Research with adults with Asperger’s syndrome—participatory or emancipatory research?

Introduction

In this paper, I discuss a research project, which I conducted between July 2009 and July 2012, with a group of adults with Asperger’s syndrome. I focus on the emancipatory aspirations and examine what they have achieved through the process and outcomes of the research. I discuss how a commitment to a value position consistent with the social model of disability informed the research process. I also consider my own role as a researcher who does not have Asperger’s syndrome and discuss how this influenced the research. To put it in another way, I examine whether my role as a non disabled researcher in the research prevented it from being emancipatory research.

Summary of project

The research project involved a group of three adults with Asperger’s syndrome working with me as co-researchers. We wanted to determine what other adults with Asperger’s syndrome thought about the support they believed they needed to live their lives. Every aspect of the research was agreed by the adults with Asperger’s syndrome and myself. We decided on the specific focus of the research, designed a questionnaire for other adults with Asperger’s syndrome, analysed the results, designed questions for focus groups and individual interviews based on the analysis of the questionnaires, analysed the data from the focus groups and interviews and held a conference where the group and myself disseminated the findings prior to any publication. The group met as a whole group 32 times over the 3-year period, usually for whole days. It is not my purpose in this paper to describe every aspect of the research as space will not allow this. Rather, I will examine how the group was formed, the questionnaire formation, how we analysed the data from the questionnaire together with the role that I played and the implications of this and what the group members felt about the process and how we worked together.

Emancipatory and participative research

Zarb (1992: 127) drew a distinction between emancipatory and participative research with the test as to whether any research is emancipatory being whether it meets the ‘two primary principles of “empowerment” and “reciprocity”’. (Oliver, 1991: 111) adds an additional principle to Zarb’s of ‘gain’. I had an aspiration to work with adults with Asperger’s syndrome on a piece of research in a way which was empowering, reciprocal and which they gained from, although at the outset, I was not sure how this was going to work. Chappell (2000) indicates that it is the design and intentions of research that are defining elements of emancipatory research. I was committed to designing the research with the co-researchers in a way which transformed the ‘social relations of research production’ (Oliver, 1992). By this, I mean that I acknowledged the expertise of people with Asperger’s syndrome on their own experience and lives. I could not possess this in the same way being a researcher who does not have Asperger’s syndrome. I was also concerned to acknowledge the role that people with Asperger’s syndrome had in the research and give them the credit for this. I wanted to make decisions about all aspects of the research in partnership with adults with Asperger’s syndrome. In other words, I was concerned at addressing the power differences that existed between myself as an academic employed by a University and adults with Asperger’s syndrome who had all experienced discrimination in their lives including in employment and education contexts. Barton (2005: 318), when commenting on Oliver’s paper of 1992, states that Oliver was calling for a ‘fundamental shift in the ways in which we think about research including the purposes, process, and outcomes of these activities’. Emancipatory research is achieved when the social relations of research production are more enabling or ‘emancipatory’. However, emancipatory research has also been understood as being research in which disabled people are ‘in charge’ rather than working in partnership with a non disabled researcher (Chappell, 2000). Barton (2005: 321) also discusses emancipatory research in the context of ‘disabled people through their organisations, not only controlling the research agenda but also the whole question of dissemination of research findings’. Based on this criteria, as a neuro typical person (a person who does not have Asperger’s syndrome), I can only ever hope to achieve participatory research with people with Asperger’s syndrome even though the process may be enabling and reciprocal and the outcomes empowering in terms of gains. Does this mean that the experience of the process as well as the outcomes for the adults with Asperger’s syndrome cannot be emancipatory? Johnson (2009: 251) infers that the difference between ‘emancipatory’ and ‘participative’ research is concerned with how much power the disabled participants have within the ‘research framework’. Does this mean that potentially the research could be emancipatory even though it involved me as a non disabled researcher?

