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We, an international group of autistic scholars of autism and neurodiversity, discuss recent findings on the origins of the concept and theorising of neurodiversity. For some time, the coinage and theorising of the concept of 'neurodiversity' has been attributed to Judy Singer. Singer wrote an Honours thesis on the subject in 1998, focused on autistic activists and allies in the autistic community email list Independent Living (InLv). This was revised into a briefer book chapter, published in 1999. Despite the widespread attribution to Singer, the terms 'neurological diversity' and 'neurodiversity' were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the 'Institute for the Study of the Neurologically Typical'. Recently, Martijn Dekker reported a 1996 discussion in which one InLv poster, Tony Langdon, writes of the 'neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise'. Going forward, we should recognise the multiple, collective origins of the neurodiversity concept rather than attributing it to any single author. This letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of 'neurological diversity' was being used years earlier than previously thought. 'Neurodiversity' means the same thing as 'neurological diversity' and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people. [ABSTRACT FROM AUTHOR]

Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. [ABSTRACT FROM AUTHOR]

It was recently argued that autism researchers committed to rejecting ableist frameworks in their research may sacrifice "scientifically accurate" conceptualizations of autism. In this perspective piece, we argue that: (a) antiableism vs. scientific accuracy is a false dichotomy, (b) there is no ideology-free science that has claim to scientific accuracy, and (c) autism science has a history of false leads in part because of unexamined ableist ideologies that undergird researcher framings and interpretations of evidence. To illustrate our claims, we discuss several avenues of autism research that were promoted as scientific advances, but were eventually debunked or shown to have much less explanatory value than initially proposed. These research programs have involved claims about autism etiology, the nature of autism and autistic characteristics, and autism intervention. Common to these false leads have been ableist assumptions about autism that inform researcher perspectives. Negative impacts of this work have been mitigated in some areas of autism research, but these perspectives continue to exert influence on the lives of autistic people, including the availability of services, discourses about autism, and sociocultural conceptualizations of autistic people. Examining these false leads may help current researchers better understand how ableism may negatively influence their areas of inquiry. We close with a positive argument that promoting anti-ableism can be done in tandem with increasing scientific accuracy. [ABSTRACT FROM AUTHOR]

Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the 'nothing about us without us' slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of 'cutting our own keys', to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself. A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) – in truly 'neurodiverse' teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways. [ABSTRACT FROM AUTHOR]

Introduction: While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, and below in status (stigmatization). Method: This mixed-method study aimed to investigate how autism researchers construct autistic people and autism research, and to investigate whether including autistic people more in research relates to lower ableism in narratives about autistic people. We used a survey with autism researchers (N = 195) asking five open-ended questions about autism and autism research, as well as demographics, career length, contact with autistic people (familial and non-familial) and degree to which researchers involve autistic people in their research. We used content analysis to categorize narratives used by autism researchers and cues for ableism (dehumanization, objectification, and stigmatization). We then used binary-logistic regression to identify whether narrative or higher inclusion of autistic people predicted fewer ableist cues, controlling for career length and connections to autistic people. Results and discussion: Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher’s perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles “autism” versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of “autism” when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing “autistic people,” despite autism only existing within the context of autistic people. [ABSTRACT FROM AUTHOR]

Autistic people report greater comfort socialising and easier communication with each other. Despite autism being stereotypically associated with lack of social motivation, an autistic community has been described briefly in the literature but is not well understood. Autistic community connectedness may play a role in promoting wellbeing for autistic people. This qualitative study involved interviewing autistic individuals (N = 20) in-person, via a video-based platform, a text-based platform or over email to investigate autistic community connectedness. Critical grounded theory tools were used to collect and analyse the data. There were three elements of autistic community connectedness: belongingness, social connectedness and political connectedness. Belongingness referred to the sense of similarity that autistic people experienced with each other. Social connectedness referred to specific friendship participants formed with other autistic people. Political connectedness referred to a connectedness to the political or social equality goals of the autistic community. Participants described the benefits of autistic community connectedness as being increased self-esteem, a sense of direction and a sense of community not experienced elsewhere. Lack of connectedness involved ambivalence with an autistic identity and/or feelings of internalised stigma. Experiences of autistic community connectedness may have implications for autistic people's wellbeing, as well as how they cope with minority stress. A sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society. [ABSTRACT FROM AUTHOR]

There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article. Autistic research participants consider their autism to be value neutral – akin to any other feature like race or hair colour. Participants feel that society sees their autism as being a bad trait to have. Participants struggled with the tension in how they see themselves, versus how they believe society sees them. Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way. Participants use the word "autistic" to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative. [ABSTRACT FROM AUTHOR]

There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as "scientifically-sound" by virtue of their perceived "objectivity." Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of "leaning-in" as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work. [ABSTRACT FROM AUTHOR]

There is an increasing focus on research exploring autistic communication and community. In this review, we systematically collate and analyse how autistic adults describe their experiences of other autistic people and the relationship this has with their Quality of Life (QoL). Fifty two qualitative papers were analysed using thematic meta-synthesis. Results found many experiences of other autistic people were positive and were associated with improved QoL across a range of domains. The heterogeneity of the autistic experiences described indicates a need for further research to explore which factors predict a positive impact on QoL. Analysis also highlighted a paucity of data on autistic people with co-occurring intellectual disability in relation to this phenomenon. Implications for research and practice are discussed.Research has suggested that autistic people enjoy spending time with other autistic people and find them easier to talk to. We wanted to find out what autistic people say about spending time with other autistic people and whether this makes their life better. We found 52 papers which described this and reviewed what they found. We found that many autistic people had positive experiences of spending time with other autistic people and these experiences had positive impact on their lives in a range of different ways. The papers did not tell us whether this also happens for autistic people with a learning disability. More research is needed to find out more about why spending time with other autistic people helps some autistic people. [ABSTRACT FROM AUTHOR]