Numerous studies have focused on the self-system of typically developing children or adolescents can be found in current literature. However, research on the same topic involving individuals with disabilities has been limited. In particular, research on the self system involving children or adolescents with ASD has been scarce.
Three Dimensions of the Self-system
The self system is a complex concept that involves “a multitude of notions of the self” (Zahavi, 2010, p. 548). When investigating the “multifaceted character of self,” one has to be able to tell the difference between “types of self-awareness,” and understand “how they relate to each other” (Zahavi, 2010, p. 549). In general, current research in the field mainly explores the self in individuals with ASD from one of the following three dimensions: an experiential dimension, an interpersonal dimension and a narrative dimension (Zahavi, 2010).
Early research aimed at identifying a general impairment of self-experience and self understanding in individuals with ASD falls under the category of experiential dimension. Under this framework, the mechanism that one accesses to one’s own mind is the same as one employs to understand mental states of others, which means, the same mediating theory goes for both self and other (Carruthers and Smith, 1996; Frith and Happé, 1999). For example, participants with a diagnosis of ASD were asked to complete a standardized protocol to examine their performance on a certain task, then comparison will be made with typically developing peers on the same task to see how the two groups perform differently. However, this approach has been criticized recently due to conflicting research findings (Zahavi, 2010). For example, in Baron-Cohen’s (1989) earlier publication, he believed children with autism were mind-blind and had little awareness of their own mental states; but then in his later work, he stated that children with classic autism singularly focus on the self (Baron-Cohen, 2005).
More recent research, on the other hand, takes on the interpersonal dimension method targeting specific deficits related to the self (Zahavi, 2010). Technically, it refers to a dimension of self that is basically reflected by, or mediated through, the perspectives of others. In other words, it focuses on “the capacity to understand and adopt the evaluative perspectives of others on oneself,” and “to that extent, impairments on the level of interpersonal engagement will have ramifications for the subsequent development of various aspects of self” (Zahavi, 2010, p. 550). For example, as mentioned previously, when an individual with ASD shows impairments in recognizing others’ facial expressions (i.e., emotional states), he/she will not know how to respond appropriately to match the social situation, which may result in peer rejection (Bauminger et al., 2003). Repeated social failures are associated with emotional issues such as social anxiety or depression (Bauminger et al., 2003). This will definitely have a negative impact on the development of self in individuals with ASD.
The third approach is focused on the narrative dimension of self. Basically, according to the narrative approach, information about the self is collected via self narrative, from which we can synthesize “the diverse and heterogeneous aspects of life” and coordinate “different temporal dimensions,” as well as establish “a web of semantic relations that link past, present and future events into a meaningful whole”; the narrative self includes investment of others, just like “the story of any individual life is always interwoven with the stories of others” (Zahavi, 2010, p. 551). When this approach is used to explore the self in individuals with ASD, their own voice can be better heard.
In summary, the three dimensions are approaches that can be used to analyze various aspects of the self-system in individuals with ASD from a philosophical perspective. They are interrelated, and individuals with ASD can have selective impairment. The following section provides a brief review of existing literature exploring various aspects of the self involving individuals with ASD using the above three approaches.
Experiential Dimension Approach
Capps et al. (1995) conducted the first comparative study examining the relationships between perceived self-competence (i.e., self-perception of personal worth and efficacy), cognitive ability, understanding of emotional states, and parent report of social adaptation in 18 preadolescents and adolescents with high-functioning autism (HFA) and 20 comparison peers. The participants were asked to complete the Perceived Competence Scale for Children (SPPC, Harter, 1985) and to identify the four emotional states presented to them. In addition, parents of children with HFA were asked to complete the Vineland Adaptive Behavior Scales (Sparrow and Cicchetti, 1989) to find out their children’s social and adaptive competencies in the following four domains: communication, daily living skills, socialization, and motor skills.