Barton (2005: 318) highlights that disabled people and their organisations are asking for ‘disability research’ to be ‘useful’ as well as ‘relevant’. As he explains, this means that research is concerned with ‘social justice, equity and citizenship’ as well as being concerned with ‘the struggle for change and thus a critical engagement with, for example, material and ideological barriers to participation’. For me, this meant working with people with Asperger’s syndrome who acknowledged my difference in the way I think and work and learning from them how best to engage and work together. It also meant working in a way with them that was enabling to them and provided a positive experience of the process. It meant choosing to research an area that could potentially bring benefits to other people with Asperger’s syndrome and their families/carers. Johnson (2009: 252) in discussing research with people with a learning disability has defined one of the criteria for ‘inclusive’ research as being ‘The research question, problem or issue must be one that is owned (though not necessarily initiated) by people with intellectual disabilities’. It should also ‘further the interests of disabled people: non disabled researchers should be on the side of people with intellectual disabilities’.

I had read of examples where service users were involved in projects that were not research based but were on the surface examples of a participative approach. The authors highlighted issues of service users being over ruled in decisions (Johnson, 2009: 77; Walmsley and Johnson, 1998), subtly controlled in meetings (Hodge, 2005) and only listened to when it was convenient to those ‘in charge’ (Dow, 2000). Ward and Gahagan (2012: 182), when talking of doing research with older people, speak of the danger of involvement being superficial and the challenge of moving beyond the ‘platitudinous’ claim to ‘hear their voice’. However, Cotterell et al. (2008) show how a participatory approach to research can result in benefits for patients with cancer, and Cotterell (2008) details how service users were involved in all stages of a research project, particularly exploring the value of their involvement in data analysis. The importance of the process was evident from Cotterell and other studies although I noted that some studies used ‘advisory’ or ‘reference’ groups of service users and their views ‘informed’ decisions rather than the decisions being made in partnership with service users (Rhodes et al., 2002; Wright et al., 2006). I wanted to set up a group of adults with Asperger’s syndrome who worked together with me on all aspects of the research. My aspirations were to conduct the research within an emancipatory framework.

As well as the process being important, I was also aware of the importance of outcomes for research studies or as Barton framed it, the research’s ‘usefulness’. I wanted to conduct a study, which I thought could be helpful to people with Asperger’s syndrome and the people who may support them, although I knew that I had no way of guaranteeing what any outcomes might be. I decided that a suitable topic was how adults with Asperger’s syndrome want to be supported. Johnson (2009) allowed for the original idea to come from a non disabled researcher rather than from a disabled person or organisation but for the research to be emancipatory, it had to be ‘owned’ by adults with Asperger’s syndrome.

Why adults with Asperger’s syndrome?

Before examining the actual research, it is useful to have an understanding of the challenges of working with a group of adults with Asperger’s syndrome. Part of my motivation for choosing an emancipatory methodology was to demonstrate that adults with Asperger’s syndrome could indeed work in a group situation on a lengthy piece of research and add their own insights to the process. There are three ways of looking at the challenges that the proposed research might have. First, there were challenges to me as I am neuro typical and cannot know what it is like to have Asperger’s syndrome in the way that the group does. Second, there are challenges to the individuals with Asperger’s syndrome in the group to work together as a group and third, there is a challenge presented to all four of us working together and understanding each other.

Asperger’s syndrome has been the subject of much debate, and the perceived differences of people with Asperger’s syndrome are well documented. According to a lot of literature that discusses Asperger’s syndrome, the reason that the proposed research might be difficult for people with Asperger’s syndrome is linked to the way that people with Asperger’s syndrome are reported to think. Hans Asperger first recognised what came to be known later as Asperger’s syndrome in 1944 although it was Wing’s work that brought this to the attention of a professional audience (Whitman, 2004: 17). Wing (1996: 20) reports that one of the features that Asperger selected as being a part of the differences he observed in some children was a lack of two-way conversation, indicating the difficulty that adults with Asperger’s syndrome might experience working together in a group situation. Asperger’s syndrome is understood to be a type of autism and as such people who have Asperger’s syndrome are said to experience a deficit in the three areas of communication, social interaction and imagination. This is commonly referred to as the ‘triad of impairment’ and refers to all individuals with autism (Wing, 1992). To be diagnosed with Asperger’s syndrome, an individual must have ‘at least two impairments in social interaction and at least one in behaviour/interests and activities’ (Yapko, 2005: 25). Diagnostic tools used to determine whether an individual has Asperger’s syndrome or not explore amongst other aspects, an individual’s ability to take turns in conversations, initiate or sustain conversations with others, hold conversations, which are not about an individual’s ‘special interest’, and consider the emotional impact on the listener of what is said (Attwood, 2007: 50). An inability in these areas can indicate that a person does have Asperger’s syndrome.

