Capturing Experiences of Youth With ASD via Photo Exploration: Challenges and Resources Becoming an Adult

Abstract

Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood, but we have few firsthand accounts of these issues due to youth’s limited participation in research. In this study, we utilized a qualitative methodology, Photovoice, to understand youth’s perspectives on becoming adults. We recruited 11 youth with ASD, aged 18 to 25, from urban and rural counties in Missouri. Youth described their experiences of becoming adults with pictures; attended group, individual, and discussion photo-sharing sessions; and exhibited their work publicly. This methodology facilitated dialogue and the collection of an array of data including 201 transcription pages and 184 pictures. Thematic analysis identified important topics and patterns. Youth’s discussions and photos captured difficulties transitioning out of school, socialization challenges, and their connection with animals. Five themes emerged: (a) difficulty transitioning into adulthood, (b) desires for and problems with relationship building, (c) feeling different from peers and family, (d) animals as a coping mechanism for negative feelings, and (e) animals as a source of companionship. This study is the first to elicit experiences of youth with ASD during the transition to adulthood and coping techniques. Although youth described many challenges, they showed resilience and used animals as a source of support and socialization.

Keywords

autism spectrum disorder adolescence/youth adulthood/independence qualitative methods animals Photovoice

Markers signaling the transition to adulthood are both literal, as youth complete secondary education, and figurative, as youth develop their own identity and separate themselves from their families. Youth with ASD are notably challenged by this transition due to their increased dependence on their families, need for repetition and consistent schedules, and difficulty establishing and maintaining friendships (Cheak-Zamora, Teti, & First, 2015; Myers, Davis, Stobbe, & Bjornson, 2015). By definition, youth with ASD have impairments in social interactions and communication skills, and display restricted, repetitive, or stereotyped actions or interests (Diagnostic and statistical manual of mental disorders, 5th ed., American Psychiatric Association, 2013). Although the disorder affects each individual in different ways, the combination of comorbid physical conditions, mental health deficits, and developmental disability makes transition into adult life difficult for all youth with ASD (Beresford et al., 2013; Shattuck et al., 2012).

Transitioning to Adulthood for Youth With ASD

The transition to adulthood makes these youth particularly vulnerable due to changes in environment and schedule, and increased isolation and complexity of social relationships (Barnhill, 2001; van Steensel, Bögels, & Perrin, 2011; White, Oswald, Ollendick, & Scahill, 2009). Exiting high school results in major schedule changes, such as reductions in scheduled activities (Cheak-Zamora et al., 2015; Hendricks & Wehman, 2009). Prospects after high school are low for youth with ASD, as most exit high school without a job or higher education placement (Shattuck et al., 2012). This often results in long hours at home with little structure. For instance, in the year after high school, more than a quarter of youth with ASD, with no intellectual disabilities, had no occupational, educational, or day activities (Taylor & Seltzer, 2010). For those with no daily activity, most (86%) had a comorbid psychiatric condition, which may be exacerbated by the lack of stimulation and interaction that accompanies school, work, and even adult day care (Taylor & Seltzer, 2011). It is difficult to know how youth deal with these challenges as few studies examine their views (Hendricks & Wehman, 2009; Murphy, Clegg, & Almack, 2011).

Socialization Challenges and Supports

Leaving the education system further isolates youth with ASD due to loss of social interactions and friendships facilitated by the classroom setting. Although the majority of adults with ASD say they have a close friend, less than half meet them or report regular contact (Mazurek, 2014; Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). Furthermore, when measured, youth with ASD’s friendships are few and often of poor quality (Mazurek & Kanne, 2010). Even high-functioning youth with ASD note significant challenges maintaining friendships and perceive themselves personally responsible for these social failures (Barnhill, 2001; Cheak-Zamora et al., 2015). Again, current research has not explored what types of friendships and social interactions youth with ASD prefer and would find fulfilling.

The families of youth with ASD work to improve youth’s lack of friendships and socialization by providing social support and scheduling social activities themselves (DePape & Lindsay, 2016). In particular, typically developing siblings provide social support and peer modeling for youth with ASD (DePape & Lindsay, 2016). However, one longitudinal study found that typically developing siblings reported giving significantly less social support to their siblings with ASD as they transitioned from adolescents into adulthood (Smith & Elder, 2010). As youth with ASD and their sibling dyads age, the typically developing sibling seeks to distance herself or himself from her or his sibling, while the sibling with ASD desires a closer relationship (Petalas, Hastings, Nash, & Duff, 2015). Only one study has evaluated the sibling relationship from the perspective of youth with ASD (Petalas et al., 2015). Clearly, more research into the perspectives of youth is needed to fully understand these relationships and the needs of youth with ASD.