Results suggested that overall participants with HFA perceived themselves to be less competent than their comparison peers in all but the cognitive domain. When correlating with IQ, results indicated that, in the HFA group, participants with higher IQ scores seemed to perceive themselves as less competent in the social domain than those with lower IQ scores, but have better understanding of emotion in self and others. However, in the comparison group, IQ was found to be positively correlated with their perceived cognitive but not social competence. Parent reports showed that in the HFA group, participants with higher IQ who perceived themselves less social competence displayed less emotional distress, such as sadness or fear, than those who have lower IQ but perceived greater social competence. Researchers concluded that HFA participants with higher IQ who were able to better understand emotions might have greater self-awareness allowing them to see the difference (e.g., social limitations) between themselves and typically developing peers.
A later study that sought to replicate the above study found slightly different results. Vickerstaff et al. (2007) also used the SPPC to investigate self-perceptions of social limitations and relationship between self-perceived social deficits and depression in 22 children and adolescents with HFA. Results also confirmed Capps et al. (1995)’s findings that the higher IQ the participants have, the lower level of self-perceived social competence, and vice versus. However, an important difference emerged showing that participants with higher IQ who displayed lower self-perceived social competence actually self reported higher level of depression symptoms, in contrast to the original study the parents reported fewer depression symptoms in HFA participants with higher IQ (Capps et al., 1995). The researchers reasoned that an increase in awareness of their own social communication deficits (e.g., unable to fit in their peers’ social world) and their inability to remedy these social situations may contribute to the development of such emotional distress including symptoms of depression and anxiety. Vickerstaff et al. (2007) also stressed that it is the child’s self-perceived social competence that relates to depression symptoms, not the actual level of their social competences as rated by their parents and teachers.
To examine the understanding of own inner mental states in adolescents with AS, Dritschel et al. (2010) compared 22 participants with AS and same number of typically developing peers. Results showed that adolescents with AS had more difficulties in this aspect of social functioning than their typically developing peers or than adults with the same condition (i.e., AS). Specifically, due to their awareness of own social skills limitation and their difficulty in understanding self inner mental states, adolescents with AS tended to “overestimate other people’s social competence” (p. 517). For example, adolescents with AS would consult “a comparison person to know more about their own inner mental states than themselves” (p. 515), suggesting “a poorly differentiated self-identity may underline social difficulties” (p. 517), and can cause emotional issues such as depression and anxiety. This is consistent with existing research findings (Attwood, 1998; Gillott et al., 2001; Bauminger et al., 2003).
A recent Japanese study (Yoshimura and Toichi, 2014) yielded similar findings. They examined self-consciousness (a type of self-awareness) in 18 adolescents with AS, 19 with PDD-NOS and 19 typically developing as control group using an episodic memory task (i.e., self-reference effect). Results showed that both the PDDNOS group and the control group did very well, but the AS group did not. The researchers found that both ASD groups (i.e., PDDNOS and AS) showed an atypical pattern of relationship between memory performance and IQ. Based on the results, the researchers believed that unlike individuals with AS, individuals with PDDNOS may have the same level of self-consciousness as their typically developing peers. However, maybe due to their unique cognitive process (e.g., being aware of what was going on around them but unable to self-regulate own behaviors), the way of being self-conscious in this group seemed atypical, which lead to social impairments similar to those experienced by the AS group. The researchers also pointed out the relationship between psychiatric disorders and the level of self-consciousness in ASD. As generally recognized (e.g., Mazurek and Kanne, 2010), the higher IQ a person with ASD has, the more insight and self-awareness of own deficits in three core areas (i.e., social, communication and behavior domains) he/she has, which can cause anxiety/depression. Thus, it is not surprising that individuals with high functioning ASD show more anxiety/depression symptoms than those who are low functioning on the spectrum.
Similarly, Elmose and Happé (2014) examined accuracy of judging own memory performance in response to social vs. non-social stimuli in a group of children with ASD in comparison to a group of typically developing (or TD) children. Results indicated comparable levels and patterns of accuracy in the ASD and TD groups, with ASD group being more accurate in judging own memory for non-social than social stimuli, and the opposite pattern for the TD group.
