Exploring the Social Experience of Autistic Adults: Views on Friendships, Dating and Partnerships

Volume 1. No. 5

Exploring the Social Experience of Autistic Adults: Views on Friendships, Dating and Partnerships

 

April 20  2018

By Jenna A. Johnson, M.S.W. & Roy R. Hanes, PhD

 

Abstract:

This article reports on the social and intimate relationships of autistic adults. The results describe both negative and positive experiences, as well as possible insights into how their communities can be more inclusive and provide better social opportunities specific to this population. The methodology for this study includes both quantitative and qualitative data and utilizes participatory action techniques. The purpose of the research is to provide an opportunity for autistic adults to discuss their social experiences and aspirations, as much of the existing research on this topic comes from parents, family members, professionals and service providers, yet rarely from the individuals themselves. This study attempts to address this disparity by focusing on the perspectives of autistic people – by sharing their stories and by including the participants in the research process itself.

 


 

Exploring the Social Experience of Autistic Adults: Views on Friendships, Dating and Partnerships

By Jenna A. Johnson, M.S.W. & Roy R. Hanes, PhD

 

Introduction

Research suggests that young autistic adults, much like their peers without disabilities, possess social and romantic interests. However, unlike their “neurotypical” peers, young autistic adults often face significant personal and societal barriers when it comes to making and maintaining romantic relationships and friendships.  Barriers can range from a lack of opportunities for meeting people to the uncertainties involved with beginning relationships; as well as confusion surrounding the appropriate interpretation of non-verbal social cues (e.g. body language, eye contact and other types of non-verbal communication) (e.g. Kanner, 1943; Celani, Battachi & Arcidiacono, 1999).

While there is clearly a need to understand the social activities, desires and processes of autistic adults, most of the existing research on this topic addresses social skills training for children and youth only. Most mainstream research in this area is also highly medicalized and almost always from an outsider's perspective.

This gap in the research is particularly troubling as we know that there are increasing rates of autism diagnoses among children. Obviously, children diagnosed with autism become autistic adults – and such persons are often interested in making friends, dating and establishing long term relationships (e.g. Sperry & Mesibov, 2005; Henault and Atwood, 2002). However, while desire and interest may be apparent, the reality is that the social and romantic lives of autistic people can be difficult. Autism correlates with serious implications for learning, social integration and overall quality of life (Fombonne, 2003; Matson & Kozlowski, 2011; Hughes, 2009; Newschaffer, Croen, Daniels, Giarelli, Grether, Levy, Mandell…Wyndham, 2007). There is also considerable research indicating a link between diagnoses of autism spectrum disorders and increased rates of social isolation as well as reported feelings of depression and anxiety (Barnhill, 2001; Hutton, Goode, Murphy, Le Couteur & Rutter, 2008; Kim, Szatmari, Bryson, Steriner & Wilson, 2000; White & Roberston-Nay, 2009).

However, simply noting that persons on the autism spectrum experience social challenges does not provide any clear cause and effect relationship; and research on possible neurobiological differences while interesting, do not necessarily help us to better integrate autistic persons into our communities (Neuhaus, Beauchaine & Bernier 2010). In our opinion, the continuous focus on the functioning of the individual alone without consideration for social context only serves to further exclude “neurodiverse” individuals from mainstream society. At the same time, the myth that autistic people are universally socially disinterested and socially impaired is continuously perpetuated – with little regard for the diverse lived realities of autistic people. However it is more than likely that this process of social exclusion directly causes much of the isolation and loneliness experienced by this population. Despite all of this, there is still relatively little research on the social experiences of young autistic adults – and even less with self-reported data -  and that is why this research was carried out: to give a voice to an often isolated and silenced group. The importance of gaining insight into the internal experiences and day-to-day realities of the individual is especially important when we consider that many autistic people have different ways of communicating that are not always heard.

Brief Literature Review

Are Autistic Individuals with More Socially Isolated?       

Evidence suggests that disabled children are more vulnerable to loneliness and social isolation (Luftig, 1988; Margalit & Levin-Alyagon, 1994; Pavri & Luftig, 2000; Williams & Asher, 1992). Locke, Ishijima, Kasri, London (2010) found that children experienced significantly higher levels of loneliness, had lower “friendship quality” and reported fewer companionships when compared to their classmates. Orsmond, Krauss, & Seltzer’s 2004 study of 235 adults and adolescents with autism found similar results; respondents with autism reported low levels of social connectedness although certain individual traits (e.g. better social skills) and environmental differences (e.g. more social/recreational opportunities) seemed to mediate levels of social inclusion (p. 245). Chamberlain (2007) also found that while children involved in a regular education program with other “neurotypical” peers were often considered to be “on the periphery of their classroom social structure”, they tended to at least be associated with one social group (p. 76) – so it seems that social isolation and/or disinterest is not always the norm and may depend on environmental factors as well as individual differences.

Social Functioning Deficits and the Autism Diagnosis

It is well known that social skills and thus the quality of future social interactions develop along a different trajectory for autistic people than their neurotypical counterparts. Social skills and communication deficits have always been central to the diagnosis of autism (Kanner, 1943) and these topics continue to dominate the literature today – with the greatest interest in children in particular.

Recent research affirms the findings outlined by Kanner. Children diagnosed with autism continue to be associated with a multitude of social/behavioural markers, including: less “eye gaze” and joint attention with interactive partners (Baker, Koegel & Koegel, 1998), problems imitating simple motor movements (e.g. “patty cake”) (Stone, Ousely, Littleford 1997), difficulty orienting to social stimuli in general (Dawson, Mentzoff, Osterling, Rinaldo & Brown, 1997), difficulty understanding facial expressions and their meaning (Celani, Battachi & Arcidiacono, 1999), lack of outward response and difficulty understanding other people’s distress (Hauck, Fein, Waterhouse & Feinstein, 1995), decreased instances of social interaction initiation (Fein, 1995) as well as impairments in “spontaneous play” and the initiation of pretend/imaginary play (Libby, Powell, Messer, & Jordan, 1998).