Animal Interaction as a Coping Strategy

It is obvious, then, that as youth with ASD age, they experience a great deal of negative psychological and behavioral outcomes (Mazurek, 2014). Few studies have examined ways to combat youth’s experiences of increased isolation and psychological distress. Although limited, some research points to animals, particularly pets, for combating negative emotions and behaviors in children with ASD. Parents often report that pets, in particular dogs, decrease stress, anxiety, and depression in their child with ASD (Carlisle, 2015; O’Haire, 2013; Smyth & Slevin, 2010; Wells, 2009). Children with ASD showed fewer disruptive behaviors and better therapeutic outcomes when a service dog was present (O’Haire, McKenzie, Beck, & Slaughter, 2013). Biological markers, such as decreased cortisol, blood pressure, and heart rate, have also been used to indicate the likely “calming effect” interactions with animals have on children with ASD (Carlisle, 2014; O’Haire, 2013; Viau et al., 2010).

Unfortunately, little is known about how interactions with animals other than therapeutic dogs affect negative emotions, behaviors, or social interactions in children or youth with ASD. Current research focuses on children and, in most cases, asks caregivers to report on their child’s experiences with animals (Cheak-Zamora et al., 2015; O’Haire, 2013; Smyth & Slevin, 2010). To our knowledge, no study to date has fully explored the youth’s perspectives on their interaction with their pets and other animals, leaving a large gap in the literature (Gillott, Furniss, & Walter, 2001; Hendricks & Wehman, 2009; Murphy et al., 2011; Solomon, 2010).

The Present Study

Youth with ASD experience great difficulty in the transition to adulthood. Most research related to this transition focuses on poor achievement such as low college graduate and employment rates (Shattuck et al., 2012; Taylor & Seltzer, 2011). There is a paucity of research on youth’s own views of this transition and the strategies they utilize to improve their lives (Carlisle, 2015; Hendricks & Wehman, 2009). To address this gap in the literature and improve transition services for youth with ASD, our study utilized an innovative qualitative method, Photovoice, to examine experiences youth faced as they transitioned into adulthood. This study focused on the youth’s overarching discussion about the challenges of becoming an adult and how animals may support their transition.

Method

Eligibility and Recruitment

We used convenience sampling from an autism treatment center along with methods of recruitment: (a) posted study flyers at clinics and resource centers that serve youth with ASD, (b) mailed/emailed recruitment letters to autism center lists, and (c) utilized local providers to solicit participants. Eligibility included having an ASD diagnosis, being between 16 and 25 years of age, and being capable of engaging in group discussion sessions and individual interviews, as measured by youth- and caregiver-reported communication level. Diagnosis of ASD and age were verified through clinical record review.

Eleven participants completed the study. This sample is sufficient for analysis because Photovoice generates complex image and text-based data. For each participant, we have approximately 50 pages of group interview data, 20 pages of individual interview data, and 10 photographs. The amount of data presented from each participant allowed us to explore their experiences and the concepts of interest in depth, and helped achieve data saturation (i.e., the repetition of data patterns; Charmaz, 2006). This is particularly true as Photovoice is used to explore these patterns in data, not to produce generalizable findings. The protocol and small but powerful sample allowed us to learn as much as possible about these participants’ experiences. For these reasons, sample sizes between 10 to 15 participants are common in Photovoice analyses (Catalani & Minkler, 2010).

Rationale for Photovoice Methodology

Photovoice is a flexible, participatory research method in which participants use images and group and individual discussions to identify and share their experiences (Wang & Burris, 1994). Difficulties involving youth with ASD in research and getting them to share their thoughts and experiences in group settings have been well documented (Humphrey & Lewis, 2008; Kaehne & O’Connell, 2010). The multiple modalities used in Photovoice, such as images and group and individual discussions, can help youth with ASD communicate more fully with facilitator and interact with group members (Catalani & Minkler, 2010; Teti, Massie, Cheak-Zamora, & Binson, 2012).

Components of Photovoice have been used in school-based programs for children with ASD to enhance communication and teacher training, and identify gaps in physical activity participation (Carnahan, 2006; Obrusnikova & Cavalier, 2011). To our knowledge, this is the first study to utilize participant photos and group and individual discussions to understand the experiences of youth with ASD from their perspective (Arthur-Kelly, Sigafoos, Green, Mathisen, & Arthur-Kelly, 2009; Obrusnikova & Cavalier, 2011).

Study Procedures

The Photovoice process for this study included an initial group introduction and discussion session, two group photo-sharing and discussion sessions, an individual interview with each participant, and an invitation for participants to share their photos publicly. Group sessions were digitally recorded and had a facilitator and notetaker. Photovoice groups were conducted with three to four participants in each group. Participants attended three weekly, 2-hour sessions and one 1-hour individual interview. All participants had perfect attendance in all sessions. Participants received a digital camera, US$20 for each group session, and US$40 for follow-up individual interviews for participating in the study. The primary author’s Institutional Review Board approved this study.

