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There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (N = 198) rated and ranked autism-terms for preference and offensiveness, and explained their choice in free-text. 'Autistic', 'Person on the Autism Spectrum', and 'Autistic Person' were rated most preferred and least offensive overall. Ranked-means showed 'person on the autism spectrum' was the most preferred term overall. Six qualitative themes reflected (1) autism as core to, or (2) part of one's identity, (3) 'spectrum' reflecting diversity, (4) the rejection of stigmatising and (5) medicalised language, and (6) pragmatics. These findings highlight the importance of inclusive dialogue regarding individual language preference.

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LAY ABSTRACT: Autism is a diagnosis given to individuals by professionals but is also increasingly seen as an identity which an individual can choose for themselves. We wanted to explore how having autism as an identity affects autistic young people. There is evidence that autistic adults have better psychological well-being when they feel more solidarity with other autistic people and feel positively about being autistic. We know that autistic teenagers often feel anxious in social situations. Having a positive autism identity might help alleviate social anxiety associated with being autistic. We wanted to find out if autistic young people who felt more solidarity with other autistic people, and had more positive feelings about autism, had better psychological well-being and less social anxiety. We asked 121 autistic people aged 15-22 years to complete some questionnaires. These questionnaires asked about the young person's autism traits, social anxiety, and psychological well-being. The questionnaires also asked how satisfied they felt to be autistic (satisfaction) and how much solidarity they felt with the autism community (solidarity). We found that autistic young people who had higher autism satisfaction had better psychological well-being and lower social anxiety. Young people who felt more solidarity with other autistic people had higher psychological well-being. There was no association between autism solidarity and social anxiety. We conclude that is important to support autistic young people to develop positive feelings about autism and to feel solidarity with other autistic people.

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LAY ABSTRACT: There is ongoing discussion around what language is acceptable when talking about someone with an autism diagnosis, especially regarding person-first (e.g. person with autism) or identity-first (e.g. autistic person) language. We asked 198 Australian adults with an autism diagnosis what terminology they prefer and what they find offensive. We also asked questions to understand their experience of stigma, their autism knowledge and how much they endorse an autism identity, to investigate if these factors were associated with their language preferences. Overall, there was no significant association between these three factors and person-first terminology. For identity-first terms, those who endorse a stronger autism identity tended to find identity-first terms more preferable and less offensive, whereas those who reported greater experiences and internalisation of stigma tended to find identity-first terms less preferable and more offensive. Previous research has tended to ask what language participants prefer. The findings of this work help provide some context as to why people prefer or find offensive specific terms, at least for identity-first language.

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People on the autism spectrum can learn about autism from various sources, likely differing in the information, portrayal, and discussion they offer. The present study investigates where autistic people learn about autism, and whether their information source is associated with their level of autism knowledge, perceptions of stigma, and development and expression of an autism identity. A survey of 198 Australian adults with an autism diagnosis showed that learning about autism from conventional sources (e.g., professionals, parents) was associated with more internalised stigma, lower endorsement of special abilities and autism identity, whereas online blogs and social media showed the opposite pattern as well as more accurate knowledge of autism. The findings raise questions about how authoritative sources of information discuss autism.

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BACKGROUND: A population segment of autistic adults are under-identified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the "lost generation", may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and self-diagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups. METHODS: Over 1000 adults diagnosed (n = 893) or self-diagnosed (n = 245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and wellbeing. The diagnosed dataset was randomly split with exploratory factor analysis performed on a training dataset. Split-half cross-validation was used to predict the factor structure of the holdout dataset. Then, the full diagnosed dataset structure was used to determine the generalizability of the factor structure to the self-diagnosed dataset. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life. RESULTS: Factor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the self-diagnosed dataset from the diagnosed dataset ranged from .97 - 1.00 with similar internal consistency. Self-diagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term "autism" than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life and in ASIS factors; both groups reported lower quality of life than the general population. CONCLUSIONS: The ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed. The profile of self-diagnosed participants matches the profile hypothesized for the "lost generation" and others at risk of being under-identified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism or could benefit from interventions, programs, or services serving autism communities.

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Background: The purpose of this project was to understand how college students on the autism spectrum integrate their diagnosis into their identity, whether they connect with a broader "autism community," and when and why they disclose their diagnosis to other people. Methods: Twenty participants completed semistructured interviews by phone, text message, or email. An inductive approach was used to generate codes, and results were synthesized via thematic analysis, theme counts, comparing and contrasting cases, and examining outliers. Results: Across participants and interview topics, the students in our study expressed a desire to be understood and known genuinely by other people. Interviews revealed that autistic identity is complex and variable across individuals. Most of the students in our study did not feel part of a broader autism community, although several reported that some of their close friends were on the spectrum as well. Our participants rarely disclosed their autism to other people, and this decision was often informed by whether the disclosure would support or inhibit understanding. Conclusions: Results suggest there is a need for neurotypical people to be more accepting, affirming, and empathetic in their interactions with neurodivergent people. In addition, our results suggest that autistic college students may not participate in services that explicitly connect groups of students on the spectrum or require disclosure of their diagnosis. College students with autism should be involved in the development of college supports and services that are consistent with their values and disclosure practices. Lay Summary: What was the purpose of this study?: The purpose of this study was to understand how autistic college students integrate autism into their identity, whether they feel a part of a larger "autism community" and when and why they tell other people that they have autism.What did the researchers do?: The researchers in this study interviewed 20 autistic college students. Interviews included several topics: (1) how autism fits into students' sense of identity, (2) whether they feel connected to an autism community, and (3) whether, when, and why the students tell others they are on the autism spectrum. Researchers read the interview transcripts and identified common themes based on what students said.What were the results of the study?: Overall, the college students in this study wanted to be genuinely understood by others. Some students identified strongly as autistic, whereas others felt it was not part of who they are. Most students in this study did not feel a part of a larger autism community, but several reported having friends on the spectrum. Most participants did not tell others about their autism diagnosis; however, they felt comfortable sharing this information with close friends, romantic partners, and school personnel. In general, decisions about disclosing (or not disclosing) were related to being understood by other people.What do these findings add to what was already known?: This study focused on the experience of autistic college students from their own perspective and discussed relationships between disclosure practices, autistic identity, and connection to autism communities in a way other studies had not done before. This study's findings suggest a need for neurotypical people to be more accepting, affirming, and empathetic toward people with autism. In addition, because college students on the autism spectrum may not use services that require disclosure of their diagnosis, colleges should allow autistic students to be involved in the development of services that meet this population's unique needs.What are potential weaknesses in the study?: This study only recruited participants from disability resource centers of colleges in the midwestern United States, so results may not apply to other people. Students who had not registered with disability services could not be contacted for participation in this study. Furthermore, most participants in this study were white men from families with a high level of education, so we have a limited ability to understand how being autistic might intersect with other facets of identity for members of other marginalized groups.How will these findings help autistic adults?: These findings help the autism community by informing the neurotypical population about the need to be more accepting of the unique perspectives of people on the autism spectrum. Although autism awareness in the United States has increased, our results suggest that awareness alone is not enough. Instead, our goal should be to promote acceptance, inclusion, and empowerment of autistic people.