It becomes evident that the vast majority of literature in this area has indeed been focused on young children (e.g. Gena, Krantz, McClannahan, 1996; Timler, Vogler-Elias, & McGill, 2007). Particular attention has been paid to the categorizing of behaviours (and hypothesizing on their causes) along with the effectiveness of certain interventions – especially in school-based settings and as they pertain to learning in class. Popular behavioural interventions, such as the dominant Applied Behavioural Analysis model, nearly always feature the adult as the mediator/agent of change. There is very little research demonstrating interventions based within childhood or adolescent social structures. Furthermore, there is even less research demonstrating the efficacy of these early interventions in improving social skills and connectedness into adulthood and over the lifespan. Weiss & Harris (2001) noted that literature on “social skills” for “older students and adults [with autism] is “quite limited” (p. 796) and this still seems to hold true 10 years later.

Evidence for Social Interest and Social Disconnectedness

Although there appears to be a dominant social construct that autistic people are not interested in friendships, there is considerable literature to counter this commonly held belief. Jobe & White’s 2006 study of loneliness and friendship quality in autistic adults found that the undergraduate with a “stronger autism phenotype” reported significantly more loneliness with fewer and shorter friendships than undergraduate peers in the study. The authors hypothesize that the loneliness experienced by some of the respondents with autism could be due to “lack of social skills and understanding” and not due to lack of social interest. They speculate that if individuals were content to be alone, they would not report negative affect directly related to loneliness (p. 1).

It is important to note is that so-called “high functioning” forms of autism such as Asperger syndrome can present particular difficulty for individuals as they are often associated with a higher level of awareness; thus, individuals might be more aware of their lack of social connectedness (Carrington & Graham, 2001). Bauminger & Kasari (2000) also found that children with high functioning autism reported greater levels of loneliness and less “friendship satisfaction”. It is possible that the different research findings in this area could be a result of the diversity of the population being studied; individual differences in age, autism diagnosis, type of autism disorder as well as levels of functioning and personality attributes could account for conflicting results within the literature.

Locke, Ishijima, Kasari, London (2010) suggest that loneliness and exclusion might sharply increase by high school due to classmates changing each period; along with the increasingly complex demands of young adult relationships vs. the relative simplicity of childhood friendships. Locke et al summarize (p.76): “As children enter adolescence, services become fewer and the gap between neurotypical peers and individuals with autism generally widens”. To this end, Locke et al ponder how we can be certain that childhood social skills interventions currently en vogue are effective without examining the experiences of adolescents and adults who have been exposed to these programs.

Farmer & Farmer (1996) also suggest that because friendship is often defined by shared interests and as interests become exponentially more diverse by high school, this further increases the difficulty of obtaining friendships later in childhood and adolescence. For example: relationships are no longer built solely around a few common interests: lunch time, the playground and school yard games, etc. The importance of intimacy within friendships and sexual relationships increases (Howard, Cohn & Ormond, 2006) - which of course, requires greater emotional maturity and a more sophisticated array of social skills.

Yet, despite a fair amount of research into autism and loneliness, there is very little research on the nature and quality of friendships experienced by individuals with autism. Locke et al (2010) suggest that this is due to the old belief that friendships held by autistic persons are either a “rare phenomenon or impossible feat” (p. 75).

Sexuality: Interest and Access

Platonic relationships such as friendships and work relationships can be challenging, but romantic relationships add yet another layer of complexity. Closely connected to stereotypes that autistic people are not overly concerned with friendships is the stereotype that autistic people are “asexual” but the evidence suggests such stereotypes are untrue and possibly oppressive. Stokes & Kaur’s (2005) study of parental concerns found their teenaged sons and daughters were interested in sexuality. Additionally, Newport (2002) found evidence for interest in marriage later in life.

Gougeon (2010) views autism and sexuality as a particularly controversial topic due to the persistent stereotyping of the disabled person’s sexuality. It is possible that these stereotypes contribute to the rather sparse amount of research and discussion in this area. Griffiths (2003) notes that society tends to label the sexuality of individuals with disabilities (developmental disabilities in particular) as child-like, deviant or hypersexual. It is often the case that persons with disabilities must deal with state, agency and family interference when it comes to dating and sexuality. Even though that interference might be well-intentioned – as in the case of parents fearing for their “child’s” vulnerability to sexual predation – it is still a reality that many persons with disabilities are subject to a high degree of intrusion and sexual/romantic “policing” by others.

Despite the various stereotypes about autistic people and sexuality, research does indicate that individuals with autism have levels of sexual interest similar to that of the general population (Henault and Atwood, 2002). Interestingly, while there appears to interest in sexual expression, there appears to be limited information available to young autistic adults. Kaur (2007), for example, found that adolescents and autistic adults obtained less romantic knowledge from their peers and media than their “neurotypical” counterparts and instead, their knowledge came from parents or from making their own social observations and for this reason, Nichols, Blakely & Smith (2010) believe that parents are the “best sex educators” even though they may find the role quite demanding. The parents shared concerns and confusion “that they feel unclear about what healthy sexuality could look like for their child” (p. 78). One parent, for example, shared:

I would love for my son to have loving relationships with people in his life that are a substitute for sexual relationships (p. 78).

Other issues raised by parents included worries that their children would have struggles understanding privacy, boundaries, personal space and social cues. All parents in the study expressed concerns about sexual abuse and exploitation due to the increased vulnerability of their children along with fears that their children might also exploit others unintentionally. Another parent shared: “I’m worried that my son is going to be perceived as a stalker when he is just lonely and wants someone to talk to” (p. 80).

The issue of “sexual access” for persons with disabilities is applicable to autistic people. (Grossman, Shuttleworth and Prinz, 2003). The authors use the example of a person with a speech or communication impairment attending a party: this individual has physical access to the party but “negotiating dates” (p. 92) could prove quite difficult. In this sense, they are “denied access” due to a variety of factors (e.g. social stigma, noise level and being generally misunderstood by others). The authors note that overcoming these barriers could be particularly difficult for persons living in a more restrictive home environment such as a group home or institution. Grossman states (2003):

The notion of development tends to homogenize bodies and minds, sensations and emotions, with the description of one trajectory for all people within a given population. As a result, the sexual identity development trajectories of disabled people are disciplined with silence for their unwillingness (or inability) to conform to this standard (p. 2).