During the first session, the facilitator explained the purpose of the project, camera logistics, and picture-taking rules (e.g., obtaining consent, off-limit pictures). Participants were asked to capture their experiences of growing up, including facilitators and challenges, through photos. Group members also had an opportunity to get to know each other and brainstorm ideas of photos they might take throughout the week. Facilitators purposefully allowed group members to lead conversations about what to take pictures of and enabled youth full discretion on the pictures they presented in Sessions 2 and 3. The only prompt group members were given was an explanation that the project was about “describing their lives as young adults,” and that they should take “pictures to showcase their lives and the strengths and challenges of becoming an adult.”

During the second and third sessions, the participants reconvened to review and discuss their photographs. Each participant presented the group with approximately five to 10 photos that were most important to them, displayed via a projector, and discussed the meaning of each photo. After each participant discussed the photos, the group talked about their reactions to the images. The facilitator used a semi-structured question guide to encourage youth’s stories and examples based on our previous Photovoice research with vulnerable populations and in consult with an expert ASD clinician and researcher (Teti et al., 2012). Prompts included the following: “What does this photo capture about your life or story with ASD?” “What does the picture mean to you?” and “What challenges or strengths does the image convey?” Again, facilitators intentionally provided general prompts in an effort not to influence the discussion topic and allow for naturally emerging themes.

During the final (third) session, the group also planned public showings of the photos and discussed whom they would invite. Each participant signed a release to present his or her photos for exhibits at the autism center. Following the exhibit, facilitators conducted individual interviews. Questions within the interview guide explored participants’ experiences in the project and gave youth a chance to reflect on their pictures individually (see the appendix).

Data Analysis

The overall goal of our analysis was to explore youth’s experiences of transitioning to adulthood and understand the major themes that emerged in that process. After an initial review of the data, we decided to focus on two main topic areas that appeared most prominent, the transition to adulthood and youth’s relationships with animals. To better understand how these concepts played out in youth’s lives, we used thematic analysis methods (Charmaz, 2006; Dowling, 2008).

All group and individual interviews were transcribed verbatim and edited for clarity. To analyze data, all three authors reviewed the transcripts and photos multiple times to become familiar with the data and key themes. Then, all the authors created a codebook describing the most salient themes, and the first and third authors analyzed the data via coding and analytical memos (Charmaz, 2006). The coding matched the text to themes and progressed in two stages. The first stage was open or more general coding, including coding for 10 general codes (e.g., transition, friendships, coping). The second stage was selective or more specific coding and encompassed coding for the final themes listed in this analysis (Charmaz, 2006). The first and third authors wrote analytical notes throughout this process to highlight key questions about relationships in the data and to refine codes. After coding the data, the first and third authors generated coding reports that collated the evidence for each theme.

For a qualitative analysis to be trustworthy, it must demonstrate credibility, transferability, and conformability (Lincoln & Guba, 1985). Our analysis was credible (i.e., a believable interpretation) because of our prolonged engagement with data, including multiple reads of the transcripts, 6 months of intensive coding and revisions, and team debriefing sessions. The first and third authors coded all of the data independently, and then compared their coding to assess agreement and resolve coding discrepancies. The photo exhibit served as a form of “member checking,” or participant checks on data interpretation, in which participants reviewed and discussed major analysis findings for dissemination, and assured that these findings represented their experiences appropriately (Lincoln & Guba, 1985). Participants read parts of the transcripts that correlated with their photo discussions, and worked with the researchers to draft photo captions and clarify text as needed. Versions of these captions appear in this article. Our analysis is transferable (i.e., readers can draw comparisons with other samples) because we included rich narratives, quotes, and examples from participants. These narratives augment our analyses and allow readers to determine how well the findings may apply, or not, to other populations of youth with ASD. Our analysis demonstrates confirmability (i.e., methods are well described) because we provide detailed information about our methods, recruitment, data collection, and analytical strategies.

Results

Participants

Eleven youth with an ASD diagnosis from rural and urban areas of the Midwest participated in this study. Youth’s age ranged from 18 to 23 years (M = 20.36). While Table 1 provides all demographic information, it is worth noting that three fourths of youth reported having only mild ASD symptoms and a half reported limited ability compared with peers (with 18% not able to answer the question). Furthermore, 27% of participants required assistance to complete the demographic survey, which may serve as a proxy for lower functioning.

Table 1.

Participant Demographic Characteristics and Condition Specific Variables (n = 11).

