Although the prominence of spirituality and religious connections among the people of the United States is well documented, little is known about the place of faith in the lives of youth with developmental disabilities. In this qualitative interview study, we examined the perspectives of 20 young people with intellectual disability or autism on their faith, spiritual expressions, and disability. Participants identified key spiritual expressions and themes reflecting the importance of faith in their lives. They also shared perceptions of their disability in the context of their faith, highlighting affirmation and acceptance of their disability. We offer recommendations to families, faith communities, and service systems for supporting the spiritual formation, expression, and connections of young people with disabilities.
Spirituality and faith have long held a prominent place in the lives of most Americans (Putnam & Campbell, 2010). Although recent trends suggest some declines in certain indicators of religiosity, the majority of people in the United States say they consider religion to be important in their lives and more than one third attend religious services every week (Gallup, 2012; Pew Research Center, 2012). Spirituality's pervasiveness within current culture has been accompanied by considerable interest among researchers in documenting the religious lives of Americans and understanding religion's impact on individuals and communities. In addition to a multitude of polls and surveys addressing the religious beliefs and behaviors of respondents, thousands of empirical studies have addressed the associations between spirituality, faith community involvement, and myriad indicators of health and well-being (Chida, Steptoe, & Powell, 2009; Koenig, 2009; Koenig, King, & Carson, 2012; Smith, McCullough, & Poll, 2003). Taken together, findings from these studies suggest that faith matters and makes a difference in the lives of millions of children, youth, and adults in the United States.
Far less attention, however, has focused on the place of faith in the lives of people with intellectual and developmental disabilities (IDD) who also reside in communities across the country. Although the position statements of several national advocacy organizations emphasize the importance of understanding and supporting the spiritual lives of young people with autism, intellectual disability (ID), and other related disabilities (e.g., American Association on Intellectual and Developmental Disabilities/Arc, 2010; TASH, 2010), surprisingly little is known about the faith practices of these individuals. The paucity of research indicates that this dimension of the lives of people with IDD may be overlooked within professional circles (Carter, 2013). A glance at prevailing practices within service systems (e.g., Carter, 2007; Turner, Hatton, Shah, Stansfield, & Rahim, 2004) and congregations (e.g., Ault, Collins, & Carter, 2013b; Griffin, Kane, Taylor, Francis, & Hodapp, 2012) provides a second indicator that supports for practicing faith may also be limited.
Among the modest number of studies exploring spiritual and religious expressions of individuals with IDD, most have focused entirely or primarily on experiences of older adults (e.g., Bassett, Perry, Repass, Silver, & Welch, 1994; McNair & Swartz, 1997; Minton & Dodder, 2003). For example, McNair and Smith (2000) found that slightly more than half of adults with developmental disabilities (DD; ages 19 to 62) attending a sheltered workshop in California reported attending church in the past week. Shogren and Rye (2005) reported that more than 90% of individuals with ID (ages 25 to 76) in their Ohio sample prayed, believed in God, and thought about God; more than 75% attended worship services. Similarly, interviews with 21 adults with ID in the United Kingdom conducted by Turner and colleagues (2004) suggested that religious identities and prayer lives of these individuals were strong and vibrant. Collectively, prior descriptive studies indicate religious identities, congregational involvement, and spiritual expression can hold considerable importance in the lives of adults with IDD, just as they do for adults without disabilities.
In the present study, we focused on understanding the place and practice of faith in the lives of transition-age youth and young adults with IDD. Adolescence and early adulthood represent a window when spiritual formation is particularly salient, greater autonomy emerges in the practice of faith, and supports are increasingly sought outside of the family (Lerner, Roeser, & Phelps, 2008; Smith & Denton, 2005). It is also a time during which both personal and collective identities are strongly shaped (Erikson, 1968; Templeton & Eccles, 2006). Several studies offer brief glimpses into the ways in which young people with disabilities are involved in congregational activities and other forms of religious expression. However, the primary informants in most of these studies have been parents (e.g., Abells, Burbridge, & Minnes, 2008; Ault, Collins, & Carter, 2013a; Orsmond, Krauss, & Seltzer, 2004; Vogel & Reiter, 2003; Wagner, Cadwallader, & Marder, 2003) or educators (e.g., Kleinert, Miracle, & Sheppard-Jones, 2007). Although others closely involved in the lives of these young people could certainly speak to some aspects of their spiritual lives, the personal and internal nature of some expressions highlight the importance of hearing first hand from these youth. Lifshitz, Weiss, Fridel, and Glaubman (2009) assisted 54 Jewish adolescents with an ID in completing questionnaires addressing their religious beliefs, behaviors, and motivations. Additional research is needed to explore the diverse forms these spiritual expressions take, the importance they might hold, and their perceived impact on the lives of these young people.