Shuttleworth (2003) believes that improving this access could be as simple as increasing the media representation of persons with disabilities as a means of improving “sexual confidence” and shattering negative stereotypes. Shakespeare (in Grossman, Shuttleworth & Prinz, 2003) agrees that increasing the profile of persons with disabilities will in and of itself help ameliorate social/romantic isolation and combat the invisibility of disabled persons’ sexualities. He suggests that collecting narratives of persons with disabilities in research and academia is one such method to combat the invisibility of sexuality of disabled persons (p. 95).

Closing Comments: How are Autistic adults Faring? Research in their own Words

When research in this area has included the voices of autistic people, the results have been interesting and in some ways, surprising. Sperry & Mesibov (2005) investigated the social experiences of autistic adults by initiating open participant discussions. Topics included: workplace relationships, developing and maintaining interpersonal relationships, appropriate dating behaviour as well as personal perspectives of navigating the social world as a person with ASD (Sperry & Mesibov, 2005). Although the main purpose of the study was to identify social “challenges”, it is notable that many respondents were able to articulate strategies for “problem solving” social relationships. For example, respondents provided a number of insightful strategies to deal with issues such as disagreements at work, assessing personal space, joining in on conversations, and asking people out on dates. One respondent had this to say on the topic of extending a positive conservation with a person of interest:

Well, first of all, to extend a conversation you want to show interest in the other person, it’s not too hard; you just want to ask questions. Showing interest, letting them know you are interested in what they have to say is one of the main things no matter what kind of conversation you are having. Extend could be to go more sensitive, or more personal, or more intimate, not just deeper. What kind of extension are we talking about here? (p. 370)

Hurlbutt & Chalmere (2002) authored an excellent qualitative study of three high functioning autistic adults over a 9 month period in order to identify themes and unique life experiences. The interviewers used only two questions: a) describe your life and b) how has autism affected your life? One central theme discussed by participants was the idea of culture. These adults maintained that high functioning autistic people often identify as being part of a unique culture or community; as well as being experts on autism with their own valuable knowledge to share with others (including both autistic people and the general “neurotypical” population).

The respondents identified social supports as being essential to their life and development – primarily family but also social groups such as church communities. They also indicated that social skills training programs were important educational experiences for autistic people. They brought up issues about dating, particularly in identifying what body language and other non-verbal cues meant in social situations. One participant stated that he was “unable to understand the difference between friendship and romance” (p. 105, 2002). Interestingly, these social barriers were identified as being particularly problematic in the field of employment with a respondent observing that jobs were “80% social skills and 20% work” (p. 108).

Perhaps some of the most intriguing and significant additions to qualitative research in this area have come from an unexpected source: anthropology. Most anthropologists naturally focus on the rich ethnographies of the individual and tend to reject the medicalized view of autism. One such anthropologist (and individual with Asperger syndrome) is Dawn Eddings Prince (2010), who has written a very insightful account of her experiences and view of the world as a person and parent with Asperger syndrome. The following quote demonstrates her perspective that receiving a diagnosis of Asperger syndrome is not synonymous with emotional blankness or social disinterest:

When most people think of autism they think of violent, unreachable people in worlds completely of their own making, worlds without keys, without structure, feeling no empathy, lacking imagination, and  navailable to the deepest of human needs for contact and love. Having autism is the worst fate parents can imagine befalling their children and they dread its impact on their families (p. 58).

It is clear that so far, most research has been focused on either medical/neurological studies examining difference or on the integration and learning processes of children in classroom settings. There are a few studies investigating interventions specifically targeted at improving social connectedness and social functioning (e.g. Goldstein & Cisar, 1992) but there is limited research pertaining to older youth or adults across the lifespan. This could be due to the fact that increasing autism diagnosis rates is still a relatively recent development, and could also be due to a medical model lens pervading much of research in this area – a perspective that puts greater value in the measurable and the “curable” than exploratory studies.

Methods

The 26 participants in this research study were all adults between the ages of 16 and 59 with a mean age of 31. Participants were recruited from a number of disability and autism related community service organizations in the city of Ottawa, Canada. In order to maximize the number and depth of participant responses, methodology included the collection of both qualitative and quantitative data with two main approaches: an online electronic survey as well as one-on-one interviews.

The research is very much rooted in Participatory Action Research; before the survey questions were solidified, consultation with autistic people took place over a series of weeks. Several participants were involved in formulating and finalizing of the research instrument. One small group of participants also completed the preliminary survey and made suggestions for improving the final survey. Volunteers, for example, emphasized the importance of allowing respondents to answer based on real-life experiences as well as preferences and to allow for respondents to indicate when they did not feel able to answer a question. These steps were added with the practical aim of simply increasing the relevancy of the questions and the data gathered but also to help the project move closer to a participatory action model. (van de Sande & Schwartz, 2011).

Incorporating participatory action goals into the research required consultation with community members described above but also involved a perspective shift in formulating key survey questions. Attempts to maintain the simplicity and user-friendliness of the survey sometimes proved difficult to do and it was found that when trying to be inclusive, this often meant providing a range of complex response options. For example, one way Johnson, the primary researcher tried to mitigate this complexity in the multiple choice section was to use simple and straight forward/literal language wherever possible. Additionally, some short explanations and definitions were also provided to help guide participants. For example, ideas like “support” and “connection” are fairly abstract and broad, so a brief descriptive phrase was often included in parentheses.

Results

Part A – Quantitative Findings

In total, 26 individuals responded to the survey both online (19 responses) and in-person (7 responses). Gender breakdown indicated a ratio of 12 men to 14 women and the mean age of participants was 31. The majority of respondents reported being employed (14) while 9 indicated “student” as their primary status and several individuals indicated being an employed student. Relationship status reported varied (see Table 1) - particularly by gender. For example, 6 female respondents reported being in a long-term relationship (including marriage or common-law) while no male respondents indicated this relationship status. “Single” was the most commonly reported relationship status for all respondents (54%).