Variable	Percent
Demographic variables
Gender
Male	63.6
Race
Caucasian	81.8
Other	18.2
Currently Attending School
Yes	63.6
Highest Level of Education
Some High School	27.3
High School/GED	45.5
Some College	27.3
Currently Employed
Yes	63.6
Past Work Experience [volunteer & paid]
Yes	90.9
Participant Income
$10,000 or under	81.8
$10,001-$20,000	9.1
Unsure	9.1
Living Situation
With Caregivers	81.8
With Roommate/Assistance	18.2
Condition specific variables
Diagnosis
Autism Spectrum Disorder	36.4
Asperger Syndrome	63.6
Participant IQ
Low to low average	36.4
Average	36.4
None on Record	27.3
Verbal IQ
Low to low average	27.3
Average	45.5
None on Record	27.3

Summary of Results

The youth provided extensive dialogue within each group and individual sessions totaling 201 pages of transcript and 184 pictures. All youth participated in every aspect of the project (three group sessions and one individual interview). Youth spent a great deal of time in group sessions and through their photos describing the struggles they were experiencing and how their connection with animals helped them cope. Analysis of these data identified five specific themes: (a) difficulty transitioning into adulthood, (b) desires for and problems with relationship building and socialization, (c) feeling different from peers and family, (d) animals as a coping mechanism for negative feelings, and (e) animals as a source of companionship. Below, we describe these themes using pseudonyms to replace youth’s names, all quotes are provided verbatim with the exception of edits for clarity.

Difficulty Transitioning Into Adulthood

Nine out of 11 participants discussed feelings of worry, nervousness, and sadness regarding transitioning to adulthood and adult-related activities. Specifically, these concerns surrounded activities or situations such as driving, hygiene, parental divorce, making friends, school, work, future challenges, cooking, and loss of self and others.

When youth were asked, “What scares you about becoming an adult?” Laura responded, “driving . . . [because] of getting in car accidents like stuff.” In addition, Laura was “kind of nervous about using the oven. I’m worried I could get burned easily and stuff”; and maintaining her hygiene was another worry: “[I’m kind of nervous about] shaving the hair off my arm pits.” Regarding doctor appointments, Nick stated, “It [scheduling appointments] is definitely very anxiety inducing.” Roger said, “I was nervous [about going to the doctor’s appointment by myself].”

All the youth voiced nervousness about supporting themselves and living independently, which, they said, started with going to college and getting a job. Some of the youth voiced concerns about college classes: “I’ve got to worry about college.” Chris explained she is nervous because “it’s [school work] probably 10 times more than high school.” Whereas other youth mainly focused on their “worries about roommates” and establishing adult relationships. Naomi stated that “I don’t know if I can do the roommate thing or not.” In terms of dating, Chris stated, “I’ve thought about it [dating]. But I’m just so shy . . . I can’t even look in people’s eyes. It’s hard looking in my mom’s eyes, so I don’t even know where I’d begin.”

Similarly, the youth voiced difficulty in social relationships as they aged, saying it was “harder” to make friends as an adult than as a child. Naomi attributed this to the fact that “they don’t corral you as an adult,” saying, as a child, “they put you into the public school system with a wide variety of personalities, which has the effects of making you get to know different people.” Zach also mentioned it is easier to “make friends at school.” Nick explained,

I feel like it’s [making friends as an adult] become harder just because I’m not in high school anymore. You have [people] all around you all the time . . . for five days out of the week, you’re eight hours in with other people, and I don’t have that anymore. Sometimes . . . there’ll be an entire day without like seeing anybody . . .

Several youth discussed concerns about losing connection to who they were as children. For instance, Nick stated that he thought about “the loss of connectivity to remembering what it was like to be a kid and carefree . . . and because as a kid, you don’t really care what anybody thinks . . .” When describing the creek bed he played in as a child (Figure 1), Chris described longing for childhood and “a simpler time,” and losing his support system:

. . . when I was that young, I didn’t worry about things so much. I never had anxiety. I remember smiling all the time. Almost everything was funny to me back then . . . You don’t really think ahead to next year or anything. Like me, I’ve got to worry about college . . . So, it kind of reminds me of when you’re a kid . . . every moment is . . . mostly good . . . I’d like to go back to a point when I wasn’t so full of anxiety. At that age, you’re not looking around every corner thinking about . . . what could possibly happen . . . scared of the possibilities, like new problems. I’m scared of go[ing] away from the people who have helped me all this time . . . I’m just scared real bad.

Figure 1.

A simpler time.

Desires for and Problems With Relationship Building and Socialization

All youth took many pictures of friends and places they liked, or wanted, to go with their friends. While a few youth talked about their current friendships, a great deal of the conversation centered on the desire for more and better friendships. Laura stated that she only has friends at “church.” Similarly, Zach said that he had a close friend from church but that he recently moved away. Several commented that they “want more friends.” Chris stated that he did not “have too many friends” because he “feel[s] like there have been some missed opportunities.” Mary said, “I have a lot of friends but they’re people who volunteer at [name] Therapeutic Riding . . . But outside of there, it’s really a hard thing for me.” Eric stated that he does have a best friend (see Figure 2), but he only sees her about once a year.

Figure 2.

My best friend.