Wheeler (2011: 847) proposes a different way of understanding Asperger’s syndrome and proposes that it is a ‘difference’, not a deficit. This is the position that informed my approach to this research. He writes:

‘A conceptualisation of Asperger’s syndrome, which takes account of the complex interaction between the individual and society, and accounts for the complex social, perceptual and behavioural characteristics, which vary greatly between individuals with Asperger’s syndrome, is the idea that Asperger’s syndrome is not a deficit, not a mental disorder, but rather a perceptual difference.’

The understanding that adults with Asperger’s syndrome think differently rather than in an inferior way to people who are neuro typical was key to the way I approached the research. I viewed the principal challenge as being the challenge to myself to try and understand better the people who I was to work with. I believed that I could create barriers to communication by not understanding and communicating inappropriately with the group. This position was informed by the social model of disability, which had greatly influenced my thinking as a social work student when I was introduced to the work of Michael Oliver.

Social model of disability

The social model of disability challenges the dominant view of disability as being due to individual’s impairments and instead highlights the role of ‘disabling environments’. This model has been part of the challenge to society by disabled people, and more positive images of disability have been proposed ‘through the development of a politics of personal identity’ (Campbell and Oliver, 1996: 20). I was aware of Shakespeare’s criticisms of the social model of disability and his belief that ‘people are disabled by society and by their bodies’ (Shakespeare, 2006: 2). I was also mindful of Shakespeare’s assertion that the social model of disability has ‘largely failed to produce good empirical research, because it relies on an overtly narrow and flawed conception of disability’ (Shakespeare, 2006: 9). Oliver and Barnes (2012: 24) refute this claim arguing that debates on disability do cite the social model, and it has influenced current government-initiated research into disability. However, the debate about the role of individual ‘impairment’ and ‘disabling environments’ were reminders to me that I needed to understand both. As already noted, I chose to use the word ‘difference’ rather than ‘impairment’ when talking about people with Asperger’s syndrome as I felt that this did not communicate value-laden assumptions about people with Asperger’s syndrome but did acknowledge that they do think in a different way from people who are ‘neuro typical’ such as myself. In the case of people with Asperger’s syndrome, it is not their bodies that are regarded as ‘impaired’, but their minds as seen above. I wanted the approach I took to working with adults with Asperger’s syndrome to take account of the different ways in which they think [as well as individual differences between the group members] and so not deny the existence of difference and at the same time to create an environment, which was enabling rather than disabling. Hacking (2010: 264) highlights the difficulty of neuro typical people in understanding people with Asperger’s syndrome, even when they are quite articulate. The challenge was to design research in such a way that took account of differences. Although I had an academic understanding of what these differences are, I also knew that people with Asperger’s syndrome are very different from each other and did not want to make assumptions about how the research should be conducted. My value position in relation to people with Asperger’s syndrome led me to aspire to an emancipatory or participatory research methodology as I wanted to be led by them in understanding how best to work together.

How the research group was formed

In retrospect, the forming of the research group was in many ways the most important part of the research. However, I did not know any possible participants myself so relied on introductions from others. The proposed research was to take place in Nottinghamshire, a County in England, and the local authority gave me some very useful introductions to individuals with Asperger’s syndrome and a support group for adults with Asperger’s syndrome and their carers. My aim was to work with a group of adults with Asperger’s syndrome on research in which they took as active a role as myself but I had to rely on my own knowledge and skills to form the group and get to the stage where we could work in partnership. I attended the support group a number of times and outlined my idea for research and asked if anyone wanted to take part in this project with me. I also met with two individuals who the Council’s specialist Asperger’s team thought would enjoy being a part of my group. One of these joined the research at the beginning and the other about 6 months later. My reception at the support group was positive, and several people expressed a desire to be a part of the research. I agreed a date, time and venue for the first meeting. I was very aware that some adults with Asperger’s syndrome do not like to have demands put on them to commit to a particular activity and so rather than ask people to agree to be a part of the research group at the support meeting, we agreed a date and time where everyone in the group could attend, and it was left to them to come if they chose to. I was not certain if anyone would attend from the support group or if they would all attend. I was not sure at that time what would be an appropriate number of people to be in the group, and in fact, even if I had, this would have been difficult to achieve with the invitation to being left so open.