In addition to understanding how young people with IDD express spirituality and view its importance, we were also interested in learning how they understand their disability in the context of their faith. Parents have assigned such diverse meanings to their children's disabilities as: gifts from God, abundant blessings, disabled by design, tests of their faith, punishment for sin, and many others (e.g., Masood, Turner, & Baxter, 2007; Poston & Turnbull, 2004; Treloar, 2002). Similarly, theologians have suggested (and also contested) many ways of interpreting disability, ranging from a condition to be healed, a reality to be avoided, a defect to be remedied, or a gift to be received (e.g., Avalos, Melcher, & Schipper, 2007; Brock & Swinton, 2012; Creamer, 2009). Understanding how disability is viewed by those who experience it first hand could reveal different pictures, which may align with or challenge these other perspectives in important ways. However, we found no studies focused on how young people themselves view their disability and their relationship with God in light of that disability. Templeton and Eccles (2006) suggest that personal and collective identities are multidimensional and can be shaped by multiple factors, including one's spiritual beliefs and religious affiliations. The ways in which one's identity as a person with a DD might interact with their personal or collective religious identity during this particular period of development is intriguing to consider.
The purpose of this study was to give voice to youth and young adults with IDD on the place of faith and congregational connections in their lives. Specifically, we sought to answer the following two research questions: (1) What is the place and prominence of faith in the lives of youth and young adults with developmental disabilities? (2) How do these youth view their disability within the context of their faith? This phase of our project centered on young people who had some involvement in a congregation and for whom faith was considered to be a relevant dimension of life.
Participants were 20 youth with disabilities drawn from a larger project examining the strengths, spirituality, and well-being of young people with ID or autism. These youth ranged in age from 13 to 21 (M = 16.9). As shown in Table 1, 6 participants were female (30%) and 14 were male (70%). Three participants had two siblings (15%), 11 had one sibling (55%) and 6 had no siblings (30%). The majority of youth were White (n = 15, 75%), 3 were African American (15%), 1 was Asian (5%), and 1 was multiracial (5%). According to their caregivers, 12 youth had autism (60%), and 8 had an ID (40%). Caregivers also reported 3 youth received free/reduced-price meals (15%) and 17 did not (85%). Although the majority of participants (70%) were reported to rarely or never exhibit challenging behaviors (e.g., aggression, self-injury) outside the home, 25% were reported to exhibit these types of behaviors sometimes (information was missing for one youth). In terms of religious tradition, all parents of interviewed youth reported affiliations with Christian denominations. Information about the extent to which these youth were involved in various congregational activities is reported in Table 1.
Participating youth were drawn from a larger study involving 450 parents from the state of Tennessee who completed a variety of assessments related to their adolescent or young adult child with a disability. To participate in the overarching project, parents must have had at least one child between the ages of 13 and 21 with an ID or autism. We interviewed a subset of these parents (n = 28) who (a) indicated they were willing to participate in the interview process, (b) lived within a 50 mile radius from the research team, (c) considered faith an important aspect of their lives and attended a local congregation, and (d) had a child who used speech as their primary form of communication. We also invited the youth of these parents to participate in an interview. Nine youth (two of whom were siblings) were considered by their parents to have complex communication challenges that would make it impossible to share their perspectives in an interview format; the remaining 20 agreed to participate.
To recruit youth, we contacted parents by phone and asked whether their child with a disability might be interested in being interviewed for a study about the place of faith and spirituality in their lives as well as the things that may help them thrive. We explained to parents the types of questions we would ask their child (see Table 2). When parents confirmed their child's interest in participating, we set up an interview at their preferred time and location. We followed up the phone call with a mailed invitation letter restating the purpose of the interview and a brief description of the study along with a youth consent or assent form. The youth had to sign the form indicating they had read the invitation letter and voluntarily agreed to participate. Potential participants were asked to return the form via mail or in-person prior to the interview.
Interview Procedures and Protocols
We obtained data through in-person interviews conducted by six members of an interdisciplinary team with expertise in the areas of special education, counseling, biblical studies, and/or pastoral ministry. We conducted interviews with youth over a period of 6 months at locations chosen by participants (e.g., college campus, home, community center, church). Interviews averaged around 23 minutes and lasted as long as 76 minutes. Participants received a $20 retail gift card for their time. Nine interviews were conducted individually with the youth with disability. For 11 of the interviews, one or two family members were also present to support the youth during the interview process. Only one member of our team was present to facilitate each interview.
We developed a semistructured interview protocol consisting of 15 questions with 12 follow-up probes designed to elicit young people's perceptions and experiences of spirituality and religion. Before each interview, the interviewer told participants they could skip any question they did not want to answer or stop the interview at any time. As listed in Table 2, the interviewer asked seven questions about their personal lives, strengths, and well-being; four questions about involvement in a faith community and spiritual expressions; and four questions about the youths' self-perceptions in the context of their faith. The interviewer used various follow-up probes when asking about congregational involvement depending on the youth's response. For example, we asked for additional details about any congregational or community activities, as well as information about the nature of their participation. Immediately after each interview, the interviewer recorded field notes focused on impressions of the interview and potential questions and procedural revisions for the next interview. All interviews were audio recorded, transcribed, and subsequently de-identified (and pseudonyms applied).
