Abstract

Excerpts from current research with people who have autism using online discussion groups are provided. Two major themes emerged that focus on “expert” knowledge of autism and identity. In contrast to the image of people with autism being unable to speak for themselves, our research on chat rooms has demonstrated that these individuals are finding a voice in an online environment, and the Internet may be a powerful tool in enabling this voice to be heard. The challenge that experiential knowledge poses to scientific knowledge is discussed in light of diagnosis, and the positive nature of an autism spectrum (AS) identity is highlighted as a common thread in discussions.

Internet technology, which has developed rapidly in recent years, and offers researchers new possibilities for investigations, particularly when working with hard-to-reach groups who may benefit from a move away from more traditional methodologies. Bowker and Tuffin (2002) have recently demonstrated the usefulness of online interviews with individuals who have disabilities and who can control the disclosure of their impairment. In addition to providing a useful research tool, the wider availability of the Internet has begun to challenge stereotypes surrounding the competence of people with autism to communicate effectively (Ward & Meyer, 1999). Ward and Meyer proposed that individuals with autism may be proficient in skills related to technology and written communication, which may place them in an ideal position to take advantage of the developments in new technologies to advocate their own views. This is further supported in the research conducted by Nakamura and Junichi (2000), who effectively demonstrated the benefits of computer-mediated communication (using a pager) for a 14-year-old with autism. These authors challenged the notion that poor communication patterns in face-to-face communication situations are reflective of communication abilities as a whole. Traditional face-to-face investigations of the perspectives of people with autism are more challenging because people with autism find elements of face-to-face situations difficult. However, in contrast, computer-mediated communication may pose less challenges and may facilitate communication more easily.

Recent authors have highlighted the increasing use of Internet technologies by people with autism as both a forum for self-advocacy and as a “safe” way of meeting other members of the “autistic community” (e.g., Blume, 1997; Dekker, 2000). Dekker emphasized the central position that the Internet holds for many people who have autism with regards to communication. In his discussion Dekker compared use of the Internet for people with autism to sign language for people who are deaf (i.e., a central feature in effective communication). Blume proposed that, historically, people with autism have been spoken for by others, including parents and professionals, which creates an image of people with autism as being unable to advocate for themselves. Blume suggested that with the proliferation of Internet technologies, this image is changing, with many adults who have autism finding a voice online. The Internet is, therefore, considered to be a useful tool in enabling individuals with autism to share their experiences and perceptions of the label “autism” and have these perceptions and experiences recognized within a professionally dominated discourse of autism.

The potential links with self-advocacy offered by Internet technologies fits well with the ethos of researchers informed by the social model of disability (see, for example, Barnes & Mercer, 1996; Goodley, Armstrong, Sutherland, & Laurie, 2003). Such researchers reject the “personal tragedy” view of disability (Oliver, 1990) in favor of a more emancipatory construction of disability. Although there is some debate concerning the applicability of the social model of disability to learning difficulties (see, for example, Chappell, 1998; Chappell, Goodley, & Lawthom, 2001; McClimens, 2003) and autism, there is a strong focus in literature on issues of self-advocacy by people with learning difficulties and autism. The self-advocacy movement is founded on the assumption of the competence of individuals rather than a focus on deficits and impairments (Chappell et al., 2001).

Ward and Meyer (1999) proposed that the self-advocacy movement for autism has grown since the development of Internet technologies due to the unique embracement of such tools by this population. Ward and Meyer argued that able adults with autism or Asperger syndrome have employed new technologies to frame a new identity that is different to the medical discourse of “disordered” and have moved toward the development of a cultural grouping understanding of the identity of a person with autism. Dekker (2000) reported that a language has developed from such groupings, where members avoid using the term normal to refer to people who do not have autism, preferring instead to use the term neurologically typical. However, Dekker also noted that an autism self-advocacy movement is still in its infancy when compared to the self-advocacy groups of people with physical disabilities, which he reported have a strong disability culture operating.

