This qualitative study explored supportive relationships from the perspective of 5 academically successful individuals with autism. To ensure that data were rich and based on personal experience, participants with autism identified between 2 and 4 people with whom they had a successful supportive relationship. The participants in this study identified and described properties within these relationships. Analysis of in-depth interviews and documents using the constant comparative method revealed 6 properties of the successful supportive relationships: trust, intimacy, the presumption of competence, understanding, shared vision of independence, and good communication. Implications for research and practice are discussed.
From Leo Kanner's first description of autism in 1943, to the present, impairments in social development, interaction, and relationships have been considered pathognomonic to the disorder (e.g., Baron-Cohen, 1995, 2001; Donnellan & Kilman, 1986; Howlin, 1986; Rogers, 2000; Schopler & Mesibov, 1986; Wing & Gould, 1979). The most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; American Psychiatric Association, 2000) described the impairment of social interaction in autism as “gross and sustained” (p. 70) and noted that individuals with autism lack social or emotional reciprocity and do not develop appropriate peer relationships. Moreover, researchers have argued that even if individuals with autism develop relationships, these relationships are atypical (Konging & Magill-Evans, 2001; Marks, Schrader, Longaker, & Levin, 2000) or rudimentary at best (Volkmar, 1987).
Because impaired social functioning is a defining characteristic of autism, researchers have rarely studied personal relationships in the lives of individuals with the autism label, and, therefore, almost nothing is known about the ways those relationships provide support and growth opportunities for these individuals. Recently, a few empirical studies have suggested that the quality of the relationship between the individual with a disability, including individuals with the autism label, and the people who support them may well be a critical element for successful intervention, treatment, and education (Bambara, Gomez, Koger, Lohrmann-O'Rourke, & Xin, 2001; Kliewer & Biklen, 2001). In addition, many individuals with autism have reported, both in published first-hand accounts and at professional conferences, that they have developed and benefited from successful supportive relationships with parents, siblings, friends, teachers, and paid support staff (e.g., Grandin & Scariano, 1986; McDonnell, 1993). These relationships, and their properties, are the subject of this article.
The role of supportive relationships in human development is well known (Fogel, 1993). The beneficial effects of supportive relationships include good mental and physical health (Heller & Rook, 1997; Uchino, Cacioppo, & Kiecolt-Glaser, 1996; Wethington & Kessler, 1986), competent immune functions (Jemmott & Magliore, 1988), lower exposure to stress and depression (House, 1987; Sarason, Sarason, & Gurung, 1997), and lower mortality rates (Blazer, 1982). Negative consequences associated with a lack of supportive relationships include suspiciousness and distrust of others (Perlman & Peplau, 1981), diminished ability to cope with crisis and stress (Rubenstein & Shaver, 1980; Sherbourne, Meredith, Rogers, & Ware, 1992), depression (Hagerty & Williams, 1999), and lower communicative competence (Spitzberg & Cupach, 1985).
The purpose of this study was to explore and describe properties of supportive relationships identified by individuals with autism. These data are part of a larger data set (see Robledo, 2006) that explored supportive relationships from the perspective of both members of the dyad. Here, we focus specifically on the perspective of the individual with autism, as this important perspective is notably absent from research on personal relationships and autism.
This study was guided by the presumption-of-competence and optimistic research. The presumption-of-competence orientation (Biklen, 1999, 2005; Cardinal & Biklen, 1997) views participants with the autism label as participants in research, not as objects of research. Participants are seen as competent individuals who are capable of forming and sharing insights about their lives and relationships. The literature on sensory and movement differences (Donnellan & Leary, 1995; Donnellan, Leary, & Robledo, 2006; Leary & Hill, 1996; Nayate, Bradshaw, & Rinehart, 2005) has suggested that many individuals with autism have their competencies masked or compromised by sensory and movement differences. The presumption-of-competence orientation encourages researchers to look for competence instead of incompetence. In addition, we designed this study as an example of what Bogdan and Taylor (1990) described as optimistic research, which focuses on highlighting positive examples with a view toward change. Bogdan and Taylor suggested that using an optimistic approach makes the research both more relevant to those who are studied and substantially more useful to those in the field.