We coded transcripts from 20 interviews using the following process. First, one member of the research team independently coded the two lengthiest transcripts. The team member created initial categories within our two research questions: (1) What is the place of faith in the lives of youth and young adults with disabilities? (2) How do these young people view their disability within the context of their faith? The team member assigned initial codes to segments of the interview addressing each of the above questions. Some key words emerged out of these initial codes and evolved into initial categories. The principal investigator reviewed these two transcripts and the initial coding framework and provided feedback on the initial coding scheme. Then the team member coded the next two transcripts. After coding the first four transcripts, the team member met with the principal investigator to discuss codes, resolve discrepancies, and reach consensus on an initial coding scheme. The process was repeated for the next set of eight transcripts and then again for the original eight transcripts. Through each discussion, new codes were added, existing codes were renamed, codes were merged with other codes or collapsed into overarching categories, and code definitions were edited through consensus. The coding scheme thus evolved iteratively throughout this process. We used a qualitative software program, NVivo 10 (2012), to aide in developing the coding scheme and managing the data.
After coding all the transcripts, the remainder of the research team involved in conducting interviews reviewed the themes and findings, and provided feedback. We conducted a thematic pattern analysis to identify themes and collapse codes with similar themes into overarching categories. Coding frequencies calculated by NVivo 10 (2012) aided in detecting patterns and helping us discern key issues emphasized by participants. However, we interpreted participants' meanings within the context of the surrounding conversation rather than by relying exclusively on frequencies (Huberman & Miles, 1994). We finalized the coding scheme and emergent themes following the pattern analysis. We also kept memos throughout the coding process to capture reflections and to keep a record of insights related to the data.
We identified a number of spiritual expressions and activities illustrating the place and prominence of faith and spirituality in the lives of participants. Specifically, participants shared personal stories and perspectives regarding (a) the expressions of faith in their lives, (b) the importance of that faith, and (c) how they view themselves and their disabilities in the context of their faith. We present themes in the following sections, noting the primary disability category of participants in parentheses.
Expressions of Faith
When asked about their involvement in a congregation and their spiritual expressions, participants talked about a number of activities related to (a) personal prayer, (b) beliefs and behavior, (c) congregational activities, (d) rites of passage, (e) social connections, (f) ministry to others, and (g) other expressions. Although some of these expressions were unique, most reflected some common ways in which young people without disabilities express their faith (Bridges & Moore, 2002; Smith & Denton, 2005).
Nineteen youth affirmed personal prayer as a primary avenue of spiritual expression. Prayer was described largely as individual conversations with God, often taking the form of prayers of thanksgiving, blessing, prayer for oneself, and/or prayer for others. Participants described various forms of prayer, including praying out loud, in their head, with others, by themselves, before a meal, before going to bed, and sometimes simply folding their hands and closing their eyes. Some participants addressed how prayer made them feel (e.g., “good,” “He will take care of us”) and others spoke of the times they have felt led to pray (e.g., when they “feel like it's a tight situation”). For example, Maurice (ID) talked about his prayer life, saying, “[I] pray a lot …. Sometimes to myself when I'm at school. When I'm at home with my grandma, and then when I go to bed, I pray out loud.” Most participants described praying for others, particularly for family members. Many participants also described various ways they knew God answers their prayers (e.g., “through my heart;” “if you listen closely, you'll hear It whispering in your ear;” “He talks in my heart”). Joseph (ASD) offered one example of how God answered his prayer:
A few years ago, during basketball camp, I was praying previously, I was starting to doubt that He existed. So I prayed for Him to show me that He did exist. I didn't hear …. When we were doing drills in the basketball camp at our church, I thought I heard Him saying “my dear child.” And that got me excited!
Beliefs and behaviors
Eleven youth talked about various beliefs and behaviors as markers of their faith and spirituality. Some youth anchored their own religious beliefs within a specific faith tradition. When asked what spiritual beliefs were important to him, Luke (ASD) talked about his beliefs in God, “Well like Jehovah Witnesses-like Jehovah's basically the one true God. That's what we believe.” However, many of their comments focused on the different practices through which they expressed their faith, including studying Scripture, following particular commands, and giving financially. Participants identified Bible study classes and personal devotions as the contexts within which they study Scripture. Several participants talked about Scripture study as something they appreciated and wished to do more. For example, when asked what she liked about church, Meredith (ASD) said, “The Bible studies …. I like what I learn.” Joseph said, “ … and I also feel like I need to read the Bible more…just to know about…to read more about what being a Christian really is about.” A couple of participants also talked about striving to obey rules of their faith, such as the Ten Commandments and commands to love and respect others. In addition to these behaviors, two participants highlighted financial giving (i.e., tithing, donations for the homeless) as the avenue through which they expressed their faith.