At the first meeting, two adults with Asperger’s syndrome attended, a white man in his forties and a young white woman in her twenties. Although I was initially a little disappointed that the group was not larger, time proved that a small group worked very well, and when the third person joined (a young white woman in her early twenties), it felt to me that this was a very good size for the group. The group later chose that I use their names in any publications as they want to be identified with the project-so; the group consisted of me, Katrina Fox, Duncan MacGregor and Laura Hickman.

Group rules of engagement

As part of the ethical approval, I had to address how I would engage with the group, but in reality, I just was not sure how this was going to work. I cited my own experience as a social worker as well as stating that I was aware that different people with Asperger’s sydrome would have different communication preferences and that I would conduct any meetings in a way that met these needs. I knew that my best strategy was to listen to what the people in the group said and not to try and use models of engagement that had worked for me in the past. I wanted to work in a way which was ‘autism friendly’ without being totally sure what that was in a group situation. What I found is that Katrina, Duncan and Laura are three very different individuals with very different needs as well as strengths. I wanted to discuss with them at the beginning how we could work together. Through discussion, it became clear that the best way to work with the group was to let each play to their strengths and not put any demands on them that they were not comfortable with. As I have a background in working with people with a learning disability and had worked to support adults with a learning disability to take on roles of responsibility, it felt natural to me to encourage one of the co-researchers to chair our meetings. I quickly learnt that this was not the right approach to take. I learnt from the group members that this would indeed be an unwelcome approach and in fact would ensure that the group was unsuccessful! My initial task with the group was to find a way of working, which suited their skills, preferred ways of communication and perhaps more importantly did not raise any anxieties. This way of working evolved over time. Initially, I recorded their views on flipchart paper and turned them into typed records of the meetings, which I then emailed to the group after the meeting for their comments and agreement. As I and the group became more confident, I started to take my laptop into sessions. Initially, I recorded what they wanted to say and checked out with them if they were happy with my recordings and amend as appropriate. After a while, I asked the group members to take it in turns to type the groups’ thoughts and decisions directly onto the laptop so this took away my interpreting what they wanted to say and checking it out with them. In this way, although it was me who actually facilitated the meetings, I was confident that they were taking roles they were happy with rather than be shaped by what I had previously considered to be the best way to practice. I learnt a valuable lesson about empowerment at that point-empowerment is not about facilitating people to take on roles that others think they should have, but about listening and encouraging people to take on roles that they are comfortable with and which enable them to use their skills without feeling threatened. This way of working, although it seems a little tentative and ‘trial by error’, was totally led by the belief that the group could work well together providing it was facilitated in a way which was helpful for all. For the research to stand any chance of being emancipatory, the environment for working together had to be enabling. It would not be enough to be democratic in decision making, although this was obviously important, but decisions had to be based on good working relationships and the freedom for everyone to be themselves and for the unique way that each person thinks to be seen by the group as being an advantage, not something to overcome.

At the first meeting, I asked the group what they wanted to call themselves. They decided on ‘The Asperger’s Consultation Group’. We discussed how we were going to find out what other adults with Asperger’s syndrome thought about the support that they were receiving and thought they needed. The group wanted to reach as many people with Asperger’s syndrome living in Nottinghamshire as possible, and we decided to collect data by means of a questionnaire. The following principles to be applied to the questionnaire were agreed by the group:

Language will need to be clear and direct.

