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1.
Autism ; : 13623613241255811, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38829019

RESUMO

LAY ABSTRACT: 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.

2.
Autism ; 28(6): 1591-1594, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38470140

RESUMO

LAY ABSTRACT: 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.


Assuntos
Teoria Psicológica , Humanos , História do Século XX , Neurociências
3.
Autism ; : 13623613231222656, 2024 Feb 04.
Artigo em Inglês | MEDLINE | ID: mdl-38311602

RESUMO

LAY ABSTRACT: Although research has the potential to improve autistic people's lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people's lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people's knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people's research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.

4.
Autism ; : 13623613231220418, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38230649

RESUMO

LAY ABSTRACT: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence.

5.
Autism ; 28(3): 786-792, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37212144

RESUMO

LAY ABSTRACT: 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.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtornos Globais do Desenvolvimento Infantil , Criança , Humanos , Comunicação , Pais
6.
Autism ; : 13623613231219743, 2023 Dec 27.
Artigo em Inglês | MEDLINE | ID: mdl-38149622

RESUMO

LAY ABSTRACT: The "double empathy problem" refers to breakdowns in communication and understanding that frequently occur between autistic and non-autistic people. Previous studies have shown that autistic people often establish better rapport and connection when interacting with other autistic people compared to when interacting with non-autistic people, but it is unclear whether this is noticeable to non-autistic observers. In this study, 102 non-autistic undergraduate students viewed and rated video recordings of "get to know you" conversations between pairs of autistic and non-autistic adults. Sometimes the pairs were two autistic people, sometimes they were two non-autistic people, and sometimes they were "mixed" interactions of one autistic and one non-autistic person. Observers tended to rate non-autistic participants and their interactions the most favorably, but-consistent with the "double empathy problem"-they rated mixed interactions between autistic and non-autistic people as the least successful. They also perceived that only non-autistic people disclosed more when interacting with a non-autistic conversation partner. Autistic participants' partners in the conversations tended to evaluate them more favorably than did outside observers, suggesting that personal contact may facilitate more positive evaluations of autistic people. Furthermore, observers expressed less social interest in participants than did the autistic and non-autistic participants in the interactions. Together, these findings suggest that non-autistic observers both detect and demonstrate some aspects of the double empathy problem.

7.
Front Psychiatry ; 14: 1244451, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37743979

RESUMO

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) anti-ableism 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.

9.
Autism Adulthood ; 5(1): 15-23, 2023 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-36941858

RESUMO

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.


Why is this topic important: People are starting to realize that good autism research should include autistic people (as researchers, participants, co-designers, for example), which means working in neurodiverse teams (teams that include autistic and non-autistic people). So far, a lot of ideas that researchers have had about autistic people have said that they (we) are impaired, which is hurtful and can make it hard to work together. If we are going to create better research, and better spaces to do research in, we need to find new ideas and ways to work. It is important that these new ideas are based on how autistic people see themselves and the world around them (us). What is the purpose of this article?: In this article, we (a group of neurodivergent researchers) look at how we can apply ideas about how knowledge is made, how we use knowledge, and how knowledge impacts people, to creating better autism research. We use ideas from philosophy and think about how they can help us to share our experiences with each other. What do the authors suggest?: We start by exploring how a theory called 'critical realism' can be used to understand differing autistic experiences, by taking into account how our identities and experiences are shaped by different social environments and affect we think about the world. Next we apply standpoint theory, which looks at the importance of acknowledging the impact of a researchers own identity in research. Finally, we explore 'neurocosmopolitanism', which hopes for a future where our differences can be celebrated and accepted. We also think about 'epistemic injustice', where research that is done 'on' instead of 'with' leads to inaccurate or harmful knowledge about us. We argue that by applying ideas such as these to autism studies, we can create spaces where fair and just autism research is created. We argue that these ideas will help both autistic and non-autistic researchers to understand each other better, because they are based on what it is like to be autistic, and not what being autistic looks like to non-autistic people. What do the authors think should happen in the future?: The authors think that more researchers should think about what they say about autistic people. Autistic people should be recognized as the people with the most knowledge about what it is like to be autistic. We think that this will create a kinder way of working for both autistic and non-autistic people and research will be more useful and ethical. How will this study help autistic people now and in future?: This research will help autistic people in two ways. First, it will make sure that autistic people's ideas and experiences will be taken more seriously by non-autistic colleagues. Second, it will lead to better autism research, benefitting autistic people who are not just researchers. This is because the ideas will be more closely related to the experiences of autistic people, instead of outside interpretations of what it is like to be autistic.