Participating in religious activities within their congregation was another prominent avenue of spiritual expression. Among the 13 participants addressing this, commonly mentioned activities included attending worship services, Sunday school, youth fellowships, and retreats or camps. Worship services were highlighted by many participants as something they particularly enjoyed. For example, Amanda (ASD) noted that what she liked most about her church was “the worship music and … how they do it and … the pastors, how they speak.” Mike described the importance of special services such as foot washing, getting ashes, and Stations of the Cross. Youth fellowships, retreats, and camps were named as important activities in young people's lives, albeit much less frequently. When they did occur, these activities almost always took place within the context of ministries not directly affiliated with the youth's own church (e.g., Chrysalis, Young Life Capernaum). These participants had limited involvement in the youth activities run by their own congregations. For example, Shawn (ASD) vividly described his Chrysalis experience:
It's kind of like a … it doesn't really involve the church, unless you are currently in the church that it's being held in … but it doesn't involve the church actually. What it kind of is, it's more of a place actually [to] escape for a while, kinda focus on yourself and your relationship with God, or even just to focus on relationship with other things towards other people, to kind of ease off tensions or let tears fly. I guess it's just to give others the opportunity to teach you … it's a loving environment.
Religious education (i.e., Sunday school) was mentioned by only two participants as a context for spiritual expression. In both cases, these classes were in inclusive settings that involved learning alongside peers without disabilities.
Rites of passage
Although less prominent, five participants mentioned rites of passage as one important form of spiritual expression. Rites of passage were described as ritual events marking a transition from one status to another, such as baptism, communion, and confirmation. Maurice (ID) talked about his own decision to be baptized, “I wanted to accept the Lord. So I wanted to get baptized.” James (ASD), however, talked about his baptism as a decision made by others, “My grandmother made it … her choice for me to be baptized…so she came from another country and she saw me get baptized.” Nick (ASD) identified communion as his favorite thing to do at church and he spoke about his experience serving communion:
Like one of my favorite things about doing communion with my church friends is where I can get to break the bread and we make homemade grape juice. Everybody is supposed [to] say that, you suppose to take the bread out of heaven—the bread of heaven. You put the bread inside…you suppose to put the bread inside of the juice—the cup of salvation…. And I got to serve it to other people with my church friends.
Likewise, Mike (ID) also remembered his confirmation experience and recalled the priest who gave him the confirmation, “…his first name is Lir. His last name is Green. He…when I was at the church I got…confirmed.”
Social connections within the faith community were mentioned by 11participants as a context for spiritual expressions. Some youth made these connections through specific social activities such as games, sports, outings, potlucks, and meals. Others developed these social connections simply by being a part of the faith community. Several youth described these individuals as their “church friends,” some of whom appeared to have clear importance in their lives. When talking about his best friend at his congregation, Shawn (ASD) said, “I've told him things that have given him more insight to me than I have to myself … that's why we're good friends.” However, others described their “church friends” only as acquaintances. For example, Joseph (ASD) talked about his desire to be closer to others in his church, “I do have a few friends, they're not … I don't think we're as close to my actual friends but they're very nice, they're kind. I do sometimes wish that they pay more attention to me, I guess.”
Service or ministry to others
Nine participants mentioned acts of service or ministry to others as a primary form of spiritual expression. Serving within the congregation through ushering, greeting, serving communion, and singing in the choir were all mentioned as contexts within which youth shared their time and talents with others. A smaller number of participants talked about serving beyond the congregation to benefit their community in practical ways such as serving in respite ministries (i.e., Stone Soup), Room in the Inn, or local food banks. Many participants talked about how they enjoy serving or ministering to others. For example, Spencer (ASD) highlighted how serving others at Stone Soup mattered so much to him, “[I] basically help out people with disabilities and I used to be one of those people that was like—one of the people they're helping out. So now I'm helping out with them so … it's pretty cool.” Meredith (ASD) made a similar point when describing her service at Room in the Inn, “To give back. They don't have anything. They live on the streets, and live in the shelters. They don't have their own home, no family that would take them in. I feel, I feel sorry for them.”
Three participants highlighted other spiritual expressions not already mentioned. Two participants shared how they experienced God in personal, intimate, and unexpected ways. For example, James (ASD) talked about how he experienced the power of God at his congregation,
And you know, sometimes the power of God will move so strongly that people will just start falling out. I haven't fallen out before in church, but I almost did one time…because the power of God got really strong and I just couldn't help but cry…it feels like a warmth. It feels … it feels different from what you normally feel.
Maurice (ID) identified preaching as one of his most important spiritual expressions. Not having a place to preach at his church, Maurice found his pulpit in his own living room, “I am a preacher. I preach at home … preach right there by the fireplace … preach about sin, love, kindness, and forgiveness, and baptism, and all that kind of stuff.”
Importance of Faith and Spirituality
We also identified an array of themes reflecting the importance of spirituality and faith in the lives of these young people, including personal affirmation, journey of faith, going deeper, family commitment, and personal benefits. These themes capture how or why the previous spiritual expressions are important to the participants.
Although faith appeared to be a relevant part of all of these young people's lives, seven participants personally affirmed their commitment to participate and the importance of spirituality and faith in their lives. Several youth simply answered “yes” when asked whether it was important for them to go to church; others emphasized the importance of their faith while talking about themselves. For example, when asked about himself and what is important to him, James (ASD) answered, “I am a Christian myself. I go to church every Sunday. So, that's what I do …. I believe that first and foremost, God is the most important thing in my life.”