Using the optimistic-research approach, successful individuals with autism were the focus of this study. For present purposes, success was defined in terms of academic success. We sought participants with autism who had been accepted into or had experience in postsecondary education, including college, community college, or technical school. The demands of higher education are intense, especially for individuals with challenges in social interaction, communication, and behavior. We assumed that these individuals had formed successful supportive relationships that enabled them to achieve their academic success. Through exploration of their experiences, we hoped to better understand the properties of their successful supportive relationships.
Purposeful sampling was used to select specific individuals with autism who met the criteria of the study: (a) a diagnosis of autism by a medical, psychological, or educational agency not connected to the researchers using one of several versions of the DSM (III [American Psychiatric Association, 1980], IV [American Psychiatric Association, 1994], or IV-TR [American Psychiatric Association, 2000]) or state and/or federal guidelines under the Individuals With Disabilities Education Act and (b) entrance into and experience in postsecondary education, either at a university, community college, or technical school.
In addition to these criteria, we sought people with autism who were articulate about their experiences. All participants had developed a conventional way to communicate, either through speech, typing, writing, or a combination of techniques. We did not exclude people with autism who used facilitated communication, even though the technique has been controversial since the early 1990s. With one exception, noted below, we applied Biklen's (2005) “independent typing-or-speaking criterion” for including individuals who used facilitated communication. The participants chosen for this study include “individuals who can type without physical support or who can speak the words they type, before and as they type them and after they have typed them” (Biklen, 2005, p. 9). Beukelman and Mirenda (1998) stated that for independent facilitated communication users, “There can be no doubt that for them, FC ‘worked,’ in that it opened the door to communication for the first time. … For them, the controversy has ended” (p. 327).
Three of the 5 participants in this study used facilitated communication as their primary means of communication. One participant was able to type only when a facilitator was touching his elbow or shoulder. This participant read his typing aloud while he typed and read the message back after he typed. The 2nd participant was considered an independent typist. Although she did not require any physical touch, she did require a supporter to hold the typing device while she typed. The 3rd person required hand-over-hand support to type and was the only exception to the independent typing-or-speaking criterion. We did not use any specific tests to validate her typing. Instead, we relied on her history of typing information unknown to the facilitator and her successful postsecondary education as validation. In addition, we documented examples throughout data collection where she clearly showed authorship of her own typing (e.g., recalling past events of which the facilitator and researchers were unaware).
Inclusion was based on willingness and availability to participate. All participants provided informed consent prior to the study. Four of the 5 participants with autism were approached about the study at professional conferences. The second author referred the final participant.
To ensure that data were rich and based on personal experiences, participants with autism were asked to identify between two and four individuals with whom they had a supportive relationship. As we did not want to dictate who fit this category, participants were asked to define supportive relationships for themselves. The only criterion for selection was that the person with autism had known the individual for more than 6 months. Participants with autism identified 17 supportive relationships to be discussed during interviews. Of these supporters, 15 were female and 2 were male (a father and stepfather). Seven were relatives, all parents or stepparents. The other 10 supporters had at one time or another been paid support staff. The ages of the supporters ranged from early 20s to mid 60s, and all but 2 were White. Informed consent was obtained from all participants, including supporters. The perspective of the supporters was obtained and will be presented in a future report. In general, their comments were congruent with the findings presented herein.
Although we had planned to use pseudonyms, all the participants (and supporters) requested that we use his or her real name. Many participants indicated that they felt their participation in this study was a form of advocacy. Therefore, we use the real first names of each participant.
Sue is a 28-year-old White female. She is part of a middle class family in southern California and is now a junior in college. Until the age of 13, Sue had no reliable means of communication and was diagnosed as autistic and severely retarded, with a tested IQ of 29. At Age 13, Sue began to communicate through facilitated communication and since then has been included within general education. Sue is an active advocate and published author. She has been featured in a variety of public broadcasting documentaries and was also featured in and wrote the Academy Award–nominated CNN documentary Autism Is a World (Wurzburg, 2004). Sue has coauthored a journal article and published opinion editorials and book chapters. She frequently presents at national conferences and serves as an expert witness in court.