Several of the youth voiced, “making friends is really hard,” scary, and anxiety-producing. Chris explained that it is challenging for him to make friends because he is “scared [of] not being accepted by people . . .” Tom is “scared [about] people . . . being mean to me . . . at work.” Matt acknowledged that it is hard for him to be around many people; thereby it is difficult to make friends.

Some of the arduousness with developing friendships resulted from youth’s difficulty recognizing and following social rules. Mary stated, “making friends with people is harder than any person who wouldn’t have it [ASD] . . . Because there are all these rules.” The youth discussed at length stress they experienced because they did not understand the “rules” that underlie social etiquette and making mistakes when conversing with peers. Nick stated, “You [those with ASD] definitely trade in social skills . . .” For example, Eric said,

I’m socially awkward. I always say things at the wrong time or my timing’s always off . . . I always sort of feel like the elephant in the room . . . it’s [social interaction] still an anxious experience because I don’t always understand what’s going on.

Laura mentioned, “I can get nervous having no idea what to say [when talking in groups].” Nick commented, “Social cues I really fail at really hard . . . It just seems like when I’m watching a movie with people, I’ll laugh at a part that nobody else found funny, but it was hilarious to me.”

Despite these challenges, the majority of youth described their continued efforts and enthusiasm in developing new friendships. Nick stated that he tries “to be social and that I try every day to fully understand what somebody is talking about.” In order to make friends, Mary explained that one must “learn through trial and error.” A few of the youth used technology to make and maintain friendships: Nick commented that he used the Internet, Mary used iMessage, and Zach used email. Chris stated that college is an opportunity for him to make friends, he is “excited because going somewhere else means there’s always a chance of being somebody else, you know? New friends and all that.” Ashley described in her picture (Figure 3) that her parents helped her make friends by bringing her “to the games [and] made me talk to people.”

Figure 3.

Game day.

Feeling Different From Peers and Family

All youth described how people with ASD feel different from their peers: “I always think that . . . we’re different,” stated Roger. Some of the youth innately knew they were different from their classmates, as Zach said, “I’m very different.” For Naomi, she “recognized that I was odd, but that’s mostly because I screeched at people, which looking back, makes it a little obvious.” Other youth did not understand why they felt different. Due to having to go to therapy, Mary stated that she felt different from her friends:

I was wondering . . . [why] all my friends didn’t do it [go to therapy]. I’m, like, why. I was wondering, “Why am I going here and none of my friends?” I thought that was something everybody did. But it wasn’t. So I’m, like, “Okay. Why are they not here and why am I doing this?” Then I found out, as I got older, that I had problems and I needed to go get help.

Youth said that they had feelings of sadness and anger because they have difficulties others do not: “It’s taken quite a toll on me. You know, just the feeling of being even a little different is kind of . . . depressing,” commented Chris. For Roger, he explained that his negative feelings stem from the fact that he looks like everyone else, but he is actually different:

Well, it’s kind of different for me because sometimes like at school . . . nobody can really tell I have autism. In some cases they’ll be like, “Hmm. He doesn’t look like he has autism because he doesn’t act like he has it.” But that’s people that don’t really know me . . . We may not show it out in public as much as we do at home. Sometimes people don’t think it but it’s kind of hard . . . We have a lot of weaknesses . . .

Eric explains that it is upsetting to him that people tend to dislike things that are different: “I get so annoyed when people look at something, and they see it as different, and it’s horrible because it’s different.”

The youth compared themselves with their siblings or other family members in addition to their peers. Chris describes this comparison when he said,

I feel like I’m backwards. It’s like . . . my sisters and brothers, they’re all going to school. I’m the one that doesn’t. I’m the oldest one . . . There are so many things that made me feel the way I do. But I guess—it’s the feeling that I was born this way and I’m at a disadvantage compared to other people. And, I don’t know. Even thinking about it really depresses me.

These comparisons made many youth feel inadequate: “Sometimes I can get a little jealous when she’s [younger sister] so maturer than me,” stated Laura. The youth commented that they are not able to do everything their siblings can: “I don’t like driving. I haven’t done it but my sister does,” mentioned Laura. For Eric,

I can’t write out well enough to do math out by hand . . . It’s not a natural thing. For my brother, that’s natural. For a couple of my friends, that’s a completely natural thing to do. I had to teach myself that.

Chris further explained,

I feel like I look up to [my brother], actually, believe it or not. You know, he’s kind of one the people I’m jealous of. He’s pretty responsible. He looks out for [my other brother], and he does it a lot more than I do.

Nick noted that he feels stuck in comparison with his family members:

I want to go somewhere instead of just being trapped in the same town forever because my cousins and my dad and my mom traveled when they were younger than I am. For me to not have done that already makes me kind of like I can’t go as fast or something.