Journey of faith
Not unexpected, faith was not always viewed in a static way. One participant described his journey of faith and how his view of spirituality has changed over time. Ethan (ASD) talked about how he had not genuinely cared about his faith until recently:
I don't have a particular moment in my life that I can tell you that I've just been on fire for God. But Sundays and Wednesdays I've been on fire for God, and Monday, Tuesday, Thursday and Saturday I'm just living like hell. Now that I—I don't want to blame it on the church ’cause it's not the church's fault. It's my fault that I don't stand up and say, “Hey, I'm done with this. I don't want to do it no more.” Like I said I've lived almost 18 years of just nothing but hell and hypocrisy. And now I've been a Christian my whole life, probably a fake Christian my whole life. Now, I'm just now getting in it, I'm just now living right.
Ethan (ASD) further explained how his journey of faith changed course when he began attending a new church:
I actually recently changed churches. I went to Bedford Church, Bedford Center, and I haven't excluded my membership from there just yet, but I started going to Community Church … You know from the first moment I gave tithes and everything, man I can feel it. Instead of almost twenty years of Bedford, feeling like an obligation to go to church, and anybody who's grown up in church, boy or girl, woman or man, you feel that obligation that your parents say, “Hey son, hey daughter, it's time to go to church.”
Two participants emphasized their desire to go deeper in their faith and grow spiritually. They underscored this desire as an important motivation for them to be involved in their faith community. For example, when asked how was being part of a congregation important in her life, Lisa (ASD) said “It's important to learn to know more about God and to be closer to Him and go on the journey to be more like Him.” Similarly, Joseph (ASD) responded to the same question by saying, “I think it inspires me to be the best person I can be, of course. I want to learn more about God. And I want to use it to … actually come out different than when I came.”
Four participants identified their family's faith commitment as an influential factor for why they participate in a community of faith. All of the participants said their families were committed to their congregation and would bring them to congregational activities. For example, Cathy (ASD) talked about going to church on Sunday mornings with her family, “I see my dad there because he takes me like all of us go on Sunday mornings. It's not an option that my family not goes to church.” Maurice (ID) also explained how he started to go to his congregation, “When I was little, my Nana, she would read Bible stories to me and stuff…and then Nana would always take me to church. And we started going to Fellowship Church.”
Addressed by 15 young people, the most prominent theme in these discussions was the ways in which their faith or faith community was beneficial to them. Six subthemes emerged that describe how their faith or faith community was beneficial. Many youth discussed how their faith community has been a positive influence in their lives as they find it to be (a) a place of belonging and (b) where people are good to them. In addition, a number of youth also discussed how their faith has been a source of (c) help, (d) friendship and love, (e) healing, and (f) protection.
Place of belonging
Six participants described their faith community as a place of belonging. They enjoyed going to their congregation because they felt welcomed and understood there. For example, Cathy (ASD) explained how her congregation understood her, “[My church is] very understanding, and I'll do certain things, like I'll be OCD or something and they are very understanding.” Ethan (ASD) also talked about how his church accepted him, “They don't treat me no different, treat me like everybody else.” Luke (ASD) spoke about his faith community as a place where he can trust others, “Well you can talk to anyone basically like … all the people that are like nice and friendly. You can trust literally everyone there.” Joseph (ASD) also described his faith community as a place where he can feel free to grow. “It's not … you're not forced to do one thing or another. You can just … you can go on your own time, you can go at your pace …. There are not certain rules that are limiting.”
People are good to me
Six participants also described their faith community as a place where people treated them with kindness. While this did not always indicate the presence of actual friendships, it did reflect a culture of “friendliness” in the community. For example, Maurice (ID) described his church, “It was a good church. People good to me. My youth group's good … they love me and they cheer me up.” Spencer (ASD) also described his current faith community as more friendly than his previous one, “Yeah people are nicer to me, and they're taking more time to get to know me. Just feel like I have better friendships there than … because it's like a smaller group of people I guess.”
Source of help
Moving beyond the particular benefits of being part of a faith community, seven participants identified God as a source of help whenever they are in need, including financially, academically, physically, emotionally, and relationally. Many participants gave examples of how God helped them in specific ways. For example, Cathy (ASD) talked about how God provided her a teacher with experience with students with special needs. James described how God helped him to go to a Christian school and make good grades. Mike (ID) mentioned that God helped him to relax when he felt anxious. Tyler (ASD) talked about how God gave him wisdom in relationships. Similar to other participants, Cathy (ASD) elaborated on how she saw all of the help she received as coming directly from God:
I was praying for help so I will be able to go to college or to live by myself and … a new laptop. They're just material things, but I'm saving up money and everything, and then it just happened to be given to me. A laptop … okay … that's not as big but I was like, thank you, thank you, thank you! When he … when I got my car, I was like I would have never been able to do that on my own. I would have gotten a car, but I would not be able to pay for them. So it seems really material, but that's just one of the biggest ways … [God] more direct than indirect [answered].
Source of friendship and love
Two participants spoke about God as a friend. When asked what was his biggest need from God, Tyler (ASD) responded, “Friendship … I like friendship with God because God's cool.” Similarly, Mike (ID) viewed himself as one of God's “friends.” Joseph (ASD) emphasized the importance of being loved by God, “I think my biggest need is of course to be loved, to know that … to know that He knows that I care about him. I want to—to be loved by Him of course.”