Peyton is a 32-year-old White female who is part of a middle class family in southern California. Peyton was labeled autistic and severely retarded in childhood and was educated in both segregated and inclusive environments. At Age 22, she began communicating through facilitated communication. In 2002, Peyton graduated as valedictorian with an associate of arts degree in general studies and a 4.0 overall grade point average. Peyton is also an advocate and presents at national conferences. She has published an article and was featured in the documentary Helium Hearts (Goddard, 2003).
Tyler is a 20-year-old White male from a middle class background in northern California. Tyler began communicating through facilitated communication at the age of 6. Tyler has also been included within general education and is currently a freshman in community college. He is an advocate and frequently presents at national conferences.
Stephen is a 27-year-old White male. Stephen moved frequently when he was very young but has been in southern California for most of his life. He has a middle class background. At the time of the study, he was an undergraduate at a large university from which he has recently graduated. Currently, he is a technology support specialist at a charter high school. He frequently presents at national conferences and travels independently.
Matthew is a 27-year-old White male. He is a member of a middle class family in Wisconsin and has been included in general education since high school. Matthew recently graduated from a large state university with a degree in mathematics. He also presents at national conferences. Currently, he is looking for a job that will value and use his skills in mathematics.
Interviewing allowed us to seek each person's unique perspective and experience. A semistructured interview guide was used in all initial interviews. This guide focused on three major areas: description of each relationship, ways in which the relationship was supportive, and the role of communication in the supportive relationship. As the interviews progressed, these guides evolved and expanded according to concepts that emerged during earlier interviews (Charmaz, 2001; Strauss, 1987). Table 1 shows the type, number, and length of interviews with each participant with autism. All interviews were audiorecorded and transcribed verbatim. Observation field notes were written immediately after each interview. In addition, all face-to-face interviews were video recorded to expand the observation field notes.
Documents and other materials
Documents and other materials were collected from participants and used as data (see Table 1). These included published articles or chapters, documentaries or other video recordings, conference presentation handouts and/ or transcripts, schoolwork, and other miscellaneous documents. All documents and other materials were written by or about the participant with autism. Notes and memos were developed about each of these materials. Documentaries and other recordings were also transcribed for coding purposes. A researcher journal was kept throughout the data collection and analysis process and included analytical, methodological, and personal notes.
We were able to directly observe 9 of the 17 dyads. Observation periods ranged from 1 to 4 hr. These interactions were video recorded. We were able to observe 4 other dyads through prerecorded videos or documentaries. Field notes were written up after each observation. Four dyads were historical and thus unavailable for observation during this study. Two of these had been observed by the second author in the past.
Lincoln and Guba (1985) stated that multiple sources and methods, often called triangulation, improve the credibility, validity, and trustworthiness of the research findings. Each source of data provided a unique glimpse into these complex relationships. Interviews allowed participants to discuss their personal experiences and perspectives of the relationship in great detail. Some participants found it hard to verbalize what their relationship was really like, saying, “You have to see us together to understand.” Therefore, we observed as many dyads as possible. These observations clarified things that were said in interviews and, in addition, allowed us to witness the connection between the members of the dyad, as well as to observe everyday examples of support. Video recordings, which had been made prior to the study, allowed us to observe interactions between participants who no longer worked together. Video recordings made during data collection allowed us to observe interactions between dyads in greater detail. Documents and other materials provided additional insights into the lives of these participants and their attitudes and perspectives.
Data were analyzed throughout the data collection process using the constant comparative method (Glaser & Strauss, 1967). Data were coded in two steps. First, initial or opening coding consisted of line-by-line coding. Second, selective or focused coding consisted of applying broader codes to larger pieces of data. Broader codes were then compared using the constant comparative method. Codes were put into categories through comparison of similarities and differences.