Schriber et al. (2014) examined personality and self-insight in individuals with ASD. They first compared Self-Report of Big Five personality traits in adults with ASD and TD controls, then in children/adolescents. Results suggested that personality differences between ASD and TD individuals (1) were evident in both children/adolescents and adulthood; (2) were similar for men and women; (3) were found via self- and parent report. Compared to their TD peers, individuals with ASD tended to more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience. Researchers also found that these personality trails predict ASD diagnosis well. The researchers also assessed the level of self-insight in these two group by examining the differences in self-other agreement and self-enhancement (vs. self-diminishment) biases (in the personality protocol mentioned above) by comparing the data collected via self-report and parent reports. The study failed to find significant difference in self-insight. However, results suggested that although individuals with ASD had similar level of insight into self-other agreement to TD control group, individuals with ASD had a tendency to self-enhance, while TD individuals to self-diminish.
Interpersonal Dimension Approach
In a study examining the relationship between social acceptance, internalizing and externalizing problem behaviors, perceived social skills and friendships, Viecili et al. (2010) collected data from 40 children and adolescents with autism via self report, where parents were interviewed for the number of friends their child had. Results showed that social acceptance was positively correlated with social skills and number of friends in school and negatively correlated with internalizing behaviors including symptoms of anxiety, depression, or low self-esteem. Consistent with previous research, these findings indicate that greater social acceptance may also have a positive impact on self-concept of youth with developmental disabilities including autism (Weiss et al., 2003).
Another study aimed at measuring perceptions of social problems and adaptive behaviors in children and youth with AS yielded somewhat different but insightful findings. Barnhill et al. (2000) used the Behavior Assessment System for Children (BASC, Reynolds and Kamphaus, 1992) to investigate the perception difference between parents (parent rating scale), teachers (teacher rating scale), and student self (self-report of personality). A total of 20 individuals with AS participated in the study. Results revealed that there was significant difference in perceptions between parents and the teachers in most sub-domains. In general, parents reported high-level mental, emotional, and behavioral problems in their children. Teachers reported similar but much less severe symptoms. Results also showed the self perceptions of individuals with AS were distinctly different from parents’ and teachers’. Students themselves were not aware of having these problems (e.g., they perceived themselves to be similar to peers, or their responses were in the average range) and still felt positive about their general social skills. Researchers concluded that children/youth with AS lack self awareness or denial of their disability. Mazefsky et al. (2011) argued that although self-report measures by individuals with ASD may be able to offer valuable information to some extent, professionals who work with this population should not rely too heavily on self-report instruments for decision-making, better coupled with other data collection approaches such as observation or parent and/or teacher report, to get a more objective view.
This section reviewed several studies using self-narrative approach to measure the self in individuals with ASD. Lee and Hobson (1998) used Damon and Harter’s Self-Understanding Interview (or SUI, 1988) to measure the self-concept of social experiences in children and adolescents with autism and intellectual disability (ID). Results from the SUI showed that compared to their peers with ID, participants with autism tended to talk less about their social experiences; however, they were able to describe themselves perfectly in physical, active, and even psychological terms. Researchers hypothesized that these individuals seemed to be less concerned about the issues of their social relationships and interactions with others. This indicated some individuals with ASD might have selective impairments in the psychological or interpersonal self, which were also referred to the so-called theory of mind deficits that prevented them from understanding their own social deficits (Baron-Cohen, 1995). Williams (2010) believed individuals with ASD would apply an alternative, compensatory mechanism to assist themselves in understanding mental states of own or of others when they have a selective theory of mind deficit, for example, via memorizing social or behavioral rules.
Farley et al. (2010) replicated the above study. They employed a modified version of Damon and Harter’s (1988) self-as-subject interview, and focused on narratives of 16 adolescents with HFA or AS and a comparison group of typically developing peers, aiming at examining their ability to conceptualize self through the perceptions of other. The participants were asked to conceptualize themselves from others’ perspectives. Results showed although there was no significant difference in the ability to self-conceptualize under both the categories of continuity and distinctiveness between adolescents with ASD and their comparison peers, the ASD group had more difficulty in self-conceptualization of agency, which was defined as “the information, influences, and control of the self” (Farley et al., 2010, p. 526). The researchers argued that only certain aspects of the self in individuals with ASD are impaired, and should be examined separately to fully understand the specific strengths and needs of individuals with ASD.