Source of healing
Two youth identified God as a source of healing. However, they did not mention healing related to their disabilities, but rather from ordinary sickness or physical pain they or others experienced. James (ASD) talked about how he prayed for healing whenever he was sick; he also described laying hands on other people and asking for healing. Maurice's (ID) comment reflects how the experience of healing can strengthen one's faith in God:
Well, when I was … well see, when I was a baby, not a baby but, when I was little, my Nana, she would … pray with me at the hospital, because the doctor said I wouldn't be able to live, hold my head up, talk, all that kind of stuff. But I did, I did live. I was a miracle.
Source of protection
Two participants described God as a source of protection for them especially when they were in dangerous situations. For example, Amy (ID) indicated God would save her if people came to steal from her or kidnap her, whereas Tyler (ASD) described how he felt God watching over all people with guardian angels.
Views of Self
We asked participants how they viewed themselves and their disability within the context of their faith. Many participants described being known and understood by God. Others addressed how they have come to a place of acceptance regarding their disability. Indeed, several youth viewed their disability as their strength or a gift to be used. A smaller number of youth, however, saw their disability as a condition to be healed or relieved.
Known and understood
Eight youth described a sense of being known and understood by God. They talked about how they knew God understood them by seeing God meeting their needs. Cathy described how God answered her challenges in class by giving her a teacher with understanding and experience. Amanda (ASD) discussed how God brought her to a good school, “He knows. I will tell you He sent me here this year because I transferred from another school last year, because He knew my dream about college, and what I want to do when I grow up. And that's why He sent me here.” Additionally, Ethan (ASD) talked about how God is both aware of and understanding of his mistakes, “But honestly with me He probably … if He could see color, He would see the mistakes I make, He would say, ‘Man you know, that's just Ethan. He does these things.’ ”
Beyond being known and understood, eight participants described how they have been accepted by God. Among them, a number of youth also addressed specifically how they view their disability as part of who God made them to be. Three participants identified themselves as being accepted and valued. They used positive descriptions of themselves such as I'm “a great person” or “[God's] dear child.” For example, when asked how God saw him, Mike (ID) said, “Well, I'm one of His friends.”
Six participants also discussed how they view their disability as part of their identity and as accepted by God. Many of the youth view their disability as part of God's design, and a couple of the youth also emphasized the aspect of equality with others regardless of their disability. Five youth identified their disability as intended by God to be part of who they are. Several youth emphasized their belief that their disability serves a greater purpose. For example, Cathy (ASD) described how her disabilities are there for a reason, “They've helped me, they've hindered me, but overall they taught me a lesson. And it's made me who I am. He made people the way they are for a reason.” Lisa (ASD) echoed what others also shared— that God sees her disability as part of her identity:
I think that He thinks it's … he put Asperger's in my life for a reason and I am wonderfully and perfectly made. And it was His choice. That I should understand it's a part of me and I can't do anything about it, but all I have to do is … if I need help, ask Him.
A couple of the participants suggested their disability was not something that made them different from everyone else. Tyler (ASD) discussed how his disability made him just as unusual as any other person. Ethan (ASD) talked about how God does not excuse him from any of his mistakes because of his disability, “He doesn't excuse me from it, just sees me as everyone else, it doesn't excuse me just like the other person have severe autism or other person has schizophrenia, doesn't excuse them from what they do. Now the court system, they may think different. But God, no.”
To be used
Four participants identified their disability as something they can use for their benefit. In other words, they did not see their disability as a weakness but a strength. Indeed, a couple of the participants described their disability or themselves as “a gift” from God. For example, Amanda said (ASD), “I think it's … He gave it to me, it's like a gift …. And like when I learned about it, that made me totally want to show my [autism] … show it through action.”
To be healed
Conversely, only two participants described how they viewed their disability as something they wished to be relieved of or healed. James (ASD) talked about his desire to be healed from autism and his pain of being different from his peers, “I want God to heal me of this autism so I can be like the normal children. ’Cause sometimes it hurts seeing the normal … sometimes it hurts seeing the normal children not on an autism spectrum and me on an autism spectrum so I want … I want God to heal me so I can do better in math.” Shawn (ASD) also voiced his conflicting thoughts regarding his autism:
I want to know what it feels like to not have autism. I wish I—I want to figure out, I want to be able to see how I would be if I didn't have the … if I didn't have Asperger's. I'm pretty sure, I'll probably continue to choose to stay with the Asperger's because it gives me probably knowledge of little importance, but I crave knowledge.
The professional literature is replete with studies exploring the educational, vocational, residential, and/or social dimensions of the lives of youth and young adults with IDD. Indeed, understanding how best to support these young people to live well during and after high school has been a longstanding focus of research addressing the transition to adulthood. Yet, surprisingly little scholarship has focused on understanding the spiritual dimensions of these young people's lives and the ways in which these dimensions might contribute to flourishing (Carter et al., 2012). Our conversations with 20 youth and young adults with IDD extend this area of the literature in several important ways.