While youth described feelings of jealousy and sadness when comparing themselves with their siblings and family, they also described their love and admiration for their family members. Roger talked extensively about his mother and grandmother (Figure 4) saying, “if I didn’t have her, my life would be a complete mess . . . My mom is the number one person in my life.” Chris said that his brother often “pushes” him to “go out and do things.” Similarly, Tom said his brothers moving out showed him that “I need to move away to a new house.” All participants made statements such as “I love my family,” and took pictures of “family time” and opportunities for “unification of family.” Chris expressed the group’s sentiment about their family well when he said, “my brother is the only person I can really talk to. Like, I can really be myself around him. There’s just this security around him that I don’t have around anybody else.”

Figure 4.

Strong support.

Animals as a Coping Mechanism for Negative Feelings

The youth spent a considerable amount of time discussing their pets and animals. All youth, except one, talked about animals, and half of the youth took pictures of animals. One of the youth commented on how everyone in her group had “commonality with animals.” Another youth described how animals helped people with ASD by stating, “there’s too many [ways to name].” The youth explained that animals influence their lives in many ways, from being a source of happiness to one of solace and companionship.

Many youth discussed the pure joy that interacting with animals brought them. Eric hoped that when people looked at his pictures they would understand that he “loves animals [because] I have those experiences [playing with exotic animals] in my life make me happy. They bring me a lot of joy, and that’s why I keep them.” For Eric, animals have provided him with an outlet through which he can release his pent-up feelings: “[It is an] expression of the kind of person that I am, and I’m crazy about animals . . . I’m very restrained with other parts of my life, but with animals, I go all-out.” Ashley said that being around animals makes her feel “happy.” Matt said that he loved animals and envisioned his future as, “[being] on the farm with other people and with animals.”

Youth also spent a great deal of time describing how animals helped them deal with their emotions. As Chris said, “[animals are] a good moral support for anxiety . . . They relieve stress . . . They can strengthen people, not just with Autism. They’re just kind of like a small cure.” Furthermore, through rehabilitating dangerous animals (see Figure 5), Eric “learned that keeping calm was an important thing for me . . . that’s a strength that keeping them has taught me.”

Figure 5.

Keep calm and rehabilitate animals.

Mary, who attended equestrian therapy since childhood, explained that horses allowed her to rid herself of stress:

It’s basically one of the best things in the world for me. Like, when I’m on a horse, I’m free. I’m free from anything else . . . You get your mind off what’s going on in your life and just focus on the horse. . . A lot of things go through my head.

Youth voiced that they feel the joy that animals have brought them during times of sadness. In a particular difficult time in her life, Mary relied on a horse to help her cope: “After my grandpa died in my junior year of high school. I went back to where I often started grooming. I basically cried into her mane. It was that bad. It was rough. Let’s just groom” (see Figure 6).

Figure 6.

Let’s just groom.

Animals as a Source of Companionship

Several of the youth explained that animals mediate loneliness as their pets act as confidants, team members, and friends. Chris took a picture of his cat Larry (see Figure 7) and explained that they are the only ones in the house most of the time, which causes him to be lonely. He is glad he has his cat for company but said that he needs people more than he needs the cat. Also, Chris said that the picture shows that “He’s [the cat’s] kind of like me, doesn’t want to be alone.”

Figure 7.

Don’t want to be alone.

When asked how horses help her, Mary described that horses act as both a confidant and a friend:

For me, it’s rough [dealing with Asperger’s]. It’s like I can’t always explain stuff to people, but I can do it through a horse . . . They totally . . . I feel like they [horses] understand me better than most people do . . .They understand what I’m going through, but they can’t talk back. They don’t judge you. They basically can be your best friend when you don’t have any close friends . . . See, and that’s a big deal in my life.

While explaining the meaning of the picture (Figure 8), Mary stated, “We’re a pair. We’re a team. So, I get, like, I understand her, and she understands me.”

Figure 8.

She understands me.

Animals also served as social catalysts in which to induce social interactions and diminish social isolation. Mary explained that she was unable to make friends outside of work, but at work, she has friends because they are around horses. This is because “animals and horses, in general—they mean a lot to me, and they basically help me with my self-confidence and stuff.” Ashley commented that “they [dogs] can help them [individuals with ASD] socialize because they have to get them out and walk them and . . . everything.” Animals were a special interest to several youth and they used their knowledge to talk to others. Eric said, “I used to be the kid who could go to the [name] zoo and get the attention of the zoo keepers because I knew as much as they did.” Furthermore, several youth volunteered at animal shelters, veteran clinics, or pet stores as a way to socialize with others and play with the animals.

Discussion

Exploring the perspectives of youth with ASD with a participant-driven method like Photovoice allowed us to gain an in-depth understanding of the youth’s experiences as they transition to adulthood. All participants reported struggling with the transition. Many described feeling worried about the new roles and responsibilities they faced, developing and fostering friendships and everyday socialization. Youth relayed feelings of sadness and loneliness when describing how they were different from peers and family members. Yet even when talking about emotionally charged topics, youth continually described ways to improve their lives and often referred to animals as sources of comfort, support, and socialization.