Table 1 - Gender & Relationship Status of Respondents

Count

 

Relationship status

Total

Single

Dating someone "casually"

In a relationship

In a long term relationship

Multiple partners

Long distance relationship

Gender

Male

9

1

1

0

1

0

12

Female

5

0

1

6

0

2

14

Total

14

1

2

6

1

2

26

 

Multiple Choice Questions

The first Likert-scale open-ended question asked respondents to consider their opinion regarding the importance of “feeling connected to friends” (Table 2). The majority of respondents (61.6%) rated this type of connection as either “quite important” or “essential – extremely important” (both split evenly at 30.8%). 38.5% reported that connection to friends was “somewhat important” and 19.25% felt they were “neutral – could take it or leave it”. A single respondent reported that this type of connection was “not very important [to me]”.

 

 

Table 2 - How important is it to feel connected to friends?

 

 

Frequency

Percent

Valid Percent

Cumulative Percent

 

Not very important to me

1

3.8

3.8

3.8

Neutral - could take it or leave it

5

19.2

19.2

23.1

Somewhat important

4

15.4

15.4

38.5

Quite important to me

8

30.8

30.8

69.2

Essential - extremely important

8

30.8

30.8

100.0

Total

26

100.0

100.0

 

 

A cursory glance at the graphs offered below reveal that a large portion of respondents are seeing friends considerably less often than they would like to. Participants were most likely to indicate actually seeing friends “infrequently – a few times a year (e.g. special occasions)” (34.6%) or “regularly – once a week to a couple times per month” (also 34.6%) with a significant portion choosing “semi-regularly – sees a friend/friends at least once a month”. Only 1 respondent reported seeing a friend “frequently – at least a few times a week”. This is in stark contrast to preferred number of friend interactions per month: in this category, 26.9% indicated that they would like to see friends “frequently” – while 46.2% preferred at least “regular” contact. 5 respondents (19.2%) desired “semi-frequent” contact and 2 individuals (7.7%) preferred “infrequent” meetings.

Preferences for desired amount of time spent with romantic partners was even higher – over 70% of respondents indicated that they would like to see partners frequently (“every day or at least 3-5 days of the week”). It is possible that this is related to qualitative responses which seemed to demonstrate preferences within the sample for a) one-on-one social interactions and b) interactions with familiar persons. The findings appear to be comparable with those of the general population and they are also in line with Henault & Atwood’s 2005 study of autistic adults which demonstrate a high level of interest in relationships when compared to the general population.

 

Figure 1 – Question: How often do you see friends in a 1 month period?

           

Figure 2 – Question: How often would you like to see friends within a 1 month period?

 

 

Looking at overall frequencies, a few other findings stand out. When respondents were asked how connected they felt overall (see Figure 4), the most common answer was “somewhat connected” at 46.2% (12 respondents). The other choices break down as follows: “disconnected” (19.2%), “connected” (19.2%) and “very connected” (15.4%). Results from this study indicate that almost 1/3 of the respondents felt disconnected in one way or another – from totally disconnected to somewhat connected while just over 1/3 reported feeling “connected to others”.  This reporting falls in line with what the respondents had indicated about their desire for more social interactions with friends (see Figures 1 and 2). Overall, it seems evident that many respondents are not connecting with others as frequently (and perhaps as closely) as they would like.

Respondents were also asked to consider whether or not they felt they could turn to someone else for support (whether practical or emotional). The results were almost evenly split between answer groupings with 50% of respondents stating “yes”, 34.6% reporting that they were “unsure” and 15.4% indicating that they did not believe they had anyone to turn to for support. For the questions pertaining to shared interests and perceptions of being understood by others, the answers ranged considerably but for the most part they were grouped around the middle to moderate range of responses. For example, 40% of respondents reported that their interests were “sometimes” shared by others – with 16% indicating their interests were “usually” shared, 16% reporting “occasionally” and 28% chose “never” or “rarely” shared. Again, when categories of responses are tabulated, we found an almost 50-50 split in responses between those who felt they had fairly positive experiences and those who reported less positive experiences. When participants were asked whether or not they felt understood by others, the answers were again grouped heavily around middle/moderate answers with fewer respondents indicating high or low answers. 23.1% of participants felt that they were understood “most of the time” while only 1 respondent stated that they were “always” understood. A full 30.8% said they felt understood “sometimes” and 38.4% indicated they were “never/almost never” or just “occasionally” understood by others

Summary of findings: Section one

The above quantitative data reveals several important findings. To begin, the findings suggest that the respondents possess a high level of social interest: most participants communicated a desire to interact with friends and romantic partners on a daily or weekly basis. Interestingly, the study shows that desire and fulfillment of desire are not always closely connected. For example, while the majority of respondents (over 60%) expressed a desire to see friends regularly or frequently, most respondents reported seeing friends on an infrequent to regular basis. On the one hand these findings could be viewed as being quite positive as the evidence suggests there is a desire to connect with others and that some participants are successful in doing so, but on the other hand it appears that connecting with friends and romantic partners occurs less frequently than most respondents would prefer. Connectedness to others affects the manner in which people feel that can turn to or ask others for help and or support. Many of the respondents reported having limited friendships, low levels of connectedness and limited sources of help. Only 50% respondents felt confident that they had another person to turn to for emotional and practical support

Part B – Qualitative Findings

Introduction

Findings from the qualitative interviews showed a considerable degree of concurrence with the qualitative data. Both sets of data confirmed that participant interest in social and romantic connections was high. In other words, most respondents within the group believed it was important to be socially connected and preferred to see friends and romantic partners on a daily or at least weekly basis. Despite the similarities in the findings, the following section should not be seen as repetitive as this section is intended to personalize the material examined in the questionnaire and allow the opportunity for respondents to articulate their individual concerns and interests; in other words to give a “subjective” voice to the “objective” statistics and describe those social experiences and preferences in greater detail. For instance, where do positive social interactions occur? Who do they occur with? And what is the difference between a negative social interaction versus a positive one? Respondents provided very thoughtful answers and insights to these questions, and their answers will be grouped into sections according to major themes.  To systematically examine the stories behind the numbers the following section is divided among a number of themes including: structure and familiarity; crowds versus small groups; positive, negative and mixed social experiences at work and school; making friends; suggestions for improving connectedness; social “disinterest” or lack of access? and online interaction.