First, participants in this study spoke vividly about the importance of faith in their lives. Almost all of the youth said they engaged in the practice of prayer; half addressed the ways in which they expressed their faith through particular beliefs, actions, congregational activities, and social connections; and three quarters shared some of the ways their faith had a positive impact on their lives. Collectively, these data indicate many youth had a vibrant and personally satisfying spiritual life. These findings reinforce the importance of calls both within professional (Carter, 2013; TASH, 2010) and religious (e.g., Mission To North America Presbyterian Church In America, 2009; National Council of Churches, 1998; United States Conference for Catholic Bishops, 1998) circles to ensure opportunities and supports exist for people with IDD to express their faith in meaningful ways. National surveys focused on adults with and without significant disabilities reveal no differences in the importance of faith based on the presence of a disability (National Organization on Disability, 2004). Our findings affirm that young people with IDD may also place high importance on this aspect of their lives. Although it should not be assumed that faith is universally important to people with IDD, neither should it be assumed to be irrelevant. In fact, our study further highlights the importance of talking to young people about what matters to them in their lives and striving to support those things well.
Our findings further suggest that faith may be expressed and valued in ways that are more similar than different among people with and without IDD. Many aspects of the religious lives of young people with IDD in our study reflect those identified in studies of adolescents more broadly (Bridges & Moore, 2002; Smith & Denton, 2005). Although some expressions appeared more typical (e.g., prayer, rites of passage, attendance at worship services), other expressions appeared fairly unique (e.g., preaching at home, certain spiritual encounters, participation in disability-focused ministries). Consistent with studies involving adults with IDD (cf., Müller, Schuler, & Yates, 2008; Turner et al., 2004), some of the spiritual expressions we heard about took place in private contexts and outside the walls of a particular congregation. However, when provided opportunities, expressions within a faith community also held considerable importance.
Second, we found prayer to be the most prominent spiritual expression discussed by participants in our study. Indeed, all but one of the young people spoke about prayer as a central spiritual activity and an important aspect of their faith. This finding echoes those of studies identifying prayer as a prominent spiritual practice and source of support for families of children with disabilities (e.g., Haworth, Hill, & Glidden, 1996; Poston & Turnbull, 2004; Vogel & Reiter, 2003). It also emerges in many other studies focused on the spiritual lives of adults with disabilities. Yet, scholarship addressing the practice of prayer has either explicitly excluded or inadvertently overlooked this population (Ladd & Spilka, 2013). Additional research is needed to explore more in depth the place of prayer in the lives of young people with IDD.
Third, these youth described a variety of ways in which their faith and congregational connections positively impacted their lives. Myriad studies have explored the contributions of faith to well-being in the general population (e.g., Koenig et al., 2012; Smith et al., 2003). And a growing number of studies have highlighted the positive role faith can play in families impacted by disability (e.g., Dunst, Hamby, Trivette, Raab, & Bruder, 2000; Marshall et al., 2003; Poston & Turnbull, 2004; Treloar, 2002; Vogel & Reiter, 2003). Faith also contributes to a sense of connection and thriving among young people with IDD. Young people addressed how faith helped them to navigate difficult circumstances and provided critical supports at key times. Their relationships with God and with people in their faith community were important to them and a source of their flourishing in life. Future research is needed to better understand how various aspects of spirituality—expressed both individually and within a community of faith—can be especially salient to these young people during their transition to adulthood, as well as the particular pathways through which faith might contribute to thriving.
Fourth, most youth viewed themselves and their disabilities positively in the context of their faith. Indeed, many individuals we interviewed expressed affirmation and acceptance of disability as a core part of their identity. Although a number of youth talked about the purpose disability served in their lives and the benefits it brought, only one youth specifically mentioned wishing to be healed from his autism. Religious beliefs can clearly shape views of disability and disability can clearly shape religious beliefs (e.g., Boswell, Knight, Hamer, & McChesney, 2001; Marshall et al., 2003; Poston & Turnbull, 2004; Templeton & Eccles, 2006). Some young people in this study spoke of seeing design in their disability; others spoke of their disability as a gift to be shared; and most considered themselves to be loved, valued, and understood by God. Although our study was not designed to gauge how widespread these particular views are among people with IDD, these opinions do offer another perspective, contrary to prevailing societal and professional views that disability is something that needs to be fixed, solved, or changed (Baglieri, Valle, Connor, & Gallagher, 2011).