Recently, authors have also explored the challenge to professional viewpoints and focus on alternative narratives surrounding autism (Smukler, 2005), and learning difficulties–also known as intellectual disabilities in other countries (Finlay & Lyons, 2005). In these papers, people who are labeled with autism or learning difficulties reflected on their experiences. Such researchers develop arguments initially raised by, for example, Blume (1997), who examined the construction of autism. Blume proposed that the neurologically typical (nonautistic) population represents just one of many neurological configurations. Blume acknowledged that such a configuration is certainly the most dominant, but not necessarily the best, argument that will be further explored in this paper. However, Ward and Meyer (1999) commented on the resistance by professionals to relinquish their power to self-advocates and parents of people with autism. Such resistance has the potential to marginalize individual advocates' voices in the wider pool of academic literature. The professionals who are reluctant to share their power with self-advocates typically construct themselves as the “experts” in autism. In the present paper we question and discuss such “expert” status, drawing upon reflections from people with autism.

In light of these proposals, we present some of the findings from a study with an online discussion group, whose membership largely consisted of people with autism and Asperger syndrome. The Internet was considered to be a useful tool in establishing contact with people who have autism. The Internet also ensured that the opinions and voices of people with autism are reflected in the current research. Our aim was to examine the ways in which people with autism discuss their lives and identities in an online discussion group.

Method

We based our methodological choices by carefully considering ethical issues surrounding qualitative research with online communities (see the discussion by Brownlow & O'Dell, 2002). We asked the chat group for permission to join them for an agreed upon period of 4 months, and details about the intended research and the nature of the researchers' membership in the online discussions were shared in an introductory post to the group. This posting identified the researchers as nonautistic and announced their intention to remain silent members of the group. The silent membership of the researchers facilitated the observation of naturally occurring discourse within the group, without the intervention of the researchers posting specific questions and discussion topics. Members were encouraged to voice any concerns that they may have had with the proposed research, and such queries were dealt with by providing extra information about the proposed aims and intended use of the information collected.

The material presented in this paper is part of a larger research project comprised of several online discussion groups. In this paper we focus on a selection of discussion points raised by one discussion group. The quotes provided are selected examples of postings to the group, and they are not intended to provide a comprehensive account of discussions in the group. Indeed, during the period of group membership, contributors to the lists posted on a variety of topics, and many divergent voices were heard in the debates surrounding these. However, what is presented here is a sample of threads that illustrate reflections on “expert” knowledge and identity by the contributors to the site.

The discussion list presented here is an unmoderated chat group with restricted membership. Only members may post, and archives are for members only. All discussions take place in English. Membership in the group is aimed at adults on the autism spectrum, although those who are closely involved with someone on the autism spectrum are invited, a group often identified as autistic cousins by the group members. The group uses the terminology autism and Asperger syndrome interchangeably, with the most common reference being an umbrella term of AS, which encapsulates both. This abbreviation is common among online discussion groups for autism and Asperger syndrome and will, therefore, be used throughout this paper.

At the start of the research, the group consisted of 39 members. However, the number of postings to the group were not necessarily representative of the number of members because some members posted messages frequently, whereas others remained silent. Consequently, the research reflects more postings from certain members of the list who were consistently more “vocal” than others. The quotes are identified by number rather than name to ensure confidentiality and to provide consistency throughout the paper.

Analysis

Initially, all the e-mail discussions from the group were kept in chronological order and read several times. We looked for themes that emerged from the postings. The e-mails were then transferred into Atlas ti (qualitative analysis software), where a more rigorous coding framework could be developed. We explored these emergent themes by using discourse analysis informed by Potter and Wetherell (1987), Burman and Parker (1993), and Edley (2001). We employed a critical form of discourse analysis, where, in addition to identifying underlying themes in the texts, a further exploration of themes was undertaken by examining the sociocultural meanings of autism identified in the discourse. We were, therefore, concerned with the position discourse maintains in the negotiation of social relations, social identities, and cultural values (Fairclough, 2001). The method fits well with our focus on self-advocacy and constructions of autism.

We prioritized and analyzed two themes as being important in addressing our research aims. The analysis is, however, grounded in reflections of the power of the researchers in the identification and analysis of specific themes identified from the texts (Parker & Burman, 1993), and we recognize the influence agency of the analyst in the research process.