Structure & Familiarity

One of the most dominant themes expressed in the open-ended section of the survey was a preference for structured social environments, such as a workplace, classroom or other familiar environment:

 

Work provides a structured environment where I find it easier to speak with people and get to know them than in less structured environments like chance encounters in various situations.

At school my interactions with classmates are usually only about school topics.

I enjoy helping others with understanding concepts and share what I have learned about interesting topics related to what we are doing in class.

I fixate on the bus and the pool. These areas are places I know a lot about so I like to go there so I know what to talk about.

           

While comfort with familiar people and situations was identified as being important, concern pertaining to social situations of a more spontaneous and improvised nature was expressed by several participants. Indeed, two sub-themes were frequently discussed under this heading: a) worrying about not having an obvious conversation topic and b) worrying about general behavioural expectations or social roles. Examples of social roles which respondents found confusing included any occasion that was socially ambiguous, such as a party or even unstructured class time, where behavioural guidelines are usually unclear and informal. For example, respondents discussed uncertainty around what they should say, how they should say it and to whom. This is eloquently explained by several respondents:

I don't enjoy interactions where topics and expectations are undefined.

I feel more comfortable in a classroom than in a cafeteria or another area where there is no clear relevant topics or behavioural expectations…

I enjoy participating in sports or organized activities where it is clear what to do and there is a clear conversational topic available.

I like stuff where people are invited to join in; like my social swing dance group. They welcome everyone. There's a lesson before that allows for light mixing. But I don't like breaking the ice; I find it hard.

I'm OK interacting about structured work topics, but unstructured discussion and socializing are baffling and stressful.

I like interacting in person but I usually say the wrong thing.

Evidence from the interviews suggests that there is preference for familiar surroundings and a preference for interacting with familiar people. At various points throughout the survey, participants communicated a greater inclination towards familiar people in their lives, usually family members, long-established friends and romantic partners. This is not a surprising finding and is likely a preference common to most people; surely most of us prefer interacting with those people who know well and with whom we share bonds (Carter & Keverne, 2002). Increased levels of familiarity also help to remove the stress and effort inherent in making a good impression and “breaking the ice” which many autistic people find very difficult.

 

On preferred social interactions:           

 

…Meeting with old friends who know me well (or used to know me well).

 …Interacting with people I know well.

 …. Small groups 2 to 5 people of whom I know very well…

I like socializing with my mom, people at work, my best friend's mom

ladies I see as a mother figure.

On the negative/overwhelming aspects of social interaction:

The whole meeting the other person is the hardest thing.

Large groups of new people.

Being one on one with a complete stranger is never fun…

Getting together where I do not know anyone.

On social opportunities in Ottawa:

There seem to be many interesting clubs that I would like to join if I can get up the nerve to meet new people.

Crowds versus Small Groups

Generally speaking, situations which commonly present a large number of strangers at one time were often perceived as less desirable. Participants were asked to identify social situations that felt “negative or overwhelming” and parties were often cited due to these challenges:

Parties where there are many people I've never met before, any situation with a crowd of people, noisy environments.

Talking to someone for the first time, getting to know someone new, hosting an event, making small talk or informal conversation.

Parties and large social get-togethers.

Parties (e.g. Christmas parties), pretty much any sort of social engagement, when I have to answer the telephone for work, going out to an event.

 

Typical places where young people can meet and socialize such as bars can and do create stress for young autistic adults and are sometimes mentioned as unlikely places for positive social interactions. For example, one participant observed that “…the bar scene is kind of a disgusting system to me.” And another respondent, also emphasized the many challenges of the “bar scene”:

I'm not good at going to bars, not a good 'picker upper’…drinkers have a

totally different language; I feel out of the loop. I don't get the jokes. I don't

fit in because I'm sober.

While many respondents noted the difficulties of dealing with the many personal interactions of social places such as bars, others shared their preference for close one-on-one interactions (or small groups) with people they knew well:

Small groups 2 to 5 people of whom I know very well, and only occasionally offend or befuddle.

We get together a few times a year, and that is very pleasant.

One on one time with a knitting/crochet friend is nice too.

Positive, Negative & Mixed Social Experiences at Work and School

When respondents were asked to describe their school and/or work experiences, the answers were diverse, with 12 respondents indicating positive experiences and 9 indicating negative experiences. 

Some examples of positive answers:

Mostly positive – people say hi to me in the hall; see my friends at school on a frequent basis; I like socializing with my mom, people at work; I enjoy helping others with understanding concepts and share what I have learned about interesting topics related to what we are doing in class; I try to respect peoples' boundaries at work, but my social experiences are usually not too bad.

Negative and/or “mixed” answers:

Bullying since my first day in middle school, throughout high school. In middle school I was still a little girl so I believed that telling on bullies is bad, now I know it's not.

Terrible. I was so shy that [nobody] want[ed] to speak with me. I change[d] school so [many] time[s].

I find that a couple of co-workers have negative attitudes toward me.

School – I live in residence. There are a lot of people. I sometimes just hide away in my room because it's all very overwhelming.

Isolated.

I work part time (2 days a week) in a very quiet boutique, I'm thankful not to see too many people in a day. It can be emotionally exhausting.

At high school, I felt like a loner. High school is the first time you have to make decisions. There is less structure [than elementary school] …before classes, after lunch…

Some of the experiences shared by respondents are reflected in other literature. Locke, Ishijima, Kasari & London (2010), for example, suggest that loneliness and exclusion often increase in high school. These authors argue that high school constitutes a greater social challenge because of classmates changing each period - creating more new people to adjust to, along with the increasing complexity of young adult relationships and the desire for deeper intimacy. Our findings also seem to suggest that in addition to these factors, a simple lack of structure might in itself constitute a great challenge to students with autism. As respondents noted, high school often involves much more unstructured time (lunch, breaks, etc.) where conversation topics are unclear and social roles murkier.