Coding video transcripts, field notes, and memos
Memos were written about each document, video recording, or other material provided by participants. In addition, all video recordings and documentaries were transcribed. Memos and transcripts were coded and analyzed in the same manner as interviews.
Throughout the data collection and analysis process, we checked back with participants as needed to fill in gaps and further discuss emerging concepts and theories (Glaser, 1976; Glaser & Strauss, 1967). Theoretical sampling ensured that the participants continued to play a role in the analysis of data. This also helped us revise, expand, and validate interpretations and findings.
Trustworthiness is critical for confidence in both the methodology and the findings of qualitative research. In this study, we followed Wolcott's (1990) recommended nine points to strengthen trustworthiness: (a) talk little, listen a lot (interviewees were encouraged to lead discussion); (b) record accurately (efficient systems of data collection and analysis were put in place); (c) begin writing early (memo writing occurred throughout data collection and analysis); (d) let readers “see” for themselves (theoretical sampling); (e) report fully (multiple methods of data collection techniques and sources of data); (f) be candid (researcher journal allowed us to examine our subjectivity); (g) seek feedback (peer debriefing and member checks); (h) try to achieve balance (data analysis took place during data collection); and (i) write accurately (vignettes and quotes from participants were included). In addition, two professionals who were considered experts in the field of autism separately reviewed the codes and verified the findings.
The purpose of this research was to explore and describe the properties of successful supportive relationships from the perspective of individuals with autism. Six essential properties emerged from the data.
Participants identified trust as an important property of their supportive relationships; many described trust as foundational. As Matthew stated, “The one thing I need in a supportive relationship is to know that I can trust the person who is supporting me.” In her interviews, Peyton spent considerable time discussing the importance of trust. She explained that trust could only be developed and maintained when both members of the relationship “cared for the advances or growth of the other person.” Trust blossoms when the relationship or “union” is in the best interest of the person in need of support at any point in time, which could be either member. Each act that supported that individual to grow made the trust between the two individuals stronger. For Peyton, trust was either “established or shattered” according to how “unified” the two members were in response to situations where support was required for either person. If either member of the relationship was viewed or treated as “gullible” or as a “nonthinker,” trust could not be developed or maintained.
Participants described the process of developing trust with supporters. For Tyler, trust was not something that people had to prove through actions; instead, it was something he “knows and feels” in his heart. He described being able to establish trusting relationships with people by knowing that they are “caring” and always have his “best interests in mind.” “It takes time and energy,” said Tyler. “I need to see that person's heart. I want to know if they are a loving soul.”
Asked how he knows he can trust someone, Stephen said, “It's hard to determine an answer; it's the feelings I have regarding the other person. Sometimes it's people who really believe in me, sometimes there are mismatches and you don't always end up with the right people.”
As the more vulnerable member of the dyad, Sue recognized that she had more at risk in the relationship. She explained, “Trust is absolutely very important because the really awesome people around me facilitate my life. They are the ones that are responsible for my daily assistance. I'm taking a chance that they are responsible enough to actually run my life.”
For Sue, trust was established when her supporters proved their trustworthiness through actions. “I can't trust them until I know how they will treat me when they are mad.” Sue explained that she devised ways to test their trustworthiness. These tests were usually specific to whatever upset or most bothered the person. For example, one past supporter seemed flustered when Sue exhibited self-injurious behavior or other dangerous behaviors in public, so she purposefully acted in this way to determine how her supporter would react. For Sue to develop trust, it was critical that she could count on getting the support she required during the worst of situations.
Participants also indicated that violations of trust by one supporter had a negative impact on their ability to trust future supporters. Two of the 5 participants spoke of past violations that had deeply affected their willingness to trust new people in their lives. Tyler also tested new supporters. His method was to purposefully hold back from communicating to determine if “they deserved my trust.” Tyler was aware that withholding communication had a negative effect on his life. “I am trying to move past my need to test supporters,” he explained, “but fear is blocking my success right now.”