The questionnaire

We decided we would design a questionnaire and use this over the internet as well as give people the choice to use it electronically as a hard copy or use it as a basis to interview people if they would prefer this. We discussed the focus of the questionnaire. I was concerned with not leading in a particular direction but with finding out what the group thought the priority areas were within the scope of our enquiry. I asked what issues the group thought were important in relation to services and made a list of them all on flipchart paper. We ended up with quite a long list, and I thought this was too large a scope for one questionnaire. I encouraged the group to reduce the list by asking them what were the most important and asked them what they wanted to achieve by asking questions on the topics they had identified. This was not a very successful strategy on my part so I tried a different tack. One of the areas identified that the group were not happy with was in relation to the benefits system in England. Although one member of the group thought that benefits were a really important area, when I asked – ‘what are the topics which you think we are most likely to be able to influence when we have finished our research?’, the group reflected on the topics they had identified. They thought that the benefit system was something that we were unlikely to be able to influence and so decided to concentrate on topics that were connected to local services. This approach was better as it encouraged the group to think ahead to any findings and whether or not they thought there was any potential for change. This became typical of the role that I played in the group as I did influence their decision making by asking questions for them to consider. (Much later on, the group gave each member a ‘nickname’, and they chose to give me the name ‘navigator’. I was very pleased with this but also felt it was an accurate description of the role that I did have within the group). Diagnosis was the topic that the group was most interested to explore, and so we made this the first topic looked at in the questionnaire after a more general section asking for personal details such as age group and gender. The group felt that everything else follows on from diagnosis. We spent quite a few sessions deciding on the categories for the questionnaire, the actual questions under each section and the order of the sections. The discussion was always focused around the experience of the members of the group and what was important to them. The following sections were agreed for the questionnaire, indicating the areas that the group felt they wanted to explore in relation to how people felt supported:

About you

Each section asked questions about how services had helped, if they had, what had been helpful and what not and what else could be done to offer support.

Piloting the questionnaire

We wanted to ensure that the sections we had chosen were relevant to other people with Asperger’s syndrome and also that the wording was understandable and not patronising in any way. We agreed that we would each take a copy of the questionnaire away and ask other people to look at it to see if the wording was understandable and was pitched at the right level. Between us, we consulted other adults with Asperger’s syndrome, both individually and as part of a support group and carers and professionals who support adults with Aspergers. This was a very useful process as it did highlight some issues for us to address. The group discussed the feedback and decided whether to change the questionnaire in response. In all cases, we decided to amend the questionnaire as the group agreed with the points made. As one of the main concerns in our design of the questionnaire had been to make it ‘autistic friendly’, we took particular note of any suggestions in relation to the wording. We had a section, which we had called ‘navigating the outside world’ as the group had thought this accurately described what they had to do, and this had also made sense to other people with Asperger’s syndrome who talked about needing an internal ‘satnav’ in order to survive in the community. However, it became clear in the feedback that this did not make sense to everyone with Asperger’s syndrome so we changed it to ‘dealing with the outside world’ as this seemed to be more universally understood.

Two hundred letters were sent out to adults with Asperger’s syndrome living in Nottinghamshire, and the questionnaire was also put on line so people could respond in a way they felt most comfortable with.