Transitioning to Adulthood for Youth With ASD

The transition to adulthood seemed to come with feelings of trepidation, fear, and sadness. Youth reported feeling stressed about learning new skills, taking on new responsibilities, and generally being able to live as an adult. Youth expressed feelings of sadness about not being able to achieve adult goals or do other adult activities such as driving or traveling. Within the few studies that examine youth’s thoughts about adulthood, findings are mixed. Humphrey and Lewis (2008) and Rossetti and colleagues (2008) found that youth with ASD wanted more independence and took pride in being “in charge,” while Cheak-Zamora and Teti (2015) found that although some youth wanted to be more independent, others were comfortable with their parents taking charge and did not want to change this. The latter study postulated that comfort and fear was inhibiting youth with ASD from taking a more active role in their lives. Youth’s fearfulness and depth of fears about adulthood, reported in this study, signal a need for discussions about adulthood and skill-building activities in school and home. Including youth in their Individual Education Program (IEP) or allowing a child to help at home (e.g., prepare meals) are small ways to involve youth in their move to adulthood and normalize the process (Carter, Austin, & Trainor, 2012; Kirby, 2016).

Socialization Challenges and Supports

The number of youth reporting feelings of sadness and loneliness was not surprising, but the impact and severity of these feelings was unexpected. The youth’s ability to talk about these feelings freely and in depth with photos were remarkable. A major cause of sadness was youth’s belief that they were fundamentally different from others. Previous research found that youth with ASD who saw themselves as being different from their peers had elevated levels of depression (Barnhill, 2001; Hedley & Young, 2006). In addition to feeling different, many youth in our sample talked about feelings of jealousy and not being as good as others. It was particularly challenging for youth with younger siblings, as the youth felt that they should be the more mature and accomplished sibling.

Although there are several studies about typically developing sibling’s views and feelings about their sibling with ASD, only one study asked youth with ASD about their relationship with their typically developing siblings (Petalas et al., 2015). Youth within this study reported similar descriptions of admiration and affection toward their typically developing siblings as in our findings (Petalas et al., 2015).

Youth within the previous study also discussed how ASD made them different from their siblings and affected their relationship. Our findings add legitimacy to the importance of the topic “sibling interaction” for youth with ASD, as it was a natural theme coming from youth themselves with no prompting on this topic. If youth’s comparisons with their siblings are resulting in feelings of “depression” and “jealousy” and feeling “backwards” or “being stuck,” it is important for parents to know and have discussion with their youth about these feelings (Petalas et al., 2015). Taken together, our findings show that youth with ASD would benefit from exposure to experiences and autonomy similar to those their siblings experience whenever possible (Carter et al., 2012; Kirby, 2016). Furthermore, siblings could be a great asset in work to help youth with ASD learn new skills and become more independent (Smith & Elder, 2010).

In addition to feeling different from peers, lack of close friendships made youth feel lonely and isolated. Social deficits and lack of quality friendships are well-documented challenges for youth with ASD (Barnhill, 2001). Several studies report that youth with ASD often have small social networks and “poor-quality” friendships (Mazurek, 2014; Petrina, Carter, & Stephenson, 2014). Furthermore, loneliness has been associated with higher levels of anxiety and depression, even when controlling for ASD symptom severity (Mazurek, 2014). The open discussions youth had within this study about friendships, loneliness, and isolation expanded current survey data, particularly related to the daily fatigue youth felt from trying to understand and follow social rules.

Animal Interaction as a Coping Strategy

Many of the youth in this study seemed to combat feelings of loneliness and isolation with interactions with animals. Youth showed pictures of and talked about how animals were their best friends or the only companion that understood them. Previous research supports these findings showing that children with ASD seem more comfortable interacting with animals than with people (Carlisle, 2015; Prothmann, Bienert, & Ettrich, 2006; Solomon, 2012). Youth within our study talked about struggling to understand their peers’ social cues and interactions. These individuals may feel more at ease interacting with animals, since they lack complex facial features and body language (Prothmann, Ettrich, & Prothmann, 2009).

Our findings also support the idea that pets may increase youth’s overall confidence and confidence in social situations. Bonding with animals is a unique way to help children and youth with ASD participate in peer and community activities and likely form relationships based on their mutual interest in animals. For instance, youth within this study described taking on more independence and socializing with their community by volunteering at an animal shelter, walking a neighbor’s dog, or joining a pet owners group. Fleshing out the association between social activity and pet ownership is especially important for youth with ASD as many have low self-esteem and confidence due to their social deficits (Barnhill, 2001; Carlisle, 2015). These findings support the inclusion of animals in more community and therapeutic settings for youth with ASD, as well as home life. Further research is needed to examine the link between confidence, socialization, and animal-human interaction for youth with ASD (Carlisle, 2014).