Although this sample is not large enough to make generalizations or comparisons to other populations of autistic people, it is notable that several respondents shared experiences of bullying, as previous studies have found that autistic people can experience higher levels of bullying in school settings. Research in this area is still in the preliminary stages, but one study by Little (2002) found that children spectrum disorders were 4 times as likely to experience bullying in school settings; that is, 55% reported bullying experiences compared to 13% of their neurotypical peers. Similar findings of higher rates of bullying were also found by Carter (2006) and Wainscott et al (2008). Gray (2004) has suggested that the “atypical” interests of persons with ASD and/or intense emotional reactions could be precipitating factors, although more research in this area is required. There is also very little current research on programs or interventions to address this phenomenon, though bullying in general has garnered intense media attention as of late, with a corresponding increase in literature exploring causes and potential interventions.

Making Friends

The second open-ended question on the survey asked respondents to consider how they would “get to know someone” and responses are indicated below:

I meet up with people with a hobby as my intention, and then let trust and bonding happen as a result of shared experiences.

Generally upon meeting someone there aren't many words exchanged. I get to know people over time in small bits.

Doing activities that I enjoy – common interests lead to friendships.

 

Discuss common interests, ask about them, empathize. Make small talk – VERY difficult for me.

They usually ask a bunch of questions and I try to remember to ask some back.

One participant had some specific advice to share on the topic of making friends:

Autism Ontario was the first group to get me plugged in. First group to teach me about my disability and connect me to the community…You need to get in contact with people who have things in common. I educated myself on how to make friends with conferences and social learning books.

Suggestions for Improving Connectedness

When respondents were asked to rate their own access to social opportunities and provide suggestions for new opportunities, there was a clear preference for structured social and special interest groups. Several respondents spoke favourably of meet-up groups specifically for autistic people or Asperger syndrome (e.g. “More Aspie social groups!”) while others lamented a lack of access or knowledge of appropriate groups or services:

 

It is possible that such opportunities exist but I am not aware of them or they are out of my price range.

…I don't find there are many places to meet girls my age.

I'm not particularly social, but I do wish I found more things that interested me to get OUT and do with others.

I don't know much about the social stuff. I don't have the options so I don't think about it.

I know there are clubs. I just don't know where to find them. I found out about this one through Y's Owl.

Overall it appeared that individuals within the sample had a clear preference for social groups that offered some kind of structure – either because it was centred around a specific hobby and thus provided a clear conversation topic or because the structure of the group itself contained enough direction and rules to make behavioural expectations clear and encourage participation from everyone – thus avoiding role confusion or the formation of exclusive cliques. One participant noted that his swing dance group was structured this way (everyone was invited to join in after an initial lesson at the beginning) and this helped to create a welcoming environment. Moreover, because many respondents desired familiarity of surroundings, routine of activities and familiarity of persons structured groups and clubs are understandably popular choices.

Social “Disinterest” or Lack of Access?

Most of the respondents indicated a desire for friends and intimate partners but a small number indicated no romantic interests and developing friendships. Only 4 individuals made reference to a lack of interest in social engagement with family/friends/prospective romantic partners, but it is unclear whether or not this simply meant they felt their social needs were already being met or if they were not interested in social connection in general. Other complicating factors (lack of knowledge/access to social groups, economic barriers and/or social anxiety) could also be at play. Below are a few examples of these types of statements:

Do you feel you have enough social opportunities in Ottawa? If yes – can you describe? If not – do you have any ideas or recommendations?

I don't know, because I don't seek out social opportunities; I never do this.

Yes. Because of my family life, I actually spend more time in the company of others than I would like;

I guess so. If there were more, I'm not sure I would go; I don't know much about the social stuff. I don't have the options so I don't think about it.

It is interesting to note that while some respondents may have been disinterested in socialization, the majority of respondents were interested in developing relationships – i.e. visiting with friends and maintaining these friendships. Indeed, many reported not being with friends as much as they would like.

The above findings regarding interest in dating and friendships for “higher functioning” autistic people also reflect much of the current available literature on the topic. The literature has established that persons with “high functioning” autism might actually experience of social disconnect and loneliness at higher rates: Carrington & Graham (2001) suggest that this could be due to more acute levels of self-awareness, while Bauminger & Kasari (2000) found that “high functioning” autistic individuals tended to report high levels of loneliness and decreased friendship satisfaction.

Online Interaction

Another topic explored in this research was interest in on-line interaction and it is evident that respondents demonstrated a strong preference for social interaction that took place over the internet as opposed to face-to-face or telephone interactions. The following are a few examples of this preference:

 

Facebook and Twitter are my friends.

Interacting online is very comfortable for me. Chatting while playing a game is also comfortable and great for bonding. I also just like to listen to people's stories.

The internet was not only identified as a very good tool for meeting new people, but also an excellent tool for meeting educational and employment needs:

For social activity: This city is probably the worst for meeting new people. The layout lends itself to exclusive cliques in certain areas. The best thing to do is meet people in [an online] forum and then set up local hangouts, in my experience.

For school: I am an online student, so my school social experiences are online only.

For work: I work for a virtual organization. I spend most of the day alone, with some contact with others through the use of social media.

What is it about online interaction that appeals to persons on the autism spectrum? As far as these authors are aware there are no studies examining this relationship in the literature even though it seems to play an important part in the lives of many of the participants. The internet has been mentioned by advocates who are members of the community – most notably, Singer (1999) who recommended that autistic people use the internet as a “prosthetic social device”. By looking at other dominant themes brought up by respondents, it seems possible that the internet might represent an ideal social milieu for autistic people because the internet can provide structure, familiarity and control in social interactions. If one wants to have a discussion about a specific hobby (and having a specific conversation topic was also deemed essential to the respondents), one can find a website and a forum specific to that desire. Engaging in a forum is also not as overwhelming because it does not happen face-to-face in real time; instead, people can take their time to formulate responses at their own pace. In this way, it seems to provide opportunities for autistic people to meet and discuss issues important to them without having to deal with barriers presented to them by more unpredictable, spontaneous and informal interactions that happen face-to-face.