The first theme focuses on discussions of “expert” knowledge of autism, specifically questioning who should be accorded expert status with regards to autism. The second theme concerns self-identity with group labels, particularly the comparisons made by group members between people with AS and the “neurologically typicals” (i.e., people without autism). The term neurologically typical (NT) as a group-naming term is commonly used in discussion groups and websites by people with autism.

Theme 1: “Expert” Knowledge of Autism

The broad theme of expert knowledge of autism constitutes several related issues. A key theme in this regard is discussion surrounding who are the experts with regards to AS and, consequently, a contrast between scientific and experiential knowledge of AS. A further theme can be highlighted that contributes to discussions of expert knowledge and focuses on issues of diagnosis. This is evident in postings made to the list surrounding the need for an expert or “official” diagnosis or the reliance on a self-diagnosis of autism.

The first question arising from the texts is “Who are the experts?” Throughout the discussions presented on the website, there is a strong challenge as to who has the most knowledge of AS and, hence, who should be considered the experts. Many of the discussion members are familiar with the work of various experts in the study of autism. Although these particular individuals are given credit for their knowledge of autism, there is still a strong challenge to them being more expert than people who have autism. For example, talking specifically about professional researchers, a contributor commented that:

A team at ___ [place name] University claims it has found that children with the disorder tend to have unusually long ring fingers, compared with their index fingers. It seems this research will be extremely valuable in furlfilling [sic] the dissertation requirements required to give these morons their PhDs. [Person 1]

In questioning the position, and sometimes the usefulness of expert knowledge and research, a clear distinction is made between NTs who are officially recognized by academia as being experts in autism and people who have autism, who should be considered the “official experts.” Members of the chat group commonly prioritized their own (and others') first hand knowledge over the scientific knowledge held by academics.

This theme is further highlighted in the following quote in which a member attends an academic conference (presumably run by recognized experts in the academy). Here, the conference speakers were constructed as being unhelpful in their presentations of autism and unwilling to have their positions challenged by inviting discussion from floor members.

I have attended a conference for AS adults. It was held at ___ [place name] last year. It was about as much use as a chocolate fire guard. We were told that to fit in we had to become more like normal people. Quite how we were supposed to do this remained unsaid. There were some interesting talks by people with AS, but the experts would not answer questions, no time apparently. [Person 2]

From these discussions, a clear theme begins to emerge surrounding who should have the status as expert in their knowledge about AS. The consensus from this particular group was that the people who have the most knowledge about AS and, hence, who should be considered the experts, are people with AS themselves.

In addition, individuals often challenged the dominance of scientific knowledge. This was reflected in discussions surrounding self-diagnosis. Here, the focus was on how individuals know themselves best and, therefore, are able to self-diagnose. Individuals felt they were as much of an expert as the professionals traditionally recognized by academia as being so. However, despite these challenges, there was still recognition for the power of a professional to give an “official” diagnosis, thereby still recognizing the importance of an official diagnosis, for example, “I had confirmed that I fit into the spectrum after a dx. This means I can remove ‘self-dx’ from my description. Maybe it calls for a quick celebration, but I don't count on it” [Person 3].

Throughout the discussions there were unresolved issues as to who truly “knows best” about AS. The people positioned by academia traditionally as experts are not always recognized as such by this group. However, although discussions frequently circled around the argument as to who displays the most important knowledge about people with AS, it remains clear that obtaining and accepting a diagnosis is important to individuals.

Linked to the theme of expert knowledge of autism is the distinction between the labels used for various group members of the chat room, particularly comparisons between members who identify themselves with the label AS, and those NT members of the group.

Theme 2: AS/“Normal” Identities

This theme reflects the use of labels in the list to refer to specific groups of people. All members displayed a common appreciation of terminology referring to the distinction between the groups of people with and those without autism. The group identified as being autistic or having Asperger syndrome were commonly referred to as AS. The group without autism or Asperger syndrome was generically referred to as NT. This is not just a descriptive label but centrally experienced as part of the individual's identity.

