Exploration and Comparison of Adolescents With Autism Spectrum Disorder and Their Caregiver’s Perspectives on Transitioning to Adult Health Care and Adulthood

Abstract

Background

Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers’ needs as adolescents transition to adult health care

Objective/Methods

This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers. Caregivers participated in focus groups and adolescents participated in semi-structured interviews

Results

Thematic analysis of dyads’ responses highlighted three common themes: (a) efforts toward independence, (b) low self-efficacy for adolescents’ independence, and (c) desire for independence. Nuances in responses indicated that although members of dyads shared many experiences, they were not communicating these experiences with each other

Conclusions

Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents’ transition to adult health care.

Adolescence is a time of intense physical, psychological, and environmental growth and change. Adolescents with autism spectrum disorder (ASD) experience similar challenges to teenagers without ASD but often to a greater degree owing to their diagnosis. ASD is a complex neurodevelopmental disorder characterized by impairments in verbal and nonverbal communication and social interactions, as well as restrictive or repetitive behaviors (American Psychiatric Association, 2013). In adolescence, symptoms can manifest in limited or inadequate social networks, restricted decision-making ability, and difficulties learning new skills and adapting to new environments (Mazurek, 2014; Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). While increased anxiety is typical for all adolescents during this transition period, the prevalence of comorbid psychiatric conditions is higher for adolescents with ASD (Coury, Jones, Klatka, Winklosky, & Perrin, 2009; Mazurek & Kanne, 2010; Myers & Johnson, 2007).

As adolescents with ASD transition out of the school system, additional strains may make them feel more vulnerable, such as changes in environment and schedule, increased complexity of social relationships, and decreased structured social engagement (Barnhill, 2001; van Steensel, Bögels, & Perrin, 2011; White, Oswald, Ollendick, & Scahill, 2009). Many adolescents with ASD exit high school without a job or higher education placement, resulting in long hours at home with little to do (Cheak-Zamora, Teti, & Maurer-Batjer, 2016; Shattuck etal., 2012; Taylor & Seltzer, 2010). This lack of stimulation and interaction may exacerbate the adolescent’s difficulties with self-esteem, motivation, or current comorbid psychiatric condition (Cheak-Zamora, Teti, & First, 2015; Gillott & Standen, 2007; Taylor & Seltzer, 2011b).

In addition to losing one’s connection with the education system, increased age is associated with a decline in medical, mental health, speech therapy, and case management services for adolescents with ASD (Shattuck, Wagner, Narendorf, Sterzing, & Hensley, 2011). Shattack and colleagues’ (2011) study showed that 2 years after high school nearly 40% of adolescents with ASD received no health care services. The complexity of this transition period and lack of services not only negatively impacts the adolescents, but their caregivers as well. As adolescents transition into adulthood, caregivers report additional psychological stress including increased uncertainty, anxiety, and depression (Cheak-Zamora etal., 2015; Seltzer, Shattuck, Abbeduto, & Greenberg, 2004; Taylor & Seltzer, 2011b).

Adolescent and caregiver outcomes have been shown to improve when adolescents and their caregivers receive timely transition services that marry the exiting of child-based services to the entrance into adult-based care (McDonagh, Southwood, & Shaw, 2006). Health care transition (HCT) services provide structured transition services that help adolescents prepare for an adult-model of care, ensure health insurance retention and a smooth transition to adult care, and promote adolescents’ independent management of health care and life needs (U.S. Department of Health and Human Services, 2008). HCT planning supports have been shown to improve the individual’s health care knowledge, decision-making skills, vocational success, and quality of life in other adolescents with special health care needs (Lotstein, Inkelas, Hays, Halfon, & Brook, 2008; McDonagh etal., 2006). Unfortunately, only 40% of adolescents with special health care needs receive even basic HCT services and 21% of adolescents with ASD receive such services (Cheak-Zamora, Yang, Farmer, & Clark, 2013).