Transitions to new supporters are a serious challenge. Tyler described how changes in supporters “scare the hell” out of him and he “prays like hell” that it will soon be over. Sue's documentary, Autism Is a World (Wurzburg, 2004), captured the transition of two supporters leaving as paid staff. Although they are still Sue's friends, the transition was devastating for her. The documentary gave witness to her intense emotional struggle with their leaving. During the film, Sue typed to one supporter that she did not want her life to “be in a hell because she [the supporter] was leaving.” She further explained, “It is extremely hard to not want to really be happy for the staff who is moving forward with their life, but they are such important assets to me. One of the incredible things that happens is seeing which ones still are really friends.”
Trust is a critical issue for these individuals with autism. Although trust may develop differently for individuals, it is clear that the maintenance of trust is a critical property of their successful supportive relationships.
It seems self-evident that participants would identify having a close relationship with their supporters as a property of their supportive relationships. Yet, the mere existence of a proximate relationship between the person with autism and the supporter was not the determining factor of successful support. Instead, it was the quality of that relationship. Participants described the existence of a bond, an intimate connection that informed successful supportive relationships. Each participant defined this connection in different ways.
For Peyton, an intimate connection occurred when both people in the dyad “reassert each other's values in harmony.” The connection between herself and her supporters, she explained, needed to involve “intimacy, common interest, and action.”
Other participants agreed that having mutual, unified, and close relationships with their supporters was an important piece of their support. As Stephen said,
I think it is key to good support. They need to get to know the individual and know that it is a relationship. That relationship needs to be productive and comfortable. They do need to be qualified and know what they are doing, but the relationship is even more important. Being comfortable with the support you are receiving is important. I don't care about the politics. If that relationship is not comfortable and productive, in some cases you might be hurting instead of helping.
Tyler described how relationships built on “unconditional love and respect” grounded him so that he could be supported successfully: “I need that foundation so I can focus on my communication.” In addition, Tyler said he needed to feel a spiritual connection with his supporters. In one relationship, it forms the cornerstone of his support. Tyler explained, “We share common spiritual views and that makes us extra close. We know that there is a higher power with a plan for us together. We let that guide our work together. We share some spiritual gifts and communicate without words. We have a mission together in this lifetime.”
Participants also indicated that intimacy grew when it was based on mutual support and reciprocity; when they could offer support to those who supported them. This made their connection deeper. Sue stated that her supporters often came to her for advice because, “I tell it like it is.” She further explained, “Loneliness no longer is part of my life. My support people ask me to spend time with them when they are not working. Mopping up their problems is my specialty. They respect my advice and enjoy being with me” (Rubin et al., 2001, p. 422).
In all, participants stressed that the quality of the relationship was an important property of their successful supportive relationships. They described these relationships as intimate, reciprocal, and mutual. For these individuals, it was within the context of these intimate bonds that support was most effective.
Shared Vision of Independence
According to each participant, the ultimate goal of support for all of the relationships explored in this study was independence. All participants agreed that the goal of independence needed to be a “shared vision” between both members of the dyad. This vision served as both the foundation and driving force behind all support.
Participants described independence as a process. They reported that in many aspects of their lives they would never be totally independent, yet they want ultimately to be as independent as possible. They spoke about their desire to constantly push themselves and be pushed by their supporters towards greater independence. “I want to be as independent as I am able to be,” Sue explained.
Participants reported that they were best supported when they were allowed to first try things independently and have the other step in with support only when it was required. “I want to be good at what I do,” said Tyler, “but I want to achieve it on my own terms.” Being “oversupported” was something that was extremely frustrating and did not contribute to progress toward their goal of independence. When I asked Tyler what his mother did that made her support effective, he said that she let him “make mistakes,” which he felt assisted him in his process toward independence.