In a more recent study that examines self presentation skills of high-functioning children and adolescents with ASD (Scheeren et al., 2010), the participants were asked to describe themselves twice, first without any direction from audience (in this case, the audience were the researchers) as a baseline condition, then with audience preference and demands as a direction-guided condition. Results showed both participants with ASD and the comparison group tended to provide a more positive description about themselves under directed condition. However, the ASD group seemed to be less skillful in responding to the audience directions, compared to the comparison group. The researchers reasoned that this might be a result of their theory of mind deficits or their tendency to rigidly stick to moral and social rules.
ASAN intern Lydia Brown originally published this article on her blog Autistic Hoya under the title The Significance of Semantics: Person-First Language: Why It Matters.
At the Adult Services Subcommittee’s final meeting last Wednesday, much to do was made about semantic disagreements — “ASD individual” versus “individual with ASD,” and of course, the dreaded “person with autism” or “person who has autism” versus “autistic person.” These issues of semantics are hot button issues, and rightfully so.
Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase — even if it holds the same literal meaning — alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.
In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.
Yet, while I have been familiar with this rift among the autism community over the use of “person with autism” as opposed to “Autistic person,” I hadn’t fully explored the diversity of perspectives on the topic until now.
During last Wednesday’s meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing “ASD individual” in our report to “individual with ASD.” The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. “I disagree,” she said as the suggestion was read aloud. “I’m not a person with autism; I am Autistic.”
Immediately, a mother sitting next to her responded, “I come from a time where that word, ‘autistic,’ had — still has — a negative meaning. It’s offensive. When someone refers to my son as ‘the autistic,’ I cringe at that word; I get ready to defend him.”
After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language — from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that’s a great idea. In fact, when discussing specific people, I have never once heard anyone — self-advocate, parent, teacher, or otherwise — refer to a person as anything except by his or her name. I can’t think of any teacher — at least any decent one — who would refer to a student as “that Autistic kid,” or “that kid with autism.” And I certainly can’t think of any parent who wouldn’t refer to his or her child by name.
But why are we self-advocates so opposed to this terminology? Aren’t we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don’t. Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.
One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous people,” the same principle should be used with autism. There are some fundamental flaws with this analogy, however.
Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.
Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.
What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.
Firstly, I saw in at least two articles in favor of using “person with autism” that the authors strongly oppose language referring to disabilities like “suffers from,” (i.e. “Alan suffers from Asperger’s syndrome;” “Joey, an autism sufferer;” etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology “person with autism” would disagree with language like “suffers from,” but it is still interesting that there are those who do. It suggests a fundamental shared value — that people with different neurological conditions are not “suffering” because of their difference or disability.
Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying “person” before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, “person with autism” is “persona con autismo,” while “Autistic person” becomes “persona autística.” In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person’s identity to the side in favor of political correctness.
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.
Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.
But let’s think about what we are doing when we use these terms. When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.
That’s why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as “a silly semantics argument” denies the power of language.
What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.
So what can we do moving forward? Or, more importantly, what should we do? To those of you who use “person with autism,” I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use “Autistic person,” I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.
That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying — and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual’s voice and feelings as equally important. Otherwise, we’ll become even more dysfunctional than my subcommittee has been in recent months.
Interested in other perspectives? Here are some links to feed your curiosity.
(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein.)
People who use “autistic” or “autistic person”:
– Why I dislike “person first” language by Jim Sinclair, founder of Autism Network International (ANI)
– ‘Autistic’ or ‘person with autism’? by Jean Winegardner
– Autistic vs Person With Autism by Karin
– Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
– Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley
– On Language by Gordon Darroch
– Climb off your high horse already by Rob Gorski
– Autism First (Again) by Jeff Gitchel (new!)
People who use “person with autism” or “person who has autism”:
– People First Language: What it is and why it matters by the Arc of Anchorage
– Person First Language
– Put me first: The importance of person-first language by Mary Tobin, M.Ed.
– Person First Language by Katie Nelson
– An Autism Parent on Kathie Snow’s People First Language by Julie L.
– People First Language by Kathie Snow (PDF)
– Olmsted on Autism: “Retards” and “Autistics” by Dan Olmsted
People who use both interchangeably:
– “Has Autism” versus “Is Autistic”; A muddled debate from Autism and Oughtisms
– The Last Word on “Person First” Language by Stuart Duncan
– Is It “Autistic Person” or “Person with Autism”? by Stuart Duncan