10.
J Autism Dev Disord ; 53(2): 870-878, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33474662

RESUMO

In response to Vivanti's 'Ask The Editor…' paper [Journal of Autism and Developmental Disorders, 50(2), 691-693], we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Humanos , Idioma , Autonomia Pessoal
11.
Autism ; 27(5): 1235-1244, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36259512

RESUMO

LAY ABSTRACT: 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.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Humanos , Emoções , Pesquisadores , Respeito
12.
Dev Med Child Neurol ; 65(3): 310-317, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36082483

RESUMO

The neurodiversity movement is a social movement that emerged among autistic self-advocates. It has since spread and has been joined by many with diagnoses of attention-deficit/hyperactivity disorder, dyslexia, and developmental coordination disorder among others. By reconceptualizing neurodiversity as part of biodiversity, neurodiversity proponents emphasize the need to develop an 'ecological' society that supports the conservation of neurological minorities through the construction of ecological niches-that is, making space for all. This is an alternative to the drive to eliminate diversity through attempts to 'treat' or 'cure' neurodivergence. So far, neurodiversity theory has not been formally adapted for psychotherapeutic frameworks, and it is not the role of the therapist to make systemic changes to societal organization. Still, there is room for fruitfully drawing on a neurodiversity perspective for therapists working with neurodivergent people in clinical settings. Here, we draw on the example of autism and synthesize three key themes to propose the concept of neurodivergence-informed therapy. First, the reconceptualization of dysfunction as relational rather than individual. Second, the importance of neurodivergence acceptance and pride, and disability community and culture to emancipate neurodivergent people from neuro-normativity. Third, the need for therapists to cultivate a relational epistemic humility regarding different experiences of neurodivergence and disablement.


Assuntos
Transtorno Autístico , Pessoas com Deficiência , Humanos , Transtorno Autístico/terapia , Emoções
13.
Front Psychol ; 13: 1050897, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36506950

RESUMO

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.

14.
Autism ; 26(8): 2151-2164, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35318862

RESUMO

LAY ABSTRACT: 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.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Humanos , Transtorno Autístico/psicologia , Amigos , Saúde Mental , Relações Interpessoais
15.
Autism Adulthood ; 4(3): 247-253, 2022 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-36606159

RESUMO

Background: Masking involves blending in or covering a stigmatized identity, to avoid discrimination and to "pass" within society. Autistic people often report masking, both intentionally and unintentionally, to get by in social situations. Autistic people who report high rates of masking also tend to experience poorer mental health. It is important we understand whether there are variables that can protect against the negative effects of masking. One such potential variable is autistic community connectedness (ACC)-being part of and belonging to the autistic community. Past research suggests there are benefits for autistic people socially connecting with other autistic people. We investigated whether ACC could moderate the relationship between masking and wellbeing. Methods: One hundred ninety-six autistic people completed an online survey including measures of ACC, masking, and mental wellbeing. We used moderation analysis to test whether ACC acted as a buffer between masking and wellbeing. Results: Higher self-reported masking related to poorer mental wellbeing. Higher ACC related to more positive wellbeing. Higher ACC correlated with more masking. However, there was no interaction effect, and ACC did not moderate the relationship between masking and wellbeing. Conclusions: Although ACC did relate to more positive mental wellbeing overall, it did not moderate the negative relationship between masking and wellbeing. If masking relates to the prejudice faced by autistic people, those with greater attachment to the autistic community may also be more aware of discrimination against their community. Furthermore, autistic people who are more connected might experience a higher salience of masking when moving between autistic and nonautistic settings. Tackling prejudice toward autistic people is critical in helping to reduce the negative effects associated with masking, and we must endeavor to change perceptions and increase inclusion of autistic people.