Data analysis

Although I was disappointed with the number of questionnaires that were returned, as we only had 19 responses out of more than 200 contacts, there was still a lot of data to analyse. My concern was how to do this with the group as like every other stage of the research, I wanted this to be done collaboratively. I had read of other research where service users had analysed the data themselves (Cotterell, 2008), and this seemed to have been achieved with people looking at the data outside of meetings and coming back with ideas on how to analyse it. I posed this for consideration to the group but we decided to work collaboratively and analyse the data as a group. We decided to look at all the answers to each question and discuss each in turn. We read each response, and the co-researchers decided what ‘message’ it contained. This was achieved by summarising and recording each statement. If another answer seemed to be saying the same thing, we did not write a new summary as we felt that this was already accounted for under the pre-existing category. Some of these categories used the words of the respondent, and others used the experience and understanding of the co-researchers to interpret what was being said, for example ‘understanding neuro typical behaviour’. In this way, we built up a list of what we then called ‘themes’. Each time we met to look at new responses, we used these themes to categorise the responses and added further ones to cover new messages, which we felt were not already covered. Some questions were answered very logically by the respondents while others were felt by the co-researchers to have missed the point of the question, and so we decided to discount these responses. This of course was a decision with consequences for the analysis as there may have been further themes that could have emerged that we did not identify. I could have asked that we also look at what messages these responses contained but did not do so. It was apparent to me that the group was operating in a very literal manner, and this did not allow for responses that were outside the intention of the original questions. I did not feel it appropriate to influence the categorisation in this way as this is how it made sense to the group and that is the perspective that I wanted for the analysis. If I had over ruled this decision, I would have been imposing my own neuro typical view. The whole point of conducting the research in the way that we did was to gain the perspective of adults with Asperger’s syndrome. This was not a negation of my expertise as a researcher as might be supposed, but a utilisation of my knowledge of the principles of participatory and emancipatory research and of the different way that people with Asperger’s syndrome think. Baron-Cohen (2004) has written about how people with Asperger’s syndrome systemise information, and I realised the importance of not imposing my much less systematic way of thinking on the co-researchers.

Different co-researchers had different preferences as to how the data analysis was presented. I suggested that we use different coloured highlighters to represent the different themes but this was not thought to be helpful by the group. Two of the group wanted the responses to be listed under the different themes whereas one member wanted the response to be categorized numerically. In order to make sense of the data, this person worked on the data outside of the group and assigned each theme a numerical value and placed it in a spreadsheet. For this particular member, this was an important process as it made the information more accessible to him. It was important that the way the group worked allowed for differences between the group members and not assume that there was one ‘right’ way to work together.

As we were working on the formation of the themes, we discussed and made a note of what we wanted to find out more about in the next phase of the research. Diagnosis was a recurring theme that we discussed. Each co-researcher had a very different experience of and reaction to their own diagnosis, and they discussed this with each other, sharing their own experiences as they read the responses to the questionnaire. Many responses had resonance for the group for example when respondents said that they had felt misunderstood, the group shared examples of when they themselves had also felt misunderstood, which was sometimes in relation to humour and sometimes when they had been misinterpreted as being rude by others.

Discussion about identity within the group

The discussions in the group relating to the data analysis and what we wanted to focus on in the next phase of the research gave rise to discussions about how the co-researchers felt about their own identity. It was clear that for at least one member, having being diagnosed with Asperger’s syndrome had been a very negative experience, and this was often expressed with regret and a sense of loss. I had explained what the social model of disability was at the formation of the group and that this was the approach that underpinned the way I tried to work. I had also explained that they were the ‘experts’ and that my expertise came in the research process and in working with groups. This distinction had pleased the group. We had many discussions about what it meant for the co-researchers to have Asperger’s syndrome and about ‘difference’ as opposed to ‘deficit’. These discussions were important to individual members as they partly used the group to explore for themselves what it meant for them to be an adult with Asperger’s syndrome. It was inevitable that the discussions that took place around the experience of the co-researchers informed how they wanted to conduct the research. I felt this to be entirely appropriate as there was a growing understanding in co-researcher in relation to what it meant to them to be an adult with Asperger’s syndrome. The discussions that were based on the data generated new areas for exploration and gave a richer understanding of others with Asperger’s syndrome.

What the group members felt about the process

In June 2012, the group and I held a conference to tell people about the research and also what the group had achieved. We wrote a script for the co-researchers to follow. This script provides useful insights into how the group members perceived the process. With permission from the group, I will use some of what they said to address the three criteria identified at the beginning of the article for emancipatory research; empowerment, reciprocity and gain.

Beresford and Croft (2001) when making the point that much participation is about ‘data extraction’ rather than ‘empowerment, that is to say, increasing their personal and political power’ give us a criteria with which to measure this research. Was it about just getting results or was it also about providing a process, which increased the group members’ power? Given this definition, the most notable ways in which the group experienced empowerment was in regard to the creation of an environment in which they were able to explore their identity and consider their own experiences with each other. Laura said:

‘I think most of all though I have learned to have a positive outlook on life with Asperger’s and that’s I think kind of a skill I’ll hopefully have for life’.