Although we know adolescents with ASD have many complex health care needs, no study has examined how independent adolescents with ASD are at managing the broader range of health care needs (referred to as health-related independence) like talking to the doctor, arranging visits, or managing one’s medications (Cheak-Zamora etal., 2015; DePape & Lindsay, 2015; Levy & Perry, 2011). Caregivers’ perspectives on the service needs of their adolescents have been well documented, but qualitative studies examining and comparing caregivers and adolescents’ perspectives on the transition into adulthood are lacking (Hendricks & Wehman, 2009; Murphy, Clegg, & Almack, 2011). Even with frequent calls for the perspectives of persons with ASD within research, few studies have documented adolescents’ perspectives on what transition supports they need or desire for their future (Blum etal., 1993; DePape & Lindsay, 2015; Grant & Pan, 2011; McDonagh etal., 2006). As a result, researchers and practitioners lack insight into what adolescents with ASD and their caregivers perceive to be their greatest needs during the transition to adulthood and adult care. This lack of understanding significantly affects adolescents’ access to care, safety, quality of life, and ability to live independently, as well as the effectiveness of future HCT interventions (Binks, Barden, Burke, & Young, 2007; Golnik, Ireland, & Borowsky, 2009; Stewart, 2009). The goal of this study was to explore and compare the perspectives of adolescents with ASD and their caregivers by examining their HCT and health-related independence experiences and needs through interviews and focus groups.

Method

Recruitment and Eligibility

Caregivers and adolescents with ASD were recruited from three different ASD treatment and support agencies in three cities in the Midwest United States. Study fliers were provided to agency staff for distribution to clients and patients by mail and displayed in local clinic settings. Interested participants contacted the research team to complete a screening questionnaire. Eligibility criteria for adolescents included being between the ages of 16 and 25 years, having an ASD diagnosis, able to read and speak English, and capable of engaging in required study activities, as measured by adolescent- and caregiver-reported verbal ability. Diagnosis of ASD and age were verified through clinical record review. Caregivers had to be a primary caregiver of an adolescent, age 16–25 years, with an ASD diagnosis to be eligible. For this analysis, we included caregivers and adolescents only if both parties in the dyad completed the research study. Ten caregivers were excluded from this analysis because their adolescents were not able to and/or did not want to participate in the study; no additional adolescents were excluded.

The final sample included 27 caregiver and adolescent dyads. The sample size was determined to be sufficient for data saturation based on findings from previous studies with adolescents with ASD. These studies indicated that a sample of ≥15 participants resulted in repeating patterns and sufficient data to answer research questions about health independence (Cheak-Zamora etal., 2015).

Project Procedures

Caregivers took part in 90-min focus groups, while adolescents participated in 30- to 60-min semi-structured individual interviews. Our previous research provided evidence regarding the best method to use with each group (Cheak-Zamora & Teti, 2015; Teti, Cheak-Zamora, Lolli, & Maurer-Batjer, 2016). Caregivers offer rich dialog in groups and add questions to the discussion as they interact with each other (Cheak-Zamora & Teti, 2015; Teti etal., 2016). Adolescents, on the other hand, prefer one-on-one conversations where they experience less anxiety and overstimulation (Cheak-Zamora & Teti, 2015; Teti etal., 2016).

Group facilitators and interviewers had experience working with adolescents with ASD and were trained on how to use the group and interview guides. The social-ecological model of readiness for transition to adult care (Schwartz, Tuchman, Hobbie, & Ginsberg, 2011) informed the development of the interview guide and overall research questions. Both guides were also developed based on the authors’ previous experience conducting qualitative research with adolescents with ASD (Cheak-Zamora etal., 2015), the health-related independence literature (Cheak-Zamora etal., 2014), and feedback from ASD practitioners, researchers, and caregivers of adolescents with ASD. Group and interview guide questions were pilot tested by clinicians (n = 6), caregivers (n = 4), and adolescents with ASD (n = 2). Pilot testing resulted in wording changes to improve the understandability of questions, and additional specific probes to encourage participant engagement.