Implications for Practice
Findings from this qualitative inquiry suggest several implications for practice. First, the considerable diversity in the importance and expressions of spirituality within our sample highlight the importance of finding out what matters most to young people. Unfortunately, most existing assessments overlook altogether this dimension of the lives of people with IDD (e.g., Walker, Kortering, Fowler, Rowe, & Bethune, 2013) or only touch on it by asking about a very narrow set of expressions (e.g., attendance at a faith community, involvement in religious activities; Bradley & Moseley, 2007; Thompson et al., 2004). Recent calls have been made to develop tools and processes that can help discern whether and how spiritual supports and connections might be established for individuals with IDD (Carter, 2013; Gaventa, 2006). For example, within person-centered transition planning, young people with disabilities might be encouraged to speak to (a) the beliefs and values that shape their decisions, (b) the types of community involvement they desire (including faith community involvement), and (c) the supports (e.g., personal, spiritual, instrumental) that hold particular importance in their lives. Within adult service systems, support staff should receive training on how to support people with disabilities in ways that neither abrogate nor overlook religious freedom. For example, the New York State Office for People with Developmental Disabilities (2011) developed a set of practical tools aimed at equipping staff to identify valued personal outcomes related to spirituality, assess supports needs related to these outcomes, and design individualized support plans.
Second, the roles of faith communities in supporting the spiritual formation and expressions of young people with IDD are especially important to consider. Apart from personal prayer, most of the spiritual expressions of young people in this study occurred within the context of congregational life. Continued efforts to equip faith communities with the vision, commitment, and capacity to support these young people and their families to participate fully in congregational life are sorely needed. Strengthening the quality of training provided within seminaries to future clergy represents one avenue for equipping ministry leaders (Annandale & Carter, 2014. Developing practical guides to implementing inclusive programming within religious education, youth programs, worship services, and other congregational activities offers another important avenue for preparing lay leaders to welcome people with IDD well.
Third, an essential element of supporting inclusion in faith communities involves fostering friendships and other supportive relationships. Descriptive studies addressing the social lives of youth and young adults with IDD consistently highlight the paucity of lasting friendships (Wagner, Cadwallader, Garza, & Cameto, 2004; Webster & Carter, 2007). Efforts to increase architectural and attitudinal accessibility—while necessary—are usually insufficient for promoting the development of personal relationships between young people with IDD and other members of a congregation. Although most participants in this study were connected to at least some congregational activities, they did not all feel strong connections to others within these activities. Intentional planning and thoughtful supports are likely needed to create contexts in which people with and without IDD are likely to meet, spend time together, and develop new relationships (Carter, Bottema-Beutel, & Brock, 2014). Such supports may be especially important within religious education classes, youth programming, and social-related activities in which people with disabilities participate on the peripheries or miss out on altogether (Connor, 2012).
Fourth, faith community leaders might reflect on some of the key themes articulated by youth and young adults in this study: (a) that the presence of a disability is a poor predictor of the prominence of faith in the lives of young people; (b) that young people do not generally view their disabilities as an issue to be solved, prayed over, or healed; and (c) that many young people with IDD have a faith worth sharing and supporting within the life of a community. Fifth, most of the young people in our study lived with family members, as is true for most adults with IDD. Thus, efforts to equip these families to support the spiritual formation and congregational involvement of their children within and beyond their faith communities can be instrumental in helping youth flourish in this area.
Limitations and Future Research
Several limitations of this study suggest avenues for future research. First, our study was limited to a single region of the country and the religious, ethnic, and cultural makeup of this context. Although 11 denominations were represented within our sample, additional efforts are needed to explore whether and how similar perspectives arise among individuals from different backgrounds. Moreover, it may be that certain spiritual expressions and beliefs are shaped by a host of factors, including religious affiliation, culture, age, and disability. Future studies are needed to explore how such factors influence faith development. Second, we focused on the experiences of transition-age youth and young adults and cannot speak to the place of faith in the lives of younger children or older adults. Much has been written about the course of faith development in the general population and efforts to extend this work to children and adults with disabilities are sorely needed. It has been anecdotally noted that supports within faith communities appear to drop off precipitously during and after adolescence (e.g., Jacober, 2010). Thus, exploration of how best to support the continued presence, participation, and contributions of adults within faith communities is an enduring need.
Third, individuals whose support needs are more intensive and communication challenges more complex may be most prone to having their spiritual preferences and needs overlooked. These young people were not part of the interview phase of our project and so we cannot speak to their experiences and views in this aspect of their lives. It may be that young people with severe disabilities engage in other spiritual expressions not reflected in these interviews. Creative approaches are needed to discern the perspectives and practices of individuals who cannot speak, but still have something important to say about this area of their lives. Direct observations, prolonged engagement, and conversations with others intimately involved in their lives all represent possible pathways for understanding more clearly this dimension of their lives.
Fourth, our data collection was limited to a single interview with each young person. Although we also conducted interviews with and collected assessments from parents, our findings represent an incomplete portrait of the spiritual lives of these young people. Future research involving more sustained engagement with these young people is needed, as are longitudinal studies that capture faith development over time.
Spirituality among people with DD has long been a neglected area of research. Our findings indicate faith and spirituality can have an important place in the lives of young people with DD. The qualitative interview approach enabled the youth to share their perspectives on faith and disability in their own words and suggests ways for faith communities and families to better support the spiritual lives of youth with IDD.
Support for this research was provided in part by the Martin McCoy-Jespersen Discovery Grant in Positive Psychology.
Eleanor X. Liu, Erik W. Carter, Thomas L. Boehm, Naomi H. Annandale, and Courtney E. Taylor, Vanderbilt University, Nashville, TN USA