Katrina states:

‘It was through working on this project and meeting so many people with Aspergers, all of whom had different skills and abilities that I began to understand that all people with Asperger’s are different, I am not supposed to be a certain way. By learning to view myself as an individual I have allowed myself a new freedom and my new realistic identity is forming. I can now do the things that I did before diagnosis without feeling guilty. If I hadn’t joined this group and learnt this lesson I honestly don’t know where I would be right now.’

Reciprocity in research is defined by Maiter et al. (2008: 305) as being ‘an ongoing process of exchange with the aim of establishing and maintaining equality between parties’.

Katrina states:

‘Prior to joining this group I believed that I couldn’t work well with other people. Every time I had tried to work with others I had failed be it in school, work, anywhere. Working with other people had always led to me getting bullied because of my intelligence or people in the group have put so much pressure on me to do so much that I then become incapable of functioning and have to quit. I had no experience of the joys of being part of a group until joining this one. Laura, Duncan and Jackie have shown me that I have a place within a group. A place where my intelligence will be respected but not taken advantage of. For the first time in my life I feel like an equal and this has allowed me to reach my full potential’.

Duncan states:

‘I found working together not to be a problem. There were no problems regarding our position in the group since we all played to our strengths. Having Asperger’s didn’t mean that I could not work well in a team.’

Katrina sums up what she gained from the other members of the group:

‘Laura and Duncan have shown me a lot of respect and just allowed me to be myself. They have shown great empathy, something which those with Aspergers are reportedly unable to do. Jackie has restored my faith that NTs (neuro typicals) can gain a good understanding of Asperger’s and apply it, she has shown me that not everybody makes assumptions.’

Laura also speaks of how she experienced the group:

‘Duncan and Katrina are two people I can honestly say have become special to me. I have never met any two people who have been through such a lot to get to where they are now. As well as coping with their condition they have tried to get on with their life as normal as possible by trying work, university and throughout this project they have influenced me as people to look up to in my life…. I will treasure this experience for ever and continue to work hard within this group. It has been a wonderful experience to meet Jackie as well. A professional who actually does understand Asperger’s. It has been an emotional experience because there are so many things that are close to home that we all share together’.

In terms of gain, the group members all reported personal gains for them as a result of taking part in the research. Laura states:

‘I have gained many skills throughout this work. My social skills have come on leaps and bounds. I think most of all though I have learned to have a positive outlook on life with Asperger’s and that’s I think kind of a skill ill hopefully have for life. I now feel much more confident as a person with Asperger’s.’

Duncan states that he has learnt that ‘I have to harness my strengths and not dwell too long on my weaknesses’.

Katrina puts the gains she experienced in the context of the loss she experienced when she was diagnosed with Asperger’s syndrome:

‘This project has been the perfect outlet for me. It has helped me to rediscover all the skills I had forgotten about and has reignited my passion to help others. I got so lost during my diagnosis that I felt useless and I lost the belief I had in my abilities. Prior to diagnosis I had a clear idea what I wanted in life, I wanted my name in print, I wanted to help people and I wanted my voice to be heard. I wanted to influence people for the greater good. In the dark times after my diagnosis I felt all these things were unachievable and I was left feeling empty. Then Jackie came along with this project which required me to dig deep and bring to the surface all those skills that lay forgotten.’

Conclusion

Referring back to the principles outlined in the beginning of the paper by Zarb and Oliver of emancipatory research being concerned with empowerment, reciprocity and gain, I want to argue that these were met in this research. Certainly, Katrina, Duncan and Laura felt that they were and as stated testified to this fact at the conference we held to tell people about the research and what we had achieved together. The group in their naming of my role as the ‘navigator’ confirm the importance of this role, which alongside their own enabled the research to take place. The group want to continue their work beyond this piece of research and so have been empowered to do so by the positive experience of being a part of it. The process of the group working provided a safe environment in which to explore issues of identity and share experiences. Surely, this is what emancipatory research aspires to achieve. This was achieved through the partnership of adults with Asperger’s syndrome working with a neuro typical researcher. It took all the researchers together to make this research such a positive experience for us all.