Both the focus group and the interview guide included 12 questions and addressed the same content—the question wording was adapted slightly in some cases for group or individual use accordingly (see interview guide in Appendix). The questions covered various areas, including health care needs and experiences, health and self-care skills, safety, challenges, and resources. Adolescent interviews also included prompts, preparatory multiple choice reflection questions, and the use of a white board, to support adolescents’ communication as needed. For example, adolescents answered a multiple-choice question about activities they do to stay healthy to spur their thinking before answering. Interviewers wrote examples the adolescent came up with (e.g., exercise) on a white board to help them think in concrete terms about the question (e.g., What do you need to be able to exercise on your own?). Additional supports for adolescents included: (a) written outlines of the interview process and sample questions before the interview session, (b) the opportunity to bring an advocate (i.e., support person) if needed (none did), (c) an introductory “ice-breaker” period with refreshments and unstructured conversations, and (d) opportunities for breaks if participants needed time to think about a question or appeared nervous or frustrated.

Caregivers and adolescents also completed a demographic survey (Table I). Caregivers and/or study staff assisted adolescents in completing this survey if needed. Caregivers were also present while adolescents (<18 years old) reviewed and signed the assent form or if needed for those reviewing the consent forms (≥18 years old).

Data Analysis

Data were analyzed using methods of thematic analysis to capture and compare experiences and attitudes of health independence between both groups (Guest, MacQueen, & Namey, 2012). Analysis steps included initial and more specific coding, analytical memos, and organizational matrices and reports. After the groups and interviews were conducted, transcribed, and entered into Atlas ti (Scientific Software Development, 2011), the second and third author (i.e., the coders) reviewed all of the transcripts to conduct initial coding of the data. The goal of the first round of coding was to identify all quotes and sections of text that addressed caregiver and adolescent perspectives about independence. Coders analyzed the data sets separately. The coders met regularly to share their initial coding and eliminated major discrepancies so that the first round of coding represented consensus from both coders. Initial coding resulted in an independence data report for each group—100 pages for caregivers and 200 pages for adolescents.

The coders reviewed the independence data reports in more detail to conduct more specific coding. They created a codebook that identified and defined six major independence themes in both data sets (e.g., independence challenges, independence successes, independence desires, making appointments, attending appointments, follow-up care, and health management). Both coders started the analysis (e.g., matching text to codes) by coding 25% of the data independently and then meeting to calculate coder agreement. After the first 25% of coding was complete, agreement was only 60%. The coders clarified the code definitions, and coded another 25% section of data. After the next round of coding, coder agreement was 90%, so the coders completed the analysis on all transcripts—meeting weekly to discuss coding, preliminary findings, and analyses memos.

The coders created a matrix that outlined and defined each of the six themes and a report that listed example quotes under each theme. They reviewed this report, agreed on, collated, and revised the six themes to capture the three most salient themes in the data. The coders then conducted a second round of specific coding using the procedures outlined above for the three specific themes detailed in the results section. Then the coders again created a matrix that outlined and defined each of the three final themes and a report that listed example quotes under each theme by adolescent and caregiver dyad, to organize the data for the results section. The coders compared caregiver and adolescent data to decide how to present and organize the findings. The first author, who conducted many of the interviews, reviewed the matrix and report to ensure that the data appropriately reflected the content of the interviews.

Results

Participants

Demographic and condition-specific characteristics for caregivers and adolescents (n = 27) were presented in Table I. Adolescent participants ranged in age from 16 to 25 years old (⁠$x-$ = 19.19; SD = 2.83). The majority of the adolescent sample was non-Hispanic White and male, while the majority of caregivers were non-Hispanic White and female (mothers of adolescents). Most adolescents within our study had a diagnosis of Asperger’s Syndrome (40.7%) or Autism/Autistic Disorder (33.3%). The majority of adolescents rated their ASD symptoms as mild (75%), but half said their ASD limited their activity compared with their peers. While no adolescent reported having an intellectual disability, 27% of their caregivers reported their adolescent had an intellectual disability. Regarding health care needs, 67% of the adolescents reported having one or more co-morbid conditions with 60% reporting a physical condition and 64% reporting a mental health condition. Within the 27 adolescent and caregiver dyads, we included one set of siblings and 3 mother–father pairs from the same family.

Summary of Results

Three themes arose from both caregivers’ and adolescents’ accounts: (a) efforts toward independence, (b) low self-efficacy for adolescents’ independence, and (c) desire for independence (Table II). Although there were slightly different perspectives presented in caregiver and adolescent narratives for each theme, overall the two groups agreed more than they differed. Each theme and sub-theme were described in further detail below via quotes and text describing overall patterns in caregiver and adolescent discussions and matched quote sets from caregivers and their children. Random initials are used to protect participants’ identity.