For many of the youth, animals relieved their feelings of anxiety and helped them deal with sadness and loss. Several studies have shown a positive physiological influence of animal-human interaction on adults with ASD through reduced cortisol (stress signal; Kirschbaum & Hellhammer, 1989; Viau et al., 2010). Although understanding the physiology of stress is important, it does not provide a complete picture of how animals influence youth and their moods. Youth within our study showed that animals play a bigger role than these biomarkers can explain by referring to their animals as “a small cure” or “having saved me.” Youth’s descriptions of feeling “anxious,” “depressed,” “sad,” and “scared” indicate the importance of examining mental health issues in youth with ASD transitioning to adulthood. Although animals were helpful to many youth within this study, understanding the diagnosis and therapeutic needs of this population is of the utmost importance (Strang et al., 2012).

Seeing Youth’s Perspectives Through Photovoice

The Photovoice methodology was essential to understanding youth’s perspectives on the challenging emotions they face and how animals may have helped mediate those feelings. Taking pictures provided the youth with a new way to express themselves and an outlet to describe their experiences. General picture descriptions served as a natural starting point for discussion. Youth were able to easily transition from describing the actual picture to making associations to other parts of their lives.

Including youth with ASD, especially those with varying functioning levels, in research is imperative to the field (Humphrey & Lewis, 2008; Kaehne & O’Connell, 2010; Mitchell & Beresford, 2014). Youth benefited from participating in the project by being able to tell their story and meeting other youth with similar perspectives. Multiple youth said, “the feeling of being around others that have your problem” was the best part of the project. In light of these experiences and gaps in the literature, Photovoice is a suitable method for not only eliciting the perspectives of youth with ASD on varying topics but also as a tool to support and empower youth.

Limitations

We explored the perspective of youth with ASD through qualitative methods. Our findings are not intended to generalize beyond our sample and may not encapsulate the experiences of youth who differ from our sample in terms of demographics. We asked the youth to express themselves with photos and discussions, but we did not ask the youth questions about possible mental health diagnoses, problems, or interactions with animals directly. These were naturally occurring topics, and the results may have changed if we asked these questions specifically.

Conclusion

To our knowledge, this study is the first of its kind to elicit the thoughts, feelings, and experiences regarding transitioning into adulthood, socialization, and coping techniques of youth with ASD. Although youth described many challenges, they showed resilience and used animals as a source of comfort, support, and socialization. We utilized an innovative methodology, Photovoice, that gave youth multiple modalities in which to express themselves. By prioritizing youth’s language, we can truly understand their viewpoints. Youth discussed challenges and feelings of stress and anxiety during the transition to adulthood, desire for but difficulty maintaining friendships, and feeling different from peers and family. Throughout the discussions, youth talked about ways in which they stayed motivated, kept trying, and used animals as a source of compassion and companionship. Utilizing animals to promote social engagement and within the therapeutic setting for children and youth may be extremely beneficial and something that should be researched more extensively. This study demonstrated the utility of a new research methodology that improves youth participation, facilitates empowerment, and improved our understanding of the needs of youth with ASD as they transition into adulthood.

Footnotes

Appendix

Acknowledgements

This study could not have been successful without the assistance of the Thompson Center for Autism and Neurodevelopmental Disorders.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Richard Wallace Faculty Incentive Grant Program supported this work.

Author Biographies

Nancy C. Cheak-Zamora is an Assistant Professor in the Department of Health Sciences at the University of Missouri. She conducts innovative research to inform policy making, advocacy, service delivery, and research for youth with special health care needs and adults with chronic medical conditions. Dr. Cheak-Zamora’s quantitative and qualitative research on health care transition for youth with Autism Spectrum Disorder is the first in the field and should lead to improvements in health care delivery. She has published numerous articles in this area of health care delivery, health care transition, and youth advocacy and has two federally funded grants supporting this work.

Michelle Teti is an Assistant Professor in the Department of Health Sciences at the University of Missouri. Her research is dedicated to improving health and behavioral outcomes among people who live with serious and stigmatized illnesses. She is especially interested in how people make sense of their illness experiences and how the meaning-making process can improve their health and well-being. Dr. Teti’s current program of research focuses on designing and testing photo-narrative and photovoice-based interventions – in which people use photography to express and share their health stories and experiences – to improve the lives of people living with HIV/AIDS and other stigmatized and serious illnesses.

Anna Maurer-Batjer is a Master of Social Work and Master of Public Health student at the University of Missouri. She has a special interest in maternal and child health, particularly in terms of neurocognitive development. Through her graduate research assistantship, she has explored the use of Photovoice and photo-stories among youth with Autism Spectrum Disorder.

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