The presentation of the discussions surrounding identity with group labels were broken down into two subthemes. First, the terminology used to define the groups is presented, followed by an examination of discussions surrounding notions of cure and becoming NT.

Throughout the discussions in the group, participants used a series of terms interchangeably, particularly high functioning autism, autism, and Asperger syndrome; with AS used as an umbrella term. All of the above-mentioned groups are seen to be different from the group labeled NT. The consequent comparisons between people who identify themselves as AS and people who are NT is a frequent discussion point.

The AS list had a general consensus that people with AS were significantly different from people who do not have AS. This difference is seen as real, and weight is given to the position by reference to neurology. This is reflected in the choice of terminology for people who do not have AS as being NT. Presuppositions for neurological differences are evident throughout the discussions.

The quote presented below exemplifies common occurrences of the voiced differences between NT and AS group members.

I know they are all individuals, and that we shouldn't blame every NT for the action of every other NT … but there is a common thread that ties them together, and it is at the core of their being. It is more than cultural; it is how they are hardwired from the factory. [Person 5]

As can be seen, Person 5 highlighted the very real differences constructed between the two groups and used neurology as the basis for a justification of the constructed differences between AS and NT members. A presupposition as to the neurological origins of the exclusiveness of each group is therefore proposed.

The importance of membership categories and how they are defined was highlighted throughout discussions. It was quite common for the wording of postings to construct people with NT in a negative light contrasted with the positive attributes of being AS.

Humans, even NTs, possess the linguistic ability to express concepts, ideas, and emotions verbally with clarity, but the NT brain seems incapable of actually doing so. They rely heavily on the animalistic means of body language. It's primitive and unnecessary, I think. Further, NTs can't seem to express thoughts completely. They use an irritating form of verbal shorthand, where significant gaps are left to be filled by the listener. It's absurd! If I were to design a communication paradigm to be applied to a sentient race of primates, it would be a lot closer to the AS way than the “normal” way. [Person 5]

Following posts of this nature, some NT members felt that they were being portrayed in a negative light, which, although there was some recognition of such traits in the wider NT population, was felt to be unjust to the NT members. This led some NT list members to question their membership status in the group:

I feel that I live in two worlds. The “NT” but I don't specially care for that term, and the AS b/c of my son…. Do you think I belong on this list? I'm NT and I'm just not sure if I'm in the right place. [Person 6]

However, despite these concerns, some participants in the list felt that the discussions were not aimed at “NT bashing” but, rather, were an expression of views in a safe environment to empathetic others. Here the main rationale was that in order to “accept ourselves as AS, we need to know how we differ from NTs” (this is the general gist we perceived to be representative of several AS individuals. This argument for the highlighting of group differences, often by portraying NTs in a negative light, was further strengthened by the argument that the list is aimed at people with AS and empathetic others.

I don't intend, per se, to put down NTs … primarily I am attempting to show that AS is not a curse or a terrible flaw. There are many good things about being AS, and there are a lot of things that are not good about being NT … so aspies should not be unhappy to be what they are. There is tremendous pressure to make us think that AS is horrible, and NT is the only way to be. Think of the flack you get from the AS community … we get that from the NT community, and the NT community is a lot bigger. [Person 5]

Despite the complexity in distinguishing between terminology referring to people with autism and Asperger syndrome, there remains a general consensus that they as a group are significantly different from people who do not have AS. In addition to being conceptualized as being different from NTs, AS members were vocal in talking about themselves and drawing on a construction of autism that positions people with autism as equal to and in some cases better than NTs.