Efforts Toward Independence

In group and interview discussions, both caregivers and adolescents identified similar core components to medical care: (a) identifying a medical need, (b) making an appointment, (c) accessing (i.e., getting to) the appointment, (d) attending the appointment, and (e) following up on medical instructions. Both caregivers and adolescents were reluctant to describe adolescents’ independent engagement with any of these steps as completely successful or doable. Similarly, both groups agreed that health-related independence is challenging. For example, E.I. described achieving medical independence as “trying to fit into a round hole when [the child’s] got an [edge].” Her son similarly added that independence was a daunting responsibility. Several other adolescents described health care independence as “uncomfortable,” which also corresponded with E.I.’s analogy.

Caregivers and Adolescents Describe Small Steps Toward Progress

Despite discomfort and apprehension, caregivers and adolescents described small steps they were taking to work toward or even achieve independence. Minor but important discrepancies in caregiver and adolescent accounts did exist, yet both groups commented on efforts toward independence in the areas of provider communication, medication, and appointment management.

For instance, N.T. explained how she wrote a script to help her daughter communicate with a provider independently:

I write down a [script]…“Here’s your name. Here’s your birthdate. Here’s your telephone number.” Because when she gets like nervous, she can’t remember those things, even though she knows all of them. I make her write it all down, I say, “Because they’re going to ask your name, they’re going to ask your birthdate, and they’re going to ask your phone number, and about your medicine.”

B.T. also explained that she is able to talk with a doctor independently. She said that her mom stays in the room, but remarked that “[my mom] doesn’t answer the questions.” B.T. did not reference the role of her mother’s script in her ability to respond to the doctor. E.L. said that they were improving her son’s independence skills via “special classes” but that he still “was not capable of making medical appointments” and “needs help with medication.” When asked to describe his role in managing his medical care independently, U.L. also said that he “hadn’t reached the point yet” to make his own appointments but described his medications in a slightly more positive way than his caregiver:

I do [manage my medications], well, I don’t put them in the container for which day I take them. My Mom does that part. But I know when to take them… I take them in the morning, and then again at night, and I only take one pill at school.

In a similar fashion, K.K. explained how she worked with her son to help him manage his medications more independently with a reminder tool, “We started using the medicine dividers. You just have to remind him in the mornings, go take your pills. And you have to tell him what day. And [then] he can take them by himself.” E.E. agreed that he took his medicine, but said he did so without a parental reminder, all but “one of 31 days in the month.” K.C. described her daughter’s independence by explaining, “She was actually seeing a counselor on her own for a while and going on her own in college.” Her daughter, F.C., also described going to medical appointments without her mother as an example of her autonomy, but in her account, she did not go on her own, but did independently solicit help: “People offered to go with me, [and] I would actually take them up on this.” Although the two groups presented slight differences in the examples that they gave of health independence actions, small steps toward independence were apparent in both groups’ accounts.

Low Self-Efficacy for Adolescents’ Independence

Both caregivers and adolescents expressed low-self efficacy for health care independence. Caregivers’ lack of confidence stemmed from uncertainty about their child’s capacity as well as what role they should assume to best support their child’s autonomy. Adolescents also expressed uncertainty, but their lack of confidence came largely from a lack of experience taking independent health care steps.

Caregiver Uncertainty

T.D. summarized many caregivers’ sentiments when she described her child’s health care independence, “You don’t really know what [adolescents with autism] are capable of. So, [although you support their independence] at the same time you don’t want to push so hard that it’s uncomfortable for them.” Her son admitted he did not make his appointments or take his medicines by himself, but then noted, “The only [thing] I truly need right now [to be independent] is to learn how to operate my washing machine/drying machine.” His statement suggested that although he had a bit more confidence about independence than his mother, her assessment of his abilities was likely correct, as he was not fully considering his health care needs in the definition of his autonomy. Caregivers overwhelmingly said that they did not know how to gauge their child’s potential.