In a similar vein, Stephen spoke about the importance of supporters not trying to make him “100% perfect,” because he felt he had learned the most from the times he had failed. “There is a learning experience involved with getting things wrong. If a supporter is so intrusive that the person always gets an ‘A’ because of their assistance—that creates dependence.” Stephen described that sometimes he felt that his life was being controlled by his support team rather than them being “passengers assisting me to be the driver of my own life path.” Stephen continues to believe this is important not only for him but for all individuals with disabilities. A major focus of his advocacy work is dedicated to advocating for individuals to be in control of their life choices. As he said, “Others shouldn't assume what people want to do with their lives.”
Sue also stressed the importance of support aimed at independence:
My staff push me to be able to do things with the least amount of support necessary. They are constantly teaching me that I must rely on myself first and then ask for aid if I am not able to accomplish something on my own. I find that I am happier being tested to see what my strengths and weaknesses actually are. I am not afraid at all to ask for help from my staff and friends because they are truly there for the purpose of aiding me in my times of need. I feel much more independent than I could have ever imagined, and that feeling alone is intensely gratifying. (Rubin, as cited in Biklen, 2005, p. 94)
Overall, participants reported that successful supportive relationships were those in which independence for the person with autism was the mutually held goal of the relationship.
The Presumption of Competence
Participants with autism spoke of the importance of their supporters presuming that they are competent human beings. Although it was very important to them that others knew they were intelligent, they felt it was equally important that others assumed their personhood. Participants shared a common desire to be treated like a regular person— a person with thoughts, emotions, a sense of humor, and a personality. Tyler described how important it was for his supporters to “talk to him like a real person.” Stephen explained, “It really helps me when people believe in my abilities.” Tyler described how his mother always knew that he was competent and capable: “She always knew I was there intellectually.”
Sue described how difficult it was for people in general to see her as competent because of all the competing behaviors that turn people off and take them to incorrect conclusions.
It is extremely difficult to explain to someone that I have normal intelligence though I look as if I am disabled. Many do not understand that my intellectual functioning is far greater than is perceived by looking at me. I have a difficult time communicating with the outside world because other than echolalia and verbal prompting I am very limited in my oral speech. I am a junior in college and have a GPA of 3.67. … Things are not always what they seem. I sometimes feel as if I am the eighth wonder of the world as people stare and marvel at my irregular behaviors, which lead to poor assumptions that I am simply mentally disabled with little or no intellectual functioning. My appearance is very deceptive, and day after day I am working, as an advocate for all autistic individuals, to let the world know that we are intelligent and witty, should not be judged for our quirky behaviors because they are only a minute reflection of our true capabilities. (Rubin, as cited in Biklen, 2005, p. 95)
Sue described how her supporter's confidence in her competencies helps her to overcome the false assumptions she faces in the world.
All participants explained that having their supporters believe in them was the most powerful assistance they could receive. Each participant with autism desired to be seen as a typical person who may need some extra supports and accommodations.
“It is very important that the support [person] understands my intelligence and my autism,” explained Sue. For her, supporters need to find a balance between understanding her skills and also understanding the impact of autism. At the same time, participants also talked about wanting supporters to know them, not just autism. In fact, some participants like Tyler, preferred supporters who knew little about autism. He recalled negative experiences with supporters who never took the time to get to know who he really was because they assumed everyone with autism was the same or fit some description they had read in a book. Because of this, Tyler tried to avoid hiring staff with a background in special education or autism. He preferred to teach them all they need to know about understanding him.
Stephen reported that he gets upset when people assume too much about him without trying to get to know him. Although Stephen liked being labeled high-functioning, he felt that the label caused people to overlook some of his major challenges. He found it hard to convince others that he needed help in certain aspects of his life, especially social skills:
People need to understand that there are people out there that haven't had the same experiences they've had and their set of knowledge is going to be very different and things are going to be new to them. No one taught me how to make friends. People aren't born knowing this. It took me a long time to get people to teach me social skills. In high school, my mom and I arranged for them to teach me social skills—finally! We arranged for me to go to things like football games and prom and homecoming and things like that. I had never really known what to do at those types of things, so I would never really go to any extracurricular things for most of my life. One of the things I want to point out is that I don't want another child to grow up not having any friends or not knowing how to make friends. That is something they literally had to teach me from step one. And it seems very sad, and it is.