In light of these often negative perceptions, opinions were commonly expressed that rejected the desire for a cure for AS and hence becoming NT (“normal”). It is recognized that some people with AS would like to be different, but this is largely discouraged:

I can't blame the people that are afflicted with neurotypicality, but that does not mean that I am obligated to change my views to see value in traits I dislike. I am not trying to get them to be anything they are not … my diatribes are directed toward aspies that hate their affliction and would give anything to be normal. [Person 5]

As can be seen from the quote above, the writer holds a negative view of NTs and those AS people who want to be like them. This view of the undesirable qualities of a “normal” NT life is further expressed by a desire not to change through losing some of the positive features of being AS:

Knowing one could never, and perhaps should never, wear the same “clothes” of the other species, then why should those gifted with special abilities and talents choose to abondon [sic] the chance to stand tall among the knowledgable [sic] and the wise in exchange for the life of a number among millions? [Person 3]

Here AS is constructed as a special talent, which should be celebrated. Referring to the two as different “species” again highlights the differences between AS and NT, reinforcing the assumption that AS and NT are distinct groupings. In keeping with the construction of AS in a positive light, the postings also reflect a consistent rejection of viewing AS as a disability:

I won't use the term ‘disability’ to describe AS … I do not feel disabled or impaired. I am not broken and I do not need to be fixed or cured. If I were to become NT, I would not be ‘me’ anymore, and a lot of my good qualities would disappear. [Person 5]

It remains clear that throughout the group discussions, labeling was a central issue. Self-identification with a specific label was a fundamental key feature in many of the interactions, and this remained important whether the label under discussion was AS or NT. Due to the many negative constructions of the label NT, many members who did not have autism rejected this in favor of a more “enlightened” label of “AC,” or autistic cousins, that highlighted the potentially “fuzzy” nature of the boundaries between AS and NT. This is in contrast to the often seemingly mutually exclusive nature of the categories AS and NT frequently portrayed by the group in their discussions.

Discussion

The analysis in this paper presents two of the themes emerging from our investigation in online discussion groups of people with autism. We believe that conducting our study in this manner can provide a potentially rich pool of data that can be used to “give a voice” to otherwise marginalized groups in academic literature and research. It is clear that the adults with autism and Asperger represented here are regarded by their peers as the experts in the field of knowledge about autism and can, consequently, challenge professionals in their online discussions. In addition, some members of the list discussed a diagnostic label of autism or Asperger as something that should be held in a positive light by its recipients, with a general feeling of rejection to being “cured” and striving to become NT.

We believe that the discussion groups provided a useful tool in the current project on research with people who have AS. The findings may be specific to the individual online group represented in this paper; however, the issues raised have resonance beyond the discussions arising in one particular discussion group. The present paper is part of a larger scale research project undertaken with several groups, whose discussion topics covered an array of subjects.

However, although these are unique voices, some broader issues arise from the analysis, particularly the power of the Internet in providing the AS population with a voice. The Internet can provide a tool with which to interact with other people who have AS and, in doing so, create an arena where AS is constructed in a positive light. In constructing an identity in this particular group, the “other” (i.e., NT group) is constructed. This is done by inverting the implicit dominant view that “normal” and, therefore, NT is best. In being the dominant group, AS members do not need to examine the idiosyncrasies typically associated with AS, as the dominant group of NTs traditionally do in an academic arena. The traditional thinking surrounding the boundaries of normality and abnormality are, therefore, questioned and often inverted. The members are positioning themselves as different and often better than the “other” group of NTs.

A further issue arising from this analysis is the firm distinction made between experiential and scientific knowledge. Although scientific knowledge is held to be important to members of this group, as demonstrated by the pursuit of an “official” diagnosis, experiential knowledge is more important in the groups' construction of AS. As researchers, we strive to highlight themes in our analysis that address the cultural and social meanings of the label “autism.” Researchers need to address the very real ways in which labels such as “autism” have a powerful effect on the lived lives of those so labeled. We feel that acknowledging the sociocultural production of labels is key to challenging prejudice and discrimination of those who are neurologically “different.” As nonautistic NT researchers, we feel that we should be involved with giving voice to the marginalized adults with autism, but recognize that we should remain marginal within self-advocacy movements.