A common thread in discussions was the challenge of identifying a child’s “real” age. When asked if his child could handle more of his medical care independently, K.L. said, “I’m not sure. That’s the biggest part with kids on the spectrum. They’re usually three years behind everybody else, if not more. Honestly, I don’t know if my son will be able to [manage his health care].” His son admitted that his father did encourage him to do more for himself but that he still did not take his medicines by himself or take the lead in conversations with providers because his parents “knew more.” Q.H. similarly explained that her daughter does not go through the aging process like others who “wake up [everyday] an older person…She’s almost 20 now, she still sees herself as 15, she still looks and acts like 15…It will take her longer to get to a neurological age that other people get to quicker.”

Caregivers were also confused about their role in their child’s path toward independence. Decisions about guardianship—the legal appointment of someone to make decisions for another person who is unable to make those decisions on their own—were particularly problematic. Many caregivers said that they felt forced to remain involved in their child’s care even if they described guardianship as against their ultimate goal. For example, T.W. explained:

I guess I felt like it [guardianship] was going to limit him—because what am I saying? I’m saying, “Well, you can’t handle this, so I’m going to handle it for you.” And my goal is for him to be independent?

Many others agreed but were uncertain about what would happen if they were not in the doctor’s office with their child or there to check in regarding problems. B.L. for example said it was just too hard for her to take the risks—“We are afraid to leave him by himself for too long—90% chance he would be fine but 10% chance it would be disastrous.” Her son, M.L., said that “I’d like to live alone someday” but agreed that “I’m worried about being alone. I’m afraid I can’t take care of myself.”

Adolescents Lack Experience

Adolescents were also uncertain about acting independently—mostly because they lacked experience. Most of their examples revolved around the potential discomfort of acting in a new way. For example, M.L. said he would be “nervous” if the doctor wanted to talk to him alone and that it might “go particularly poorly if he was in a ‘bad mood’.” He said his fears stemmed from “not really knowing what would happen.” His caregiver confirmed that he preferred that she take the lead in bringing up issues with providers and that he “did not like to talk about it himself.” Similarly, U.L. also said that going to the doctor alone would be “pretty scary because I don’t know if I’m going to mess up.”

S.U. said going to the doctor without his parents would be challenging because “I’m not used to it… go there on my own, having to know all this information and stuff like that.” His caregiver confirmed that “A lot of times his answers are ‘out there’…And as a parent we know how to interpret [the information he is trying to convey].” T.L. described how he just usually “goes with everything [his parents] do” regarding his health and said his mom even keeps track of his symptoms: “[My mom handles my medicine for anxiety]. I usually pace around, but then my mom notices, and she gets me the medicine.” And then of course there was the issue of talking with the doctor during the appointment. Several adolescents were unsure about what it would be like to talk with a physician because as A.I. explained, “Sometimes [my doctor] will talk to me for like a minute and then she’ll go back and talk to my mom,” which did not establish a routine or familiar rapport. Her mom agreed she felt like she needed to be involved because “she still plays with toys…” and “is not in the mind frame to make decisions on her own.”

Desire for Independence

Nearly all of the caregivers said that independence for their child was a desired goal and most adolescents agreed. What that independence should look like and how it could be achieved were more challenging questions, but both groups’ desire for autonomy for children with ASD prevailed in participant discussions.

Caregivers Want to Promote Child Independence

E.M. said, for example, “That’s what life is supposed to be. They’re supposed to get older. They’re supposed to do their own thing, and they’re supposed to leave you. That’s how it’s supposed to be.” E.I. also noted that independence was “what we’ve [her and her son] been working at all along.” Her son confirmed that “I want to get through life. I mean, I don’t want to end up a person who is still living with their parents… [They] can’t hold my hand forever.”

Several caregivers’ motivation was driven strongly by their recognition and concern that they would not always be there to guide their child. K.N. explained, “I’m always afraid that we’re going to pass away and she’s going to be left here [so] I want her to be totally independent.” B.L. agreed, “You want them to be able to survive after you’re gone…You want them to be able to take care of themselves without you.”