Discussion

Three dominant findings emerge from this research. Firstly, the participants reported varying but generally high levels of social and romantic interests. Most respondents rated social connection as important, and most preferred to see friends and romantic partners regularly or frequently.

The second finding is that which the social connections might look like could vary greatly both within this group and as compared to “neurotypical” persons. It is not clear whether these preferences are based on traits specific to the individual or related to autism symptomatology, but is likely a combination of multiple factors. That being said, strong preferences for structure (e.g. concerns about having specific conversation topics) and familiarity (desiring the company of close family members, old friends or significant others above less familiar individuals) were often stated by participants. This showed that while social interest was high, context mattered a great deal: for examples, a party, bar or classroom with large numbers of unfamiliar persons and unstructured discussions would most likely not be welcomed by most of the participants from the sample.

The third finding that must be discussed is the apparent disparity observed between desired time spent with friends versus the actual time spent with friends. Although respondents’ interests in developing and maintaining friendships may not have been shared by all respondents, it is a very important finding as a significant number of respondents described engaging in positive and rewarding relationships. This finding is quite important as it refutes the common assumption that autistic people can often be generalized into one homogenous socially disinterested group. On the contrary, the findings from this study indicate that many respondents actively pursue social interactions with people; although they are often with close family members, partners or long-established friends

In summary, it is evident that some individuals with autism might prefer to engage in wide and varied social circles and to pursue relationships in ways similar to their neurotypical counterparts. And other individuals might be more limited due to communication barriers. Another group might find themselves in an awkward “middle ground” as discussed by Carrington & Graham, 2001; Bauminger & Kasari, 2000 wherein individuals are capable but isolated and still very much aware of this exclusion.

When respondents in this study were asked to provide suggestions for improving their social experiences, there were two primary categories of answers. The first category addressed access, as participants lamented a lack of knowledge regarding opportunities that might exist in their community and beyond. They said they were interested in expanding their social networks, but did not know how to do so. The issue of access and exposure to programs and opportunities is very pertinent for autistic people, and particularly relevant for the age bracket of respondents (adults over age 16) as these are individuals who have already passed through various educational/school-related supports. It is also possible that a more pronounced service gap exists for “high-functioning” autistic people, as it is more likely for such individuals (because of their capacity) to “fall through the cracks”. As an antidote to this disconnect, some advocates such as Singer (1999) who coined the term “neurodiversity”, have recommended the use of the internet as a “prosthetic social device” (p. 62) as a means of connection and expression. Certainly, within this study’s small sample of 26 participants there were many references to online interactions. There were at least 38 responses regarding on line services as a preferred method of communication and connection.

The second category of answers pertaining to social opportunities addressed the need for social groups specific to persons on the autism spectrum; with a number of respondents indicating the need for “more Aspie groups!” and more social-recreational groups geared towards autistic people exclusively. The desire for more groups is typical of the following response:

Autism Ontario was the first group to get me plugged in…. First group to teach me about my disability and connect me to the community…you need to get in contact with people who have things in common.

These findings about the need for groups activities is indicative of the literature. Orsmond, Krauss and Seltzer (2004), for example, found engagement in social/recreational activities outside of the home was associated with higher rates of social connectedness.  It appears that when autistic people are afforded the opportunity to connect with other individuals on the spectrum, they tend to participate in these groups. These groups have proven to be quite successful in that they provide individuals the opportunity to make friends with others experiencing similar challenges and successes, and the groups have been instrumental in providing a mechanism wherein individuals with autism can learn about and access other resources and programs in the community. Moreover, social/recreational and support groups can even be considered an empowering experience and a catalyst for social change and community organizing.

It is important to note that while many of the respondents indicated the need for groups and social recreational opportunities specific to autistic people, this does not mean that participants want to be excluded from the mainstream. In fact, the opposite is true, as respondents made a number of insightful comments about greater social inclusion in key sectors such as school, employment as well as community and social services.    

At School

Schools are (arguably) the second most important socialization agent in the lives of most North Americans after the family of origin, and certainly a sphere where politics and policy play out frequently. And now, as children are more frequently integrated into mainstream classroom settings, it seems quite relevant to examine the social impacts of the school environment on autistic people. Studies of children in school-settings are well known, though much of the focus tends to be on effective teaching techniques and pedagogies and less on their social integration into the classroom and wider school culture/environment. We find this curious as social impairments are central to the diagnosis of autism.

But even if schools are incapable or unwilling to ensure social inclusion for children, they must at least be responsible for providing safe environments. This study briefly touched on school experiences of participants by asking respondents to share any positive or negative stories from their time in the school system. Some of these stories contained instances and histories related to bullying experiences. Little’s exploration of bullying experiences in this population found that children spectrum disorders were 4 times as likely to experience bullying in school settings (2002) than their non-autistic peers, and higher rates of bullying in this group have also been found by Carter (2006) and Wainscott et al (2008).

Equally troubling is the lack of studies exploring the experiences of students with autism or Asperger syndrome as they transition to high school and post-secondary institutions. Connor (2013) believes this further evinces the skew towards birth to elementary school within the research, and that an important part of the development processes of autistic people/Asperger syndrome is ultimately ignored, as though they simply disappear as they reach adulthood. It is of the utmost importance for individuals with high functioning autism and Asperger syndrome to be encouraged and supported to further their education in order to reach greater economic independence (Grandin, 1990). Persons with learning disabilities are increasingly able to receive educational supports and services at the post-secondary level but there appears to be a reluctance to extend these supports to persons with a “social” disability. Some college officials have argued that it is not feasible to teach such students the “social survival skills” necessary to thrive in a post-secondary environment (Farrell, 2004).