We do, however, recognize that the Internet may not be an appropriate tool for all group research. As with all interactions in an online environment, the question arises as to how do you know the “true” identity of your participants, given the anonymity that the Internet may offer. In the current research our aim was to document some of the challenges to the construction of autism and the diagnostic processes and the power given to “experts” in the field. Therefore, proof of a diagnosis was not an overriding concern in our selection of participants, who ranged from those with an official diagnosis, to those self-diagnosed, and NT members of the list; what was important to use in the current study was that participants identified themselves as belonging to a particular group. We propose that the Internet is a useful tool in enabling individuals with autism to share their experiences and perceptions of the label “autism” and have these perceptions and experiences recognized within a professionally dominated discourse of autism.

References

References
Barnes
,
C.
and
G.
Mercer
.
1996
.
Exploring the divide: Illness and disability.
Leeds: Disability Press
.
Blume
,
H.
1997
.
Autism & the internet or it's the wiring, stupid.
.
Bowker
,
N.
and
K.
Tuffin
.
2002
.
Disability discourses for online identities.
Disability and Society
17
:
327
344
.
Brownlow
,
C.
and
L.
O'Dell
.
2002
.
Ethical issues for qualitative research in online communities.
Disability and Society
17
:
685
694
.
Burman
,
E.
and
I.
Parker
.
1993
. (
Eds.
).
Discourse analytic research: Repertoires and readings of texts in action.
London: Routledge
.
Chappell
,
A. L.
1998
.
Still out in the cold: People with learning difficulties and the social model of disability.
In T. Shakespeare (Ed.), The disability reader. Social science perspectives (pp. 211– 221). London: Cassell
.
Chappell
,
A. L.
,
D.
Goodley
, and
R.
Lawthom
.
2001
.
Making connections: The relevance of the social model of disability for people with learning difficulties.
British Journal of Learning Disabilities
29
:
45
50
.
Dekker
,
M.
2000
.
On our own terms: Emerging autistic culture.
Retrieved July 6, 2000, from http://trainland.tripod.com/martijn.htm
.
Edely
,
N.
2001
.
Analysing masculinity: Interpretative repertoires, ideological dilemmas and subject positions.
In M. Wetherell, S. Taylor, & S. Yates (Eds.), Discourse as data. A guide for analysis (pp. 189–228). London: Sage (in association with the Open University)
.
Fairclough
,
N.
2001
.
The discourse of new labour: Critical discourse analysis.
In M. Wetherell, S. Taylor, & S. J. Yates (Eds.), Discourse as data. A guide for analysis (pp. 229–267). London: Sage
.
Finlay
,
W. M. L.
and
E.
Lyons
.
2005
.
Rejecting the label: A social constructionist analysis.
Mental Retardation
43
:
120
134
.
Goodley
,
D.
,
D.
Armstrong
,
K.
Sutherland
, and
L.
Laurie
.
2003
.
Self-advocacy, “learning difficulties,” and the social model of disability.
Mental Retardation
41
:
149
160
.
McClimens
,
A.
2003
.
The organization of difference: People with intellectual disabilities and the social model of disability.
Mental Retardation
41
:
35
46
.
Nakamura
,
K.
and
T.
Junichi
.
2000
.
Remote communication as a help for an autistic child.
Paper presented at the International Society for Augmentative and Alternative Communication conference, Washington DC
.
Oliver
,
M.
1990
.
The politics of disablement.
Basingstoke, United Kingdom: McMillan
.
Potter
,
J.
and
M.
Wetherell
.
1987
.
Discourse and social psychology: Beyond attitudes and behaviour.
London: Sage
.
Smukler
,
D.
2005
.
Unauthorized minds: How “theory of mind” theory misrepresents autism.
Mental Retardation
43
:
11
24
.
Ward
,
M. J.
and
R. N.
Meyer
.
1999
.
Self-determination for people with developmental disabilities and autism: Two self-advocates' perspectives.
Focus on Autism and Other Developmental Disabilities
14
:
133
140
.

Author notes

Authors: Charlotte Brownlow, BSc (C.Brownlow@londonmet.ac.uk), Lecturer, Department of Psychology, London Metropolitan University, Old Castle St., London E1 7NT. Lindsay O'Dell, PhD, Senior Lecturer, School of Applied Social Sciences, University of Brighton, Falmer, Brighton BN1 9PH. United Kingdom