At the same time, caregivers also admitted that they could be part of the problem and that they were willing to make changes. E.I. said, “I feel like I’m Edith Enabler. And her son would do better if I wasn’t.” N.C. explained, “Probably a good portion of [my son’s] problem is cutting the apron strings—me cutting the apron strings. Because I’ve always just been so protective.” B.L. agreed that she could “encourage more input [from her son]” regarding his role in health care independence. During the focus groups, a few caregivers, like E.I., T.W., and E.M., also realized that their children probably could handle more tasks on their own, like going into their appointment independently. E.I.’s son supported their statements by indicating it would be a “boost” to be more involved in his own medical appointments.

For Adolescents, Independence is Key to Higher Quality Care

Many adolescents wanted to overcome their fears for the benefit of independence. F.C. said it was “really important” to have alone time with her doctor and O.X. said that was especially true for “private stuff.” Several adolescents, like E.E., were upset when their doctors did not talk directly to them: “I’ve had doctors that have ignored me. That have experimented on me…I sat there and was like in my head, Okay, f*** you, too.” His caregiver while not aware of (or did not discuss) his anger, admitted that:

I definitely do too much for him…And sometimes I step back and think, “Are you doing way too much? Should you let him make some of these choices and these decisions? Would it make him better able to get out in the world?”

Similarly, E.S. was “Angry, discouraged, and mad” when ignored by doctors. He said:

They probably think, oh, he’s just autistic. He can’t answer these questions because he’ll get confused. Like, yeah, kind of, if you ask the wrong question. If you don’t ask it in [a simple way]…I put my headphones in, like, you know, I’m done with this cr*p.

His mom for her part admitted she encouraged independence but was not sure if he could achieve it and thus, lacked confidence in giving him more autonomy.

S.U. said it did not offend him when his doctor talked to his parents but it would “make me feel more like an adult if they would talk to me more. If they [parents] weren’t there, you know, if I could just do it myself.” T.L. also said it would be “really nice” to be in the room without his parents (“if they would allow it”) to make his own appointment. He explained, that his parents needed to “let me grow up at some point…my mom babies me…It’s embarrassing.” When the interviewer asked if he talked about this with his mom he said, “No, I don’t want to hurt her feelings.” His parents, in their responses, did not indicate that they knew he wanted more freedom and did focus mostly on their concerns about “the skills that he would require to be able to do these things to manage his own health care and his own self care.”

Over and over again, adolescents responded like S.U. when he was asked if he could make his own appointment, “I could probably do it, but I haven’t done it.” U.L. had a specific plan to start acting independently, “By the number of medicines I have to take a day, like, learning how much medicine goes in each slot for the weekend pill box.” He now takes the pills and his parents set up the pillbox but he thought he could do this. S.T. said he explained his pain to his doctor without his mom in the room and it “felt really good.” He said he wanted to try more of these conversations in the future.

Discussion

Much work has been done to improve the lives and functioning levels of children with ASD; however, comparatively little attention has been paid to adolescents as they age into adulthood (Howlin & Moss, 2012; Levy & Perry, 2011). This study aimed to understand and compare the HCT experiences of adolescents with ASD and their caregivers. This ability to examine the caregivers’ and adolescents’ experiences separately as well as analyze their responses together provided a unique opportunity to see how needs and values around health-related independence coincided and deviated. We discovered that (1) adolescents and caregivers are making efforts to improve adolescents’ independence; (2) adolescents and caregivers have low self-efficacy for adolescents’ independence; and (3) both groups desired to improve adolescents’ independence and described ways in which they could achieve independence.

Given the importance of independence to adolescents with ASD’s overall well-being, it was encouraging to see that both adolescents and caregivers prioritized the adolescents’ independence and health-related independence (i.e., ability to independently manage one’s own health care needs). Unfortunately, caregivers described feeling uncomfortable and apprehensive about letting their adolescents become more responsible for their health care needs. Similar to caregivers of adolescents with other special health care needs, caregivers within this study described fears that centered on the adolescents’ safety and protection, which increased as both groups aged. Many caregivers specifically discussed who would take care of their son/daughter/adult-child after they were no longer able to (Kuhaneck, Burroughs, Wright, Lemanczyk, & Darragh, 2010; Phelps, McCammon, Wuensch, & Golden, 2009; Taylor & Seltzer, 2011b).