At Work

It is evident from the qualitative data that work environments were not considered especially important to the respondents for making social contacts and friends. Although a few respondents did say that they enjoyed some of the discussions they had with workmates, nobody discussed work as a place where very close relationships were established or maintained. This might be why peer support groups and clubs seemed to be favoured by a majority of participants, and seemed to present greater social opportunities to individuals with autism. The fact that work relationships did not seem to be considered particularly significant to respondents might also emphasize the importance of quality relationships versus the number of superficial relationships – even if those work relationships are pleasant and cordial.

Notwithstanding the above observations, it is possible that the respondents  might desire or benefit from closer work relationships but do not know how to access these types relationships, or how to make the leap from cordial work camaraderie into a deeper friendship. And if shared interests are truly essential to feeling connected, such relationships might not be desired without some sort of shared hobby or common interests. In brief, it is difficult to make specific assertions or recommendations on this matter based on the above research focus. It is our belief that the intricacies of relationships in the workplace and friendships could represent another interesting topic for future research.

In the Community: Implications for Social Services

The question: which services or interventions will truly improve the social lives of autistic people spectrum disorders in a meaningful way? is often posed. Certainly ABA methods are the dominant choice in most North American contexts. But are these therapies enough to ensure social inclusion? And is it possible that such therapies are perhaps unwarranted and oppressive towards those individuals who function with a more “manageable” level of difference? Baker (2006) argues:

For individuals who are more involved with autism (particularly those who tend toward self-injury), ABA therapy can be tremendously life-enriching. For those for whom autism is a more manageable difference, ABA therapy can represent oppression of essential elements of their personality and thought process that discriminates against all but the more neurologically typical thought and behaviour patterns. The effectiveness of public sector programs depends on accommodation of both (p. 27).

An individual with autism also speaks out on this issue in Sinclair (2005):

We are interested in workshops about positive ways of living with autism, about functioning as autistic people in a neurotypical world and about the disability movement and its significance for autistic people. We are not interested in workshops about how to cure, prevent or overcome autism (p. 24).

What are the implications for social workers? Awareness of the neurodiversity movement as well as the various local and national autism advocacy groups in Canada should be essential knowledge for any professional working with youth or adult with autism. Knowledge of any other community-specific programming such as social-recreational activities or support groups could also be particularly important as, at least in this sample, these groups were strongly preferred over less structured forms of social interaction. Other studies (Orsmond, Krauss, Seltzer, 2004) have also demonstrated that such groups seem to provide participants with a greater sense of social inclusion.

For social workers and other professionals working with families of children or Asperger syndrome it is much more complicated, as they must also contend with the family’s expectations and aspirations for their child – whether that individual is a “child” or an adult. Sinclair (1993) suggested in his seminal work “Don’t Mourn for Us” that parents who become interested in curing autism are often mourning the loss of their “normal” child. He argues that parents and relatives should instead accept the autism diagnosis as a pervasive and integral part of their child’s identity instead. While this can certainly seem like an insurmountable task in some cases, and one that can require considerable resources and support to achieve, it is a valuable alternative perspective that might also bring hope to families and individuals.

Conclusion and Recommendations for Future Research

 

In terms of possible directions for future research projects, it would be relevant to investigate gender, racial, ethnic and social class differences of respondents with autism. In particular, it is recommended that future research at least explore gender differences. The authors put forth this recommendation because although gender itself was not found to correlate to any other variables, female respondents were much more likely to report being a relationship, and this in itself is an interesting finding which could use further exploration. Another research area that could provide useful insights into the social experiences of autistic people is a deeper examination of internet usage/culture and/or gamer culture, as these areas of interest seem to be inextricably linked to this population.

Additionally, further research into the quality of friendships and relationships for autistic people could also yield interesting results. This study really only touched upon the surface of social experiences for this population. For instance, although it was established that social interest was high and that most respondents would like to spend more time with friends, it would be interesting to do follow up research which explores those interactions in more depth. This study found that many respondents prefer social opportunities based around specific interests and hobbies, as this provides conversation topics and clearer roles. But to get closer to understanding the social preferences and subjective internal experiences of individuals with autism clearly requires a deeper analysis and studies undertaken and analyzed by autistic people.

If the rates of diagnosed autism continue to grow, research into the social realities of autistic people will only become more important over time. Future research might look at how autistic people can be better included in “mainstream” social settings including work, school and beyond. Conversely, future research might instead focus on whether or not having autism constitutes a community or culture and the further development of spaces which are specific to autistic people. Although ongoing research into autism and the needs of autistic people is obviously needed, it is clear that there is no singular voice for autistic people – as  they do not represent a homogenous population. For example, while some people favour “cure”-based research, others are strong advocates for reconstructing autism as a form of neurodiversity. This is why, more than anything else, research about autistic people must have greater inclusion of autistic people - with the hope being that  more and more research is authored by autistic people and Asperger syndrome.

In this spirit and as a reminder that autistic people might have different but equally valid viewpoints, the researchers would like to conclude the article with a quote from an individual diagnosed with Asperger syndrome about his own perspective on social interactions and perceptions of persons on the spectrum:

            People say autistics are very routine offenders. They’re very picky, generally a little obsessive, compulsive, very fixated on routines, order, structure. I think

            this is a little unfair, you see. Because when you get right down to it, an autistic may have a favourite way of lining up his clothes, or maybe get pissed

            off if he doesn’t get meatloaf for dinner on Friday night. But the autistic probably doesn’t try to insert an arbitrary sense of social conventions on

            others to govern every other interaction in life. When you get right down to it, who’s really picky, the guy who eats his meatloaf on a Friday or the one who

            expects you to conform to a set of eye-contact, indirect communications and otherwise generally inefficient and often unreliable forms of communication

            for the sake of smoothing social interactions which relationships between Aspies prove aren’t really necessary? It’s not really necessary to have all of

            these tricks, it’s just habitual. I guess…I just always find it a little ironic that the neurotypicals call the aspies routine-fixated. They’ve got their own.

            (p. 123, Connor, 2013)

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