Why is this an important issue?: Lots of autistic people say that they often have to 'mask' the fact they are autistic. This means they might (on purpose or by accident) use strategies like planning a social script before meeting someone, trying to hide their stims, or forcing themselves to use eye contact because non-autistic people expect this. Previous research has shown that the more someone masks, the more they experience poor mental health and wellbeing. We wondered whether feeling connected to the autistic community ("autistic community connectedness") could help protect autistic people from these negative masking outcomes, because many autistic people talk about how they get joy out of being part of this community. What was the purpose of this study?: We aimed to see whether autistic community connectedness could play a role in protecting autistic people against the negative effects of masking on mental wellbeing. What did the researchers do?: We used an online survey which included questions about masking, connectedness to the autistic community, and mental wellbeing. One hundred and ninety-six autistic people completed the survey. We used an analysis called 'moderation analysis' which can be used to see if something is acting like a buffer or protector between two things (in this case, masking and wellbeing). What were the results of the study?: Although people with higher autistic community connectedness generally had more positive mental wellbeing overall, we found that community connectedness was not acting like a protector. In other words, masking still related to poorer wellbeing, even when someone had high autistic community connectedness. What do these findings add to what was already known?: Our findings show that autistic community connectedness can be something positive for mental wellbeing, but we think that masking keeps happening because there is so much stigma and prejudice towards autistic people. It's difficult for autistic people to "take the mask off", and people who are more connected to the autistic community may be even more aware of the prejudice and discrimination experienced by the autistic community. Our findings provide further support for the idea that masking has a lot to do with experiences of stigma. What are potential weaknesses in the study?: Our participants were mostly female, and we recruited them via online communities. There may already be high feelings of autistic community connectedness in these participants, so our findings won't be the same for everyone, and it would be useful to have more people who actively reject being part of the autistic community within studies like ours, as well as having more diverse participants involved. How will these findings help autistic adults now or in the future?: We show that autistic community connectedness is related to wellbeing, and we need to support autistic people to feel like they can freely explore this community and decide whether they want to get involved or not. If we want to help autistic people mask less, we really need to work harder on creating societies that are open to authentically autistic people.

16.
J Community Psychol ; 2021 Dec 12.
Artigo em Inglês | MEDLINE | ID: mdl-34897720

RESUMO

Community psychology (CP) is a transformative subdiscipline of psychology which aims to address inequality and social injustice and to attend to wellbeing. It has been argued that CP lacks an underpinning philosophy of science. Philosophies of science provide road maps for values, methods, and objectives, thus ultimately framing all research. This study will highlight how traditional philosophies of science such as positivism, interpretivism, and social constructivism fail to support the complexity of CP and often essentialise complex phenomena, such as autism, to the detriment of stakeholders. Critical realism will then be introduced as a promising philosophy of science for CP, which can reinvigorate CPs push for impactful research and social change. The study will highlight how CP provides a platform for appreciating the complexity of autism and for transforming structures of inequality experienced by autistic people, together with autistic people.

17.
Front Psychol ; 12: 727542, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34650484

RESUMO

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.

20.
Ecol Evol ; 10(19): 10719-10734, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33072292

RESUMO

Fire and frost represent two major hurdles for the persistence of trees in open grassy biomes and have both been proposed as drivers of grassland-forest boundaries in Africa.We assess the response of young tree seedlings, which represent a vulnerable stage in tree recruitment, to traumatic fire and frost disturbances.In a greenhouse experiment, we investigated how seedling traits predicted survival and resprouting ability in response to fire versus frost; we characterized survival strategies of seedlings in response to the two disturbances, and we documented how the architecture of surviving seedlings is affected by fire versus frost injury.Survival rates were similar under both treatments. However, different species displayed different levels of sensitivity to fire and frost. Seedling survival was higher for older seedlings and seedlings with more basal leaves. Survivors of a fire event lost more biomass than the survivors of a frost event. However, the architecture of recovered fire- and frost-treated seedlings was mostly similar. Seedlings that recovered from fire and frost treatments were often shorter than those that had not been exposed to any disturbance, with multiple thin branches, which may increase vulnerability to the next frost or fire event. Synthesis. Fire caused more severe aboveground damage compared with a single frost event, suggesting that fire is an important driver of tree distribution in these open grassland systems. However, the impact of repeated frost events may be equally severe and needs to be investigated. Also, woody species composition may be influenced by phenomena that affect the timing and frequency of seedling exposure to damage, as mortality was found to be dependent on seedling age. Therefore, changes in fire regime and climate are likely to result in changes in the composition and the structure of the woody components of these systems.

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