Participants with autism desired to be seen beyond their label and the stereotypes associated with this label. They did not was their supporters to understand “a person with autism”; instead, they wanted them to understand and know Sue, Peyton, Tyler, Stephen, and Matthew.
Participants indicated that supporting and understanding their communication was an important property of their successful supportive relationships. Tyler described it as his most “critical need.” He said, “Communication is the foundation to my success.”
Matthew and Stephen were the 2 participants in this study who used speech as their primary form of communication. While interviewing Matthew and Stephen, however, we noticed they struggled to communicate, especially about personal topics such as relationships. Matthew described communication as “very challenging” and indicated that his supporters had to be committed to supporting his communication challenges. For example, he explained that supporters needed to let him know how long a conversation would last and to keep communication to him short, simple, and concise.
For Peyton, Sue, and Tyler, communication required the support of another person. During the interviews, they explained the essential elements required from the supporter for their communication to be successful. First, they identified the importance of their supporters' recognizing and believing in their ability to communicate. Tyler explained that this required supporters to “look beyond my outward appearance and give me a chance to show you that I can communicate.” He also indicated that this required time and energy that many supporters were not willing to provide. However, he felt blessed that individuals in his life were willing to make that effort, even when his communication techniques made him look like a “car wreck.”
The second element of communication support involved supporters seeking out clear and reliable ways for the person with autism to communicate. Although Tyler was able to read out loud everything that he typed, he explained that his spontaneous speech “still sucks” and that it was critical that supporters type with him so that his communication is clear. This was similar to Sue's experience. She stated, “My behavior actually contradicts my thoughts. It really is vital that I communicate.” For Sue, this meant that her supporters must type with her for her communication to be reliable.
The third element of good support for communication was a deep understanding of the person. Sue explained:
I am very fortunate that my friends and family are people who know me very intimately. Many times I feel as if oral communication is over rated. Much of how I express myself is through my eyes. Those close to me are easily able to tell if I am sick, tired, or happy, by just looking at my face. My expressions are not always appropriate yet my eyes are the windows to my soul. (Rubin, as cited in Biklen, 2005, p. 86)
Tyler also reported that the process of communication was easier when someone really knew him: “If they are good supporters they recognize my attempts to communicate with them.” For these participants, support for communication is a critical property of their successful supportive relationships.
All participants identified supportive relationships as a key factor in their success. The relationships that were explored in this study were based on mutual trust, respect, and caring as well as assumptions of competence and a focus on independence and communication. Although participants described supportive relationships in their lives that had all these qualities, they indicated that it was through negative support experiences they realized which properties were essential to a successful supportive relationship. As Matthew stated, “It's hard to say what makes this relationship work. It's easier for me to think about times I didn't get what I needed. It's easier to point something out when you don't have it. When you have it you don't have to think about it.”
Participants indicated that effective support was dependent on the quality of the relationship. These findings are similar to what Bordin (1979, 1983) described as the “working alliance.” Bordin's theory, based on his work in counseling and psychoanalysis, recognizes that effective interventions are wholly dependent on the quality of the bond that partners share. Effective bonds center on mutual feelings of liking, caring, and trust. Techniques and strategies alone are not sufficient. Instead, greater focus should be on building and maintaining relationships. Bordin's theory, as well as the findings of this study, have implications for supporting all individuals with autism. Practitioners and researchers may have overlooked or underestimated the importance of relationships in providing support to individuals with autism and have overemphasized the need for generic techniques and strategies.
An interesting findings was that 15 of the 17 individuals identified as supporters were female. In addition, each participant identified his or her mother as a significant supporter. This gender imbalance is congruent with other research in the feminization of care (Traustadottir, 1991). Although this issue was not probed with participants, it warrants additional research.
