The mean age of the YAWAs discussed in parent/caregiver responses was 22.58 (SD=3.63). Over half (56%) of the respondents indicated that their YAWA did not receive any medical transition services as shown in Figure 1A. Prevalent types of transition services received included help with teaching their YAWA how to manage their own health needs (20%), support in searching for an adult primary care physician (18%), discussions about how healthcare needs may change in adulthood (16%), discussions about how to manage the transition to the adult healthcare system (16%) and information about adult medical specialists (16%).

Figure 1: Reported receipt of medical transition services and special needs related to the transition process among parents/caregivers of autistic young adults (n=50). (A): Medical transition services received by respondents for their young adult with autism; (B): Special needs of young adults with autism during transition process.

When asked about challenges parents/caregivers experienced due to caring for their YAWA, 74% reported that they had concerns regarding their YAWA’s future care needs. Prevalent transition needs that were reported for YAWAs included were scheduling appointments for a specific time or day (32%), assistance with scheduling specialist appointments for additional healthcare needs (30%) and concerns about medication interactions (28%); 34% of respondents stated that their YAWA had no unique needs during the transition process as shown in Figure 1B (Figures 1A and 1B).

Qualitative findings: In the open-ended portion of the survey, 12% of parents/caregivers reported that they were not given help or support in the transition process. Some noted providers’ inexperience with the population (6%) and difficulty with non-medical transition processes (e.g., job skills, financial literacy (6%)). Only 10% of respondents noted that their young adult was comfortable with their new provider. Further, 10% of respondents reported that their child had little or no independence skills.

Clinicians

Quantitative findings: Most clinicians (72%) reported having at least 6 years of experience with IWAs who transitioned from pediatric to adult medicine. When asked how comfortable, on a scale of 0-4 (with higher scores reflecting greater comfort), they were in providing care to new YAWA patients, clinicians’ average score was 2.13 (SD=0.98). Their average comfort level with addressing the needs of YAWAs who identify as LGBTQ+ was 1.85 (SD=1.16) on a scale of 0-4, with 15% stating as not at all comfortable and 10% stating as extremely comfortable. When asked how well their medical training prepared them to care for IWAs, clinicians scored an average of 1.54 (SD=1.02) on a scale of 0-4 (0=not well at all; 4=extremely comfortable), with 15% reporting as not well at all and 0% reporting as extremely well. Further, clinicians with 10+ years of experience reported the highest comfort level working with new YAWA patients during HCT (p=0.03).

When asked to rate their interest, on a scale of 0-4 (with higher scores reflecting greater interest), in attending educational sessions regarding working with YAWAs, clinicians scored an average of 2.81 (SD=1.05), with 33% reporting that they are extremely interested and none reporting as no interest at all. Most clinicians indicated a preference for the delivery of educational sessions to have an online component (Zoom, online asynchronous, hybrid). When asked how important it is for the patients, parents and group home (i.e., Community Living Arrangement (CLA)) staff to be involved in sessions, clinicians scored an average of 3.05 (SD=0.92) on a scale of 0-4 (0=not important at all; 4=extremely important), with 42% indicating extremely important and none stating not important at all (Table 1).

Table 1: Clinicians’ responses by years of experience (n=43).

Qualitative findings: Most clinicians (72%) who worked with transition-age IWAs stated that they were unaware of community resources that support IWAs or individuals with disabilities in general and 74% reported that no training was provided that better prepared them to work with IWAs. Clinicians reported that the most prevalent challenges facing IWAs during transition are issues with employment (72%) and independent living arrangements (59%). Many clinicians (56%) reported that having heightened knowledge of resources (e.g., lists, hubs) would be most helpful in better preparing them to work with YAWAs.

When asked what types of support systems would help providers facilitate a seamless HCT for IWAs, some clinicians (23%) recommended access to social workers, counselors and other mental health personnel and 21% noted that a more systematic process of transitioning services should be in place, such as scheduling transition visits to promote familiarity with the office prior to appointments. Lastly, when asked what types of support systems would help patients and families experience a more effective HCT, the most common responses were access to mental health services (35%) and resources/case managers (28%).

Allied health professionals

Quantitative findings: Allied health professionals, comprising SWs, PTs and OTs, reported an average of 13.95 (SD=9.70) years of experience working in their current profession, with a range of 1-26 years. Most respondents had a master’s degree (67%) and worked in outpatient settings (94%). SWs, PTs and OTs each received specific questions regarding their experiences. When asked how comfortable they felt working with IWAs, there were no significant differences in this response by type of profession. When comparing comfort level by educational and work-related characteristics, there were significant differences by frequency of work with YAWAs (p=0.03) and by frequency of interaction with individuals with disabilities other than autism (p=0.03), such that respondents who had more frequency of contact generally reported higher mean comfort scores. Respondents who had more frequent work with YAWAs reported statistically significantly higher mean confidence in providing or referring to resources for YAWAs (p=0.03).