Caregivers wanted to change their role as the “responsible one” but did not know how to do this while ensuring their own adolescent’s safety. Regardless of disability or condition type, caregivers have been shown to lack preparation and understanding of the transition to adult health care for their adolescent (Reiss, Gibson, & Walker, 2005). Caregivers within this study also had difficulty knowing what responsibilities their adolescent could handle. Caregivers described, at length, how their adolescents with ASD develop differently and often slower than typically developing peers. This made it difficult for them to determine appropriate expectations. Although previous work has acknowledged the difference between chronological age and psychological age of people with ASD, there are few recommendations regarding how to incorporate this into expectations for the transition process for these adolescents (Rehm, Fuentes-Afflick, Fisher, & Chesla, 2012).

For adolescents in this and other studies, independence and/or some level of autonomy were the goals (Cheak-Zamora, Teti, Maurer-Batjer, & Halloran, 2016; Humphrey & Lewis, 2008; Rossetti, Ashby, Arndt, Chadwick, & Kasahara, 2008). Adolescents in this study described their lack of experience as a key component of the fear and anxiety they described. Specifically, they had little to no experience talking to the doctor, arranging visits, and managing medications. Previous studies show that increased anxiety among adolescents with ASD may affect motivation and inhibit the adolescent from taking a more active role in managing their care (Cheak-Zamora & Teti, 2015; Hillier, Fish, Siegel, & Beversdorf, 2011). Young adults with severe disabilities also report little real-world experience and few opportunities to gain experience but fear and anxiety around these issues seem less prevalent among this group than among youth with ASD (Cooney, 2002; Rehm etal., 2012). A better understanding of adolescents’ anxiety issues around new experiences and independence, and how it effects their transition to adulthood among adolescents with ASD, specifically, is imperative.

Caregivers in this study came to a consensus that adolescents with ASD deserve to be treated as adults and to experience an adult-model of care whenever possible. Previous studies indicate that this concept is often hard for caregivers of adolescents with ASD and health care providers to subscribe to, as they have spent years making decisions for these adolescents (Cheak-Zamora & Teti, 2015; Rehm etal., 2012; Taylor & Seltzer, 2011a). Caregivers specifically discussed the need to relinquish control and create opportunities for adolescents to exert independence. Similarly, adolescents stated that they needed their caregivers to “let go” a little so they could gain more experiences and autonomy. Adolescents described knowing that they could do more and wanting to make an effort to take on more responsibility. These are among the first findings to point clearly to adolescents’ willingness to take on more adult responsibilities, particularly related to managing their health care needs. Previous research has shown that even small activities (e.g., doctors asking youth questions, getting youth opinions about treatment choices) promote adolescents’ independence and improve the likelihood of successful transition to adult health care (Bryant & Walsh, 2009; Carter, Austin, & Trainor, 2011; Cheak-Zamora, Teti, Maurer-Batjer, etal., 2016; Kirby, 2016; Rossetti etal., 2008).

Adolescents’ resilience to adversity within this and other studies was also encouraging and indicated that early well-supported opportunities for independence may alleviate much of the adolescents’ anxiety and increase the adolescents’ confidence (Cheak-Zamora, Teti, Maurer-Batjer, etal., 2016; Schwean & Saklofske, 2008). Adolescents showed resilience in that even when describing emotionally charged topics, such as feeling ignored, disrespected in the doctor’s office, and misunderstood, they continued to strategize ways to improve their lives.

To our knowledge, this was the first study that compared adolescents with ASD and their matched caregivers’ experiences during the transition to adulthood. Overall caregivers and adolescents agreed on most issues and shared many of the same concerns. Caregivers and adolescents had similar perspectives on the need for health-related independence but slightly different perspectives regarding the adolescent’s level of independence. Previous research on families with adolescents with various health care needs indicated that caregivers and adolescents report similar barriers and needs but report slightly different priorities and expectations (Bryant & Walsh, 2009; Cheak-Zamora etal., 2015; Hauser & Dorn, 1999). Within this and previous studies on adolescents with ASD, it was not clear the extent to which caregivers and adolescents talk to one another about these issues. Adolescents with ASD may have difficulty communicating these desires to their parents owing to lack of communication skills, lack of clear and concrete goals, and fear (Cheak-Zamora etal., 2015). Participants within this study described many of these concepts including: not wanting to disappoint their parents, not knowing how to explain their desires, and fear of failing if they tried to be more independent. Future research is needed to specifically examine the communication patterns between caregivers and adolescents with ASD to determine whether differences in views and limited communication patterns truly exist.