Another finding was that all of the supporters were at one time or another paid support. When participants were probed about this, most indicated that they spent much of their time with either relatives or paid staff. Participants indicated that there was a distinct difference between paid staff and friends. Moreover, there was fluidity within the identified supportive relationships. In fact, of the 10 supporters who were nonrelatives, only 1 is still in a paid support position. All other supporters have moved out of their paid position yet continue to have a supportive relationship with the individual with autism. Taylor and Bogdan (1989) also found that some of the closest relationships were between former staff members who remained friends with the labeled individual after leaving their job. The intimacy involved in these jobs most likely aided in the development of close relationships.
The results of this study suggest that there is much more to know about relationships and support in the lives of individuals with autism than is generally understood and acknowledged in the literature. Including the experiences and perspectives of the labeled individual may further this understanding. The -etic perspective, the view of the outsider, dominates the professional literature and diagnostic criteria of autism (Biklen, 2005). Traditionally, this perspective has presented a deficit model to explain the experience of autism. Although it may be fruitful to note the specific limitations–challenges facing individuals with the autism label, stopping at that point in our understanding does not help support these individuals in a personalized way. As a field, we have settled for professional's interpretations of autism, an inadequate substitute for the perspective from these individuals (Donnellan, Leary, & Robledo, 2006). Rarely is the -emic perspective, the experiences and perspective of those who have a lived experience of autism, incorporated.
These findings cause one to question the validity of a deficit model for understanding autism. This deficit model is based on what Gelb (1997) has described as typological thinking: the notion that labeled groups of people are fundamentally different from other groups of people and are more like each other than they are like other groups. Typologists seek out an “underlying essence from which differences purportedly derive” (Gelb, 1997, p. 448) and are less interested in variations among individuals. When an individual deviates from this explanation, they are described as an outlier or rare exception, whose existence has no implications for the use and accuracy of the model.
The major problem with typological thinking is that it restricts our ability to see diversity and individual differences among people who have been lumped into a category according to a shared trait. It must be noted that we are not arguing against the use of categories; instead, we are arguing against their misuse. There is the danger that readers will view the participants in this study, both people with autism and their supporters, as exceptional or atypical and further conclude that this study tells us little about real people with autism. We did seek out academically successful individuals with autism who could articulate their experiences and perspectives, and we did explore positive and supportive relationships. We are not denying that these individuals and their experiences may be exceptional. However, assuming that their experiences have little to teach us about autism and support is to engage in typological thinking that may hinder the field from developing new insights and understandings of the disorder and the labeled population.
There were several limitations to this study. A small sample places some limits on the ability to generalize the findings to other individuals with autism. Likewise, the academically successful selection criteria greatly decreased the population pool from which we could make a selection. In addition, the participants in this study were all individuals who were able to communicate either through verbal language or traditional orthography. Many individuals with autism are very limited in their ability to communicate their thoughts and are not provided appropriate augmentative and alternative communication methods to assist them.
All of the participants with autism were White and middle class. Again, this is a limitation on the ability to generalize the findings to other races, cultures, and socioeconomic levels. This limitation also raises the question of whether their relatively privileged status, in terms of resources and social capital, has been a determining factor in their academic success. This question was not addressed in this study, and it deserves attention in future research.
Facilitated communication posed an additional challenge because interviews required a support person to be present. This meant that interview sessions were not as private as desired. Nonetheless, each participant with autism indicated that he or she felt comfortable discussing these relationships openly with all of the support participants identified for this study.
This study served as a preliminary analysis of supportive relationships, a complex and virtually unexplored topic within autism research. Future research could explore what factors limit or assist the development of these relationships. Does the individual's living arrangement affect access to supportive relationships? What do supportive relationships look like for individuals with autism who are not in the academic stream? For those who are academically successful, what other factors have influenced their success? Possible factors to explore include race, sex, socioeconomic status, educational background of parents, or family status. The questions to explore about the social world of individuals with the autism label are almost limitless. Additional research within the topic of relationships is likely to be beneficial to individuals with autism, practitioners, family members, researchers, planning agencies, and others.
We thank Steve Gelb, Martha Leary, Diane Hatton, Gail Evra, and the reviewers of this manuscript for their contributions.