Qualitative findings: The most common needs SWs reported seeing for YAWAs during the transition to adulthood included housing/independent living skills (63%) and enhancing productive involvement, such as through the workforce or volunteering (63%). SWs were asked what healthcare providers could do to better assist YAWAs and the most prevalent response was having knowledge about and providing resources (38%). SWs noted that conferences (44%), webinars (38%) and grand rounds (31%) would increase their comfort level in providing care to this population. Further, the most common challenge PTs reported experiencing when providing care to IWAs was difficulties with communication and engagement (50%). PTs noted that webinars (31%), readings or online courses (19%) and professional development and collaboration opportunities (19%) would increase their comfort in providing care for YAWAs. When asked the specific challenges in providing care to YAWAs, common responses from OTs were compliance with Home Exercise Program (HEP) (25%), communicating with and understanding patients (19%) and follow-through or caregiver burnout (19%). OTs reported that webinars (38%), conferences (25%) and continuing education opportunities (25%) would increase their comfort level in providing care for YAWAs (Table 2).

Table 2: Thematic analysis of open-ended responses from clinicians, parents/caregivers and allied health professionals.

Discussion

The study’s findings provide important insights about the critical stage of HCT for IWAs from the perspectives of key stakeholders, including parents/caregivers, clinicians and allied health professionals. Over half of parents/caregivers reported that their young adult did not receive any transition services. Other transition-related challenges that parents/caregivers reported were providers’ inexperience with IWAs and their YAWA’s difficulty transitioning outside the medical environment. Clinicians with 10+ years of experience reported the highest comfort levels working with YAWAs. Additionally, clinicians cited employment and independent living as the top challenges for YAWAs. The majority of clinicians also indicated that they did not receive training that better prepared them to work with YAWAs and were unaware of community resources that support IWAs. Among allied health professionals, comfort levels were significantly associated with the frequency of their interactions with IWAs. The top needs SWs indicated were housing/independent living skills and enhancing productive involvement (e.g., employment, volunteering). PTs and OTs indicated that the most significant challenges they faced were difficulties with communication, engagement and compliance.

These findings corroborate with the existing literature, which has widely shown that IWAs continue to experience significant barriers in accessing needed services. These barriers are exacerbated when transitioning into adult healthcare, as IWAs are not only required to find a new provider during a time when they face challenging environmental changes, but also receive little guidance during the transition process. Qualitative survey findings further expanded on these challenges, as parents/caregivers reported obstacles such as providers’ inexperience, the need for improved communication and the desire for transition support outside of the medical environment.

Despite the increasing prevalence of autism diagnoses, clinicians and allied health professionals in this sample reported inadequate training and lack of comfort in treating IWAs [17]. Consistent with our findings, the literature indicates that medical trainees who have experienced more training and exposure to young adults with disabilities report higher confidence and comfort working with them [18]. Most clinician and allied health professional respondents also desired further training and knowledge of resources tailored to IWAs, with many noting the importance of embedding the voices of IWAs into the trainings. Overall, our findings indicate that families of IWAs, clinicians and allied health professionals would benefit from evidence-based guidance in the HCT process, thereby emphasizing the need for a training toolkit that incorporates existing literature and interdisciplinary perspectives.

Limitations

Some potential limitations should be considered when interpreting the findings. First, as our study was cross-sectional, we cannot attribute causality between potential independent variables (e.g., years of experience) and outcomes (e.g., comfort level caring for IWAs). However, our study is primarily descriptive and only aims to compare responses by key sociodemographic and work-related characteristics. Second, the sample sizes for each stakeholder group were small and may not represent the sociodemographic and work-related characteristics of these groups; nevertheless, the scope of this study is descriptive and is intended to provide a broad and preliminary snapshot of personal and health professional perspectives regarding the salient needs of IWAs during HCT. Third, due to recruitment challenges, we did not administer surveys among IWAs to directly ascertain their experiences; however, future qualitative research will be conducted to explore the lived experiences of this population as well as parents/caregivers.

Implications

This study’s findings shed important insights into the unique challenges faced by YAWAs during HCT. This multi-stakeholder exploration indicates that families are often not prepared for this process and struggle in finding adult healthcare clinicians who are experienced and comfortable in caring for YAWAs. Our findings strongly suggest that clinicians would benefit from specifically tailored trainings and increased exposure to IWAs. After gaining knowledge of available community resources through these trainings, they will be better equipped to help families connect with these resources. Similarly, allied health professionals, such as SWs, PTs and OTs, would also benefit from increased exposure to IWAs and training comprising effective communication strategies and local resources that can be shared with patients and families [19].

Conclusion

Importantly, the findings of this study will be used to create trainings similar to the Patients with Disabilities as Teachers (P-DAT) program and will address the needs expressed by key stakeholders. Based on this study’s findings, topics to cover include patient-centered communication techniques; Information on local, regional and national resources and discussion of the importance of patients obtaining information about housing (independent living if possible), sexuality, recreation and employment. This training will enable healthcare professionals to become more comfortable with and welcoming to IWAs who are transitioning from pediatric care. Based on our findings, we posit that increased interaction between providers and IWAs will yield greater comfort during these interactions. Finally, as our study indicates that most areas that need addressing are similar among the clinicians and allied health professionals, a common training curriculum can be created and implemented with minor modifications for each professional group.

Acknowledgement

Funding for this study was provided by the Accelerator grant from Lehigh University's Office of the Vice Provost for Research. We thank the Medical Home Project, Grace Murphy and Mariangela Perrella for their assistance and support with this study. We also thank the study participants for taking the time to provide their valuable insights for our study.

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