Study Limitations

This was a qualitative study; as such, we did not aim to collect generalizable data but to explore the experiences of specific caregiver and adolescent dyads in detail. This study may not have captured the experiences of caregivers and adolescents who differ from the study population (e.g., adolescents with some verbal ability, participants from urban areas, racial/ethnic minorities). For adolescents, individual interviews were an effective data collection method, but combining multiple forms of input over a longer time period (e.g., focus groups and individual interviews or multiple interview sessions) would have provided more opportunities for dialog with adolescents with communication challenges and helped them feel more comfortable with the research setting. Using interviews for adolescents and focus groups for parents, although ideal for data collection purposes, may have limited our ability to explore data at the dyad level. Asking additional questions about health-related independence and independence in general may have resulted in more information about specific transition issues and needs. Future research may want to specifically explore HCT and health-related independence topics such as changing physicians and specialists, medication management, sexual and relationship knowledge, and physical and mental health needs. Additionally, we did not conduct subgroup analyses by age, gender, or employment status, as it was not in line with the initial exploratory aims of our analysis. Further examining these factors is extremely important in understanding the population and developing tailored intervention.

Clinical Implications

Although numerous HCT interventions have been conducted on adolescents with special health care needs, such as cerebral palsy and juvenile diabetes, no HCT intervention has been developed for adolescents with ASD (Schwartz etal., 2011; Watson, 2012). This study helped to identify several specific service needs for caregivers and adolescents with ASD. An intervention that included communication skill building for the adolescent and caregivers was an identified need for both groups.

For adolescents with ASD, it is important to remember that independence does not necessarily mean complete autonomy. An intervention that balances adolescent, parent, and provider communication, skills, and support may be more appropriate than one that pushes adolescents to be autonomous (Rehm etal., 2012; Rossetti etal., 2008). Interventions for adolescents with ASD should be tailored to their specific goals and needs, and include education and role-playing activities to enhance communication (Hume, Loftin, & Lantz, 2009). Caregivers will need guidance on how to facilitate and support their adolescents’ independence, as well as individual support as they move from an authoritative to facilitative role within their adolescents’ life (Kuhlthau etal., 2016; Watson, Parr, Joyce, May, & Le Couteur, 2011).

Notably absent in both caregiver and adolescent narratives were accounts of interactions with providers. A HCT intervention for adolescents with ASD should include provider and health system participation. Health care providers are essential in promoting autonomy by asking adolescents health care questions directly, meeting with adolescents individually for at least part of the health care visit, and asking and promoting the adolescents’ self-identified goals. Other adjustments to the health care visit may include alterations to the clinic environment (e.g., providing adolescent with clinic room on arrival), allowing alternative communication methods, and using specific and precise language and instructions (Hall, Kriz, Duvall, Nguyen-Driver, & Duffield, 2015).

Conclusion

Our study used qualitative methods best suited for adolescents with ASD and their caregivers to understand and compare each person’s experiences and perspectives as the adolescent transitions to adulthood. The comparison is important to advance knowledge of both groups’ needs, as their accounts are not always congruent. Although the caregivers and adolescents expressed anxiety and uncertainty about the adolescents’ future, each group described being encouraged and willing to try to promote independence and become independent, respectively. These findings further supported the need for well-established HCT services that are initiated early and involve adolescents and caregivers in the process—as well as providers. Further, our findings reiterate the importance of understanding the perspectives of both caregivers and adolescents and of helping improve communication between caregivers, adolescents, and providers to achieve shared independence goals. Although they often described similar experiences, each group provided distinct views and needs that will assist in building tailored interventions and improving our understanding of this underserved population.

Funding

This work was supported by the Assistant Secretary of Defense for Health Affairs, through the Autism Research Program, Idea Development Award under Award No. W81XWH-14-1-0604. The U.S. Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick MD 21702-5014 is the awarding and administering acquisition office. Opinions, interpretations, conclusions, and recommendations are those of the author and are not necessarily endorsed by the Department of Defense.

Conflicts of interest: None declared.

References